[QUAD-L] Re: can anyone recommend a Cup holder that will Fasten on the armrest

[Dana]

The company that previously made cupholders with insulated Mugs with long
straws went out of business. I have gotten their products for over 20
years. Now I’m using the Fleximug, but I need a holder that won’t thousand
to my push handles on my permobile. does anyone else have this problem.
They are various forms on the Internet but it doesn’t really tell you if it
will fit on the push Handles.

Thank you for your information.
Dana Wray C4-5 complete, 48 years post.

On Fri, Oct 7, 2022 at 3:44 AM Shala Silverstein 
wrote:

> Lissette, also senokot ass has helped me wonders, it's a laxative with a
> stimulant so you better be by a toilet after 12 hours! It has the push
> behind it to help you go! My doctor told me to try this after 20 years of
> doing it by myself! Wtf!
>
> On Sun, Oct 2, 2022, 6:06 PM Lissette Whitehead 
> wrote:
>
>> Sorry, I meant to reply to Shala but thanks for your input Carla! 
>>
>> Lissette Whitehead
>> (949)505-8005
>> --
>> *From:* Lissette Whitehead 
>> *Sent:* Sunday, October 2, 2022 3:03:26 PM
>> *To:* Carla Aarssen ; Shala Silverstein <
>> chopsk...@gmail.com>; quad-list@eskimo.com 
>> *Subject:* Re: [QUAD-L] Fingers crossed that I'm doing this properly. If
>> not just send it back. Thanks.
>>
>> Hello Carla, I recently discovered that I have hemorrhoids as well, I
>> guess from so much constipation and didge shimming. I also noticed
>> increased spasms, especially when I’m in bed, it’s not too bad, it’s
>> usually just when I first lay down and then they calm down. I think my
>> mattress helps a lot, it’s a gel mattress, however I do have a big butt
>> which probably helps too. I can’t sleep on my side because my shoulders
>> start hurting after 15-20 minutes, so I sleep on my back all night. I’ve
>> tried hemorrhoid creams but didn’t help much. I read that taking an
>> anti-inflammatory could help, I haven’t tried it yet but I think the best
>> thing to do is to address the hemorrhoids. I think also fiber rich diet
>> might help. Also, not sure if the hemorrhoids are obstructing my bowels
>> from coming out, because I've been having the hardest time lately. Maybe
>> seeing a doctor for the hemorrhoid issue it's not a bad idea.
>>
>> Lissette Whitehead
>> (949)505-8005
>> --
>> *From:* Carla Aarssen 
>> *Sent:* Sunday, October 2, 2022 10:02:23 AM
>> *To:* Shala Silverstein ; quad-list@eskimo.com <
>> quad-list@eskimo.com>
>> *Subject:* Re: [QUAD-L] Fingers crossed that I'm doing this properly. If
>> not just send it back. Thanks.
>>
>> Do you have an air mattress? Because they are awesome for relieving
>> pressure. Most of the time I set mine to float but if I have a pressure
>> sore I set it to alternate and it will move air side to side kind of like
>> you are doing with pillow but more often and while you sleep.
>> I also have issues with hemorrhoids I spent 4yrs every 3 months having
>> them banded (rubber bands caught off blood supply) and they would fall off
>> within 4 days. But Dr told me we would never get ahead this way so he
>> finally referred me to a surgeon to have them removed. That was at the
>> beginning of Covid unfortunately I am still on waiting list for surgery.
>> Anyway I am same level quad as you and my accident was in 2002 so almost
>> as many years post injury as well. If you would like to share with
>> eachother my email is caars...@hotmail.com. You can also find me on
>> Facebook.
>> Wishing you all the best!
>> Carla Aarssen
>>
>> Get Outlook for Android 
>> --
>> *From:* Shala Silverstein 
>> *Sent:* Sunday, October 2, 2022 12:28:47 AM
>> *To:* quad-list@eskimo.com 
>> *Subject:* [QUAD-L] Fingers crossed that I'm doing this properly. If not
>> just send it back. Thanks.
>>
>> Hello my name is Shala & I had a car accident in 1999 that left me a
>> complete C-4,5 & 6 quadriplegic. Since then I've had a couple bumps in the
>> road but nothing major. Now almost 24 years later, I think some things are
>> taking a toll on my body & I've come to a crossroad & am looking for some
>> experienced advice. That being said let me tell you about my situation, I'm
>> sure most quads will understand when I say that bowel movements can be
>> tough, we need assistance. I've heard it referred to as "ditch stem", &
>> manual disimpaction. Well after doing things this way for usually 5 days
>> out of the week, I've ended up with some hemorrhoids. So when nighttime
>> comes I'm unable to lay flat on my back not only because of the hemorrhoids
>> but because of my bony coccyx. For the last 10 years I've used a pregnancy
>> pillow, and to keep me over on my side I'll use a wedge or a regular
>> pillow. After 2 hours I'm awoken in such pain in my back because of either
>> the pillow or the wedge, so I will switch sides and it starts all over
>> again. I'm wondering if anybody else deals with these two problems and has
>> a better way of staying off their coccyx 

Re: [QUAD-L] " re looking forward to any advice" Danny

[Dana]

Hi Danny,

I use MiraLAX every day and Senna using enemas as suppositories no longer
worked I have been paralyzed 48 years, C 4-5 complete. I also have a trach
and ileo -Conduit from bladder cancer. I have A lot of problems with kidney
stones and I have to be scanned every year and I go to my urologist every
six months. I have had sepsis 6 times. I have osteoporosis and I go to a
specialist to get prolia, I take sweating medicine and I take a medication
for seizures. I take a lot of vitamins. I eat a lot of vegetables and
fruits and I am on a low carb diet. I take collagen and L arginine in a
powder form for my skin and wound care. I have a reoccurring sore on my
panty line, because my hip was broken by caregiver doing range of motion in
properly and it causes me to put pressure on the right side causing a sore.
I use a Roho 4 section. I use a Tempur-Pedic. it is perfect for putting on
my left side and keeping me straight all day. It does need to be adjusted.
I use two different side pads that were put on by Nu-Motion. I have Roho
pads under my feet and behind my legs to prevent pressure. I also have a
Roho back Cushion.

I use the Fleximug for my drinks It’s very hard to find a glass holder that
won’t move and spill all the drink. I would appreciate any suggestions that
others use. are you sa

I think we all have similar problems and it’s good to share the products we
use that others might not know about. I Believe my range of motion
exercises really help me. I cannot do my left leg that was broken or my
right foot that was broken when they did surgery and they put on fixator
too tight causing it to break and get gangrene, wound vac two months and
then a skin graft. I have no fat behind my heel. I have had 3 skin graphs,
one for a burn from hot tea requiring surgery, right foot.

I use a Permobile 300, with the elevator and tilt feature. I also use a
device that hooks to my headrest and it allows me to recline tilt. It works
very well. I still have to have my caregivers help me at times because as I
fall over from the broken hip it makes it hard to reach the head device,
which is also caused by scoliosis the seating person told me when he
evaluate me and has several times with each wheelchair or additional parts.

I don’t know anything I am said would it help anyone. It would be great for
us to share the vitamins we take.. favorite things we like to eat and do
and share the best suppliers for medical supplies. i’m on Facebook under
Dana Wray if anyone wants to be friends. If you ever need prayers I enjoy
praying for others also.I belong to several spinal cord groups on Facebook.
Someone stole my Facebook account so I had to open a new one. I’m in a
black T-shirt that says Calvin. I lost all my friends when that happened.
Please referred me. Thank you for listening. please forgive me for my typos
call me it’s hard for me to correct all my mistakes. I just saw Medication
advertised on TV that I have taken for Bowel blockages ducolax in gummies,
which work, quickly.I have been in the hospital for bowel blockages and
they use molasses enemas. You can read about how they are done on the
Internet. Then there’s old fashion milk of magnesia and prune juice.
Whatever works for your system. I know one of the members has talked about
a new device that he uses. I can’t remember the name of it. I have used one
that uses water.

Dana Wray and I am in Prairie Village Kansas.

On Fri, Oct 7, 2022 at 4:19 AM Shala Silverstein 
wrote:

> Hello Danny H.,
>  Have you ever heard of senokot s? I also occasionally use miralax and
> have tried to slew of other laxatives. One thing that I also use if I get
> to a jam where I haven't used the bathroom for over a week, is the relistor
> injection, but this is also for people that have constipation due to
> opioids. But if this isn't for you the senokot s has really changed my life
> it has the push behind it that we no longer have. The only thing is is it
> calls to take it 12 hours before you're going to be on the toilet but just
> to be safe I would do 14 {Had an accident once or twice because of improper
> timing} hours ahead of time. Thanks for the advice, Shala
>

[QUAD-L] " re looking forward to any advice" Danny

[Shala Silverstein]

Hello Danny H.,
 Have you ever heard of senokot s? I also occasionally use miralax and have
tried to slew of other laxatives. One thing that I also use if I get to a
jam where I haven't used the bathroom for over a week, is the relistor
injection, but this is also for people that have constipation due to
opioids. But if this isn't for you the senokot s has really changed my life
it has the push behind it that we no longer have. The only thing is is it
calls to take it 12 hours before you're going to be on the toilet but just
to be safe I would do 14 {Had an accident once or twice because of improper
timing} hours ahead of time. Thanks for the advice, Shala

[QUAD-L] Re: Questing information on online-support group

[Jim Lubin]

Hi Laura,

Are you looking for an online or in-person support group?


On Thu, Apr 21, 2022 at 7:01 PM Laura Tinker 
wrote:

>
> Hi my name is Laura. I’m a care giver to my brother Andrew. Andrew is 39
> years old. He has Schizophrenia and is a quadriplegic from a Traumatic
> brain Injury in a car accident last year. He was a pedestrian hit by a car.
> He can talk a little bit and can use his left hand and both arms. He can
> not use his legs. He has expressed to me he would like to be a part of a
> support group.
>  If you have any suggestions please email me at:
>
>  ms.lauratin...@gmail.com
>
> Thank you!
> Sent from my iPad

Re: [QUAD-L] Re: Quadlist Zoom Meetup, 2/15, 3pm AZ Time

[Jeffrey Gaede]

 I thought 3 PM MST is 4 PM PST?
On Tuesday, February 15, 2022, 11:10:01 AM PST, Don Price 
 wrote:  
 
  yes, 3pm AZ is 2pm pacific and 5pm eastern
On Monday, February 14, 2022, 05:41:03 PM MST, Jim Lubin  
wrote:  
 
 

-- Forwarded message -
From: Jim Lubin 
Date: Mon, Feb 14, 2022 at 4:38 PM
Subject: Re: [QUAD-L] Re: Quadlist Zoom Meetup, 2/15, 3pm AZ Time
To: Edward Tessier 
Cc: Don Price , Quad-list Post 


I was just checking the time. Is 3 pm AZ Time = 2 pm Pacific Time = 5 pm 
Eastern Time?

On Tue, Feb 8, 2022 at 6:16 PM Edward Tessier  wrote:

Thanks Don!
 Can't wait to finally see everybody
 Ed TessierFrom: Don Price 
Sent: Tuesday, February 8, 2022 1:29 PM
To: Quad-list Post ; Edward Tessier 

Subject: Quadlist Zoom Meetup, 2/15, 3pm AZ Time I've set up this Zoom meeting. 
Join if you can. It would be fun to connect faces with names!
Don Price is inviting you to a scheduled Zoom meeting.
Topic: Quadlist Meetup ZoomTime: Feb 15, 2022 03:00 PM Arizona
Join Zoom Meetinghttps://us02web.zoom.us/j/81350063298
Meeting ID: 813 5006 3298One tap mobile+12532158782,,81350063298# US 
(Tacoma)+13462487799,,81350063298# US (Houston)
Dial by your location        +1 253 215 8782 US (Tacoma)        +1 346 248 7799 
US (Houston)        +1 669 900 6833 US (San Jose)        +1 301 715 8592 US 
(Washington DC)        +1 312 626 6799 US (Chicago)        +1 929 205 6099 US 
(New York)Meeting ID: 813 5006 3298Find your local number: 
https://us02web.zoom.us/u/kboTHzy9Ma

Re: [QUAD-L] Re: Quadlist Zoom Meetup, 2/15, 3pm AZ Time

[Don Price]

 yes, 3pm AZ is 2pm pacific and 5pm eastern
On Monday, February 14, 2022, 05:41:03 PM MST, Jim Lubin  
wrote:  
 
 

-- Forwarded message -
From: Jim Lubin 
Date: Mon, Feb 14, 2022 at 4:38 PM
Subject: Re: [QUAD-L] Re: Quadlist Zoom Meetup, 2/15, 3pm AZ Time
To: Edward Tessier 
Cc: Don Price , Quad-list Post 


I was just checking the time. Is 3 pm AZ Time = 2 pm Pacific Time = 5 pm 
Eastern Time?

On Tue, Feb 8, 2022 at 6:16 PM Edward Tessier  wrote:

Thanks Don!
 Can't wait to finally see everybody
 Ed TessierFrom: Don Price 
Sent: Tuesday, February 8, 2022 1:29 PM
To: Quad-list Post ; Edward Tessier 

Subject: Quadlist Zoom Meetup, 2/15, 3pm AZ Time I've set up this Zoom meeting. 
Join if you can. It would be fun to connect faces with names!
Don Price is inviting you to a scheduled Zoom meeting.
Topic: Quadlist Meetup ZoomTime: Feb 15, 2022 03:00 PM Arizona
Join Zoom Meetinghttps://us02web.zoom.us/j/81350063298
Meeting ID: 813 5006 3298One tap mobile+12532158782,,81350063298# US 
(Tacoma)+13462487799,,81350063298# US (Houston)
Dial by your location        +1 253 215 8782 US (Tacoma)        +1 346 248 7799 
US (Houston)        +1 669 900 6833 US (San Jose)        +1 301 715 8592 US 
(Washington DC)        +1 312 626 6799 US (Chicago)        +1 929 205 6099 US 
(New York)Meeting ID: 813 5006 3298Find your local number: 
https://us02web.zoom.us/u/kboTHzy9Ma










  

Fwd: [QUAD-L] Re: Quadlist Zoom Meetup, 2/15, 3pm AZ Time

[Jim Lubin]

-- Forwarded message -
From: Jim Lubin 
Date: Mon, Feb 14, 2022 at 4:38 PM
Subject: Re: [QUAD-L] Re: Quadlist Zoom Meetup, 2/15, 3pm AZ Time
To: Edward Tessier 
Cc: Don Price , Quad-list Post 


I was just checking the time.
Is 3 pm AZ Time = 2 pm Pacific Time = 5 pm Eastern Time?


On Tue, Feb 8, 2022 at 6:16 PM Edward Tessier  wrote:

> Thanks Don!
>
>  Can't wait to finally see everybody
>
>  Ed Tessier
> --
> *From:* Don Price 
> *Sent:* Tuesday, February 8, 2022 1:29 PM
> *To:* Quad-list Post ; Edward Tessier <
> e...@artecopartners.com>
> *Subject:* Quadlist Zoom Meetup, 2/15, 3pm AZ Time
>
> I've set up this Zoom meeting. Join if you can. It would be fun to connect
> faces with names!
>
> Don Price is inviting you to a scheduled Zoom meeting.
>
> Topic: Quadlist Meetup Zoom
> Time: Feb 15, 2022 03:00 PM Arizona
>
> Join Zoom Meeting
> https://us02web.zoom.us/j/81350063298
>
> Meeting ID: 813 5006 3298
> One tap mobile
> +12532158782, <http://voice.google.com/calls?a=nc,%2B12532158782>,81350063298#
> US (Tacoma)
> +13462487799, <http://voice.google.com/calls?a=nc,%2B13462487799>,81350063298#
> US (Houston)
>
> Dial by your location
> +1 253 215 8782
> <http://voice.google.com/calls?a=nc,%2B12532158782>US (Tacoma)
> +1 346 248 7799
> <http://voice.google.com/calls?a=nc,%2B13462487799>US (Houston)
> +1 669 900 6833
> <http://voice.google.com/calls?a=nc,%2B16699006833>US (San Jose)
> +1 301 715 8592
> <http://voice.google.com/calls?a=nc,%2B13017158592>US (Washington DC)
> +1 312 626 6799
> <http://voice.google.com/calls?a=nc,%2B13126266799>US (Chicago)
> +1 929 205 6099
> <http://voice.google.com/calls?a=nc,%2B19292056099>US (New York)
> Meeting ID: 813 5006 3298
> Find your local number: https://us02web.zoom.us/u/kboTHzy9Ma
>
>
>

Re: [QUAD-L] Re: Quadlist Zoom Meetup, 2/15, 3pm AZ Time

[Jim Lubin]

I was just checking the time.
Is 3 pm AZ Time = 2 pm Pacific Time = 5 pm Eastern Time?


On Tue, Feb 8, 2022 at 6:16 PM Edward Tessier  wrote:

> Thanks Don!
>
>  Can't wait to finally see everybody
>
>  Ed Tessier
> --
> *From:* Don Price 
> *Sent:* Tuesday, February 8, 2022 1:29 PM
> *To:* Quad-list Post ; Edward Tessier <
> e...@artecopartners.com>
> *Subject:* Quadlist Zoom Meetup, 2/15, 3pm AZ Time
>
> I've set up this Zoom meeting. Join if you can. It would be fun to connect
> faces with names!
>
> Don Price is inviting you to a scheduled Zoom meeting.
>
> Topic: Quadlist Meetup Zoom
> Time: Feb 15, 2022 03:00 PM Arizona
>
> Join Zoom Meeting
> https://us02web.zoom.us/j/81350063298
>
> Meeting ID: 813 5006 3298
> One tap mobile
> +12532158782,,81350063298# US (Tacoma)
> +13462487799,,81350063298# US (Houston)
>
> Dial by your location
> +1 253 215 8782 US (Tacoma)
> +1 346 248 7799 US (Houston)
> +1 669 900 6833 US (San Jose)
> +1 301 715 8592 US (Washington DC)
> +1 312 626 6799 US (Chicago)
> +1 929 205 6099 US (New York)
> Meeting ID: 813 5006 3298
> Find your local number: https://us02web.zoom.us/u/kboTHzy9Ma
>
>
>

[QUAD-L] Re: Quadlist Zoom Meetup, 2/15, 3pm AZ Time

[Edward Tessier]

Thanks Don!

 Can't wait to finally see everybody

 Ed Tessier

From: Don Price 
Sent: Tuesday, February 8, 2022 1:29 PM
To: Quad-list Post ; Edward Tessier 

Subject: Quadlist Zoom Meetup, 2/15, 3pm AZ Time

I've set up this Zoom meeting. Join if you can. It would be fun to connect 
faces with names!

Don Price is inviting you to a scheduled Zoom meeting.

Topic: Quadlist Meetup Zoom
Time: Feb 15, 2022 03:00 PM Arizona

Join Zoom Meeting
https://us02web.zoom.us/j/81350063298

Meeting ID: 813 5006 3298
One tap mobile
+12532158782,,81350063298# US (Tacoma)
+13462487799,,81350063298# US (Houston)

Dial by your location
+1 253 215 8782 US (Tacoma)
+1 346 248 7799 US (Houston)
+1 669 900 6833 US (San Jose)
+1 301 715 8592 US (Washington DC)
+1 312 626 6799 US (Chicago)
+1 929 205 6099 US (New York)
Meeting ID: 813 5006 3298
Find your local number: https://us02web.zoom.us/u/kboTHzy9Ma

Re: [QUAD-L] Re: Testing my email

[Edward Tessier]

Hey team,

 Ed Tessier here.

 C5 – 6, 38 years post injury, surfing accident

 I'm married (20 years) and have four teenage boys (two the old-fashioned way 
and two adopted)

 we live in Pomona California, which is about 30 miles east of downtown LA

 I work as a real estate developer in a family firm.

 in general terms my health is decent but I do have chronic problems:

From: Don Price 
Sent: Monday, January 31, 2022 12:25 PM
To: Quad-list Post 
Subject: Re: [QUAD-L] Re: Testing my email

Hello all!

Don Price, C5-6, 40 years post-injury. Diving accident.
Tempe, AZ.

I don't post to this group very often but I try to read the emails. I hope 
you're all well.

I have a Zoom account and would be happy to set up a Zoom meeting if you all 
want to meet online sometime.

Best wishes,
Don.

On Wednesday, January 26, 2022, 01:47:43 AM MST, Dana Wray  
wrote:


I am Dana Wray  C 4- 5
Complete quadriplegic, tracheostomy, ILEO-conduit from bladder cancer  and I 
also had colon cancer. I have a lot of problems with kidney stones.

I have learned much from everybody also and I really enjoyed the group. Thank 
you all for posting so we can Reconnect. I am 68 years old and 47 years post. I 
am on Facebook under my name.Prairie Village, Kansas .Suburb up Kansas City. I 
pray that everyone is well and not in the hospital, the worst place to be. I 
just lost a good friend to COVID-19. It was such a shock.

On Sat, Jan 15, 2022 at 4:59 PM Michelle Kephart 
mailto:michelle.keph...@gmail.com>> wrote:
Hello from Colorado! I’m a C5 quad, 13 years post. I don’t speak up often but 
I’ve learned so much from all of you and I appreciate this group. ❤️

Michelle


On Sat, Jan 15, 2022 at 2:00 PM radnbada...@aol.com<mailto:radnbada...@aol.com> 
mailto:radnbada...@aol.com>> wrote:
Ray (radnbadatpj) Still here  c/5 Prescott Valley AZ 20yrs post, miss all the 
old timers:( Jim who started this site, I think he’s still here,  W (Wheelchair 
who’s son was a quad) and he always gave awesome advice and just knew a bunch 
of stuff. Eric who’s still here, Dave from Phoenix injured during gymnastics 
meet (I think), Jim ( he did donkey trails little inspirational quotes on 
here.) Mark who was Quad Pirate, Silas, the farmer, Houston the gangster, who 
was going to college, Little Quad can’t remember her name, Lori who just 
recently passed away,  Dave from Texas, Boyd who at the time was the oldest 
member on the quad list, I think he was a pilot,  Joan can’t remember if it was 
her or Nancy who raised miniature horses. Greg he also lives in Arizona. These 
are just a few of the names that come to mind:-) I found this site a couple 
years after my accident and have followed it through the years. Sorry for 
rambling on, anyway I pray everyone is off to a great New Year and good health 
keep the post’s coming



Sent from the all new AOL app for 
iOS<https://apps.apple.com/us/app/aol-news-email-weather-video/id646100661>



On Saturday, January 15, 2022, 11:07 AM, Carla Aarssen 
mailto:caars...@hotmail.com>> wrote:

I am still here. 42yr old female C5 quadriplegic from Ontario, Canada 

Get Outlook for Android<https://aka.ms/AAb9ysg>

From: Eric Olson mailto:whee...@wi.rr.com>>
Sent: Saturday, January 15, 2022 12:41:59 PM
To: Jeffrey Gaede mailto:jsga...@yahoo.com>>
Cc: Edward Tessier mailto:e...@artecopartners.com>>; 
quad-list@eskimo.com<mailto:quad-list@eskimo.com> 
mailto:quad-list@eskimo.com>>
Subject: Re: [QUAD-L] Re: Testing my email

I just meant how many people are actually subscribed to the list.  I think most 
of the people that were on the list at one time have moved on to social media.  
Shame.

On Fri, Jan 14, 2022 at 11:22 AM Jeffrey Gaede 
mailto:jsga...@yahoo.com>> wrote:
As in? Quadriplegics? Tetraplegics?

On Friday, January 14, 2022, 09:18:05 AM PST, Eric Olson 
mailto:whee...@wi.rr.com>> wrote:


I often wonder how many of us there are.

On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier 
mailto:e...@artecopartners.com>> wrote:
My message got through.

 Thanks everybody!

From: Edward Tessier
Sent: Thursday, January 13, 2022 7:52 PM
To: quad-list@eskimo.com<mailto:quad-list@eskimo.com> 
mailto:quad-list@eskimo.com>>
Subject: Testing my email

I haven't posted in a long time that I want to make sure it still works with my 
current email.   If anybody sees this, just give me a quick howdy.

 Thanks

Re: [QUAD-L] Re: Testing my email

[Don Price]

 Hello all!
Don Price, C5-6, 40 years post-injury. Diving accident.Tempe, AZ.
I don't post to this group very often but I try to read the emails. I hope 
you're all well.
I have a Zoom account and would be happy to set up a Zoom meeting if you all 
want to meet online sometime.
Best wishes,Don.
On Wednesday, January 26, 2022, 01:47:43 AM MST, Dana Wray 
 wrote:  
 
 I am Dana Wray  C 4- 5Complete quadriplegic, tracheostomy, ILEO-conduit from 
bladder cancer  and I also had colon cancer. I have a lot of problems with 
kidney stones.
I have learned much from everybody also and I really enjoyed the group. Thank 
you all for posting so we can Reconnect. I am 68 years old and 47 years post. I 
am on Facebook under my name.Prairie Village, Kansas .Suburb up Kansas City. I 
pray that everyone is well and not in the hospital, the worst place to be. I 
just lost a good friend to COVID-19. It was such a shock. 
On Sat, Jan 15, 2022 at 4:59 PM Michelle Kephart  
wrote:

Hello from Colorado! I’m a C5 quad, 13 years post. I don’t speak up often but 
I’ve learned so much from all of you and I appreciate this group. ❤️
Michelle

On Sat, Jan 15, 2022 at 2:00 PM radnbada...@aol.com  wrote:

Ray (radnbadatpj) Still here  c/5 Prescott Valley AZ 20yrs post, miss all the 
old timers:( Jim who started this site, I think he’s still here,  W (Wheelchair 
who’s son was a quad) and he always gave awesome advice and just knew a bunch 
of stuff. Eric who’s still here, Dave from Phoenix injured during gymnastics 
meet (I think), Jim ( he did donkey trails little inspirational quotes on 
here.) Mark who was Quad Pirate, Silas, the farmer, Houston the gangster, who 
was going to college, Little Quad can’t remember her name, Lori who just 
recently passed away,  Dave from Texas, Boyd who at the time was the oldest 
member on the quad list, I think he was a pilot,  Joan can’t remember if it was 
her or Nancy who raised miniature horses. Greg he also lives in Arizona. These 
are just a few of the names that come to mind:-) I found this site a couple 
years after my accident and have followed it through the years. Sorry for 
rambling on, anyway I pray everyone is off to a great New Year and good health 
keep the post’s coming  


Sent from the all new AOL app for iOS


On Saturday, January 15, 2022, 11:07 AM, Carla Aarssen  
wrote:

I am still here. 42yr old female C5 quadriplegic from Ontario, Canada 
Get Outlook for AndroidFrom: Eric Olson 
Sent: Saturday, January 15, 2022 12:41:59 PM
To: Jeffrey Gaede 
Cc: Edward Tessier ; quad-list@eskimo.com 

Subject: Re: [QUAD-L] Re: Testing my email I just meant how many people are 
actually subscribed to the list.  I think most of the people that were on the 
list at one time have moved on to social media.  Shame.  

On Fri, Jan 14, 2022 at 11:22 AM Jeffrey Gaede  wrote:

As in? Quadriplegics? Tetraplegics?
On Friday, January 14, 2022, 09:18:05 AM PST, Eric Olson  
wrote:

I often wonder how many of us there are.

On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier  wrote:

My message got through.
 Thanks everybody!From: Edward Tessier
Sent: Thursday, January 13, 2022 7:52 PM
To: quad-list@eskimo.com 
Subject: Testing my email I haven't posted in a long time that I want to make 
sure it still works with my current email.   If anybody sees this, just give me 
a quick howdy.
 Thanks






  

Re: [QUAD-L] Re: Testing my email

[Dana Wray]

I am Dana Wray  C 4- 5
Complete quadriplegic, tracheostomy, ILEO-conduit from bladder cancer  and
I also had colon cancer. I have a lot of problems with kidney stones.

