Found this article at http://www.talkaboutsupport.com/group/a ... sclerosis/
posted by msbuckaroo
Article originally from:
http://icberkshire.icnetwork.co.uk/0100 ... _page.html
MS mum vows: 'I'll go abroad to die without new drug' Aug 26 2004
Exclusive By Francis Batt
THE much-loved manager of a thriving sports and social club says she will choose to die if she is not allowed access to a new wonder drug.
Brenda Snelling, 59, who has managed New Windsor Community Association's Sports and Social Club for almost 25 years, is facing increasing disablement as a result of Multiple Sclerosis.
Like many sufferers, she has heard of a new wonder drug which is having a miraculous effect on the quality of life for sufferers who have tried it. But the drug, Aimspro, is only at the testing stage and may not be available for years. And while there are 250 people taking the drug, until it gets an offical government licence that number cannot be extended.
This week, Mrs Snelling told friends and the Express she will go abroad to a country that allows euthanasia if she can't try the new drug.
A 59-YEAR-OLD woman facing progressive paralysis says she will go to a country that allows euthanasia unless she is allowed to try a new 'wonder drug'.
Brenda Snelling has managed the New Windsor Community Association's Sports and Social Club in Hanover Way, Windsor for almost 25 years. She lives nearby and is a much-loved member of the community.
She was diagnosed with Multiple Sclerosis in 1993 and has been in a wheelchair for 18 months. Now she is losing the use of her arms and hands as well.
She first became aware of the drug called Aimspro when a welfare worker told her about it.
She read about its remarkable success rate in the magazine New Pathways, produced for the MS Resource Centre. But when she contacted the company Daval International which makes the drug she was told that only people specially selected to take part in trials could have it, until it had been proved not to have side effects.
It could be years before the drug is made generally available.
But Mrs Snelling said: "One woman was almost blind and apparently after taking the drug she can now see. People have been able to get up after being stuck in wheelchairs. There are about 300 people in Britain involved in the trials but 85,000 of us have the disease."
Mrs Snelling accepts that there have to be tough tests before a new drug is made generally available but she said: "I'm nearly 60. If it turns out there are side effects I will face that. I want the chance to get better and there is not a lot of time."
Her husband Ed is also disabled. The couple have been married 42 years and have a son Paul and two step-granddaughters. Mrs Snelling said: "My husband has to do everything for me. I can't do any cleaning, washing up, I can't make the beds or cook - I'm banned from the kitchen because it's too dangerous. I get double vision now if I try to read, my hands are so bad and I can feel them getting a little worse every week.
"I fear I soon won't be able to use them at all and if that is the case I won't want to live as I can't visualise a life where someone else has to look after me. I would then go to a country that allows voluntary euthanasia, but I'm angry that it is getting to this stage when there is a drug that does seem to work. No-one is suggesting it is a cure. But it could be like insulin, the chance to give sufferers from a nasty disease a chance at life."
She plans to write to Windsor's MP Michael Trend and the Health Minister John Reid asking for rules to be relaxed to make the drug available to a wider range of people.
What is MS?
Multiple Sclerosis (MS) is a abling neurological condition affecting around 85,000 people in the UK. MS is the result of damage to the protective sheath surrounding the nerve fibres of the central nervous system. This intereferes with the messages between the brain and other parts of the body.
What Are The Symptoms?
MS can be accompanied by burning sensations, tingling, 'electric shock' type feelings, spasms and facial pain. Normal pain killers have been proved not to give effective relief.
Sufferers also have to endure muscular pain.
What causes MS?
The causes of the disease areunknown, but some researchers believe that an environmental agent can trigger the illness in a person who is genetically susceptible.
Some famous people with MS
Fiona MacTaggart, Labour MP for Slough; Bryan Forbes, writer and director; Terri Garr, actress; and Richard Pryor, comedian and actor.
Personal comment, I know how she feals and I'm only 42, Dx'd in 1993. But to wait years for it, seems sometimes it's just not worth it. Living like that.