This sounds encouraging: businesswire... - Multiple System A...
This sounds encouraging
Hello. I think this is your first post on this community; I have however, read your post on the PSP site of 3 months ago. Whilst I follow the PSP community, I have to say I missed your post when you first put it up. How are things progressing with your PSP/MSA diagnosis? I have to agree with the person who responded saying whatever the diagnosis the support you need is similar.
Thank you for passing on this information about this research - it sounds very promising. As you are aware we have an excellent non-profit Trust here in the UK; MSA Trust who are very supportive; no doubt they will be aware of this research.
Welcome to the MSA community albeit as I always say, it's sad you need to be here.
Take care, Ian
Thank you, Ian, for your kind words. My husband is progressing down the path of MSA, but (for the most part) continues to have a good attitude about the future. Last night was a little sad, as he shared he wouldn’t be around much longer. I came back with, “ you have a strong heart, lungs, etc, and with the right attitude, we will continue to tackle the balance and other issues for years to come. “ That was unusual for him, as he never complains, and always gives his best. He falls often, but so far, no broken bones. He struggles with all daily living tasks, bathing, eating, etc, but we manage. He uses a walker, and so far we haven’t required extra help, although his pcp has asked if we are ready for home health care. We are building a handicap accessible house, which will be open and better for walker/wheelchair movement. Just taking it one day at a time.
Where are you on this journey?
If you look at some of the other posts I have made, I am so convinced being positive is all important; if nothing else it gives you a better class of misery!
One of the first things to go was Jackie's balance. The downside of that was we were very active, walking, skiing etc etc. All that has stopped and Jax uses a wheelchair all the time out of the house and can only move anywhere inside with my help. whilst this has been disappointing, it has meant that we haven't had the falls that set so many others back.
We have added a wet room to our main house and a stair lift in our cottage in Devon (in a quiet rural village). Jax needs help with everything and her voice is badly affected but (touch wood) manages to eat okay. We still do loads of things, travelling abroad and in UK as frequently as we can.
All each of can do is take one day at a time; make the best of every day and enjoy the time together. We have become very selfish in a positive way - why worry about things we can't change, why bother about doing things we 'aught to do'...we just do what we can when we can and enjoy it!
Take care, Ian
