Re: [QUAD-L] 33 years

[Dana Wray]

Congratulations Jim,
I am so proud of everything you have done for the disability community.
You’re so special and a joy to know and learn from.
Always,
Dana Wray
On Tue, May 17, 2022 at 7:33 PM Danny Hearn  wrote:

> Congrats Jim. You have been an inspiration to many, including having
> this List and many Sites you have told us about through the years-God Bless
> You !   Dan H***  C-6  Quad, almost 25 years post.
>
> On Tuesday, May 17, 2022, 07:20:00 PM CDT, Jim Lubin 
> wrote:
>
>
> Today marks 33 years since my transverse myelitis onset. I woke up with a
> pain in my shoulder. Two hours later I could not remain able to stand and
> then stopped breathing. I have been paralyzed from the neck down and
> dependent on a ventilator to breathe to keep me alive ever since. I am
> otherwise in great health and not in pain, so life is good.
>

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] Covid and Vaccine

[Dana Wray]

That was a great article, I didn't get the doctors name, but he was
fabulous. Has anyone on the quad list had Covid and welcome to treatment to
think. How do they go about getting treatment at home and not go to the
hospital? I'm taking vitamin D3, vitamin C, zinc and I don't think my
vitamin C have bioflavonoids. Those are the best to take the article said.
I also take Vitamin E, vitamin B12 and a vitamin B complex, cranberry
capsules my zinc is a prescription dose. I need to get a list of what I
take and how much to compare with everyone else on the list. My problems
usually come from kidney stones, kidney infections and pneumonia. When I
get stones they will put urostomy tubes in my kidneys to drain. I had from
June-August until they get exploratory surgery to look for kidney stones.
They seem to have disappeared, the doctors could figure it out. My scan
showed lots of kidney stones. They kept me in the hospital for the
infection 10 days on a lot of IV. Antibiotics. Does anyone else battle
kidney stones. I have a son ileoconduit that causes stones. I got this is a
result of water cancer in 1986. Colon cancer in 2014, then I had to have my
ileoconduit replaced in 2014. Did you know they wear out. The stoma becomes
so small it will no longer drain urine from the kidneys.









































































Thank you for the great YouTube was such an accomplished physician and
researcher. I didn't catch his name. He would be a good one to follow. Did
anybody write his name? He might be on Twitter.

What vitamins do my fellow quads take. I need to make a list of the
milligrams I take. I know what I take I just don't know the exact
milligrams. That would be helpful if we compared notes.

Thank you so much for the information given to me by Eric Olson and Jim
Lubin. I am using Norco. I had trouble getting them started and . I am
waiting on my next shipment.. So they are behind still. I never knew would
be so hard finding a company that made suction catheters. I'd have the same
company for so many years before they got bought out. The company they were
sold to still keep sending emails asking me if I want to order, but they
will never answer the phone. I would complain about their customer service.
I don't know if it is the Medicare reimbursement or just lack of employees.
Our local Hy-Vee while staying open until midnight but now they're closing
at 11 PM. They have trouble getting personnel also.

This country is really a mess. All we can do is pray. I was listening to my
answer machine and I ran across the message from Lori Michelson. So sad to
hear her voice and realize that I'll never talk to her again until Heaven.
Dana C4-5, 47 years post,






















On Sun, Sep 12, 2021 at 8:41 PM Aaron Mann  wrote:

> Must Watch:
> https://www.youtube.com/watch?v=QAHi3lX3oGM_channel=AssociationofAmericanPhysiciansandSurgeons
>
> If you get a positive Covid test:
> https://aapsonline.org/covidpatientguide/
>
>
>
> Aaron Mann
>
>
> On Fri, Sep 3, 2021 at 7:25 PM  wrote:
>
>> my c/5 friend got moderna.phizer. littlet achy for 1 day.
>>
>> i got covid in april. 7 days in hospital.
>> this week, my grandkid got it. he has been around me for days. i'm not
>> having any symptoms except chest tightness. probably styress/heartburn.
>> his mom takes care of me. her nor 2 other kids got covid from sibling.
>> crazy how it effects people.
>>
>> i never got vaccine.
>>
>> On 9/3/21 5:12 PM, Randy Anderson wrote:
>>
>> Hello Nikki and all.
>> I had the Moderna first and second. I have a little fatigue the next day,
>> but other than that no problems. My wife and son went with the Johnson &
>> Johnson, and had fatigue the next day also.
>> Other than that, that's about it.
>> Take care, Randy Anderson C4/5
>>
>> On Fri, Sep 3, 2021 at 4:01 PM Nichole Rohling 
>> wrote:
>>
>>> Thank you Greg for your response
>>>
>>>
>>>
>>> Nicki
>>>
>>>
>>>
>>> *From:* Greg [mailto:g...@eskimo.com]
>>> *Sent:* Thursday, September 2, 2021 8:11 PM
>>> *To:* quad-list@eskimo.com
>>> *Subject:* Re: [QUAD-L] Covid and Vaccine
>>>
>>>
>>>
>>> i had the pfizer shots and had no side effects at all.  4 family members
>>> had no side effects either.
>>> going to get my update shot tommorow.
>>> greg
>>>
>>> On 8/31/2021 2:03 PM, Nichole Rohling wrote:
>>>
>>> Just curious if anyone has had Covid and how did you feel, symptoms, etc.
>>>
>>> If you got vaccine which did you get? Did you have a reaction?
>>>
>>>
>>>
>>> Nicki
>>>
>>> C5/6
>>>
>>>
>>>
>>
>>

Re: [QUAD-L] ARE QUADS IN CONSIDERD HIGH RISK FOR BOOSTER SHOT

[Dana Wray]

I got my flu shot today and they want to come back into weeks and give me
my Johnson’s and Johnson’s Booster. What does everybody think about the
booster? I hear so many conflicting stories I would send them to the
Quad-list but they are all on a website that you have to belong to.
On Mon, Oct 11, 2021 at 11:12 AM DAVID LEWIS  wrote:

> hi, i got my Phizer booster shot last week because Quads are at high risk
> because they dont have the stomach muscles to cough and get the phlem up.
> Be safe and get it.
> On Monday, October 11, 2021, 01:38:46 AM EDT, Dana Wray <
> daano...@gmail.com> wrote:
>
>
> I called my Johnson County health nurse and she's going to bring me a flu
> shot and she said the booster for the Johnsons and Johnsons would be out in
> a couple weeks. I don't know what I think about that. What does everybody
> think about the booster shot. I want to learn more information about the
> shot you could you live better towards before I take it. We are advised to
> take because of our age, our immune system and I am such high risk for
> kidney infections because of my ileoconduit. It is more open to bacteria.
>
> I wanted to share with you a new toothpaste that makes your teeth feel
> great. It is Crest gum and sensitivity all the protection it is the
> prohealth Crest. I have been using fluoride from my doctor for at least
> five years. My prescription ended because I have to start a new dentist
> this month. I am 68 and we usually get recession as we get older.
> Dana C4-5 complete, ileoconduit, tracheostomy
>
> I am fighting sores on my heel where there was skin graft that easily gets
> hit transferring into bed, and the area where your bottom and upper leg
> connect. A caregiver broke my hip decades ago and as my hip joint
> disintegrated, it makes me lean to the left. This causes pressure on the
> right side of my body at that area. I have severe altar process and wasn't
> able to get surgery on my foot after I got gangrene after a foot drop
> surgery, the fixed Savior was too tight. I lost all of the fat on my heal.
> After wound VAC for two months and a skin graft. It often gets a sore on
> the skin graft that is very difficult to heal. I'm using Venelux on each
> area, but it doesn't seem to be solving the problem. Does anybody else have
> any suggestions? There is no padding on my heel, just bowed in the skin
> graft. Thank you for any information you can provide..
>
>
>
> On Thu, Sep 30, 2021 at 11:13 PM Dana Wray  wrote:
>
> Thank you so much for that video, that is helpful to show caregivers. I
> have a trach so, I usually get suctioned. Dana
>
> On Thu, Sep 30, 2021 at 7:56 PM Greg  wrote:
>
> they gave me one.
> age 57
>
>
> greg
>
> On 9/21/2021 9:45 AM, DAVID LEWIS wrote:
>
> Im 63 year old Quad has trouble coughing. Do i need a booster?  and When?
>
>
>

Re: [QUAD-L] ARE QUADS IN CONSIDERD HIGH RISK FOR BOOSTER SHOT

[Dana Wray]

I called my Johnson County health nurse and she's going to bring me a flu
shot and she said the booster for the Johnsons and Johnsons would be out in
a couple weeks. I don't know what I think about that. What does everybody
think about the booster shot. I want to learn more information about the
shot you could you live better towards before I take it. We are advised to
take because of our age, our immune system and I am such high risk for
kidney infections because of my ileoconduit. It is more open to bacteria.

I wanted to share with you a new toothpaste that makes your teeth feel
great. It is Crest gum and sensitivity all the protection it is the
prohealth Crest. I have been using fluoride from my doctor for at least
five years. My prescription ended because I have to start a new dentist
this month. I am 68 and we usually get recession as we get older.
Dana C4-5 complete, ileoconduit, tracheostomy

I am fighting sores on my heel where there was skin graft that easily gets
hit transferring into bed, and the area where your bottom and upper leg
connect. A caregiver broke my hip decades ago and as my hip joint
disintegrated, it makes me lean to the left. This causes pressure on the
right side of my body at that area. I have severe altar process and wasn't
able to get surgery on my foot after I got gangrene after a foot drop
surgery, the fixed Savior was too tight. I lost all of the fat on my heal.
After wound VAC for two months and a skin graft. It often gets a sore on
the skin graft that is very difficult to heal. I'm using Venelux on each
area, but it doesn't seem to be solving the problem. Does anybody else have
any suggestions? There is no padding on my heel, just bowed in the skin
graft. Thank you for any information you can provide..



On Thu, Sep 30, 2021 at 11:13 PM Dana Wray  wrote:

> Thank you so much for that video, that is helpful to show caregivers. I
> have a trach so, I usually get suctioned. Dana
>
> On Thu, Sep 30, 2021 at 7:56 PM Greg  wrote:
>
>> they gave me one.
>> age 57
>>
>>
>> greg
>>
>> On 9/21/2021 9:45 AM, DAVID LEWIS wrote:
>>
>> Im 63 year old Quad has trouble coughing. Do i need a booster?  and When?
>>
>>
>>

[QUAD-L] Fwd: Month of Action: Caregiving, SSI, and Accessible Transportation

[Dana Wray]

Sent from my iPad

Begin forwarded message:

> From: Steve Lieberman 
> Date: September 30, 2021 at 10:44:04 AM CDT
> To: Dana Wray 
> Subject: Month of Action: Caregiving, SSI, and Accessible Transportation
> 

[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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Re: [QUAD-L] ARE QUADS IN CONSIDERD HIGH RISK FOR BOOSTER SHOT

[Dana Wray]

Thank you so much for that video, that is helpful to show caregivers. I
have a trach so, I usually get suctioned. Dana

On Thu, Sep 30, 2021 at 7:56 PM Greg  wrote:

> they gave me one.
> age 57
>
>
> greg
>
> On 9/21/2021 9:45 AM, DAVID LEWIS wrote:
>
> Im 63 year old Quad has trouble coughing. Do i need a booster?  and When?
>
>
>

Re: [QUAD-L] wondering about people

[Dana Wray]

Miss them both.I hope you can drive again.My love and prayers.Dana

Sent from my iPad

> On Sep 7, 2021, at 10:02 AM, Shirley Bell  wrote:
> 
> 
> Thanks Nicki, so sad indeed about Lori. We never knew how Bobbie Humphies 
> died either. Miss them  both. Also wonder how Joan and Larry are?? I am good 
> here in RI trying to find a way to drive again, hard on many levels. Shirley

Re: [QUAD-L] Lori Michaelson

[Dana Wray]

Lori and I emailed and talked on the phone. She had written me in June and
I saw the email after I got out of the hospital and then I had to go back
to the hospital for exploratory surgery. I wrote her but didn't hear back
from her. I should've tried calling her, because in her letter she didn't
know where she was going and she was trying to find a home for her
beautiful dog. She had medical issues from the nurse that was improper and
not sterile,sringmylia that cause pain, like Julie said being uprooted from
her sisters home. I don't think they understood or liked her having
caregivers coming in and out of the house. It's what a lot of us face when
we don't have enough care. She receives Social Security from her husband
and her own but it wasn't enough to pay caregivers, her apartment and
living expenses. She wasn't able to get any help from the state. She loved
her scrapbooking and her dog that she walked every day. She had a great
caregiver and after she left she got a new one, but they were leaving. We
were trying to find out everywhere we could post an ad. It is often so
difficult to find specially if you have limited funds. This is what happens
to a lot of quadriplegics and why they get sores and die. I wish they would
do a study on this but with the current administration, I don't think they
would do anything to help situations like this. I don't know what kind of
care is available in the state of Arizona. I don't know if there's anybody
else on the quad list that lives in Arizona She had a wonderful niece that
would spend time with her, but she lived out-of-state, maybe Texas. I'd
have to look up in my old letters about specifics. I loved her and enjoyed
talking on the phone and emailing her. I will truly miss her. I lived in a
nursing home for three years and it is a long story. All home facilities
don't know how to take care of quadriplegics and don't have the staff. It's
like a death sentence to go to a nursing home after living independently
all your life and having a dog that you dearly loved. I pray that she died
in her sleep and didn't have to suffer. I don't know that we will find out
what the cause of death was. We have lost quite a few persons that I miss.
it seems. I'm not familiar with you Julie. I'm on Facebook. I've always
enjoyed the quad list and learning about other persons facing the same
problems and learning from them. Dana, 47 years post, C4-5, tracheostomy,
ileoconduit. Those of the hospital for 10 days for two kidney infections,
sepsis and ammonia in June. Several weeks after that I had exploratory
surgery to find the kidney stones. My urologist couldn't find kidney
stones. . I have tubes hooked up to my kidneys that are turned off right
now. My kidneys were not draining properly. Has anyone else ever had this
problem. I'm assuming I will have to go back to the kidney doctor. My
urologist could only use the camera in the ileoconduit and ureters not the
kidneys. Three weeks ago I ran out of the suction catheters. The company
they switched me to would not answer the phone. Thanks to Jim Lubin, he
gave me the name of the company he uses, and I hope they will be shipping
to me soon, before I run out of the ones I had to buy privately. I
contacted for five different companies and none of them answered me. I
don't have very many left.

We can write on Lori's Facebook page. Lori will be missed, she was such a
good communicator about her life. Let's make a list of those we have lost
on the quad list. We can remember them again.

On Sun, Sep 5, 2021 at 1:13 AM Gail Holmes 
wrote:

> If I recall correctly a few years ago Lori was uprooted from the northeast
> where she lived w her sister and brother-in- law after the unexpected death
> of her husband who was her caregiver.
>
> I believe she said her parents were deceased and she had no choice but to
> go it alone and decided on Phoenix area for the climate I think.
>
> I know she had medical complications with her bladder that she said was
> from a nurse’s poor handling of the inflated bulb of her then foley
> catheter.
>
> This resulted in trauma to her urethra that caused problems and
> hospitalizations and ultimately she got a  Suprapubic catheter I believe.
>
> Please someone correct me if I’m getting it wrong and fill in what details
> I’m missing.
>
> The last I remember was she was in urgent need of a live in caregiver
> replacement.
>
> I’m so sorry to hear of her passing and also wonder what happened and what
> became of her beloved dog.
>
>
>
>
>
>
>
>
>
> Sent from my iPhone
>
> On Sep 4, 2021, at 5:28 PM, Jeffrey Gaede  wrote:
>
> 
> Wow! Thank you!
>
> On Saturday, September 4, 2021, 03:00:52 PM PDT, Julie 
> wrote:
>
>
> https://www.tributearchive.com/obituaries/22137694/lori-sue-michaelson
>
>
>
>
>
> *From:* Jeffrey Gaede 
> *Sent:* Saturday, September 4, 2021 3:46 PM
> *To:* 'Michael Galvin' ; quad-list@eskimo.com; 'Eric
> Olson' ; Nichole Rohling 
> *Subject:* Re: [QUAD-L] Lori Michaelson
>
>
>
> Not only what 

[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.

