Hi, my husband was diagnosed with MSA yesterday after being treated for Parkinson’s disease for 2 years.
I am so scared for him and wonder what the future may hold for us. I would welcome any advice or guidance from any other partners who are supporting someone with this condition.
Thank you so much x
HiWelcome and also sorry you are here.
MSA is scary as it causes so many changes to your lifestyle, but it affects everyone differently and at a different rate.
This forum is here to rant, shout, ask and help. Everyone is at a different stage, but you will find we are all here to both help and be helped.
First port of call is the MSA trust who are the leaders in knowledge about the condition, they have a huge amount of experience and help
The thing I would say to anyone new is, accept change, plan for the future, accept help and enjoy every moment you can.
Sue and I are 12 years into our journey and it still continues.
I agree with everything Paul has said. MSA Trust has to be your first place to go for advice. Get to know your local specialist nurse who will be a great help. Concentrate on what you CAN do not what you can’t. Make memories and be as positive as possible- your life has changed, not ended.
Take care, Ian
Hi, sorry your journey has brought you here. The best advice I can give you, is contact the MSA trust. They are their knowledgeable and supportive. You have also joined a lovely group, who are on various stages of their illness. You will have lots of advice from people who know what you need. Big hugs xx
Agree with Paul too.We are a little over year since 1st symptom and 8 months diagnosis. It is super scary.
We have moved area so have had to start again with a new medical team and MSA Tryst nurses have been wonderful.
Trust your gut! If you think something really isn’t right then push for help. Infections are hidden so really believe in yourself!
We have purchased a scooter as walking is getting very tough, it has changed our lives! Jon is 50 so these changes are super tough on him.
It will be ok. I believe in positivity it’s the only way, and I continually push Jon so he doesn’t end up a couch potato!
Hi there. I was diagnosèd just ovèŕ 2 yèars ago. My husband is chairbound and dèaf and I was HIS sole carer so this has hit us rèally hard. Additionally he doesn't want to accept what iß likely to happen (& what hàs alŕèady happened) to me. With no family nearby (Cumbria) I felt completeĺy cast adrìft untiĺ I found this site. Folk on here have been marvellous- listeñing when all I wanted wsàs to scream and yell about the injustices of life be that difficulties getting a taxi to getting a real person to answer the bloody phonè when i call the GP.When I've got some ñew symptom -
òr is it simply a sore toe from when the dog landed oñ it - a pòst on here will get some helpful advice.
Relàx, you're ñot alòne and the advice given to make the most of each day is the best. If youvè not got carers then I'd seriously look at that, even if ònly for getting up, showering anď putting to bed at nìght.
Good lùck. Plenty of people oñ heŕe wil be able and happy to help
Suexx
Hi, welcome to this group. They are wonderful. Everything they've said I reiterate. I am still waiting for a diagnosis after nearly four years! Do what you can but devise ways to do it safely. I now suck the toothpaste into my mouth because I cannot squeeze it onto my brush. I often use a small plastic bag over my foot to put my trousers on (much quicker and saves all sorts of entanglements. I may soon have to adopt this method for sleeves and coats). If I think of other tips I will add them. I'm sure I use other tips but as they are daily they've become routine and I've forgotten them! Live and enjoy everyday xxx
Hello,
My wife was PD then MSA in2016, she seems to be on a slow decline so we have managed the changes.
All the other posts give good advice and the only thing I can add is adjust when you can to any "new normals" and enjoy what you can, when you can.
No one asked for MSA so we (unfortunately) have to just get on with it, life is a bit harder for the sufferer and the carer but you just make the most of it.
L has no mobility at all, I'm her sole carer and we get no physical help from anyone but we manage and so will you.
I've had a lot of support from the forum and the MSA trust is also full of information and helpful people.
Take care and keep smiling when you can 
Derek
A few points to add to all the good advice given here
You are at the most diffcult stage. Yes really. Things will get physically worse but you will get better at coping.
What ever you want to do do it NOW. Dont wait for the ideal time. Make memories not regrets
Never takes no for an answer. As time goes by you will find that YOU are the expert. Learn how to insist nicely
Have help early. Whether carers or walking aids regard them all as your allies in giving this rotten disese a run for its money. If you leave it to the last minute you will create missed opportunites.
Don't waste money on expensive "cures" they dont exist yet. When they do everyone will know about them. Spend your money on anything which makes your life better or more fun or more comfortable..
I read a post the other day that said the writer wished that they had spent more time enjoying the person’s company than worrying about the disease. Do find out about the disease, but also realise that everyone’s variety of symptoms is slightly different and not everything you read will be part of your husband’s journey. Focus on getting the most out of the life you have, not the things that you had hoped to do. Try and find things to smile about and be ready to accept different ways of doing the things that you want to do. Diane
.Thank you all so much for your words of comfort and advice. Xx
Ideas for a birthday present 
Thank you for your kind advice
A retirement we couldn’t have imagined. 
PEG/RIG feeding tubes