I have learned much from everybody also and I really enjoyed the group.
Thank you all for posting so we can Reconnect. I am 68 years old and 47
years post. I am on Facebook under my name.Prairie Village, Kansas .Suburb
up Kansas City. I pray that everyone is well and not in the hospital, the
worst place to be. I just lost a good friend to COVID-19. It was such a
shock.

On Sat, Jan 15, 2022 at 4:59 PM Michelle Kephart 
wrote:

> Hello from Colorado! I’m a C5 quad, 13 years post. I don’t speak up often
> but I’ve learned so much from all of you and I appreciate this group. ❤️
>
> Michelle
>
>
> On Sat, Jan 15, 2022 at 2:00 PM radnbada...@aol.com 
> wrote:
>
>> Ray (radnbadatpj) Still here  c/5 Prescott Valley AZ 20yrs post, miss all
>> the old timers:( Jim who started this site, I think he’s still here,  W
>> (Wheelchair who’s son was a quad) and he always gave awesome advice and
>> just knew a bunch of stuff. Eric who’s still here, Dave from Phoenix
>> injured during gymnastics meet (I think), Jim ( he did donkey trails
>> little inspirational quotes on here.) Mark who was Quad Pirate, Silas,
>> the farmer, Houston the gangster, who was going to college, Little Quad
>> can’t remember her name, Lori who just recently passed away,  Dave from
>> Texas, Boyd who at the time was the oldest member on the quad list, I think
>> he was a pilot,  Joan can’t remember if it was her or Nancy who raised
>> miniature horses. Greg he also lives in Arizona. These are just a few of
>> the names that come to mind:-) I found this site a couple years after my
>> accident and have followed it through the years. Sorry for rambling on,
>> anyway I pray everyone is off to a great New Year and good health keep the
>> post’s coming
>>
>>
>>
>> Sent from the all new AOL app for iOS
>> <https://apps.apple.com/us/app/aol-news-email-weather-video/id646100661>
>>
>>
>> On Saturday, January 15, 2022, 11:07 AM, Carla Aarssen <
>> caars...@hotmail.com> wrote:
>>
>> I am still here. 42yr old female C5 quadriplegic from Ontario, Canada 
>>
>> Get Outlook for Android <https://aka.ms/AAb9ysg>
>> ----------
>> *From:* Eric Olson 
>> *Sent:* Saturday, January 15, 2022 12:41:59 PM
>> *To:* Jeffrey Gaede 
>> *Cc:* Edward Tessier ; quad-list@eskimo.com <
>> quad-list@eskimo.com>
>> *Subject:* Re: [QUAD-L] Re: Testing my email
>>
>> I just meant how many people are actually subscribed to the list.  I
>> think most of the people that were on the list at one time have moved on to
>> social media.  Shame.
>>
>> On Fri, Jan 14, 2022 at 11:22 AM Jeffrey Gaede  wrote:
>>
>> As in? Quadriplegics? Tetraplegics?
>>
>> On Friday, January 14, 2022, 09:18:05 AM PST, Eric Olson <
>> whee...@wi.rr.com> wrote:
>>
>>
>> I often wonder how many of us there are.
>>
>> On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier 
>> wrote:
>>
>> My message got through.
>>
>>  Thanks everybody!
>> --
>> *From:* Edward Tessier
>> *Sent:* Thursday, January 13, 2022 7:52 PM
>> *To:* quad-list@eskimo.com 
>> *Subject:* Testing my email
>>
>> I haven't posted in a long time that I want to make sure it still works
>> with my current email.   If anybody sees this, just give me a quick howdy.
>>
>>  Thanks
>>
>>

Re: [QUAD-L] Re: Testing my email

[Noel]

Think I've been here since the late 1990's, remember when we used to get
together and chat on mIRC

On Sat, Jan 15, 2022 at 2:00 PM radnbada...@aol.com 
wrote:

> Ray (radnbadatpj) Still here  c/5 Prescott Valley AZ 20yrs post, miss all
> the old timers:( Jim who started this site, I think he’s still here,  W
> (Wheelchair who’s son was a quad) and he always gave awesome advice and
> just knew a bunch of stuff. Eric who’s still here, Dave from Phoenix
> injured during gymnastics meet (I think), Jim ( he did donkey trails
> little inspirational quotes on here.) Mark who was Quad Pirate, Silas,
> the farmer, Houston the gangster, who was going to college, Little Quad
> can’t remember her name, Lori who just recently passed away,  Dave from
> Texas, Boyd who at the time was the oldest member on the quad list, I think
> he was a pilot,  Joan can’t remember if it was her or Nancy who raised
> miniature horses. Greg he also lives in Arizona. These are just a few of
> the names that come to mind:-) I found this site a couple years after my
> accident and have followed it through the years. Sorry for rambling on,
> anyway I pray everyone is off to a great New Year and good health keep the
> post’s coming
>
>
>
> Sent from the all new AOL app for iOS
> <https://apps.apple.com/us/app/aol-news-email-weather-video/id646100661>
>
> On Saturday, January 15, 2022, 11:07 AM, Carla Aarssen <
> caars...@hotmail.com> wrote:
>
> I am still here. 42yr old female C5 quadriplegic from Ontario, Canada 
>
> Get Outlook for Android <https://aka.ms/AAb9ysg>
> --
> *From:* Eric Olson 
> *Sent:* Saturday, January 15, 2022 12:41:59 PM
> *To:* Jeffrey Gaede 
> *Cc:* Edward Tessier ; quad-list@eskimo.com <
> quad-list@eskimo.com>
> *Subject:* Re: [QUAD-L] Re: Testing my email
>
> I just meant how many people are actually subscribed to the list.  I think
> most of the people that were on the list at one time have moved on to
> social media.  Shame.
>
> On Fri, Jan 14, 2022 at 11:22 AM Jeffrey Gaede  wrote:
>
> As in? Quadriplegics? Tetraplegics?
>
> On Friday, January 14, 2022, 09:18:05 AM PST, Eric Olson <
> whee...@wi.rr.com> wrote:
>
>
> I often wonder how many of us there are.
>
> On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier 
> wrote:
>
> My message got through.
>
>  Thanks everybody!
> --
> *From:* Edward Tessier
> *Sent:* Thursday, January 13, 2022 7:52 PM
> *To:* quad-list@eskimo.com 
> *Subject:* Testing my email
>
> I haven't posted in a long time that I want to make sure it still works
> with my current email.   If anybody sees this, just give me a quick howdy.
>
>  Thanks
>
>

Re: [QUAD-L] Re: Testing my email

[Jim Lubin]

I'm still alive and well.

On Sat, Jan 15, 2022 at 1:00 PM radnbada...@aol.com 
wrote:

> Ray (radnbadatpj) Still here  c/5 Prescott Valley AZ 20yrs post, miss all
> the old timers:( Jim who started this site, I think he’s still here,  W
> (Wheelchair who’s son was a quad) and he always gave awesome advice and
> just knew a bunch of stuff. Eric who’s still here, Dave from Phoenix
> injured during gymnastics meet (I think), Jim ( he did donkey trails
> little inspirational quotes on here.) Mark who was Quad Pirate, Silas,
> the farmer, Houston the gangster, who was going to college, Little Quad
> can’t remember her name, Lori who just recently passed away,  Dave from
> Texas, Boyd who at the time was the oldest member on the quad list, I think
> he was a pilot,  Joan can’t remember if it was her or Nancy who raised
> miniature horses. Greg he also lives in Arizona. These are just a few of
> the names that come to mind:-) I found this site a couple years after my
> accident and have followed it through the years. Sorry for rambling on,
> anyway I pray everyone is off to a great New Year and good health keep the
> post’s coming
>
>
>
> Sent from the all new AOL app for iOS
> <https://apps.apple.com/us/app/aol-news-email-weather-video/id646100661>
>
> On Saturday, January 15, 2022, 11:07 AM, Carla Aarssen <
> caars...@hotmail.com> wrote:
>
> I am still here. 42yr old female C5 quadriplegic from Ontario, Canada 
>
> Get Outlook for Android <https://aka.ms/AAb9ysg>
> --
> *From:* Eric Olson 
> *Sent:* Saturday, January 15, 2022 12:41:59 PM
> *To:* Jeffrey Gaede 
> *Cc:* Edward Tessier ; quad-list@eskimo.com <
> quad-list@eskimo.com>
> *Subject:* Re: [QUAD-L] Re: Testing my email
>
> I just meant how many people are actually subscribed to the list.  I think
> most of the people that were on the list at one time have moved on to
> social media.  Shame.
>
> On Fri, Jan 14, 2022 at 11:22 AM Jeffrey Gaede  wrote:
>
> As in? Quadriplegics? Tetraplegics?
>
> On Friday, January 14, 2022, 09:18:05 AM PST, Eric Olson <
> whee...@wi.rr.com> wrote:
>
>
> I often wonder how many of us there are.
>
> On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier 
> wrote:
>
> My message got through.
>
>  Thanks everybody!
> --
> *From:* Edward Tessier
> *Sent:* Thursday, January 13, 2022 7:52 PM
> *To:* quad-list@eskimo.com 
> *Subject:* Testing my email
>
> I haven't posted in a long time that I want to make sure it still works
> with my current email.   If anybody sees this, just give me a quick howdy.
>
>  Thanks
>
>

Re: [QUAD-L] Re: Testing my email

[Michelle Kephart]

Hello from Colorado! I’m a C5 quad, 13 years post. I don’t speak up often
but I’ve learned so much from all of you and I appreciate this group. ❤️

Michelle


On Sat, Jan 15, 2022 at 2:00 PM radnbada...@aol.com 
wrote:

> Ray (radnbadatpj) Still here  c/5 Prescott Valley AZ 20yrs post, miss all
> the old timers:( Jim who started this site, I think he’s still here,  W
> (Wheelchair who’s son was a quad) and he always gave awesome advice and
> just knew a bunch of stuff. Eric who’s still here, Dave from Phoenix
> injured during gymnastics meet (I think), Jim ( he did donkey trails
> little inspirational quotes on here.) Mark who was Quad Pirate, Silas,
> the farmer, Houston the gangster, who was going to college, Little Quad
> can’t remember her name, Lori who just recently passed away,  Dave from
> Texas, Boyd who at the time was the oldest member on the quad list, I think
> he was a pilot,  Joan can’t remember if it was her or Nancy who raised
> miniature horses. Greg he also lives in Arizona. These are just a few of
> the names that come to mind:-) I found this site a couple years after my
> accident and have followed it through the years. Sorry for rambling on,
> anyway I pray everyone is off to a great New Year and good health keep the
> post’s coming
>
>
>
> Sent from the all new AOL app for iOS
> <https://apps.apple.com/us/app/aol-news-email-weather-video/id646100661>
>
>
> On Saturday, January 15, 2022, 11:07 AM, Carla Aarssen <
> caars...@hotmail.com> wrote:
>
> I am still here. 42yr old female C5 quadriplegic from Ontario, Canada 
>
> Get Outlook for Android <https://aka.ms/AAb9ysg>
> --
> *From:* Eric Olson 
> *Sent:* Saturday, January 15, 2022 12:41:59 PM
> *To:* Jeffrey Gaede 
> *Cc:* Edward Tessier ; quad-list@eskimo.com <
> quad-list@eskimo.com>
> *Subject:* Re: [QUAD-L] Re: Testing my email
>
> I just meant how many people are actually subscribed to the list.  I think
> most of the people that were on the list at one time have moved on to
> social media.  Shame.
>
> On Fri, Jan 14, 2022 at 11:22 AM Jeffrey Gaede  wrote:
>
> As in? Quadriplegics? Tetraplegics?
>
> On Friday, January 14, 2022, 09:18:05 AM PST, Eric Olson <
> whee...@wi.rr.com> wrote:
>
>
> I often wonder how many of us there are.
>
> On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier 
> wrote:
>
> My message got through.
>
>  Thanks everybody!
> --
> *From:* Edward Tessier
> *Sent:* Thursday, January 13, 2022 7:52 PM
> *To:* quad-list@eskimo.com 
> *Subject:* Testing my email
>
> I haven't posted in a long time that I want to make sure it still works
> with my current email.   If anybody sees this, just give me a quick howdy.
>
>  Thanks
>
>

Re: [QUAD-L] Re: Testing my email

[radnbada...@aol.com]

Ray (radnbadatpj) Still here  c/5 Prescott Valley AZ 20yrs post, miss all the 
old timers:( Jim who started this site, I think he’s still here,  W (Wheelchair 
who’s son was a quad) and he always gave awesome advice and just knew a bunch 
of stuff. Eric who’s still here, Dave from Phoenix injured during gymnastics 
meet (I think), Jim ( he did donkey trails little inspirational quotes on 
here.) Mark who was Quad Pirate, Silas, the farmer, Houston the gangster, who 
was going to college, Little Quad can’t remember her name, Lori who just 
recently passed away,  Dave from Texas, Boyd who at the time was the oldest 
member on the quad list, I think he was a pilot,  Joan can’t remember if it was 
her or Nancy who raised miniature horses. Greg he also lives in Arizona. These 
are just a few of the names that come to mind:-) I found this site a couple 
years after my accident and have followed it through the years. Sorry for 
rambling on, anyway I pray everyone is off to a great New Year and good health 
keep the post’s coming  


Sent from the all new AOL app for iOS


On Saturday, January 15, 2022, 11:07 AM, Carla Aarssen  
wrote:

I am still here. 42yr old female C5 quadriplegic from Ontario, Canada 
Get Outlook for AndroidFrom: Eric Olson 
Sent: Saturday, January 15, 2022 12:41:59 PM
To: Jeffrey Gaede 
Cc: Edward Tessier ; quad-list@eskimo.com 

Subject: Re: [QUAD-L] Re: Testing my email I just meant how many people are 
actually subscribed to the list.  I think most of the people that were on the 
list at one time have moved on to social media.  Shame.  

On Fri, Jan 14, 2022 at 11:22 AM Jeffrey Gaede  wrote:

As in? Quadriplegics? Tetraplegics?
On Friday, January 14, 2022, 09:18:05 AM PST, Eric Olson  
wrote:

I often wonder how many of us there are.

On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier  wrote:

My message got through.
 Thanks everybody!From: Edward Tessier
Sent: Thursday, January 13, 2022 7:52 PM
To: quad-list@eskimo.com 
Subject: Testing my email I haven't posted in a long time that I want to make 
sure it still works with my current email.   If anybody sees this, just give me 
a quick howdy.
 Thanks

Re: [QUAD-L] Re: Testing my email

[Carla Aarssen]

I am still here. 42yr old female C5 quadriplegic from Ontario, Canada 

Get Outlook for Android<https://aka.ms/AAb9ysg>

From: Eric Olson 
Sent: Saturday, January 15, 2022 12:41:59 PM
To: Jeffrey Gaede 
Cc: Edward Tessier ; quad-list@eskimo.com 

Subject: Re: [QUAD-L] Re: Testing my email

I just meant how many people are actually subscribed to the list.  I think most 
of the people that were on the list at one time have moved on to social media.  
Shame.

On Fri, Jan 14, 2022 at 11:22 AM Jeffrey Gaede 
mailto:jsga...@yahoo.com>> wrote:
As in? Quadriplegics? Tetraplegics?

On Friday, January 14, 2022, 09:18:05 AM PST, Eric Olson 
mailto:whee...@wi.rr.com>> wrote:


I often wonder how many of us there are.

On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier 
mailto:e...@artecopartners.com>> wrote:
My message got through.

 Thanks everybody!

From: Edward Tessier
Sent: Thursday, January 13, 2022 7:52 PM
To: quad-list@eskimo.com<mailto:quad-list@eskimo.com> 
mailto:quad-list@eskimo.com>>
Subject: Testing my email

I haven't posted in a long time that I want to make sure it still works with my 
current email.   If anybody sees this, just give me a quick howdy.

 Thanks

Re: [QUAD-L] Re: Testing my email

[Eric Olson]

I just meant how many people are actually subscribed to the list.  I think
most of the people that were on the list at one time have moved on to
social media.  Shame.

On Fri, Jan 14, 2022 at 11:22 AM Jeffrey Gaede  wrote:

> As in? Quadriplegics? Tetraplegics?
>
> On Friday, January 14, 2022, 09:18:05 AM PST, Eric Olson <
> whee...@wi.rr.com> wrote:
>
>
> I often wonder how many of us there are.
>
> On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier 
> wrote:
>
> My message got through.
>
>  Thanks everybody!
> --
> *From:* Edward Tessier
> *Sent:* Thursday, January 13, 2022 7:52 PM
> *To:* quad-list@eskimo.com 
> *Subject:* Testing my email
>
> I haven't posted in a long time that I want to make sure it still works
> with my current email.   If anybody sees this, just give me a quick howdy.
>
>  Thanks
>
>

Re: [QUAD-L] Re: Testing my email

[Jeffrey Gaede]

 As in? Quadriplegics? Tetraplegics?
On Friday, January 14, 2022, 09:18:05 AM PST, Eric Olson 
 wrote:  
 
 I often wonder how many of us there are.

On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier  wrote:

My message got through.
 Thanks everybody!From: Edward Tessier
Sent: Thursday, January 13, 2022 7:52 PM
To: quad-list@eskimo.com 
Subject: Testing my email I haven't posted in a long time that I want to make 
sure it still works with my current email.   If anybody sees this, just give me 
a quick howdy.
 Thanks
  

Re: [QUAD-L] Re: Testing my email

[Eric Olson]

I often wonder how many of us there are.

On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier 
wrote:

> My message got through.
>
>  Thanks everybody!
> --
> *From:* Edward Tessier
> *Sent:* Thursday, January 13, 2022 7:52 PM
> *To:* quad-list@eskimo.com 
> *Subject:* Testing my email
>
> I haven't posted in a long time that I want to make sure it still works
> with my current email.   If anybody sees this, just give me a quick howdy.
>
>  Thanks
>

[QUAD-L] Re: Testing my email

[Edward Tessier]

My message got through.

 Thanks everybody!

From: Edward Tessier
Sent: Thursday, January 13, 2022 7:52 PM
To: quad-list@eskimo.com 
Subject: Testing my email

I haven't posted in a long time that I want to make sure it still works with my 
current email.   If anybody sees this, just give me a quick howdy.

 Thanks

[QUAD-L] Re: [QUAD-I received From United spinal cord injury Association

[Dana Wray]

  I thought you might be interested in filling it out Thank you Dana
[image: United Spinal 75: Building an Inclusive World]

As September draws to a close, United Spinal wants to make sure that we are
keeping up the pressure on Congress to pass important priorities for our
community. Please take a few moments to send these action alerts to your
elected officials in Congress.

*Fully Fund Caregiving in the Build Back Better Act*

Funding for Medicaid home and community-based services (HCBS), which helps
to keep people with disabilities in our own homes and part of our
communities, has long been neglected. People get stuck on waiting lists for
years. The direct care workforce is underpaid. Family members are often
forced to become unpaid caregivers for their loved ones.

Congress is currently considering the Build Back Better Act, legislation
that includes many updates to the social safety net, such as Medicare and
Medicaid. Please tell Congress to include full funding for caregivingin
this bill!
[image: Take Action]


*Include SSI Reforms in the Build Back Better Act*

For many people with disabilities, Supplemental Security Income (SSI) can
be a lifeline. However, many of the provisions relating to eligibility,
such as rules regarding additional earned income and the amount of assets
an individual or a married couple may retain, have not been updated in 30
years or more, and as a result both income and assets have not kept up with
inflation and are unnecessarily punitive to people with disabilities.

Please tell Congress to include long-overdue updates to SSI in the Build
Back Better Act!
[image: Take Action]


*Make Transportation More Accessible and Accountable to the Disability
Community*

United Spinal worked with disability champions Rep. Jim Langevin (D-RI),
Rep. Dina Titus (D-NV), and Sen. Bob Menendez (D-NJ) to introduce the
Disability Access to Transportation Act (H.R. 1697/S. 2038).  This bill
addresses some of the biggest needs that people with disabilities have with
our transportation system by improving paratransit, increasing
accountability for transportation providers, and providing more funding to
transportation agencies to provide services for people with disabilities.

Please take a moment to ask your members of Congress to cosponsor this bill.
[image: Take Action]


With just a few clicks, you are truly making a big difference for our
community.   With your help, let's work together to get our community's
priorities across the finish line.

Thank you all,

Steve Lieberman

Director, Policy & Advocacy, United Spinal Association
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You have received this message because you have subscribed to a mailing
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emails from this source, please click below to unsubscribe.
Click here
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[image: Powered by VoterVoice] 

[QUAD-L] Re: [QUAD-LIST Sharing personal care agreements

[Dana Wray]

Hi my friends at the quad-list,
Is there anyone that would be able to share their contracts or agreements
they have with their daily and nightly caregivers. I don’t have one and I
would like to get examples to use to write one for myself.

I would appreciate everyone’s assistance. I am grateful for this group
Thank you,
Dana Wray
C 4-5 47 years post in July. Tracheostomy, ileo-conduit From bladder
cancer, colon cancer and respiratory difficulties.

[QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

[Ed Tessier]

nurse is.  Craig specializes in SCI and their free online Q sessions can
>>> be super helpful.  When I was 13 yrs post-injury, I had what is called a
>>> tethered cord... a situation where the spinal cord attaches to the dura (or
>>> duramatter, the very tough surrounding tissue enclosing the brain and
>>> spinal cord) and causes a strain or pull on that section as you move
>>> around.  My symptoms were similar but maybe not as severe as what you
>>> described.  Plus i had a lot of pain in one shoulder.  (But again, it's
>>> different for all of us.)  There wasn't much of a public internet to speak
>>> of at the time I had it but they pretty much diagnosed me over the phone,
>>> asking for an MRI just to verify their suspicions.  The tether caused a
>>> syrinx enough that even I could see it on the films without medical
>>> knowledge.
>>>  I went for a surgery that detached the cord from the dura and they
>>> added tissue to make the area around the cord a bit larger.  It was INSTANT
>>> relief of pain & sweating when I woke from surgery!!
>>>  I hope that helps some.  I could be 100% wrong, too, but it
>>> wouldn't be a bad idea to look into it if you haven't already.  I've heard
>>> these similar symptoms from several quads.
>>>
>>> Best wishes & good luck,
>>> --Tod
>>>
>>>
>>> On Sunday, November 8, 2020, Carla Aarssen  wrote:
>>>
>>>> I am a C5 quad 18yrs now and for the last 10 or so have on and off
>>>> issues with profuse sweating that lasts from minutes to weeks. Sometimes it
>>>> is entire upper body sometimes it is only one side (not always same side)
>>>> Sometimes I am cold well sweating sometimes I am hot. No doctor seems to
>>>> think it is "worth" looking into but I know it is uncomfortable,
>>>> embarrassing and greatly affects my daily living. My bowels move daily but
>>>> not always much? My roho cushion is checked regularly. I have no skin
>>>> issues. I drink plenty of juice and water...Any thoughts, ideas and/or
>>>> suggestions? Thanks in advance. Enjoy your day 
>>>>
>>>> Get Outlook for Android <https://aka.ms/ghei36>
>>>>
>>>> --
>>>> *From:* Tod Santee 
>>>> *Sent:* Saturday, November 7, 2020 3:23:41 PM
>>>> *To:* Robert Vogel ; quad-list 
>>>> *Subject:* [QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care
>>>>
>>>> Hi Robert,
>>>>  Thanks for the very detailed info about this Peristeen / Coloplast
>>>> system!  I had never heard of it until you and another person here
>>>> mentioned it.
>>>>  I'm glad to hear how well it works for you and especially happy to
>>>> hear it from a fellow diver!  Given its easy-sounding portability I'll be
>>>> looking at this one a bit closer now, too.  (Hopefully having more than one
>>>> option doesn't complicate things! LOL!!)
>>>>
>>>> Best wishes,
>>>> --Tod
>>>>
>>>>
>>>> On Friday, November 6, 2020, Robert Vogel  wrote:
>>>>
>>>> Hi Todd,
>>>>
>>>> From my ’survey of one’ first look into ’trans anal irrigation’ as in
>>>> the Peristeen system by Coloplast. It is
>>>> similar (and different) than the PIE system. It is small (fits into a
>>>> shaving kit size bag), light and portable.
>>>> It consists of a clear plastic (soft) container that can hold up to
>>>> 1500cc of tap water, tubing, a small hand-squeeze
>>>> pump, a controller, and the key—a disposal rectal foley catheter. You
>>>> fill up the Peristeen bag with luke warm tap
>>>> water—however much works for you—everybody is different, the average
>>>> amount is around 500-600cc of water.
>>>> Next insert the rectal foley into your rectum—next there is a simple
>>>> plastic ‘dial’ controller, you turn the dial to
>>>> inflate, squeeze the rubber-ball like pump once or twice—this inflates
>>>> the foley balloon which holds the catheter
>>>> into your rectum and prevents any water from coming out. Next you turn
>>>> the dial to ‘water’ and start squeezing
>>>> the ball to fill up your large intestine with water, which generally
>>>> goes about 1/2 way into your large intestine, that’s
>>>> about 2 1/2 feet. Then turn the dial to ‘deflate’ remove the rectal
>>>> fo

[QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

[Tod Santee]

p; good luck,
>> --Tod
>>
>>
>> On Sunday, November 8, 2020, Carla Aarssen  wrote:
>>
>>> I am a C5 quad 18yrs now and for the last 10 or so have on and off
>>> issues with profuse sweating that lasts from minutes to weeks. Sometimes it
>>> is entire upper body sometimes it is only one side (not always same side)
>>> Sometimes I am cold well sweating sometimes I am hot. No doctor seems to
>>> think it is "worth" looking into but I know it is uncomfortable,
>>> embarrassing and greatly affects my daily living. My bowels move daily but
>>> not always much? My roho cushion is checked regularly. I have no skin
>>> issues. I drink plenty of juice and water...Any thoughts, ideas and/or
>>> suggestions? Thanks in advance. Enjoy your day 
>>>
>>> Get Outlook for Android <https://aka.ms/ghei36>
>>>
>>> --
>>> *From:* Tod Santee 
>>> *Sent:* Saturday, November 7, 2020 3:23:41 PM
>>> *To:* Robert Vogel ; quad-list 
>>> *Subject:* [QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care
>>>
>>> Hi Robert,
>>>  Thanks for the very detailed info about this Peristeen / Coloplast
>>> system!  I had never heard of it until you and another person here
>>> mentioned it.
>>>  I'm glad to hear how well it works for you and especially happy to
>>> hear it from a fellow diver!  Given its easy-sounding portability I'll be
>>> looking at this one a bit closer now, too.  (Hopefully having more than one
>>> option doesn't complicate things! LOL!!)
>>>
>>> Best wishes,
>>> --Tod
>>>
>>>
>>> On Friday, November 6, 2020, Robert Vogel  wrote:
>>>
>>> Hi Todd,
>>>
>>> From my ’survey of one’ first look into ’trans anal irrigation’ as in
>>> the Peristeen system by Coloplast. It is
>>> similar (and different) than the PIE system. It is small (fits into a
>>> shaving kit size bag), light and portable.
>>> It consists of a clear plastic (soft) container that can hold up to
>>> 1500cc of tap water, tubing, a small hand-squeeze
>>> pump, a controller, and the key—a disposal rectal foley catheter. You
>>> fill up the Peristeen bag with luke warm tap
>>> water—however much works for you—everybody is different, the average
>>> amount is around 500-600cc of water.
>>> Next insert the rectal foley into your rectum—next there is a simple
>>> plastic ‘dial’ controller, you turn the dial to
>>> inflate, squeeze the rubber-ball like pump once or twice—this inflates
>>> the foley balloon which holds the catheter
>>> into your rectum and prevents any water from coming out. Next you turn
>>> the dial to ‘water’ and start squeezing
>>> the ball to fill up your large intestine with water, which generally
>>> goes about 1/2 way into your large intestine, that’s
>>> about 2 1/2 feet. Then turn the dial to ‘deflate’ remove the rectal
>>> foley and wait. The tap water does two things, it
>>> softens and lubricates stool in your colon, and it acts as a mild
>>> stimulate which causes the colon to contract.
>>>
>>> In my experience the entire process takes about 40 minutes and empties
>>> me out like nothing I’ve tried in 35-years.
>>> CT scans with contrast show that Peristeen empties out 2 1/2 feet of
>>> colon—the average bowel program and/or
>>> the average non-disabled person having a bowel movement only empties
>>> about 6-8 inches of colon. It empties
>>> me out so much that I only have to go every other day and I haven’t had
>>> an accident in the 8-years since I’ve
>>> been using it.
>>>
>>> I find it is great for use at home, even better when travel, especially
>>> on dive trips when I want to be extra cleaned
>>> out.
>>>
>>> Caveat, you need a prescription from your doctor and need to be trained
>>> by a Peristeen trainer, which can be
>>> arranged through Coloplast but takes time. And insurance coverage is
>>> spotty at best.
>>>
>>> Here is the link:  https://products.coloplast.
>>> us/coloplast/continence-care/peristeen/peristeen-tai/
>>> peristeen-balloon-catheter/peristeen-anal-irrigation-system/
>>>
>>> I hope this helps.
>>> Bob Vogel
>>>
>>> On Nov 6, 2020, at 3:31 PM, Tod Santee  wrote:
>>>
>>> Hi Everybody!
>>>  Some of you might remember me.  I'm a moldy, oldie at the Q-List
>&g

Re: [QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

[Ed Tessier]

I also have the same problems you did. My switch to peristeen ( I
participated in one of their early trials for SCI candidates)  has been a
complete game changer.

 much quicker system-- approximately one hour
 much less pain and discomfort
 much less incontinence-- I went from an accident every few weeks to maybe
once every three or four months
 almost never any problems with constipation

 the price of the system is  a little steep... but with all of these
advantages, and being able to travel, and getting so much time back, I
couldn't imagine doing it any other way. if it ever goes off the market I'm
in trouble.

