Newly diagnosed with MSA

[PTS1]

Hi. Recently diagnosed with MSA, I’m 60 next week, looking back have had symptoms almost three years ago. I’m intrigued to hear if many make it past 9 years from diagnosis ? Being honest, bit afraid of what possibly lies ahead. Are there any groups or individuals in the Warsash / Fareham area in Hampshire?

[Kaye31]

So scary isn’t it. We are in same position. Symptoms for 3 years. Diagnosed December with Parkinson’s, July with MSA age 50 (just). I’d be interested to read the replies here to x

[PaulaG3 in reply to Kaye31]

I’m 52 and have been told MSA is likely. How is your husband doing ? Xx

[Kaye31 in reply to PaulaG3]

that’s so sad, I’m so sorry.

Well he’s had covid pneumonia just recently which has completely changed his baseline.

We aren’t married but have been together just over 2 years. When we met he had a slight finger twitch. Within 6 months a dragging leg and it goes on.

He’s struggling now with the future. Eating and drinking becoming more difficult. Carer 4 x per week. Rooster being used but now wheelchair is a more frequent sight. Speech becoming less recognisable.

Really rubbish.

But someone said on good days do fun things or just get out and that’s what we do. We’ve booked to go to New York in November so something to really look forward to!

And how are you coping?? We are just now thinking some antidepressants would be good. Tablet wise we are just in paracetamol as all Parkinson drugs have had a terrible effect.

[PaulaG3 in reply to Kaye31]

that’s very difficult early in your relationship but you have each other. Cherish that.

I’ve made the decision not to pursue anti-depressant as I tried one lot and they made me feel worse and the withdrawal was awful. I feel better without them.xx

[StephWx]

It seems to depend on the person. My Nan has had MSA for about 9 years now and only recently became bed bound, she has had 2 hospital trips this year for aspirational pneumonia so she has lost the ability to do anything for herself and now requires 24 hour care, but she does seem to be doing well at the moment.

[Yanno]

I agree with the earlier reply, it depends on the person. My best advice would be to live every day, be as positive as you can be and makes loads of memories. You can only change today not what happens in the future and so worrying about that just will not help.

Plan for the worst, enjoy the best.

Take care, Ian

[Annietutt]

I agree with Yano. My husband Tony often had to be persuaded to do things as it was often “.too much effort” . He had to learn the hard way to accept more help than he really wanted ( eg in getting ready to go out)in order to conserve his energy for more enjoyable things. Good luck and do as much as you can.

[Derkie54]

Hello,

Sorry we can't give you all the answers but it does vary from person to person, anyway welcome to the forum it's full of helpful people who are happy to share their journey and answer any questions if they can.

My wife was diagnosed about 5 years ago and before that it was thought to be PD.

Looking back at the balance issues and dizziness I think it had been coming on for 15/20 years.

She goes for fairly long periods between changes and I hope this is the case for you.

Keep smiling, adjust to your "new normal" if you have to and make the best of today, tomorrow and the next day.

Like others have said, we don't worry about the future too much because we just don't know what's it's going to be like.

Regards

Derek

[TK-67]

I'm sorry you've found your way here. It's important that there is no real pathway, everyone is so different, my mum diagnosed initially in 2012 with PD and changed to MSA in 2019. She's needed 24 hour care since then, we now just take every day as it comes as each day is so very different. My advice would be to get your support network in place - specialist consultant (our first one had limited MSA experience, having one with experience has made a huge difference), OT, physio, SALT, and a neuro nurse who can help to co-ordinate the help. I'm very practical and honest so it's worth thinking about things like lasting power of attorney...

Just take each day and deal with what comes, expect to be the 'expert' and make sure your loved ones are also clued up...sign up with the MSA Trust too - there is lots of information there and additional support on different things to consider.

And come back here, between us we can probably answer most questions or point you in the right direction.

[binnyrox]

Hi

I was diagnosed last year and I've had symptoms for perhaps 4 years.

I believe the symptoms progressed rapidly because I became sedentary over the Covid period.

If I could do it all over again, I would've persisted harder with my active lifestyle- keeping all my voluntary abilities intact as much as possible - movement, swallowing, coughing, speech, fine motor skills, stamina etc. So as not to lose it as quickly

I was recently hospitalized for aspiration pneumonia and was totally deconditioned for 9 days bedbound. Its 2 weeks since but with intensive therapy - I've managed to regain some of my function.

I feel the condition can be slowed - with active living.

There are medications for orthostatic hypotension, and other symptoms that may limit your living as before. You may wish to consider seeking medical advice to pursue your activities of daily living as normal as possible for as long as you can

For me, its really a case of "use it or lose it"

take care

PS -look out for the drug Verdiperstat - first evertreatment for MSA. The phase 3 trials end in September. If positive, you may want to explore trying to access it with your doctors

[Hidden]

My husband was also a sailor and a skier, diagnosed in 2013 at 58 and in a wheelchair for the last two years. In hindsight he had symptoms for many years before that and he became coeliac at 60. He worked hard to keep his strength up and we still do 30+ min daily exercise routines which help slow physical deterioration and reduce swelling in his feet (improved circulation). He does about 10 transfers to or from his chair every day which has prevented pressure sores and motivates exercising to maintain strength.- We've been given a bed we can raise and lower to make that transfer easier after a couple of falls. His power wheelchair can also raise and lower and he uses a stairlift to come upstairs for lunch and supper (installed several years ago and useful for us though Ive heard the opposite from others), where we keep a manual wheelchair that the council configured for him (very tall), We have fitted a bio-bidet and a floor-ceiling rail to help with the transfer to and from the loo (which is a bit low). We've just moved on to an internal catheter, which has made life much much easier so far (early days). His speech is slow and indistinct but perfectly understandable even though my hearing isn't great - though not to Alexa frustratingly. three monthly review with speech therapist for help with speaking and swallowing very worthwhile. He did record his voice early on but hasn't used it yet- he has slowed the response from his keyboard down to reduce error due to hand tremor. I have to break here but we found it helpful to anticipate what was developing and find ways to support the various transitions so we could keep as normal a life as possible. He now finds much laugh-out-loud humour which has eased the journey and has left some of his frustration with this awful condition behind. You can probably tell we are both engineers. Best wishes.

[Helenhooter in reply to Hidden]

Hiya, this post has given me hope as I hate giving up on anything and will try all sorts of alternatives. Keep up please 😘