Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Hi Simone, My husband Jerry has MSA and was diagnosed 5 yrs. ago with Cerebellar Ataxia and 2 yr. later changed to probable MSA (OPCA). I think any one of the caregivers could have written your letter. I can hear the frustration we have all gone through. The wish we all have to know the answers regarding how, when, what and where of this disease. I have been on the list for a approx a month now and have learned a lot from the others. One thing is for sure, everyone is different in regards to the disease, its progression and its time table for displaying symptoms. Some things are universal depending on whether your dad has OPCA first or Parkinson symptoms appearing first or Shy Dragger symptoms first. Go ahead and ask specific questions and give specific information and others with similar dx will answer. I am sorry to hear your dad is depressed as that makes it more difficult for you. Is he on medication for the depression? Joining one of the Sunday chats really helped Jerry. For the first time he saw that others had MSA as well. Although he can not type he relayed his questions for me to type and felt connected to others. Please remember to post your questions. Take care and God Bless you and your dad. Hugs, Jan (AZ- where the Sun and the Mercury rise each day) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Simone There is no specific timetable for MSA. The odds are that he will live from 2 to 15 years after diagnoses. Things that can help him maintain quality of life are: * Daily range of motion exercise (similar to arthritis exercise) which helps maintain some movement. * Careful attention to liquid intake (must swallow 64 oz of clear liquids per day - note caffinated drinks don't count) this helps prevent UTI's and infection in general * Proper diet - extra fruits and vegetables help control constipation problems * Remember that any sudden change for the worse is an indicator of some sort of infection - temperature is NOT a good indicator of infection until too late - infection can be UTI, blood (septis), pneumonia or even yeast. Remember that you MUST " Use it or lose it " with muscle tone. Attitude seems to help some people fight it better than others also. Accepting what you can do as a gift is better than worrying about what you have lost. My wife was able to get around in a wheelchair for almost seven years after she accepted the wheelchair and almost 12 years after diagnoses of a movement disorder. Take care, Bill Werre --------------------------------------------------------------------------------\ ------ janburg88 wrote: > Hi Simone, > My husband Jerry has MSA and was diagnosed 5 yrs. ago with Cerebellar > Ataxia and 2 yr. later changed to probable MSA (OPCA). I think any > one of the caregivers could have written your letter. I can hear the > frustration we have all gone through. The wish we all have to know > the answers regarding how, when, what and where of this disease. I > have been on the list for a approx a month now and have learned a lot > from the others. One thing is for sure, everyone is different in > regards to the disease, its progression and its time table for > displaying symptoms. Some things are universal depending on whether > your dad has OPCA first or Parkinson symptoms appearing first or Shy > Dragger symptoms first. Go ahead and ask specific questions and give > specific information and others with similar dx will answer. I am > sorry to hear your dad is depressed as that makes it more difficult > for you. Is he on medication for the depression? Joining one of the > Sunday chats really helped Jerry. For the first time he saw that > others had MSA as well. Although he can not type he relayed his > questions for me to type and felt connected to others. > > Please remember to post your questions. Take care and God Bless you > and your dad. > Hugs, Jan (AZ- where the Sun and the Mercury rise each day) > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
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