Re: [QUAD-L] Bed/Mattress Question

[Dana Wray]

This is the bed I have, But it doesn’t have enough airflow and I think I
think too far to the bottom. Does anyone have that problem with their low
air loss mattresses. The previous one I had was much better but They didn’t
carry it anymore at the store I had purchased it. I had it for about 10
years and it finally quit blowing up. It was a stage 4 . This is only a
one, two and three. No wonder It was better. It had a lot of airflow above
the cells, but not this one. Does anyone else have one that has a lot of
airflow above the cells. Does anyone have one, that does. I would
appreciate any feedback. They only have one year warranty, which is crazy
unfair, when they cost so much.
Dana C4-5 complete, trach button ,ileo-conduit bladder cancer, colon
cancer, Osteoporosis, it will be 47 years post in July.
I keep pictures of all my different wounds,2 result of wound doctor and
surgeon.A number of surgeries
Love and prayers for all my Quadriplegic friends. I’m so glad we can share
our stories. Thank you for all the Sharing we have done all these years. It
is priceless. I’m on Facebook Dana Wray.

https://www.phc-online.com/DynaFlow_Low_Air_Loss_Mattress_p/phr-dyna.htm



On Fri, Apr 9, 2021 at 11:56 PM Jim Lubin  wrote:

> I had two pressure sores 6 years ago and the wound care doctor prescribed
> an invacare MA65. I just moved and wanted to replace it. I just got the
> invacare MA600 and love it.
>
> On Fri, Mar 19, 2021 at 11:28 AM Nancy  wrote:
>
>> What bed/mattress do you use to prevent skin breakdowns? I'm looking for
>> info and recommendations - comfort, durability, reliability...
>>
>> I currently use a Drive Medical Lateral Rotation Mattress with Low Air Loss.
>> I don't use the turning feature because it never returned me to the correct
>> position. I got this bed in 2015 and I'm now having a lot of problems
>> wit it. I can no longer get comfortable, it bulges and makes hard lumps under
>> my injury site, bones and muscles. I can't sleep through the night anymore
>> and I'm getting headaches frequently. I hurt all the time. On the plus
>> side, it continues to prevent pressure sores. I've tried to get
>> insurance (MLTC Medicare/Medicaid) to cover a new mattress but have been
>> denied. After nearly 53 years, I have two chronic sores so I spend most
>> of my time in bed. This is killing me both physically and mentally! Any
>> suggestions will be appreciated.
>> Nan
>>
>

Re: [QUAD-L] sweating

[Dana Wray]

They are no longer making a Medications I have used for decades call
propanethine. 15 mg, it worked so great was sweating. Does anyone know of
any other medication for sweating.  My doctor is out of the office,
hopefully they will know of something. I hope somebody knows of something
better

On Sun, Jan 3, 2021 at 3:49 PM Nichole Rohling 
wrote:

> Hemorrhoids, any small skin sores, slits/tears near your bottom?
>
>
>
> Nichole
>
>
>
> *From:* Greg [mailto:g...@eskimo.com]
> *Sent:* Saturday, January 2, 2021 5:42 PM
> *To:* quad-list@eskimo.com
> *Subject:* [QUAD-L] sweating
>
>
>
> I have been sweating so bad the last few weeks. I have had lots of gas and
> it can cause sweating pain, but no idea why so much gas. My poo is soft and
> sticky and have a colostomy, but thats happened before but never this much
> sweating.
> Checked for uti, but ok.  Its when sitting, laying, etc.
> Anyone go through this?
> Greg
>

[QUAD-L] Congressional Sign-On Letter Closes Sept 18

[Dana Wray]

Sent from my iPad

> 
> 
> 
>   
> 
>  
> 
> 
> September 15, 2020
> 
> CRT Advocates and Friends, 
> 
> We only have a few more days to get Congressional signatures on the letter to 
> CMS to permanently protect important components (a.k.a. "accessories") used 
> with Complex Rehab manual wheelchairs. The closing date for signatures is 
> this Friday September 18.
> 
> Reps. John Larson (D-CT) and Lee Zeldin (R-NY) are leading the letter asking 
> that Competitive Bidding Program pricing for standard accessories not be 
> applied to Complex Rehab manual wheelchair accessories. The more signatures 
> the letter has when it's delivered, the more seriously it will be considered 
> by CMS.
> 
> We need your help! Please take 3 minutes today and visit 
> www.protectmymobility.org to send an email to your Member in the House of 
> Representatives asking them to sign on to the letter to protect access. The 
> email is pre-written for you. Just enter your information and click send!
> 
> We only have until this Friday, so thank you for taking action today. For 
> more details and a current list of signers, click below. 
> 
>  
> 
> See what's happening on our social sites
> 
> 
> 
> 
> 
>   
> National Coalition for Assistive and Rehab Technology, 54 Towhee Court, East 
> Amherst, NY 14051
> About our service provider
> Sent by dclayb...@ncart.us powered by
> 
> Try email marketing for free today!

Re: [QUAD-L] Celebrating Life 31 years after Transverse Myelitis!

[Dana Wray]

Belated Congratulations to Eric and Jim in case I did not.Dana

On Mon, May 18, 2020 at 11:56 AM Eric Olson  wrote:

> rock on James!
>
> On Sun, May 17, 2020 at 10:12 PM Jim Lubin  wrote:
>
>> On May 17, 1989, I suddenly, within minutes, went from a sharp pain in my
>> shoulder to becoming paralyzed from the neck down and dependent on a
>> ventilator to breathe due to acute idiopathic transverse myelitis. My
>> condition has not changed but I am otherwise in good health and grateful
>> for every day I am alive.
>>
>

[QUAD-L] Sweating

[Dana Wray]

What I have taken for sweating for years 15 mg

https://www.progressnp.com/wp-content/uploads/sites/29/2017/03/DN-Propantheline-lsw.pdf

Re: [QUAD-L] Quads and virus battle

[Dana Wray]

  Let’s keep each other posted. My love and prayers to everyone. By his stripes 
we are healed. Amen

Sent from my iPad

> On Mar 22, 2020, at 2:59 PM, Nichole Rohling  wrote:
> 
> 
> I haven’t heard of any. We are up to 67 cases and 2 deaths.
>  
> Nicki
> C5/6
>  
> From: Dana Wray [mailto:daanoo2...@yahoo.com] 
> Sent: Sunday, March 22, 2020 12:16 AM
> To: Nichole Rohling; Quad-list New
> Subject: Re: [QUAD-L] Quads and virus battle
>  
> We have 55 in Kansas Missouri has a few more I don’t know the exact number. I 
> am staying in. I’m sorry about your granddaughter being in the hospital And 
> your son, not being able to come back because of the travelAnd your son, not 
> being able to come back because of the travel bans. I pray they are able to 
> get home soon. 
>  
> Dana Prairie Village Kansas C-4 5, tracheostomy, ileo-conduit. Survivor of 
> bladder and colon Cancer. 45 years post.
>  
>  One of my caregivers has been out with the flu and her son and my other 
> caregiver, Her daughter was exposed to the Coronavirus.  It’s difficult to 
> find reliable caregivers, like Lori has written about. I try every way I can 
> think of.I don’t like colleges, because they don’t always have a stable 
> schedules and I need reliability. I tried to use college Students when I 
> lived in Lawrence Kansas University of Kansas 30 years ago .They were more 
> Short term, and we rely on long term, at least I do. 
>  
>  
>  
> Thank you for sharing Nichole. Have you heard of any Quadriplegics that have 
> gotten the coronavirus.I have not.
>  
> Sent from my iPad
> 
> 
> On Mar 21, 2020, at 3:14 PM, Nichole Rohling  wrote:
> 
> 
> What state are you in and how many cases do you have?
> I’m in OK and we have 53 w/ 300+ still waiting on test results.
> I stay in during the winter months due to the flu so being at home isn’t a 
> big deal for me. I am only in contact w/ 4 caregivers and 4 people in my 
> family.
> My son-in-law is in the Army and they were supposed to be moving back to OK 
> from Guam (they have 15 cases) the first week of May. Due to military travel 
> ban all moves are postponed until at least May 11. My granddaughter got out 
> of the hospital Sunday after fighting pneumonia and they are expecting a boy 
> the beginning of September. We were so excited for them to be home and then 
> this dang virus ruined our plans L
>  
> From: DAVID LEWIS [mailto:curlyle...@verizon.net] 
> Sent: Saturday, March 21, 2020 2:53 PM
> To: Nichole Rohling
> Subject: Re: [QUAD-L] Quads and virus battle
>  
> Very true,  i hope hospitals take that into mind. 
>  
> On Saturday, March 21, 2020, 03:24:10 PM EDT, Nichole Rohling 
>  wrote:
>  
>  
> It won’t be good. With our limited lung function, I think it would be deadly.
> 
>  
> 
> Nicki
> 
>  
> 
> From: DAVID LEWIS [mailto:curlyle...@verizon.net] 
> Sent: Saturday, March 21, 2020 1:35 PM
> To: Quad-list
> Subject: [QUAD-L] Quads and virus battle
> 
>  
> 
> How will quads do if the get it?

Re: [QUAD-L] Quads and virus battle

[Dana Wray]

We have 55 in Kansas Missouri has a few more I don’t know the exact number. I 
am staying in. I’m sorry about your granddaughter being in the hospital And 
your son, not being able to come back because of the travelAnd your son, not 
being able to come back because of the travel bans. I pray they are able to get 
home soon. 

Dana Prairie Village Kansas C-4 5, tracheostomy, ileo-conduit. Survivor of 
bladder and colon Cancer. 45 years post.

 One of my caregivers has been out with the flu and her son and my other 
caregiver, Her daughter was exposed to the Coronavirus.  It’s difficult to find 
reliable caregivers, like Lori has written about. I try every way I can think 
of.I don’t like colleges, because they don’t always have a stable schedules and 
I need reliability. I tried to use college Students when I lived in Lawrence 
Kansas University of Kansas 30 years ago .They were more Short term, and we 
rely on long term, at least I do. 



Thank you for sharing Nichole. Have you heard of any Quadriplegics that have 
gotten the coronavirus.I have not.

Sent from my iPad

> On Mar 21, 2020, at 3:14 PM, Nichole Rohling  wrote:
> 
> 
> What state are you in and how many cases do you have?
> I’m in OK and we have 53 w/ 300+ still waiting on test results.
> I stay in during the winter months due to the flu so being at home isn’t a 
> big deal for me. I am only in contact w/ 4 caregivers and 4 people in my 
> family.
> My son-in-law is in the Army and they were supposed to be moving back to OK 
> from Guam (they have 15 cases) the first week of May. Due to military travel 
> ban all moves are postponed until at least May 11. My granddaughter got out 
> of the hospital Sunday after fighting pneumonia and they are expecting a boy 
> the beginning of September. We were so excited for them to be home and then 
> this dang virus ruined our plans L
>  
> From: DAVID LEWIS [mailto:curlyle...@verizon.net] 
> Sent: Saturday, March 21, 2020 2:53 PM
> To: Nichole Rohling
> Subject: Re: [QUAD-L] Quads and virus battle
>  
> Very true,  i hope hospitals take that into mind. 
>  
> On Saturday, March 21, 2020, 03:24:10 PM EDT, Nichole Rohling 
>  wrote:
>  
>  
> It won’t be good. With our limited lung function, I think it would be deadly.
> 
>  
> 
> Nicki
> 
>  
> 
> From: DAVID LEWIS [mailto:curlyle...@verizon.net] 
> Sent: Saturday, March 21, 2020 1:35 PM
> To: Quad-list
> Subject: [QUAD-L] Quads and virus battle
> 
>  
> 
> How will quads do if the get it?

Re: [QUAD-L] Wondering

[Dana Wray]

Thank you Jim you are such a blessing to our group. I love this group even
though it seems like there are a few of us we tried to be there for each
other. It makes us not feel so different in a world that is not really set
up for Quadriplegics. Does anyone have any new information about EVV The
independent living center person I know says that Kansas is in compliance.,
but The congressman walking at the bill don’t seem to want to change itThe
congressman working
Please join Stop EVV On Facebook, so you can keep informed about what is
going on in each state and in Washington. Thank you Dana 45 years post ,
QuadriplegicC4-5 complete  but it was so technical. tracheostomy,
ileo-Conduit. 45 years post. I’ve had bladder and colon cancer, I just had
kidney stones in November and had to have tubes in both kidneys before the
surgery to allow my bladder to drain. The specialist said I will continue
getting and would need to be scanned every six months. I didn’t know this
was a consequence of having ileo-conduit. The stone doctor at KU Medical
Center explained,But it was so technical.

On Mon, Feb 10, 2020 at 11:03 AM Jim Lubin  wrote:

> I found this page with contact info depending on what issue you have
>
> https://hhs.texas.gov/services/health/medicaid-chip/about-medicaid-chip/medicaid-chip-contact-us
>
> some have online forms instead of email contacts.
>
> On Sun, Feb 9, 2020 at 6:41 PM  wrote:
>
>> Hello my friends I am from Texas do you guys know if there's some way
>> that I could get Medicaid email address any ideas will be appreciated thank
>> you and God bless you
>>
>

Re: [QUAD-L] I would like to say to everyone a you

[Dana Wray]

 Hello Quad-List,
I would like to wish everyone a Belated merry Christmas and a happy new
year. I appreciate this format to ask questions and give input. It helps us
to feel we are not alone in the world we live in. We understand each
other‘s problems as much as we can. Thank you everyone for sharing and
caring about one another.
God bless you now and throughout the new year. I pray for my friends also.
We all need to fight against EVV to take away our rights to live
independently without invasion of our privacy. Please join the group, Stop
EVV on Facebook immediately to keep abreast of what is going on in our
country. We need to contact our  representative  right now. The website
will give you all the information you need to know how to uphold your
ability to come and go in your community
Thank you Jim for starting this amazing group.
Dana

On Mon, Dec 30, 2019 at 8:44 PM Jim Lubin  wrote:

> I also want to wish everyone a healthy new year! Take care and God Bless!
>
>
> On Mon, Dec 30, 2019 at 4:24 PM  wrote:
>
>> Hello my friends the ear is almost over tomorrow midnight is going to be
>> a you ear beside we don't know each other I want to wish you every one of
>> you and to your family a happy new year and a safe one hopefully this ear
>> coming up is a better year for you and your family I will be praying for
>> you for your wish that will come through also very healthy ear you have
>> these here coming up I know it is hard to stay away from the hospital
>> nobody likes to be in the hospital but our condition doesn't help and we
>> don't have too much choices in life a course some of us are age doesn't
>> help were not getting any younger some of us keep on holding on I know
>> being a quadriplegic is not simple I will be praying everyone of you that
>> these ear coming up is a better year for you and your family I do
>> understand everyone a you and takes another disabled person to understand a
>> disabled person also I will be praying for everyone to you that Jesus will
>> open that right door for your future and better things and God bless you
>> every one of you and to your family and happy new year again take care
>>
>>
>>
>

Fwd: [QUAD-L] cell phone holder

[Dana Wray]

I need something with A long Gooseneck I can reach with my stylus.I don’t
have a lot of dexterity to reach the one you were talking about. I asked
the dealer about it already. We all have such different levels.C4-5. Has
anyone ever used the program Dragon anywhere they have a monthly charge.
Thank you
Dana

I enjoyed the article that  Ishmael shared.
Has anyone heard of the oracle by Jonathan Cahn. It is a fascinating book.
My caregiver ordered through Sid Roth.com
It was $49 and included six CDs. Information that were not fit in the book.
You can listen to a lot of YouTube Videos that Jonathan Cahn is in.  It’s
hard for me to read a book so I enjoy the CDs and YouTube videos.
Thank you
-- Forwarded message -
From: Noel 
Date: Fri, Nov 29, 2019 at 8:28 AM
Subject: Re: [QUAD-L] cell phone holder
To: Dana Wray 


Dana, this may be the one you have tried already, but I got an adapter
from Permobil that works with Ram X-grip. I can use it for a cell
phone, as well as a tablet. You can get the X-grip in several places,
but I believe the part that mounts to the wheelchair is only available
from Permobil.
http://permobilus.com/product/ram-x-gripphone-holder/

On Fri, Nov 29, 2019 at 3:36 AM Dana Wray  wrote:
>
> I keep looking for one I can fit on my permobil, That I can reach there
used to be a company that made devices, but I don’t remember the name. I
think the owner was a quadriplegic. Does anyone remember the name? I have
searched on Google and Amazon.? Thank you so much.The one I am using clamps
to my side pad I would appreciate any suggestions. by one side of it just
broke.  The one I am using clamps to the side pad by one side of it just
broke. I ordered the One that I thought what work with my iPhone, But it’s
not sturdy I would appreciate any suggestions. Please forgive my errors
it’s hard to correct my iPad.
> Dana C4-five Quadriplegic, 45 years
>
> On Wed, Nov 20, 2019 at 9:26 PM Lori Michaelson 
wrote:
>>
>> That one is very similar to mine but I only used my cell phone in that
manner to watch a movie or a TV series on my bowel regimen nights. I don't
watch TV so I keep my cell phone in a little pouch on my chair and operated
through a Bluetooth to make phone calls. I use my Desktop PC for everything
else.
>>
>> On Wed, Nov 20, 2019 at 7:18 PM Jim Lubin  wrote:
>>>
>>> I got a new cell phone holder that claps to my over-the-bed table. This
one is for phones 4in to 6.3in.
>>> https://smile.amazon.com/dp/B07P2VK93P/
>>>
>>> The old holder turned out was too tight a grip on my phone that it
actually split the back right off my phone!
>>
>>
>>
>> --
>> “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] cell phone holder

[Dana Wray]

I keep looking for one I can fit on my permobil, That I can reach there
used to be a company that made devices, but I don’t remember the name. I
think the owner was a quadriplegic. Does anyone remember the name? I have
searched on Google and Amazon.? Thank you so much.The one I am using clamps
to my side pad I would appreciate any suggestions. by one side of it just
broke.  The one I am using clamps to the side pad by one side of it just
broke. I ordered the One that I thought what work with my iPhone, But it’s
not sturdy I would appreciate any suggestions. Please forgive my errors
it’s hard to correct my iPad.
Dana C4-five Quadriplegic, 45 years

On Wed, Nov 20, 2019 at 9:26 PM Lori Michaelson 
wrote:

> That one is very similar to mine but I only used my cell phone in that
> manner to watch a movie or a TV series on my bowel regimen nights. I don't
> watch TV so I keep my cell phone in a little pouch on my chair and operated
> through a Bluetooth to make phone calls. I use my Desktop PC for everything
> else.
>
> On Wed, Nov 20, 2019 at 7:18 PM Jim Lubin  wrote:
>
>> I got a new cell phone holder that claps to my over-the-bed table. This
>> one is for phones 4in to 6.3in.
>> https://smile.amazon.com/dp/B07P2VK93P/
>>
>> The old holder turned out was too tight a grip on my phone that it
>> actually split the back right off my phone!
>>
>
>
> --
> “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
>

[QUAD-L] Falling over from Scoliosis

[Dana Wray]

 I Use a peanut Pillow from Tempur-Pedic it is so great for cushioning my
elbows, I had a little tiny pinhole that turns into osteomyelitis. Every
couple months they go on sale two for the price of one. I always buy
then.You can cut in any size to fit under your feet or wherever you get
pressure are use on several spots. It is wonderful sign up for the mailing
list and you will know when they are on sale. I first bought at bed bath
and beyond they have them also along with Amazon.I fall over a lot because
of scoliosis in my hip was broken and cannot be repaired because of
Osteoporosis. One of my caregivers pulled the wrong way doing range of
motion exercises. I put 1 on the top of each armrest. You can also put on
your feet to prevent your heels rubbing. I wanted to share with the
group.Dana C 4-5

https://www.tempurpedic.com/search/?query=+Peanut+Pillow

Re: [QUAD-L] Celebrating

[Dana Wray]

 Congratulations Michael, I don’t think I’ve had the pleasure to meet you.
Are you on Facebook. I am under Dana Wray
 It will be 45 years post for me on July 26.  It will be 45 years post for
me on July 26.

