Telford TM Support Group 12th July 2007
Attendance
Sandy, Robert, Ruth, Jim, Sue, Mike, Anna, Kelvin, Jan, Eve and Linda
Apologises
Margaret, Steven and Carol
Anna and Kelvin welcomed everybody to the meeting.
We started of by talking about the upcoming conference in London on the 13th October.
The address is 24 Stephenson Street, London NW1 2DP.
The London group will send out the brochure when it is ready.
We also spoke about how to get to the conference. Anna will investigate the option to get a mini bus to take us down and to do a pick up in Birmingham. More information to follow.
We also discussed the news about TM Sufferers to have full use of the MS societies services.
The MS society has issued an official assurance that all members of the TM Society are eligible to use MS society local services and join MS Society branches since TM and Devics are definitely related conditions to MS (According to MS societies constitution) Anna has been in contact with the Chair and secretary of the Telford MS society branch and was given some information about what services are available in the Telford area. We all agreed that it was very exciting to be recognised and also to have more access to support.
Carried on with the news about being able to get a Spinal Cord implement on NHS.
Roger (London group) is finally 85% or more pain free after six and a half years of pain.
He had a spinal implement on the NHS. This information was relayed by Lew from the London group. Very interesting to hear and we are all pleased Roger is getting better. More information to follow.
Kelvin told us about the Cinema Exhibitors’ Association Card (www.ceacard.co.uk). This is a national card that can be used to verify the holder is entitled to one free ticket for a person accompanying them to the cinema. To apply for the card, you will need to meet one or more of the following criteria:
a) Be in receipt of the disability living allowance or attendance allowance
b) Be a registered blind person
The card is valid for 3 years from the date of issue
We also spoke about Just can’t wait cards and about keys to disable toilets.
The National Key Scheme offers independent access by disabled people to around 7,000 locked public toilets around the country. The key costs £4.11 incl. VAT.
You can get a key from www.radar.org.uk.
About the Just can’t wait card, I have tried to order one from Incontact but no one has got back to me yet. You can show this card when asking to use the toilet of a shop, restaurant or other UK business. It doesn't guarantee you access to their toilets, but it proves that you have a genuine medical condition which requires the urgent use of a toilet. Anyone who would like to find out more, here is the address:
Incontact
United House
North Road
London N7 9DP
Tel: 0870 770 3246
e-mail: info@incontact.org web: www.incontact.org
We also reminded our members that the TM society get back 5-6% on all orders placed on the Amazon website. Make sure when you order to go from the link on the homepage of the TM site http://www.myelitis.org.uk/ Scroll down to find the link at the bottom of the web page.
GoodSearch
http://www.goodsearch.com/
The Transverse Myelitis Association is participating in GoodSearch, a new Internet search engine that donates half of the advertising revenue it earns to charity. Each time you use GoodSearch and designate the TMA as your charity of choice, GoodSearch will donate a portion of the advertising revenue earned from the search to the Transverse Myelitis Association.
It’s easy to use. Just go to the GoodSearch homepage www.goodsearch.com and type ‘myelitis’ into the “Who do you GoodSearch for?” box, and click verify. After the first time, each time you return to the home page, The Transverse Myelitis Association will appear as your designated charity. There is even a button you can click to see the number of searches and the amount raised. With your help, GoodSearch can generate donations, at no cost to you that will help fund the goals of The TMA: http://www.goodsearch.com/?charityid=607112
After a well earned coffee break, we welcomed new member Ruth and her husband Jim to the meeting.
Ruth was diagnosed with TM in December last year. She got flu symptoms and went to see her GP because of the pain in her back and the loss of feeling. The GP said she had sciatica. Ruth was sent to Bromsgrove for an x-ray. It didn’t get better and she went back to see her GP. This time she saw a different doctor who asked her to sit down and wait until he had seen the last two patients. After she got back in to see the GP, he sat her down and said he suspected she had TM. He had come across this before. Later that night, Ruth was admitted to hospital and had a MRI scan and a lumbar puncture. She was put on a course of steroids. The doctors at the hospital were very short on information but the registrar was lovely, sat down and told her more and what to expect. After Ruth left hospital, she was in a wheelchair. In January she woke up, the TM had come back and was in her hands and in her face. Ruth is now using a walking stick and is slowly getting back her strength.
Unfortunately, that was all we had time for this meeting.
The next meeting will be on Thursday 25th October from 12 noon to 2 pm at Ketley Parish Community Centre in Telford. Please be advised about the new time.
Also if any member needs to get in contact with us, you can reach Anna on 01952 270987 or annaphabegger@myelitis.org.uk or Kelvin on 01384 350286 or kelvin.holmes@blueyonder.co.uk
All the Best
Anna and Kelvin
DISCLAIMER: The TMA does not endorse any of the medications, treatments or products reported. This information is intended only to keep you informed. We strongly advise that you check any drugs or treatments mentioned with your doctor