All posts by Joy Walker

About Joy Walker

My name is Joy Walker. I have been clinically diagnosed with IBM. This means I have all the symptoms but 2 biopsies were not proven. This was in 2004. I have been very passionate about being involved with this support group. We have a FB page and now the long awaited web pages. We know we all need each other to ask questions. We arrange lunch KIT meet ups around the country. These face to face times are invaluable . Are next one is Holiday Inn Cambridge, on April 9th. We are not political, we do not advertise or sell ,we just inform each other. All the best Joy Walker (IBM)

A comment by Val Foreman on our recent KIT (Keep in Touch) meeting held at Cambridge


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We have just returned from a very enjoyable weekend in Cambridge which included attending an MFSN ‘KIT’ (Keep in Touch) meeting on Saturday 9th.

When I was first diagnosed with IBM I shrank away from meeting other warriors “further down the line” from me. Having done so though, at a support group conference, I quickly realised how interesting and encouraging the information shared was, not only for me, but also for my carer/husband.

This latest meet-up was once again as informative and enjoyable as others we have held, due to to the organisational skills of our Joy Walker and the excellent Holiday Inn venue. The hotel was ‘disabled friendly’ and the staff most helpful and accommodating.

The weekend started for me on the Friday evening when 9 of us, 6 of whom were staying overnight, had dinner together. It quickly felt like meeting old friends and we had a most enjoyable time.

We had a record number of 39 Myositis Warriors and their partners/ carers for the meeting the next day. After a meet and greet time over coffee, we were able to use one of the function rooms, complete with projector and screen for the speakers and plenty of room for our ‘equipment’?

Richard  Tear, Chairman of MFSN welcomed everyone and gave a brief but positive update on the progress of the group. He then introduced our first speaker, Andrea Russell, who is the area co-ordinator for a specific neuromuscular support service covering Norfolk and Suffolk.  Andrea said that this is a new initiative and it was hoped to roll out the service nationally.  She spoke about the work of the service including advice on swallowing problems, exercise, hydrotherapy, and available equipment. She mentioned a manual of equipment which is being produced in conjunction with Muscular Dystrophy UK. This was followed by a very helpful question and answer session.

Anneke Liefting, South East Regional Development Manager then picked up on some of the points made by Andrea and shared about Muscular Dystrophy’s involvement and support for Myositis sufferers including an advice ‘hotline’. She also encouraged us with ideas on how to get involved with fund raising to help finance events like this one.

Finally, David Morgan accompanied by his assistance dog Dalton, stole the show by giving a description and demonstration of how Dalton helps him in daily life.

It was very hard to hold back from giving Dalton lots of fuss, we couldn’t of course while he was working!

A delicious lunch of chicken or salmon was served in the restaurant, followed by desserts and a time to chat and make new friends.

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