Hello and Welcome to our new "Young Multiple Sclerosis Group"-

for Under 35's with MS in the Sheffield Region, England.

I'm Sylvie, I'm 26 and I have had MS for about 6 years now. I have learned a lot about the condition, and my message to you is that though there is no cure for MS, there are many things that you can do to HELP YOURSELF! Essentially we can do what we like with this group! It is there for us. I hope it will offer young people with MS in Sheffield a point of Contact and Support, and also be a place where we can share ideas and knowledge, enabling us to take control of MS. I thing I have learnt that every case of MS is different, and that what works for one may not work for another. So it is up to each individual to discover what can help them. When I first realised I had MS, I'll be honest with you, it was my worst nightmare. I lived my life in fear and thought it meant the end of a fulfilling life. I was wrong! It was just as the beginning of a different fulfilling life and I no longer live my life in fear. AS THEY SAY I MAY HAVE MS BUT IT DOESN'T HAVE ME! I have found some answers that work for me and I believe there are answers out there for everybody, provided that you are prepared to search and search, do what ever you have to do, and NEVER GIVE UP!!!

Letters- Tell me your story!

One of the hardest things in life is to find out that you have been diagnosed as with Multiple Sclerosis. Particularly after all those unpleasant test like a lumbar puncture After a few years living with MS , you realise that it is not the end of the world and hopefully you have found quite a few simple and inexpensive ways to live with the condition like:

*Meditation which is very effective and keeps you happy and your mood uplifted. ? Yoga which helps you to keep mobile and well. There are indeed many ways that one can use to keep going!

*Cannabis may help with your symptoms because it's an amazing anti-inflamatory substance. It's very effective fighting pain. and stopping spasms. Unfortunately however it is illegal. I can only suggest to you, try it and see what does it do for you. I find it helps a great deal in living with MS.

Yes it's not very nice to have been diagnosed, but you can do a lot of things to live with the condition. If you just been diagnosed try not to despair you are not alone! There are no magic tablets for it just your own will but there are many things to help yourself!

Daniel Buchsbaum from Mexico, 14 years diagnosed. Good luck to you and GOD bless.

Email: Buchsbaum@cwcom.net

NICE RULING NOT SO NICE

The National Institute of Clinical Excellence (NICE) is recommending that new disease modifying drugs, such as Beta interferon should not be funded by the NHS. NICE states that the drugs are being rejected 'on the basis of very careful consideration of the evidence, their modest clinical benefit appears to be outweighed by their very high cost'. This decision affects the three forms of Beta interferon (Betaferon, Rebif, and Avonex) as well as Copaxone (Glatiramer acetate), all licensed in the UK for the treatment of MS.

All major clinical trials have shown a reduction in relapse rate of about a third with the use of these drugs, slowing down the rate of disability for people with MS. The UK already has the lowest level of prescription of Beta interferon in Western Europe, Whilst in Finland, France and Germany, between 10-15% of their MS population is on beta interferon, in the UK the figure is just 3%. All this despite Beta interferon being recognised both in the UK and Internationally a clinically effective treatment for MS. Those who are lucky enough to already receive the drug, having met the criteria and won the post-code lottery, will continue getting the drugs, but it is bad luck for the rest of us. We will never find out if we could have benefited from one of them.The MS Society is in outrage and will be appealing this decision. People with MS will not be giving in easily.

We made international news with our successful lobby of parliament on the 8th of March this year, and will be continuing their campaign to Make sure we are heard! You can help by writing to Rod Taylor (Head of Appraisals at NICE), your local MP's or bombarding your local papers, expressing your views about the decision! NICE: 90, Long Acre, Covent Gardens, London, WC2E 9RZ. Web-site: www.nice.org.uk

MS Exercise Class

The Burton Street Project, has began an exercise class specifically for people with MS. The classes are being run by Richard Reitz, a qualified fitness instructor, and are tailored to meet individuals needs. So far the feed-back from 'exercisers' has been extremely positive! The classes are held on Friday mornings from 10.00-11.00am, and the good news is the local MS Society Branch is sponsoring them so they are FREE! The Burton Street Project is situated on Burton Street, which is off Langsett Road, on the town side of the Hillsborough Barracks. If you are taking the tram get off at the Bamforth Street stop on Langsett Road.

