[TMIC] computer desk, wheelchair friendly

[[EMAIL PROTECTED]]

Does anyone know of a brand, model, store, etc, where one could get a computer 
desk that works well with a wheel chair?  I have a friend with MS who is 
looking for one.  We live in Hawaii, but if he knew of a specific brand or 
model, he might be able to either order it or get a store to order it for him.  
Let me know if you have any ideas.
Thanks,
Sally

Re: [TMIC] Re: tmic-digest Digest V2007 #140

[[EMAIL PROTECTED]]

Bettie,
I found your message about pain really interesting b/c it implied that you at 
least HAD been working.  I have minimal pain - seldom take even Tylenol unless 
it's bad enough to keep me awake - and yet I haven't been able to go back to 
work since TM hit me!  I getting closer to going back - maybe part time, but 
I'm to there yet, after 2 years!  My problem hasn't been pain so much as 
fatigue and lack of endurance.  It's hard for me to imagine you working, when 
you also have the pain.  I guess it affects us all differently - as we've 
talked about before.
Sally

Re: [TMIC] Lyrica

[LadyNotes]

Gunny,
 
I have been on Lyrica for nearly a year now.  Without it  I wouldn't be able 
to function.  I tried Neurotin, and the whole gang of  other pain medicines.  
Lyrica was the only thing that worked for me.   I don't understand why your 
doctor would not prescribe it for you.  The  pain that we have is considered 
neuropathy.  I take 400 mg, twice a  day.  This is a pretty high dose, but it 
works for me.  Good luck with  your grievance.

Naomi
C-4 quad since July 2,  2005





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Re: [TMIC] OT OT help yet again

[Kevin Wolfthal]

Bernie,

I just read this message after I sent you an em.

I'm sorry your daughter is suffering so.  I don't
have children, but I'm sure it is the most difficult
thing to see your child go through this,

My thoughts and prayers go out to you and your
family.

Kevin





Bernard Pelow wrote:

*Dear Family and Friends,
  Once again I write to you in need of support and prayers. After a 
successful surgery last Tuesday, Laurie was allowed to come home on 
Monday. Well, yesterday she had to be taken back and admitted again as 
her body is not getting enough calcium. It was the most horrid 
experience in my life to watch my daughter lay on the bed in spastic 
convulsions, screaming in pain and not be ale to do anything to help 
her. This is going to be a lng hard road for her, an unknown road 
for both of us. We have no idea what to expect, and the doctors say 
they cannot give us definitive things to watch for. My daughter is in 
so much pain, and it hurts to watch this happen to her. So please 
please please pray for her to get well, without all this suffering. 
There is nothing in this world more important to me than my children, 
and they have done nothing in this life but be kind, generous, helpful 
people to all they know, meet, and love. This is too much for them.
   I have tried to be the stable, fearless, brave dad, but this is 
taking a terrible toll on me also. My anxiety is through the roof, I 
cannot sleep, I cannot eat, and if I do it comes right back up. The 
only doctor I have who takes Medicare tried me on Klonopin for the 
anxiety, but it gave me bad headaches, and did nothing for my anxiety 
or depression. They said they could give me nothing at all then, I 
would have to find a doctor (shrink) in order to get anything. Well, 
lo and behold, no shrinks are willing to take new Medicare patients, 
like that is something new. So I am at my wits end, and I also need 
your prayers, support, ideas or anything you can to help me. BTW, at 
least my daughter got into a program called MAP here, and they will 
pay for her hospital bills, meds, etc there is that saving grace 
at least. I know all of you have your own pain to deal with, and it is 
with some reservations I write this. It seems these past few months 
all I have posted for is asking help for me, I have been very unable 
to do all that I would like to do in helping old friends and new ones 
in the TMIC family. This is a continuous nightmare for all of my 
family, my other daughter and their mom (my ex wife) are at their ends 
also. But my ex wife and I have actually come together as a family 
unit to get through this, in itself another miracle of sorts. But 
please pray for all of us, especially Laurie; she has suffered enough 
for ten lifetimes in my eyes. Thanks to all of you who have helped 
with your messaged of encouragement and hope..

Blessings and Peace,
Bernie*

Re: [TMIC] OT OT help yet again

[Heather & Pieter]

Bernie,

My prayers and thoughts are with you and your family.  I know that if any of us 
could do more we would.  We are your TM family.

