Living with MSA-C

[Andrashko]

I am reaching out to anyone that can help my husband learn and deal with his MSA-C. He was diagnosed in 2019, but had symptoms for atleast 2 years prior. His balance, speech, bowels , etc have really declined just in the last few months more rapidly than before. Is there any chat rooms or groups that he is able to join to speak to others as this progresses?

[Yanno]

Hello and welcome to this forum albeit as always it's sad you need to be here.

Of course this forum is one of the places where those with MSA and their carers can chat, share experiences and get some valuable advice. He will find it's very friendly and welcoming and everyone has some experience of MSA in their lives.

You don't say if you live in the UK or not however you will find the MSA trust has a host of information on their web site and if you live in the UK there will be a local support group that your husband can visit - all virtually at the moment. We for instance have a very vibrant group that covers Oxford, Worcestershire, Herefordshire and Gloucestershire - we meet monthly and talk about just about anything as well as having guest speakers.

I hope your husband finds what he's looking for, hopefully we will see him posting on here very shortly.

Take care, Ian

[Diane831]

Hi. This is a great place to start. As Yanno has said where you live will make a difference to what support you will find. There are several Facebook groups that people chat on if you are Facebook users.

‘MSA UK and Ireland’ is one or ‘Multiple System Atrophy ( MSA)’ is a more American based Page

Many of us On this forum have encountered the problems that your husband is struggling with at the moment and can offer support for him and for you. You are not alone!

Diane

[Ssandyy]

Hiya my partner is in the exact same place as yours. He was diagnosed two yrs ago on his third and his speech/ bladder/ balance walking 🚶🏻‍♀️ all not working.

He has been on YouTube a lot he’s not on Facebook but he gets a lot from YouTube.. But there is groups on Facebook for people who have msa only so they can speak to each other and there’s groups for partners and Carers only. This group here is always great for someone answering any questions. Sending you Blessings . X

[Andrashko]

Thank you for the information. Do you know what the group on Facebook is called? I would love to be able to join that group

[Andrashko]

oh by the way we live in the Unites States. Colorado