Just to introduce myself!

Hi all, my name is Deb and I live in Australia.

I live with 2 daughters 25 and 23 and my grand daughter 19 months delightful! I also have a son who is nearly 21 but he does not live at home. I was diagnosed with MSA-C when I was 48 and I am now 52. I have not worked for nearly 4 years. I use a rollator to walk outside the home but nothing at home because I bounce off walls. I'm progressing slowly ( thankfully) but I don't go out very often because of my speech and incontinence. I have not (as yet) had hospitalisation or medical intervention. I'm scared for what the future holds but have a positive outlook. I have the book sent from the trust and I take it to all appointments. It is very rare, no-one knows about it, including doctors, which is because it's so rare.

That is me, I hope you are all well, as well as possible

Deb

2 Replies

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  • Hi Deb. It is interesting to read posts from people in other parts of the world and it helps to think that we are a worldwide community not just a few isolated individuals with this rubbish condition in our lives. I don't know whether the incidence is similar in Australia but it is so easy to meet all sorts of health professional who have never come across MSA.

    Geoff has type C as well, he has slowly progressed to having to use his wheelchair all the time but I am able to be his carer and his pusher so that is OK for us. It is sad that you don't feel able to get out much because of the speech and the bladder things, is there a continence service that you can access to get the best help?

    Grandchildren are great for keeping the spirits up and bringing some joy aren't they, although ours don't live with us for which I am thankful!! there are 4 of them and it is a bit crazy when they are here.

    Hope you are doing OK.

    Diane and Geoff

  • Hello Deb

    My Jackie has been diagnosed with MSA-C and so I can understand some of your concerns. We are lucky to have excellent support here in the U.K. Some months ago Jackie and I took the decision for her to use a wheelchair outside of the house - people say they are wheelchair 'bound' but we call it wheelchair 'liberated'. It has enabled us to travel extensively and to continue doing some of the things we used to do such as walking, hashing (following a sawdust trail), eating out and going to the cinema.

    We are lucky enough to have an all terrain wheelchair which can go just about anywhere I can push! At least I have go fitter pushing it!

    Many people have talked in this community of 'doing what you can, when you can' and I am sure there is help and support from this site should you need it. Good luck,

    Take care, Ian

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