On Sun, Jul 14, 2019 at 12:13 PM Michael Galvin  wrote:

> I think it's a good idea to celebrate another year of your disability, not
> just for yourself, but to show others that will follow that their is life
> after a disability.
>
> PQ / C5/6 - almost 50 years now.
>

Re: [QUAD-L] anniversary

[Dana Wray]

 It’s good to hear from you again Glyan. Someone asked me the other day,
why do we celebrate our anniversaries of being paralyzed? I think it is
great do you make it another year and still be alive to enjoy life. What do
you think? Dana C4-5 MVA 45 years on the 26th.
 We all face a lot of obstacles to survive. I’m so sorry to hear about
Bobby and Greg. I hate it when we lose one of our fellow members  and
friends.Comfront their love ones and surround them with angels. Amen

On Wed, Jul 10, 2019 at 5:12 PM Eric Olson  wrote:

> I'm actually glad you posted.  May I ask what your disability is?  SCI?
> If so, what level?  With all the bad news lately, something positive is
> welcome
>
> On Wed, Jul 10, 2019 at 3:29 PM glenn henry  wrote:
>
>>
>>  I wasn't going to post, but I guess I will. At this time 53 years ago I
>> was in surgery. I think I made it, at least on your now. The last year has
>> been very rough, but we keep plugging on.
>>
>> Why be able to post 54, we will see.
>>
>> Glenn Henry/ Pennsylvania
>>
>

Re: [QUAD-L] A favor

[Dana Wray]

 Happy Fourth of July! Dana  almost 45 years poster

On Tue, Jul 2, 2019 at 10:38 PM johnny Cammon  wrote:

> That I will
> --
> *From:* ismaelcavaz...@gmail.com 
> *Sent:* Tuesday, July 2, 2019 10:37 PM
> *To:* 'johnny Cammon'
> *Subject:* RE: [QUAD-L] A favor
>
>
> Thank you and have a nice day tomorrow
>
>
>
> *From:* johnny Cammon 
> *Sent:* Tuesday, July 2, 2019 10:34 PM
> *To:* ismaelcavaz...@gmail.com; quad-list@eskimo.com
> *Subject:* Re: [QUAD-L] A favor
>
>
>
> You're welcome and thank you for the God bless! I like to say God bless to
> you to.
>
> I Really Appreciate it
> --
>
> *From:* ismaelcavaz...@gmail.com 
> *Sent:* Tuesday, July 2, 2019 9:39 PM
> *To:* 'johnny Cammon'
> *Subject:* RE: [QUAD-L] A favor
>
>
>
> Thank you for responding God bless you have a nice day tomorrow
>
>
>
> *From:* johnny Cammon 
> *Sent:* Tuesday, July 2, 2019 9:25 PM
> *To:* ismaelcavaz...@gmail.com; 'Blue' ;
> da...@immortaldesigns.co; 'Blue' 
> *Subject:* Re: [QUAD-L] A favor
>
>
>
> I got you
> --
>
> *From:* da...@immortaldesigns.co 
> *Sent:* Tuesday, July 2, 2019 8:56 PM
> *To:* ismaelcavaz...@gmail.com; 'Blue'
> *Subject:* RE: [QUAD-L] A favor
>
>
>
> Got it
>
>
>
> *From:* ismaelcavaz...@gmail.com 
> *Sent:* Tuesday, July 2, 2019 4:59 PM
> *To:* Blue 
> *Subject:* [QUAD-L] A favor
>
>
>
> Hello guys it been a while I have not received a message from the quad
> list and push me to think if unconnected I will appreciate it if you can
> send me a message please Chester tested out thank you and God bless you
>

Re: [QUAD-L] Test Message

[Dana Wray]

 Still here as well   Dana

On Tue, Jun 11, 2019 at 1:45 AM Ed Tessier  wrote:

> Still here as well
>
> Ed
>
> On Mon, Jun 10, 2019 at 12:22 PM  wrote:
>
>> Just checking to see if anyone in the Quad list is there.  I haven’t
>> received anything lately.  Thank you.
>>
>
>
> --
>
> Edward Tessier
> Vice President
> 191 W 4th Street
> 
> Pomona, CA 91766
> 
> M (909) 994-5900
>
>

[QUAD-L] Action alert: ask your Representative to support Proposed Bill for Protecting People from EVV

[Dana Wray]

http://www.advocacymonitor.com/action-alert-ask-your-representative-to-support-proposed-bill-protecting-people-from-evv/?fbclid=IwAR1-s0fWam6WdK_7QVsvuAll3m8n5K7hbZ8xRWEPT8KXz_YzH3zBbhYBK-I

  Congressional switchboard 202 224 3124
  You can also find your members  contact information at house.gov
 The scrips for assistance is written for you.  It is so informative.  Sign
up on Facebook
 Help stop  Electronic Visit Verification
which was in the original article that Jim posted by  Kendra  Scalia


https://disabilityvisibilityproject.com/2019/03/24/electronic-visit-verification-evv-is-here/

 You can also go to the  National Council of independent living

 I hope all of you read  carefully. I had to read a number of times  See if
your member  is on the US House of Representatives Energy and Commerce
Committee.

Re: [QUAD-L] MRI

[Dana Wray]

 That is a wonderful idea I had  osteomyelitis in my elbow from a sore. The
wound Clinic scraped it too far and I had to have surgery at K U  I sweat
all the time and I use a pill called  Propantheline  10 mg. I can take up
to three a day. I was given by my rehab doctor decades ago.
Dana

On Thu, Apr 18, 2019 at 7:48 PM Greg  wrote:

> Getting an MRI tomorrow on my butt. I hate getting those. My sore was just
> surface, but after a month broke open and was tunneling deep. I sweat very
> bad just sitting up for a few minutes. My last sore was much worse but
> never made me sweat. No infection, but they want to see inside an check for
> bone infection.
>
>
> Greg
>

[QUAD-L] How is your state implementing EVV

[Dana Wray]

  Hi Bobbie  and all fellow quadriplegics,
  Did you read the article about Electronic Visit Verification posted by
Jim Lubin I wanted to find out and how other states  have proposed  how
this deal with. Legislation that was slipped into  The American Cures Act
in May 13, 2016.
  How can we fight this legislation  it requires the implementation For all
personal care services(PCA)And home health care services HCBS Funded by
Medicaid. The physical disabilities waiver.Look up the national Council on
independent living.
  Taken from the website.
 Thank you for any additional information you can provide.
 Dana

[QUAD-L] New EVV Advocacy Document and Opportunities to Take Action!

[Dana Wray]

http://www.advocacymonitor.com/new-evv-advocacy-document-and-opportunities-to-take-action/


Sent from my iPad

[QUAD-L] Representative Diana DeGette committee on energy and commerce

[Dana Wray]

Skip to main content


Committee on Energy and Commerce
Send U.S. Rep. DeGette an e-mail

Denver Office
600 Grant Street, Suite 202
Denver, CO 80203-3525
Phone: (303) 844-4988
Fax: (303) 844-4996



Washington, D.C., Office
2111 Rayburn House Office Building
Washington, D.C. 20515-4329
Phone: (202) 225-4431
Fax: (202) 225-5657

*Please note mail sent to my Washington, DC office will be delayed due to
security concerns surrounding recent events.

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Washington, DC Office
Denver District Office
Denver District Office
600 Grant Street, Suite 202
Denver, CO 80203
Phone: (303) 844-4988
Fax: (303) 844-4996
Office Hours:
M-F 8:00 - 5:00

Washington, DC Office
2111 Rayburn House Office Building
Washington, DC 20515
Phone: (202) 225-4431
Fax:(202) 225-5657
Office Hours:
M-F 9:00 - 6:00

Denver District Office
600 Grant Street, Suite 202
Denver, CO 80203
Phone: (303) 844-4988
Fax: (303) 844-4996
Office Hours:
M-F 8:00 - 5:00

Washington, DC Office
2111 Rayburn House Office Building
Washington, DC 20515
Phone: (202) 225-4431
Fax:(202) 225-5657
Office Hours:
M-F 9:00 - 6:00

[QUAD-L] Story about a quadriplegic on Dr. Phil

[Dana Wray]

Sorry about such late notice but Dr. Phil is going to have a story about a
quadriplegic and his girlfriend doing all the care. I saw a clip from that
and Dr. Phil was telling them you can’t be a girlfriend and a caregiver. It
ought to be interesting. I watch the clips on Dr. Phil.com yesterday end it
was supposed to air on March 12 on CBS but then I found this at night on
the own network at 10 AM. I am recording it. It will be interesting to see
everyone’s comments about the show.

Re: [QUAD-L] Sweating iPad holder

[Dana Wray]

 My  sweating  is sometimes for no reason but other times it’s because my
my tubing is not draining the urine from my ileo  conduit. I wanted to
share with you something I just found on the Internet and it works great
for iPad.
It hooks onto your desk and it stretches very far out so you can get under
it comfortably to use it

CTA Digital PAD-HASM Heavy-Duty Articulating Tablet Security Arm

* I don’t know if I can send a picture. *

*Dana *


To anybody if you give me your email address. I know you will be pleased
with this product. I love it.


On Mon, Mar 4, 2019 at 6:23 PM Greg  wrote:

> I've checked everything. Even though my butt wound is small, more like a
> skin sheer, just the skin rubbed off a tiny spot. I've been seeing a
> wound doc just in-case it was the cause. He doesn't think so, even when
> he pokes and prods I don't sweat.
>
> Bladder makes me sweat more than anything, but no UTI. I don't think a
> draining issue, because I can sweat just seconds after sitting up.
> Sometimes hours after, it comes and goes.
>
> Thinking bowel, but everything is moving fine. I am having a lot of gas,
> that can be painful. But when ever I sweat a lot, it seems to cause some
> gas. My Uro says uti's, etc can cause abdomen area spasms and that can
> cause gas.
>
> The back of my neck is just wet today. Driving me nuts. Can't get into
> my Uro until the 25th. He just left on vacation. But if not better soon,
> I'll see if I can see someone else.
>
> Greg
>
>

Fwd: [QUAD-L] DNR. DNI

[Dana Wray]

-- Forwarded message -
From: Dana Wray 
Date: Thu, Feb 7, 2019 at 3:27 AM
Subject: Re: [QUAD-L] DNR. DNI
To: Bobbie Humphreys 


I have in the past but I don't know what they get updated. I need to see if
it is in my medical partners. Thanks for talking about that so I can work
on trying to get mine done. That's always the first question they ask you
when you going to the hospital. They have asked me to do the shock several
times and I always said no. I don't think there is a guarantee that you
would come back the same. What is your opinion. I think I forgot to put
reply all. Would you forward for me if I did not. We never know when were
going to be septic. I've had that happen quite a number of times and been
delirious. I wasn't, twice during the same hospitalization. Dana thank you
Bobbie

On Mon, Feb 4, 2019 at 7:01 PM Bobbie Humphreys 
wrote:

> I'm having a will, advanced directive and DNR/DNI written up by my
> attorney. He said a DNR/DNI needs to be signed off by my GP But my GP said
> he does not need to be signed off by him to be legal in .New Jersey.
>
> Has anybody had the above done?
> Am I missing anything?
> Bobbie
>

Re: [QUAD-L] Sores

[Dana Wray]

   I am so sorry. We need to really check our roho’s  every day but we
don’t. I have heard of many people getting burned On heating pads  and
electric blankets, since I first joined the Quad-list.
 I recently was burned when my hot coffee glass’s straw broke . It was a
Drink Aide straw attached to insulated mug that I got at CVS. We   Were
duct  taping it together. A caregiver was not carefully watching and it
 siphoned .I am now I am using a Fleximug by Fleming. You can order
different lengths of straws. We don’t know we are getting burned because we
can’t feel.
 I have had long straw siphon quite a number of times causing burns, but I
didn’t need surgery. They did need debriefing and  wound care appointments
for several weeks .

It is terribly unfortunate that the Roho  Corporation cannot make a device
to check the quantro cushion  for the proper air distribution . Why sell a
product that can cause wounds on Spinal cord injuries. It has happened to
me several times .
Dana C 4-5 44 yrs post

On Fri, Jan 25, 2019 at 7:08 PM Greg  wrote:

> I wanted to dress up a bit for a photo, jeans instead of sweats. Only 1
> day and I got a sore on my butt. It was not bad, but kept getting worse.
> Found out I was bottoming out my Roho. The cover I used was a bit too big.
> So the Roho was spreading out too much.
>
> Now last night my shoulder really hurt so I used a heating pad. Like a
> mini electric blanket 2x2 feet. It left a big burn blister about 2 inches.
>
>
> Greg
>

Re: [QUAD-L] Wheelchair cushin

[Dana Wray]

 What is a smart check  for your R Roho?I have not heard of. Thank you Dana

On Thu, Nov 1, 2018 at 7:28 AM Noel  wrote:

> I received a new wheelchair a couple months ago, it came with a Roho
> cushion and a smart check device.
>
> https://permobilus.com/product/smart-checkby-roho/
> On Wed, Oct 31, 2018 at 9:10 PM Greg  wrote:
> >
> > I had a Roho go flat and cause a sore, so I now have a 1 inch thick,
> firm, memory foam, pad under my Roho. Just incase. They make a pressure pad
> with an alarm. If it goes flat it goes off. A OT gave me one years ago, but
> never worked right.
> > Greg
> >
> >
> >
> > On 10/31/2018 12:23 PM, Lori Michaelson wrote:
> >
> > Hi Glenn,
> >
> > Ever since I had my  Stage III wound [actually two of them] in 2010 and
> I told my story of what happened on the Care Cure Community... the
> president of the  ROHO contacted me and suggested their cushion would work
> the best for me BECAUSE OF MY CONDITION. So, since then, I have been using
> a Roho Quadtro Select High Profile cushion but I also have a  Roho Quadtro
> Select Low Profile  cushion. But, this is all based on my compromised skin.
> >
> > The only thing I don't like about these cushions is they have to be
> constantly checked (maintenance) to make sure they are not going flat but
> the owner is great to work with.  I have not had to add or take out any air
> in a long long time but that is because my skin is now doing great. Every
> other part of me is falling apart (especially the bladder) and so many
> other things but that is because I am living alone for the first time in my
> life and don't get much help with anything except for my care.
> >
> > Here are photos of the different cushions (which come with washable
> covers):
> https://www.pressuresorecushions.com/collections/roho-cushions?utm_campaign=ROHO%20Cushions_content=ROHO%20Cushions%20-%20Shop_medium=cpc_source=bing_term=roho%20wheelchair%20cushion
> >
> > But if you are not having any problems with any wounds... a Varilite
> cushion is what I was using before and liked.
> >
> > Best, ~Lori
> >
> > On Wed, Oct 31, 2018 at 12:10 PM glenn henry  wrote:
> >>
> >> Hello all,
> >>
> >> I have been using the same style of wheelchair cushion over the past 48
> years. The company seems to be in limbo after a fire at the factory. They
> claim that they will be in business again, but I'm beginning to doubt after
> five months.
> >>
> >> What I would like people to comment on is the type of wheelchair
> cushion you are using and your experiences.
> >>
> >> The pad that I used was made by Hudson medical. It was called a Jobst
> hydrofloat pad.
> >>
> >> Thanks for your concern and your comments, hopefully I can find a new
> type of pad case they do not come back in business.
> >>
> >>
> >> Glenn
> >
> >
> >
> > --
> > "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] Oldest living Quads

[Dana Wray]

 Congratulations Billy
On Wed, Jan 2, 2019 yat 5:06 PM Billy Lang  wrote:

> I will be 70 in May, 30 years post in July. Just got a real good reason to
> hang around.
>
>
> On Dec 26, 2018, at 4:48 PM, Jim Lubin  wrote:
>
> Some of the quads in this group are the longest living that I have seen.
> Maybe it's the good company. 
>
> Merry Christmas
>
> On Wed, Dec 26, 2018 at 1:15 PM Bobbie Humphreys <
> bobbiehumphre...@gmail.com> wrote:
>
>> Depends on a lot of factors
>> I ca feel myself dying, I'm at 46 years
>>
>> Merry Christmas 
>> Bobbie
>>
>> On Dec 26, 2018, at 1:48 PM, Shirley Bell  wrote:
>>
>> Hi Guys, Merry Christmas!! kinda late. My family has me dead and buried
>> before long!  Made me mad. I am 59 been a quad 41 yrs. Are there any stats
>> on life expectancy of us? thanks
>>
>>
>

Re: [QUAD-L] Strange Question

[Dana Wray]

 Hi Lori, Eric,Jim, Greg, Nancy and  all fellow Quad-list  members,
I have suffered  numerous  medical situations  that could’ve ended my life.
The Lord is not finished with me yet.   Lori  and all, I commend you on
your survival  experiences. I wish I could document all my experiences like
Lori  is able to do. I  thank you all  for sharing your life stories.  I
 have had some strange experiences when septic. I was  in a coma twice.
Several situations were physician error. Yesterday after leaving a
appointment  for blood work and Prolia  shot for osteoporosis. My caregiver
hit the curb and blew out my tire and wheel  on the front right tire. I was
able to get it towed by AAA but it took an hour and a half to find someone
to bring me home. A taxi service said they did not provide that kind of
transportation.  Finally someone through AAA found out three places to
call. It happened around 5:30 PM and I got home around   9:30 PM. I am  at
blessed  that AAA waited till 10-10  large wheelchair  assessable van
 arrived. I thought it was going to be a desperate situation.  AAA  wanted
to pay for it  by credit card but the taxi company would not accept. I
thought this was strange. Has anyone else ever had this experience, when
their vehicle was not drivable?
 Dana C4-5  complete, 44 years post. 7/26/74, passenger in a motor vehicle
 accident at 20
On Fri, Dec 21, 2018 at 1:21 PM Lori Michaelson 
wrote:

> My injury (car accident) happened nearly 40 years ago and I was in the
> hospital for a total of 13 months (October 1979 to the end of November
> 1980) because I was so bad. I was not even able to sit up until I got to
> rehab so I was flat on my back for at least two thirds of that time  which
> included a neck fusion and having a tracheotomy at least 8 months. During
> that time alone I came close to dying so many times I can't even remember
> if and ever since.
>
> I had such a bad neck injury that I choke often but have figured out that
> it is from tight neck muscles so it is 100% easier for me to swallow laying
> down. I have choked over 1000 times or more whereby I almost died. A
> neurosurgeon nearly killed me in Brooklyn New York after I finally got the
> diagnosis of Posttraumatic Syringomyelia and would have easily died if my
> ex common-law husband of 13 years was not with me. They let cerebral spinal
> fluid leak out of the back of my head for two weeks without doing anything!
>
> That is only a small list of so many times and I almost died this year
> when my sodium level dropped so low that I did not know who I was, began
> chewing on my finger without even knowing it (and I would have broken it
> had my caregiver not noticed it was happening) so I was rushed to the
> hospital and spent two weeks in ICU, aspirated twice before and after the
> hospital requiring a chest tube and one week later for a total of three
> weeks in the hospital this year. Unbelievable.
>
> ~Lori
>
> On Fri, Dec 21, 2018 at 10:46 AM Eric Olson  wrote:
>
>> A couple times but try to learn something so it doesn't happen again
>>
>>
>> 
>>  Virus-free.
>> www.avast.com
>> 
>> <#m_-9073437861150003753_m_-1256766246196393347_m_1553701315410400077_DAB4FAD8-2DD7-40BB-A1B8-4E2AA1F9FDF2>
>>
>> On Thu, Dec 20, 2018 at 7:13 PM Greg  wrote:
>>
>>> Since your injury, how many times, because of your injury, have you come
>>> close to passing?
>>>
>>> Me, 3 Times...
>>>
>>> OD, medication interaction.
>>>
>>> Almost fell in Pool when no one was around, seatbelt on. (I no longer
>>> use a seatbelt, only chest strap if I go out by myself. Actually a few
>>> close calls.
>>>
>>> Choking, eating bread, it got stuck very bad. Could not breath. Semi
>>> heimlich got it out.
>>>
>>> Greg
>>>
>>
>
> --
> "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] Holiday