 Ed



On Tue, Nov 10, 2020 at 4:53 PM Tod Santee  wrote:

> Hi Carla,
>  I'm not sure what kind of doc(s) you're seeing, but in my 37 yrs I've
> found many doctors will quickly dismiss quad's complaints as just something
> to get used to unless they are pretty well versed in spinal cord injuries
> and the unusual complications we face.  Almost any such doc would know that
> sweating of any significant amount by a quad is very, very rarely "nothing
> worth looking into."  The differences in times, types and amounts of
> sweating you describe with no outwardly obvious reasons would make me want
> to seek info from a neurologist with experience with quads.  My first
> suggestion would be to try to keep a daily journal to include when the
> sweating starts and what you were doing and even something as simple as
> what position you were in just before it started (i.e. were you sitting
> still, reaching, transferring, doing a bowel routine or exercise, etc.) and
> is any of it accompanied by pain in the shoulder, neck, or even a side of
> your ribs or abdomen.
>  My first guess would be a syrinx...  it's likely been mentioned here
> before but if you haven't heard of it, it's a stretch or longitudinal
> (lenghtwise) opening between fibers of the spinal cord that fills with
> cerebrospinal fluid.  It can cause all manner of weird symptoms from pain
> to sweating to occasional or continuing weakness.  To the best of my
> knowledge, the only definitive way to diagnose a syrinx with certainty is
> with an MRI.
>  One thing I might suggest is to look into Craig Rehab Hospital's
> website (they're in Denver)  and see when their next online Q with a
> nurse is.  Craig specializes in SCI and their free online Q sessions can
> be super helpful.  When I was 13 yrs post-injury, I had what is called a
> tethered cord... a situation where the spinal cord attaches to the dura (or
> duramatter, the very tough surrounding tissue enclosing the brain and
> spinal cord) and causes a strain or pull on that section as you move
> around.  My symptoms were similar but maybe not as severe as what you
> described.  Plus i had a lot of pain in one shoulder.  (But again, it's
> different for all of us.)  There wasn't much of a public internet to speak
> of at the time I had it but they pretty much diagnosed me over the phone,
> asking for an MRI just to verify their suspicions.  The tether caused a
> syrinx enough that even I could see it on the films without medical
> knowledge.
>  I went for a surgery that detached the cord from the dura and they
> added tissue to make the area around the cord a bit larger.  It was INSTANT
> relief of pain & sweating when I woke from surgery!!
>  I hope that helps some.  I could be 100% wrong, too, but it wouldn't
> be a bad idea to look into it if you haven't already.  I've heard these
> similar symptoms from several quads.
>
> Best wishes & good luck,
> --Tod
>
>
> On Sunday, November 8, 2020, Carla Aarssen  wrote:
>
>> I am a C5 quad 18yrs now and for the last 10 or so have on and off issues
>> with profuse sweating that lasts from minutes to weeks. Sometimes it is
>> entire upper body sometimes it is only one side (not always same side)
>> Sometimes I am cold well sweating sometimes I am hot. No doctor seems to
>> think it is "worth" looking into but I know it is uncomfortable,
>> embarrassing and greatly affects my daily living. My bowels move daily but
>> not always much? My roho cushion is checked regularly. I have no skin
>> issues. I drink plenty of juice and water...Any thoughts, ideas and/or
>> suggestions? Thanks in advance. Enjoy your day 
>>
>> Get Outlook for Android <https://aka.ms/ghei36>
>>
>> --
>> *From:* Tod Santee 
>> *Sent:* Saturday, November 7, 2020 3:23:41 PM
>> *To:* Robert Vogel ; quad-list 
>> *Subject:* [QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care
>>
>> Hi Robert,
>>  Thanks for the very detailed info about this Peristeen / Coloplast
>> system!  I had never heard of it until you and another person 

[QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

[Tod Santee]

Hi Carla,
 I'm not sure what kind of doc(s) you're seeing, but in my 37 yrs I've
found many doctors will quickly dismiss quad's complaints as just something
to get used to unless they are pretty well versed in spinal cord injuries
and the unusual complications we face.  Almost any such doc would know that
sweating of any significant amount by a quad is very, very rarely "nothing
worth looking into."  The differences in times, types and amounts of
sweating you describe with no outwardly obvious reasons would make me want
to seek info from a neurologist with experience with quads.  My first
suggestion would be to try to keep a daily journal to include when the
sweating starts and what you were doing and even something as simple as
what position you were in just before it started (i.e. were you sitting
still, reaching, transferring, doing a bowel routine or exercise, etc.) and
is any of it accompanied by pain in the shoulder, neck, or even a side of
your ribs or abdomen.
 My first guess would be a syrinx...  it's likely been mentioned here
before but if you haven't heard of it, it's a stretch or longitudinal
(lenghtwise) opening between fibers of the spinal cord that fills with
cerebrospinal fluid.  It can cause all manner of weird symptoms from pain
to sweating to occasional or continuing weakness.  To the best of my
knowledge, the only definitive way to diagnose a syrinx with certainty is
with an MRI.
 One thing I might suggest is to look into Craig Rehab Hospital's
website (they're in Denver)  and see when their next online Q with a
nurse is.  Craig specializes in SCI and their free online Q sessions can
be super helpful.  When I was 13 yrs post-injury, I had what is called a
tethered cord... a situation where the spinal cord attaches to the dura (or
duramatter, the very tough surrounding tissue enclosing the brain and
spinal cord) and causes a strain or pull on that section as you move
around.  My symptoms were similar but maybe not as severe as what you
described.  Plus i had a lot of pain in one shoulder.  (But again, it's
different for all of us.)  There wasn't much of a public internet to speak
of at the time I had it but they pretty much diagnosed me over the phone,
asking for an MRI just to verify their suspicions.  The tether caused a
syrinx enough that even I could see it on the films without medical
knowledge.
 I went for a surgery that detached the cord from the dura and they
added tissue to make the area around the cord a bit larger.  It was INSTANT
relief of pain & sweating when I woke from surgery!!
 I hope that helps some.  I could be 100% wrong, too, but it wouldn't
be a bad idea to look into it if you haven't already.  I've heard these
similar symptoms from several quads.

Best wishes & good luck,
--Tod


On Sunday, November 8, 2020, Carla Aarssen  wrote:

> I am a C5 quad 18yrs now and for the last 10 or so have on and off issues
> with profuse sweating that lasts from minutes to weeks. Sometimes it is
> entire upper body sometimes it is only one side (not always same side)
> Sometimes I am cold well sweating sometimes I am hot. No doctor seems to
> think it is "worth" looking into but I know it is uncomfortable,
> embarrassing and greatly affects my daily living. My bowels move daily but
> not always much? My roho cushion is checked regularly. I have no skin
> issues. I drink plenty of juice and water...Any thoughts, ideas and/or
> suggestions? Thanks in advance. Enjoy your day 
>
> Get Outlook for Android <https://aka.ms/ghei36>
>
> --
> *From:* Tod Santee 
> *Sent:* Saturday, November 7, 2020 3:23:41 PM
> *To:* Robert Vogel ; quad-list 
> *Subject:* [QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care
>
> Hi Robert,
>  Thanks for the very detailed info about this Peristeen / Coloplast
> system!  I had never heard of it until you and another person here
> mentioned it.
>  I'm glad to hear how well it works for you and especially happy to
> hear it from a fellow diver!  Given its easy-sounding portability I'll be
> looking at this one a bit closer now, too.  (Hopefully having more than one
> option doesn't complicate things! LOL!!)
>
> Best wishes,
> --Tod
>
>
> On Friday, November 6, 2020, Robert Vogel  wrote:
>
> Hi Todd,
>
> From my ’survey of one’ first look into ’trans anal irrigation’ as in the
> Peristeen system by Coloplast. It is
> similar (and different) than the PIE system. It is small (fits into a
> shaving kit size bag), light and portable.
> It consists of a clear plastic (soft) container that can hold up to 1500cc
> of tap water, tubing, a small hand-squeeze
> pump, a controller, and the key—a disposal rectal foley catheter. You fill
> up the Peristeen bag with luke warm tap
> water—however much works for you—everybody is different, the average
>

Re: [QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

[Aaron Mann]

Before my colostomy, lifesaver btw, I ate three fiber gummies a day. Stool
was never too hard, bowel program took on average 30-45 min. (Adjust the
number based on consistency)

https://www.amazon.com/gp/product/B00RGDNV8C/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8=1


Aaron Mann


On Sun, Nov 8, 2020 at 1:11 PM Carla Aarssen  wrote:

> I am a C5 quad 18yrs now and for the last 10 or so have on and off issues
> with profuse sweating that lasts from minutes to weeks. Sometimes it is
> entire upper body sometimes it is only one side (not always same side)
> Sometimes I am cold well sweating sometimes I am hot. No doctor seems to
> think it is "worth" looking into but I know it is uncomfortable,
> embarrassing and greatly affects my daily living. My bowels move daily but
> not always much? My roho cushion is checked regularly. I have no skin
> issues. I drink plenty of juice and water...Any thoughts, ideas and/or
> suggestions? Thanks in advance. Enjoy your day 
>
> Get Outlook for Android <https://aka.ms/ghei36>
>
> --
> *From:* Tod Santee 
> *Sent:* Saturday, November 7, 2020 3:23:41 PM
> *To:* Robert Vogel ; quad-list 
> *Subject:* [QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care
>
> Hi Robert,
>  Thanks for the very detailed info about this Peristeen / Coloplast
> system!  I had never heard of it until you and another person here
> mentioned it.
>  I'm glad to hear how well it works for you and especially happy to
> hear it from a fellow diver!  Given its easy-sounding portability I'll be
> looking at this one a bit closer now, too.  (Hopefully having more than one
> option doesn't complicate things! LOL!!)
>
> Best wishes,
> --Tod
>
>
> On Friday, November 6, 2020, Robert Vogel  wrote:
>
> Hi Todd,
>
> From my ’survey of one’ first look into ’trans anal irrigation’ as in the
> Peristeen system by Coloplast. It is
> similar (and different) than the PIE system. It is small (fits into a
> shaving kit size bag), light and portable.
> It consists of a clear plastic (soft) container that can hold up to 1500cc
> of tap water, tubing, a small hand-squeeze
> pump, a controller, and the key—a disposal rectal foley catheter. You fill
> up the Peristeen bag with luke warm tap
> water—however much works for you—everybody is different, the average
> amount is around 500-600cc of water.
> Next insert the rectal foley into your rectum—next there is a simple
> plastic ‘dial’ controller, you turn the dial to
> inflate, squeeze the rubber-ball like pump once or twice—this inflates the
> foley balloon which holds the catheter
> into your rectum and prevents any water from coming out. Next you turn the
> dial to ‘water’ and start squeezing
> the ball to fill up your large intestine with water, which generally goes
> about 1/2 way into your large intestine, that’s
> about 2 1/2 feet. Then turn the dial to ‘deflate’ remove the rectal foley
> and wait. The tap water does two things, it
> softens and lubricates stool in your colon, and it acts as a mild
> stimulate which causes the colon to contract.
>
> In my experience the entire process takes about 40 minutes and empties me
> out like nothing I’ve tried in 35-years.
> CT scans with contrast show that Peristeen empties out 2 1/2 feet of
> colon—the average bowel program and/or
> the average non-disabled person having a bowel movement only empties about
> 6-8 inches of colon. It empties
> me out so much that I only have to go every other day and I haven’t had an
> accident in the 8-years since I’ve
> been using it.
>
> I find it is great for use at home, even better when travel, especially on
> dive trips when I want to be extra cleaned
> out.
>
> Caveat, you need a prescription from your doctor and need to be trained by
> a Peristeen trainer, which can be
> arranged through Coloplast but takes time. And insurance coverage is
> spotty at best.
>
> Here is the link:
> https://products.coloplast.us/coloplast/continence-care/peristeen/peristeen-tai/peristeen-balloon-catheter/peristeen-anal-irrigation-system/
>
> I hope this helps.
> Bob Vogel
>
> On Nov 6, 2020, at 3:31 PM, Tod Santee  wrote:
>
> Hi Everybody!
>  Some of you might remember me.  I'm a moldy, oldie at the Q-List
> since the mid-90s maybe, but since I haven't checked in for a long time I
> guess I'm a bit of a newbie to many here, too.  I'm a male C5-6 Quad, 37
> yrs post injury from a fall from a tree.
>  So first off... "Hi!" to all my old friends & acquaintances here.
> And, looking forward to meeting those who are "new" since I stopped posting
> and following closely.
>  My MAIN reason for writing, tho, is this:  For many years... al

Re: [QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

[Carla Aarssen]

I am a C5 quad 18yrs now and for the last 10 or so have on and off issues with 
profuse sweating that lasts from minutes to weeks. Sometimes it is entire upper 
body sometimes it is only one side (not always same side) Sometimes I am cold 
well sweating sometimes I am hot. No doctor seems to think it is "worth" 
looking into but I know it is uncomfortable, embarrassing and greatly affects 
my daily living. My bowels move daily but not always much? My roho cushion is 
checked regularly. I have no skin issues. I drink plenty of juice and 
water...Any thoughts, ideas and/or suggestions? Thanks in advance. Enjoy your 
day 

Get Outlook for Android<https://aka.ms/ghei36>


From: Tod Santee 
Sent: Saturday, November 7, 2020 3:23:41 PM
To: Robert Vogel ; quad-list 
Subject: [QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

Hi Robert,
 Thanks for the very detailed info about this Peristeen / Coloplast system! 
 I had never heard of it until you and another person here mentioned it.
 I'm glad to hear how well it works for you and especially happy to hear it 
from a fellow diver!  Given its easy-sounding portability I'll be looking at 
this one a bit closer now, too.  (Hopefully having more than one option doesn't 
complicate things! LOL!!)

Best wishes,
--Tod


On Friday, November 6, 2020, Robert Vogel 
mailto:rhvsh...@me.com>> wrote:
Hi Todd,

From my ’survey of one’ first look into ’trans anal irrigation’ as in the 
Peristeen system by Coloplast. It is
similar (and different) than the PIE system. It is small (fits into a shaving 
kit size bag), light and portable.
It consists of a clear plastic (soft) container that can hold up to 1500cc of 
tap water, tubing, a small hand-squeeze
pump, a controller, and the key—a disposal rectal foley catheter. You fill up 
the Peristeen bag with luke warm tap
water—however much works for you—everybody is different, the average amount is 
around 500-600cc of water.
Next insert the rectal foley into your rectum—next there is a simple plastic 
‘dial’ controller, you turn the dial to
inflate, squeeze the rubber-ball like pump once or twice—this inflates the 
foley balloon which holds the catheter
into your rectum and prevents any water from coming out. Next you turn the dial 
to ‘water’ and start squeezing
the ball to fill up your large intestine with water, which generally goes about 
1/2 way into your large intestine, that’s
about 2 1/2 feet. Then turn the dial to ‘deflate’ remove the rectal foley and 
wait. The tap water does two things, it
softens and lubricates stool in your colon, and it acts as a mild stimulate 
which causes the colon to contract.

In my experience the entire process takes about 40 minutes and empties me out 
like nothing I’ve tried in 35-years.
CT scans with contrast show that Peristeen empties out 2 1/2 feet of colon—the 
average bowel program and/or
the average non-disabled person having a bowel movement only empties about 6-8 
inches of colon. It empties
me out so much that I only have to go every other day and I haven’t had an 
accident in the 8-years since I’ve
been using it.

I find it is great for use at home, even better when travel, especially on dive 
trips when I want to be extra cleaned
out.

Caveat, you need a prescription from your doctor and need to be trained by a 
Peristeen trainer, which can be
arranged through Coloplast but takes time. And insurance coverage is spotty at 
best.

Here is the link:  
https://products.coloplast.us/coloplast/continence-care/peristeen/peristeen-tai/peristeen-balloon-catheter/peristeen-anal-irrigation-system/

I hope this helps.
Bob Vogel

On Nov 6, 2020, at 3:31 PM, Tod Santee 
mailto:mr.san...@gmail.com>> wrote:

Hi Everybody!
 Some of you might remember me.  I'm a moldy, oldie at the Q-List since the 
mid-90s maybe, but since I haven't checked in for a long time I guess I'm a bit 
of a newbie to many here, too.  I'm a male C5-6 Quad, 37 yrs post injury from a 
fall from a tree.
 So first off... "Hi!" to all my old friends & acquaintances here.  And, 
looking forward to meeting those who are "new" since I stopped posting and 
following closely.
 My MAIN reason for writing, tho, is this:  For many years... almost since 
the beginning of this "new normal" life... my bowel routine would take 3-4 hrs 
from suppository (or whatever other kind of bowel stimulant) to finish with a 
whole lot of digital stimulation along the way.  It's always been (pardon the 
pun) a pain in the ass!  I'm sure I'm alone on that last bit!! LOL!
 Problem is, lately I've been waiting just as long but now sweating like 
crazy throughout the majority of that time.  A colonoscopy shows no 
irregularities other than some minor exterior hemorrhoids that I've had for at 
least 30yrs... i.e. no change there.
 So I'm looking for a change in process and I've been encouraged to look 
into the P.I.E. system (P.I.E. = someth

[QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

[Tod Santee]

Hi Robert,
 Thanks for the very detailed info about this Peristeen / Coloplast
system!  I had never heard of it until you and another person here
mentioned it.
 I'm glad to hear how well it works for you and especially happy to
hear it from a fellow diver!  Given its easy-sounding portability I'll be
looking at this one a bit closer now, too.  (Hopefully having more than one
option doesn't complicate things! LOL!!)

Best wishes,
--Tod


On Friday, November 6, 2020, Robert Vogel  wrote:

> Hi Todd,
>
> From my ’survey of one’ first look into ’trans anal irrigation’ as in the
> Peristeen system by Coloplast. It is
> similar (and different) than the PIE system. It is small (fits into a
> shaving kit size bag), light and portable.
> It consists of a clear plastic (soft) container that can hold up to 1500cc
> of tap water, tubing, a small hand-squeeze
> pump, a controller, and the key—a disposal rectal foley catheter. You fill
> up the Peristeen bag with luke warm tap
> water—however much works for you—everybody is different, the average
> amount is around 500-600cc of water.
> Next insert the rectal foley into your rectum—next there is a simple
> plastic ‘dial’ controller, you turn the dial to
> inflate, squeeze the rubber-ball like pump once or twice—this inflates the
> foley balloon which holds the catheter
> into your rectum and prevents any water from coming out. Next you turn the
> dial to ‘water’ and start squeezing
> the ball to fill up your large intestine with water, which generally goes
> about 1/2 way into your large intestine, that’s
> about 2 1/2 feet. Then turn the dial to ‘deflate’ remove the rectal foley
> and wait. The tap water does two things, it
> softens and lubricates stool in your colon, and it acts as a mild
> stimulate which causes the colon to contract.
>
> In my experience the entire process takes about 40 minutes and empties me
> out like nothing I’ve tried in 35-years.
> CT scans with contrast show that Peristeen empties out 2 1/2 feet of
> colon—the average bowel program and/or
> the average non-disabled person having a bowel movement only empties about
> 6-8 inches of colon. It empties
> me out so much that I only have to go every other day and I haven’t had an
> accident in the 8-years since I’ve
> been using it.
>
> I find it is great for use at home, even better when travel, especially on
> dive trips when I want to be extra cleaned
> out.
>
> Caveat, you need a prescription from your doctor and need to be trained by
> a Peristeen trainer, which can be
> arranged through Coloplast but takes time. And insurance coverage is
> spotty at best.
>
> Here is the link:  https://products.coloplast.
> us/coloplast/continence-care/peristeen/peristeen-tai/
> peristeen-balloon-catheter/peristeen-anal-irrigation-system/
>
> I hope this helps.
> Bob Vogel
>
> On Nov 6, 2020, at 3:31 PM, Tod Santee  wrote:
>
> Hi Everybody!
>  Some of you might remember me.  I'm a moldy, oldie at the Q-List
> since the mid-90s maybe, but since I haven't checked in for a long time I
> guess I'm a bit of a newbie to many here, too.  I'm a male C5-6 Quad, 37
> yrs post injury from a fall from a tree.
>  So first off... "Hi!" to all my old friends & acquaintances here.
> And, looking forward to meeting those who are "new" since I stopped posting
> and following closely.
>  My MAIN reason for writing, tho, is this:  For many years... almost
> since the beginning of this "new normal" life... my bowel routine would
> take 3-4 hrs from suppository (or whatever other kind of bowel stimulant)
> to finish with a whole lot of digital stimulation along the way.  It's
> always been (pardon the pun) a pain in the ass!  I'm sure I'm alone on that
> last bit!! LOL!
>  Problem is, lately I've been waiting just as long but now sweating
> like crazy throughout the majority of that time.  A colonoscopy shows no
> irregularities other than some minor exterior hemorrhoids that I've had for
> at least 30yrs... i.e. no change there.
>  So I'm looking for a change in process and I've been encouraged to
> look into the P.I.E. system (P.I.E. = something like "Pulsed Irrigated
> Evacuation.") that uses a catheter to fill the bowel with water and let it
> empty into a container (lather, rinse, repeat until done). I looked it up
> online & it has a pretty decent animated video of how it works.  BUT, it's
> big & I'd guess expensive if insurance doesn't cover it.
>  I figured I'd turn to the experts here to see if anybody has tried
> this, how well it worked --our not-- and how you'd deal with things if/when
> traveling.  My wife and I enjoy world travel to not-so-accessible locations
> for scuba diving trips... at least up until a year ago.
>  Any ideas or opinions on this P.I.E. system from anybody familiar
> with it would be SUPER appreciated!!!
>
> Thanks All,
> --Tod
>
>
>

[QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care

[Tod Santee]

Hi Eddie...
 Thanks for the info.  Somebody else suggested this as an option that
might even be better with regard to its size and portability.  Any
info/input I get is helpful since all I know so far is only what I've seen
published by the makers of the PIE.  Similar systems (I knew there had to
be some) are great to hear about.

Thank you,
--Tod


On Saturday, November 7, 2020, Eddie  wrote:

> I don't use it, but have you heard of Peristeen?
> https://products.coloplast.us/coloplast/continence-care/
> peristeen/peristeen-tai/peristeen-balloon-catheter/
> peristeen-anal-irrigation-system/
>
> On Fri, Nov 6, 2020 at 4:31 PM Tod Santee  wrote:
> >
> > Hi Everybody!
> >  Some of you might remember me.  I'm a moldy, oldie at the Q-List
> since the mid-90s maybe, but since I haven't checked in for a long time I
> guess I'm a bit of a newbie to many here, too.  I'm a male C5-6 Quad, 37
> yrs post injury from a fall from a tree.
> >  So first off... "Hi!" to all my old friends & acquaintances here.
> And, looking forward to meeting those who are "new" since I stopped posting
> and following closely.
> >  My MAIN reason for writing, tho, is this:  For many years... almost
> since the beginning of this "new normal" life... my bowel routine would
> take 3-4 hrs from suppository (or whatever other kind of bowel stimulant)
> to finish with a whole lot of digital stimulation along the way.  It's
> always been (pardon the pun) a pain in the ass!  I'm sure I'm alone on that
> last bit!! LOL!
> >  Problem is, lately I've been waiting just as long but now sweating
> like crazy throughout the majority of that time.  A colonoscopy shows no
> irregularities other than some minor exterior hemorrhoids that I've had for
> at least 30yrs... i.e. no change there.
> >  So I'm looking for a change in process and I've been encouraged to
> look into the P.I.E. system (P.I.E. = something like "Pulsed Irrigated
> Evacuation.") that uses a catheter to fill the bowel with water and let it
> empty into a container (lather, rinse, repeat until done). I looked it up
> online & it has a pretty decent animated video of how it works.  BUT, it's
> big & I'd guess expensive if insurance doesn't cover it.
> >  I figured I'd turn to the experts here to see if anybody has tried
> this, how well it worked --our not-- and how you'd deal with things if/when
> traveling.  My wife and I enjoy world travel to not-so-accessible locations
> for scuba diving trips... at least up until a year ago.
> >  Any ideas or opinions on this P.I.E. system from anybody familiar
> with it would be SUPER appreciated!!!
> >
> > Thanks All,
> > --Tod
> >
>

RE: [QUAD-L] Re: Just checking in.

[Nichole Rohling]

Doing well Nancy

We had 1 case in our community of about 2,500 people. 

I have 4 caregivers so I pray they stay well.

 

Nicki

 

From: Eric Olson [mailto:whee...@wi.rr.com] 
Sent: Monday, April 27, 2020 1:28 PM
To: Shirley Bell
Cc: Jim Lubin; Quad-list@eskimo.com
Subject: Re: [QUAD-L] Re: Just checking in.

 

Not yet, but I fear the worst of it will come in the fall.  It's probably just 
my own paranoia, but I worry more about a "second wave"  It might not happen 
but I worry about sending my daughter back to school in September.  All my 
caregivers have school aged children too.  I hope they move cautiously.  It 
would be much easier for upper grades to do then grade school kids.   9th and 
10th grade has in person school on Monday and Tuesday and online school 
Wednesday - Friday.  Some kind of staggering as opposed to all kids all 
together all week long.  I realize this is probably not realistic for poorer 
school districts.  What about fall sports for the kids?  I hope a "second wave" 
never comes, but I have to have something to worry about lol.

 

On Mon, Apr 27, 2020 at 12:01 PM Shirley Bell  wrote:

I am good in RI. are any of you having trouble getting aids to come?? be well

 

From: Jim Lubin 

Sent: Monday, April 27, 2020 12:24 PM

To: Nancy 

Cc: Quad-list 

Subject: [QUAD-L] Re: Just checking in.

