What is the best system for dictating to a computer? Could
you gave me some advice?
Lana
Gabe’s mom
We found out what was causing all of Gabe’s bowel and
bladder spasms. Another UTI, that means Gabe has had one almost steady for
three months now. He has an appointment Thursday with urologist. I think it
might be time for a series of antibiotic instillations. That is the only way he
has ki
I was hoping you guys could help me. Gabe is having
bladder and bowel spasms. He had kidney stones removed in Sept. and ended up
with a double UTI. He still has not kicked them. He has a lot of bowel spasms
and when ya add bladder spasms he refuses to get out of bed. Mind you this is
not G
My son, Gabe has spasms. I’m not
sure if that is the same. We have dealt with an issue much like this. It is ongoing
so we have to stay on top of it. If I were you I’d make sure he is seeing
a rehab doc that can address rehab/pain. I would get a real good behaviorist
and PT working on this.
Does this sound familiar?
For years my family had all celebrations and gatherings at
their homes. When Gabe had his injury I insisted that some should be here. Over
the past ten years it has been like I was begging. I would explain all the issues-
access to the house, toilet, . I wo
Does anyone have a cough assist? If so, how did you get it. Does
insurance and Medicaid step up to the plate.
Lana,
Gabe’s mom, 10 years post, C4-5
Gabe had a pressure sore on his butt that he couldn't kick. We tried all the
heavy duty "derm" dressings. We found out that sweat and the general
bunching up of the buns when sitting and dressings falling off early kept
the sore alive and well. So we tried Tegederm. Yes, the thin stuff. It
worked.
Ronald,
Just our experience and what docs told us.
Lorezepam also known as ativan is in the
same family as valium –benzodiazepines. Valium seems to do well for
controlling spasms- so does ativan. One big difference between the two is
valium has a very long half life and will stay i
Gabe has been ill so I haven’t posted for a while. He
had close to 300 seizures in October. Fortunately most of them were mild (still
hell for him). After he got the kidney stones out that were causing the AD they
put him on an antibiotic. It was the wrong antibiotic and he got a raging UTI
high and how fast it goes up. If Gabe’s
goes up then comes down immediately he doesn’t take anything.
Lana
Gabe’s mom
From: Eric Olson [mailto:[EMAIL PROTECTED]
Sent: Sunday, October 23, 2005
5:38 PM
To: Lana Baugh
Cc: quad-list@eskimo.com
Subject: Re: FW: [QUAD-L] About
A.D
From: Lana Baugh [mailto:[EMAIL PROTECTED]
Sent: Sunday, October 23, 2005
2:56 PM
To: 'Brien Stocker'
Subject: RE: [QUAD-L] About A.D. =
Autonomic Dysflexia
Brien,
Gabe carries procardia. It is a gel
capsule. You snip or bite off the tip and squeeze it
From the info I’ve read on AD, it is
the number 1 cause of death in individuals with a SCI. The number 1 cause of
unresolved AD was kidney stones.
Fortunately, most of Gabe’s specialists
take it seriously. It’s the reg MDs and the nurses that don’t seem
to have a clue. He carries an em
From: Lana Baugh
[mailto:[EMAIL PROTECTED]
Sent: Thursday, October 06, 2005
11:59 PM
To: 'Jeremy Dickinson'
Subject: RE: [QUAD-L]
Transportation
Jeremy,
I’m a parent. Bug your parents.
Maybe if they drive it enough they will eventually let your nurses dri
Gabe rarely has a rash or infection now. He learned the hard
way and it took many years. There are two important things. 1) Keeping the area clean and dry as possible:
Keep the area clean- Bath/shower daily if possible. Dry the area well before you apply anything. Air the
area well whenever
Gabe's staff uses a blow dryer on cool and dries the area. Then they apply
creamy desitine. If it turns into a yeast infection, dry area with blow
dryer on cool then use myconazole 2-3x day. It works well and has controlled
problem for many years.
Lana
Gabe's mom
-Original Message-
From:
Eric,
Gabe had several made at Schwab Stamps. P.O. Box 26069, Milwaukee, Wisc.
53226. 1-800-935-9877. They are pretty cheap and work very well. They are
self inking so he doesn't need to use a pad.
Lana,
Gabe's mom
-Original Message-
From: Eric Olson [mailto:[EMAIL PROTECTED]
Sent:
Brian,
I just asked my husband. He works for the P&A and he is an attorney that
specializes in disability law. He said they are eligible for Medicare if
they have worked the required quarters and paid into the system.
