Remap News

Hi

We have received the request below but unfortunately the Bath panel no longer exists.  If anyone is willing to travel to Bath  or can has any suggestions please reply to me

p.allchin@remap.org.uk

Thanks

My daughter Laura, who is 9 years old, has absence epilepsy and she has about 150 absences per day and each time it happens, her head rolls backwards and sometimes it rolls so far back it is actually hurting her neck.  At the end of the absence, she will lift her head back up again and carry on as normal.  She is in every other way a normal girl who is in mainstream school but sadly her absences are becoming quite bothersome for her due to the extension of her neck.

 What I think she needs is a support made of flexible material that will inhibit her neck from extending too far backward but will not stop all other neck movement.  I have just gained consent from her neurologist in London to get something designed for her if possible.  It would perhaps need to be worn like a sports bra but have some sort of device extending from it to support the lower part of her head.

 18 months ago, we did meet with your Bath REMAP representative and he thought something could be designed.  At the time, we had not gained the support from Laura’s consultant, so we did not pursue it, but now we have gained consent, I would really like to see if something could be done.  I guess realistically, her measurements would need to be taken for the design person to work out the best way for a device to work effectively, therefore, they would need to meet her.

 Let me know if you have some willing person in your organisation who may be able to help us.  As I said I would be more than willing to meet any costs incurred.

 I really appreciate your help.

 Best wishes

 Susie

Richard Brown, Basingstoke is asking for help with this please.

Lucy is a young, very sociable lady who is a resident in a very special care home supporting young adults with complex needs and visual impairments. Her health issues mean that she now has to have all her meals pureed to a very fine degree. The meals are industrially produced and supplied in frozen packs. Her carers say:

‘Once, her favourite thing to do was going out for meals and to be able to choose what she would like to eat from a menu. She has little control in her life due to health needs but she always remained in charge of her meal choices. This is now an impossible task. Restaurants and pubs refused to puree meals and any technology we purchased would not puree her meal to a safe consistency. If our individual had a small battery operated portable puree machine than she could go back to what she loved most. She could join her peers in restaurants of her choice and enjoy days out without having to bring a flask from home which contains her ready pureed meals.’

This the wish, but the deeper problem is that even in the care home kitchens they cannot produce meals to the right degree of ‘puree’ particularly when the ‘wish list’ includes meats and other difficult foods. At present she is entirely dependent on the commercial supplies.

We are out of practical ideas on this one, does anyone know an answer?

Richard Brown – Basingstoke Panel.

Email: brown@ilexind.plus.com  Tel: 01189 700100

Has anyone any ideas of how to help Terry from Jersey?

Thanks

Paula p.allchin@remap.org.uk

I don’t know if you might be able to help me please, I’ve stumbled across your website by pure chance. I’m disabled with multiple sclerosis, have limited mobility, but still drive with hand controls.

I was driving using the steering spinner shown on this web page and also below: http://alfredbekker.com/product/tetra-grip-flat-steering-spinner-quick-release/ ,

but when I changed car I left the spinner in the old car because the buyer wanted it and I thought it’d be a good time to treat myself to a brand new one with new foam, however Alfred Bekker have told me that they’ve stopped making those spinners because it was apparently too hard/time consuming to fit the foam all around.

Their webpage (http://alfredbekker.com/product/tetra-grip-flat-steering-spinner-quick-release/ ) has never been updated and still shows an old product image, to Alfred Bekker’s discredit and to my frustration, they seem incapable of correcting the erroneous photo.

Having actually bought the spinner again from Alfred Bekker, what I actually got was the new version, it’s like the photo below, except it has foam around it, i.e., the same as what I wanted, except it doesn’t join up in the middle.

So I’ve got an idea. Maybe I can get somebody to join a new spinner in the middle somehow by welding or bolting some metal across the gap, and then once the gap is bridged, get the whole oval covered in some sort of durable/comfortable foam or handlebar tape?

What do you think? Is that a viable idea? And would you maybe be able to help me please?

Thanks and regards, Terry Leavis

We’ve had a request through the Twitter about making a cup for a young man with autism – https://twitter.com/GrumpyCarer/status/798212421370318848

If anyone can help either tweet @GrumpyCarer  or contact David Martin d.martin@remap.org.uk

Thank you

(posted by Paula Allchin)

Colin Knight (Southampton group) has a client with MS, limited mobility and little strength in her arms. She has a large electric mobility scooter and a helping dog which likes to chase tennis balls for exercise. He is trying to make a device to throw a tennis ball about ten to twenty yards and after firing will “re-cock” itself electrically from the 12volt scooter supply. Needs to be fairly compact to mount on the scooter. There is a device called “Go Dog G4” but it is very bulky.

colinknight5@talktalk.net