New to the group

[incon1982]

Hi - I just joined this group. I live in the US, but am always searching far and wide for information on MSA, as I am a caregiver to my husband who has been diagnosed with type C. I have joined a couple of other support groups based in the US and just found this one. I hope to be able to contribute, and I know I will be asking questions to over time. Thanks for being here!

[Yanno]

Hello and welcome from us all and ....sorry you need to be here.

Hopefully you will find many knowledgable and supportive people in this forum. One thing I would always recommend to anyone who has MSA is to look at the MSA Trust website here in the UK. It has a host of invaluable items about symptoms, support, research and many other things.

We all know everyone’s journey is slightly different and yet we also know there will be someone in this forum who has experienced each of the issues we face on a daily basis.

My wife, Jackie, has MSA-C and we try to always to be as positive as possible despite the beast of MSA constantly chasing us.

Take care, and welcome again, Ian

[FredaE]

can I echo what Yanno says. The london based MSA~ Trust is a totally relliable source of informatiom and help

there are plenty of people willing to take a lot of money off you for false cures. Compared with when my late husband was diagnosed over 15 years ago MSA although still rare is better known and understood but I am afraid there is no cure. yet. when eventually there is one we will all be rejoicing loudly. please do not be taken in by the idea of the little known cure or cause

This is not because no one is looking or "they" are too hide bound to consider new ideas. It is the nature of the disease

The clue is in the name MULTIPLE System Atrophy. Your brain is a complex of areas dealing with different functions and interacting with each esch other in complicated and surprising ways.MSA tends to affect thos parts enabling your body to do all those things you don't have to think about. Big things like controlling your temperature if you have an iinfection and smaller ones like the size of your pupils.

Everyone has a different selection appearing at different times which means that a proceedure like deep brain implant which needs to be in a very exact position for a very specific malfunction just is not possible.

You will find that you get to know your particular MSA and how to manage it. People here share their experience to help you do that

Do everything yyou can to make life easier and more enjoyable. and do it now. If you have something you have always wanted to do - do it now while you can. do't waait until the weather is nicer, create memories not regrets. if a walking aid would make things easier then use one, Its not giving in its creating opportunities

FredaE

[Yanno in reply to FredaE]

What such sensible advice Freda. These words should be given to everyone who is diagnosed with MSA.

The last paragraph has particular resonance with us. When Jackie was diagnosed we had a rant, despaired that this was not the retirement we planned, cried a little; and then made a pact to be positive, not to let the beast get us down and enjoy what time we had.

It gets more difficult but we enjoy every day. Great advice for everyone Freda.

Take care all, Ian

[FredaE in reply to Yanno]

Hi Yanno sorry to be so long replying - things are a bit complicated here at the moment. Nothing bad - just time consuming.

When Victor was diagnosed we felt that was a very bad time coming to terms with MSA and I created a cartoon of how life was and what we needed to do. Our grandson helped to put it into a suitable format for going online but I never got round to doing anything about it but it did help a number of people, I am very pleased if you think there was some good advice in my post. It makes me very angry to see people being preyed upon when they are at their most vulnerable

[Diane831]

Hi. You have had some great advice already from Yanno and Freda.

My husband had MSA C as well and we also tried to do what we could while we still could. Much depends on your husband’s emotional make up as to how he copes, and you will know how he ticks but I hope that you can Both see the funny side of the little things that happen And that you get a good little team of family or friends who can be with you along the journey.

Best wishes, Diane.

[FredaE]

All sorts of odd things..it was only after several visits to A & E after falls that I realised why he was getting such funny looks from the Triage nurses. He had very small pupils and they suspected Heroin abuse.so I was ready next time he got THAT look and explained that it was MSA.

Actually I didn't say MSA . Never do as it is always taken as MS or motor Neurone or one of the other things with initials. Full name everytime helps to save mistakes

You beat the MSA Beast by not letting it wreck your life and that means you whizz around in a wheelchair when walking gets difficult

instead of struggling out of a misplaced sense of shame.

To put it simply

You with your family enjoying the view off a cliff in a wheelchair - score; You 1 MSA 0.

You sitting in the car while the rest of the family grab a quick look at the view and come back to sit with you - Score; MSA 1 You 0

As yanno says .... Beat the Beast

FredaE

[Hellebelle]

Hi and welcome to this very supportive site. It's very comforting to be able to gain advice from people who really understand the condition. Your experience and thoughts will be gratefully received also.

Wishing everyone on this site lots of love and strength.