Heather in Calgary

  - Original Message - 
  From: Bernard Pelow 
  To: TMIC 
  Sent: Tuesday, May 08, 2007 11:40 AM
  Subject: [TMIC] OT OT help yet again


  Dear Family and Friends,
Once again I write to you in need of support and prayers. After a 
successful surgery last Tuesday, Laurie was allowed to come home on Monday. 
Well, yesterday she had to be taken back and admitted again as her body is not 
getting enough calcium. It was the most horrid experience in my life to watch 
my daughter lay on the bed in spastic convulsions, screaming in pain and not be 
ale to do anything to help her. This is going to be a lng hard road for 
her, an unknown road for both of us. We have no idea what to expect, and the 
doctors say they cannot give us definitive things to watch for. My daughter is 
in so much pain, and it hurts to watch this happen to her. So please please 
please pray for her to get well, without all this suffering. There is nothing 
in this world more important to me than my children, and they have done nothing 
in this life but be kind, generous, helpful people to all they know, meet, and 
love. This is too much for them.
 I have tried to be the stable, fearless, brave dad, but this is taking a 
terrible toll on me also. My anxiety is through the roof, I cannot sleep, I 
cannot eat, and if I do it comes right back up. The only doctor I have who 
takes Medicare tried me on Klonopin for the anxiety, but it gave me bad 
headaches, and did nothing for my anxiety or depression. They said they could 
give me nothing at all then, I would have to find a doctor (shrink) in order to 
get anything. Well, lo and behold, no shrinks are willing to take new Medicare 
patients, like that is something new. So I am at my wits end, and I also need 
your prayers, support, ideas or anything you can to help me. BTW, at least my 
daughter got into a program called MAP here, and they will pay for her hospital 
bills, meds, etc there is that saving grace at least. I know all of you 
have your own pain to deal with, and it is with some reservations I write this. 
It seems these past few months all I have posted for is asking help for me, I 
have been very unable to do all that I would like to do in helping old friends 
and new ones in the TMIC family. This is a continuous nightmare for all of my 
family, my other daughter and their mom (my ex wife) are at their ends also. 
But my ex wife and I have actually come together as a family unit to get 
through this, in itself another miracle of sorts. But please pray for all of 
us, especially Laurie; she has suffered enough for ten lifetimes in my eyes. 
Thanks to all of you who have helped with your messaged of encouragement and 
hope..
  Blessings and Peace,
  Bernie



--


  No virus found in this incoming message.
  Checked by AVG Free Edition. 
  Version: 7.5.467 / Virus Database: 269.6.6/794 - Release Date: 5/8/2007 2:23 
PM

[TMIC] OT OT help yet again

[Bernard Pelow]

*Dear Family and Friends,
 Once again I write to you in need of support and prayers. After a 
successful surgery last Tuesday, Laurie was allowed to come home on 
Monday. Well, yesterday she had to be taken back and admitted again as 
her body is not getting enough calcium. It was the most horrid 
experience in my life to watch my daughter lay on the bed in spastic 
convulsions, screaming in pain and not be ale to do anything to help 
her. This is going to be a lng hard road for her, an unknown road 
for both of us. We have no idea what to expect, and the doctors say they 
cannot give us definitive things to watch for. My daughter is in so much 
pain, and it hurts to watch this happen to her. So please please please 
pray for her to get well, without all this suffering. There is nothing 
in this world more important to me than my children, and they have done 
nothing in this life but be kind, generous, helpful people to all they 
know, meet, and love. This is too much for them.
  I have tried to be the stable, fearless, brave dad, but this is 
taking a terrible toll on me also. My anxiety is through the roof, I 
cannot sleep, I cannot eat, and if I do it comes right back up. The only 
doctor I have who takes Medicare tried me on Klonopin for the anxiety, 
but it gave me bad headaches, and did nothing for my anxiety or 
depression. They said they could give me nothing at all then, I would 
have to find a doctor (shrink) in order to get anything. Well, lo and 
behold, no shrinks are willing to take new Medicare patients, like that 
is something new. So I am at my wits end, and I also need your prayers, 
support, ideas or anything you can to help me. BTW, at least my daughter 
got into a program called MAP here, and they will pay for her hospital 
bills, meds, etc there is that saving grace at least. I know all of 
you have your own pain to deal with, and it is with some reservations I 
write this. It seems these past few months all I have posted for is 
asking help for me, I have been very unable to do all that I would like 
to do in helping old friends and new ones in the TMIC family. This is a 
continuous nightmare for all of my family, my other daughter and their 
mom (my ex wife) are at their ends also. But my ex wife and I have 
actually come together as a family unit to get through this, in itself 
another miracle of sorts. But please pray for all of us, especially 
Laurie; she has suffered enough for ten lifetimes in my eyes. Thanks to 
all of you who have helped with your messaged of encouragement and 
hope..