[Dana Wray]

  Belated happy Thanksgiving to all. Thank you  for your prayers and I am
happy that  you know Jesus and he is alive for everyone.  I asked the Lord
to bless you and give us wisdom and protect us all quadriplegic
complications and I asked for his healing touch to heal everyone
experiencing quadriplegic  complications.  Praying for all my friends on
the list. Amen

On Fri, Nov 23, 2018 at 1:28 PM Eric Olson  wrote:

> Amen brother
>
> On Thu, Nov 22, 2018 at 5:06 AM Ismael Cavazos 
> wrote:
>
>> Wishing you all you guys a happy Thanksgiving to you and your family
>> enjoy and for people that doesn't have family you're not alone Jesus is
>> there for you and for everyone and I will be praying for everyone have a
>> safe holiday in my prayers will be with you guys God bless you and have a
>> nice day
>>
>

Re: [QUAD-L] Fwd: Very bad side effects taking when taking antibiotics for UTI

[Dana Wray]

 I don’t do well with that drug.Dana

On Wed, Nov 14, 2018 at 5:20 PM Greg  wrote:

> IV Antibiotics don't bother my stomach pain wise, but can cause runs.
> Most UTI ones I can do ok, but now and then Leviquin (sp) will cause huge,
> double over, stomach pains, can't eat. feel sick. Taking with lots of food
> and extra water helps. Some swear by Yogurt with active cultures. If its
> ok, I ask for half dose, but take twice as often.
>
> Stay ut of sun on antibiotics.
>
> Greg
>
> On 11/14/2018 11:59 AM, Jim Lubin wrote:
>
>
>
> -- Forwarded message -
> From: DAVID LEWIS 
> Date: Wed, Nov 14, 2018 at 10:17 AM
> Subject: Very bad side effects taking when taking antibiotics for UTI
> To: Quad-list 
>
>
> Hi
> Ive been a quad since i was 18 from auto accident. Im 60 now.
> I have had a Texas cath all my quad life.
> Its a condom and glue that holds it externally.
> Ive had some uti infections now and again .
> 1 have one now and my urology dr. put me on sulfameth/tmp 2 times a day
> for 7 days
> i have taken antibiotics before but i never ever had such a bad reaction
> effects from.this one. I was light headed felt sick to my stomach, could
> not eat anything because of no appetite felt, felt anxiety, got blurry
> vision and could not sleep from stomach upset.
> i finished the week but i will NEVER EVER take that med again.
> Can you guys please  tell me how you put up with uti antibiotics that you
> had a hard time takings.
> Also is there any ideas to prevent these bad side effects when taking uti
> meds.
> What if i had taken this in IV and it  would bypass stomach?
> What do you guys think?
> I hope some of your comments back can help me
> Thank you sooo much.
> Johhny
>
>
>
>
>
>

Re: [QUAD-L] It's hard

[Dana Wray]

 I know how you feel and I agree. Dana

On Mon, Nov 5, 2018 at 4:49 PM Bobbie Humphreys 
wrote:

> I find it very hard to be patient ALL-THE-TIME.
> Bobbie
>
> "Be the change you want to see in the world". Gandhi
>
>

Re: [QUAD-L] employer/employee contracts to share

[Dana Wray]

 Hi fellow members:
 Wondered if anyone would  be willing to share  employer/employee contracts
they have figured out. I would appreciate any help.
 Thank you, Dana C 4-5, 44Years post good yeah they are

 I wanted to share with you In  great insulated glasses. They have a number
of links   Of adjustable straws by  Fleming Fleximug. I have been using
Drink Aide . My straw broke  allowing siphoning causing third-degree burns
and I had to have surgery and skin graph.  You can buy them through Amazon
or Fleming. They were made for a mother with MS.   I had a wound VAC and I
had to be hospitalized.  They are expensive but well worth that cost. They
can be use for cold or hot drinks.

On Fri, Nov 2, 2018 at 2:14 PM Jim Lubin  wrote:

> I think I did before Mobizen but couldn't get it to work. Vyor is working
> good for me.
>
> Yes, Android, moto g6. When first deciding on which phone to get I could
> not find any way to control and iphone from a Windows pc. I can mirror an
> iphone/ipad to my pc but can't control it. With Android I can use my pc
> (with my adaptive keyboard/mouse) to control the phone.
>
> On Fri, Nov 2, 2018 at 10:05 AM Eric Olson  wrote:
>
>> Have you ever tried Airdroid (assuming you have an Android phone)?
>>
>>
>> 
>>  Virus-free.
>> www.avast.com
>> 
>> <#m_7379034035032449480_m_-5315113332566265674_DAB4FAD8-2DD7-40BB-A1B8-4E2AA1F9FDF2>
>>
>> On Thu, Nov 1, 2018 at 7:00 PM Jim Lubin  wrote:
>>
>>> Glad it works for you! It was working for me, but then it stopped
>>> working with my new phone. It was mirroring but I was no longer able to
>>> control the phone.
>>>
>>> I am now using Vyor Pro https://www.vysor.io/
>>> It works pretty much the same as Mobizen but nothing needs to be running
>>> on the phone.
>>>
>>> On Thu, Nov 1, 2018 at 12:34 PM  wrote:
>>>
 Jim

 I want to thank you for telling me About Mobizen.  It has given me
 another step of independence as I now I don’t have to ask for help with my
 phone.  Each and every thing helps just a little.   Joan



 "Nothing is impossible, the word itself says I'm possible" Audrey
 Hepburn





>>>

Re: [QUAD-L] iPhone holder to pick up and hold

[Dana Wray]

  I  use a phone holder from Amazon that I have screwed to my bed. I cannot
operate it but I can look at it  you may have better use of your arms to
touch the screen. I have the 6S plus. I found another phone holder that is
longer that you have to order from Brookstone. I like the longer length As
my clamp It to my side pad and attach it with  it to my side pad and attach
it with  velcro to a desk that clamps to my chair but I don’t usually use
.. phone holder can be adjusted so you can reach it with your stylus. I am
still using a longer claim that I got a few years ago at Bed bath and
beyond.

On Sat, Oct 6, 2018 at 3:46 PM Amy Elizabeth Baldwin <
the.littleq...@yahoo.com> wrote:

> Have you tried putting some type of ribbon or strap around the phone??
> This would be my suggestion!
>
>
> Sent from Yahoo Mail on Android
> 
>
> On Thu, Oct 4, 2018 at 3:04 PM, Bobbie Humphreys
>  wrote:
> Sorry I wasn't more clear about my situation.
> I'm a C-5,6,7 45 years post
> I spend a lot of time in bed
> My arms are getting much weaker
>
> I want to be able to pick up the iPhone, hold it with one hand using my
> thumb.
> I'm looking into buying the largest iPhone or the next one down ... screen
> size wise.
>
> What could you guys suggest?
> Bobbie
>
>
>
> "Be the change you want to see in the world". Gandhi
>
>

[QUAD-L] Fw: Signatures Needed on Congressional Letter to CMS Regarding Competitive Bidding

[Dana Wray]

Sent from Yahoo Mail for iPhone


Begin forwarded message:

On Wednesday, September 26, 2018, 1:18 PM, NCART  wrote:

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September 26, 2018
CRT Stakeholders and Advocates,
In ongoing efforts to improve the regulations around Medicare's DME Competitive 
Bidding program and new payment rates, there is a sign-on letter being 
circulated within the House of Representatives.  The letter is being led by 
Representatives Cathy McMorris Rodgers (R-WA) and Dave Loebsack (D-IA).  Your 
Member's signature is needed by end of day Friday.  
The sign-on letter relates to a recent CMS Proposed Rule and calls for 
improvements to the Competitive Bidding program and increased payment rates in 
the bid and non-bid areas. The recommended changes would provide needed relief 
for 

Re: [QUAD-L] choking

[Dana Wray]

Great inf.
Dana

On Sat, Aug 25, 2018 at 4:16 PM  wrote:

> Boy Greg
>
> It certainly hasn’t been your best period of time the last little bit!  Do
> you use the quad cough assist at all?  We use it every day that I need to
> have my nose blown (and seeing how it’s allergy season that’s quite a bit)
> and I have used it for choking.  I’ve attached a link for a U-tube that I
> found.  I don’t do the second and third steps.  We also use a fist right in
> the V of the ribs pushing upwards rather than the open hand.  One of my
> favorite things to do with the new attendants is to have them learn to do a
> quad cough, and then when they take a CPR first aid ask the instructor how
> they would take care of a quad in a power wheelchair that was choking.  I
> know, not nice, but it’s fun.  
>
> Take care of yourself, you’re the only one you have.
>
> Joan in Reno where we have finally broken the 57 day over 90°weather
> streak.
>
> https://www.youtube.com/watch?v=EfR3KF8mYhw
>
>
>
> *From:* Greg 
> *Sent:* Friday, August 24, 2018 8:35 PM
> *To:* quad-list@eskimo.com
> *Subject:* [QUAD-L] choking
>
>
>
> After all things that happened health wise after my chair tipped.
> Last week I was eating cornbread, went to take a bite and inhaled a big
> piece. It was stuck in my throat, I could not breath at all. Luckily others
> were here. They could not get their arms around me and the back of my
> chair. But enough pounding on me got it out. Scary stuff. My old hospital
> room mate and friend passed away just like that. A bad few months I've had.
> Greg
>

Re: [QUAD-L] Elbows

[Dana Wray]

 The best answer for padding  for your armrest is ordering a neck pillow
from bed Bath and beyond that is Tempur-pedic. You can cut them in half and
put one on each side of your chair. I always buy two so I can use the
covers of the pillow and  I attach with hair ties. Dana

On Tue, Jun 26, 2018 at 3:59 PM Greg  wrote:

> My elbows were so bad, dried, cracked, bleeding. I finely found some good
> armrest covers. My elbows are still dry, but lots better.
>
>
> https://www.amazon.com/gp/product/B0771S6CMB/ref=oh_aui_detailpage_o03_s00?ie=UTF8=1
>
>
>
> Greg
>

Re: [QUAD-L] Elbows

[Dana Wray]

 I also get a Tempur-pedic neck pillow and cut it in half, cover it with a
covering that comes with it and place on my armrest to prevent pressure. It
works for me and it also helps you to stay straight or in your chair.
Dana 43 years post 64

On Sun, Mar 18, 2018 at 1:59 AM Dana Wray <daano...@gmail.com> wrote:

>  Hi Greg,
> I found a way to solve that problem. They are hard to find, But look for
> Terry cloth angle socks. Cut off the toes  and place on your hands  after
> you cut out a spot for your thumb. Put another one on your elbow and it
> helps prevent red marks on your bony  areas.
> Thank you, Dana
> On Wed, Mar 7, 2018 at 7:19 PM Greg <g...@eskimo.com> wrote:
>
>> My elbows are always dried and sometimes split.
>> Last night my shirt had a 3 inch blood stain. I sometimes rest my elbow
>> on my armrest, but not much pressure.
>> No idea how I'm getting these sores.
>>
>> Greg
>>
>

Re: [QUAD-L] Elbows

[Dana Wray]

 Hi Greg,
I found a way to solve that problem. They are hard to find, But look for
Terry cloth angle socks. Cut off the toes  and place on your hands  after
you cut out a spot for your thumb. Put another one on your elbow and it
helps prevent red marks on your bony  areas.
Thank you, Dana
On Wed, Mar 7, 2018 at 7:19 PM Greg  wrote:

> My elbows are always dried and sometimes split.
> Last night my shirt had a 3 inch blood stain. I sometimes rest my elbow on
> my armrest, but not much pressure.
> No idea how I'm getting these sores.
>
> Greg
>

Re: [QUAD-L] FDA warns azithromycin "Z-pack" antibiotics could lead to deadly heart rhythms for some - CBS News

[Dana Wray]

 Thank you so much for the information Jim.
Dana

On Fri, Mar 16, 2018 at 1:37 AM Jim Lubin  wrote:

>
> https://www.cbsnews.com/news/fda-warns-azithromycin-z-pack-antibiotics-could-lead-to-deadly-heart-rhythms-for-some/
>

[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.


Unsubscribe  | Update
 | Privacy Policy
 | Donate

*Easterseals*
141 W Jackson Blvd, Suite 1400A, Chicago, IL 60604 | 800-221-6827
 (toll-free)
Easterseals and its affiliate organizations are 501(c)(3) nonprofit
organizations.

If you no longer wish to receive e-mail from us, please click here
.

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] 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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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 

Re: [QUAD-L] Low Air Loss Mattress Question

[Dana Wray]

Nan,
I wish I knew solution to your problem. I received
my mattress, when I was on Blue Cross Blue Shield, not Medicare. That was
about 10 years ago. I don't know if another way to get a special low air
loss mattress without a sore. They do not want to prevent sores. I had a
friend on the list that died as a result of not having a proper mattress. I
lost contact when she went to a nursing home. I found out later that she
had died on Facebook through her son. She died because of the system. There
was another quadriplegic I knew that died , because the system. They were
both on Missouri Medicaid. I was able to meet one as a peer counselor. The
other friend, I corresponded with through the telephone and email. Both
very dear. Inadequate in-home care. Does anyone know of any other
situations like this?

Nan, It seems like you should qualify for another low air loss bed, because
of your sore issues. It has proven without the mattress he required
hospitalizations and wound treatment which is much more expensive. I needed
a Hoyer lift and Medicaid would not pay for one. I kept calling the medical
store to try to get one. They gave me one someone had traded in on a new
one. It is old but it does the trick. More sturdy than new ones.

Dana

On Wed, Oct 4, 2017 at 2:22 PM, Dave Krehbiel 
wrote:

> I have the same style mattress. I've had very good luck with it.
>
>
>
> I had a similar problem at one point. There is a zipper down the side of
> the mattress. If you unzip it, you'll find a collection of tubing which
> runs from the air pump to the various cells in your mattress. It is
> possible that one of the hoses has come loose.
>
>
>
> ( The air pump is connected to two sets of tubes. it alternates between
> inflating one set, and then the other set.)
>
>
>
> If you can find a loose connection, just push the hose back in, and that
> might solve your problem.
>
>
>
> Good luck,
>
>
>
> Dave Krehbiel
>
> Olney, MD
>
>
>
>
>
> *From:* Nan [mailto:nlg52...@yahoo.com]
> *Sent:* Wednesday, October 4, 2017 2:29 PM
> *To:* quad-list@eskimo.com
> *Subject:* [QUAD-L] Low Air Loss Mattress Question
>
>
>
> I currently have a Drive Medical Lateral Rotation Mattress with on Demand
> Low Air Loss 10" (https://www.4mdmedical.com/catalog/product/view/id/
> 349332/?CAWELAID=12014131056386_source=criteo).  I do not use the
> lateral rotation,.  My mattress is not working properly - the right side
> will not stay inflated, so the motor is running constantly.  It tips me
> down so much that I have to use a standard pillow on that side negating the
> benefit to my skin.  This mattress has worked so well for me - getting me
> through a pressure ulcer, a flap, recovery and keeping my skin in amazing
> shape since last October.  I think it is time to replace this mattress.
> So, I have a few questions:
>
> 1. For those of you who use a low air loss mattress - what kind do you
> have?  Will it last more than 2 years?  Is it comfortable?  Is it good for
> your skin?
>
> 2. Does anyone know where I might find someone to repair my pump?  I'm on
> Medicare now and they won't touch this bed because it was purchased before
> I turned 65. They also say I must have a stage 4 pressure ulcer to qualify
> for a replacement.  Lincare, the people who provided the bed have no record
> of my mattress, so as far as they're concerned, it doesn't exist - they
> hung up on me the last time I called.
>
> 3. I'm on SSI, so money is an issue.  Does anyone know of any grants, etc.
> that might help me get a new mattess?
>
>
>
> I'd appreciate any input.
>
>
>
> Thanks all!
>
>
> 
>  Virus-free.
> www.avast.com
> 
> <#m_-5309448360025969546_DAB4FAD8-2DD7-40BB-A1B8-4E2AA1F9FDF2>
>

Re: [QUAD-L] Broken leg..

[Dana Wray]

I broke my leg about 10 years ago. I have osteoporosis and I went to 3
different doctors and none of them would do anything, not even a boot. I
was so upset because I had just got insurance that would allow me to get a
standing. 5 1/2 years ago I had foot surgery for footdrop. They left the
fixator on for 7 days without checking and I got gangrene. I had to be on a
special antibiotic for one month. They let me have a hospital and gave be a
wound VAC for 2 months until I could get the skin graft. Then a year later
I foot broke, because the skin fixator was taken off too soon because of
the doctors neglect. They couldn't do anything because of my osteoporosis.
I did not realize that with osteoporosis surgery will not work.. Has anyone
else run into that experience?
Dana 4-5 complete quadriplegic, 43 years. I get yearly injections is called
IV therapy reclast up to six years .

On Fri, Sep 22, 2017 at 4:01 PM, Nichole Rohling 
wrote:

> More than once. We used a boot and even then had to be sure and check for
> pressure sores. My dr absolutely would not do a hard cast.
>
>
>
> Nicki
>
>
>
> *From:* BeeJ [mailto:mrbeej...@gmail.com]
> *Sent:* Thursday, September 21, 2017 7:04 PM
> *To:* quad-list@eskimo.com
> *Subject:* [QUAD-L] Broken leg..
>
>
>
> So I broke my leg Last Friday Night turning around in the dark with my
> power chair. The toe of my boot caught on my bed and I twisted it and heard
> a pop. So now I have a cast up to my knee that I can't feel. Anyone on here
> have any experience dealing with a broken bone below your level of injury?
> I'm a little worried about what's going on inside that cast.
>
>
>
> -Bj
>

Re: [QUAD-L] Help for a urinary tract infection

[Dana Wray]

Please call your Senators at the Congressional
hotline. Congressional Switchboard
866-922-4970



The U.S. Senate is one or two votes away from approving new health care
legislation that would cut and cap Medicaid and put at risk the essential
health benefits and pre-existing condition protections that are so
important to individuals with disabilities and their families. This vote
will occur the week of September 25th.

