Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 My name is Twila and my husband and I live in Nova Scotia, Canada. My husband (Bill) was diagnosed in November of 200l with MSA. Is is Olivopontocerebellar Atrophy. He is not coping very well and I can't seem to find any anyswers to help him. He is convinced is going to die soon and that makes things very difficult. We are planning a trip to the Mayo Clinic in Rochester, Minnesota next month and he is convinced he will die before he gets there. I don't really want to make the trip up his parents are insisting in it. please if anyone has any suggestions feel free to respond. I also have anyother Email address " btyoung@... " if you want to respond to that one. Thanks for any help. Twila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 hi. tell ur husband not to give up. I am 43 now and a pretty determined lady. It gets rough many times, but just balance ur days with rest and movements. oh! don't forget fluids and throw in a smile. Believe or not the smiles help. nancy m. from cleveland barnyardchick2 wrote: > > My name is Twila and my husband and I live in Nova Scotia, Canada. > > My husband (Bill) was diagnosed in November of 200l with MSA. > Is is Olivopontocerebellar Atrophy. > > He is not coping very well and I can't seem to find any anyswers > to help him. He is convinced is going to die soon and that makes > things very difficult. > > We are planning a trip to the Mayo Clinic in Rochester, Minnesota > next month and he is convinced he will die before he gets there. > > I don't really want to make the trip up his parents are insisting > in it. > > please if anyone has any suggestions feel free to respond. > > I also have anyother Email address " btyoung@... " if > you want to respond to that one. > > Thanks for any help. > > Twila > > 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...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Hi, Good luck with your trip to Mayo. Who are you seeing there? I'll be going in the fall, as well. I know it is all so scary and all so difficult- but he has you who will help him in everyway possible. Fluids an dsmiles do make you feel stronger - it's true. Plus, you make it through a lot more than you think you will. Horrible days do become not so hot days and those days become alright days - and that means you are living, although you are suffering. Keeping fluids in check makes all of the difference. to my friends, who wonder what it is like, I say it is like the worst hangover in your life- but once youg et fluids in you and sleep it off etc, you feel a lot stronger. He is lucky to have you - and you can help him with this even when he does not think to ask for a drink - just keep them coming. I also find when I cna, moving around does help, but not when it is dangerously low. I use a crutch when I am too weak to stand still very long or I am swaying or the world is falling out from under me. cheers! Waverley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Hi Twila, I can really feel your frustration and I so wish you and Bill didn't have to go through this. I'm sensing that his family are insisting you take him to Mayo because they are hoping there will be some miraculous discovery made there. This is setting everyone up for a huge disappointment. It doesn't sound like he wants to go and you already said you didn't want to make the journey. Halifax, NS to Rochester, MN is a pretty long trip. I expect you'd have to change planes at least once and maybe even twice as there is nothing direct. Will you be able to manage this? Is he using a wheelchair now? I just was rereading some of your past notes to me. You said: " Bill is also hypoimmunoglobamenic, which is a deficiency in his white blood cell which does not produce enough antibodies to fight infections, so he is no antibiotics a lot. " This really is a concern because infections are very common in people with MSA and are usually what is going on when you see a sudden decline in their health. You'll need to be on guard and watch for signs of infection and get him to the ER if necessary. Did you know that often MSA patients have a lower than normal body temperature and don't register a fever like you or I would? You'll need to know what is normal for him so you can detect when his temperature rises above his normal range. In your past notes you also mentioned that he was getting some alternative treatments from a woman who's daughter had Multiple Sclerois and the daughter showed great improvements. Multiple Sclerosis and MSA are two very different beasts. Multiple Sclerosis is known for it's remissions. It is an autoimmune disorder and can be treated to some degree. Am I correct that these treatments didn't really do much for Bill? He is probably feeling very disappointed by that as well if he had high hopes these things would help him. You know I live about 30 minutes drive from you and my husband Dave and I would be happy to stop by and see you. I'm worried though that talking to us might not cheer him up since Dave's mother passed away from this at age 55. She had a very cheerful personality and joked and laughed up until the day she died. I think she tried to live life to the fullest and get joy from every moment she could. Do you and Bill have children, grand children, pets? Is there something in his life that gives him some joyful moments? You need to try to focus in on these sorts of things. Love, Pam Help > My name is Twila and my husband and I live in Nova Scotia, Canada. > > My husband (Bill) was diagnosed in November of 200l with MSA. > Is is Olivopontocerebellar Atrophy. > > He is not coping very well and I can't seem to find any anyswers > to help him. He is convinced is going to die soon and that makes > things very difficult. > > We are planning a trip to the Mayo Clinic in Rochester, Minnesota > next month and he is convinced he will die before he gets there. > > I don't really want to make the trip up his parents are insisting > in it. > > please if anyone has any suggestions feel free to respond. > > I also have anyother Email address " btyoung@... " if > you want to respond to that one. > > Thanks for any help. > > Twila Quote Link to comment Share on other sites More sharing options...
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