 

I'm doing good. Hope you are doing well

 

On Mon, Apr 27, 2020 at 7:13 AM Nancy  wrote:

Just want to know how you all are doing. Thinking of you all!

 

Nan

Re: [QUAD-L] Re: Just checking in.

[Lori Michaelson]

I have not doing well at all. After my live-in caregiver leaves I have
nowhere to go when I have checked into EVERYTHING. I have been advertising
in all the right places since I found out she was leaving in January. I
thought I had someone recently that I know but she never followed up. Very
unlike her no matter what. So, when I say I have nowhere to go I mean that
literally. I could afford a studio apartment  but living in one room with
my level of care will cost about $7000/month and they are not even open for
tours of their place yet because of Covid-19 And it doesn't look promising
for them to be able to do that by July. Even before I could move in I need
an assessment done by their nurse  and the people who would be doing my
care needs to observe my care in my home and they agree. But everything is
at a standstill.

Talk about living in fear! I'm not  worried about the virus right now...
I'm worried about what is to happen to me. I have only one member of my
family who is coming out to learn my care in July but she has a job that
she has to get back to even though she is working at home right now. I have
no other family other than much older sisters and they are the ones who
wanted me to move on when THEY KNEW I had absolutely nowhere to go back in
2015. I tried to stay in their area but there was not even one remotely
wheelchair accessible apartment or house to move into and they were going
to throw me in their local nursing home when the nursing home had been
cited twice and when you contact nursing homes that tell you have to be
coming from a hospital or something like that and I would die if I had to
go to a nursing home because they have absolutely no idea how to take care
of a quadriplegic let alone taking care of my equipment and all the
supplies I need and a nice wheelchair conversion van I have along with my
support dog.

I was planning on sending my Support Dog to boot camp at a very well
established company and the owner/trainer was supposed to pick her up a
little over a week ago on a Friday but he e-mailed me on Thursday the day
before saying that he woke up with a very high fever and was not feeling
well at all so he was going to have to cancel for the next day. I haven't
heard from him since despite me e-mailing him hoping he was feeling better.

I agree with  Patrick Henry who said "Give me Liberty or give me Death."

On Mon, Apr 27, 2020 at 9:24 AM Jim Lubin  wrote:

> I'm doing good. Hope you are doing well
>
> On Mon, Apr 27, 2020 at 7:13 AM Nancy  wrote:
>
>> Just want to know how you all are doing. Thinking of you all!
>>
>> Nan
>>
>

-- 
“Petting, scratching, and cuddling a dog could be as soothing to the mind
and heart as deep meditation and almost as good for the soul as prayer.” ― Dean
Koontz

Re: [QUAD-L] Re: Just checking in.

[Eric Olson]

Not yet, but I fear the worst of it will come in the fall.  It's probably
just my own paranoia, but I worry more about a "second wave"  It might not
happen but I worry about sending my daughter back to school in September.
All my caregivers have school aged children too.  I hope they move
cautiously.  It would be much easier for upper grades to do then grade
school kids.   9th and 10th grade has in person school on Monday and
Tuesday and online school Wednesday - Friday.  Some kind of staggering as
opposed to all kids all together all week long.  I realize this is probably
not realistic for poorer school districts.  What about fall sports for the
kids?  I hope a "second wave" never comes, but I have to have something to
worry about lol.

On Mon, Apr 27, 2020 at 12:01 PM Shirley Bell  wrote:

> I am good in RI. are any of you having trouble getting aids to come?? be
> well
>
> *From:* Jim Lubin
> *Sent:* Monday, April 27, 2020 12:24 PM
> *To:* Nancy
> *Cc:* Quad-list
> *Subject:* [QUAD-L] Re: Just checking in.
>
> I'm doing good. Hope you are doing well
>
> On Mon, Apr 27, 2020 at 7:13 AM Nancy  wrote:
>
>> Just want to know how you all are doing. Thinking of you all!
>>
>> Nan
>>
>

Re: [QUAD-L] Re: Just checking in.

[Shirley Bell]

I am good in RI. are any of you having trouble getting aids to come?? be well

From: Jim Lubin 
Sent: Monday, April 27, 2020 12:24 PM
To: Nancy 
Cc: Quad-list 
Subject: [QUAD-L] Re: Just checking in.

I'm doing good. Hope you are doing well

On Mon, Apr 27, 2020 at 7:13 AM Nancy  wrote:

  Just want to know how you all are doing. Thinking of you all!

  Nan

[QUAD-L] Re: Just checking in.

[Jim Lubin]

I'm doing good. Hope you are doing well

On Mon, Apr 27, 2020 at 7:13 AM Nancy  wrote:

> Just want to know how you all are doing. Thinking of you all!
>
> Nan
>

Re: [QUAD-L] Re: HELP Spasms will not stop

[Aaron Mann]

Livin it up in Northwest Arkansas.

Aaron Mann


On Thu, Jan 23, 2020 at 4:07 PM Eric Olson  wrote:

> Nice!  Where do you live?
>
> On Thu, Jan 23, 2020 at 2:48 PM Aaron Mann  wrote:
>
>> I'm currently on 30mg Baclofen, 600mg Gapepentin 3x/day for spasm/pain
>> management. 5mg Diazepam as needed when spasms little worse.
>>
>> I also just got my medical marijuana card. Being advised by pharmacist to
>> start with CBD/THC combination. This is primarily for pain, but seeing huge
>> improvement in spasms.
>>
>> Aaron Mann
>>
>>
>> On Fri, Nov 29, 2019 at 12:47 PM Eric Olson  wrote:
>>
>>> I too take 20mg four times a
>>>
>>> On Fri, Nov 29, 2019 at 11:45 AM Jim Lubin  wrote:
>>>
 I take baclofen 20mg x 4 and dantrolene 25mg x 3. both are used to
 treat muscle spasticity

 On Fri, Nov 29, 2019 at 9:11 AM DAVID LEWIS 
 wrote:

> How  much baclofen mg can u up a day.?
>
> I already take 20 mg 3 times a day
> thanks
>

Re: [QUAD-L] Re: HELP Spasms will not stop

[Eric Olson]

Nice!  Where do you live?

On Thu, Jan 23, 2020 at 2:48 PM Aaron Mann  wrote:

> I'm currently on 30mg Baclofen, 600mg Gapepentin 3x/day for spasm/pain
> management. 5mg Diazepam as needed when spasms little worse.
>
> I also just got my medical marijuana card. Being advised by pharmacist to
> start with CBD/THC combination. This is primarily for pain, but seeing huge
> improvement in spasms.
>
> Aaron Mann
>
>
> On Fri, Nov 29, 2019 at 12:47 PM Eric Olson  wrote:
>
>> I too take 20mg four times a
>>
>> On Fri, Nov 29, 2019 at 11:45 AM Jim Lubin  wrote:
>>
>>> I take baclofen 20mg x 4 and dantrolene 25mg x 3. both are used to treat
>>> muscle spasticity
>>>
>>> On Fri, Nov 29, 2019 at 9:11 AM DAVID LEWIS 
>>> wrote:
>>>
 How  much baclofen mg can u up a day.?

 I already take 20 mg 3 times a day
 thanks

>>>

Re: [QUAD-L] Re: HELP Spasms will not stop

[Aaron Mann]

I'm currently on 30mg Baclofen, 600mg Gapepentin 3x/day for spasm/pain
management. 5mg Diazepam as needed when spasms little worse.

I also just got my medical marijuana card. Being advised by pharmacist to
start with CBD/THC combination. This is primarily for pain, but seeing huge
improvement in spasms.

Aaron Mann


On Fri, Nov 29, 2019 at 12:47 PM Eric Olson  wrote:

> I too take 20mg four times a
>
> On Fri, Nov 29, 2019 at 11:45 AM Jim Lubin  wrote:
>
>> I take baclofen 20mg x 4 and dantrolene 25mg x 3. both are used to treat
>> muscle spasticity
>>
>> On Fri, Nov 29, 2019 at 9:11 AM DAVID LEWIS 
>> wrote:
>>
>>> How  much baclofen mg can u up a day.?
>>>
>>> I already take 20 mg 3 times a day
>>> thanks
>>>
>>

Re: [QUAD-L] Re: HELP Spasms will not stop

[Eric Olson]

I too take 20mg four times a

On Fri, Nov 29, 2019 at 11:45 AM Jim Lubin  wrote:

> I take baclofen 20mg x 4 and dantrolene 25mg x 3. both are used to treat
> muscle spasticity
>
> On Fri, Nov 29, 2019 at 9:11 AM DAVID LEWIS 
> wrote:
>
>> How  much baclofen mg can u up a day.?
>>
>> I already take 20 mg 3 times a day
>> thanks
>>
>

[QUAD-L] Re: HELP Spasms will not stop

[Jim Lubin]

I take baclofen 20mg x 4 and dantrolene 25mg x 3. both are used to treat
muscle spasticity

On Fri, Nov 29, 2019 at 9:11 AM DAVID LEWIS  wrote:

> How  much baclofen mg can u up a day.?
>
> I already take 20 mg 3 times a day
> thanks
>

[QUAD-L] Re: [QUAD-L] Need instructions to Adapt man’s suit coat jacket

[Eric Olson]

Whenever I need to put on a suit, I have my caregivers put my arms above my
head like I'm signaling a touchdown.  Then just slide the coat straight
down on my arms and behind my back.  Ever since I got out of rehab, I cut
all my winter and fall jackets in half straight up the back.  Then I just
slide them on like a smock and have my caregivers tuck them behind my
back.  I tell them they don't have to tuck the ends so far behind me that
the ends touch - just enough to keep air out.  I also have the alteration
shop put a velcro strap at the back of the collar so it can be pulled
tight.  Hope that helps.


Virus-free.
www.avast.com

<#DAB4FAD8-2DD7-40BB-A1B8-4E2AA1F9FDF2>

On Thu, Aug 1, 2019 at 2:18 PM Gail Holmes 
wrote:

> Several years ago I found a site online w instructions on cutting out a
> horseshoe shape of the back lower 2/3 of a sport coat or suit coat.
>
> The top of the cut was below the top of backrest so no modification was
> obvious when in the chair.
>
> I have spent hours looking for the instructions and now can’t find them. I
> was only able to find an image of a man sitting with part of the back out
> which is similar to what  I need.
>
> I’m nervous about cutting a new suit coat without those instructions and
> the coat is needed for Saturday morning.
>
> Glenn Gaudet by the way will be wearing this suit coat ( if I don’t mangle
> it  ) to his
> father’s funeral.
>
> For the record he is almost 58 and 43 years post injury C4/5 and doing
> relatively well.
>
> I regularly tell him and forward to him all the things I learn from all of
> you on the List which he told me about years ago because he chooses not to
> participate on the forum.
>
> Thanks for any help w sewing instructions.
>
>
>
>

[QUAD-L] Re: [QUAD-L] Watch This—You Can Control Xfinity X1 with Just Your Eyes

[Jim Lubin]

it's a web-based remote. if you Xfinity X1 you can use it here
https://accrem.apps.cloud.comcast.net/


On Mon, Jun 17, 2019 at 11:52 AM Lori Michaelson 
wrote:

> If I enjoyed watching TV then I might be interested into getting it
> (however you get it and the process at  of getting it) but I don't care for
> TV.
>
> On Mon, Jun 17, 2019 at 10:43 AM Jim Lubin  wrote:
>
>>
>> https://www.tomsguide.com/us/comcast-xfinity-x1-eye-control,news-30371.html
>>
>
>
> --
> "Petting, scratching and cuddling a dog could be soothing to the mind and
> heart and deep meditation and almost as good for the soul as prayer." ~Dean
> Koontz
>

[QUAD-L] Re: [QUAD-L] Watch This—You Can Control Xfinity X1 with Just Your Eyes

[Lori Michaelson]

If I enjoyed watching TV then I might be interested into getting it
(however you get it and the process at  of getting it) but I don't care for
TV.

On Mon, Jun 17, 2019 at 10:43 AM Jim Lubin  wrote:

> https://www.tomsguide.com/us/comcast-xfinity-x1-eye-control,news-30371.html
>


-- 
"Petting, scratching and cuddling a dog could be soothing to the mind and
heart and deep meditation and almost as good for the soul as prayer." ~Dean
Koontz

[QUAD-L] Re: [QUAD-L] protection for toes – it's

[Aaron Mann]

Here you go:  https://www.safetygirl.com/womens-steel-toe-shoes.html

Scroll down, I don't expect you to wear big-ol-boots (unless you're into
that)

Aaron Mann


On Fri, Mar 15, 2019 at 3:11 AM DEBRA DEW  wrote:

>
> is there some kind of a shoe which I could purchase which would protect my
> toes from injury? When I am lifted in and out of the front seat of a car,
> my toes are bruised and injured.
>
>
>
>
>
> *Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot Currently: tetrapeligic due
> to advanced MS and living in a nursing home hell 18 years Phone: 561-58
> 6-9399 SC student 20yrs  … can not brag about my love for YHVH God because
> I fail Him daily, but I can brag about His love for me because He never
> fails me. ROMANS 8:28… Kindness is the language the deaf can hear and the
> blind can see – Mark Twain*
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
> THE FACT THAT THERE IS A HIGHWAY TO HELL AND ONLY A STAIRWAY TO HEAVEN
> SAYS A LOT ABOUT ANTICIPATED TRAFFIC NUMBERS
> *Jesus is the living word*
>

[QUAD-L] Re: NCIL Advocacy re EVV.doc

[Jim Lubin]

National Council on Independent Living

Electronic Visit Verification (EVV) Task Force Statement of Principles and
Goals

Electronic Visit Verification (EVV) requirements were passed into federal
law as part of the 21st Century Cures Act (‘Cures Act’) of 2016. The Cures
Act requires the implementation of EVV to monitor all personal care
services (PCS) and home health care services (HHCS) funded by Medicaid.

States were initially tasked to ensure that all state Medicaid and waiver
PCS provided in the home comply with EVV guidelines by January 2019. Recent
federal legislation extended this deadline to January 2020. Because many
people with disabilities rely on these services to live independently in
our homes and communities, the disability community is negatively impacted
in a variety of ways by EVV policies and mandates.

The National Council on Independent Living (NCIL) believes that people with
disabilities have the right to be integrated in society and control our own
lives. EVV systems undermine the intent and integrity of the Independent
Living Model and personal care services, including Consumer-Directed
Services (CDS). EVV systems threaten the privacy of countless Americans
with disabilities who would otherwise be free of intrusive governmental
monitoring.

NCIL advocates for the leadership of people with disabilities in all policy
discussions and decisions that impact our lives. The expertise and active
engagement of people with disabilities is critical in all EVV development,
implementation, and evaluation.

download more information here
https://drive.google.com/file/d/0Bzc-_TWzrhSadVFGXzJrV3BjTGYzSFdUMk9wNk5aTlNmUlNz/view?usp=sharing

On Fri, Apr 12, 2019 at 10:50 PM Dana Wray  wrote:

>
>
>
>
> Sent from my iPad

[QUAD-L] Re: [QUAD-L] the Pro bed – does anybody have one? – Voice-activated self turning bed

[Greg]

I've used this mattress for years with no probs.
Its circulates the air, every other tube deflates then inflates.


https://www.amazon.com/Drive-Medical-Mattress-Replacement-Alternating/dp/B002VWKO9W/ref=sr_1_fkmr0_1_a_it?ie=UTF8=1549811935=8-1-fkmr0=Drive+Medical+Med-Aire+8%22+Alternating+Pressure+and+Low+Air+Loss+Mattress+System+Pump+ONLY%2C+14027P



On 2/10/2019 2:40 AM, DEBRA DEW wrote:
– hospital bed to turn me while I'm sleeping so I could sleep through 
the night and bye-bye. Sleep deprivation –.


https://www.pro-bed.com/models-and-accessories


*Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
Formerly: Homeschooling mom of 9 and pvt. pilot
Currently: tetrapeligic due to advanced MS and living in a nursing 
home hell 18 years

Phone: 561-58 6-9399
SC student 20yrs  … can not brag about my love for YHVH God because I 
fail Him daily, but I can brag about His love for me because He never 
fails me.
ROMANS 8:28… Kindness is the language the deaf can hear and the blind 
can see – Mark Twain*

B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
THE FACT THAT THERE IS A HIGHWAY TO HELL AND ONLY A STAIRWAY TO HEAVEN 
SAYS A LOT ABOUT ANTICIPATED TRAFFIC NUMBERS

*Jesus is the living word*

[QUAD-L] Re: [QUAD-L] Passover convention – is $10 per hour enough to offer to pay someone as a companion?

[Eric Olson]

Good luck.

On Thu, Jan 17, 2019 at 4:46 PM DEBRA DEW  wrote:

> Below is the message I am sending out my 9 children helping someone will
> be my companion for 4 days on a trip.I am sharing this with you because I
> am trying to figure out if $1000 is fair or if I should offer more money
> for 96 hours of having someone with me as a companion.that would equal
> about $10 an hour… Your opinion would be greatly appreciated.
>
>
>
> I will be paying for airfare and the hotel room and I am trying to beg,
> borrow or bribe one of my children to go with me.Adrianna was scheduled to
> be my companion, but the little booger bear went and got a job.
>
> I will pay anyone $1000 to go with me please; this will be the first
> vacation I have had an over 15 years and by dammit, if it kills me, I will
> get there one way or the other.
>
> I will be in a room by myself, so I need to take someone with me to push
> my knees over once every 2 hours during the night.
>
> My girlfriends going with me, need to have an uninterrupted sleep to be
> able to look after being in the daytime.
>
> The hotel provides breakfast custom-made & hors d'oeuvres during the free
> booze happy hour, so the only meal you will have to pay for is lunch, and
> if that is a dealbreaker, I will happily buy your lunch every day.
>
>
> The Embassy Suites Northwest Arkansas Hotel will provide a free cooked to
> order breakfast every morning and a free managers reception each evening
> (cocktails and hors d'oeuvres) happy hour.
>
> There is an indoor pool with whirlpool and sauna, and fitness center with
> spa services available if wanted, and our room will have a refrigerator,
> cable TV, coffee maker, and a microwave. & You are welcome to bring your
> pet because they cater to personal pets.
>
> My suite will have a bedroom and a living room with a sofa bed.
>
> They offer free shuttle rides to any location within 5 miles of the hotel.
>
> . The Embassy Suites Properties are a subsidiary of the Hilton Hotel
> chain, the best in my opinion for quality and comfort, and is connected to
> the John Q. Hammons Center with 80,000 sq. ft. of event space, so
> everything is within walking distance without needing to go through the
> hassle of finding taxicabs.
>
> .
>
>
> https://www.booking.com/hotel/us/embassy-suites-northwest-arkansas-spa-convention.html
>
>
>
>
>
>
>
> Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot
> Currently: tetrapeligic due to advanced MS and living in a nursing home
> hell 18 years
> Phone: 561-58 6-9399
> SC student 20yrs  … can not brag about my love for YHVH God because I fail
> Him daily, but I can brag about His love for me because He never fails me.
> ROMANS 8:28… Kindness is the language the deaf can hear and the blind can
> see – Mark Twain
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
> THE FACT THAT THERE IS A HIGHWAY TO HELL AND ONLY A STAIRWAY TO HEAVEN
> SAYS A LOT ABOUT ANTICIPATED TRAFFIC NUMBERS
> Jesus is the living word
>

[QUAD-L] Re: [QUAD-L] How can I find info about perverts sexually molesting immobilized paralyzed females… Cannot find anything on the Internet specifically addressing this issue.

[Eric Olson]

I don't think you can search for anything as specific as you're looking for
but you can find out if they're registered
https://www.familywatchdog.us/Default.asp


Virus-free.
www.avast.com

<#DAB4FAD8-2DD7-40BB-A1B8-4E2AA1F9FDF2>

On Mon, Dec 3, 2018 at 2:34 PM DEBRA DEW  wrote:

>
> How can I find info about perverts sexually molesting immobilized
> paralyzed females… Cannot find anything on the Internet specifically
> addressing this issue.
>
>
>
>
>
> *Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot Currently: tetrapeligic due
> to advanced MS and living in a nursing home hell 18 years Phone: 561-58
> 6-9399 SC student 20yrs  … can not brag about my love for YHVH God because
> I fail Him daily, but I can brag about His love for me because He never
> fails me. ROMANS 8:28… Kindness is the language the deaf can hear and the
> blind can see – Mark Twain*
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
> THE FACT THAT THERE IS A HIGHWAY TO HELL AND ONLY A STAIRWAY TO HEAVEN
> SAYS A LOT ABOUT ANTICIPATED TRAFFIC NUMBERS
> *Jesus is the living word*
>

[QUAD-L] Re: [QUAD-L] Electronic Visit Verification (EVV) – Protect Our Medicaid

[Noel]

My home health company started using it a couple months ago. It can be
an annoyance, but it's nice to have people show up on time.

On Mon, Jun 4, 2018 at 8:13 PM, Jim Lubin  wrote:
> "EVV is a tracking system that requires electronic verification of when a
> person receives Medicaid-funded personal care services. States are required
> to put EVV systems in place by January 1, 2019. As states are beginning to
> put in place EVV systems, people with disabilities are very concerned that
> EVV systems will violate their privacy and limit their independence.
>
> On May 16, 2018, the Centers for Medicaid & Medicare Services (CMS) issued
> guidance about EVV.  Many questions and concerns remain. On May 22, 2018, a
> bipartisan bill on EVV were introduced in Congress – H.R. 5912 in the House,
> S. 2897 in the Senate. These bills would extend the deadline for
> implementing EVV for personal care services for a year, and require EVV
> regulations to be published.  The proposed delay is an important step and
> will give advocates more time to work with Congress, CMS and states to
> address the significant concerns with EVV and its potential impact on people
> with disabilities.  Learn more about the bill and what you can do."
>
> https://medicaid.publicrep.org/feature/electronic-visit-verification-evv/

Re: [QUAD-L] Re: [QUAD-L] Re: [QUAD-L] RE: [QUAD-L] Food 菱 prepared

[Amy Elizabeth Baldwin]

That is what I do also.We go out to eat every day for dinner, but my m mom and 
I usually go out to eat lunch. 

Sent from Yahoo Mail on Android 
 
  On Mon, Jun 4, 2018 at 5:32 PM, Don Smith wrote:   ​My 
caregivers fix all my meals, but I always let them know what I want and go 
shopping with them.

On Mon, Jun 4, 2018 at 2:03 PM, Amy Elizabeth Baldwin 
 wrote:

All of my food and meals are fixed for me. At home and when I go out to eat. 
I couldn't resist making a comment on it!
•~ LittleQuad ~•  

Sent from Yahoo Mail on Android 
 
  On Tue, May 29, 2018 at 5:31 PM, Eric Olson wrote:   When 
I was first injured I thought having to be fed was the most degrading thing 
ever.  

On Tue, May 29, 2018 at 4:49 PM,  wrote:

No, I miss cooking and tasting, and I hate being fed even after all these years!
"Nothing is impossible, the word itself says I'm possible" Audrey Hepburn




-Original Message-
From: Bobbie Humphreys  
Sent: Tuesday, May 29, 2018 2:47 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] Food 菱 prepared 

Does anybody else just like having someone else prepare the food ALL the time?
Bobbie 

"Be the change you want to see in the world". Gandhi



  


  

[QUAD-L] Re: [QUAD-L] Re: [QUAD-L] RE: [QUAD-L] Food 菱 prepared

[Don Smith]

​My caregivers fix all my meals, but I always let them know what I want and
go shopping with them.


On Mon, Jun 4, 2018 at 2:03 PM, Amy Elizabeth Baldwin <
the.littleq...@yahoo.com> wrote:

> All of my food and meals are fixed for me.
> At home and when I go out to eat.
>
> I couldn't resist making a comment on it!
>
> •~ LittleQuad ~•
>
> Sent from Yahoo Mail on Android
> 
>
> On Tue, May 29, 2018 at 5:31 PM, Eric Olson
>  wrote:
> When I was first injured I thought having to be fed was the most degrading
> thing ever.
>
> On Tue, May 29, 2018 at 4:49 PM,  wrote:
>
> No, I miss cooking and tasting, and I hate being fed even after all these
> years!
> "Nothing is impossible, the word itself says I'm possible" Audrey Hepburn
>
>
>
>
> -Original Message-
> From: Bobbie Humphreys 
> Sent: Tuesday, May 29, 2018 2:47 PM
> To: quad-list@eskimo.com
> Subject: [QUAD-L] Food 菱 prepared
>
> Does anybody else just like having someone else prepare the food ALL the
> time?
> Bobbie
>
> "Be the change you want to see in the world". Gandhi
>
>
>

Re: [QUAD-L] Re: [QUAD-L] RE: [QUAD-L] Food 菱 prepared

[Amy Elizabeth Baldwin]

All of my food and meals are fixed for me. At home and when I go out to eat. 
I couldn't resist making a comment on it!
•~ LittleQuad ~•  

Sent from Yahoo Mail on Android 
 
  On Tue, May 29, 2018 at 5:31 PM, Eric Olson wrote:   When 
I was first injured I thought having to be fed was the most degrading thing 
ever.  

On Tue, May 29, 2018 at 4:49 PM,  wrote:

No, I miss cooking and tasting, and I hate being fed even after all these years!
"Nothing is impossible, the word itself says I'm possible" Audrey Hepburn




-Original Message-
From: Bobbie Humphreys  
Sent: Tuesday, May 29, 2018 2:47 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] Food 菱 prepared 

Does anybody else just like having someone else prepare the food ALL the time?
Bobbie 

"Be the change you want to see in the world". Gandhi



  

[QUAD-L] Re: [QUAD-L] RE: [QUAD-L] Food 菱 prepared

[Eric Olson]

When I was first injured I thought having to be fed was the most degrading
thing ever.

On Tue, May 29, 2018 at 4:49 PM,  wrote:

> No, I miss cooking and tasting, and I hate being fed even after all these
> years!
> "Nothing is impossible, the word itself says I'm possible" Audrey Hepburn
>
>
>
>
> -Original Message-
> From: Bobbie Humphreys 
> Sent: Tuesday, May 29, 2018 2:47 PM
> To: quad-list@eskimo.com
> Subject: [QUAD-L] Food 菱 prepared
>
> Does anybody else just like having someone else prepare the food ALL the
> time?
> Bobbie
>
> "Be the change you want to see in the world". Gandhi
>
>

[QUAD-L] RE: [QUAD-L] Food 菱 prepared

[poajoan]

No, I miss cooking and tasting, and I hate being fed even after all these years!
"Nothing is impossible, the word itself says I'm possible" Audrey Hepburn




-Original Message-
From: Bobbie Humphreys  
Sent: Tuesday, May 29, 2018 2:47 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] Food 菱 prepared 

Does anybody else just like having someone else prepare the food ALL the time?
Bobbie 

"Be the change you want to see in the world". Gandhi

Re: [QUAD-L] Re: Mouthpiece Search

[Jeffrey Gaede]

I'll have to try the dropbox thing when I'm not so tired. Thank you for the 
ideas, Everyone.Jeff

  From: Jim Lubin <jlu...@eskimo.com>
 To: Jim Lubin <jlu...@eskimo.com> 
Cc: Jeffrey Gaede <jsga...@yahoo.com>; Greg <g...@eskimo.com>; 
"quad-list@eskimo.com" <quad-list@eskimo.com>
 Sent: Saturday, February 24, 2018 5:09 PM
 Subject: Re: [QUAD-L] Re: Mouthpiece Search
   
How about this modable thermoplastic? http://www.instamorph.com/
you drop it in warm water, mold it to the shape then put it in cold water and 
it holds the shape.
On Sat, Feb 24, 2018 at 11:23 AM, Jim Lubin <jlu...@eskimo.com> wrote:

You could put the picture in a cloud drive (dropbox, onedrive, google drive), 
copy the share link to your message.