TAKE ACTION NOW! Tell your Senators to protect Medicaid home and
community-based services for children and adults with disabilities by
rejecting proposals that cut and cap Medicaid!

Please oppose the Graham-Cassidy amendment. The legislation includes
harmful provisions that would cap and cut Medicaid services for individuals
with disabilities and create uncertainty around essential health benefits
and other protections currently available to Americans with disabilities
and other pre-existing conditions.


On Sat, Sep 9, 2017 at 9:50 AM, Dave Krehbiel 
wrote:

> Regarding the cloudiness: my urine used to be cloudy. At the time, I was
> asking my aides to add lemon juice to my water, hoping that it would
> decrease UTIs and help me drink more water. But then I read on this forum
> that lemon juice can result in cloudy urine. I discontinued the lemons, and
> the cloudiness went away.
>
>
>
> Regarding UTIs, I have heard that cranberry juice is a good thing. Good
> luck.
>
>
>
> *From:* Ron M Pracht [mailto:qua...@yahoo.com]
> *Sent:* Saturday, September 9, 2017 4:39 AM
> *To:* Quad-list Post
> *Subject:* [QUAD-L] Help for a urinary tract infection
>
>
>
> I currently have a uti. My urine is very cloudy when I look at it but my
> temp is only 99.1. Ive had much worse in my quad years but still I don't
> think it will go away on its own. Any suggestions on how to possibly get
> rid of this without a doc visit and cipro? I cant really drink tons at once
> because I straight cathe and leak a bit( that's another issue). Any insight
> would be appreciated, cant get to doc until next week.
>
>
>
> Ron c7 quad since 98
>
>
> 
>  Virus-free.
> www.avast.com
> 
> <#m_3538868428579867530_DAB4FAD8-2DD7-40BB-A1B8-4E2AA1F9FDF2>
>

Re: [QUAD-L] New Chair Options

[Dana Wray]

 Hi Bobbie,
 I was supposed to start my wheelchair evaluation this month but when I
called they are booked up until October.
  I have a Permoble  so I will probably stick with this,   Unless I hear
about a better  wheelchair. .

   July 26 is my 43rd anniversary
Dana C 4-5 complete quadriplegic.

We have to get a new wheelchair bracket with a chair

On Tue, Jul 25, 2017 at 4:53 PM Bobbie Humphreys 
wrote:

> When I got a new chair my van conversion company charged me $800 to put a
> ezlock bracket on the bottom of my new Quantum
> Bobbie
>
> "Be the change you want to see in the world". Gandhi
>
> On Jul 25, 2017, at 4:15 PM, Nichole Rohling 
> wrote:
>
> Danny,
>
>
>
> Do you drive and use the EZ-Lock to lock into your van? If so did you have
> to move driving equipment and EZ-Lock to compensate changing from an
> Invacare to the Quantum?
>
>
>
> My Invacare base is 33” and the Quantum is 36” so this is a concern
> especially because it will be out of pocket to add new EZ-Lock to chair and
> if I have to make changes in my van the expense will be greater.
>
>
>
> Nicki
>
>
>
> *From:* Danny Hearn [mailto:ddh...@sbcglobal.net ]
> *Sent:* Monday, July 10, 2017 1:59 PM
> *To:* Nichole Rohling; quad-list@eskimo.com
> *Subject:* Re: [QUAD-L] New Chair Options
>
>
>
> Nicki...they are solid and I go everywhere and they show zero signs  of
> any wear at all...I'm am very impressed by that, they are so much better
> than the  invacare tires ever were. The ride is a bit better or smoother
> also, although my last Invacare is 7 years old so they may have made
> improvements also.  Dan**
>
>
>
> On Monday, July 10, 2017 1:34 PM, Nichole Rohling 
> wrote:
>
>
>
> Thanks Danny
>
>
>
> I am pretty positive I want to stick with rear wheel drive. Are the tires
> on your Quantum solid or air filled?
>
>
>
> Nicki
>
>
>
> *From:* Danny Hearn [mailto:ddh...@sbcglobal.net ]
> *Sent:* Monday, July 10, 2017 1:13 PM
> *To:* Nichole Rohling; quad-list@eskimo.com
> *Subject:* Re: [QUAD-L] New Chair Options
>
>
>
> I got the Quantum Rival a few months back with the speed upgrade, I think
> it goes about 7 mph or sowhich is pretty quick for outdoors, It took a
> bit of getting used to it  because like you I had been in Invacare Arrows
> for the past 14 years, all my chairs have been REAR wheel drive and that
> works great for me and fit into my 1995 chevy astro mini van. Many folks do
> not like the rear wheel indoors because it is not good for tight turns like
> the mid-wheels can do. My area is set up for outdoors...it has trails and
> park area's near me, so rear wheel is great for me. I suggest trying a few
> like you said you are going to do. I do love the Quick Change buttons on
> this Quantum that can switch from tilt/leg lift back to drive very fast by
> a button on either side of the control. good, luck, Dan H***
>
>
>
> On Monday, July 10, 2017 12:39 PM, Nichole Rohling <
> zoocr...@windstream.net> wrote:
>
>
>
> I’m getting my 3rd chair in 19 years. I have had the Invacare Action
> Arrow Storm for all 19 years. Invacare got in trouble with the FDA and are
> under a consent decree with them. My DME is really trying to steer me away
> from getting an Invacare chair. It would be a Torque 3. I am suppose to be
> testing it as well as a Permobil C350 and a Quantum Rival. The provider
> brought out the Quantum on Friday and it has a plate footrest (I have
> always had 2 footrest which allows me to straddle table posts at
> restaurants) I don’t even think my feet would stay on a center mounted foot
> plate. They were suppose to bring the Invacare first and the employee
> agreed he didn’t think my feet would stay on the plate. He even told me
> that the motors in the Rival go out but I didn’t hear that from him. The
> DME supplier is trying to get footrests for the demo chairs but said they
> can only get 1 side for the Invacare.
>
>
>
> Would love input on any of these chairs.
>
>
>
> Nicki
>
>
>
>
>
>

[QUAD-L] Medicaid cuts and caps to the states: Please call your senators

[Dana Wray]

Please call your Senators ASAP through the Congressional switchboard and
write them on their websites as this will stop Home and Community Based
Services. 866-922-4970
 1) Capping Medicaid means states get a set amount per enrollee instead of
being reimbursed for the actual cost to care for that individual. 2) Under
a per capita cap, states will not receive extra federal funds to cover an
individual's increasing care -- due to deteriorating health or changes in a
chronic condition. 3) Capping Medicaid will result in optional home and
community-based services for people with disabilities being CUT, RESTRICTED
or ELIMINATED, according to the Congressional Budget Office. 4) Capping
Medicaid is a DRASTIC CUT and COST-SHIFT to states -- who are already
strapped for cash and will have to: CUT Medicaid Provider rates; RESTRICT
eligibility for essential Medicaid care and services; and/or ELIMINATE
optional home and community-based services -- such as home health,
attendance care, and out-patient therapies -- that are not required
services under Medicaid. 5) Further cuts to provider rates will further
RESTRICT AVAILABILITY or QUALITY of Medicaid services. Past provider cuts
have resulted in programs closing and services being restricted. 6) Health
care reform should DO NO HARM to people with disabilities. 7) Capping and
cutting Medicaid services -- as proposed in the Better Care Reconciliation
Act -- HURTS not HELPS individuals with disabilities.

[QUAD-L] Continue advocacy about Medicaid cuts and caps to your senators

[Dana Wray]

Thank you for taking action to protect health care for people with
disabilities!

You probably already know that the Senate postponed the vote on their
health care bill. This victory may be temporary, as we expect another
version of the bill to come before the Senate sometime in July.

Here's a short video that reaffirms why YOUR ON-GOING ADVOCACY IS SO
IMPORTANT: https://youtu.be/murpMdABoRg
.

* 
*Thank
you,

Katy Beh Neas
Executive Vice President, Public Affairs


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 | Privacy Policy
 | Donate


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.


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Try the new Yahoo Mail

[QUAD-L] Medicaid Cuts and Medicaid Caps-Call your senators

[Dana Wray]

Call Jerry Moran (202) 224-6521
Pat Robertson (202) 224-6521
Congressional switchboard voice-activated 1. It will ask your state 2. It
will lash your ZIP Code 3. It will ask you if you want to call your
Senators and representative in your state. 866-922-4970



“ Hi, my name is [NAME] and I'm a constituent from [CITY, ZIP].
I'm calling to oppose cuts to Medicaid that will affect people with
disabilities. Capping Medicaid funding will be DEVASTATING for individuals
with disabilities who receive their care and supports through Medicaid.
Children and adults with disabilities rely on Medicaid services for their
health, well-being, and independence. Medicaid helps a child with cerebral
palsy access physical therapy; a student with autism receive behavioral
health services; a young adult with a spinal cord injury receive personal
assistance services to get to his job; and a vulnerable senior access home
health services.
Please oppose proposals like block grants and per capita caps that restrict
the federal level of support to state Medicaid programs.
Thank you for your consideration. ”

[QUAD-L] Urgent: contact your Senators to not cut Medicaid and no Medicaid caps through the American health care act

[Dana Wray]

We need your continued support and advocacy! The U.S. Senate is planning to
act quickly on changes to health care that could dramatically limit access
to Medicaid services for people with disabilities.

The Senate is working behind closed doors on its version of the American
Health Care Act (ACHA) and planning to introduce their bill the week of
June 26th. Easterseals opposed
 the
House-passed AHCA for its cuts to Medicaid, which helps individuals with
disabilities maintain their health and independence. *The huge cuts in
Medicaid must be stopped in the U.S. Senate*!


*Take Action NOW: Tell your Senators, "No Medicaid Cuts! No Medicaid Caps!"
*

[QUAD-L] Please call Senators about Medicaid cuts 866-922-4970

[Dana Wray]

Senators:



Reject the ACHA-and its cuts to Medicaid services that empower people with
disabilities to live



independently.



I have high level spinal cord injury and it will be 43 years in July. I
will not be able to live



independently if these budget cuts to Medicaid happen through the AGHA.

Robert at Sen. Moran office



Congressional switchboard message with Roberts office

they said to call back on Thursday Sen. Roberts said it would be voted on
at the end of the month and



they did not know if Roberts was for or against.





There are only two more days to ask your Representative to sign on to the
House letter being sent to HHS Secretary Price and CMS Administrator Verma.
The letter asks for needed improvements in Medicare's DME policies and to
stop inappropriate payment cuts to CRT Wheelchair Accessories.



Check the list of current signers here to see if your Representative has
already signed on. If they haven't you can send a pre-written email via the
HH Homecare legislative action center here.  Your message will help
reinforce the urgent need to stop the July 1 payment cuts to CRT wheelchair
accessories. The opportunity for new signatures ends this Friday.


I called my representative today because he had not signed on. I explained.
I asked why he had not signed to stop these cuts for wheelchair accessories.

[QUAD-L] Contact the Congressional switchboard 866-922-4970 about wheelchair accessory cuts on June 30

[Dana Wray]

A pre-written email is available to send to your Senators and
Representative at www.protectmymobility.org.  Be sure to contact your
Member's offices this week and share the link with others so that they can
reach out too.  Every message counts!

Legislative intervention can take the form of cosponsoring and passing H.R.
1361 and S. 486.  Or by taking some other legislative action.

You can also contact HHS Secretary Price and CMS Administrator Verma to ask
they quickly make the needed policy correction to stop these inappropriate
cuts.  This is within their authority and would avoid the necessity of
legislation.

[QUAD-L] Legislative cuts regarding accessories and Medicaid cuts that allow independent living

[Dana Wray]

There are only two more days to ask your Representative to sign on to the
House letter being sent to HHS Secretary Price and CMS Administrator Verma.
The letter asks for needed improvements in Medicare's DME policies and to
stop inappropriate payment cuts to CRT Wheelchair Accessories.

Check the list of current signers here to see if your Representative has
already signed on. If they haven't you can send a pre-written email via the
HH Homecare legislative action center here.  Your message will help
reinforce the urgent need to stop the July 1 payment cuts to CRT wheelchair
accessories. The opportunity for new signatures ends this Friday.


Please let me know what your Representatives and Senators are sensate about
these 2 important pieces of legislation that will affect independent living
for persons with disabilities.

Thank you,
Dana

[QUAD-L] Re: CRT Separate Benefit Category Legislation Reintroduced

[Dana Wray]

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January 31, 2017

CRT Stakeholders, Great news from Congress for people with disabilities who 
rely on Complex Rehab Technology!  CRT Champions Representatives Jim 
Sensenbrenner (R-WI) and Joe Crowley (D-NY) have joined together to reintroduce 
the "Ensuring Access to Quality Complex Rehabilitation Technology Act of 2017" 
in the House of Representatives. The new bill number is H.R. 750.  
 In his announcement (see here), Representative Sensenbrenner stated "As a 
leader in the fight for the rights of the disabled, I want to ensure all 
Americans have access to the tools needed to live each day to the fullest. 
Disabled Americans should not be denied rehabilitation or medical equipment 
that can enable them to live and work freely and independently."  

[QUAD-L] How do you add your picture to your email address

[Dana Wray]

 I have noticed that some of you have your pictures next your email
address. I can't figure out how to do  I would appreciate it if someone
could assist me.

Yes the new Medicare  and Medicaid rolls are scary. Let's keep each other
updated.

Dana C 4-5, 42 years post. Prairie Village, Kansas.

Are there any other members in Kansas?

[QUAD-L] Re: [QUAD-L] Re: [QUAD-L] Re: [QUAD-L] alternating pressure air mattress or pad needed… What do you recommend?

[Dana Wray]

On Wed, Jan 11, 2017 at 8:20 PM Jim Lubin  wrote:

> here is an option for a full mattress replacement if you want more than
> just an overlay.
>
> https://www.amazon.com/gp/product/B002VWKO9W/
>
>
>
> On Wed, Jan 11, 2017 at 3:57 PM, Lori Michaelson 
> wrote:
>
>
> https://www.amazon.com/Drive-Medical-Alternating-Pressure-Variable/dp/B002VWK1BI/ref=pd_sbs_121_5?_encoding=UTF8_rd_i=B002VWK1BI_rd_r=Q99H5APQ9JGXF67YCZSW_rd_w=Pp0AD_rd_wg=EEuMA=1=Q99H5APQ9JGXF67YCZSW
>
> It works extremely well.
>
> On Wed, Jan 11, 2017 at 4:30 PM, DEBRA DEW  wrote:
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> I require aan an alternating pressure mattress or pad very badly. Ones I
> have had that were furnished by the nursing homes I was in had been very
> old and do not shift your weight at all.
>
>
>
>
>
>
>
>
>
>
>
>
> Previously, I have had stage 4 bedsore, and I do not want one back again.
>
>
>
>
>
>
>
> They really do not have enough staff to care for the patients and so I
> need to do something for myself. Florida is not a good state to be a
> quadriplegic in.
>
>
>
>
>
>
>
> Please tell me what you are using satisfactorily.
>
>
>
>
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>
>
> *Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH.
> 9Formerly: Homeschooling mom of 9 and pvt. pilotCurrently: Quadrapeligic
> due to advanced MS and living in a nursing homePhone: 561-588-4333
> <(561)%20588-4333>SC student 20yrs  ROMANS 8:28*
>
> B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> --
> "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] Six month delay on cutting wheelchairs and accessories

[Dana Wray]

Message body

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| December 7, 2016 
 Great news for all CRT stakeholders! This afternoon the Senate passed a 
6-month delay of inappropriate Medicare payment cuts to CRT power wheelchair 
accessories as part of the 21st Century Cures Act. The House of Representatives 
passed the bill last week and it now goes to the President for signing into 
law. The Cures Act also includes Competitive Bidding "rural relief" language 
that will retroactively rescind the broad DME July 1, 2016 Medicare cuts until 
January 1, 2017. Providers will be able to recoup any payment reductions 
incurred for items provided from July 1 to December 31, 2016. The rescinded 
payment cuts will go back into effect on January 1, 2017. Thanks to everyone 
who worked so hard this year reaching out to Congress asking for their help! 
While this is not a permanent solution, it protects access for another 6 months 
and allows us needed time to work with the new Congress and Administration.
We will start 2017 with Congressional CRT support at its highest level ever. 
This provides a solid foundation to get a permanent stop to inappropriate 
Competitive Bid payment cuts to CRT and to establish a Separate CRT Benefit 
Category.
 We sincerely thank all the Members of Congress for their support, particularly 
our CRT champions.  These include Senators Portman (R-OH), Casey (D-PA), 
Cochran (R-MS), and Schumer (D-NY) along with Representatives Zeldin (R-NY), 
Sensenbrenner (R-WI), Crowley (D-NY), Brady (R-TX), Tiberi (R-OH), Kelly 
(R-PA), Nunes (R-CA), Price (R-GA), Loebsack (D-IA), Larson (D-CT), and DeGette 
(D-CO). Please email your Members and thank them for their support. Let them 
know we look forward to working with them next year to continue to protect 
access for people with disabilities. CRT stakeholders are proving that while it 
takes time to get the attention of Congress, if you have a good plan, good 
advocates, and polite persistence progress can be made. More details will 
follow, but for now thanks again to all the individuals and organizations who 
made this happen! |


| Regards,
Don

Donald E. ClaybackExecutive Director | NCART
Office 716-839-9728 | Cell 716-913-4754
dclayb...@ncart.us |www.ncart.us
P.S. If you know of other CRT stakeholders who would like to receive these 
types of updates please have them sign up at the NCART website. 
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| See what's happening on our social media sites! 
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| National Coalition for Assistive and Rehab Technology, 54 Towhee Court, East 
Amherst, NY 14051 |
| 
| SafeUnsubscribe™ daanoo2...@yahoo.com |


| Update Profile | About our service provider |


| Sent by dclayb...@ncart.us in collaboration with |

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[QUAD-L] Re: House Passes 21st Century Cures Act

[Dana Wray]

The toll-free switchboard number is: 866-922-4970

  Subject: House Passes 21st Century Cures Act
   
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December 1, 2016

Good news! Last night the House of Representatives passed the 21st Century 
Cures Act, which includes our 6-month CRT power wheelchair accessories delay, 
by a vote of 392-26. This shows overwhelming support in the House and sends a 
strong message to the Senate. The Senate will now take up the bill, likely next 
week.  It may encounter some resistance there, but signs are positive for 
passage. In the meantime, reaching out to your Senators and encouraging them to 
vote yes will be helpful.  The NCART Board of Directors will be in D.C. next 
week carrying that message. We are halfway there.  Let's keep the momentum 
going and we will 

Re: [QUAD-L] Redoing my ileoconduit on Wednesday

[Dana Wray]

