dandg2025

[dandg2025]

Hi everyone,

So very sad to be here but I am glad this site is here.

My wife was diagnosed with MSA in Sept 2024 after initially being diagnosed 5 months earlier with Ataxia. She had been struggling with her balance and walking for about a year leading up to the initial diagnosis of Ataxia.

It is so hard to comprehend that Christmas 2023 she was able to hide her condition from all our family and friends but as Christmas 2024 passed her walking is now down to a shuffle.

It pains my heart to watch as my wifes independance slowly slips away.

There is nothing more I can say about this dreadful condition that hasn't already been said.

Yours sincerely,

D&G

[Yanno]

Hello D&G,

I'm so sorry you need to be here as well, however you are very welcome. As you say, what else can we say about the beast of MSA. My thoughts are with you and as always there are many in this forum who are only too pleased to help should you have any questions or even just need to have a rant about the Beast!

Take care, Ian

[dandg2025 in reply to Yanno]

Thank you Ian.

[Gill-C]

Your words will strike a chord with many. I had never thought about how hard it must be to watch. I guess I have been too busy living it!

I am unrecognisable - even to myself - when compared to who I was 2 years ago. Inside though I am still the same person. It’s just we have to work a bit harder to find me!

I’m not sure if that’s comforting in any way or just makes the whole thing worse! Thinking of you and your wife.

[dandg2025 in reply to Gill-C]

Thank you Gill, this thing is hard to talk about for both sides so there is comfort in your words knowing that my wife is still the same on the inside.

[FredaE in reply to dandg2025]

Sometimes people say things they dont mean and dont remember and then you can feel you are losing them and it adds to the heartbreak but at such times it is the disease which is speaking not your partner.

I remember a surreal discussion when he decided that he needed a better wife and we talked about how to divide up our possessions including our two devoted cats. Would it be kinder to separate them by taking one each or would we have to cut them in halfand take half each - we came to the conclusion that it was all too difficult and by next morning he had no recollection and was back to my loving husband again

Years later i can laugh at how it must have sounded deciding whether to saw the cats in half from side to side or lengthways but it was no joke at the time. Just an outburst of intolerable frustration which he had to be got through somehow

[Paul_and_Sue_Wood]

HiWe all are or have been on the same journey and the only positive I can give is that I have pictures of my Sue when she finally succumbed to using a wheelchair over 10 years ago.....

My big piece of advice is plan for the worst hope for the best and minimise risk to medical or physical injury.

Good luck

Paul and Sue

[dandg2025 in reply to Paul_and_Sue_Wood]

Thanks, sound advice.

[chester2107]

so sad you are here , but the group is very supportive and helpful xx

[Derkie54]

Hello,

Sorry to hear your wife is struggling, MSA is relentless and the journey seems to vary for each person. I've found this forum to be very supportive, it's full of friendly people happy to share their experiences, so if you do have any questions just ask.

My wife was diagnosed in 2016 she has no mobility at all now and needs help with every task. We do what we can and leave what we can't and from time to time adjust to our new normals as things change.

You're doing the best to support your wife I'm sure, you can't do anymore than that.

Take care

Derek

[dandg2025 in reply to Derkie54]

Thanks for the support Derek.