Sheffield MS Society Branch

Come a long to one of the meeting. They are on the first Thursday of each month and are held in the church hall of Stephen Hill Methodist church. The meeting starts at 7.30 p.m. and finishes just after 9 p.m. Each month there are different speakers and events, and you can get a bite to eat and chat over a cup of tea or coffee. If you need transport or any further information contact the David Cobb (Chairman) on 2499521.

Yoga for MS- Fighting Back!

I recently went on a five day 'Yoga for MS' course at the 'Yoga for Health Foundation' down in Bedfordshire. About a year a go I bought a video they produce 'Yoga for People with MS', and this got me started with Yoga, which has become a very important 'survival' tool to me. I believe in the Philosophy of 'Use it or lose It' and through Yoga I can feel myself getting stronger and gaining movement and flexibility in my legs.

The 'Yoga for Health Foundation' is a Residential Centre, comprising of a large old Country House set in beautiful grounds with a lake near-by. The atmosphere is very peaceful, the accommodation excellent, and the vegetarian food they serve is not only delicious but also very healthy! I went with my Mum, who as my carer went a long for half-price, and who also took part in the whole course. The Yoga was very beneficial for both of us.

The day started with an 'optional' 7 am Yoga Session, followed by breakfast. We then had another Yoga Session from 10.30 -12.00. A 12 noon there was a half an hour meditation session, followed by dinner, and then free-time till 16.00 when there was an activity, such as a talk about the philosophy of yoga, visualisation, relaxation, or meditation, and a discussion. We then had dinner and in the evening enjoyed an activity such as a quiz, music and singing, or just socialising! At the Yoga for Health Foundation people are encouraged to work with whatever movement they have and are taught to breath properly and to relax their body and mind. 'Yoga' breathing is very important and is very useful in overcoming fatigue.

They get everyone out of wheelchairs and if you can't move a limb, they (or your carer) will move it for you! It was wonderful to see people walking better and better as the week went on. I must have walked up and down the stairs about five times a day and I only occasionally used the wheelchair getting around the house (normally I use a wheelchair or scooter to get around!) The group of people on the course were fantastic, people who are searching for answers and are not giving in, people who don't make ms into an excuse for not being themselves and for not getting on with their lives, people who have, or are getting the ATTITUDE right! It was very re-freshing and I learnt a lot which I am now putting into practice in my daily life! The course costs £230 (including food & accommodation). Social services, the MS Society

The informative magazine for people affected by MS. Are you subscribed to this new publication? It is the MS Therapy Centre's National Magazine, edited by Judy Graham. If you've not already read Judy Graham's book 'Multiple Sclerosis- The Self-Help Guide', then please do so! Her new book 'Complimentary Therapies for MS' will also be out shortly!

New Pathways contains many useful and informative articles, including the latest MS News as well as peoples experiences good and bad in trying out different therapies, drugs, diets and supplements! The magazine is very positive, up-lifting, encouraging and open to new ideas! Subscription to this bimonthly magazine is a minimum payment of £10 (+ any donation to support them).

Send a cheque made payable to 'MSRC' to : The MSRC, 7 Peartree Business Centre, Peartree Road, Stanway, Colchester, Essex, CO3 5JN.