Thank you for your love and prayers as I really appreciate your warm
thoughts. We need all the strength we can get from the Lord and through our
friends prayers. Dana

On Sun, Sep 4, 2016 at 4:18 PM Bryce Willis <lwillis82...@msn.com> wrote:

> Wow. Helluva situation, Dana. My love and prayers go you way. God bless
> you and stay strong! Larry Willis, an old crippled turd with good
> intentions.
>
> Sent from my iPad
>
> Begin forwarded message:
>
> *Resent-From:* <quad-list@eskimo.com>
> *From:* Danny Hearn <ddh...@sbcglobal.net>
> *Date:* September 4, 2016 at 4:54:17 PM EDT
> *To:* Dana Wray <daano...@gmail.com>,  "<quad-list@eskimo.com>" <
> quad-list@eskimo.com>
> *Subject:* *Re: [QUAD-L] Redoing my ileoconduit on Wednesday*
> *Reply-To:* Danny Hearn <ddh...@sbcglobal.net>
>
> Wow, Dana you are facing quite a bit right now, we will be praying for the
> right Doctor to perform exactly what is needed and for you to have the
> strength to pull through it all, You are a Sweet Woman, may the grace and
> love of God be with you.   Dan H**
>
>
> On Sunday, September 4, 2016 5:30 AM, Dana Wray <daano...@gmail.com>
> wrote:
>
>
> I have been suffering numerous UTI for the last year and had a number of
> testing. I was just told a week and a half ago that my ileoconduit was no
> longer working and I needed a new one. I didn't realize that urologist I
> had been seeing realized what I was facing. He had given me 4 lithotripsy
> to break kidney stones. The urologist gave me three doctors. I had to look
> up the numbers and call each office. None of the three doctors could do
> that kind of surgery. One of the office managers gave me the name of
> somebody that he thought might do this type of surgery. I had been in the
> hospital for two weeks with sepsis and another urinary tract. The doctor
> said that he had performed over 100 of the surgeries. Two out of three
> people had complications and he had lost some of his patients,
>I don't have any other option. Has anyone ever heard problems on your
> ileoconduit no longer function. Dr. Wyre said that in normal ileoconduit
> will last at the most 40 years. I hope I will hear from someone. I may be
> looking at the wrong words but I'm not really finding documentation about
> the surgery. He will have to cut another 6 inches off my small intestine to
> make a stoma. I don't know the ureters are working properly. I didn't ask
> that question. I had just completed 14 days using a central line after I
> got out of the hospital and I'd already developed another infection. So
> please provide any information.
>   I don't think I have any option, but I'm trying to prepare myself. My
> disability C4-5 quadriplegic complete, 42 years post. Ileoconduit was
> performed after bladder cancer 86. I just had 10 inches taken out of my
> large intestine: in November 2015. Seven lymph were remitted that were
> cancerous. Three were not. I took chemotherapy for a couple months but it
> just cause bleeding. So it was no longer a candidate. They are going to
> peat scan after my surgery,the surgery is going to be 10 hours long at KU
> hospital on 9/7/16.
> There is also something on my ovaries and a couple modules on my lungs. I
> wanted to share this with all of my Quad friends, if anyone can offer any
> information to my medical situation, please respond. It will be hard for me
> to check my messages or the on my computer to read about other persons with
> spinal cord injury with the same problem. Thank you for any input you can
> provide.
>
>
>
>
>

[QUAD-L] Redoing my ileoconduit on Wednesday

[Dana Wray]

I have been suffering numerous UTI for the last year and had a number of
testing. I was just told a week and a half ago that my ileoconduit was no
longer working and I needed a new one. I didn't realize that urologist I
had been seeing realized what I was facing. He had given me 4 lithotripsy
to break kidney stones. The urologist gave me three doctors. I had to look
up the numbers and call each office. None of the three doctors could do
that kind of surgery. One of the office managers gave me the name of
somebody that he thought might do this type of surgery. I had been in the
hospital for two weeks with sepsis and another urinary tract. The doctor
said that he had performed over 100 of the surgeries. Two out of three
people had complications and he had lost some of his patients,
   I don't have any other option. Has anyone ever heard problems on your
ileoconduit no longer function. Dr. Wyre said that in normal ileoconduit
will last at the most 40 years. I hope I will hear from someone. I may be
looking at the wrong words but I'm not really finding documentation about
the surgery. He will have to cut another 6 inches off my small intestine to
make a stoma. I don't know the ureters are working properly. I didn't ask
that question. I had just completed 14 days using a central line after I
got out of the hospital and I'd already developed another infection. So
please provide any information.
  I don't think I have any option, but I'm trying to prepare myself. My
disability C4-5 quadriplegic complete, 42 years post. Ileoconduit was
performed after bladder cancer 86. I just had 10 inches taken out of my
large intestine: in November 2015. Seven lymph were remitted that were
cancerous. Three were not. I took chemotherapy for a couple months but it
just cause bleeding. So it was no longer a candidate. They are going to
peat scan after my surgery,the surgery is going to be 10 hours long at KU
hospital on 9/7/16.
There is also something on my ovaries and a couple modules on my lungs. I
wanted to share this with all of my Quad friends, if anyone can offer any
information to my medical situation, please respond. It will be hard for me
to check my messages or the on my computer to read about other persons with
spinal cord injury with the same problem. Thank you for any input you can
provide.

[QUAD-L] Fw: Wheelchair Accessories Legislation Gains Support

[Dana Wray]

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#yiv5120397580 Rep. Zeldin Holds Press Conference
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August 31, 2016
Wheelchair Accessories Legislation Gains Support 

CRT Stakeholders and Friends,

Yesterday Representative Lee Zeldin (R-NY), the House sponsor of our complex 
wheelchair accessories bill H.R.3229, held a press conference at The Children's 
Center at United Cerebral Palsy (UCP) of Long Island, a school for students 
with developmental disabilities. The purpose of the press conference was to 
call for Congress to pass H.R.3229 this year, legislation that he labeled as a 
"must pass" bill to protect access for people with disabilities.  Other CRT 
stakeholders in attendance also spoke in support. These included Stephen 
Friedman, President and CEO of UCP of Long Island; Rolf Walter, a 50 year 
client of UCP 

Re: [QUAD-L] Night

[Dana Wray]

CMS Releases July 1 Medicare DME Fee Schedules with Major Cuts

   - NCART  
   -
   - Today at 6:34 AM

To

   - daanoo2...@yahoo.com

Message body


CMS Releases July 1 Medicare DME Fee Schedules with Major Cuts

June 24, 2016

CRT Stakeholders and Friends,

Late yesterday afternoon CMS finally released the July 1 Medicare DME Fee
Schedules. A mere 5 business days before the reduced payment amounts go
into effect!

On Wed, Jun 22, 2016 at 12:31 AM Gail Holmes  wrote:

> Lol! :-)  nothing like some good ole comic relief!
>
> Sent from my iPhone
>
> On Jun 21, 2016, at 5:22 PM, Eric Olson  wrote:
>
> "stop in the name of the law!"
>
> On 6/20/2016 10:53 PM, greg wrote:
>
> My ECU fan receiver in the walls ceiling fan burned up. So I use a free
> standing one with remote. Now at night I look like Inspector Gadget.
>
> My ECU. I have my bed's remote on it's cord laying across my stomach. I
> connected the fan's remote to the bed's cord with it. I use a clip on my
> blanket to keep 1 side up high. I have a string clipped to my blanket tied
> to a can with pennies in it. I jerk it and the sound makes the dog stop
> barking. My water bottle.
>
> I got it all placed just so, so it doesn't get in my way.
>
> My main issue is if I uncover my arm, I often can't get it covered back
> up. And use mot of it with my mouth.
>
> Greg
>
>
>
>
> 
>  Virus-free.
> www.avast.com
> 
>
>

[QUAD-L] Re: Action Needed: Verify your signature

[Dana Wray]

Sent from my iPhone

> On Sep 28, 2015, at 2:41 PM, We the People: Your Voice in Our Government 
>  wrote:
> 
> 
>  
> 
> Thank you for submitting your signature to the We the People petition "Stop 
> Medicare from Making Inappropriate Cuts to Complex Wheelchair Accessories" 
> via WhiteHouse.gov.
> 
> By confirming your signature below, you are participating in the White 
> House's We the People online petitions platform, and you agree to abide by 
> the We the People Terms of Participation and Moderation Policy provided below.
> 
> Confirm your signature by clicking here.
> 
> Terms of Participation, Moderation Policy.
> 
>  
> Petition Title: Stop Medicare from Making Inappropriate Cuts to Complex 
> Wheelchair Accessories
> 
> Despite past legislation & recent congressional action, Medicare is 
> diminishing reimbursement rates for complex rehab wheelchair accessories & 
> seating systems in January 2016. This will have a devastating impact on 
> severely disabled people across the U.S.
> 
> People with significant disabilities such as ALS, cerebral palsy, multiple 
> sclerosis, muscular dystrophy & spinal cord injuries rely on these items to 
> meet their medical & independence needs.
> 
> No clinical or medical evidence has been provided as to why these changes are 
> necessary. If this policy is not rescinded, major decreases in availability 
> (or outright elimination) of individually configured complex rehab wheelchair 
> systems will occur.
> 
> To protect access for people with severe disabilities, this policy must be 
> rescinded.
> 
>  
> 
> View the White House Privacy Policy.
> 
> Sign up for email updates from President Obama and the White House on this 
> and other important issues.
> 
>  
> You're receiving this email from petitions.whitehouse.gov because the address 
> daanoo2...@yahoo.com was entered to sign a We the People petition. 
> Having trouble? Let us know here.
> 
>  

Re: [QUAD-L] inhalers?

[Dana Wray]

2-3 breathing treatment each night and morning.. It helps the mucus, and I am 
able to get it and Breezemore comfortably. I have a Trach button so sometimes 
that causes mucous. I seem to get congested every time I go outside. I must 
always have a suction machine with me.Dana

Sent from my iPhone

 On Aug 22, 2014, at 6:43 PM, wheelch...@aol.com wrote:
 
 Lung medicine does not replace lung therapy.   Lung therapy can reduce or 
 eliminate the need for lung medicine.  Some meds are designed for short term 
 therapy and other meds are for long term/ continuous use.  Ask your doctor or 
 respiratory therapist about long term use and addiction to the meds. This way 
 you will know what you are getting in to.
 Best Wishes
  
 In a message dated 8/22/2014 3:10:34 P.M. Central Daylight Time, 
 g...@eskimo.com writes:
 I saw a lung doctor yesterday,  was tested at 30% lung capacity.
 He wants me to try some Inhaler and a Nebulizer? or something like that.
 My lungs don't work because of lack of muscle, not mucus stuff.
 Do you think anything like that ill help?
  
 Anyone else try those things?
 Greg

Re: [QUAD-L] Rehabilitation doctor

[Dana Wray]

 I think your father needs a Second opinion with a new doctor and a new surgeon.
Dana

Sent from my iPhone

 On Aug 18, 2014, at 4:19 PM, Quadius quad...@gmail.com wrote:
 
 I hope someone can give me a hand here. My dad had spinal cord surgery, they 
 went in and cleaned up and putting hard were everywhere from C1 to C6, during 
 December of last year. He went through the whole process and did some 
 rehabilitation, but here we are in August and he is getting worse as far as 
 walking and being able to stand correctly. He is starting to look like a 
 hunchback when he stands.
 
 When I've asked his wife about more rehab, she tells me he's maxed out on 
 Medicare. Is there anyway I can get him at rehabilitation doctor and possibly 
 some more rehabilitation? His surgeon has pretty much throwing up his hands.
 
 Any help would be appreciated. We're located down here in Largo Florida. 
 Actually I'm up in the north Tampa area. He lives down there.
 Quadius

Re: [QUAD-L] Chair

[Dana Wray]

Hi Ron,
 what a wonderful thing for him to do. I'm glad he noticed you in your manual 
chair.
Dana

Sent from my iPhone

 On Aug 8, 2014, at 2:07 PM, RONALD L PRACHT r.pra...@sbcglobal.net wrote:
 
 Somebody saw me wheeling my manual wheelchair a few yrs back and I got a call 
 from the Gywnn- Steinbreinner Yankees drag race team. Darryl Gywnn got 
 paralyzed in a big tire drag race and became a c5 quad as well as a dual 
 amputee. He was giving away about a dozen special edition quickie p222 
 wheelchairs and asked if I could use one built for me. I was invited to the 
 race track to receive the chair and meet the whole team as well as Darryl 
 Gwynn. It was special colors with yankee graphics and was the se model. I 
 think it does like 8 miles an hour or a lil more. Not the fastest out there 
 but the thing will climb about anything you tackle.
 
 Ron
 
 
 On Friday, August 8, 2014 1:44 PM, Danny Hearn ddh...@sbcglobal.net wrote:
 
 
 All my chairs have been 7.5 mph, but I read that there were 10mph chairs, 
 can't remember the brand...ask Ron about the paralyzed race car driver that 
 made a few hopped up race chairs, lol--I think Ron won one in a raffle years 
 back. 
 
 
 On Friday, August 8, 2014 1:26 PM, greg g...@eskimo.com wrote:
 
 
 My chair is in the shop again. Tires, tighten up where a few bolts have 
 fallen off, new lateral supports, etc. I asked about motors and motor breaks, 
 my chair rolls pretty easy when in off/stopped position. but he mentioned 
 that's a lot of money for a chair that old. So I put that off for now. My 
 chair is like 11 years old now.
  
 I know Medicare and insurance's don't cover the fast chairs, but anyone know 
 of some faster ones that are covered?
 7.5 is about as fast as I've found.
  
 Thanks, Greg
 
 
 
 

Re: [QUAD-L] Happy hurtday to me

[Dana Wray]

So happy anniversary
I know you have been through a lot as most of us have and you have survive. 
Congratulations on your amazing story and may God bless you.
Dana cervical ; level 4-5, 40 yearsI on July 26/14

Sent from my iPhone

 On Aug 7, 2014, at 4:06 PM, Joan Anglin poaj...@sbcglobal.net wrote:
 
 Well you have touched many people and given lots of good advice, so I think 
 you’ve done a darn good job. Thanks for all the shared stories and advice. 
 Joan
  
 From: Larry Willis [mailto:lwillis82...@gmail.com] 
 Sent: Thursday, August 07, 2014 7:06 AM
 To: quad-list@eskimo.com
 Subject: [QUAD-L] Happy hurtday to me
  
 Hey gang, today is the 43rd anniversary of my life in quadom. 'Twas a 
 Saturday, a warm summer day. A couple of buds and I were at Green River 
 reservoir to camp, swim and scout bikinis. The lake was high a couple of 
 feet. I strolled along the beach on a submerged sidewalk. Finally, I 
 attempted a belly flop off the walk. Instead of flopping, I knifed into the 
 water and my head met the sandy bottom. The door to hell suddenly opened and 
 I have been struggling to close it ever since. I was 19.

Re: [QUAD-L] 17 years.

[Dana Wray]

Congratulations Danny On 17 years. I hope you had a wonderful day doing 
something you enjoy doing to commemorate your survival.
Dana

Sent from my iPhone

 On Aug 3, 2014, at 8:10 PM, Joan Anglin poaj...@sbcglobal.net wrote:
 
 Congratulations, you’re still here and kicking. Here’s to many more.
  
 From: Danny Hearn [mailto:ddh...@sbcglobal.net] 
 Sent: Sunday, August 03, 2014 1:56 PM
 To: quad-list@eskimo.com
 Subject: [QUAD-L] 17 years.
  
 Today makes me 17 years as a quad--car wreck c-6 st. louis, mo. 
 areathey years just keep going by, one day at a time. ;-) Dan H*

Re: [QUAD-L] 48 years

[Dana Wray]

Second that you give us so much information and help congratulations and God 
bless you
Dana

Sent from my iPhone

 On Jul 10, 2014, at 1:22 PM, nichole rohling zoocr...@windstream.net 
 wrote:
 
 Congratulations on 48 years. You’ve given a wealth of info to us!!
  
 Nicki
  
 From: gah17...@aol.com [mailto:gah17...@aol.com] 
 Sent: Thursday, July 10, 2014 12:31 PM
 To: quad-list@eskimo.com
 Subject: [QUAD-L] 48 years
  
 Hello everyone,
  
 July 10, 1966 was one of those hot days in Pennsylvania.  I believe the 
 record high temperature for 1966, was July 3 of 107°.  That week we had many 
 severe storms and to cool off I had plans to accompany my Sunday school 
 teacher in the Susquehanna River.  Upon asking permission from my mother she 
 made the statement I don't trust the river with all the storms, so I will 
 take you someplace safe, a statement I'm sure she relived in her mind many 
 times.
  
 That afternoon I went to a public pool and while swimming someone apparently 
 did a cannonball on my back.  Luckily someone saw me and calls went out to 
 the lifeguard, who just happened to have gone home and ask his girlfriend to 
 sit on the tower.  It really didn't matter, for as it turned out he was not 
 certified.
  
 I spent the next 2 1/2 years in the Etown Crippled Childrens Hospital, nine 
 of those months in isolation due to infections from pressure sores.  There 
 wasn't such a thing as sci rehab at that time.
  
 Well, here I am 48 years later, the last two years being the roughest, but as 
 they say I am still hanging in there, but the rope gets short at times.
  
 Just like the rest of us, I don't know if I will make it to 49, things are 
 going on inside my body, but the doctors just don't know what.
  
 I've had a full life, certainly glad that I did not wait around for a cure.  
 With my anything for a buck mentality I took a correspondence class in 
 electronics, received an associate degree, started a business, built a 
 building for that business and am now retired. Gee, my counselor from 
 vocational rehabilitation said I could never work on electronics with hands 
 that didn't function.  After I was two thirds through the course, the next 
 counselor realized I was serious and the state of Pennsylvania picked up the 
 rest of the tab. 
  
 Now, I am trying to study web site design, but learning something new doesn't 
 come easy at 63.
  
 The almost completed web site for anyone from Pennsylvania that may have 
 spent time at the Elizabethtown State Hospital for crippled children is:
 http://www.elizabethtowncrippledchildrenshospital.com/
  
 I don't know how many years I will be around to keep up the site, but I thank 
 the quad site for all the help you have been over the years.  My prayer is 
 that God touches all of you in a very special way this year.  I have to be 
 able to make a post on July 10, 2015.
  
