Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Gail, Welcome to the list. We do know about the trials and tribulations of MSA. My wife was in a wheelchair at about 5 years (1995) past a diagnoses of Parkinson's (1990) and about 6 months past a dx of MSA (1995). However that was 7-8 years past first signs of the disorder (1987-88). 6-9 years is not a reasonable timeframe. A more reasonable time frame is 2-27 years with about half living more than 9.5 years from diagnoses. Stick with us and keep us up on what is happening and we can probably give you pointers that will help get a few more years than " average " . Things that will kill MSA patients are: Infection (all types, urinary tract (UTI), pneumonia, blood and yeast) Warning, MSA patients often run a lower than normal temperature (as low as 96 deg) so it is good to take temperature and BP daily, so you know the norms. Then if a doctor says he has no fever so he has no infection, you can tell hem the norm for your husband is 96.2 and 98.6 is more than 2 degrees above that - so he does have a fever. Dehydration from not drinking enough. MSA patients tend to have more problems swallowing liquids than thicker substances. Therefore they do not drink (swallow) enough liguid and get dehydrated, this can upset the blood chemistry and even cause a UTI. Falls! If the balance fails, a wheelchair allows a lot of mobility here in the USA. A fall can be deadly. A broken hip can take years off you life and quality of life. A broken skull can also hurt your chances. You may find some other people in your general area. We have a fairly good group that keep in contact via phone, even though they do not attend meetings in the Metro Washington, DC area. Eighteen months ago, there were no local support groups here other than this list. Then I think Charmayne had the first one in Oregon, we now have many and more starting up all the time. Some are formal with meetings every month, others are informal and meet when they can. Our group has had the best attendance at parks, in good weather. Things that help MSA: Physical and speech therapy Lots of liquids Good nutrition Some symptoms can be helped with medicines Hope this helps, Bill and Charlotte Werre ----------------------------------------------------- Gail Southwick wrote: Quote Link to comment Share on other sites More sharing options...
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