what things do you still do?

[Groovyag]

It will be useful to know what things you still do and when you were diagnosed?

I appreciate we are all different.

I do not know how regressive my health is ?

This results in unnecessary panic attacks.

Thanks

Groovyag

[Monkeyfeet1]

I mostly watch tv and read.

[Anovis in reply to Monkeyfeet1]

Three years plus from diagnosis my husband also spends all of his time, when he's not sleeping, watching tv and reading. He has limited mobility so is homebound.

[Groovyag in reply to Anovis]

THANK YOU

[Groovyag in reply to Monkeyfeet1]

THANK YOU

[Paul_and_Sue_Wood]

Sue is in her 9th year since diagnosis.Recently she had to stop doing diamante art work a bit like paint by numbers. She has also done needle work and other art works.

She gets out to the local hospice and we visit family and friends as much as we can. We take our dog out for a walk around a local estate or country park.

She has no mobility and needs help to do anything but we do all we can when we can. She gets very tired and watches a lot of TV now and moans at me... Occasionally..

We adapt

Paul and Sue

[Gill-C in reply to Paul_and_Sue_Wood]

Can I cheekily butt into this thread to ask about communication?! If it’s not too rude to ask, how badly is Sue’s speech affected and how do you manage?

Losing understandable speech is one of my greatest fears. So far so good, but I have only been diagnosed two years ago. It’s sometimes hard to remember the mantra that not everything happens to everybody and it doesn’t happen all at once.

Thanks so much for all the words of wisdom that you both provide on this forum. I value it greatly

[Groovyag in reply to Paul_and_Sue_Wood]

THANK YOU

[CloudEA1]

Were you diagnosed after covid? Anxiety feelings are very common as MSA is a form of dysautonomia

[Groovyag in reply to CloudEA1]

THANK YOU

[Purplestar2]

Do you think it’s linked to Covid?

[CloudEA1 in reply to Purplestar2]

There is growing scientific evidence and Parkinsons UK are seeing a rise in parkinsons-like symptoms after covid. These symptoms include a lot of autonomic systems suggesting something akin to MSA even if not that exactly (too early to know). Not nearly enough autonomic testing in the UK (or globally).

[Groovyag in reply to Purplestar2]

I AM 55, VERY YOUNG. I DO KNOW I SUFFERED ALOT OF STRESS , ONE THING AFTER THE OTHER

[Columbia_Rocky]

Hi Groovyag, As you say, everyone’s journey is different, and MSA affects everyone differently. I dont know what stage you are at, but you should concentrate on what you can still do, and depending on how much help you have available, how you can do the things you want to do, for as long as possible. Don’t put off doing anything as you don’t know how long you will be able to do certain things, and if it means you can do it more often then all the better. My husband was diagnosed in 2018 and is now fully wheelchair bound, but there are plenty of mobility aids available, which help to transfer into the wheelchair, and we still go out quite a bit, and generally go on cruises for holidays, although places like Centre Parcs cater quite well for disabilities. There are lots of Facebook pages that discuss accessible holidays and days out to give you ideas of what to do. We have a WAV so that gives us a lot more freedom and he has a suprapubic catheter which takes the stress of finding accessible toilets when out. We are currently awaiting a PEG fitting. There are lots of places that are accessible, but you do need to check before you go. Also if you haven’t already done it, you should get an OT to visit to discuss what equipment is available to help you do the things you want to do. Good luck with your journey with this horrid condition. Please make the best of every day.

[Gill-C in reply to Columbia_Rocky]

This is such good advice. Thank you so much for taking the time to share the lessons that you and your husband have learned over six years of experience.

Might, I ask the same question that I asked Paul and Sue? How badly is your husband’s speech affected and how do you manage? Communication with our partners is so important and I dread losing it or simply giving up because is so tiring. Many thanks.

[Columbia_Rocky in reply to Gill-C]

His speech is getting quieter and more slurred but generally understandable. But he has banked his voice, which I would suggest you do too. You should have a speech and language therapist assigned to you and they will be able help with different strategies.

[Gill-C in reply to Columbia_Rocky]

Thank you so much for taking the time to reply. I have already voice banked and I’m grateful the option exists, but it looks like it would require quite some dexterity to use it conversationally.

[Columbia_Rocky in reply to Gill-C]

Yes, I know typing can be difficult, but there are a couple of other options which the SLT and/or environmental control services may be able to help you with. Paul had a switch which is a button he can click on the appropriate letter, but it is also quite slow. Possibly an eye movement reader might work for you. Or a voice amplifier if your voice is quiet. I would think the SLT is the best person to advise you. I hope you get something sorted.

[Gill-C in reply to Columbia_Rocky]

Oh these are really helpful tips. Thanks. I’m squirrelling them all away for the future.

So far, I’m not too bad voice wise and an intensive course which was SLT provided in Islington (the Lee Silverman Voice Technique) was very good for voice strength and endurance. Like everything else only as good as the practice you put in tho!

[Groovyag in reply to Columbia_Rocky]

THANK YOU

[Derkie54]

Hello,

That's a good question and as others have said most MSA journeys are are different.

In our case L was diagnosed in 2016 although the signs were there many years before.

She has had a slow and steady decline and that has given us time to adjust.

Fast forward and now she cannot do anything, spends a lot of time in bed where she is fed, cleaned up and changed every few hours.

She is confined to one room but we use a hoist to transfer into a wheelchair and I try to take her out most days.

She is fairly comfortable and doesn't take Any MSA medication .

L seems to be in her own world, going for hours without speaking but that might be down to the 2 strokes she had recently.

We seem to watch the world go bye rather than being part of it and just accept things as they are now, adjusting to new normals when we have to.

Lots of helpful people here willing to share their experiences.

Take care.

Derek

[Groovyag in reply to Derkie54]

THANK YOU

[Ovx823k]

I believe my wife’s started with night tremors shouting out loud screaming and lashing out hitting me( not her fault).And then she fainted crossing the road and hitting her head on the tarmac she was on her own when this happened.This happened again about 3 months later I was with he this time again she hit her head on the tarmac. As she was just behind me as we were crossing the road I did not see her fall. So I believe this was the start of MSA and then the rest of the MSA condition stared to creep in.Most doctors think it’s Parkinson’s even a few specialist said she had Parkinson’s all of the doctors we had seen had never knew about MSA.It was only when we had seen a specialist in The National Hospital for Neurology and Neurosurgery Queens Square London (NHNN) who wanted to keep my wife in for 3 days for tests. After the tests she was diagnosed with MSA.This was back in 2018 and then the rest of the conditions associated with MSA slowly crept over the next few years.

[Groovyag in reply to Ovx823k]

THANK YOU

[iPad4]

Hello, I was initially diagnosed with PD in 2020 then diagnosed last year with MSA. My overall movement has slowed down and have lost a lot of strength. I have a particularly tight neck. My speech has become much lower. I get very light headed when standing up from a lot position. But thankfully I’m still mobile and still able to work. Only 2 weeks ago I was the head of security for 4 concerts by the band, ‘Coldplay’ with 82,000 crowd at each concert. My message is keep doing as much as you can for as long as you can. Don’t give in to it. God bless. 🙏🏼🙏🏼🙏🏼

Michael

[Groovyag in reply to iPad4]

THANK YOU