Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Hi Jan, good you found us. Not everyone left for Boston. I didn't. But on the other hand, I can do not much for you, as my experience is (thank God) not so large. I'm afraid that that will change in future and I'm happy to be a member of the list in case that time arrives. My attribution to the list is to cheer people up and try to pull legs while we chat. Please join us tonight! You find the details in the chat-reminders. Timo > For the past 2 hours I have sat here reading your messages. I feel > like I have been looking through a window, seeing and hearing people > I have never met but have been looking for over the past two years. > My husband was diagnosed four years ago with cerebellar ataxia and > three years ago that was changed to MSA. He is now in a wheelchair > unable to balance, is catheterized, has severe sleep apnea, was > hospitalized with pneumonia in Frebruary (in ICU w/ventilator), is > difficult to understand, has double vision even with prisms in his > glasses, has edema in his legs.....and the list goes on. The worst > part, no one seems to have heard of MSA. The best parts: he has the > most wonderful attitude and such an upbeat personality in spite of > this awful disease. And, I have now found others who understand and > share their knowledge. I feel like I have been silently screaming > for help for the last two years and now I have found that help. > Thank you. Jan> > > > > Quote Link to comment Share on other sites More sharing options...
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