Larry,
One thing nobody mentioned is to sleep at night with your legs in a frog
position. That is with your knees bent and legs apart. It will keep air
circulating and your skin dry in your sensitive area. Every little bit of
goodness
helps. Good luck with that tough decision. Do you live
Actually I disagree. Start with the hotel management. If the response is
inadequate, then go to the chain CEO. If this is inadequate, then go to the
press. If you initially antagonize and threaten the hotel, you are less likely
to
be able to amiably work with them to fix their problems. To
Naomi,
I sure hope you figure something out. It sounds like I'm the only one who
uses an automatic page turner. For me the investment was worth it. I use it
everyday and read 1-2 novels a week in addition to magazines. Let me know when
you're reading again, I'd love to discuss good books.
Hi Naomi,
This is the automatic page turner I use - _http://www.touchturner.com/_
(http://www.touchturner.com/) . If you have no arm movement at all like me, it
has
a sip-and-puff switch option. I eventually changed this switch to a motion
sensor I operate with my cheek. I love to read
Happy birthday, Danny! I too just turned the big 5-0 recently, it's really
just another year, another number. But enjoy your day! You are in my thoughts
Monday.
Sandy
No, but have you tried natural Senna?
Sandy
An excellent letter! You write exceptionally well Bill! Plus you've taken
action against an injustice instead of just taking it laying down and doing
nothing. I'm shaking your hand!
Sandy
All techniques don't work for all people. Two techniques were described here
that work for us - using your clothing to push you back in the chair and
pushing your knees. I've used both and find pushing the knees infinitely more
comfortable and much easier for my aides. But both work. Simply
W, your perspective is as a caregiver rather than as a quad, right?
Sandy
Is your research and survey for spinal cord injury survivors only or does it
also include quadriplegics from other causes?
That's how I do it, someone pushes on both knees as I sit in the chair.
Works every time. And you don't have to readjust clothing and wedgies out of
your
crack.
Sandy
---BeginMessage---
We need your letters! Take a few minutes and write a letter to Nassau County's
Director of the Office o/t Physically Challenged. Let its director, Don
Dreyer, know your ideas and feelings about this idea for a museum about
disablity. His office is very excited about this
I saw the report too, interesting. If it's not new, W, why aren't they more
available and known about??
Sandy
A guy named Bob Mauro has a dream to start a Disability Museum. And he's in
the process of making it happen. He's looking for ideas and suggestions. See
the website - _http://www.geocities.com/ram9872002/dremmuse.htm_
(http://www.geocities.com/ram9872002/dremmuse.htm)
Sandy
The link must have a temporary problem. I accessed it earlier today but not
able to now. Please try later.
Sandy
In my home, all my essential medical equipment is plugged into an outlet
that is backed up by the generator. So when the power goes out no one is
frantically looking for the right outlet. Everything automatically comes on
via
the generator. Makes more sense to me.
Sandy
But be careful about putting too much between you and the mattress, it
defeats the benefits of the mattress.
Sandy
There are many types of generators. When we invested in one about 3 years
ago, we decided to provide backup power not just for my essential medical
equipment but for most of the house. It has a direct feed into our gas line and
automatically turns on during an electricity power outage
I don't live in a nursing home. There are no such requirements in a private
home. Of course you can mark your outlets as emergency if you are anally
inclined. Our generator powers the refrigerator, freezer, microwave, numerous
outlets, in addition to my ventilator, suction machine, and
They were regular tea bags that were thoroughly wet through and through.
Sandy
This may sound weird but I was told to put tea bags on my sore nipples when
I first started breastfeeding (many years ago). It worked. Don't know why...
Sandy
W, what is the point? We live in a democracy and funds are allocated in a
somewhat judicious manner. You asked about the Iraq war, I ask, hypothetically,
about money used for space exploration, climate predictions, all sorts of
memorials, zoos, historical preservations, etc, etc, etc. It's
Dave, what's the CBA program?
Here's an article about Special Needs Trusts from Quest.
