hello

[fixedit]

I have MSA. I was diagnosed earlier this month. I am currrently working out things to do to get support in place for me and my family. I think it’s early days - not very advanced yet. I am an engineer and musician, and there is so much I want to do.

i occasionally paint and write poems. I love taking photographs of the places around where I live. I have a wonderful wife, 2 young adult children, and 2 lovely cocker spaniels.

Hello MSA people. I am going to be here for a while.

[Paul_and_Sue_Wood]

Hello

Both pleased and upset you are here.

You will find this forum helpful and supportive ask any question you may have no matter how dumb you think it is and you will get answers from all those who are on the same journey.

Do as much as you can for as long as you can whilst limiting risk as we find a trauma event usually causes the condition to get worse.

Paul and Sue

[fixedit in reply to Paul_and_Sue_Wood]

Thank you Paul and Sue. Diagnosis confirmed what I was already thinking, but there is so much to do now I have it. Most of my questions seem to be ‘how long until …’ but I don’t think there are answers to these. I have changed one kind of unknowing for another.

Tim.

[Paul_and_Sue_Wood in reply to fixedit]

Tim

Its the big question everyone asks is "how long" and guess what no one knows.

Everyone's symptoms and rates vary and no one knows why.

Sue and I are now in our 9th year since diagnosis and she became a wheelchair user in 2010, so a long time and we are still here.

Good luck, keep challenging and adapt.

Paul

[fixedit in reply to Paul_and_Sue_Wood]

Thanks. I’m an engineer who has worked in disability for over 20 years. I can adapt emotions haven’t hit me yet. They will at some point I guess.

[Gill-C]

Good to hear from you and thank you for giving us such a vivid picture of who you are. Do remind yourself that, whatever happens, when it happens, you are still that person inside.

Everyone - me included - holds onto their date of MSA diagnosis, but of course it is arbitrary as we all had symptoms long before that. Mine was 2 years ago and the disease progresses slowly.

I am gradually having to cut down on some things (like work) to concentrate on finding ways of doing what matters (seeing friends and family - I too have two adult children - holidays with my partner, future proofing the house, reading, writing poetry, exercise etc.)

A few things I have learned from health professionals;

* Not everyone gets everything and everything doesn’t happen all at once

*These are the good years, don’t waste them

*Avoid falls etc - hospitalisation’s sets you back an almost irrevocable amount

From me:

* There’s usually a way round your latest limitation - you just haven’t found it yet

Good luck! We are both here for the long haul!

Gill

[fixedit in reply to Gill-C]

Thank you Gill. I am glad to have found this friendly community. Are there many trolls here?

Tim

[Gill-C]

not met any yet and I think there are moderators looking at the site - probably those who have been on here for many years would know better than me.

I have found everyone to be kind, frank and super supportive

[MalcolmReeder]

Hi there

I am currently being diagnosed. My consultant has said MSA but we are not sure what type it is yet.

Really good to hear from you and from Paul and Sue.

Regards

Malcolm

[Worbs2]

Hello Fixedit, Sorry to hear about your diagnosis. P or C?

I was diagnosed in 06/2022 & my world was rocked. It REMBD and swaying (balance).

Now gait, bladder & speech problems added. MSA-C, I have

Not a lot of physicians know about MSA. Best advice is find yourself a great support system and keep moving. Also sign-up for some forums like #MissionMSA or Defeat MSA

Contact me ìf you have questions

Ron

[fixedit in reply to Worbs2]

Hi Ron,

Mostly P but some C as well. It’s a mix of blood pressure, walking wobbliness and freezing, continence and retention, speech (a little slurring), swallowing (a very little), and dexterity (a little), and slowness everywhere. L-dopa is helping

Tim.

[Derkie54]

Hello,

Pleased to see you've found your way here it's a very friendly forum with plenty of people willing to help and share their experiences.

Not so pleased to hear you have MSA though but as we found that's life and you just have to get on with it.

My wife has had it for many years and has declined slowly which has given us time to adapt, but as you'll read here people seem to have different journeys.

Take care

Derek

[esj20]

hi there,

Glad you found your way here but on the other hand it’s a complete barsteward you are here.

My advice, which was given to me early on is ‘ plan ahead.’ Never put off by thinking “I’ll cross that bridge when I come to it “ as before I knew it, I was there. MSA Trust are invaluable and their advice and help is second to none.

I did start my journey thinking “ I’m not ready for this yet” and I was caught out.

This group also is amazing for care givers as well as those like us who were unfortunate enough to inherit MSA.

Stay safe and healthy on your journey along with this bloody disease

Yours

Alec