 OK, now Get er Done
 
 Glenn Henry

[QUAD-L] Hugs and their meaning

[Dana Wray]

I understand what you mean about hugs. My mom and I, we have a special hug 
between each other every time we get together. It is great.
Dana

Sent from my iPhone

 On Jun 24, 2014, at 9:11 PM, RONALD L PRACHT r.pra...@sbcglobal.net wrote:
 
 I feel the same way, people give you  one arm meaningless half hugs
 
 ron
 
 
 On Tuesday, June 24, 2014 8:59 PM, Gmail bobbiehumphre...@gmail.com wrote:
 
 
 I was wondering how are you guys received and get hugs. Most of the time, 
 people that are close to me, well lean down their upper body, put their arms 
 around my shoulders and press their cheek to my cheek. I never feel like I've 
 really gotten a hug. And I watch them hug somebody else who is standing and 
 they get a real hug, where the more of the upper body is touching.
 
 My brother, Gary, always, ALWAYS gave me my favorite kind of hugs. He will 
 approach me from the front, spread his legs apart so he is straddling over my 
 thighs, then he presses his upper body against my upper body and gives me a 
 real wonderful hug. 
 
 Bobbie 
 
 Smile Everyday
 

[QUAD-L] Re: Call Secretary of Labor Tom Perez NOW!

[Dana Wray]

Call DOL Secretary Tom Perez
More Info

Tell him to delay Companionship Exemption Regulations until 2016.
 
ADAPT's Workforce Workgroup is asking for Disability Advocates across the 
country to call Department of Labor Secretary, Tom Perez, today.

You only need to call once but then get ALL YOUR FRIENDS to join in the fun 
(really, get everybody you know to give him a call!).

The message is short and simple:

Hello Tom (Perez, Secretary of Labor). I am calling to ask you to delay the
implementation of the Final Regulations on the Companionship Exemption for
eighteen months in order to allow time to finish studying the long term
implications and results. Thank you.

OR;

Hey Tom, delay the Companionship Exemption Regs until July 2016. Thanks.

Call directly to a human person at the Department of Labor Chief of Staff at
202-693-6007.

At some point, calls will go directly to voicemail, try the DOL's 
Administrative Office at
202-693-6000).

Thanks to all the fine ADAPTers out there and as always...
FREE OUR PEOPLE!

David Wittie, Workforce Workgroup Co-Chair
 
For more information on why we are asking Secretary Perez to do this, 
visithttp://www.DOLOffMyBody.org
 
 If you no longer wish to receive e-mail from us, please click here. 



Sent from my iPhone

 On Jun 18, 2014, at 11:40 AM, Dave Sutliff-Atias dat...@cdrnys.org wrote:
 
 
 Call DOL Secretary Tom Perez  
 More Info
 
 Tell him to delay Companionship Exemption Regulations until 2016.
  
 ADAPT's Workforce Workgroup is asking for Disability Advocates across the 
 country to call Department of Labor Secretary, Tom Perez, today.
 
 You only need to call once but then get ALL YOUR FRIENDS to join in the fun 
 (really, get everybody you know to give him a call!).
 
 The message is short and simple:
 
 Hello Tom (Perez, Secretary of Labor). I am calling to ask you to delay the
 implementation of the Final Regulations on the Companionship Exemption for
 eighteen months in order to allow time to finish studying the long term
 implications and results. Thank you.
 
 OR;
 
 Hey Tom, delay the Companionship Exemption Regs until July 2016. Thanks.
 
 Call directly to a human person at the Department of Labor Chief of Staff at
 202-693-6007.
 
 At some point, calls will go directly to voicemail, try the DOL's 
 Administrative Office at
 202-693-6000).
 
 Thanks to all the fine ADAPTers out there and as always...
 FREE OUR PEOPLE!
 
 David Wittie, Workforce Workgroup Co-Chair
  
 For more information on why we are asking Secretary Perez to do this, visit 
 http://www.DOLOffMyBody.org
  
  If you no longer wish to receive e-mail from us, please click here. 
 
 
 

Re: [QUAD-L] Itchy Head

[Dana Wray]

I use betamethasone on my scalp and the shampoo I almost every day
 Fougera Cicopirox shampoo 1%
Sent from my iPhone
Dana

 On May 30, 2014, at 2:02 PM, greg g...@eskimo.com wrote:
 
 I've had such an itchy scalp for years. It comes and goes and sometimes 
 itches so bad it hurts. I can't reach the center worst area, so I have others 
 scratch it hard and long. The doc suggested rubbing my scalp with Crisco 
 Oil/Shortening at night and massaging it in good. Then washing it out in the 
 morning. Then scrapping your scalp with a plastic black comb. Lots of dead 
 skin flaked off. I had to do it a couple times, but it's great now. Relief.
 Greg

Re: [QUAD-L] Hands-free Harmonica

[Dana Wray]

Welcome to the quad with Joe. There are a lot of interesting people on the list 
and you can learn a lot from now on. We have all had different experiences and 
try different things to help us live independently. Thank you for joining,
Dana 
C 4-5 Complete quadriplegic 40 years post in July 26,74
MVA in Prairie Village Kansas

Sent from my iPhone

On May 26, 2014, at 5:33 PM, linda...@comcast.net wrote:

 Welcome  to the Quadlist. Some really nice friends here.
 
 Lindaf

Re: [QUAD-L] chills

[Dana Wray]

 Common
So sorry to hear about your UTI and been septic. I hope you're feeling better 
soon.
Dana C4-5 Quadriplegic
40Years in July
Sent from my iPhone

On May 6, 2014, at 3:35 PM, Patricia Brown-Tulee pl...@yahoo.com wrote:

 my chills ended up being a bad infection. i was hospitalized over the weekend 
 cuz i became septic. my sp has become a nightmare  i think it's due to my 
 lack of education to it  being taken off my macrodatin
  
 Patricia L. B 
 pl...@yahoo.com 
 
 while adding years to your life, add life to your years
 On Friday, May 2, 2014 3:37 PM, RONALD L PRACHT r.pra...@sbcglobal.net 
 wrote:
 your body may adjust. more than likely you are experiencing dysreflexia in 
 some form.getting a doctor to acknowledge or understand this is another story 
 in itself
 
 ron
 From: Fragile swl...@gmail.com
 To: Patricia Brown-Tulee pl...@yahoo.com; quad-list quad-list@eskimo.com 
 Sent: Friday, May 2, 2014 4:55 PM
 Subject: Re: [QUAD-L] chills
 
 Dysreflexia?  I've had a problem with dysreflexia ever since my sp was put in 
 16 months ago.
 
 
 On Fri, May 2, 2014 at 2:28 PM, Patricia Brown-Tulee pl...@yahoo.com wrote:
 I've had these annoying chills  I don't know y they're here! wondering if 
 this is the way my body is handling my 3 week old supra-pub. Doc says it 
 looks normal  no butt differences 
  
 Patricia L. B 
 pl...@yahoo.com 
 
 while adding years to your life, add life to your years
 
 
 
 
 

Re: [QUAD-L] Injury anniversaries

[Dana Wray]

 Happy 41 anniversary Bobbie always enjoy hearing from you on the list
Hope you have a special day.
Dana
Sent from my iPhone

On Apr 18, 2014, at 11:11 PM, diannal...@aol.com wrote:

 Love it! Happy 41st  Anniversary, my friend!
 That, that doesn't kill us makes us stronger.   
 -Original Message-
 From: wheelchair wheelch...@aol.com
 To: bobbiehumphreys7 bobbiehumphre...@gmail.com; quad-list 
 quad-list@eskimo.com
 Sent: Fri, Apr 18, 2014 8:23 am
 Subject: Re: [QUAD-L] Injury anniversaries
 
 So true Bobbie.   Congrats on your special day.  Consider all those who you 
 have inspired during your journey and those in the future.
  
 Best Wishes
  
 In a message dated 4/17/2014 7:30:45 P.M. Central Daylight Time, 
 bobbiehumphre...@gmail.com writes:
 I always loved this quote and find it very appropriate for my 41st 
 anniversary;
 
 That, that doesn't kill us makes us stronger.  Bobbie
 
 Smile Everyday

Re: [QUAD-L] Something tasty to keep you regular

[Dana Wray]

,
I enjoy eating sure if those candy either Werthers or Jolly ranchers
Dana

Sent from my iPhone

On Mar 29, 2014, at 6:15 PM, jume9...@comcast.net wrote:

 Hi all,
 I have found that eating sugar free See's candy keeps thing moving smoothly. 
 They use Maltitol instead of sugar. Seriously.
 
 Meredith

Re: [QUAD-L] Contacting pharmaceutical company

[Dana Wray]

I think most drug companies might have a program for medication. A sister of a 
friend of mine has written pharmaceutical companies for drugs she could not get 
Or afford.
Dana

Sent from my iPhone

On Mar 26, 2014, at 9:02 PM, Gmail bobbiehumphre...@gmail.com wrote:

 Has anybody ever contacted a pharmaceutical company to request a discount on 
 a medication?
 I use Pennsaid 1.5% every single day for pain in my neck  lower back ... it 
 works extremely well for me. Pennsaid cost $200 per bottle, it lasts me about 
 1 1/2 months.
 Bobbie 
 
 Smile Everyday

Re: [QUAD-L] Hive got a question

[Dana Wray]

Hi Larry, I am so sorry I'm so glad the Benadryl works for you.
Dana

Sent from my iPhone

On Mar 21, 2014, at 8:13 PM, jume9...@comcast.net wrote:

 Have you started any new meds? Perhaps a drug interaction?
 
 Meredith
 
 From: Larry Willis lwillis82...@gmail.com
 To: quad-list@eskimo.com
 Sent: Friday, March 21, 2014 2:27:24 PM
 Subject: [QUAD-L] Hive got a question
 
 Hey buds. Hope everyone had a good day. Mine got much better thanks to Mercer 
 college! Anyway, I've been taking Percocet for pain for well over ten years 
 with no problems. Suddenly, a few weeks ago, I started breaking out with very 
 nasty hives every time I take one. It is really ugly with red rash and what 
 looks like big blisters  over my arms, neck, shoulders, and thigh. It itches 
 terribly. I take a couple of Benadryl and within an hour it is pretty much 
 gone. Anyone else had this experience? This is the first time I have ever had 
 hives and I thought I was possessed (Too many movies!).
 
 Concerning dreams -- I seem to remember only the ones caused by restlessness 
 or pain. 
 A few weeks ago I was having terrible stomach/bladder pain with cold sweats 
 etc. at night. I had vivid dreams for four nights in a row. They were all 
 populated by friends and family who have passed on. My dad who died in 2003 
 was in all of them. There was nothing particularly scary about them, but I 
 woke up with an eerie, uncomfortable feeling and my heart racing. I haven't 
 had any more since I started taking Benadryl at night. Knocks me out.
 What to make of all of this? Larry
 

Re: [QUAD-L] A dream/nightmare I had

[Dana Wray]

All,
I rarely dreams.
Dana

Sent from my iPhone

On Mar 20, 2014, at 9:28 PM, Toby Ausbun toby.aus...@yahoo.com wrote:

 Is their anyone on the list that don't have dreams anymore ? I don't and 
 haven't for years should I contact my doctor or is it normal with all the 
 meds we take ? Just wandering, c4 complete
 
 Sent from my iPad
 
 On Mar 20, 2014, at 8:46 PM, greg g...@eskimo.com wrote:
 
 I used to take the medication for bladder spasms. They made me wake up with 
 dreams in a panic.
 Other times I would have weird dreams often in my wheelchair but I could get 
 up and walk around. Lots of times I was trying to get to the bathroom and 
 not making it, and going poo in my pants. And when my pain levels are 
 getting high I often dream that I am in a lot of pain, like I get my leg 
 shut in a car door, or I am getting crushed by a vice.
 The bathroom dream I am sure is because of all our worries about doing our 
 bowel program.
 Greg 
 
  I know what you mean Bobbie, I have had weird strange dreams caused
  by ba pain at night also.  Dan H.
 
 
  Hi All,
   I wanted to tell you about a dream/nightmare I the other
  night. For some reason I was being punished for something I did and
  my form of punishment was to be executed in an electric chair -
  LOL. I was all strapped into the chair and the lever was pulled to
  start the process of building up the electricity. My executioner
  asked if I had any last words and I said No more pain, I'll have
  no more pain. No more pain, no more pain, I'll have no more pain.
  I just kept repeating it over and over and when I woke up in the
  middle of the night and started to cry because the reason I woke up
  was because my pain was so bad and I wished my dream was real. 
  Bobbie

Re: [QUAD-L] Fwd: Sores

[Dana Wray]

I'm sorry to hear that you have been fighting your sore Cheers and it is still 
open. I'm sure you already know to Drink protein, zinc and I take a generic 
L-arginine 500 m. Ensure that is the low-fat 1-25 mg  Proteins, 5 g of sugar 3 
g of fiber 2.5 g of fat

Sent from my iPhone

On Mar 14, 2014, at 8:32 PM, Larry Willis lwillis82...@gmail.com wrote:

 I hear you too, Bobbie. I refuse to do any of those tests that docs recommend 
 for my age. I think it's my way of telling the universe to go -- itself. I 
 don't control much, but I do control this. Larry
 
 -- Forwarded message --
 From: Gmail bobbiehumphre...@gmail.com
 Date: Friday, March 14, 2014
 Subject: Sores
 To: Larry Willis lwillis82...@gmail.com, quad-list quad-list@eskimo.com
 
 
 Larry, I hear ya. It is YOUR body and of you don't want to stay in bed for X 
 amount of months in bed, then don't.
 
 I, personally have NEVER EVER seen an OBGYN or had a PAP smear or have a 
 mammogram. I'll never have a Colonoscopy or any other type of tests for 
 disease hunting. I've been plugging along doing this Quad living for over 
 40 years now. 
 
 My 2 cents.Bobbie  
 
 Smile Everyday
 
 On Mar 14, 2014, at 7:57 PM, Larry Willis lwillis82...@gmail.com wrote:
 
 Wow, guys, Some tough situations and even tougher people. I've had a 4 inch 
 sore on my butt for over 6 yrs. It just refuses to heal. We dress it twice a 
 day. It is not deep and doesn't tunnel. However, it is a wide open sore. I 
 sit on a Roho and fully expect to take this sore to the grave with me. I 
 simply cannot and will not spend the 12 months or more in bed that healing 
 would require. It burns and hurts like crazy some daysand nights. 
 However, I am 62 and 43 years post. I'm pretty sure I'm not nearly as 
 motivated as I once was.
 
 Sent from my iPad
 

Re: [QUAD-L] Fwd: Sores

[Dana Wray]

Had gangrene from the surgeon leaving a fixator on my foot too long. I was on 
wound vac for two months and then I had plastic surgery on my heel.  They had 
me on so much proteins I drank about 2 Insure per day and yogurt. My wound Dr
in the past had told me to take L-arginine was it which is a generic form, My 
rehab doctor had told me to take 2-256 mg of Zinc when I had a sore Which is a 
prescription. Dr. Oz says to eat Protein every 2 to 3 hours for a normal person 
as we age.

Probably already know this.
Dana
Sent from my iPhone

On Mar 14, 2014, at 8:32 PM, Larry Willis lwillis82...@gmail.com wrote:

 I hear you too, Bobbie. I refuse to do any of those tests that docs recommend 
 for my age. I think it's my way of telling the universe to go -- itself. I 
 don't control much, but I do control this. Larry
 
 -- Forwarded message --
 From: Gmail bobbiehumphre...@gmail.com
 Date: Friday, March 14, 2014
 Subject: Sores
 To: Larry Willis lwillis82...@gmail.com, quad-list quad-list@eskimo.com
 
 
 Larry, I hear ya. It is YOUR body and of you don't want to stay in bed for X 
 amount of months in bed, then don't.
 
 I, personally have NEVER EVER seen an OBGYN or had a PAP smear or have a 
 mammogram. I'll never have a Colonoscopy or any other type of tests for 
 disease hunting. I've been plugging along doing this Quad living for over 
 40 years now. 
 
 My 2 cents.Bobbie  
 
 Smile Everyday
 
 On Mar 14, 2014, at 7:57 PM, Larry Willis lwillis82...@gmail.com wrote:
 
 Wow, guys, Some tough situations and even tougher people. I've had a 4 inch 
 sore on my butt for over 6 yrs. It just refuses to heal. We dress it twice a 
 day. It is not deep and doesn't tunnel. However, it is a wide open sore. I 
 sit on a Roho and fully expect to take this sore to the grave with me. I 
 simply cannot and will not spend the 12 months or more in bed that healing 
 would require. It burns and hurts like crazy some daysand nights. 
 However, I am 62 and 43 years post. I'm pretty sure I'm not nearly as 
 motivated as I once was.
 
 Sent from my iPad
 

Re: [QUAD-L] am I cold, or am I hot

[Dana Wray]

I wear legwarmers almost all the time.
Dana

Sent from my iPhone

On Mar 7, 2014, at 2:02 PM, Don Smith scamper2...@att.net wrote:

 Have you tried wearing thick long socks to keep your feet warm.  Are feet 
 have alot of nerve endings and if they're cold your body may feel cold.
 
 From: Bill Lang blan...@verizon.net
 To: Don Price donpric...@yahoo.com 
 Cc: Dave Krehbiel davekrehb...@earthlink.net; greg g...@eskimo.com; 
 quad-list@eskimo.com quad-list@eskimo.com 
 Sent: Thursday, March 6, 2014 6:11 PM
 Subject: Re: [QUAD-L] am I cold, or am I hot
 
 I seem to be always cold! 24 years of shivering. I am sitting here in a 74 
 degree room wrapped in a blanket with a hood and a neck warmer. That works 
 for me most times.
 
 I feel for you.
 
 Sent from my iPad Billy
 
 On Mar 6, 2014, at 17:42, Don Price donpric...@yahoo.com wrote:
 
 Don't know if you touch alcohol, but a glass of red wine seems to reset my 
 internal temperature gauge. Of course, alcohol and certain medications are 
 not a good combination, so be careful there.
 
 Your situation, as described, seems to be more neurological than 
 environmental. In my opinion, it's not a matter of blankets and air 
 temperature, but more likely related to Autonomic Dysreflexia, inappropriate 
 vasodialation, poor blood circulation or something affecting your 
 hypothalamus. Maybe a combination. I assume you've talked to your physician 
 about this?
 
 I hope you can figure it out because being (feeling) cold is miserable!
 Don.
 
 
 On Thursday, March 6, 2014 2:54 PM, Dave Krehbiel 
 davekrehb...@earthlink.net wrote:
 I don’t know if it would help your problem, but I sleep much more 
 comfortably at night (and feel warmer during the day) when I wear a knit cap.
 -Dave
  
 From: greg [mailto:g...@eskimo.com] 
 Sent: Thursday, March 06, 2014 4:10 PM
 To: quad-list@eskimo.com
 Subject: [QUAD-L] am I cold, or am I hot
  
 I've mentioned this before, but I never heard if anyone else was 
 experiencing the same problem. I can sit in the sun for long times in hot 
 weather and feel fine. A few times I have gotten overheated, but at those 
 times I felt hot and overheated. And in Seattle at night I would use a 
 blanket, a sheet, and a heavy comforter. And all through the night I felt 
 toasty warm.
  