_http://www.mdausa.org/publications/Quest/extra/qe13-6_special_trusts.html_
(http://www.mdausa.org/publications/Quest/extra/qe13-6_special_trusts.html)
Sandy
Hey all,
I rely on agency help for all my care. Of course nobody wants to work on
major holidays like Thanksgiving, Christmas, and New Year's, especially with
the
agency. Do any of you use agencies that guarantee coverage or is your
coverage ultimately your responsibility? What do you do
Beautiful!! I am having 3 young Marines here for Thanksgiving dinner, they
are too far from home to enjoy the holiday with their families. Yes, remember
our young men and women serving our country!
Sandy Stuban
Lieutenant Colonel, Retired
US Army
Welcome back Dave and keep fighting. I think we all know a little bit about
being way down in the basement. Keep a good attitude, it's good for the immune
system! Sandy
Mydoctor also orders antibiotics for me to keep on hand at home for a
UTI. When I have to use it, I email her and she documents it in my record and
sends another antibiotic for next time. We have a great relationship. And yes, I
get the flu shot every year, just had it Tuesday. We all should
Mark, I believe it was a doctor not a nurse who pulled Bobbie's skin off.
Give the blame to the right knucklehead.
Sandy
Here's what works when you have a bed buddy. I use a single specialty
mattress on a simple hospital bed frame. Then I have aregular single bed
pushed right beside which makes a king size bed. I use single fitted sheets for
the two beds, and king size upper sheets and comforter on top to
All I can say is every time I have spent time in the hospital, I have been
terribly disappointed. I'm sure all of us have horror stories. My greatest
disappointment is that both doctors and nurses really don't know how to address
the daily needs of quadriplegia or appreciate the consequences
Ours in Virginia have the same services - lots of audio books and free
delivery for the disabled. Check the website of your county library.
Sandy
Dennis,
You could check with the ALS Association Chapter in your area. I know your
son doesn't have ALS but many many families advertise selling their vans through
their local Chapters (ALS has a very high mortality). My local Chapter
advertises 6-8 vans every month. You can find the
What brought this up, W? Are you around a smelly chair? Keeping your chair
clean is like keeping your house clean. Just do it! Sandy
And if it's impossible to clean your house yourself, someone does it for
you, right? The same applies to your chair. Your chair is your house and
reflects your character to the community. Sandy
Based on what everyone said it sounds like air is the way to go as opposed
to gel, foam, or sand. Right? Sandy
This article is excellent! I take it you've had this done. What about the
others? Sandy
Hey gang,
I need a new seat cushion. I don't like what I currently have. What do you
recommend that's REAL good? Thanks as always! Sandy
Silas,
I get so cold too. In the bathroom I use a portable heater. And when I
feel chilled to the bone, I use a heating pad over my upper legs and lower
abdomen in my chair. That gets me back to normal! Sandy
Remember if you take iron it will make you constipated so anticipate it by
taking something. Constipation will only aggravate the situation. Sandy
Thanks Lori! It's good to know it's not just me! Sandy
I have a Dodge grand caravan with a lowered floor and an electric side ramp
(Baer). It is set up so I sit in the passenger position secured with EZlock.
When I first got it I had a smaller chair. Now I'm having trouble turning the
corner from the ramp to the passenger position. Any
Sorry, it's a Braun. I'm going in face first, maybe I should try backward
up the ramp. Thanks Wal! Sandy
Yes I have the kneeling operation. Going in backward is worth a try. I'll
let you know! Sandy
The same reason they call congress CONgress instead of PROgress. Sandy
He sounds like he has a death wish. Who travels without battery chargers?
Plus most of us are tuned in to our bodies big time so he had to know his lungs
were full of gunk. His actions and decisions make no sense. W, you have the
patience of a saint! Sandy
It reminds me of a joke. Why do dogs lick their balls? Because they can!