On Sat, Feb 24, 2018 at 9:36 AM, Jeffrey Gaede <jsga...@yahoo.com> wrote:

Those are some interesting ideas. The mouthpiece isn't something specifically 
designed for an individual, but interesting ideas. I tried attaching a picture 
but it didn't allow me. Not sure how that works. Jim? Would I have to send it 
directly to individuals?

  From: Greg <g...@eskimo.com>
 To: quad-list@eskimo.com 
 Sent: Saturday, February 24, 2018 7:14 AM
 Subject: Re: [QUAD-L] Re: Mouthpiece Search
  
 I don't use sip-and-puff, but can the mouth piece be 3D printed?
 I don't know what its made out of, or if its like a straw or a mouth piece.
 Is there a photo to see what they look like? Could a dentist mold your mouth, 
etc.
 Greg
 
 On 2/23/2018 12:43 AM, Jim Lubin wrote:
  
 
 Bummer. It sucks when something works and you can't find a replacement. I am 
having the same problem with some of my vent circuit parts. Some of the old 
parts work better for me but I can't find replacements.  
 On Thu, Feb 22, 2018 at 7:15 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:
 
   Yeah, those don't work for me, Jim. Every time I've searched for sip and 
puff mouthpieces, that's what I find and usually that's  all I find. I'm sure 
they are out there somewhere but who knows what they were originally used for. 
 
 From: Jim Lubin <jlu...@eskimo.com>
 To: Jeffrey Gaede <jsga...@yahoo.com> 
 Cc: Quad-list Post <quad-list@eskimo.com>
 Sent: Thursday, February 22, 2018 7:03 PM
 Subject: [QUAD-L] Re: Mouthpiece Search
 
I think it got rejected by the list with the photo attached. 
  I've been using these dental "saliva ejectors" with my sip and puff. They  
are a flexible tube about 5" long with wire embedded so it keeps the shape when 
you bend it.  
  http://www.idsdental.com/ salivaejectors.html     
 On Thu, Feb 22, 2018 at 6:32 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:
 
   Hello, Folks. I was wondering if you might help  searched for something. I 
have a sip and puff controlled wheelchair  and back around 2005 I had the 
perfect mouthpieces for this chair. A few years ago I got down to the last  
mouthpiece and went online to order more, only I couldn't find the same thing. 
I've searched a number of  times the past couple years and can't come up with 
anything close.  It's possible that these were never designed to  be sip and 
puff wheelchair mouthpieces, but I'd be more than  grateful if someone could 
locate them for me. They are "L-shaped", made of a very sturdy plastic 
composite,  giving them a little flex but you couldn't clamp it closed with the 
tightest bite, and there is a "doughnut" molded  into one end. The attached 
picture is of the last one I had. It's a little warped because someone tried to 
wash it  in a dishwasher, but it would normally be about 5" long, again,  
L-shaped, and has a doughnut molded onto one  end. Thanks for any help… Jeff
  

  
  
 
 
  
  
 

   





   

Re: [QUAD-L] Re: Mouthpiece Search

[Jim Lubin]

How about this modable thermoplastic? http://www.instamorph.com/

you drop it in warm water, mold it to the shape then put it in cold water
and it holds the shape.

On Sat, Feb 24, 2018 at 11:23 AM, Jim Lubin <jlu...@eskimo.com> wrote:

> You could put the picture in a cloud drive (dropbox, onedrive, google
> drive), copy the share link to your message.
>
>
> On Sat, Feb 24, 2018 at 9:36 AM, Jeffrey Gaede <jsga...@yahoo.com> wrote:
>
>> Those are some interesting ideas. The mouthpiece isn't something
>> specifically designed for an individual, but interesting ideas. I tried
>> attaching a picture but it didn't allow me. Not sure how that works. Jim?
>> Would I have to send it directly to individuals?
>>
>>
>> --
>> *From:* Greg <g...@eskimo.com>
>> *To:* quad-list@eskimo.com
>> *Sent:* Saturday, February 24, 2018 7:14 AM
>> *Subject:* Re: [QUAD-L] Re: Mouthpiece Search
>>
>> I don't use sip-and-puff, but can the mouth piece be 3D printed?
>> I don't know what its made out of, or if its like a straw or a mouth
>> piece.
>> Is there a photo to see what they look like? Could a dentist mold your
>> mouth, etc.
>> Greg
>>
>> On 2/23/2018 12:43 AM, Jim Lubin wrote:
>>
>> Bummer. It sucks when something works and you can't find a replacement. I
>> am having the same problem with some of my vent circuit parts. Some of the
>> old parts work better for me but I can't find replacements.
>>
>> On Thu, Feb 22, 2018 at 7:15 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:
>>
>> Yeah, those don't work for me, Jim. Every time I've searched for sip and
>> puff mouthpieces, that's what I find and usually that's all I find. I'm
>> sure they are out there somewhere but who knows what they were originally
>> used for.
>>
>>
>> --
>> *From:* Jim Lubin <jlu...@eskimo.com>
>> *To:* Jeffrey Gaede <jsga...@yahoo.com>
>> *Cc:* Quad-list Post <quad-list@eskimo.com>
>> *Sent:* Thursday, February 22, 2018 7:03 PM
>> *Subject:* [QUAD-L] Re: Mouthpiece Search
>>
>> I think it got rejected by the list with the photo attached.
>>
>> I've been using these dental "saliva ejectors" with my sip and puff. They
>> are a flexible tube about 5" long with wire embedded so it keeps the shape
>> when you bend it.
>>
>> http://www.idsdental.com/ salivaejectors.html
>> <http://www.idsdental.com/salivaejectors.html>
>>
>>
>> On Thu, Feb 22, 2018 at 6:32 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:
>>
>> Hello, Folks. I was wondering if you might help searched for something. I
>> have a sip and puff controlled wheelchair and back around 2005 I had the
>> perfect mouthpieces for this chair. A few years ago I got down to the last
>> mouthpiece and went online to order more, only I couldn't find the same
>> thing. I've searched a number of times the past couple years and can't come
>> up with anything close. It's possible that these were never designed to be
>> sip and puff wheelchair mouthpieces, but I'd be more than grateful if
>> someone could locate them for me. They are "L-shaped", made of a very
>> sturdy plastic composite, giving them a little flex but you couldn't clamp
>> it closed with the tightest bite, and there is a "doughnut" molded into one
>> end. The attached picture is of the last one I had. It's a little warped
>> because someone tried to wash it in a dishwasher, but it would normally be
>> about 5" long, again, L-shaped, and has a doughnut molded onto one end.
>> Thanks for any help… Jeff
>>
>>
>>
>>
>>
>>
>>
>>
>>
>

Re: [QUAD-L] Re: Mouthpiece Search

[Jim Lubin]

You could put the picture in a cloud drive (dropbox, onedrive, google
drive), copy the share link to your message.


On Sat, Feb 24, 2018 at 9:36 AM, Jeffrey Gaede <jsga...@yahoo.com> wrote:

> Those are some interesting ideas. The mouthpiece isn't something
> specifically designed for an individual, but interesting ideas. I tried
> attaching a picture but it didn't allow me. Not sure how that works. Jim?
> Would I have to send it directly to individuals?
>
>
> --
> *From:* Greg <g...@eskimo.com>
> *To:* quad-list@eskimo.com
> *Sent:* Saturday, February 24, 2018 7:14 AM
> *Subject:* Re: [QUAD-L] Re: Mouthpiece Search
>
> I don't use sip-and-puff, but can the mouth piece be 3D printed?
> I don't know what its made out of, or if its like a straw or a mouth piece.
> Is there a photo to see what they look like? Could a dentist mold your
> mouth, etc.
> Greg
>
> On 2/23/2018 12:43 AM, Jim Lubin wrote:
>
> Bummer. It sucks when something works and you can't find a replacement. I
> am having the same problem with some of my vent circuit parts. Some of the
> old parts work better for me but I can't find replacements.
>
> On Thu, Feb 22, 2018 at 7:15 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:
>
> Yeah, those don't work for me, Jim. Every time I've searched for sip and
> puff mouthpieces, that's what I find and usually that's all I find. I'm
> sure they are out there somewhere but who knows what they were originally
> used for.
>
>
> --
> *From:* Jim Lubin <jlu...@eskimo.com>
> *To:* Jeffrey Gaede <jsga...@yahoo.com>
> *Cc:* Quad-list Post <quad-list@eskimo.com>
> *Sent:* Thursday, February 22, 2018 7:03 PM
> *Subject:* [QUAD-L] Re: Mouthpiece Search
>
> I think it got rejected by the list with the photo attached.
>
> I've been using these dental "saliva ejectors" with my sip and puff. They
> are a flexible tube about 5" long with wire embedded so it keeps the shape
> when you bend it.
>
> http://www.idsdental.com/ salivaejectors.html
> <http://www.idsdental.com/salivaejectors.html>
>
>
> On Thu, Feb 22, 2018 at 6:32 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:
>
> Hello, Folks. I was wondering if you might help searched for something. I
> have a sip and puff controlled wheelchair and back around 2005 I had the
> perfect mouthpieces for this chair. A few years ago I got down to the last
> mouthpiece and went online to order more, only I couldn't find the same
> thing. I've searched a number of times the past couple years and can't come
> up with anything close. It's possible that these were never designed to be
> sip and puff wheelchair mouthpieces, but I'd be more than grateful if
> someone could locate them for me. They are "L-shaped", made of a very
> sturdy plastic composite, giving them a little flex but you couldn't clamp
> it closed with the tightest bite, and there is a "doughnut" molded into one
> end. The attached picture is of the last one I had. It's a little warped
> because someone tried to wash it in a dishwasher, but it would normally be
> about 5" long, again, L-shaped, and has a doughnut molded onto one end.
> Thanks for any help… Jeff
>
>
>
>
>
>
>
>
>

Re: [QUAD-L] Re: Mouthpiece Search

[Jeffrey Gaede]

Those are some interesting ideas. The mouthpiece isn't something specifically 
designed for an individual, but interesting ideas. I tried attaching a picture 
but it didn't allow me. Not sure how that works. Jim? Would I have to send it 
directly to individuals?

  From: Greg <g...@eskimo.com>
 To: quad-list@eskimo.com 
 Sent: Saturday, February 24, 2018 7:14 AM
 Subject: Re: [QUAD-L] Re: Mouthpiece Search
   
 I don't use sip-and-puff, but can the mouth piece be 3D printed?
 I don't know what its made out of, or if its like a straw or a mouth piece.
 Is there a photo to see what they look like? Could a dentist mold your mouth, 
etc.
 Greg
 
 On 2/23/2018 12:43 AM, Jim Lubin wrote:
  
 
 Bummer. It sucks when something works and you can't find a replacement. I am 
having the same problem with some of my vent circuit parts. Some of the old 
parts work better for me but I can't find replacements.  
 On Thu, Feb 22, 2018 at 7:15 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:
 
   Yeah, those don't work for me, Jim. Every time I've searched for sip and 
puff mouthpieces, that's what I find and usually that's  all I find. I'm sure 
they are out there somewhere but who knows what they were originally used for. 
 
 From: Jim Lubin <jlu...@eskimo.com>
 To: Jeffrey Gaede <jsga...@yahoo.com> 
 Cc: Quad-list Post <quad-list@eskimo.com>
 Sent: Thursday, February 22, 2018 7:03 PM
 Subject: [QUAD-L] Re: Mouthpiece Search
 
I think it got rejected by the list with the photo attached. 
  I've been using these dental "saliva ejectors" with my sip and puff. They  
are a flexible tube about 5" long with wire embedded so it keeps the shape when 
you bend it.  
  http://www.idsdental.com/ salivaejectors.html     
 On Thu, Feb 22, 2018 at 6:32 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:
 
   Hello, Folks. I was wondering if you might help  searched for something. I 
have a sip and puff controlled wheelchair  and back around 2005 I had the 
perfect mouthpieces for this chair. A few years ago I got down to the last  
mouthpiece and went online to order more, only I couldn't find the same thing. 
I've searched a number of  times the past couple years and can't come up with 
anything close.  It's possible that these were never designed to  be sip and 
puff wheelchair mouthpieces, but I'd be more than  grateful if someone could 
locate them for me. They are "L-shaped", made of a very sturdy plastic 
composite,  giving them a little flex but you couldn't clamp it closed with the 
tightest bite, and there is a "doughnut" molded  into one end. The attached 
picture is of the last one I had. It's a little warped because someone tried to 
wash it  in a dishwasher, but it would normally be about 5" long, again,  
L-shaped, and has a doughnut molded onto one  end. Thanks for any help… Jeff
  

  
  
 
 
  
  
 

   

Re: [QUAD-L] Re: Mouthpiece Search

[Greg]

I don't use sip-and-puff, but can the mouth piece be 3D printed?
I don't know what its made out of, or if its like a straw or a mouth piece.
Is there a photo to see what they look like? Could a dentist mold your 
mouth, etc.

Greg

On 2/23/2018 12:43 AM, Jim Lubin wrote:
Bummer. It sucks when something works and you can't find a 
replacement. I am having the same problem with some of my vent 
circuit parts. Some of the old parts work better for me but I can't 
find replacements.


On Thu, Feb 22, 2018 at 7:15 PM, Jeffrey Gaede <jsga...@yahoo.com 
<mailto:jsga...@yahoo.com>> wrote:


Yeah, those don't work for me, Jim. Every time I've searched for
sip and puff mouthpieces, that's what I find and usually that's
all I find. I'm sure they are out there somewhere but who knows
what they were originally used for.



*From:* Jim Lubin <jlu...@eskimo.com <mailto:jlu...@eskimo.com>>
*To:* Jeffrey Gaede <jsga...@yahoo.com <mailto:jsga...@yahoo.com>>
*Cc:* Quad-list Post <quad-list@eskimo.com
<mailto:quad-list@eskimo.com>>
*Sent:* Thursday, February 22, 2018 7:03 PM
*Subject:* [QUAD-L] Re: Mouthpiece Search

I think it got rejected by the list with the photo attached.

I've been using these dental "saliva ejectors" with my sip and
puff. They are a flexible tube about 5" long with wire embedded so
it keeps the shape when you bend it.

http://www.idsdental.com/salivaejectors.html
<http://www.idsdental.com/salivaejectors.html>

On Thu, Feb 22, 2018 at 6:32 PM, Jeffrey Gaede <jsga...@yahoo.com
<mailto:jsga...@yahoo.com>> wrote:

Hello, Folks. I was wondering if you might help searched for
something. I have a sip and puff controlled wheelchair and
back around 2005 I had the perfect mouthpieces for this chair.
A few years ago I got down to the last mouthpiece and went
online to order more, only I couldn't find the same thing.
I've searched a number of times the past couple years and
can't come up with anything close. It's possible that these
were never designed to be sip and puff wheelchair mouthpieces,
but I'd be more than grateful if someone could locate them for
me. They are "L-shaped", made of a very sturdy plastic
composite, giving them a little flex but you couldn't clamp it
closed with the tightest bite, and there is a "doughnut"
molded into one end. The attached picture is of the last one I
had. It's a little warped because someone tried to wash it in
a dishwasher, but it would normally be about 5" long, again,
L-shaped, and has a doughnut molded onto one end. Thanks for
any help… Jeff

Re: [QUAD-L] Re: Mouthpiece Search

[Jeffrey Gaede]

I know, Jim.  And I have put in so many hours searching!  I've essentially 
given up looking for sip and puff parts and I'm looking at tubing from plumbing 
or wherever.  I even called back to New Mexico at one point to try and find the 
company that may have provided the part but that got me nowhere.  Not sure what 
to try next.

  From: Jim Lubin <jlu...@eskimo.com>
 To: Jeffrey Gaede <jsga...@yahoo.com> 
Cc: Quad-list Post <quad-list@eskimo.com>
 Sent: Thursday, February 22, 2018 11:44 PM
 Subject: Re: [QUAD-L] Re: Mouthpiece Search
   
Bummer. It sucks when something works and you can't find a replacement. I am 
having the same problem with some of my vent circuit parts. Some of the old 
parts work better for me but I can't find replacements.
On Thu, Feb 22, 2018 at 7:15 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:

Yeah, those don't work for me, Jim. Every time I've searched for sip and puff 
mouthpieces, that's what I find and usually that's all I find. I'm sure they 
are out there somewhere but who knows what they were originally used for.

  From: Jim Lubin <jlu...@eskimo.com>
 To: Jeffrey Gaede <jsga...@yahoo.com> 
Cc: Quad-list Post <quad-list@eskimo.com>
 Sent: Thursday, February 22, 2018 7:03 PM
 Subject: [QUAD-L] Re: Mouthpiece Search
  
I think it got rejected by the list with the photo attached.
I've been using these dental "saliva ejectors" with my sip and puff. They are a 
flexible tube about 5" long with wire embedded so it keeps the shape when you 
bend it. 
http://www.idsdental.com/ salivaejectors.html  
On Thu, Feb 22, 2018 at 6:32 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:

Hello, Folks. I was wondering if you might help searched for something. I have 
a sip and puff controlled wheelchair and back around 2005 I had the perfect 
mouthpieces for this chair. A few years ago I got down to the last mouthpiece 
and went online to order more, only I couldn't find the same thing. I've 
searched a number of times the past couple years and can't come up with 
anything close. It's possible that these were never designed to be sip and puff 
wheelchair mouthpieces, but I'd be more than grateful if someone could locate 
them for me. They are "L-shaped", made of a very sturdy plastic composite, 
giving them a little flex but you couldn't clamp it closed with the tightest 
bite, and there is a "doughnut" molded into one end. The attached picture is of 
the last one I had. It's a little warped because someone tried to wash it in a 
dishwasher, but it would normally be about 5" long, again, L-shaped, and has a 
doughnut molded onto one end. Thanks for any help… Jeff





   



   

Re: [QUAD-L] Re: Mouthpiece Search

[Jim Lubin]

Bummer. It sucks when something works and you can't find a replacement. I
am having the same problem with some of my vent circuit parts. Some of the
old parts work better for me but I can't find replacements.

On Thu, Feb 22, 2018 at 7:15 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:

> Yeah, those don't work for me, Jim. Every time I've searched for sip and
> puff mouthpieces, that's what I find and usually that's all I find. I'm
> sure they are out there somewhere but who knows what they were originally
> used for.
>
>
> --
> *From:* Jim Lubin <jlu...@eskimo.com>
> *To:* Jeffrey Gaede <jsga...@yahoo.com>
> *Cc:* Quad-list Post <quad-list@eskimo.com>
> *Sent:* Thursday, February 22, 2018 7:03 PM
> *Subject:* [QUAD-L] Re: Mouthpiece Search
>
> I think it got rejected by the list with the photo attached.
>
> I've been using these dental "saliva ejectors" with my sip and puff. They
> are a flexible tube about 5" long with wire embedded so it keeps the shape
> when you bend it.
>
> http://www.idsdental.com/salivaejectors.html
>
>
> On Thu, Feb 22, 2018 at 6:32 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:
>
> Hello, Folks. I was wondering if you might help searched for something. I
> have a sip and puff controlled wheelchair and back around 2005 I had the
> perfect mouthpieces for this chair. A few years ago I got down to the last
> mouthpiece and went online to order more, only I couldn't find the same
> thing. I've searched a number of times the past couple years and can't come
> up with anything close. It's possible that these were never designed to be
> sip and puff wheelchair mouthpieces, but I'd be more than grateful if
> someone could locate them for me. They are "L-shaped", made of a very
> sturdy plastic composite, giving them a little flex but you couldn't clamp
> it closed with the tightest bite, and there is a "doughnut" molded into one
> end. The attached picture is of the last one I had. It's a little warped
> because someone tried to wash it in a dishwasher, but it would normally be
> about 5" long, again, L-shaped, and has a doughnut molded onto one end.
> Thanks for any help… Jeff
>
>
>
>
>

Re: [QUAD-L] Re: Mouthpiece Search

[Jeffrey Gaede]

Yeah, those don't work for me, Jim. Every time I've searched for sip and puff 
mouthpieces, that's what I find and usually that's all I find. I'm sure they 
are out there somewhere but who knows what they were originally used for.

  From: Jim Lubin <jlu...@eskimo.com>
 To: Jeffrey Gaede <jsga...@yahoo.com> 
Cc: Quad-list Post <quad-list@eskimo.com>
 Sent: Thursday, February 22, 2018 7:03 PM
 Subject: [QUAD-L] Re: Mouthpiece Search
   
I think it got rejected by the list with the photo attached.
I've been using these dental "saliva ejectors" with my sip and puff. They are a 
flexible tube about 5" long with wire embedded so it keeps the shape when you 
bend it. 
http://www.idsdental.com/salivaejectors.html  
On Thu, Feb 22, 2018 at 6:32 PM, Jeffrey Gaede <jsga...@yahoo.com> wrote:

Hello, Folks. I was wondering if you might help searched for something. I have 
a sip and puff controlled wheelchair and back around 2005 I had the perfect 
mouthpieces for this chair. A few years ago I got down to the last mouthpiece 
and went online to order more, only I couldn't find the same thing. I've 
searched a number of times the past couple years and can't come up with 
anything close. It's possible that these were never designed to be sip and puff 
wheelchair mouthpieces, but I'd be more than grateful if someone could locate 
them for me. They are "L-shaped", made of a very sturdy plastic composite, 
giving them a little flex but you couldn't clamp it closed with the tightest 
bite, and there is a "doughnut" molded into one end. The attached picture is of 
the last one I had. It's a little warped because someone tried to wash it in a 
dishwasher, but it would normally be about 5" long, again, L-shaped, and has a 
doughnut molded onto one end. Thanks for any help… Jeff





   

[QUAD-L] Re: Mouthpiece Search

[Jim Lubin]

I think it got rejected by the list with the photo attached.

I've been using these dental "saliva ejectors" with my sip and puff. They
are a flexible tube about 5" long with wire embedded so it keeps the shape
when you bend it.

http://www.idsdental.com/salivaejectors.html


On Thu, Feb 22, 2018 at 6:32 PM, Jeffrey Gaede  wrote:

> Hello, Folks. I was wondering if you might help searched for something. I
> have a sip and puff controlled wheelchair and back around 2005 I had the
> perfect mouthpieces for this chair. A few years ago I got down to the last
> mouthpiece and went online to order more, only I couldn't find the same
> thing. I've searched a number of times the past couple years and can't come
> up with anything close. It's possible that these were never designed to be
> sip and puff wheelchair mouthpieces, but I'd be more than grateful if
> someone could locate them for me. They are "L-shaped", made of a very
> sturdy plastic composite, giving them a little flex but you couldn't clamp
> it closed with the tightest bite, and there is a "doughnut" molded into one
> end. The attached picture is of the last one I had. It's a little warped
> because someone tried to wash it in a dishwasher, but it would normally be
> about 5" long, again, L-shaped, and has a doughnut molded onto one end.
> Thanks for any help… Jeff
>
>

[QUAD-L] Re: [QUAD-L] Seeking info about Medicaid waiver….… Could I obtain nursing care at home using this waiver?

[Quad Dude]

Hello Debra,

It's hard to advise more specifically without knowing what state and city
you live in, but most if not all states have regional Area Agencies on
Aging (AAAs) and most of them provide an Aging and Disability Resource
Connection (ADRC) or some similar service that you should be able to
contact and see what services, waivers, etc. you may be eligible for to
transition from the nursing home to your community. These waiver programs
and services may have waiting lists, some lengthy, so it's best to apply
for and be added to any existing list for eligible support ASAP.

I also encourage you to contact your local Center for Independent Living
(CIL). Like the AAAs and ADRCs, most if not all states have regional CILs,
each serving multiple counties. Many CILs have staff and/or programs
dedicated to transitioning consumers from nursing homes to the community or
helping to prevent them from going to a nursing home for long-term care.

If you provide your state and city I'll be glad to research more specific
information for you.

Steve - C4, 29 years, auto accident

On Tue, Jan 23, 2018 at 5:58 PM, DEBRA DEW  wrote:

>
>
> SEARCHING FOR ANYONE WHO KNOWS ANYTHING ABOUT MEDICAID because I need
> information please.
>
>
> would I be able to use this to get nursing care inside my own home?  Many
> people must because I'm the only person in this country I can find living
> in a nursing home with my disability; they all live in their own homes.
> And they all tell me they are enjoying their lives and are active & get
> out  every day .
>
>  I would give my right nut in hell to be able to get out of this damnable
> room more than twice a year.  This is not living,it is an abhorrent
> repulsive existence biding time praying not to see another sunrise.
>
> https://www.medicaid.gov/medicaid/ltss/self-directed/index.html
> Self Directed Services | Medicaid.gov
> 
> www.medicaid.gov
> The self-directed service delivery model is an alternative to
> traditionally delivered and managed services, such as an agency delivery
> model. Self-direction of ...
>
>
>
>
>
>
>
> *Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot Currently: tetrapeligic due
> to advanced MS and living in a nursing home hell 18 years Phone: 561-58
> 6-9399 SC student 20yrs  … can not brag about my love for YHVH God because
> I fail Him daily, but I can brag about His love for me because He never
> fails me. ROMANS 8:28… Kindness is the language the deaf can hear and the
> blind can see – Mark Twain*
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
>

Re: [QUAD-L] Re: Molded power wheelchair back for scoliosis

[Rose Chase]

I just heard that Medicare has approved my application for a power chair.
I have been trying since May, 2017.  I do not know what was not included
but I have my fingers crossed so I guess I just have to wait. I hope I get
the elevating feature.   Rose

On Fri, Dec 29, 2017 at 6:44 PM, Lori Michaelson 
wrote:

> Bobbie...
>
> Thank you SO much for sharing that information!
>
> Am afraid we all have to go through the rigamo to simply get a part for
> our chairs when these parts are really very inexpensive and do not take
> that long to get (if done right) yet we have to have a prescription to have
> it done and go through what you went through and then still have to pay out
> of pocket if it isn't covered by any insurance. I remember wanting to get a
> more comfortable backing when I was living in Pennsylvania after my
> husband's passing and a guy came out several times but they just couldn't
> find anything that was comfortable for me and my scoliosis and back pain.
> It should have been addressed when the chair was ordered and delivered in
> September of 2011 but it didn't happen. Then my husband died and my life
> took a turn that I never expected so quickly.
>
> You wouldn't believe what I had to go through last year just to get new
> tires.
>
> Thanks again!!!
>
> ~Lori
>
> On Fri, Dec 29, 2017 at 2:31 PM, Bobbie Humphreys <
> bobbiehumphre...@gmail.com> wrote:
>
>> Johnny & Lorie,
>>   I couldn't stand the pain from my scoliosis anymore and
>> had heard of other quads getting a molded back and LOVING it. 4 years ago,
>> when I got my new chair, I going to get fitted for one but I was tired of
>> being manipulated so I declined.
>>
>> In August 2017 I went to see my GP I asked him for an Rx for a molded
>> back for my chair and told him it was because of my scoliosis.
>>
>> With Rx in hand I called my wheelchair vender and asked if I could make
>> an appointment for a molded back August 24th I went to Kessler, where my
>> venter works out of, and was assessed and approved? It wasn't till November
>> 21st that I could get a "fitting" for the molded back. There was an early
>> appointment but the molded back Machine broke.
>>
>> Both appointments were 2 hours long and went by very quickly.
>> I asked how long till I got the back and they said " ... actually it
>> takes longer for insurance approval than for it to be made." I opted to by
>> pass the insurance and pay out-of-pocket which is $1,500 because I wanted
>> it as soon as possible.
>> I believe in would have gotten if it wasn't December. So no I wait.
>> Bobbie
>>
>> "Be the change you want to see in the world". Gandhi
>>
>> On Dec 28, 2017, at 3:05 PM, Lori Michaelson 
>> wrote:
>>
>> Hi Bobbie,
>>
>> I think my PT and OT should have molded my wheelchair back in September
>> of 2011 but they didn't. I wasn't having as severe of a problem with my
>> scoliosis as I am now after what I have been through for the last year so,
>> like Johnny, I was wondering how you were able to get that done?
>>
>> I have to work through Numotion since they are who I got my chair from
>> and any updates or anything has to go through them for Medicare to pay for
>> it. Since I do not have a secondary insurance and I am not on Medicaid I
>> have to pay the 20%. They, of course, want me to get any new chair but my
>> chair is doing fine and my out-of-pocket expense for this chair was $7000
>> since we purchased the elevating feature back then.
>>
>> Thanks in advance! ~Lori
>>
>> On Wed, Dec 27, 2017 at 11:41 PM, Johnny Cammon 
>> wrote:
>>
>>> Hi Bobbie,
>>> thank you for the response. I'm doing okay pretty much, and all is well
>>> with me. I'm glad to hear that you are doing well too. That's always a good
>>> thing I would say. That's great about correcting your back for your pain. I
>>> did not know they could do that. Good luck with that, and keep me posted.
>>> Also have a good new year. Talk later brother.
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>> On Tue, Dec 26, 2017 at 2:59 PM, Bobbie Humphreys <
>>> bobbiehumphre...@gmail.com> wrote:
>>>
  ~~Writing off list 

 Hi Johnny,
   I hope things are good with you, I'm doing pretty good.
 I'm getting molded back for my chair to correct my scoliosis and in turn
 reduce the pain in my back. Otherwise, I'm doing pretty well for 44 post.
 How are you doing?
 Bobbie

 "Be the change you want to see in the world". Gandhi

 > On Dec 25, 2017, at 11:29 PM, Johnny Cammon 
 wrote:
 >
 > I hope everybody is enjoying their Christmas!!
 >
 > --
 > Life not hard!!!