Lana,
Gabe's mom
-Original Message-
From: Brian Stocker [mailto:[EMAIL
I thought this information would be of interest to you all. A
man with paraplegia was hospitalized in one of our local hospitals, St. Luke’s,
with pneumonia. When he was taken down to X-ray he was unconscious. They propped
him up and left him unattended during the x-ray. He fell off the tab
Jeremy,
My son, Gabe has body temp changes and problems all the time. I've never
seen shivers. What I understand, if you are a high quad -body temp is a
serious issue. Gabe carries a thermometer, instant ice packs with him in the
summer and instant heat packs in the winter. Doc said he could have
Dan,
My husband corrected me. Gabe had
Pseudomonas in a Central line when he was hospitalized. It was treated by IV antibiotic.
I do not know what that antibiotic was. The infection Gabe had that we treated
with instillations was Klepsiella pneumonia. This is a bug that is usually foun
takes about a month- 4x day to heal completely ]
How much
solution per irrigation and how long do you let it sit in there to
absorb? That's 120 procedures...
Lana Baugh
<[EMAIL PROTECTED]> wrote:
Dan,
When Gabe had his first pseudomonas UTI
the doc tried
Dan,
When Gabe had his first pseudomonas UTI
the doc tried treating it with oral meds and it didn’t work because pseudomonas
is a bacteria that usually attacks the lungs it’s very hard to treat with
oral meds. Our home nurse suggested instilling the antibiotic directly into
the bladder.
Has anyone used the P.I.E. machine? Does it
work? Gabe’s stomach gets huge. His Bp goes up. He is
miserable. Tonight was really bad, we couldn’t bring diastolic BP down
until we used 2 extra saline enemas. Gabe’s typical routine is two enemas
per day- 1biscodyl in am- 1 saline in pm with ab
cussing world events, religion, politics, etc.
if you decide to wade into a discussion, or start one of your own (god
forbid) you will find out being crippled doesn't keep you from being a
kneejerk ideaogue.
good luck
-dave headman
c4 26yrs post
>From: "Lana Baugh" <[EMAIL
My son has a baclofen pump that is made from
metal and he has had several MRIs. They used to worry about it. I don’t
know if their attitude changed or if they just have newer machines. Just call
your local MRI center. I think there are still a few exceptions.
Lana
Gabe’s mom
Stacy,
Hang in there!!! Our thoughts and prayers
are with you.
Lana,
Gabe’s mom
From: Stacy Harim
[mailto:[EMAIL PROTECTED]
Sent: Tuesday, September 06, 2005
8:43 PM
To: Quad-List@eskimo.com;
[EMAIL PROTECTED]
Subject: Re: [QUAD-L] out of
commission for a while
Please
Share and Forward to all your networks:
The site is an emerging one stop information center for Katrina and people
with disabilities
It includes government
and non profit responses to the crisis.
http://katrinadisability.info/
Excerpt:
Medicaid and TANF
NEWEST IN
Welcome to the list. There are many wise
people here. I have learned a lot from these folks. I write on behalf of
my son, Gabe. Gabe is 32 and 10 years post injury. His injury occurred after he
had a laminectomy (sp?). He had several spinal cord stokes following two
seizures after surgery.
Dana,
There are several types of switches. You can
control just about any battery or plug in item with a switch. Switches come in
all shapes and sizes. Switches to open and close doors, change channels, pop-
pop corn, etc. All switches that don’t have a direct/latch/timer attached
are d
Joan,
Have you investigated switches that could
move the straw toward your mouth and then move it away. Some switches now are
flat and some are as thin as cellophane and could lay next to your head on a
pillow. Gabe uses a lot of switches.
Lana,
From: Joan Anglin
[ma
Joan,
Have you tried modifying a camel water
pack. I think that’s what they are called. Cross country bikers place
them on their backs and the straw comes around to the face.
Over the years we have modified a lot of
stuff from bikes. A lot of the bracing supplies we buy from the “ho
Corie
- Original Message -
From: Lana Baugh
To: quad-list@eskimo.com
Sent: Friday, September
02, 2005 1:54 PM
Subject: [QUAD-L] Suffering
from Katrina
Folks have some empathy.
From what I understand there are people there that could
have left. Thi
EMAIL PROTECTED]
Sent: Friday, September 02, 2005
3:13 PM
To: Lana Baugh; quad-list@eskimo.com
Subject: Re: [QUAD-L] Suffering
from Katrina
Yes Lana, a lot of us here have made a huge
mistake and regretted it. We have all moved forward in our new lives
realizing there is no going back. Hope
Folks have some empathy.
From what I understand there are people there that could
have left. This includes a criminal element to see how they could benefit.
However, the majority of people who did not leave were ill,
elderly, disabled, the individuals caring for them and the poor.
we had to determine eligibility by
the fed standards a SCI met the standard of DD.
