Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Isn't just great at putting everything is order? Thanks for yet another bit of " education " as I read your posts to others. Jan > Greetings Byron! > > Sorry you have to be here, but hopefully you will find the support you > need here. > > Yes, a long-term care policy is vital for someone with MSA (the new name > for Shy-Drager). When my work offered it, shortly after symptoms > surfaced, I decided to purchase it. > > When to look into different housing? I would recommend now. Find out > what facilities are available now. Find out how long the waiting lists > are. Determine which set of facilities appear to have the best ongoing > care. Likewise be certain to make out wills and the like. > > Then continue to enjoy your life. Don't focus on the MSA. Why do I say > this? Well, you yourself mention the symptoms are progressing slowly. > Also you mention: > > I had difficulty in walking fast, in buttoning > clothes, and in tying my shoes. Occasionally, > I had slurred speech, hunted for words, and spoke > words that did not express my thoughts well. My > reasoning ability remained as sharp as ever. In > addition, I occasionally realized that I had not > taken a breath in a while, and I would gasp for air. > > It appears you have MSA-C, that is symptoms that start as Sporadic OPCA. > Or MSA-C (since it progressed into autonomic problems). You may want to > view the following pages: > > http://emedicine.com/neuro/topic671.htm Multiple Systems Atrophy > http://emedicine.com/neuro/topic282.htm OPCA (MSA-C) > http://emedicine.com/neuro/topic354.htm SND (MSA-P) > > Sporadic OPCA is the second item. But you will note that based on your > symptoms, it appears to have shifted quite clearly into MSA. Since it > started with problems with the cerebellum, it is considered to be MSA-C. > IF you actively control symptoms, then you stand a good chance of a > longer life expectancy. > > One word of warning. With MSA-C, you need to be very careful about > sleep and swallowing problems. The first leads to very poor sleep, > extreme fatigue, high blood pressure, and in extreme cases, death during > sleep. The second often leads to aspiration pneumonia, which is the > leading cause of death for someone with MSA-C. > > To test problems with sleep, you might want to visit the following page: > > http://www.sleepnet.com/sleeptest.html > > If you find yourself swallowing food incorrectly, please go have a > swallowing test done. There are specific therapies to help improve > swallowing problems. In extreme cases a feeding tube can be inserted > directly into the stomach. This greatly reduces the chance of > aspiration pneumonia. But that is most likely a LONG way done the line. > > And you will get an idea that it is time, when you find you are less and > less able to move around your own home. Be certain to discuss this with > your doctor / neurologist. They should be able to have you work with a > physical therapist to determine when it is time to move. > > Anyway, just some thoughts... > > > Regards, > =jbf= > > B. Fisher Quote Link to comment Share on other sites More sharing options...
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