>>>
>>>
>>>
>>> --
>>> Life not hard!!!
>>>
>>
>>
>>
>> --
>> "Petting, scratching and cuddling a dog could be soothing to the mind and
>> heart and deep meditation and almost as good for the soul as prayer." ~Dean
>> Koontz
>>
>>
>
>
> --
> "Petting, 

[QUAD-L] Re: Molded power wheelchair back for scoliosis

[Lori Michaelson]

Bobbie...

Thank you SO much for sharing that information!

Am afraid we all have to go through the rigamo to simply get a part for our
chairs when these parts are really very inexpensive and do not take that
long to get (if done right) yet we have to have a prescription to have it
done and go through what you went through and then still have to pay out of
pocket if it isn't covered by any insurance. I remember wanting to get a
more comfortable backing when I was living in Pennsylvania after my
husband's passing and a guy came out several times but they just couldn't
find anything that was comfortable for me and my scoliosis and back pain.
It should have been addressed when the chair was ordered and delivered in
September of 2011 but it didn't happen. Then my husband died and my life
took a turn that I never expected so quickly.

You wouldn't believe what I had to go through last year just to get new
tires.

Thanks again!!!

~Lori

On Fri, Dec 29, 2017 at 2:31 PM, Bobbie Humphreys <
bobbiehumphre...@gmail.com> wrote:

> Johnny & Lorie,
>   I couldn't stand the pain from my scoliosis anymore and
> had heard of other quads getting a molded back and LOVING it. 4 years ago,
> when I got my new chair, I going to get fitted for one but I was tired of
> being manipulated so I declined.
>
> In August 2017 I went to see my GP I asked him for an Rx for a molded back
> for my chair and told him it was because of my scoliosis.
>
> With Rx in hand I called my wheelchair vender and asked if I could make an
> appointment for a molded back August 24th I went to Kessler, where my
> venter works out of, and was assessed and approved? It wasn't till November
> 21st that I could get a "fitting" for the molded back. There was an early
> appointment but the molded back Machine broke.
>
> Both appointments were 2 hours long and went by very quickly.
> I asked how long till I got the back and they said " ... actually it takes
> longer for insurance approval than for it to be made." I opted to by pass
> the insurance and pay out-of-pocket which is $1,500 because I wanted it as
> soon as possible.
> I believe in would have gotten if it wasn't December. So no I wait.
> Bobbie
>
> "Be the change you want to see in the world". Gandhi
>
> On Dec 28, 2017, at 3:05 PM, Lori Michaelson 
> wrote:
>
> Hi Bobbie,
>
> I think my PT and OT should have molded my wheelchair back in September of
> 2011 but they didn't. I wasn't having as severe of a problem with my
> scoliosis as I am now after what I have been through for the last year so,
> like Johnny, I was wondering how you were able to get that done?
>
> I have to work through Numotion since they are who I got my chair from and
> any updates or anything has to go through them for Medicare to pay for it.
> Since I do not have a secondary insurance and I am not on Medicaid I have
> to pay the 20%. They, of course, want me to get any new chair but my chair
> is doing fine and my out-of-pocket expense for this chair was $7000 since
> we purchased the elevating feature back then.
>
> Thanks in advance! ~Lori
>
> On Wed, Dec 27, 2017 at 11:41 PM, Johnny Cammon 
> wrote:
>
>> Hi Bobbie,
>> thank you for the response. I'm doing okay pretty much, and all is well
>> with me. I'm glad to hear that you are doing well too. That's always a good
>> thing I would say. That's great about correcting your back for your pain. I
>> did not know they could do that. Good luck with that, and keep me posted.
>> Also have a good new year. Talk later brother.
>>
>>
>>
>>
>>
>>
>>
>>
>>
>> On Tue, Dec 26, 2017 at 2:59 PM, Bobbie Humphreys <
>> bobbiehumphre...@gmail.com> wrote:
>>
>>>  ~~Writing off list 
>>>
>>> Hi Johnny,
>>>   I hope things are good with you, I'm doing pretty good.
>>> I'm getting molded back for my chair to correct my scoliosis and in turn
>>> reduce the pain in my back. Otherwise, I'm doing pretty well for 44 post.
>>> How are you doing?
>>> Bobbie
>>>
>>> "Be the change you want to see in the world". Gandhi
>>>
>>> > On Dec 25, 2017, at 11:29 PM, Johnny Cammon 
>>> wrote:
>>> >
>>> > I hope everybody is enjoying their Christmas!!
>>> >
>>> > --
>>> > Life not hard!!!
>>>
>>
>>
>>
>> --
>> Life not hard!!!
>>
>
>
>
> --
> "Petting, scratching and cuddling a dog could be soothing to the mind and
> heart and deep meditation and almost as good for the soul as prayer." ~Dean
> Koontz
>
>


-- 
"Petting, scratching and cuddling a dog could be soothing to the mind and
heart and deep meditation and almost as good for the soul as prayer." ~Dean
Koontz

[QUAD-L] Re: Molded power wheelchair back for scoliosis

[Bobbie Humphreys]

Johnny & Lorie,
  I couldn't stand the pain from my scoliosis anymore and had 
heard of other quads getting a molded back and LOVING it. 4 years ago, when I 
got my new chair, I going to get fitted for one but I was tired of being 
manipulated so I declined.

In August 2017 I went to see my GP I asked him for an Rx for a molded back for 
my chair and told him it was because of my scoliosis.

With Rx in hand I called my wheelchair vender and asked if I could make an 
appointment for a molded back August 24th I went to Kessler, where my venter 
works out of, and was assessed and approved? It wasn't till November 21st that 
I could get a "fitting" for the molded back. There was an early appointment but 
the molded back Machine broke.

Both appointments were 2 hours long and went by very quickly.
I asked how long till I got the back and they said " ... actually it takes 
longer for insurance approval than for it to be made." I opted to by pass the 
insurance and pay out-of-pocket which is $1,500 because I wanted it as soon as 
possible.
I believe in would have gotten if it wasn't December. So no I wait.
Bobbie 

"Be the change you want to see in the world". Gandhi

> On Dec 28, 2017, at 3:05 PM, Lori Michaelson  wrote:
> 
> Hi Bobbie,
> 
> I think my PT and OT should have molded my wheelchair back in September of 
> 2011 but they didn't. I wasn't having as severe of a problem with my 
> scoliosis as I am now after what I have been through for the last year so, 
> like Johnny, I was wondering how you were able to get that done?
> 
> I have to work through Numotion since they are who I got my chair from and 
> any updates or anything has to go through them for Medicare to pay for it. 
> Since I do not have a secondary insurance and I am not on Medicaid I have to 
> pay the 20%. They, of course, want me to get any new chair but my chair is 
> doing fine and my out-of-pocket expense for this chair was $7000 since we 
> purchased the elevating feature back then.
> 
> Thanks in advance! ~Lori
> 
>> On Wed, Dec 27, 2017 at 11:41 PM, Johnny Cammon  
>> wrote:
> 
>> Hi Bobbie,
>> thank you for the response. I'm doing okay pretty much, and all is well with 
>> me. I'm glad to hear that you are doing well too. That's always a good thing 
>> I would say. That's great about correcting your back for your pain. I did 
>> not know they could do that. Good luck with that, and keep me posted. Also 
>> have a good new year. Talk later brother.
>> 
>> 
>> 
>> 
>> 
>> 
>> 
>> 
>> 
>>> On Tue, Dec 26, 2017 at 2:59 PM, Bobbie Humphreys 
>>>  wrote:
>>>  ~~Writing off list 
>>> 
>>> Hi Johnny,
>>>   I hope things are good with you, I'm doing pretty good. I'm 
>>> getting molded back for my chair to correct my scoliosis and in turn reduce 
>>> the pain in my back. Otherwise, I'm doing pretty well for 44 post.
>>> How are you doing?
>>> Bobbie
>>> 
>>> "Be the change you want to see in the world". Gandhi
>>> 
>>> > On Dec 25, 2017, at 11:29 PM, Johnny Cammon  wrote:
>>> >
>>> > I hope everybody is enjoying their Christmas!!
>>> >
>>> > --
>>> > Life not hard!!!
>> 
>> 
>> 
>> -- 
>> Life not hard!!!
> 
> 
> 
> -- 
> "Petting, scratching and cuddling a dog could be soothing to the mind and 
> heart and deep meditation and almost as good for the soul as prayer." ~Dean 
> Koontz

[QUAD-L] Re: [QUAD-L] When commanding Dragon NaturallySpeaking to "go to sleep", it will occasionally unload the program.… On the new commuter about twice a day

[Randy Anderson]

Hello Debra,

You could try training "Go to sleep" a few times. This may not work but is
relatively easy to do, and can't hurt.
If it does seem to help or if you solve the problem, I would suggest
sometime when it's working well repeat the command for "Go to Sleep" and
"Wake-up "
multiple times.
For me, it seems like if I'm having trouble with Dragon understanding me
it's best that I train it when I first get on the computer and if it goes
well save it in your profile and restart your computer.
Also when you're closing Dragon and it asked you if you want to save your
profile, save it if you've had a good session and if it wasn't a good
session don't save it.
Little things, but maybe it would help.
Randy

On Fri, Dec 22, 2017 at 10:04 AM, DEBRA DEW  wrote:

> please tell me if you have any idea what I am doing to cause this.
> Whatever it is I certainly need to correct it quickly, because it can take
> an hour or two or more for me to have a nurse come check on me and give me
> assistance.
>
>
>
> When I  give the command to Dragon NaturallySpeaking to "go to sleep", the
> program will unload about twice a day.
>
>
>
>

[QUAD-L] Re: [QUAD-L] Nursing homes 

[Dana Wray]

*Subject:* Help Us Protect Affordable Health Care for People with
Disabilities!
 To prevent going to nursing homes please   Call your Senators and
represented and asking them not to include my mandate that will cut care by
capital resources that we need to live independently through the Medicaid
waiver. If you don’t know that congressional hotline I will get it in the
next email to you. You can use this letter to click on it and it will send
your message to me   I will send you the 800-number.
Thank you,
Dana


[image: Creating life-changing solutions so that people with disabilities
can live, learn, work and play.]


Dear Dana,

*Attacks on the* *Affordable Care Act* (ACA) are back, and this time
connected to the latest tax bill.

This week, *the U.S. Senate is debating a tax bill
 that
includes a new provision to repeal the ACA’s individual mandate*. The
Congressional
Budget Office
 said
premiums would increase and the number of Americans insured would decrease
if this ACA provision is repealed.

*Individuals with disabilities and others with pre-existing conditions need
access to affordable, comprehensive health care that protects against
discrimination and includes bans on annual and lifetime limits*.

*Help us protect the ACA*, which Easterseals strongly supports for meeting
our board-approved health care principles
.
*Please click on the line below to write your Senators and also call them*
*TAKE ACTION NOW*:* Ask your Senators to oppose efforts to repeal parts of
the ACA within tax legislation
*.

Thank you,

Joe Kern
Chairman of the Board
Easterseals, Inc.


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On Sat, Dec 2, 2017 at 5:17 AM Ron M Pracht  wrote:

> Your doing right to get on the list, but don't fool yourself, they are
> death houses with people that don't care. Get everyday you can out of one
> because they wont take care of you properly. Make it a last resortI
> would debate killing myself before entering but probally wouldn't have the
> guts.
>
> Ron
>
>
> On Wednesday, November 29, 2017 9:07 PM, Bobbie Humphreys <
> bobbiehumphre...@gmail.com> wrote:
>
>
> I'm 62 and 44 years post C-5,6 living in New Jersey with my sweet Pete
> who's been taking care of me 24/7/365 for over 30 years.
> We started talking about looking into a nursing home  for me in case
> something should happen to Pete.
> I've been terrified for 44 years because of stories I've heard and me
> visiting other quad friends in nursing homes.
> This year I've been making tough phone calls and visiting places so I will
> be informed and take away some fear.
>
> My mom was just put into a nursing home  April 2017 45 minutes away. It
> is so very clean, the staff is kind, attentive and compassionate and run
> and owned by filipino people.
> My insurance is Medicaid and that means there is a 2-3 year waiting list.
> So I'm going to fill one out. I can't believe I just typed that last
> sentence. Other places have no waiting list at all ... red flag ⛳️ to me.
> This place, Merry Heart, has had quads before so I won't be the first.
>
> Anybody have any advice for me?
> Bobbie
>
> "Be the change you want to see in the world". Gandhi
>
>
>

[QUAD-L] Re: [QUAD-L] Book  sets

[Noel]

There's a series called Millennium that I enjoyed reading, The Girl
with the Dragon Tattoo,
The Girl Who Played with Fire, and
The Girl Who Kicked the Hornets' Nest.

There's a Hollywood movie about the 1st one, and foreign films about all 3.

On Fri, Nov 24, 2017 at 2:49 PM, Bobbie Humphreys
 wrote:
> Dose anybody know of a good author that has a book  set or series I can get 
> for my 30 year old niece who is a nurse that eats books
> Bobbie
>
> "Be the change you want to see in the world". Gandhi

[QUAD-L] Re: [QUAD-L] Book  sets

[Jim Lubin]

I was also going to suggest Outlander. I really enjoy the TV series and
know it is based on a book series.

On Fri, Nov 24, 2017 at 2:25 PM, Jeffrey Gaede  wrote:

> My roommate says to try the book series Outlander, by Diane Gabaldon. You
> can also find the TV series on Stars…
>
>
> --
> *From:* Jeffrey Gaede 
> *To:* Danny Hearn ; Bobbie Humphreys <
> bobbiehumphre...@gmail.com>; "quad-list@eskimo.com" 
>
> *Sent:* Friday, November 24, 2017 1:59 PM
>
> *Subject:* Re: [QUAD-L] Book  sets
>
> Oh gosh, oh gosh, can't stop laughing, just long enough to type…
>
>
> --
> *From:* Danny Hearn 
> *To:* Bobbie Humphreys ; "quad-list@eskimo.com"
> 
> *Sent:* Friday, November 24, 2017 1:57 PM
> *Subject:* Re: [QUAD-L] Book  sets
>
> Well BobbieIf she Eats them, I'd suggest a Steak and Potato flavored
> one.  ;-)
>
>
> On Friday, November 24, 2017 3:49 PM, Bobbie Humphreys <
> bobbiehumphre...@gmail.com> wrote:
>
>
> Dose anybody know of a good author that has a book  set or series I can
> get for my 30 year old niece who is a nurse that eats books
> Bobbie
>
> "Be the change you want to see in the world". Gandhi
>
>
>
>
>
>
>

[QUAD-L] Re: [QUAD-L] Dictation box copying everything in Dragon NaturallySpeaking… Please, how to make it stop

[Noel]

Does version 12.5 use the dictation box? If so, unfortunately that's the
way it works.  When you transfer the text from the dictation box, it pastes
it when you click the transfer button. I'm using version 14, with it you
can choose not to use the dictation box, but you would have to experiment.

On Tue, Nov 21, 2017 at 9:09 AM, DEBRA DEW  wrote:

> On both my lap tops I've had to go back to Dragon 12.5, because Dragon 13
> drove me crazy crashing etc.
>
>
> I have beat the bushes trying to figure out how to stop it from copying
> everything without success for months and is driving me crazy because I
> lose whatever I had copied previously.
>
>
> If anyone can tell me how to make Dragon stop copying the dictation box
> contents, please tell me.
>
>
>
>
>
> *Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9*
>
>
>
>
> *Formerly: Homeschooling mom of 9 and pvt. pilot Currently: tetrapeligic
> due to advanced MS and living in a nursing home hell 18 years Phone: 561-58
> 6-9399 SC student 20yrs  ROMANS 8:28… Kindness is the language the deaf can
> hear and the blind can see – Mark Twain*
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
>

[QUAD-L] Re: [QUAD-L] Problems with Dragon NaturallySpeaking 13… I just had to reinstall 12.5

[Billy Lang]

Guys,

I’m a little late answering this post because I was hospitalized for a while. 
I’m better now so here goes:
Nuance as the company has turned the corner from being the premier voice 
software to becoming a mega marketing platform. None of the speech products are 
up to production code. Personally I am using voice for Mac professional and 
over the last 6 months I’ve had at least 700 crashes. He version 5 of the 
program was so bad • that they had pull it back from production. That did not 
mean giving everyone their money back and just put out a version 6 and charge 
everyone $249 for an upgrade. That upgrade was unintelligible until version 
6.02, which only crashed every 30 minutes.

It wasn’t merely time-consuming going from release to release but it meant 
training and retraining every version that came out. I am currently running 
6.07 and it does not crash as much as long as I do not have too many things on 
the screen at the same time. It seems that Dragon must keep its eye on every 
button, link or words in its memory in order to navigate properly.

You are not the only one who has mistakingly upgraded their equipment due to 
Nuance malfeasance. Their user forum, once a place to solve problems or share 
experiences just mysteriously closed down when user population use the forum 
for nothing but suing Nuance for false advertising and loss hours of production.

This was not the only people who are buying $300-$400 one time boxes. The 
lawyers and doctors who pay thousands of dollars to build the practices upon 
which recognition of also lost out.

The competition is starting to squeeze Nuance out on the voice recognition 
arena.  Programs like Siri and Alexa are already composing messages small emails
> On Nov 2, 2017, at 11:42 AM, DEBRA DEW  wrote:
> 
> I bought the fastest Dell computer I could about six months ago to be able to 
> run Dragon naturally speaking 13 optimally, and at least once a month it was 
> crashing so badly I had to have a computer guy come fix it will.  Aside from 
> the fact that I could've bought another computer for the money I spent on 
> repairs, I finally got the brilliant idea after reinstalling Windows and 
> everything else repeatedly that that was not the problem and I suspected 
> something was wrong with the Dragon 13 program.  So although they had my 
> computer for over a week, I finally got it back last week with 12.5 
> reinstalled and so far no crashes.  The only difference I can tell in the two 
> programs is that with Dragon 13 trading the profile was not required, but 
> that only took me a few minutes anyway so that's really not an issue to me.  
> I never had recognition issues with either program unless the profile was 
> becoming corrupted and then all I did was make a new profile.  Not a big deal.
> 
> I just wanted to share this with you guys in case you were not aware of it.  
> Obviously Dragon has a monopoly and they do not care about their customers 
> satisfaction any longer.  It would've been very graciously polite they would 
> share the news about their newest release not being so hot, and saved us a 
> lot of difficulties figuring out what was going on.
> 
> http://www.knowbrainer.com/forums/forum/messageview.cfm?FTVAR_FORUMVIEWTMP=Linear=4=23784=true
>  
> 
>  
> 
> Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot
> Currently: Quadrapeligic due to advanced MS and living in a nursing home
> Phone: 561-588-4333
> SC student 20yrs  
> ROMANS 8:28
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH 

Re: [QUAD-L] Re: [QUAD-L] Problems with Dragon NaturallySpeaking 13… I just had to reinstall 12.5

[Jeffrey Gaede]

I've been using some form of "Dragon" since I believe it was called ViaVoice by 
IBM. Somewhere along the line they became DragonDictate, which was extremely 
stable, easy to use, and worked really well. I don't know how many times the 
product has been sold but eventually it became Dragon NaturallySpeaking 
(differently named under v15) and was tailored more for commercial than private 
use. That was the "downfall." But I work 40 hours a week without the use of my 
hands and need the product. If I eventually have to go to something completely 
different, I will, but until then I'll take my chances with "Dragon." Seems to 
me that a lot of the problems it has has to do with continuously upgraded 
computer software. For example, "Dragon" seems to work best with Internet 
Explorer, browser-wise, but I've found out, if accurate, that without Adobe 
Acrobat, I've had issues. I moved to Firefox but simply ran into other 
problems. Lately I've been using Chrome and it's been tolerable. With regards 
to Nuance's customer support, I won't use the kind of language I should. They 
suck and have for as long as I can remember. My hope is that the product gets 
sold to some company that cares as much about the product being used by 
individuals with disabilities as it does the commercial use of its product. Jeff

  From: Billy Lang <blan...@icloud.com>
 To: DEBRA DEW <n14...@hotmail.com> 
Cc: quad-list <quad-list@eskimo.com>
 Sent: Saturday, November 4, 2017 10:45 AM
 Subject: [QUAD-L] Re: [QUAD-L] Problems with Dragon NaturallySpeaking 13… I 
just had to reinstall 12.5
   
Guys,
I’m a little late answering this post because I was hospitalized for a while. 
I’m better now so here goes:Nuance as the company has turned the corner from 
being the premier voice software to becoming a mega marketing platform. None of 
the speech products are up to production code. Personally I am using voice for 
Mac professional and over the last 6 months I’ve had at least 700 crashes. He 
version 5 of the program was so bad • that they had pull it back from 
production. That did not mean giving everyone their money back and just put out 
a version 6 and charge everyone $249 for an upgrade. That upgrade was 
unintelligible until version 6.02, which only crashed every 30 minutes.
It wasn’t merely time-consuming going from release to release but it meant 
training and retraining every version that came out. I am currently running 
6.07 and it does not crash as much as long as I do not have too many things on 
the screen at the same time. It seems that Dragon must keep its eye on every 
button, link or words in its memory in order to navigate properly.
You are not the only one who has mistakingly upgraded their equipment due to 
Nuance malfeasance. Their user forum, once a place to solve problems or share 
experiences just mysteriously closed down when user population use the forum 
for nothing but suing Nuance for false advertising and loss hours of production.
This was not the only people who are buying $300-$400 one time boxes. The 
lawyers and doctors who pay thousands of dollars to build the practices upon 
which recognition of also lost out.
The competition is starting to squeeze Nuance out on the voice recognition 
arena.  Programs like Siri and Alexa are already composing messages small 
emails. Ready for prime time voice recognition for the desktop is almost here. 
Patients and don’t buy any more hardware if you suspect it will make Nuance any 
better.

 Billy

On Nov 2, 2017, at 11:42 AM, DEBRA DEW <n14...@hotmail.com> wrote:
I bought the fastest Dell computer I could about six months ago to be able to 
run Dragon naturally speaking 13 optimally, and at least once a month it was 
crashing so badly I had to have a computer guy come fix it will.  Aside from 
the fact that I could've bought another computer for the money I spent on 
repairs, I finally got the brilliant idea after reinstalling Windows and 
everything else repeatedly that that was not the problem and I suspected 
something was wrong with the Dragon 13 program.  So although they had my 
computer for over a week, I finally got it back last week with 12.5 reinstalled 
and so far no crashes.  The only difference I can tell in the two programs is 
that with Dragon 13 trading the profile was not required, but that only took me 
a few minutes anyway so that's really not an issue to me.  I never had 
recognition issues with either program unless the profile was becoming 
corrupted and then all I did was make a new profile.  Not a big deal.
I just wanted to share this with you guys in case you were not aware of it.  
Obviously Dragon has a monopoly and they do not care about their customers 
satisfaction any longer.  It would've been very graciously polite they would 
share the news about their newest release not being so hot, and saved us a lot 
of difficulties figuring out what was going on.
http://www.knowbr

[QUAD-L] Re: [QUAD-L] Problems with Dragon NaturallySpeaking 13… I just had to reinstall 12.5

[Billy Lang]

Guys,

I’m a little late answering this post because I was hospitalized for a while. 
I’m better now so here goes:
Nuance as the company has turned the corner from being the premier voice 
software to becoming a mega marketing platform. None of the speech products are 
up to production code. Personally I am using voice for Mac professional and 
over the last 6 months I’ve had at least 700 crashes. He version 5 of the 
program was so bad • that they had pull it back from production. That did not 
mean giving everyone their money back and just put out a version 6 and charge 
everyone $249 for an upgrade. That upgrade was unintelligible until version 
6.02, which only crashed every 30 minutes.

It wasn’t merely time-consuming going from release to release but it meant 
training and retraining every version that came out. I am currently running 
6.07 and it does not crash as much as long as I do not have too many things on 
the screen at the same time. It seems that Dragon must keep its eye on every 
button, link or words in its memory in order to navigate properly.

You are not the only one who has mistakingly upgraded their equipment due to 
Nuance malfeasance. Their user forum, once a place to solve problems or share 
experiences just mysteriously closed down when user population use the forum 
for nothing but suing Nuance for false advertising and loss hours of production.

This was not the only people who are buying $300-$400 one time boxes. The 
lawyers and doctors who pay thousands of dollars to build the practices upon 
which recognition of also lost out.

The competition is starting to squeeze Nuance out on the voice recognition 
arena.  Programs like Siri and Alexa are already composing messages small 
emails. Ready for prime time voice recognition for the desktop is almost here. 
Patients and don’t buy any more hardware if you suspect it will make Nuance any 
better.


 Billy
> On Nov 2, 2017, at 11:42 AM, DEBRA DEW  wrote:
> 
> I bought the fastest Dell computer I could about six months ago to be able to 
> run Dragon naturally speaking 13 optimally, and at least once a month it was 
> crashing so badly I had to have a computer guy come fix it will.  Aside from 
> the fact that I could've bought another computer for the money I spent on 
> repairs, I finally got the brilliant idea after reinstalling Windows and 
> everything else repeatedly that that was not the problem and I suspected 
> something was wrong with the Dragon 13 program.  So although they had my 
> computer for over a week, I finally got it back last week with 12.5 
> reinstalled and so far no crashes.  The only difference I can tell in the two 
> programs is that with Dragon 13 trading the profile was not required, but 
> that only took me a few minutes anyway so that's really not an issue to me.  
> I never had recognition issues with either program unless the profile was 
> becoming corrupted and then all I did was make a new profile.  Not a big deal.
> 
> I just wanted to share this with you guys in case you were not aware of it.  
> Obviously Dragon has a monopoly and they do not care about their customers 
> satisfaction any longer.  It would've been very graciously polite they would 
> share the news about their newest release not being so hot, and saved us a 
> lot of difficulties figuring out what was going on.
> 
> http://www.knowbrainer.com/forums/forum/messageview.cfm?FTVAR_FORUMVIEWTMP=Linear=4=23784=true
>  
> 
>  
> 
> Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot
> Currently: Quadrapeligic due to advanced MS and living in a nursing home
> Phone: 561-588-4333
> SC student 20yrs  
> ROMANS 8:28
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH 

[QUAD-L] Re: [QUAD-L] Computer defrag question about Dragon naturally speaking being loaded upon completion… Can it be done automatically instead of manually

[Dana Wray]

--
*Subject:* NCART Action Alert for H.R. 3730



November 1, 2017

CRT Stakeholders and Friends,

Your action is needed this week to get your Congressional Representative to
protect access to CRT Manual Wheelchair Accessories by cosponsoring H.R.
3730.