Blessings and Peace,
Bernie*
begin:vcard
fn:" If you help only one soul to find itself, if you comfort only one mourner, if you heal only one sick person, then the whole of your earthly life is justified. How privileged you are to be aware of the tremendous power that is around and about you, that enfolds you, guards you, directs you and ensures that you will continue to unfold your latent divinity and the gifts which are your cherished possession."
n:;" If you help only one soul to find itself, if you comfort only one mourner, if you heal only one sick person, then the whole of your earthly life is justified. How privileged you are to be aware of the tremendous power that is around and about you, that enfolds you, guards you, directs you and ensures that you will continue to unfold your latent divinity and the gifts which are your cherished possession."
adr;dom:Apt. #203;;1941 Gaston Place Drive;Austin;Texas;78723
email;internet:[EMAIL PROTECTED]
tel;home:512-926-5475
note:Thomas Jefferson said it best,--"Those that trade freedom for security deserve neither freedom nor security"
x-mozilla-html:TRUE
version:2.1
end:vcard

[TMIC] exercise

[Akua]

Todd
thanks so much for this. I won't get the video as I'm only dvd 
capable, but am inspired by the idea and will seek other sources for 
sittting exercises.


People  have chided me-- why don't i have an motorized chair--- you 
should use a motorized chair. I am grateful that 've resisted.


The only exercise i get is rolling myself around and this compared to 
the many hours i spent gardening and the miles a day i sued to 
walk--- it's the least i can do.


The thing is, I weigh much less than i used to. My nursing home time 
with it's fake inferior food that i refused to eat led me to lose 
about 60 pounds. I've gained  some of it back since i am able to feed 
myself more healthfully again, but the inability to buy food with the 
ease  I used to  has kept my weight down.
It is so hard for us to do any exercise at any stage of TM.  I don't 
know if this will help or not, but this is a link that we have 
shared here.

Here is the site for the sitting exercise video.

http://www.richardsimmonsstore.com/index.php?product=VHS01



Light and healing,
Akua


--

http://www.healrecover.blogspot.com
http://www.akualezli.blogspot.com

[TMIC] Re:Making TMC Known

[Akua]

 pretty well known ?!!!?

That's not my experience.
I want help more than to help and it's taken a lot  of effort to get 
information

and manage my own care.

By the way - I have written Oprah

It's pretty well known now pal. When I first got Dr. Kerr involved 
it wasn't, but now it is. If you want to help, see if you can find 
people who are willing to make donations to my coalition. All the 
funding goes to Dr. Kerr at Hopkins. Here's my website, check it out 
Disabilitycoalition.org.


Gunny





 >>   Too bad that TM isn't as well know as some of the other diseases.


I wonder if there are ways to make this happen?

 >Any ideas as to places we should write? funding efforts to promote?
 >
 >http://www.healrecover.blogspot.com
 >http://www.akualezli.blogspot.com




--

Re: [TMIC] Diabetes and inability to do much exercise

[Todd Tarno]

  Hildred,
  It is so hard for us to do any exercise at any stage of TM.  I don't know if 
this will help or not, but this is a link that we have shared here.
  Here is the site for the sitting exercise video.
   
  http://www.richardsimmonsstore.com/index.php?product=VHS01
   
  When you get to feeling better, let us know what worked for you.
  Hugs & Prayers,
  Todd in CC, TX

[EMAIL PROTECTED] wrote:
  Is anyone here diabetic.  I have been been recently diagnosed as 'insulin 
resistant' and put on Byetta which really, really curbs my appetite.  To bad I 
can't stand up to weigh.
   
  What kind of exercises can I do since I am stuck in bed?
   
  My dr also said I should eat between 150 and 180 grams of protein a day and 
that means drinking those protein drinks but I would still have to drink four 
of them and they are not cheap.  I don't have room in my stomach for normal 
meals and all of these protein liquids.
   
  I think he is not only treating my diabetes but preparing me for the lap-band 
surgery I want to get if the Bariatric Center here ever get Medicare approval.  
I know if I can lose some weight this diabetes will go away as I am hardly 
diabetic.
   
  Anyone here have the same problem, any ideas or suggestions?
   
  Thanks!
   
  Hildred in NC
  TM since '76




-
  See what's free at AOL.com. 

