Worcestershire Support Group - A late... - Multiple System A...

Multiple System Atrophy Trust

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Worcestershire Support Group - A late write up!

Yanno profile image
8 Replies

Hello everyone

We held a Worcestershire (and surrounding area) support group meeting a couple of weeks ago and I promised to do a quick post about it. Well....sorry it's been a bit delayed...it's been one of those fortnights that we all get, too much to do in too little time!

The meeting was well attended with 11of us in total. We started the meeting with general introductions and a free ranging discussion on matters such as medication, the differences between MSA-P & MSA-C and a discussion on benefits - including my particular beef that carer's allowance ceases once one draws a pension!!

Jill Lyons, specialist nurse from the MSA Trust, gave an update on Trust matters including showing us the newly produced MSA Trust Hospital Information Leaflet and Carers Guide.

Sarah from St Richard's Hospice (where we were meeting) held an interesting session where we all sampled seated Tai Chi - an excellent way to keep things moving and to help with fitness.

I'm sure I've forgotten other things we discussed but no doubt others will chip in with a reply to remind us.

We agreed to hold the next meeting at St Richard's, Worcester, after the holiday season. Paul has arranged this for Thursday 28th at 11am - everyone welcome from Worcestershire..surrounding areas.... and from far off lands!

Thanks Paul for coordinating this group, and of course the MSA Trust for their support.

Take care, Ian

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Yanno
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8 Replies
Rankin63 profile image
Rankin63

Hi Ian,

You meeting sounded interesting especially the seated Tai Chi,My physio says it would be a good idea to sign up for an exercise classes as her class is finished. I hope you got something from the meeting . It was good to hear about it. Mina .

in reply to Rankin63

Hi, there are some tai chi for wheelchair users on YouTube. Good for using at home or small groups

Yanno profile image
Yanno in reply to

Thanks for this, I will look on YouTube. Your comment was well timed as our local group has just stopped.

Take care, Ian

Alisonleicssupport profile image
Alisonleicssupport in reply to Yanno

Where is your group normally based Ian?

Yanno profile image
Yanno in reply to Alisonleicssupport

Hello Alison

We usually meet nowadays at St Richards on the outskirts of Worcester. We are considering meeting in the evening for our next meeting - what time of day works better for your group?

Alisonleicssupport profile image
Alisonleicssupport in reply to Yanno

We don’t hold them as frequently as yourselves as the nurse comes to each one. We meet 11-1 which allows time for travelling. I question whether evenings advantageous or not

Yanno profile image
Yanno in reply to Alisonleicssupport

We usually meet every 3/4months. One of our members thought evenings may suit carers more - we may do a mini poll - watch this space!

Take care, Ian

Alisonleicssupport profile image
Alisonleicssupport in reply to Yanno

Sorry I clicked before finishing.

People with the condition may be too tired of an evening. Definitely would have been in my Mums case also carers may be worn out too 😀. Our turnout does vary in number from few to many. Mainly due to deterioration and newly diagnosed.and also how would are feeling or committed in the day.

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