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[Lm12345]

Hi all,

My grandfather was diagnosed with MSA almost 3 years ago. At the age of 65. He has since became progressively worse, he is currently in hospital after having covid.

In the hospital, doctors are treating him with physio as covid did make him lose more power in his legs. We think they are thinking of a more ‘covid’ approach rather than MSA... a neurological condition. We haven’t seen him in 5 weeks and he is very distressed.

They are sending us all mixed messages about him fully rehabilitating, which we have already accepted wouldn’t happen a while back due to MSA. This is very upsetting on my family. This is in Ireland so there is not many people aware of MSA.

He unfortunately cannot go home as his carer for the last 3 years has been my grandmother (70 years old) and unfortunately she cannot continue being his carer. We are trying to put next steps in place but find the hospitals messages very confusing.

We want him to be comfortable and well looked after as unfortunately he has all of the extreme symptoms of MSA. If anyone could please give me some advice ? If they have experienced this before , it would be greatly appreciated.

Thanks

[Yanno]

Hello and sorry you need to be here. May I suggest that you go to the MSA Trust web site and look at the information data sheets there. You could print some information and see if the hospital will accept them to read. There's a specialist nurse who covers Ireland, Katie Rigg. I'm sure she would be able to give you some excellent advice and she is contactable through the MSA trust office.

I think it's such a common thing for healthcare professionals not to be aware of MSA and I think we all have to spend time educating our contacts on what the condition is all about.

Good luck and please have a look at the MSA Trust web site. Incidentally I see there's also a Dublin MSA Trust Support Group. If they are meeting on Zoom, I'm sure they will be able to give you support.

Take care, Ian

[Lm12345 in reply to Yanno]

Thank you Ian, I will definitely print off some information . I have an info pack from the MSA trust on the way so hopefully that brings some guidance.

Thank you

[chester2107]

hello , really good advice fromIan , msa trust good for advice , it’s so awful

anyone being in hospital at these times , and you want him to be looked , i hope you can get them to understand , good luck

sending hugs 🤗 elaine x

[Lm12345 in reply to chester2107]

Thank you Elaine xx

[Paul_and_Sue_Wood]

Sorry to hear of your problems and it is common for us all to become expert in MSA and then having to educate healthcare people about the condition.It sounds as if they are not sure what to do and that's why you get mixed messages. Demand a call with the senior consultant to find out what's going on as you feel they are not treating him correctly based on his condition.

Post hospital you will need carers in place so start looking and get social care involved.

Always ask for help, you will be grateful for it.

Good luck.

Paul

[Lm12345 in reply to Paul_and_Sue_Wood]

Thank you Paul !

[Diane831]

My advice is exactly the same as the other gang on here. Print out some of the MSA Information sheets from the MSA Trust website and send them in to your grandad so that he can show them to the physio and the nurses involved in his care. If you join the trust they will send a pack of information, but that will take a few days to arrive, there is a pack in there to fill in for if you need to go in hospital for any reason explaining his problems and needs. Speak/email to Katie Rigg And ask her advice, she might know the hospital or other staff members And she will definitely listen and give you her best advice. I found that if you have to speak to anyone, always say the whole name - Multiple Systems Atrophy - not the initials, so that no one thinks it is MS, and find a way to say to the professionals that they may not of heard of it because it is a rare condition and that is OK.

I hope that you can find the best care option going forward.

Diane

[Lm12345 in reply to Diane831]

Hi Diane, Thank you for your advice. I have an info pack on the way and will email Katie on Monday!

Thank you for your help,

Leah

[TK-67]

This is a common challenge with MSA, because it is so rare and presents so differently in people it's not often to find experts or even anyone who has an awareness. As others have suggested I would send over the info from the MSA Trust - does he have a specialist who could help and advise the team looking after him at the moment?