Sandy
Stunt, are you serious?? Is this our W aka Wally?? Who is the lady in the
chair? You are quite the sleuth!! Sandy
I would love to be able to associate a face with a name. Do any of you have
a picture? Here is me and my son. Sandy
W, why are you so enigmatic? Nobody knows anything about you but you always
have comments and advise. You're not a quad but you're on this list. I, for one,
would like to know your story. I'm all German. Sandy
Ah, Baumholder. I spent 3 years in Augsburg in the Army. Sandy
I think we should respect Jim's request. Sandy
I took a weekend trip to the Poconos for my sister's wedding. It was at a
victorian bed and breakfast. I knew there were steps getting into the building
and I was prepared to struggle with a portable ramp but when I arrived I was
surrounded by four big (good looking) guys who carried me in
Over the years I've noticed that spouses respond to our paralysis by either
being 110% supportive or by checking out. That's tough. When I became paralyzed,
my husband checked out. He lives in the basement and I sometimes don't see him
for days. It took a long time to adjust to a situation I
That's great Linda! There's more of us than the boys thought!! Sandy
Yes Lori, I have noticed the imbalance of male to female. I'll do my best
to shed some feminine perspectives, for whatever it's worth! Ha! Sandy
Obviously we sit on our butts all day. So when we get our period, it can be
a real pain. Does anyone have tips to manage this a bit easier? (Sorry
guys!)
Sandy
Lori, can you put them in yourself? Sandy
Yes, I use caregivers extensively. Here is my situation if it will help.
Level of
injury.
C1 vent
Average
caregiverhours weekly.
120 hours a week
Hourly rate (or rates if different i.e. CNA versus
RN).
LPN $24/h
CNA $14/h
Source of payment (self funded, insurance, Medicaid
waiver,
"Keirstead is working with human embryonic stem cells to treat spinal cord
injury. He has received funding for his lab from Geron, which has an exclusive
license of Keirstead's patents and aims to start
human trials on spinal cord injury as soon as next year."
Excellent!
Potential is the key word - whether 23 or 46 chromosomes.
If we talk about the "potential" of 5-day old, 200 cell, unimplanted
zygotes, then let's talk about the "potential" of an individual sperm. Isn't it
the same potential? Where do you draw the line? It's really pretty ridiculous.
It's time to use common sense. Those ready-for-destruction
I'm wondering if anyone has ever been in a clinical trial. It does involve
a certain amount of risk and the possibility of receiving a placebo. I did once.
Sandy
Ditto for ALS. But for ALS there is ABSOLUTELY NO treatment or medication.
I am paralyzed up to my eyeballs and it never stops. But do I love life? Yep! I
have an 11 year old son I absolutely love, I'm here for him. And when stem cells
start to replace neurons, I'll be there even if rehab
I use an LP 10 too. When I go to the hospital I always use my own
ventilator. The LP 10 is more a home ventilator and I'm not surprised most
hospitals don't use them. I have asked the RTs at the hospital I use to be
inserviced on home ventilators so they can always be prepared. They have
Brien, you are so right. I would be so happy to have back even a little of
what I lost. Little things to maybe everyone else but major things to me, like
moving my head, moving my lips, etc. I'd be happy to start here. I'd be
ecstatic! Sandy
Dave, you said "For the sake of peace on the List, we have put the issue to
rest in our posts for now". Maybe you can explain that. What "peace"? And who
are "we"? Personally I would rather talk about stem cells and other
issues pertinent to quads than Walmart. Maybe I'm at the wrong place.
John, I wish I was part of that conversation. It seems people have become
numb since then. I have watched and waited for a long time... and nothing. I
read about the work in China and thought "nope". Any time a scientist is
secretive about his methods, it raises a red flag. But Johns Hopkins
You can watch and hear the live Senate debate on Cspan NOW at http://www.c-span.org/watch/cs_cspan2_rm.asp?Cat=TVCode=CS2
Personally I blame no one. The difference is do you passively accept your
plight or do you actively pursue avenues that could improve their life? Everyone
is different. Some are content to accept the status quo no matter how unpleasant
despite the potential improvements. Sandy
Now there's an example of not passively accepting the status quo. Go for
it! Sandy
Well, the alternative to being positive is being a miserable, sorry,
negative pessimist. Life is too short. Chose. Sandy
Lately there have been several posts about stem cells that generated NO
discussion. STEM CELLS GROW NERVES! It can change our life in our lifetime! I
feel no passion, no fervor, no excitement from this group. There are more