Lana
Gabe’s mom
From: Liz [mailto:[EMAIL PROTECTED]
Sent: Saturday, August 20, 2005
6:26 AM
To: Lana Baugh; 'Lori Michaelson'; quad-list@eskimo.com
Subject: Re: [QUAD-L] Home
help/health care - Ga
Liz,
When I worked at the P&A and we had to
determine eligibility by the fed standards a SCI met the standard of DD.
Lana
Gabe’s mom
From: Liz
[mailto:[EMAIL PROTECTED]
Sent: Saturday, August 20, 2005
6:26 AM
To: Lana Baugh; 'Lori Michaelson'; quad-list@eskimo.c
Lori,
It’s true that individuals with developmental
disabilities have different needs and different programs. Working through the “DD
maze” is just as difficult and problematic. I’ve worked through
both in our state. We had to fight to get Gabe’s programs and prove that
we and our insuranc
From: Lana Baugh
[mailto:[EMAIL PROTECTED]
Sent: Friday, August 19, 2005 7:10
PM
To: '[EMAIL PROTECTED]'
Subject: RE: [QUAD-L] Home
help/health care - Gabe
John,
My son, Gabe has a birth defect, several,
as a matter of fact. He also has a SCI. I do not g
Luke,
Thanks for the info. I’ll talk to the doc
about it. It’s one thing we haven’t checked.
Thanks,
Lana, Gabe’s mom
From:
[EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]
Sent: Thursday, August 18, 2005
9:45 AM
To: [EMAIL PROTECTED]
Subject: Re: [QUAD-L] Pain and AD
John,
Thanks for your response. We watch the BP
like a hawk. Gabe takes procardia for BP. I was hoping that I could keep
some pain down with the baclofen and then he wouldn’t have AD and wouldn’t
need to take procardia. Gabe even has BP stuff equipment and meds in his back
pack. Gabe
Luke,
Gabe is 32 years old and 10 years post and
he has a C-4-5-6-incomplete injury. It was caused by pressure from a seizure producing
a spinal cord stroke following a laminectomy. His electric chair tilts
and that helps. We fought with the insurance co. and he will get a new manual
call
I have posted several times about Gabe, my son and a problem
that he is having with autonomic dysreflexia (AD) and pain. It started
with AD in the late afternoon and some bladder and bowel spasms would follow. The
Ad would resolve when he would lay down. Now he has serious pain.
We have b
Greg
My son is on a Medicaid waiver. He gets
24/7 care. Not all States have waivers and some States have several types.
Check to see if you’re eligible. You can be eligible for some waivers
even if you are Medicare eligible. We live in Idaho which I think is the one of the most
conservativ
Over the past several months Gabe, my son has been having BP
increasing in the afternoon when he is in an upright position. We treat it as
autonomic dysreflexia and the Bp goes down when he lies down. Gabe’s BP wont
go up until later in the day if his chair is tilted. It goes up to 90-100
Thanks Diane. I agree with you completely.
Lana
From:
[EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]
Sent: Monday, June 27, 2005 4:09
PM
To: quad-list@eskimo.com
Subject: [QUAD-L] Women
Presidents//Lori
I just don't think women
are biologically wired to be dip
I thought it was healed Definitely pain
in the Ass.
Lana,
Gabe’s mom
From: QuadPirate [mailto:[EMAIL PROTECTED]
Sent: Monday, June 27, 2005 3:16
PM
To: quad-list@eskimo.com;
Lana Baugh
Subject: RE: [QUAD-L] New Bed
I have that same
weird thing Lana on
Sounds good. Geter done
Lana
Gabe’s mom
From: Silas
Shelburne [mailto:[EMAIL PROTECTED]
Sent: Monday, June 27, 2005 6:46
PM
To: Lana Baugh
Subject: Re: [QUAD-L] New Bed
Hey Lana,
Iv had a place on
my coccyx ever scince I got hurt, had it healed once then
Mark,
Gabe has a regular hospital bed with a
ROHO mattress on it. Insurance came forward about 8 ½ years ago and offered to
buy. Overall it has worked really well. The only pressure sores Gabe has gotten
since then have been during hospitalization where they use air beds. Of course
we have
d the area healed very well. There are some things we just can't
really figure out and as long as it "aint broke, don't fix it"! BG
take care,
Dana
[EMAIL PROTECTED]
- Original Message -
From: "Lana Baugh" <[EMAIL PROTECTED]>
To:
Sent: Friday, Jun
Joan,
Thanks I’ll look it up. It sounds
like one product we looked at.
Thanks,
Lana
Gabe’s mom
From: Joan Anglin
[mailto:[EMAIL PROTECTED]
Sent: Sunday, June 26, 2005 2:13
PM
To: Lana Baugh
Subject: RE: [QUAD-L] computer
access
Lana
Don't know if yo
Jim,
I’m not sure Gabe could do this, but
will try anything. I believe Gabe has the right to try to access anything and
everything.