Email: themsrc@yahoo.com Website: www.msrc.co.uk

Sheffield MS Therapy Centre

If you've never been, I can recommend a visit! What do they have to offer? Well, I go there for Physiotherapy sessions, and monthly Reflexology, both of which I find extremely benefical. They are offer HBO (Hyperbaric Oxygen). This involves sitting in a tank and breathing pure Oxygen through a mask under pressure for about an hour! I've tried it and though it didn't benefit me personally very much, others have found it to be very helpful! And it's not at all scary or dangerous (I promise, it just makes you look like a deep-sea diver!). The Therapy centre also offers Aromatherapy, Shiatsu Massage, Chiropody, Nutritional Advise, Benefits Advise and Counselling. I have found it to be a friendly and welcoming Centre, where you can meet up , get any advise or support you may need and have a good old chat (and gossip!).

Carol Wilding the MS Therapy Centre Manager, works very hard and you can tell she loves her job! (She must do the efforts she puts in!). At present plans are going ahead for building a new Centre, which will be a lot bigger and offer an even better service. That's why we've been busy fund-raising. I was carried around Snowdon by a team of twelve busdrivers in July as part of the 'Snowdon Challenge', but that's another story! So where is this place? It's on Amos road, pretty close to the Bus-, Train- and Super Tram-terminus at Meadowhall, and is open Monday to Friday 9.00am to 4.00 pm.

For more information or for a chat call Carol on (2448435), and discover which therapy can help you! Sheffield MS Therapy Centre: Unit 6, 9 Amos Road, Sheffield, S9 1BX. Webpage: www.mstherapy.fsnet.co.uk Email: clare@mstherapy.fsnet.co.uk

MS may be four different Diseases

A recent study has shown four distinctly different patterns of demyelination in people with MS. This suggests that MS has four different sub-types with profound differences in the causes of the lesions And so require different treatments. Dr Hanns Lassman, from the University of Vienna in Austria carried out this study with his associates, are still not sure, however what those causes are. It is thought that the cause of MS may be viral or that it is an auto-immune disorder. This new study could explain why treatment for one category of MS does not work for another. We must ensure that this is not used as an excuse to restrict the availability of MS drugs because how will we know until we've had the chance to try them?

LEISURE SECTION

DON'T let MS stop you living life to the full!

That's the message in the following account sent in by one of our younger members. Carolyn was diagnosed five years ago, aged 23, and has been in a wheelchair for the past two years.

MY TRIP TO FLORIDA

Last year, I had the best holiday abroad ever - and I'm in a wheelchair ! The biggest love of my life is travelling and so, in 1997 when I had to start using a wheelchair, I was not impressed! I want to tell all wheelchair users who have not yet ventured abroad that it is TOTALLY POSSIBLE! My friend and I went to America and stayed in Florida. Yes, it was an obvious choice but, don't forget, this was my first trip abroad in a wheelchair. We flew with Virgin Airlines and the staff were fantastic (I will always use Virgin Airlines now and recommend them to anyone using a wheelchair). When I rang the Disability Hotline to say I needed more legroom, we were upgraded to 'premium' seats at no extra cost. I cannot transfer easily and so two specially-trained flight attendants lifted me from my chair to the seat. On arrival in Florida, we needed a good night's sleep before tackling the Theme Parks! We visited everything and I was able to go on every single ride. If, at any point, we were in difficulties, total strangers (always Americans) came rushing over to assist. This happened time and time again and Helen and I were moved by the kindness and concern of so many people. Even 50 miles away, on the East coast (the accessible Kennedy Space Centre is a MUST!) we were amazed how everything was adapted for disabled people - the toilets were huge and all the clothes shops even had 'disabled' changing rooms! The 'disabled' parking spaces were actually only used by disabled people (English take note!) with no cheating whatsoever! But, by far, the best memories of our holiday were the people we met. Americans are so accepting of disabled people - nothing strange to them, nothing new. Even the children are brought up to be aware of disability and rushed to help everywhere we went (sometimes apologising for not getting there sooner!). Their attitude is generations ahead of the English attitude. In America, even the national parks have walkways for wheelchair users ! I will visit again and again and, hopefully then, travel further afield. See you in Nepal !

Carolyn Shaw