Re: [TMIC] allodynia

[Todd Tarno]

My problem is that when I have my feet up on the ottoman and someone wearing 
shorts or a lab coat come up and rubbing the edge of the cloth my toes.  It 
will send a shock up my leg and making my foot spasm.  Then want to know why 
I'm afraid of people coming up to me.  
  Todd in CC, TX

Gillian Clark <[EMAIL PROTECTED]> wrote:
   
Sally it's hypersensitivity to touch, or things that hurt that shouldn't 
and vice versa.  pHranque will probably give you a much more medical 
description though. If you stuck a pin in me, I might not feel it but if 
you rubbed a cotton wool ball over me ever so gently it would cause unbearable 
pain, which is why my clothes hurt me so much.  Going nude isn't an option 
either because a bit of a breeze, a splash of water, an   animal rubbing past, 
all creators of bloody pain.
   
  The pain itself is the freeze/burn that you would have heard us speak of 
often.
   
  Gilly
  
I've looked up 'allodynia', but still don't really understand it.  I've 
never heard of it before, and now 3 of you have just mentioned it.  Can you 
give me an example of how it works?
  Sally

[TMIC] Help

[natalie mizenko]

Hi to all,
  Does anyone in the group live in Arkansas and go to a pain dr. in North 
Little Rock, or Little Rock?  I am on the search of a pain dr. for my pain 
meds.  I don't have much luck w/ them & in my experience they are becoming here 
more & more like "Gods".  My pcp dr. faxed info about me having a stimulator & 
a morphine pump & etc. to a new pain dr. in our little town (Hot Springs, AR).  
The nurse called and asked me about the stim. and pump.  I told her the stim. 
had been removed so I could have MRI's this past year and the morphine pump 
went dry while I was at Baylor and I planned to have it removed.  I told her I 
was on patcvhes at the present.  I NEVER was even given a consultation appt. w/ 
this dr. and he turned me down & said I needed to go to a neurologist.  I've 
been in the same pain clinic for 15 years til this month & since my pump is 
empty, the pain dr. I was using canceled me out.  He also got mad at me when a 
back dr. in the hospital gave me a pca pump to control
 my pain & it made him furious last year.  It's a mess.  Natalie

 
-
We won't tell. Get more on shows you hate to love
(and love to hate): Yahoo! TV's Guilty Pleasures list.

Re: [TMIC] Re: tmic-digest Digest V2007 #140

[Kevin Wolfthal]

Bettie,
I hope you're right about something that helps.  I have not had one doctor
offer me anything for my pain, and I've asked.  They say I'm taking too
many things already.  I'm only taking BP medication and Xanax.  The
doctors around here are overly conservative.  So I take Tylenol, and it
does almost nothing.
Kevin







[EMAIL PROTECTED] wrote:
I've had TM for 11 years and, yes, the pain gets worse (for me 
anyhow).  I had to go on disability as I could no longer function at 
work.  The pain is 24/7/365, of which maybe 50% is tolerable and the 
other 50% is very, very bad.  The pain has affected my thinking, my 
gait, and has made life miserable.  I keep hoping that relief is just 
around the corner.  With the research they are doing, I'm sure 
something will be developed that will help all of us.  With such a 
beautiful day outside, no one should suffer the residual affects that 
TM brings.
 
Bettie in sunny Virginia






See what's free at AOL.com 
.

Re: [TMIC] Another Symptom

[JHarper33]

 
I believe spasticity involves rigidity rather than flopping or  jerking 
movements. From the National Institute of Neurological  Disorders:
 
'Spasticity is a condition in which certain muscles are  continuously 
contracted. This contraction causes stiffness or tightness of the  muscles and 
may 
interfere with movement, speech, and manner of  walking."
 
_http://www.ninds.nih.gov/disorders/spasticity/spasticity.htm_ (ht
tp://www.ninds.nih.gov/disorders/spasticity/spasticity.htm) 
 
Barbara H.
_http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) 
 
In a message dated 5/4/2007 8:34:47 PM Eastern Daylight Time,  
[EMAIL PROTECTED] writes:

Don't they call this  spasticity..?
 
Bobberino

From: _Trudy _ (mailto:[EMAIL PROTECTED])   To: _'Natalie Boyles'_ 
(mailto:[EMAIL PROTECTED])  ; _'Alton  Ryder'_ (mailto:[EMAIL PROTECTED])   
 
Cc: [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED])  ; 
[EMAIL PROTECTED] (mailto:tmic-list@eskimo.com)  
Sent: Friday, May 04, 2007 1:07  PM
Subject: RE: [TMIC] Another  Symptom



I too have  had my arms flail away when I  have fallen asleep in a chair 
watching  the awful news or reading the even more depressing paper… I don’t 
think 
it  happens when I am flat in bed. Tho I have been known to give my husband a 
 big kick once in awhile…   Of course he probably deserves  it!!  J … He is 
my  hero…. 
Trudy 
 
  

 
From:  Natalie Boyles [mailto:[EMAIL PROTECTED] 
Sent: Thursday, May 03, 2007 5:48  PM
To: Alton  Ryder
Cc: [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED]) ; 
[EMAIL PROTECTED] (mailto:tmic-list@eskimo.com) 
Subject: Re: [TMIC] Another  Symptom
Okay you guys, you sound like my  husband and he is healthy --- I wonder. He 
flaps his arms and jerks his legs  in his sleep so badly, I must leave the 
bed.  If you find an answer to  this dilemma please let me know about it. I am 
tired of being beaten.   
Natalie 
 
On 5/3/07, Alton Ryder <[EMAIL PROTECTED] 
(mailto:[EMAIL PROTECTED]) >  wrote: 
I have something  similar.  Sometimes, when I am lying down during the day 
and I  start to nod off, both arms will fly forward and the left leg might jerk 
 
towards my head. Not always, but it always wakes me.It  doesn't happen 
when I go to bed. If either hand is holding  something,  that hand will not 
participate.
Alton, who thought this unique and now no  longer  









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Re: [TMIC] Actiq

[[EMAIL PROTECTED]]

> Hi everybody -- has anyone ever tried Actiq (fentanyl) for TM pain?

I was on Fentanyl patches for a month.  It made me a zombie, but didn't help 
the pain

F

Re: [TMIC] detromethorphan

[[EMAIL PROTECTED]]

> After  reading your intersting comments on this drug, I looked it up and can 
> only find DEXTROMETHORPHAN.  


Someone Stole the X 

Dextromethorphan is right handed morphine.

It was discovered looking for a new analgesia.  It didn't work on regular pain, 
but it stopped a persistant cough, so is used for cough and colds.

Someone discovered that it decreased neuropathic pain.  Christine Sang at 
Harvard has done studies on it's effects.

hope that helps

F

[TMIC] Re: tmic-digest Digest V2007 #140

[Bettie5619]

 
 
I've had TM for 11 years and, yes, the pain gets worse (for me  anyhow).  I 
had to go on disability as I could no longer function at  work.  The pain is 
24/7/365, of which maybe 50% is tolerable and the  other 50% is very, very bad. 
 
The pain has affected my thinking, my  gait, and has made life miserable.  I 
keep hoping that relief is just  around the corner.  With the research they 
are doing, I'm sure  something will be developed that will help all of us.  
With 
such a  beautiful day outside, no one should suffer the residual affects that 
TM  brings.
 
Bettie in sunny  Virginia





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RE: [TMIC] Detromethorphan

[Neil McNeil]

Hi Sandy,

I took part in the Dextromethorphan Study conducted at the Brigham Womens 
Hospital in Boston during 2005. It was a two part study involving 
dextromethorpan at various doses over the course of almost a year and IV 
Lidocaine during four seperate stays at the hospital.
As a lab rat I was never quite sure what dosage I was taking but there were 
points in the study where I felt I was getting better pain relief. I was 
talking gabapentin all along as well.
The people at BWH were terrific and the work being done by Dr. Christine 
Sang and her staff is very important. I was happy to do my small part by 
being a lab rat. The Dextromethorphan did not provide the much sought after 
"eureka moment" for me but it is worth a try.


Best wishes to all,

Neil
( in NS)



From: "Sandy Heidel" <[EMAIL PROTECTED]>
To: "TM list" 
Subject: [TMIC] Detromethorphan
Date: Mon, 7 May 2007 10:07:55 -0600

Yes, the cough syrup.
I have a friend who has spinal cord damage from an accident and has 
intermittent infections and inflammation. His ongoing problems are very 
much like TM although caused by a specific trauma to the column and cord.  
His brother and sister in law are both doctors, specialists who do both 
treatment and research. They recently tipped him to  a study using 
dextromethorphan (over the counter) to supplement his regular pain drugs. 
He avoids taking the drugs as much as possible due to the fuzzy brain 
feeling he hates.  But he said the dextro has reduced his use of pain drugs 
by 50%! He said the dextro does not cause drowsiness or any other side 
effects (to him).
He said the study he read said the path the drug follows in your system is 
a direct line to the spinal cord where it acts on the nerve fibers to 
settle them down.  Sounds good to me!

Anybody else every try this??
Sandy
In Wisconsin where my first turkey season has come and gone without a bird 
to brag about.I have another season in two weeks so stay tuned.


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