This year is quickly coming to a close and Congress is busier than ever.
We need thousands of CRT stakeholders to write and call their
Representatives to ask them to cosponsor and pass H.R. 3730, which would
prevent CMS from applying Competitive Bid pricing to accessories used with
CRT Manual Wheelchairs.

It will take you less than 5 minutes to take the first step!  Go to the
H.R. 3730 section at www.protectmymobility.org

.  Use the prepared emails and talking points to quickly communicate with
your Representative and get them to sign on as a cosponsor.

CRT Power Wheelchair accessories have been protected.  Let's finish the job
and ensure that CRT Manual Wheelchair accessories are protected too!








Regards,

Don

Donald E. Clayback
Executive Director | NCART
Office 716-839-9728 | Cell 716-913-4754
dclayb...@ncart.us | www.ncart.us


P.S. If you know of any other stakeholders that would like to receive
updates like these, have them join our mailing list here

!
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Try it free today 


On Thu, Nov 2, 2017 at 7:22 PM, DEBRA DEW  wrote:

>
>
> If I set my computer to optimize itself (defrag) while I am asleep, when I
> wake up while my computer still be on with Dragon NaturallySpeaking loaded
> and able to work?
>
>
> I don't want to wake up and be stranded in my room without anyone around
> to load Dragon for me so I can use the computer leaving me essentially
> stranded without communication, immobilized in my bed.
>
>
>
>
>
>
>
> *Debra 

[QUAD-L] RE: [QUAD-L] Re: [QUAD-L] Problems with Dragon NaturallySpeaking 13. I just had to reinstall 12.5

[Raymond Kelly]

I have been using knowbrainer along with NaturallySpeaking for several years
now. I find it VERY helpful. I probably don't use 1% of its capabilities,
but I wouldn't know what to do without it. Like it said the program is free
to anybody with disabilities. Proving that you are disabled is not a hard
job. I strongly recommend to anybody who uses NaturallySpeaking very much to
get the knowbrainer software. While I am at it there is one more aftermarket
program that goes by the name of SpeechStart +. I don't know if that is free
to disabled people are not. Even if it isn't it doesn't cost much. I find
that program very useful also. If you looked it up on the Internet you will
see how useful it is. The main part of it that I really like is that if
NaturallySpeaking freezes up you can restart Dragon totally by voice. There
are some other neat little features, but that is the main one I use. I hope
this helps with your decision.
Kelray

Has anybody tried knowbrainer's software? Here's a page that says persons
with a disability can get a free copy, wonder if it's too good to be true,
usually somewhat expensive.

http://www.knowbrainer.com/core/pages/freeKB.cfm

On Thu, Nov 2, 2017 at 9:42 AM, DEBRA DEW  wrote:
I bought the fastest Dell computer I could about six months ago to be able
to run Dragon naturally speaking 13 optimally, and at least once a month it
was crashing so badly I had to have a computer guy come fix it will.  Aside
from the fact that I could've bought another computer for the money I spent
on repairs, I finally got the brilliant idea after reinstalling Windows and
everything else repeatedly that that was not the problem and I suspected
something was wrong with the Dragon 13 program.  So although they had my
computer for over a week, I finally got it back last week with 12.5
reinstalled and so far no crashes.  The only difference I can tell in the
two programs is that with Dragon 13 trading the profile was not required,
but that only took me a few minutes anyway so that's really not an issue to
me.  I never had recognition issues with either program unless the profile
was becoming corrupted and then all I did was make a new profile.  Not a big
deal.

I just wanted to share this with you guys in case you were not aware of it.
Obviously Dragon has a monopoly and they do not care about their customers
satisfaction any longer.  It would've been very graciously polite they would
share the news about their newest release not being so hot, and saved us a
lot of difficulties figuring out what was going on.

http://www.knowbrainer.com/forums/forum/messageview.cfm?FTVAR_FORUMVIEWTMP=L
inear=4=23784=true 

Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
Formerly: Homeschooling mom of 9 and pvt. pilot
Currently: Quadrapeligic due to advanced MS and living in a nursing home
Phone: 561-588-4333
SC student 20yrs  
ROMANS 8:28 
B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH 

[QUAD-L] Re: [QUAD-L] Problems with Dragon NaturallySpeaking 13… I just had to reinstall 12.5

[Noel]

Has anybody tried knowbrainer's software? Here's a page that says persons
with a disability can get a free copy, wonder if it's too good to be true,
usually somewhat expensive.

http://www.knowbrainer.com/core/pages/freeKB.cfm

On Thu, Nov 2, 2017 at 9:42 AM, DEBRA DEW  wrote:

> I bought the fastest Dell computer I could about six months ago to be able
> to run Dragon naturally speaking 13 optimally, and at least once a month it
> was crashing so badly I had to have a computer guy come fix it will.  Aside
> from the fact that I could've bought another computer for the money I spent
> on repairs, I finally got the brilliant idea after reinstalling Windows and
> everything else repeatedly that that was not the problem and I suspected
> something was wrong with the Dragon 13 program.  So although they had my
> computer for over a week, I finally got it back last week with 12.5
> reinstalled and so far no crashes.  The only difference I can tell in the
> two programs is that with Dragon 13 trading the profile was not required,
> but that only took me a few minutes anyway so that's really not an issue to
> me.  I never had recognition issues with either program unless the profile
> was becoming corrupted and then all I did was make a new profile.  Not a
> big deal.
>
>
> I just wanted to share this with you guys in case you were not aware of
> it.  Obviously Dragon has a monopoly and they do not care about their
> customers satisfaction any longer.  It would've been very graciously polite
> they would share the news about their newest release not being so hot, and
> saved us a lot of difficulties figuring out what was going on.
>
>
> http://www.knowbrainer.com/forums/forum/messageview.cfm?
> FTVAR_FORUMVIEWTMP=Linear=4=23784=true
>
>
>
>
>
>
>
> *Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot Currently: Quadrapeligic
> due to advanced MS and living in a nursing home Phone: 561-588-4333
> <(561)%20588-4333> SC student 20yrs  ROMANS 8:28*
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
>

[QUAD-L] Re: Chair Issues

[Ron M Pracht]

You need a handle old man to rig that leg rest for the time being.
Ron  

On Sunday, September 17, 2017 8:46 PM, greg  wrote:
 

 My chair has the single post leg rest that 
can move up / down. After years of hitting things, scraping ramps, etc. I went 
down a curb and the leg rest hit the ground. Sheered the whole leg rest unit 
off. Snapped the metal. Still trying to get a new chair. But they haven't even 
ordered it yet. The issue has been finding a chair that does everything I want. 
I need tilt, recline, seat elevator, and want the speed package. The Quantum 
Edge Z can't do both elevator and speed package together.The Quickie can, but 
then looses the True Traction or what ever its called. But will probably go for 
it. I hope to get it settled in the next few days. Greg 

   

RE: [QUAD-L] Re: Meditation and guidance

[Julie Napper]

Thanks for this info!

Julie



Sent from my Samsung Galaxy Tab®4


 Original message 
From: Lori Michaelson <lorilivin...@gmail.com>
Date: 9/6/2017 10:34 PM (GMT-07:00)
To: quad-list <quad-list@eskimo.com>
Subject: [QUAD-L] Re: Meditation and guidance

I don't mean to take the attention, promotion or suggestions or anything away 
from Bobbie regarding meditation and letting her help you with it if you so 
desire.

I just wanted to make anyone interested aware that YouTube has a super a 
variety of guided meditation for so many different types of issues.

For example, I have chronic pain. I used to belong to this big community back 
in 2010 called something like Project Meditation or the The Intention 
Experiment or perhaps it was something else. I was made aware of an individual 
named Rita Hickman. She is very good at guided meditation and there are many 
out hers on YouTube for either pain or anxiety or stress or just relaxation or 
numerous other things.

If you don't want to be tied up a long time (like an hour or so) here is one 
that I used to listen to almost every evening after losing my husband. It is 
for pain and it is only 15 minutes. https://www.youtube.com/watch?v=2kVKx-6uzsE

Like with anything you watch on YouTube there is a list out of sight of other 
suggestions that you might like. In other words you might find another one if 
you are looking for a guided meditation (listening with your earphones so other 
noises are grounded out) and you listen to a soft voice with or without a soft 
music to guide you through pain or stress or anxiety or whatever. You can 
choose one that is an hour or longer than an hour or 30 minutes or a variety of 
other times.

Just trying to help!

~Lori



--
"Petting, scratching and cuddling a dog could be soothing to the mind and heart 
and deep meditation and almost as good for the soul as prayer." ~Dean Koontz

[QUAD-L] Re: Meditation and guidance

[Lori Michaelson]

I don't mean to take the attention, promotion or suggestions or anything
away from Bobbie regarding meditation and letting her help you with it if
you so desire.

I just wanted to make anyone interested aware that YouTube has a super a
variety of guided meditation for so many different types of issues.

For example, I have chronic pain. I used to belong to this big community
back in 2010 called something like Project Meditation or the The Intention
Experiment or perhaps it was something else. I was made aware of an
individual named Rita Hickman. She is very good at guided meditation and
there are many out hers on YouTube for either pain or anxiety or stress or
just relaxation or numerous other things.

If you don't want to be tied up a long time (like an hour or so) here is
one that I used to listen to almost every evening after losing my husband.
It is for pain and it is only 15 minutes.
https://www.youtube.com/watch?v=2kVKx-6uzsE

Like with anything you watch on YouTube there is a list out of sight of
other suggestions that you might like. In other words you might find
another one if you are looking for a guided meditation (listening with your
earphones so other noises are grounded out) and you listen to a soft voice
with or without a soft music to guide you through pain or stress or anxiety
or whatever. You can choose one that is an hour or longer than an hour or
30 minutes or a variety of other times.

Just trying to help!

~Lori



-- 
"Petting, scratching and cuddling a dog could be soothing to the mind and
heart and deep meditation and almost as good for the soul as prayer." ~Dean
Koontz

[QUAD-L] RE: alternating air pressure mattress

[Gail Overton]

We have this same one and all you can do is put the pressure up and down; my 
husband keeps it at around 11 oclock. He has never had a pressure sore on this 
mattress, but it does not rotate you. It does "alternate" the pressure when you 
have it on that mode like every half hour or so. You will hear the air flowing 
around, but it's hard to feel. Sorry it is not comfortable for you.

From: DEBRA DEW [mailto:n14...@hotmail.com]
Sent: Friday, August 04, 2017 12:19 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] alternating air pressure mattress




I think I ordered the wrong one, because I've had it on my bed for 48 hours now 
and cannot get it to be comfortable.. I keep having to  put a bed pillow 
underneath my derrière..





It doesn't have an adjustment asking for the patient's weight, only a  way to 
adjust the pressure up and down. And I would like it to rotate me slightly as 
often as possible  to relieve the pressure points, and I felt absolutely no 
movement at all  and there is no way to tell it  the time intervals between the 
movement,, such as every 20 minutes, etc.



This is the one I 
ordered...http://therapysupport.com/pdfs/manuals/mattresses/Drive%20Med-Aire%20APM%20Manual.pdf
 On page 7  on thtthe instructions online, it shows a picture of the control 
box and tells what eeeach button does..





Please give me your opinions because I have no one else knowledgeable to ask. 
Thank you all so much
Med-Aire 8" Alternating Pressure Mattress Replacement 
...
therapysupport.com
Med-Aire 8" Alternating Pressure Mattress Replacement System With Low Air Loss 
Item # 14027 www.drivemedical.com OPERATOR'S MANUAL


Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
Formerly: Homeschooling mom of 9 and pvt. pilot
Currently: Quadrapeligic due to advanced MS and living in a nursing home
Phone: 561-588-4333
SC student 20yrs
ROMANS 8:28
B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH

[QUAD-L] RE: [QUAD-L] Joan. Mouth stick question. Touchscreen compatible?

[Joan Anglin]

https://www.etsy.com/listing/64832134/mouthstick-stylus

 

From: DEBRA DEW [mailto:n14...@hotmail.com] 
Sent: 10 June, 2017 10:43 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] Joan. Mouth stick question. Touchscreen compatible?

 

mouth stick question.  I need it to use on a touchscreen, and from the
website, I cannot figure out if it will work with a  touchscreen. Do you
know? And which one should I purchase?  They have a few different models.

 

Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
Formerly: Homeschooling mom of 9 and pvt. pilot
Currently: Quadrapeligic due to advanced MS and living in a nursing home
Phone: 561-588-4333
SC student 20yrs  
ROMANS 8:28 

B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH 

[QUAD-L] RE: [QUAD-L] mouth stick. If you use one please tell me about it because I need one desperately

[Joan Anglin]

They work great.
https://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Dindustrial
d-keywords=mouthstick

 

From: DEBRA DEW [mailto:n14...@hotmail.com] 
Sent: 10 June, 2017 10:21 AM
To: quad-list@eskimo.com
Subject: [QUAD-L] mouth stick. If you use one please tell me about it
because I need one desperately

 

 

 

Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
Formerly: Homeschooling mom of 9 and pvt. pilot
Currently: Quadrapeligic due to advanced MS and living in a nursing home
Phone: 561-588-4333
SC student 20yrs  
ROMANS 8:28 

B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH 

Re: [QUAD-L] Re: Pressure wound advice

[wheelchair]

Are you a candidate for having your butt, pressure mapped, just to be sure  
its not your chair or the cushion.
Best Wishes
 
 
In a message dated 5/18/2017 6:03:37 P.M. Central Daylight Time,  
bmatt...@earthlink.net writes:

Thanks, everyone, for your comments and  feedback.  It's interesting how 
different people have very different  experiences.  I don't yet have the Wound 
VAC but should have it soon.  Oddly, sitting in my chair does not seem to 
be the cause of the pressure  wound.  So maybe it's my bed.  I find it hard 
to breathe when I lie  on my side very long, hope a different mattress will 
help.  Frustrating,  not knowing the cause or the best solution.  But you all 
give me hope  that there WILL BE a solution, eventually.  Peace!

Re: [QUAD-L] Re: Pressure wound advice

[Lori Michaelson]

Yes, I forgot to mention in my post what Larry just did... it is extremely
difficult to keep the wound vac on... even when laying perfectly still. Any
little movement will make the alarm go off because the seal is breaking
loose. It was my husband who had to be on top of that all the time.

The event that stuck out to me the most was that since the wound vac sucks
out any bad stuff that might be in the wound... it did very little of that
to me as the one thing I COULD see was some of the tubing. But what I could
see was a fluorescent neon green color of whatever was in my wound was
being sucked out so I guess I must be part Martian. :-)

On Thu, May 18, 2017 at 6:01 PM, Larry Willis <lwillis82...@gmail.com>
wrote:

> Pressure sores on my butt have been an issue for years. I have used the
> wound VAC more than once. The most difficult part for me was maintaining a
> tight seal. The contours of the butt and the tailbone are not conducive to
> a tight seal. The wound vac is very effective, though. So is good nutrition
> and heavy doses of protein as someone has already said. God bless and good
> luck.
>
> Sent from my iPad
>
> Begin forwarded message:
>
> *Resent-From:* quad-list@eskimo.com
> *From:* "Kay at Amplified Agility" <k...@amplifiedagility.com>
> *Date:* May 18, 2017 at 7:13:00 PM EDT
> *To:* "'Ben Mattlin'" <bmatt...@earthlink.net>, <quad-list@eskimo.com>
> *Subject:* *RE: [QUAD-L] Re: Pressure wound advice*
>
> Hi Ben –
>
>
>
> I have seen the replies and just want to chime in with a “remember that
> wounds are an inside out and outside in” issue…meaning gut health, presence
> or not of “opportunistic critters” in the gut, nutritional status etc. are
> really important.  Also, when you have a wound as you are describing you
> need considerably more protein and other micronutrients to facilitate
> healing as well….I hope you have a knowledgeable nutritionist on your team.
>
>
>
> We deal with this a lot…
>
>
>
>
>
>
>
> 
>
> *Kay Lathrop*
> Program Director, Amplified Agility, LLC
>
> 1-619-501-3752 | www.amplifiedagility.com |
> 4275 Executive Square, Suite 200 La Jolla, CA 92037
>
> [image:
> https://s3.amazonaws.com/images.wisestamp.com/icons_32/facebook.png]
> <http://www.facebook.com/kay.lathrop.14> [image:
> https://s3.amazonaws.com/images.wisestamp.com/icons_32/linkedin.png]
> <http://www.linkedin.com/in/kaylathrop/> [image:
> https://s3.amazonaws.com/images.wisestamp.com/icons_32/twitter.png]
> <http://twitter.com/AmpAgility>
>
>
>
>
>
> *From:* Ben Mattlin [mailto:bmatt...@earthlink.net
> <bmatt...@earthlink.net>]
> *Sent:* Thursday, May 18, 2017 4:04 PM
> *To:* quad-list@eskimo.com
> *Subject:* [QUAD-L] Re: Pressure wound advice
>
>
>
> Thanks, everyone, for your comments and feedback.  It's interesting how
> different people have very different experiences.  I don't yet have the
> Wound VAC but should have it soon.  Oddly, sitting in my chair does not
> seem to be the cause of the pressure wound.  So maybe it's my bed.  I find
> it hard to breathe when I lie on my side very long, hope a different
> mattress will help.  Frustrating, not knowing the cause or the best
> solution.  But you all give me hope that there WILL BE a solution,
> eventually.  Peace!
>
>


-- 
"Petting, scratching and cuddling a dog could be soothing to the mind and
heart and deep meditation and almost as good for the soul as prayer." ~Dean
Koontz

Re: [QUAD-L] Re: Pressure wound advice

[Lori Michaelson]

I have had 2 Stage III wounds and, unfortunately, it started out as
pressure but was exacerbated by the laziness of the health care
professionals involved. I.e. not getting a script off fast enough for a new
wheelchair cushion in 2009 and a home health agency nurse infecting that
wound which made it go out of control and therefore took a long long long
time healing.

Anyway, in 2004 I had one on my left ischial tuberocity (but bone) and I
was put on the KCI Wound Vac. We never knew what caused that wound but it
wasn't pressure. The Wound Vac cut my wound in the half over night (pretty
much literally) and then it healed rather quickly (albeit six months). My
only insurance was Medicare and Medicare would only pay for the wound vac
for one month. The rest of the time I had to stay off of it and began
drinking protein drinks. HOWEVER, thanks to my husband's medical knowledge
he would not let me drink one of those big protein jars or cans every
single day. I asked him why and he said "It will ruin your kidneys." Not in
those exact words but pretty much.

I have always used a rotating air mattress and, because of caregiving, have
had to be in a hospital bed. Well, not the entire time because other times
I have slept on a waffle air mattress or a cushion/gel mattress. But,
especially with my last Stage III wound that began in 2009 and having to
spend a lot of time in one position... I have been on the rotating air
mattress all the time.

I agree with all the advice given as well. When I did not want to stay off
the "small" wound that started in 2009 I got up 5 hours every day but, in
hindsight, that was stupid and it cost me more than words can say. In other
words, Kay described wounds very well. Prior to 2010 I never knew what
"shearing" was and ever since getting that wound and having it turn into a
Stage III wound... I soon learned that every bump I go over with my
wheelchair or in my van... the bone underneath wants to push through the
compromised skin so we have to stay on top of it all the time or it will
break open again and again and again which it has... even with protective
practices from my wound care doctor. If the bone wants to break through
from going over an unexpected good bump... it will.

Get on top of it ASAP and then stay off of it. It's a real pain in the ass
(pardon the pun) but you have to do what you have to do. Having a Stage IV
makes things even more vulnerable.

All my best, ~Lori

On Thu, May 18, 2017 at 4:13 PM, Kay at Amplified Agility <
k...@amplifiedagility.com> wrote:

> Hi Ben –
>
>
>
> I have seen the replies and just want to chime in with a “remember that
> wounds are an inside out and outside in” issue…meaning gut health, presence
> or not of “opportunistic critters” in the gut, nutritional status etc. are
> really important.  Also, when you have a wound as you are describing you
> need considerably more protein and other micronutrients to facilitate
> healing as well….I hope you have a knowledgeable nutritionist on your team.
>
>
>
> We deal with this a lot…
>
>
>
>
>
>
>
> [image: photo]
>
> *Kay Lathrop*
> Program Director, Amplified Agility, LLC
>
> 1-619-501-3752 | www.amplifiedagility.com |
> 4275 Executive Square, Suite 200 La Jolla, CA 92037
>
> [image:
> https://s3.amazonaws.com/images.wisestamp.com/icons_32/facebook.png]
> <http://www.facebook.com/kay.lathrop.14> [image:
> https://s3.amazonaws.com/images.wisestamp.com/icons_32/linkedin.png]
> <http://www.linkedin.com/in/kaylathrop/> [image:
> https://s3.amazonaws.com/images.wisestamp.com/icons_32/twitter.png]
> <http://twitter.com/AmpAgility>
>
>
>
>
>
> *From:* Ben Mattlin [mailto:bmatt...@earthlink.net]
> *Sent:* Thursday, May 18, 2017 4:04 PM
> *To:* quad-list@eskimo.com
> *Subject:* [QUAD-L] Re: Pressure wound advice
>
>
>
> Thanks, everyone, for your comments and feedback.  It's interesting how
> different people have very different experiences.  I don't yet have the
> Wound VAC but should have it soon.  Oddly, sitting in my chair does not
> seem to be the cause of the pressure wound.  So maybe it's my bed.  I find
> it hard to breathe when I lie on my side very long, hope a different
> mattress will help.  Frustrating, not knowing the cause or the best
> solution.  But you all give me hope that there WILL BE a solution,
> eventually.  Peace!
>



-- 
"Petting, scratching and cuddling a dog could be soothing to the mind and
heart and deep meditation and almost as good for the soul as prayer." ~Dean
Koontz

Fwd: [QUAD-L] Re: Pressure wound advice

[Larry Willis]

Pressure sores on my butt have been an issue for years. I have used the wound 
VAC more than once. The most difficult part for me was maintaining a tight 
seal. The contours of the butt and the tailbone are not conducive to a tight 
seal. The wound vac is very effective, though. So is good nutrition and heavy 
doses of protein as someone has already said. God bless and good luck.

Sent from my iPad

Begin forwarded message:

> Resent-From: quad-list@eskimo.com
> From: "Kay at Amplified Agility" <k...@amplifiedagility.com>
> Date: May 18, 2017 at 7:13:00 PM EDT
> To: "'Ben Mattlin'" <bmatt...@earthlink.net>, <quad-list@eskimo.com>
> Subject: RE: [QUAD-L] Re: Pressure wound advice
> 
> Hi Ben –
>  
> I have seen the replies and just want to chime in with a “remember that 
> wounds are an inside out and outside in” issue…meaning gut health, presence 
> or not of “opportunistic critters” in the gut, nutritional status etc. are 
> really important.  Also, when you have a wound as you are describing you need 
> considerably more protein and other micronutrients to facilitate healing as 
> well….I hope you have a knowledgeable nutritionist on your team.
>  
> We deal with this a lot…
>  
>  
>  
> 
> Kay Lathrop
> Program Director, Amplified Agility, LLC
> 1-619-501-3752 | www.amplifiedagility.com |
> 4275 Executive Square, Suite 200 La Jolla, CA 92037 
>   
>  
>  
> From: Ben Mattlin [mailto:bmatt...@earthlink.net] 
> Sent: Thursday, May 18, 2017 4:04 PM
> To: quad-list@eskimo.com
> Subject: [QUAD-L] Re: Pressure wound advice
>  
> Thanks, everyone, for your comments and feedback.  It's interesting how 
> different people have very different experiences.  I don't yet have the Wound 
> VAC but should have it soon.  Oddly, sitting in my chair does not seem to be 
> the cause of the pressure wound.  So maybe it's my bed.  I find it hard to 
> breathe when I lie on my side very long, hope a different mattress will help. 
>  Frustrating, not knowing the cause or the best solution.  But you all give 
> me hope that there WILL BE a solution, eventually.  Peace!

RE: [QUAD-L] Re: Pressure wound advice

[Kay at Amplified Agility]

Hi Ben – 

 

I have seen the replies and just want to chime in with a “remember that wounds 
are an inside out and outside in” issue…meaning gut health, presence or not of 
“opportunistic critters” in the gut, nutritional status etc. are really 
important.  Also, when you have a wound as you are describing you need 
considerably more protein and other micronutrients to facilitate healing as 
well….I hope you have a knowledgeable nutritionist on your team.

 

We deal with this a lot…

 

 

 


photo


Kay Lathrop
Program Director, Amplified Agility, LLC 


  1-619-501-3752 |  <http://www.amplifiedagility.com> 
www.amplifiedagility.com |
4275 Executive Square, Suite 200 La Jolla, CA 92037 


 <http://www.facebook.com/kay.lathrop.14> 
https://s3.amazonaws.com/images.wisestamp.com/icons_32/facebook.png  
<http://www.linkedin.com/in/kaylathrop/> 
https://s3.amazonaws.com/images.wisestamp.com/icons_32/linkedin.png  
<http://twitter.com/AmpAgility> 
https://s3.amazonaws.com/images.wisestamp.com/icons_32/twitter.png

 

 

From: Ben Mattlin [mailto:bmatt...@earthlink.net] 
Sent: Thursday, May 18, 2017 4:04 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] Re: Pressure wound advice

 

Thanks, everyone, for your comments and feedback.  It's interesting how 
different people have very different experiences.  I don't yet have the Wound 
VAC but should have it soon.  Oddly, sitting in my chair does not seem to be 
the cause of the pressure wound.  So maybe it's my bed.  I find it hard to 
breathe when I lie on my side very long, hope a different mattress will help.  
Frustrating, not knowing the cause or the best solution.  But you all give me 
hope that there WILL BE a solution, eventually.  Peace!

[QUAD-L] Re: Pressure wound advice

[Ben Mattlin]

Thanks, everyone, for your comments and feedback.  It's interesting how different people have very different experiences.  I don't yet have the Wound VAC but should have it soon.  Oddly, sitting in my chair does not seem to be the cause of the pressure wound.  So maybe it's my bed.  I find it hard to breathe when I lie on my side very long, hope a different mattress will help.  Frustrating, not knowing the cause or the best solution.  But you all give me hope that there WILL BE a solution, eventually.  Peace!

[QUAD-L] Re: [QUAD-L] would I be able to change the TV channels by voice, Using this?… I've been trying for years to find something to use with a smart TV

[Jim Lubin]

I have a roku. You can control roku channels (netflix, hulu, sling tv to
name a few). It can be controlled with a Windows 10 app or a smartphone
app. I think one model has a voice remote but requires you to press a
button to use voice commands.

