Hello All: Hi everyone, My names kim... - Multiple System A...

Multiple System Atrophy Trust

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Hello All

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Hi everyone,

My names kim and im from bedfordshire, my mum has recently been diagnosed with MSA, i came across this forum while doing a few searches on the net. She has been showing signs for around a year now but they have been progressively getting worse., at first they thought it was parkingsons but with no reaponse from medication they have now said she has MSA, at the moment she is very much in denial and very emotional.

11 Replies
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Kim I am very sorry to hear about your Mum. She must be pretty shocked? Help her to come to terms with this if you can. Let her know she is not alone. Although there is no cure yet there is help from others going through the same thing. There is also medication to help with symptoms. People on here are very helpful. Have you been in contact with MSA Trustees? If not it would be a good starting point. They are very helpful and will send information to you both. There are also get togethers in various parts of the country.

Take care.

Marie

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Hidden in reply to Marie_14

Thankyou for your reply, i shall get in touch with them.

Hello Kim, Welcome to this community even though I know it would be better if you didn't need to be here. Marie has already suggested that you get in touch with the MSA Trust and their web site has lots of interesting information. There will be an MSA Trust specialist nurse covering your area who will be a great support to you when you need it. Also this Group has grown over recent months and we now have a large number of people with a whole variety of experiences and their advice is available...please just ask!

When Jackie was first diagnosed, it was a shock to us as well, as it is to everyone. We however took a conscious decision that despite the difficult times ahead, Jax would do what she could, whenever she could. We were, and still are, determined that this beast of MSA will not get us down. I am sure you will encourage your mum to realise that despite the diagnosis and despite the difficult journey ahead; she can have some fun on the way.

Finally one other snippet of advice that you will find elsewhere on posts to this community - You will find that few medical professionals have come across someone with MSA. They frequently confuse it with other neurological conditions or MS. The MSA Trust will send your mum a file within which to store details of appointments, medication etc. It's really worth using this and taking it to every appointment. We found at times that we had to be 'robust' in making well meaning but misunderstanding professional, get on the right track with Jackie's condition.

Good luck, and shout if you need help...we all have at times. Take care, Ian

Hi Kimmi and welcome. I have recently joined this very caring and supportive group being a carer for my brother. I have already learned so much from the lovely people on here. We have an excellent Neuro team here in West Sussex and an active MSA group. If you have one near i would recommend going along to a meeting either with or without your mum. Ian as always is full of good advise especially about enjoying time together.

I am sure we will all be with you on your journey.

Lyn

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Hidden in reply to Lynnieherbert

The consultant mum see’s at the hospital is lovely, very understanding and wanting to help. Ive looked into a group but sadly the nearest one we cannot get to. Its early days and i know once she has got her head around it all things will settle a little, her walking is very unsteady even with a stick so im currently looking into a small electric scooter we can load into my partners car to take her out and about.

Lynnieherbert
Lynnieherbert in reply to Hidden

Get her OT to look at that for you before you buy. They can help you with all sorts of things to make life easier and advise you on where and what to buy at possibly a reduced cost. I

Lyn

Hi Kim. Glad that you found your way to this forum, although I am sorry that your Mum has MSA!! getting to know as much as you can will be helpful as you help her through these very difficult days. I do agree with Lyn that getting some advice about what equipment to buy and what could be provided for her would be helpful. A physio and OT would be your best advisors for all the equipment however sometimes buying things can work out better as you can choose functions that work for you. Be wary of sales people, although the better companies can offer some helpful advice.

All the best to you and your Mum and I hope you get lots of trips out together!

Diane

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Thankyou to you all for the reply’s, we have today had an appointment for the parkingsons nurse to come and visit us at home on the 18th May so thats something

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Does anyone have a link to where i can register with the MSA trust

Yanno
Yanno in reply to Hidden

Hello Kim, Here is a link to their contact page. Membership is free and you can either email or telephone. msatrust.org.uk/support-for...

Hi Kim, welcome! You have already received some excellent advice and I love your positive attitude to taking your mum out. My dad has MSA and we have the support of the wonderful team of their local hospice. The doctor and OT have been excellent. We are so thankful for their thoughtful and knowledgeable advice. I hope that you manage to get the help of either a neuro team/hospice or similar as we have found this invaluable. We started off with the parkinsons nurse who put us in touch with the hospice team.

There will be challenging times ahead but as Ian said, it is important to make the most of each day and take every opportunity to enjoy what you can. Time spent with your mum will take on new meaning and you will treasure it. Although it will be a bit of a logistical nightmare I am planning on taking mum and dad out with the help of my brother in a motor home this week. We will visit a local reservoir, watch nature and hopefully end up eating fish and chips, which is what dad has requested. It is the little things that matter.

Sending lots of love to you and your family.

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