Thanks,
Lana
Gabe’s mom
From: Jim Lubin
[mailto:[EMAIL PROTECTED]
Sent: Friday, June 24, 2005 12:05
PM
To: Lana Baugh; 'Andrew
, June 24, 2005 1:14
PM
To: Lana Baugh; quad-list@eskimo.com
Subject: Re: [QUAD-L] back
again-help
Hi Lana,
Welcome back! Does Gabe's BP just go up when he is setting
up? If so you might want to check the tubing to his leg-bag for any
kinks. It may be that his urine flow is
Mark,
We haven’t ever used pseudoephedrine.
How do you use it?
Thanks, Lana
Gabe’s mom
From: tahouston
[mailto:[EMAIL PROTECTED]
Sent: Friday, June 24, 2005 12:56
PM
To: Lana Baugh
Subject: Re: [QUAD-L] back
again-help
While
I am lying down, own my BP averages
ssage---
From: Lana
Baugh
Date:
06/24/05 02:30:02
To: quad-list@eskimo.com
Subject:
[QUAD-L] back again-help
Hello again,
My name is Lana and my son Gabe is 32 and has a C4-5 SCI, 10 yrs
post. He also has other disabilities. He cannot participate righ
Ronnie,
The Fannie Mae is a great suggestion. Have you made
contact with your local Independent
Living Center.
They provide a variety of things. They may be able to help you find services
when you get out and into your house. They may also be able to help or refer
you to other agenci
-list@eskimo.com;
Lana Baugh
Subject: Re: [QUAD-L] back
again-help
Lana,
It's normal for
my blood pressure to be messed up, it hasn't been consistent
Is he getting
dizzy or nauseated while he lays down?
Is his
BP way up there?
he has so many health problems they won’t correct it until
nothing will move through.
I’ll visit your website.
Thanks,
Lana
Gabe’s mom
From: Andrew Crowe
[mailto:[EMAIL PROTECTED]
Sent: Friday, June 24, 2005 6:59
AM
To: Lana Baugh
Subject: Re: [QUAD-L] back
again-help
Mark
Bp starts moving up to around 90-95
diastolic. When he lays down it goes right back to 70s.
Lana
From:
QuadPirate [mailto:[EMAIL PROTECTED]
Sent: Friday, June 24, 2005 10:23
AM
To: quad-list@eskimo.com;
Lana Baugh
Subject: Re: [QUAD-L] back
again-help
Lana
Hello again,
My name is Lana and my son Gabe is 32 and has a C4-5 SCI, 10
yrs post. He also has other disabilities. He cannot participate right now.
Question: Gabe’s BP goes up in the afternoon around 3:00 everyday. When
he lies down it goes right back down. So it appears to be AD to me
Sharon,
Welcome to the quadlist. I don't post much. I learn a lot from
just reading. I also get some good laughs. I'm a mom. My son has CP and had his
injury at age 22.(surgery gone bad). He has some difficulties and has chosen not
to participate in the list. I have only met one other pers
Dillon,
My son had alot of pressure sores, even when he had a
quatro- ROHO. We were never able to control the pressure sores until He
got a bed that releived the pressure during his sleeping hours. The bed is
also a ROHO. It really worked for him. Good luck
Lana,
Gabe's Mom- C-5 9 years
What is mannose powder?
Lana
Gabe's Mom
My son, Gabe has a C4-5 injury. He is nine years post.
He is straight cathed about every four hours. He had a lot of bladder
problems, spasms, infections and pain.The doc was great however, she never
mentioned several things to us because she didn't think it was necessary or
that we didn't h
Testing- haven't been able to send-now have stopped receving.
Lana Baugh
[EMAIL PROTECTED]
Greg,
In some states there are funds available. It really depends on
the state. You need to contact your state independent living center and your
state Protection and advocacy agency. We live in Idaho and we have several
waivers that help. Right now I'm trying to get a track ceiling lift s
We have searched high and low and been all over the country
trying to resolve Gabe's pain. He lived in hell-a moaning sleep was the best for
his 1st year. These are just a few things we found.
The baclofen pump is implanted in the abdominal wall and a
small tube carries the baclofen dire
Recently I have seen discussions on pain control. I guess it's
always an issue. Gabe, my son takes 2400 mg of neurontin and it has helped.
However, the best thing has been his Baclofen pump. It controls spasticity, but
as an added benefit it calms the central nervous system down and controls
Does anyone out there have a PIE unit?
Lana
Hello again!
We left the list for a number of years. Now We're
back and I hope you still allow parents to participate. My son cannot
participate fully due to other disabilities. I will try and get him as involved
as he is willing too and can (This will be his decision)
My son's name is
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