 But the last few years when I'm in bed daytime or night, but mostly 
 nighttime. Just using a sheet and one blanket. When my arms are covered. I 
 can feel like I am freezing cold, I can even be shivering. I can turn up the 
 heat, I can add a blanket, but I just feel colder. I often check my 
 temperature and it is about 97 or there about, my normal temperature is 
 about 96.5. I am so sure that I am cold, my arms feel like all the hair is 
 standing up and my arms are shaking. Then I realize what must be happening, 
 that I'm overheated. So I uncover my arms and at first, when the air gets my 
 arms I feel even a bit colder. But as my arms cool off they start to feel 
 better, no longer hot or cold. But then in the middle of the night they get 
 cold again from being uncovered. So it is damned if I do, damned if I don't.
  
 My arms often feel cold and tingly, except when the sun is shining on them. 
 But only when under covers do they get to bad. When I sit under the furnace 
 vent and get warm I don't shivering like that. When I fall asleep with my 
 arms covered I wake up shivering, my arms are clenched tight, and I would 
 bet everything I have that I am cold. Obviously I would lose that bet.
  
 I can't figure out how to stay warm night, without feeling like I'm freezing.
  
 Greg
 
 

Re: [QUAD-L] A.D. attack

[Dana Wray]

Meredith. How much nitroglycerin did you have to take to take?
Dana

Sent from my iPhone

On Mar 4, 2014, at 2:09 PM, jume9...@comcast.net wrote:

 My roomate has high blood pressure so he had it. Thank god!
 
 From: DAVID LEWIS curlyle...@verizon.net
 To: jume9...@comcast.net
 Sent: Tuesday, March 4, 2014 10:36:42 AM
 Subject: Re: [QUAD-L] A.D. attack
 
 Yes, i have had it a few times.  Once when having surgery years ago hen i 
 first broke my neck. The others were when i had kidney stones, and bad urine 
 infection.
 How did you have that nitroglycerrin for your ready?  I wouldnt mind having 
 something like that just in case.
 thanks
 
 
 On Tuesday, March 4, 2014 12:54 PM, jume9...@comcast.net 
 jume9...@comcast.net wrote:
 This morning during bowel care I had an A.D. episode that scared the shit out 
 of me, well actually that was the problem, I guess I was constipated. 
 Thankfully my roomate had some nitroglycerin which immediaetly  helped. I've 
 only experienced this once before about 20 yrs. ago. Have any of you had to 
 go to the hospital for that? When do you know to seek medical help? I'm still 
 a little shakey.
 
 Meredith
 
 
 

Re: [QUAD-L] Serious pain meds

[Dana Wray]

,
I'm so sorry to hear about your blood clot I am glad you will be up and I pray 
that the pain ceases for you.
Dana

Sent from my iPhone

On Mar 2, 2014, at 7:30 AM, wheelch...@aol.com wrote:

 Hiya Linda!  Welcome Back and I hope you are doing better with all the 
 snow you got this season.
  
 Best Wishes
  
 In a message dated 3/1/2014 5:27:48 P.M. Central Standard Time, 
 linda...@comcast.net writes:
 
 Hi   Everyone
 
 I've just gotten home from the  hospital w infection in my leg. That was my 
 second trip with a   blood  clot in myleft leg.I  take  a low dose of 
 vicoden  1  or 2 times a day  but its  getting   harder  to  get the vicoden, 
 no refills   have to go every month for a   script.  The vicoden only takes 
 the edge off. Nothing has ever taken away my  pain. I had a left glutieal  
 skin flap done in November.  I spent all last summer in bed so this summer I 
 can be up.
 
 Lindaf
 
  
 
 
  
 
 From: Gmail bobbiehumphre...@gmail.com
 To: quad-list quad-list@eskimo.com
 Sent: Thursday, February 27, 2014 7:49:54 PM
 Subject: [QUAD-L] Serious pain meds
 
 Hi All,
I've been taking 20 mgs of morphine (time release) everyday for 3 1/2 
 years now and 15 mgs of morphine (fast acting) when needed ... up to 4 times 
 a day. 
 Next week, Wednesday, I'm going to see my pain Doctor to be taken off the 
 morphine because it simply isn't working any more.
 
 Dose anybody have any suggestion of a very strong pain med? My pain is from 
 scoliosis, a syrinx, and arthritis in my spine.
 { I also take 500mgs of Gabapentin, 10mgs Valium}
 
 Bobbie 
 
 Smile Everyday

Re: [QUAD-L] the Intouchable

[Dana Wray]

Untouchables is a wonderful movie I saw it two years ago and I highly recommend 
it.
Dana

Sent from my iPhone

On Feb 21, 2014, at 7:07 PM, greg g...@eskimo.com wrote:

 I just watched the movie the Intouchables. I thought it was a great. It's a 
 French movie with subtitles. It's about a very wealthy white guy who hires a 
 streetwise black guy as his caregiver. There was some great scenes, though 
 some of them are a little unrealistic. I guess it is based on a true story. 
 It's on Netflix right now. One of the better quadriplegic movies.
 Greg
  

Re: [QUAD-L] I phone

[Dana Wray]

I use the iPhone 4S I use a stylus that is on a split. Can send you a couple 
pictures of the stylus and my splints I also have a box that I got at Walmart 
it opens and I put phone holders on top of it to hold my iphone.
Not using my iPhone without the style and I also use the data cord that I buy 
at Best Buy. It allows the stylus to work without touching.
Dana

Sent from my iPhone

On Feb 21, 2014, at 11:30 PM, RONALD L PRACHT r.pra...@sbcglobal.net wrote:

 Hey,
 
  Does anybody on the list use an I phone? I found a case on ebay I can 
 put a lanyard on so the phone can be grabbed easily with non working hands. I 
 was using my mothers ipod and figured out how to use the knuckle on the side 
 of my thumb to text. I think with practice I can manage it. May regret it, 
 but think im going to get one.
 
 Ron

Re: [QUAD-L] 12 of snow here in New Jersey

[Dana Wray]

Wow That is way too much snow!
Dana

Sent from my iPhone

On Feb 14, 2014, at 2:23 PM, Gmail bobbiehumphre...@gmail.com wrote:

 Yesterday we got 12 of snow that was on top of 8 already threre. Saturday 
 were going to get 3-5 MORE
 Bobbie.  Northren New Jersey
 
 Smile Everyday

Re: [QUAD-L] whats up with Dawn?

[Dana Wray]

Thank you Bobbie that is such wonderful advice. Are you able to get onto a 
State program for getting care? You would need To qualify for Medicaid. See if 
your state has self-directed care?
Dana

Sent from my iPhone

On Jan 25, 2014, at 4:42 PM, Gmail bobbiehumphre...@gmail.com wrote:

 Ron,
  Start making friends of every age and anywhere. Church's, clubs of 
 different kinds, start a club of your own (i've done this to make more 
 friends) join all kinds of organization's. When you meet people, invite them 
 over for lunch or dinner and ask for a little assistance - then they will see 
 what your needs are and what your capable of.
 Bobbie 
 
 Smile Everyday
 
 On Jan 24, 2014, at 11:35 PM, Danny Hearn ddh...@sbcglobal.net wrote:
 
 Yes, Ron.. I can understand that worry about your Dad passing, that's why I 
 sure hope I go before my wife. One good thing about your situation of the 
 house being paid for is that you can get a live in caregiver and work out a 
 deal for free room and board, over the years i've heard of quads doing this, 
 I guess you just gotta find the right caregivers. Maybe  even one that works 
 part time or hours that would work out for you both. Another good Idea is to 
 get a retired person or one on social security or disabled that can help 
 with your care...then they could save their money they pay on home or 
 apartment rent themselves.   Just tossing out suggestions.  Dan H***
 
 From: RONALD L PRACHT r.pra...@sbcglobal.net
 To: quad-list@eskimo.com quad-list@eskimo.com 
 Sent: Friday, January 24, 2014 5:12 AM
 Subject: Re: [QUAD-L] whats up with Dawn?
 
 It will be so weird when my dad passes. I will suddenly be all alone to 
 figure things out or not, it will be up to me and my ability to adapt and 
 figure things out. Some things can be overcome, some will require hired 
 help. The older I get, the harder it will be to make the changes needed . I 
 remember in 99 my mom told me she was divorcing my father and leaving. At 
 that point I was about a year post injury. I called my dad and told him mom 
 left and shes not coming back. Everybody thought I wouldn't be able to take 
 care of myself because my dad works nights and I would be alone. I was 21 
 then and wasn't scared a bit, I looked at that like an opportunity to show 
 people what can be done. I learned to wear a seatbelt, don't do foolish 
 things you cant get out of. I was driving my old 84 Ford van everywhere and 
 figuring out one problem at a time. At 37 yrs old things aren't as easy as 
 they were then. I don't have tons of friends anymore, a bunch of physical 
 ailments have popped up since then, but I have more knowledge at least. We 
 will see what the future brings. You can only prepare for it so much.
 
 
 Ron 
 
 
 
 
 
 
 
 
 From: Don Smith scamper2...@att.net
 To: RONALD L PRACHT r.pra...@sbcglobal.net 
 Sent: Thursday, January 23, 2014 2:00 PM
 Subject: Re: [QUAD-L] whats up with Dawn?
 
 Do you qualify for ihss hours, if so maybe now would be a good time to find 
 someone to come in on a part tme bases to help you with things you need help 
 with.  It well give your dad some relief and backup for you if and when 
 needed.
 
 
 From: RONALD L PRACHT r.pra...@sbcglobal.net
 To: quad-list@eskimo.com quad-list@eskimo.com 
 Sent: Thursday, January 23, 2014 12:23 AM
 Subject: Re: [QUAD-L] whats up with Dawn?
 
 That's terrible. I would have never guessed she would be having so many 
 issues. The good part is she is thankful to Pete, she is going to need more 
 help now than ever. Her abdominal pain/ function loss in the right hand 
 sounds like it could be a fluid filled cyst in the center of the spine at 
 the initial injury site called a spinal syrinx. A simple mri of her back 
 would reveal this.
 
 Im concerned right now, my father who is 66 yrs old with a history of heart 
 problems is having hot flashes, dizziness and feeling faint. He already has 
 had 5 shunts put in his arteries to keep them open. He is a machine 
 repairman and is trying to keep going to work. Im not sure what I will do 
 when/if my dad gets put out of commission. I can get myself in/out of the 
 bed and take a shower once in awhile on my own ( although the transfer to my 
 shower chair is risky due to the design of the shower chair), but I do have 
 a roll in shower. My bowell routines which are every other day will be the 
 issue. I need help with that. I can get dressed on my own and make basic 
 survival meals using the microwave or sandwiches. Im 16 yrs into my injury 
 and things could get scary really quickly. The house Im living in is paid 
 off and so is my van.
 
 Ronny
 
 
 
 
 From: Gmail bobbiehumphre...@gmail.com
 To: RONALD L PRACHT r.pra...@sbcglobal.net 
 Cc: quad-list@eskimo.com quad-list@eskimo.com 
 Sent: Wednesday, January 22, 2014 9:31 PM
 Subject: Re: [QUAD-L] whats up with Dawn?
 
 Ron,
  Something has happened to change her was within the past 6 months. For 
 the very first time she gave Pete a 

Re: [QUAD-L] Days in bed 2013

[Dana Wray]

  I had the best care at KU hospital but I usually go to a smaller hospital 
that is close to me that my doctors go to. New to give me after every day for 
my long but in the small hospital they did not give me up one day luckily I was 
always there for a week. For what I thought I gave it to them and so did my 
caregiver. They ask me not to turn in my questionnaire . I had so many problems 
going on that I don't think I even saw the questionnaire. Going to the hospital 
is hell
Other care at KU because they messed up my surgery and maybe they gave me Extra 
care

Because they were wrong.
Dana

Sent from my iPhone

On Jan 22, 2014, at 7:35 PM, lwillis...@yahoo.com wrote:

 Dana, you are right about hospitals. The nurses in my small-town hospital are 
 kind and well-meaning, but they know nothing about quad care. Very 
 frustrating. Larry Willis
 
 Sent from my iPad
 
 Begin forwarded message:
 
 Resent-From: quad-list@eskimo.com
 From: daa...@aol.com
 Date: January 22, 2014 at 2:42:42 PM EST
 To: jlu...@eskimo.com, quad-list@eskimo.com
 Subject: Re: [QUAD-L] Days in bed 2013
 
 Jim,
 you should be able to go out patient and get the wound vacuum and have a 
 visiting nurse take care of it. I got mine while hospitalized because of my 
 foot surgery that went wrong. I think they would do them outpatient. I would 
 ask my doctor and maybe search for a Dr.  that would do outpatient. I had 
 mine for two months and the agency took care of it. I have gotten a pic line 
 to my heart for IVs with Pseudomonas in my lungs. I would think they would 
 be equal procedures. I had to have skin from my stomach use for my heel, 
 that was also outpatient. No I take that back I had to stay overnight. I 
 hate going in the hospital as they never know how to do my care. It is a 
 nightmare.
 
 Does anyone have the same experiences.
 
 Just my experiences.
 Dana
  
 In a message dated 1/22/2014 1:31:26 P.M. Central Standard 
 Time,jlu...@eskimo.com writes:
 I didn't get why I couldn't get a wound vac at home without going to the 
 hospital first. Oh well, I have night nurses (due to being on the vent)
 and they clean and change the packing every morning. 
 
 
 On Wed, Jan 22, 2014 at 5:28 AM, wheelch...@aol.com wrote:
 Jim, your situation must be most unique.  I know of dozens of Quads, using 
 wound vacs at home.  Some are changed twice a day, once a day and 
 sometimes, once every 3 days, by a nurse.  Wound cleaning is usually done 
 at a hospital or clinic so the medical doctor/wound specialist can observe 
 progress.  Some nurses take phone/pictures of the wound with each change in 
 dressing and convey it to the doctors.
  
 Best Wishes
  
 In a message dated 1/21/2014 8:40:52 P.M. Central Standard Time, 
 jlu...@eskimo.com writes:
 they briefly discussed a wound vac, but it would have involved a stay in 
 the hospital. I'm too paranoid of getting any infections going to a 
 hospital. This year makes 25 years and the only respiratory infection I 
 have ever had was year 1 while in rehab.
 
 Over the year it went from 2.7cm deep to 1cm deep now. Might heal faster if 
 I completely get off it but I have not been, just on the alternating air 
 mattress. 
 
 
 On Tue, Jan 21, 2014 at 4:35 PM, wheelch...@aol.com wrote:
 Sorry to hear that Jim.  Are you also using a wound vac?
 Best Wishes
  
 In a message dated 1/21/2014 6:33:42 P.M. Central Standard Time, 
 jlu...@eskimo.com writes:
 I've been in bed since December 2012. I've only been getting out of bed 
 into my chair once a month to go to the woundclinic. I use to 
 hate being in bed but have realized what the problem was that with my 
 adaptive input not setup to use from bed I couldn't do anything. Now that 
 I can use the computer from bed and control the tv/dvr using a slingbox, I 
 can do everything I would normally be doing from bed. No need to get 
 dressed, do transfers in and out of bed saving about an hour a day to do 
 something else.
 
 My would was small but deep. I was given the option of flap surgery but 
 that would require going to the hospital then a nursing home. No thanks. 
 So it's healing slowly, no infections. My nurses change the packing in the 
 wound daily. 
 
 Jim
 

Sent from my iPhone

On Jan 22, 2014, at 7:35 PM, lwillis...@yahoo.com wrote:

 Dana, you are right about hospitals. The nurses in my small-town hospital are 
 kind and well-meaning, but they know nothing about quad care. Very 
 frustrating. Larry Willis
 
 Sent from my iPad
 
 Begin forwarded message:
 
 Resent-From: quad-list@eskimo.com
 From: daa...@aol.com
 Date: January 22, 2014 at 2:42:42 PM EST
 To: jlu...@eskimo.com, quad-list@eskimo.com
 Subject: Re: [QUAD-L] Days in bed 2013
 
 Jim,
 you should be able to go out patient and get the wound vacuum and have a 
 visiting nurse take care of it. I got mine while hospitalized because of my 
 foot surgery that went wrong. I think they would do them outpatient. I would 
 ask my doctor and maybe search for a Dr.  that 

Re: [QUAD-L] Re: quad site

[Dana Wray]

Hi Patricia,
Congratulations, way to go!
 Dana

Sent from my iPhone

On Jan 17, 2014, at 5:08 PM, Patricia Brown-Tulee pl...@yahoo.com wrote:

 I've lost 3 inches on my stomach living very low carb for 6 months, patience 
 is hard though
  
 Patricia L.
 pl...@yahoo.com
 
 
 while adding years to your life, add life to your years
 
 
 On Friday, January 17, 2014 11:22 AM, Nan nlg52...@yahoo.com wrote:
 I've had bronchitis and haven't been online.  Actually, haven't done much of 
 anything ... starting to feel human again!  Thank God.
 
 
 
 On Thursday, January 16, 2014 6:58 PM, KK Batte kkba...@outlook.com wrote:
 Sorry guys but I got sick with flu type illness Christmas.  Finish the 
 antibiotics tomorrow  still not better.  GRRR!!
 
 KKB
 
 Date: Thu, 16 Jan 2014 11:24:16 -0800
 From: scamper2...@att.net
 Subject: Re: [QUAD-L] Re: quad site
 To: wheelch...@aol.com; gah17...@aol.com
 CC: quad-list@eskimo.com
 
 Their either out and about or frozen in snow with no internet or just to cold 
 to get out of a nice warm bed
 
 
 From: wheelch...@aol.com wheelch...@aol.com
 To: gah17...@aol.com 
 Cc: quad-list@eskimo.com 
 Sent: Thursday, January 16, 2014 10:17 AM
 Subject: [QUAD-L] Re: quad site
 
 Not much happening here Glenn.  I suppose that summer came early this year 
 and everyone is out n about trying to improve their suntans.  Hope you are ok.
 Best Wishes
  
 In a message dated 1/16/2014 12:12:28 P.M. Central Standard Time, 
 gah17...@aol.com writes:
 Hey Wheels,
  
 Has the quad site have many posts over the past 2 weeks?
  
 I'm not getting anything.  Isn't there a way to look at archives?
  
 Thanks,
 
 Glenn Henry