...msa-SAD

[Jiempies]

...my wife of 43 years...msa...declining daily......depressed...crying...disappointed...severe pain...dubble vision...bad taste...can't walk...no answer...sadSADsad...

[Diane831]

So sorry that you are both struggling so much. There is nothing kind about this horrible disease.

[Jiempies in reply to Diane831]

💙

[Jiempies in reply to Diane831]

... thanks Diane

[Bax21]

Hello Jiempies

I am so sorry to hear about your wife. My husband was diagnosed in October 2021 with MSA-P so my heart goes out to you. Like you we too are very sad but we try to make the most out of every day and look for the positives in any little thing. We laugh and we sometimes cry but we try not to let it stop us from doing things. It isn't easy - it is incredibly difficult - but what is the alternative. We have to keep going and make the most of our time together. We take one day at a time and make sure we put in place anything and everything that will make my husband's life more independent. Take all the help and support you can get and stay strong. Everyone on this Forum feels your pain and wishes you and your wife all the very best with this cruel disease. Take care and look after yourself.

[Jiempies in reply to Bax21]

💙

[Jiempies in reply to Bax21]

...thanks Bax21

[Hidden]

Foie tog man🧡, ja it's shit. And there's no point dressing it up any different. If it's any comfort, your words show the other things that she is too:.. ..cherished.. precious...real...held up by your love... I hope there's people there to support you too, because witnessing the changes can be hard.🧡

[Jiempies in reply to Hidden]

...thanks KayR11

[chester2107]

so sorry , my dad felt like that , did my best to get him out etc , such a cruel disease sending you both hugs , my mum and dad were married 62 years xxx

[Jiempies in reply to chester2107]

...thanks chester...

[Musicmadgran]

So sorry to hear that you’ve both had this news. I have MSA so know how utterly devastating the news is. Firstly, let me say that it is very important not to try to deal with any aspect of the disease or associated emotions on your own. We are all too used to keeping things private but I don’t believe this disease is survivable con our own. Accept all help. I’m in Scotland so all my advice related to the Scottish context. Secondly, you need to start building your team of health supporters. I will just list the people I have relied on for advice. A social worker for welfare assessment and putting care package in place, Parkinson’s nurses for medical advice and support, occupational therapist to advise on housing adaptions and funding, hospice for counselling and complementary therapy and gp arranged NHS counselling which I am currently finishing. I advise you to be open to the emotional rollercoaster that you will embark on. Be there for each other. Be honest about the hellish times but don’t forget you have each other and that is your greatest strength. Any further advice, just ask. Good luck and God bless x