MSA Trust


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This topic contains 2 replies, has 2 voices, and was last updated by Avatar Sec55 6 months, 1 week ago. This post has been viewed 142 times

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    My husband has a diagnosis and we’re waiting for it to hit the system so his lev dopa can be upped. Not sure what to say it all feels a bit unreal but I guess that’s pretty much par for the course. In the last 18 months he’s gone from playing tennis to being unable to walk without support amongst other autonomic nasties. I’m 51 and he’s 63 and so We’ve decided to visit his family in NZ while he can and I’ve managed to negotiate a career break.. Suppose I’m wondering if we’re over-reacting and should be just getting on as usual. Sometimes I think we’re being sensible but sometimes it feels like panic.. Advise gratefully received and sorry that my first post is a bit of a downer…

    Diane Ball

    This is a really rubbish disease, you can’t know how things will progress for you as everyone is so different. The received wisdom is that you should make the most of every day and do the things you can whilst you can. You may find that things go slowly and you could still have made the trip later, but you don’t know that. You have your plans so make the most of it and enjoy everything and make amazing memories.We are 7 years from first symptoms – 6 from diagnosis – and Geoff is really disabled now and although we can get out in our Wheelchair Accessible Vehicle for short trips, the rest of the time he is sitting in his recliner chair listening to audiobooks or watching the TV.
    See this as an opportunity and enjoy!
    Best wishes to you both


    Hi Diane, Thank you, you’ve helped me crystalise my thoughts. MSA is really rotten as you say, and there’s no point hanging around and waiting for it to do whatever it’s going to do. We do need some new memories as otherwise I can see us getting stuck and focusing on what we could do rather than on what we can do, especially as Duncan has always been the sporty type. It is an opportunity, and I am lucky that my job is pretty flexible and that I have really understanding employers so NZ it is (and on the selfish bright side we will be doing more together as golf is off the menu now).
    Thanks again and best wishes to you both too,

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