discussions about Walmart. I don't understand it. I just wonder
I too have watched the research for 11 years. I know the difference between
the scams and legitimate research. But I felt no hope in all these years like I
do now. Something new happened last week that had never been done before. And I
bet human clinical trials are not as far off as you
This is important stuff! You know, last week Johns Hopkins reported
"growing" neurons using stem cells... all using private funds. Imagine what
could be done with public federal support! I just emailed my senators using LQ's
link, it's easy. Do it! We have strength in numbers!! Sandy
ALS
Start a book club and invite people to your place. Sandy
ALS 95, vent 01
At your first session you should discuss JOINT goals. Like KK said, it's
your body! Sandy
But we are not all SCI. I really wouldn't necessarily go to a SCI web site
just as most here wouldn't go to an ALS site. Maybe it's just better to include
our basic info after our name. Sandy
ALS 95, vent 01
I used Fentanyl patch for a short time and had no problems at all except
constipation. Ha! Sandy
Yes it was a cow. Did you read this? http://hosted.ap.org/dynamic/stories/S/SPAIN_RUNNING_OF_THE_BULLS?SITE=OKTULSECTION=HOMETEMPLATE=DEFAULT
---BeginMessage---
Yes it was a cow. Did you read this? http://hosted.ap.org/dynamic/stories/S/SPAIN_RUNNING_OF_THE_BULLS?SITE=OKTULSECTION=HOMETEMPLATE=DEFAULT
---End Message---
I have found you can't live in the past. You can't dwell on what could have
been or you will die of depression and a broken heart. In the short time I have
been part of this group, I have made some interesting observations. At first I
sat back and listened to everybody. I found all of us
Hi Kel,
I love reading too but I have no movement below my neck. I use an automatic
page turning machine but paperbacks don't work on it. The books that work best
are hard cover library books that have been read many times. Here is the site -
http://www.touchturner.com/
If he insists on
Thanks for letting me know, W. I haven't met Linda yet. I can honestly say
I am still alive because I'm a nurse, an ICU nurse. The people who think nurses
are "bad patients" are the ones who border on incompetence themselves. Here's an
example of many I could tell you: a new "nurse" is with
Welcome Angelique! I am also a vent dependent quad, 49, living in Fairfax
Virginia. I'm also an RN. We can talk any time! Sandy
I think the idea of packing it is so it heals from the inside out instead
of creating a pocket of pus. As it heals it will push the packing out. And...
waalaa...
Sandy
Fairfax, Virginia
Sandy
Steve,
Mine is a DFS 2. I can't exactly tell you how much it cost, I am a veteran
so the VA paid for it. But I can give you an email address for a sales rep. [EMAIL PROTECTED]Sandy
Welcome back, Rick. Where have you been? I am also a quad on a vent, but
only since '01. There is an ALS chat room that is active and many of us use
ventilators. Maybe you want to check it out - http://client1.sigmachat.com/sc.pl?id=144320.
Anyway, it's good to meet you! Sandy
I operate my computer with a motion sensor placed next to my cheek - http://www.words-plus.com/website/products/input/istswtch.htm.
I can't move anything else. I've used it about 6 years now and I'm very happy
with it. Sandy
I don't have a SCI but I am a quad equivalent to C2. 11 years. Sandy
[EMAIL PROTECTED]
What do you guys do about a mattress when you make that overnight trip??
Amitriptyline can slow the gut and cause distention and bloating. I stopped
it for that reason. Sandy
I know specifically about Northern Virginia Community College, http://www.nvcc.edu/, a large school with about
38,000 students enrolled. But ask at colleges in your area. Even though their
human resources department may not advertise a job opening as for online
instruction, ask. Many are
If anyone lives in Virginia, this web site is very clear about who
qualifies, http://www.fairfaxcounty.gov/dta/tr_re_faq.htm.
All disabled
Another job option is teaching online courses for colleges, universities,
or community colleges. Many are transitioning to offer more courses like this to
their studentsand are looking for adjunct faculty.
Silas,
It's very easy to set up and use but it's best to use where you don't move
around too much. It's real sensitive so if you inadvertently move or are jolted
around it will pick up every movement, intentional or not.
Sandy
It's an infrared motion sensor switch made by Words+. http://www.words-plus.com/website/products/input/istswtch.htmSandy
One of the problems is we can't go to others' homes because they are not
wheelchair accessible. So a couple years ago I started a book club and it's
still going strong. They put it their calendar and everyone shows up and has a
good time. Sandy
KK,
I use a motion sensor placed beside my cheek. Works great! Sandy
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