Three Counties support group - Cakes,... - Multiple System A...

Multiple System Atrophy Trust

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Three Counties support group - Cakes, cuppa enjoyed by all along with advocacy and abdominal binders!

Yanno profile image
4 Replies

We had an excellent meeting yesterday at the Three Counties Support Group (Worcestershire/Herefordshire/Gloucestershire). There were 12 of us altogether and we discussed a range of topics including "accepting a wheelchair is liberating not restricting"; the Prospect & Genomes Projects; differences between MSA-C & -P and blood pressure...well the lack of it.... and abdominal binders. Thanks to the model for showing how they are fitted!

Jane Stein, the new MSAT Advocacy Officer was introduced. I am sure Jane will become an invaluable resource for those fighting for benefits such as PIP, CHC etc.

The next meting will be on 22nd January (4th Tuesday), and so put it into your next years diary now!

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Yanno profile image
Yanno
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Hellebelle profile image
Hellebelle

Hi Ian, thank you for the update. I am glad you had a good meeting. Just one question, I have never come across gastric binders. Please could you explain what they are used for? With many thanks. Helen

Yanno profile image
Yanno in reply to Hellebelle

Hello Helen; shame you missed the meeting, I hope your arm is much better soon - hopefully we will see you in January.

These abdominal binders, I understand, work really well in controlling low blood pressure often experienced in MSA. Jill Lyons explained that they work the same as compression leggings we have all seen used when flying except they are somewhat more effective and much easier to put on - hence the demonstration. Of course for those with MSA and a tendency to low blood pressure, they are worn all the time. One of the Group members wears one and commented how comfortable they are.

I'm sure Jill can give you more information if you need it.

All best,

Ian

Hellebelle profile image
Hellebelle in reply to Yanno

Thank you so much for the explanation. It's one of the symptoms that dad does not have at the moment, but it's always good to know for the future. I hope you have a lovely weekend.

Janeyl profile image
Janeyl

Abdominal binders have been the non- medical Go-To for orthostatic hypotension for the last few years. Chris tried several - none of which were comfortable for him to wear seated - they may be much more effective for those still ambulant.

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