On Mon, May 15, 2017 at 2:14 PM, DEBRA DEW  wrote:

> https://www.roku.com/how-it-works
> 
> Roku 
> www.roku.com
> Roku provides the simplest way to stream entertainment to your TV. On your
> terms. With more channels than any other streaming player.
>
>
>
>
>
>
>
>
> *Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot Currently: Quadrapeligic
> due to advanced MS and living in a nursing home Phone: 561-588-4333 SC
> student 20yrs  ROMANS 8:28*
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
>

[QUAD-L] Re: [QUAD-L] Re: [QUAD-L] Re: [QUAD-L] Alternating air pressure mattress not doing what is supposed to I believe… Need your opinions

[Fragile]

Debora, yes I can feel the movement, but it is very subtle. Prior to this
one, I tried a cheap mattress overlay where the feeling of movement was a
little more noticeable, unfortunately the overlays would only last for a
couple of weeks before developing a leak. I've got my microair set on low
air loss, don't feel anything because it doesn't move. I'm not sure if it
offers as much protection set this way as opposed to alternating pressure.

On Sun, Apr 9, 2017 at 9:59 PM, DEBRA DEW <n14...@hotmail.com> wrote:

> Can you guys actually feel the mattress shifting your weight a little bit?
> I've been told I should be able to feel some movement and I cannot and I
> feel everything too much normally. Thank you so much for talking to me
>
>
>
>
>
>
>
> *Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot Currently: Quadrapeligic
> due to advanced MS and living in a nursing home Phone: 561-588-4333
> <(561)%20588-4333> SC student 20yrs  ROMANS 8:28*
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
>
>
> --
> *From:* Fragile <swl...@gmail.com>
> *Sent:* Sunday, April 9, 2017 9:25 PM
> *To:* quad-list@eskimo.com
> *Cc:* quad-list@eskimo.com
> *Subject:* [QUAD-L] Re: [QUAD-L] Re: [QUAD-L] Alternating air pressure
> mattress not doing what is supposed to I believe… Need your opinions
>
> I also have a microair, model ma50. My only complaint is the noise of the
> pump every time it alternates the air. Most of the time I just leave it on
> low air loss mode so I only have to hear the noise about once an hour when
> it senses that the pressure is getting low. Would love to find one that's
> quite, wondering if the MA65 is just as loud?
>
> On Thu, Apr 6, 2017 at 8:58 PM, Jim Lubin <jlu...@eskimo.com> wrote:
>
>> After I had my 2nd pressure wound in 2013. The wound care doctor ordered
>> me this mattress that Medicare purchased. My wound healed in 2014, but it
>> has become difficult for my caregivers to transfer me to the wheelchair, so
>> I have decided to stay in bed. I have not had any pressure points on this
>> mattress the past 3 years being in bed 24/7.
>>
>>
>>
>> Invacare microAIR Alternating Pressure Low Air Loss Mattress
>> Energy-saving 50 LPM compressor offers four treatment cycles and pressure
>> monitoring.
>>
>> Product ID: MA65
>> HCPCS Code: E0277**
>> HMESA CODE: 10-10-09-00
>>
>> The microAIR mattress alternates in 5, 10, 15 or 20 minute cycles. Air
>> pressure is constantly monitored to maintain proper pressure redistribution
>> based on the weight of the user.
>>
>> Visual and audio alarms warn during low pressure or power outage
>> Mattress remains inflated during power outage when hose is connected
>> Rolls up and features an attached carry strap for easy transport and
>> storage
>> 10 Nylon, buckled straps firmly secure the mattress to the bed
>> Wireless auto-fowler prevents user from bottoming out when bed back is
>> raised
>>
>> Dimensions: 80" L x 36" W x 10" H
>> Compressor - 50 LPM
>> Product Weight Capacity: 350 lb.
>> Warranty: Limited Warranty - 1 Year - Mattress, Cover; 2 Year - Power
>> Unit
>>
>> On Thu, Apr 6, 2017 at 1:42 PM, DEBRA DEW <n14...@hotmail.com> wrote:
>>
>>> I've tried out this mattress for two days and I cannot tell the
>>> difference from my old one. I just went back to having the nurse put a bed
>>> pillow between my bottom and the mattress to try to keep me from touching
>>> the thing.
>>>
>>>
>>> I was assured it would be rotating my body a small amount to be able to
>>> relieve pressure areas on my bottom but I cannot feel anything being
>>> shifted and I have been told I could feel it moving me slightly if it was
>>> working properly.
>>>
>>>
>>> I am severely disappointed and need to figure out a solution posthaste
>>> before I get another bed sore.
>>>
>>> I would be able to purchase my own mattress if I only knew what would
>>> work. Below is the brand and model I am using currently.
>>>
>>>
>>> http://www.cascadehealthcaresolutions.com/PressureGuard-APM2
>>> -Deluxe-Control-Unit-p/5800.htm
>>>
>>> <http://www.cascadehealthcaresolutions.com/PressureGuard-APM2-Deluxe-Control-Unit-p/5800.htm>
>>> PressureGuard APM2 Deluxe Control Unit by Span America
>>> <http://www.cascadehealthcaresolutions.com/PressureGuard-APM2-Deluxe-Control-Unit-p/5800.htm>
>>> www.cascadehealthcaresolutions.com
>>> Need a Span America PressureGuard APM2 Deluxe Control Unit? Cascade
>>> Healthcare Solutions PressureGuard APM2 Deluxe Control Units - 5800
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>> *Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
>>> Formerly: Homeschooling mom of 9 and pvt. pilot Currently: Quadrapeligic
>>> due to advanced MS and living in a nursing home Phone: 561-588-4333
>>> <(561)%20588-4333> SC student 20yrs  ROMANS 8:28*
>>> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
>>>
>>
>>
>

[QUAD-L] Re: [QUAD-L] Re: [QUAD-L] Alternating air pressure mattress not doing what is supposed to I believe… Need your opinions

[Fragile]

I also have a microair, model ma50. My only complaint is the noise of the
pump every time it alternates the air. Most of the time I just leave it on
low air loss mode so I only have to hear the noise about once an hour when
it senses that the pressure is getting low. Would love to find one that's
quite, wondering if the MA65 is just as loud?

On Thu, Apr 6, 2017 at 8:58 PM, Jim Lubin  wrote:

> After I had my 2nd pressure wound in 2013. The wound care doctor ordered
> me this mattress that Medicare purchased. My wound healed in 2014, but it
> has become difficult for my caregivers to transfer me to the wheelchair, so
> I have decided to stay in bed. I have not had any pressure points on this
> mattress the past 3 years being in bed 24/7.
>
>
>
> Invacare microAIR Alternating Pressure Low Air Loss Mattress
> Energy-saving 50 LPM compressor offers four treatment cycles and pressure
> monitoring.
>
> Product ID: MA65
> HCPCS Code: E0277**
> HMESA CODE: 10-10-09-00
>
> The microAIR mattress alternates in 5, 10, 15 or 20 minute cycles. Air
> pressure is constantly monitored to maintain proper pressure redistribution
> based on the weight of the user.
>
> Visual and audio alarms warn during low pressure or power outage
> Mattress remains inflated during power outage when hose is connected
> Rolls up and features an attached carry strap for easy transport and
> storage
> 10 Nylon, buckled straps firmly secure the mattress to the bed
> Wireless auto-fowler prevents user from bottoming out when bed back is
> raised
>
> Dimensions: 80" L x 36" W x 10" H
> Compressor - 50 LPM
> Product Weight Capacity: 350 lb.
> Warranty: Limited Warranty - 1 Year - Mattress, Cover; 2 Year - Power Unit
>
> On Thu, Apr 6, 2017 at 1:42 PM, DEBRA DEW  wrote:
>
>> I've tried out this mattress for two days and I cannot tell the
>> difference from my old one. I just went back to having the nurse put a bed
>> pillow between my bottom and the mattress to try to keep me from touching
>> the thing.
>>
>>
>> I was assured it would be rotating my body a small amount to be able to
>> relieve pressure areas on my bottom but I cannot feel anything being
>> shifted and I have been told I could feel it moving me slightly if it was
>> working properly.
>>
>>
>> I am severely disappointed and need to figure out a solution posthaste
>> before I get another bed sore.
>>
>> I would be able to purchase my own mattress if I only knew what would
>> work. Below is the brand and model I am using currently.
>>
>>
>> http://www.cascadehealthcaresolutions.com/PressureGuard-
>> APM2-Deluxe-Control-Unit-p/5800.htm
>>
>> 
>> PressureGuard APM2 Deluxe Control Unit by Span America
>> 
>> www.cascadehealthcaresolutions.com
>> Need a Span America PressureGuard APM2 Deluxe Control Unit? Cascade
>> Healthcare Solutions PressureGuard APM2 Deluxe Control Units - 5800
>>
>>
>>
>>
>>
>>
>>
>>
>>
>> *Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
>> Formerly: Homeschooling mom of 9 and pvt. pilot Currently: Quadrapeligic
>> due to advanced MS and living in a nursing home Phone: 561-588-4333
>> <(561)%20588-4333> SC student 20yrs  ROMANS 8:28*
>> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
>>
>
>

Re: [QUAD-L] RE: [QUAD-L] Alternating air pressure mattress not doing what is supposed to I believe. Need your opinions

[DAVID LEWIS]

I have one on a rental base's. They gave me one because a had a sore on my but. 
Its all better now.You have to see a wound Dr. in order to qualify.  

On Thursday, April 6, 2017 5:30 PM, Carrie Pinter  
wrote:
 

 #yiv1273942919 #yiv1273942919 -- _filtered #yiv1273942919 {panose-1:2 4 5 3 5 
4 6 3 2 4;} _filtered #yiv1273942919 {font-family:Calibri;panose-1:2 15 5 2 2 2 
4 3 2 4;} _filtered #yiv1273942919 {panose-1:2 11 5 2 4 2 4 2 2 3;} _filtered 
#yiv1273942919 {panose-1:2 11 5 2 4 2 4 2 2 3;}#yiv1273942919 #yiv1273942919 
p.yiv1273942919MsoNormal, #yiv1273942919 li.yiv1273942919MsoNormal, 
#yiv1273942919 div.yiv1273942919MsoNormal 
{margin:0in;margin-bottom:.0001pt;font-size:12.0pt;}#yiv1273942919 a:link, 
#yiv1273942919 span.yiv1273942919MsoHyperlink 
{color:blue;text-decoration:underline;}#yiv1273942919 a:visited, #yiv1273942919 
span.yiv1273942919MsoHyperlinkFollowed 
{color:purple;text-decoration:underline;}#yiv1273942919 
p.yiv1273942919msonormal0, #yiv1273942919 li.yiv1273942919msonormal0, 
#yiv1273942919 div.yiv1273942919msonormal0 
{margin:0in;margin-bottom:.0001pt;font-size:12.0pt;}#yiv1273942919 
span.yiv1273942919EmailStyle21 {color:windowtext;}#yiv1273942919 
.yiv1273942919MsoChpDefault {font-size:10.0pt;} _filtered #yiv1273942919 
{margin:1.0in 1.0in 1.0in 1.0in;}#yiv1273942919 div.yiv1273942919WordSection1 
{}#yiv1273942919 Debra,Maybe something to 
consider:http://www.rehabmart.com/product/prodigy-mattress-overlay-by-roho-60.html
 Look closely at Buying Options section—the whole mattress is $1500 at least.  
http://www.rehabmart.com/product/roho-dry-flotation-mattress-overlay-23403.html 
 If you’ve had serious sores, you’ve probably seen and/or used any of these, 
but if not, it’s worth a look. I didn’t know these options existed until 
recently.http://www.rehabmart.com/product/roho-dry-flotation-mattress-overlay-23403.html
  I feel your pain. Good luck!    From: DEBRA DEW [mailto:n14...@hotmail.com] 
Sent: Thursday, April 6, 2017 3:43 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] Alternating air pressure mattress not doing what is supposed 
to I believe… Need your opinions  I've tried out this mattress for two days and 
I cannot tell the difference from my old one. I just went back to having the 
nurse put a bed pillow between my bottom and the mattress to try to keep me 
from touching the thing.  I was assured it would be rotating my body a small 
amount to be able to relieve pressure areas on my bottom but I cannot feel 
anything being shifted and I have been told I could feel it moving me slightly 
if it was working properly.  I am severely disappointed and need to figure out 
a solution posthaste before I get another bed sore.I would be able to purchase 
my own mattress if I only knew what would work. Below is the brand and model I 
am using currently.  
http://www.cascadehealthcaresolutions.com/PressureGuard-APM2-Deluxe-Control-Unit-p/5800.htm
|  | PressureGuard APM2 Deluxe Control Unit by Span 
Americawww.cascadehealthcaresolutions.comNeed a Span America PressureGuard APM2 
Deluxe Control Unit? Cascade Healthcare Solutions PressureGuard APM2 Deluxe 
Control Units - 5800 |

      Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
Formerly: Homeschooling mom of 9 and pvt. pilot
Currently: Quadrapeligic due to advanced MS and living in a nursing home
Phone: 561-588-4333
SC student 20yrs  
ROMANS 8:28 B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH 

   

[QUAD-L] Re: [QUAD-L] Alternating air pressure mattress not doing what is supposed to I believe… Need your opinions

[Jim Lubin]

After I had my 2nd pressure wound in 2013. The wound care doctor ordered me
this mattress that Medicare purchased. My wound healed in 2014, but it has
become difficult for my caregivers to transfer me to the wheelchair, so I
have decided to stay in bed. I have not had any pressure points on this
mattress the past 3 years being in bed 24/7.



Invacare microAIR Alternating Pressure Low Air Loss Mattress
Energy-saving 50 LPM compressor offers four treatment cycles and pressure
monitoring.

Product ID: MA65
HCPCS Code: E0277**
HMESA CODE: 10-10-09-00

The microAIR mattress alternates in 5, 10, 15 or 20 minute cycles. Air
pressure is constantly monitored to maintain proper pressure redistribution
based on the weight of the user.

Visual and audio alarms warn during low pressure or power outage
Mattress remains inflated during power outage when hose is connected
Rolls up and features an attached carry strap for easy transport and storage
10 Nylon, buckled straps firmly secure the mattress to the bed
Wireless auto-fowler prevents user from bottoming out when bed back is
raised

Dimensions: 80" L x 36" W x 10" H
Compressor - 50 LPM
Product Weight Capacity: 350 lb.
Warranty: Limited Warranty - 1 Year - Mattress, Cover; 2 Year - Power Unit

On Thu, Apr 6, 2017 at 1:42 PM, DEBRA DEW  wrote:

> I've tried out this mattress for two days and I cannot tell the difference
> from my old one. I just went back to having the nurse put a bed pillow
> between my bottom and the mattress to try to keep me from touching the
> thing.
>
>
> I was assured it would be rotating my body a small amount to be able to
> relieve pressure areas on my bottom but I cannot feel anything being
> shifted and I have been told I could feel it moving me slightly if it was
> working properly.
>
>
> I am severely disappointed and need to figure out a solution posthaste
> before I get another bed sore.
>
> I would be able to purchase my own mattress if I only knew what would
> work. Below is the brand and model I am using currently.
>
>
> http://www.cascadehealthcaresolutions.com/PressureGuard-APM2-Deluxe-
> Control-Unit-p/5800.htm
>
> 
> PressureGuard APM2 Deluxe Control Unit by Span America
> 
> www.cascadehealthcaresolutions.com
> Need a Span America PressureGuard APM2 Deluxe Control Unit? Cascade
> Healthcare Solutions PressureGuard APM2 Deluxe Control Units - 5800
>
>
>
>
>
>
>
>
>
> *Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
> Formerly: Homeschooling mom of 9 and pvt. pilot Currently: Quadrapeligic
> due to advanced MS and living in a nursing home Phone: 561-588-4333
> <(561)%20588-4333> SC student 20yrs  ROMANS 8:28*
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
>

RE: [QUAD-L] RE: [QUAD-L] Alternating air pressure mattress not doing what is supposed to I believe. Need your opinions

[Gail Overton]

OK it helps to include the link...
http://www.ebay.com/itm/Dive-Medical-Low-Air-Loss-Alternating-Pressure-Hospital-Mattress-/131879741730?hash=item1eb4a52922:g:nWQAAOSwaB5Xirec


From: Gail Overton
Sent: Thursday, April 06, 2017 4:24 PM
To: 'Joan Anglin'; 'DEBRA DEW'; quad-list@eskimo.com
Subject: RE: [QUAD-L] RE: [QUAD-L] Alternating air pressure mattress not doing 
what is supposed to I believe. Need your opinions

This is what my husband uses and he's never had any bedsores.

From: Joan Anglin [mailto:poaj...@sbcglobal.net]
Sent: Thursday, April 06, 2017 3:15 PM
To: 'DEBRA DEW'; quad-list@eskimo.com<mailto:quad-list@eskimo.com>
Subject: [QUAD-L] RE: [QUAD-L] Alternating air pressure mattress not doing what 
is supposed to I believe. Need your opinions

Looks good.  Do you have it in lateral rotation, alternating pressure therapy, 
or float mode?
If it still isn't working contact the company.  Good luck.


From: DEBRA DEW [mailto:n14...@hotmail.com]
Sent: 06 April, 2017 1:43 PM
To: quad-list@eskimo.com<mailto:quad-list@eskimo.com>
Subject: [QUAD-L] Alternating air pressure mattress not doing what is supposed 
to I believe... Need your opinions


I've tried out this mattress for two days and I cannot tell the difference from 
my old one. I just went back to having the nurse put a bed pillow between my 
bottom and the mattress to try to keep me from touching the thing



I was assured it would be rotating my body a small amount to be able to relieve 
pressure areas on my bottom but I cannot feel anything being shifted and I have 
been told I could feel it moving me slightly if it was working properly.



I am severely disappointed and need to figure out a solution posthaste before I 
get another bed sore.

I would be able to purchase my own mattress if I only knew what would work. 
Below is the brand and model I am using currently.



http://www.cascadehealthcaresolutions.com/PressureGuard-APM2-Deluxe-Control-Unit-p/5800.htm<https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.cascadehealthcaresolutions.com%2FPressureGuard-APM2-Deluxe-Control-Unit-p%2F5800.htm=02%7C01%7CGailO%40Pennwell.com%7C2f13eb625e9c47f378cd08d47d3a5a58%7C5bbf75da8a3f493c8343e6cd0cb0e070%7C0%7C0%7C636271136964365497=fw9eg8SyLfSVkaKFfCdrL1FTtJGoiS8w%2FZLZMkssXNk%3D=0>
[https://www.cascadehealthcaresolutions.com/v/vspfiles/photos/5800-2T.jpg]<https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.cascadehealthcaresolutions.com%2FPressureGuard-APM2-Deluxe-Control-Unit-p%2F5800htm=02%7C01%7CGailO%40Pennwell.com%7C2f13eb625e9c47f378cd08d47d3a5a58%7C5bbf75da8a3f493c8343e6cd0cb0e070%7C0%7C0%7C636271136964365497=GwE14c8nC%2FgCTps8mxgukWg4deR4gAfF5sGmKBztf2A%3D=0>

PressureGuard APM2 Deluxe Control Unit by Span 
America<https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.cascadehealthcaresolutions.com%2FPressureGuard-APM2-Deluxe-Control-Unit-p%2F5800.htm=02%7C01%7CGailO%40Pennwell.com%7C2f13eb625e9c47f378cd08d47d3a5a58%7C5bbf75da8a3f493c8343e6cd0cb0e070%7C0%7C0%7C636271136964365497=fw9eg8SyLfSVkaKFfCdrL1FTtJGoiS8w%2FZLZMkssXNk%3D=0>
www.cascadehealthcaresolutions.com<https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.cascadehealthcaresolutions.com=02%7C01%7CGailO%40Pennwell.com%7C2f13eb625e9c47f378cd08d47d3a5a58%7C5bbf75da8a3f493c8343e6cd0cb0e070%7C0%7C0%7C636271136964365497=XATwfxqHycYTeTazyDBaBSXLEPfWVxH0PlJy5rBl5xk%3D=0>
Need a Span America PressureGuard APM2 Deluxe Control Unit? Cascade Healthcare 
Solutions PressureGuard APM2 Deluxe Control Units - 5800






Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
Formerly: Homeschooling mom of 9 and pvt. pilot
Currently: Quadrapeligic due to advanced MS and living in a nursing home
Phone: 561-588-4333
SC student 20yrs
ROMANS 8:28
B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH

RE: [QUAD-L] RE: [QUAD-L] Alternating air pressure mattress not doing what is supposed to I believe. Need your opinions

[Gail Overton]

This is what my husband uses and he's never had any bedsores.

From: Joan Anglin [mailto:poaj...@sbcglobal.net]
Sent: Thursday, April 06, 2017 3:15 PM
To: 'DEBRA DEW'; quad-list@eskimo.com
Subject: [QUAD-L] RE: [QUAD-L] Alternating air pressure mattress not doing what 
is supposed to I believe. Need your opinions

Looks good.  Do you have it in lateral rotation, alternating pressure therapy, 
or float mode?
If it still isn't working contact the company.  Good luck.


From: DEBRA DEW [mailto:n14...@hotmail.com]
Sent: 06 April, 2017 1:43 PM
To: quad-list@eskimo.com<mailto:quad-list@eskimo.com>
Subject: [QUAD-L] Alternating air pressure mattress not doing what is supposed 
to I believe... Need your opinions


I've tried out this mattress for two days and I cannot tell the difference from 
my old one. I just went back to having the nurse put a bed pillow between my 
bottom and the mattress to try to keep me from touching the thing



I was assured it would be rotating my body a small amount to be able to relieve 
pressure areas on my bottom but I cannot feel anything being shifted and I have 
been told I could feel it moving me slightly if it was working properly.



I am severely disappointed and need to figure out a solution posthaste before I 
get another bed sore.

I would be able to purchase my own mattress if I only knew what would work. 
Below is the brand and model I am using currently.



http://www.cascadehealthcaresolutions.com/PressureGuard-APM2-Deluxe-Control-Unit-p/5800.htm<https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.cascadehealthcaresolutions.com%2FPressureGuard-APM2-Deluxe-Control-Unit-p%2F5800.htm=02%7C01%7CGailO%40Pennwell.com%7C2f13eb625e9c47f378cd08d47d3a5a58%7C5bbf75da8a3f493c8343e6cd0cb0e070%7C0%7C0%7C636271136964365497=fw9eg8SyLfSVkaKFfCdrL1FTtJGoiS8w%2FZLZMkssXNk%3D=0>
[https://www.cascadehealthcaresolutions.com/v/vspfiles/photos/5800-2T.jpg]<https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.cascadehealthcaresolutions.com%2FPressureGuard-APM2-Deluxe-Control-Unit-p%2F5800htm=02%7C01%7CGailO%40Pennwell.com%7C2f13eb625e9c47f378cd08d47d3a5a58%7C5bbf75da8a3f493c8343e6cd0cb0e070%7C0%7C0%7C636271136964365497=GwE14c8nC%2FgCTps8mxgukWg4deR4gAfF5sGmKBztf2A%3D=0>

PressureGuard APM2 Deluxe Control Unit by Span 
America<https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.cascadehealthcaresolutions.com%2FPressureGuard-APM2-Deluxe-Control-Unit-p%2F5800.htm=02%7C01%7CGailO%40Pennwell.com%7C2f13eb625e9c47f378cd08d47d3a5a58%7C5bbf75da8a3f493c8343e6cd0cb0e070%7C0%7C0%7C636271136964365497=fw9eg8SyLfSVkaKFfCdrL1FTtJGoiS8w%2FZLZMkssXNk%3D=0>
www.cascadehealthcaresolutions.com<https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.cascadehealthcaresolutions.com=02%7C01%7CGailO%40Pennwell.com%7C2f13eb625e9c47f378cd08d47d3a5a58%7C5bbf75da8a3f493c8343e6cd0cb0e070%7C0%7C0%7C636271136964365497=XATwfxqHycYTeTazyDBaBSXLEPfWVxH0PlJy5rBl5xk%3D=0>
Need a Span America PressureGuard APM2 Deluxe Control Unit? Cascade Healthcare 
Solutions PressureGuard APM2 Deluxe Control Units - 5800






Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
Formerly: Homeschooling mom of 9 and pvt. pilot
Currently: Quadrapeligic due to advanced MS and living in a nursing home
Phone: 561-588-4333
SC student 20yrs
ROMANS 8:28
B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH

[QUAD-L] RE: [QUAD-L] Alternating air pressure mattress not doing what is supposed to I believe. Need your opinions

[Joan Anglin]

Looks good.  Do you have it in lateral rotation, alternating pressure
therapy, or float mode?

If it still isn't working contact the company.  Good luck.

 

 

From: DEBRA DEW [mailto:n14...@hotmail.com] 
Sent: 06 April, 2017 1:43 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] Alternating air pressure mattress not doing what is
supposed to I believe. Need your opinions

 

I've tried out this mattress for two days and I cannot tell the difference
from my old one. I just went back to having the nurse put a bed pillow
between my bottom and the mattress to try to keep me from touching the thing

 

I was assured it would be rotating my body a small amount to be able to
relieve pressure areas on my bottom but I cannot feel anything being shifted
and I have been told I could feel it moving me slightly if it was working
properly.

 

I am severely disappointed and need to figure out a solution posthaste
before I get another bed sore.

I would be able to purchase my own mattress if I only knew what would work.
Below is the brand and model I am using currently.

 

http://www.cascadehealthcaresolutions.com/PressureGuard-APM2-Deluxe-Control-
Unit-p/5800.htm


 
 

 
 PressureGuard APM2 Deluxe Control Unit by Span America

www.cascadehealthcaresolutions.com
 

Need a Span America PressureGuard APM2 Deluxe Control Unit? Cascade
Healthcare Solutions PressureGuard APM2 Deluxe Control Units - 5800

 

 

 

Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
Formerly: Homeschooling mom of 9 and pvt. pilot
Currently: Quadrapeligic due to advanced MS and living in a nursing home
Phone: 561-588-4333
SC student 20yrs  
ROMANS 8:28 

B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH 

[QUAD-L] RE: [QUAD-L] Alternating air pressure mattress not doing what is supposed to I believe. Need your opinions

[Carrie Pinter]

Debra,

Maybe something to consider:

http://www.rehabmart.com/product/prodigy-mattress-overlay-by-roho-60.html
Look closely at Buying Options section-the whole mattress is $1500 at least.

 

http://www.rehabmart.com/product/roho-dry-flotation-mattress-overlay-23403.h
tml

 

If you've had serious sores, you've probably seen and/or used any of these,
but if not, it's worth a look. I didn't know these options existed until
recently.

http://www.rehabmart.com/product/roho-dry-flotation-mattress-overlay-23403.h
tml

 

I feel your pain. Good luck!

 

 

From: DEBRA DEW [mailto:n14...@hotmail.com] 
Sent: Thursday, April 6, 2017 3:43 PM
To: quad-list@eskimo.com
Subject: [QUAD-L] Alternating air pressure mattress not doing what is
supposed to I believe. Need your opinions

 

I've tried out this mattress for two days and I cannot tell the difference
from my old one. I just went back to having the nurse put a bed pillow
between my bottom and the mattress to try to keep me from touching the
thing.

 

I was assured it would be rotating my body a small amount to be able to
relieve pressure areas on my bottom but I cannot feel anything being shifted
and I have been told I could feel it moving me slightly if it was working
properly.

 

I am severely disappointed and need to figure out a solution posthaste
before I get another bed sore.

I would be able to purchase my own mattress if I only knew what would work.
Below is the brand and model I am using currently.

 

http://www.cascadehealthcaresolutions.com/PressureGuard-APM2-Deluxe-Control-
Unit-p/5800.htm


 
 

 
 PressureGuard APM2 Deluxe Control Unit by Span America

www.cascadehealthcaresolutions.com
 

Need a Span America PressureGuard APM2 Deluxe Control Unit? Cascade
Healthcare Solutions PressureGuard APM2 Deluxe Control Units - 5800

 

 

 

Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
Formerly: Homeschooling mom of 9 and pvt. pilot
Currently: Quadrapeligic due to advanced MS and living in a nursing home
Phone: 561-588-4333
SC student 20yrs  
ROMANS 8:28 

B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH