Recent content by leslhart

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    Stem Cell Research

    Hi Leah, The right chair is one that reclines or tilts back. I can't sit without leaning back. I mainly use an office chair. As for neck braces, thats been tough to find the right one. Most neck braces are designed to keep your neck immobile. The problem I have is that I need to be able to...
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    Stem Cell Research

    Hi guys, As far as pain goes, The only time i feel any pain is when i flex or use a muscle too fast and it cramps or locks. For me the issue is more a matter of getting comfortable. I have lost a lot of muscle in my neck, and have to choose the right chair. When we go out it gets to be a...
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    Stem Cell Research

    Hi guys, I was involved is a stem cell trial three years ago in Vancouver. It wasn't embyotic stem cells, but my own stem cells filtered from my blood into a concentrated unit and then put back in. The purpose was to see if there was any side effects from this procedure. There was none. The...
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    New member looking for similar PALS

    Suzanna, I think when they say "you're doing well" they mean the progression is slow and you're adapting. They always tell me I'm doing well and I ask them "compared to what" He said a lot of ALS patients just aren't up to the mental challenge of it all. So if you need a walker...use it, if...
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    New member looking for similar PALS

    Hi Kim, I was diagnosed at 34, I just turned 40. It started with my right thumb. I have been on Rilutek since the begining. My progression is slow but constant and some what unpredictable. Starting in my right hand, you'd think my right arm would be useless by now, but thats not the case...
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    bathroom

    Hi guys, I have recently looked into this "problem". The ALS team here showed us Bidets that go on your existing toilet replacing the toilet seat. They look good and work fantastic. All you do is push a button. They had one at the clinic. I think thats the route I'm going. They run about six...
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    Jaw Problems

    Hi Billie, I went through a few bouts of "lock jaw". I t feels exactly like your jaw is out of alignment. Your bite is off, and it can be impossible to bite down or even open wide. Its awful. The only consolation, for me anyway, is that it wasn't permanent. I've had it once on my right side...
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    Rilutek questions

    My two bits, I was part of the Riluzol study, so I've been on it for 4 years now. My insurance covers the cost now. I've had no side effects so far. My progression continues to be slow, but like Al, it seems very fast to me. I was doing the complete cocktail which was vitamin e, coq10...
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    Wishing Everyone a merry christmas.

    Merry Christmas and Happy New Year everyone! "Forget your troubles, c'mon get happy" Les
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    hello

    Merry Christmas all, I too am finding this one difficult. I turned 40 today. Not exactly where i thought I'd be. O n the other hand when I was diagnosed 5 years ago, I wasn't sure I'd even make it, So I wish I hadn't wasted all that time worrying in the past. This is the first year that I...
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    sad news that has me very scared and depressed

    Patsy, As we live with this disease, I think most of us find a calm strength that we never new existed, at least I did. Some friends disappear, some stay or new ones step up to the plate. Some family is there, some not as much. What I have come to learn is that I don't waste my time worrying...
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    Jaw Chatter

    Granny, I agree with you completely. Not being able to eat changes your social life. Thanksgiving just isn't the same. Not being able to eat or talk really makes you a bit of an outcast. No more going out for dinner, or Sunday morning breakfast or even popcorn at the theater. The feeding tube is...
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    Jaw Chatter

    Hi Ron, The teeth chattering is normal for me too. Talking is difficult enough, this makes it even harder. But its usually only in the morning. Just one more quirky side effect of ALS. Les
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    Help with survey

    Great idea Irwin, I'm in as well! Les
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    pulmonary

    Hi Dar, For what its worth, my blood/oxygen levels showed very little change and my CO2 level went down since my last vist to the respiratory lab. I seem to have "levelled off" as he put it. I credit this to some "tweaking" of the bypap and mask. Stay positive, they told me in January that I...
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