Autumn 2005 Newsletter

 

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Articles

Get a grip!

Kate bags a Blagdon break

Hard cell is closing

Scanning speed is critical

Help us and yourself

Giving is not forgotten

 

Get a grip!

THE diagnosis of Multiple Sclerosis is one of the most intimidating and confusing things in life.

·       I will end up in a wheelchair.

·       I will not be able to do the things I did before.

·       My friends will reject me.

·       I will not be the same person.

I understand these feelings because I was struck by MS in the same way - confusion.

But do not think you are alone.

On Monday, September 5, a course called ‘Getting to Grips’ began at Manorhey Hotel,

130 Stretford Road, Urmston. This course is for recently diagnosed and other people affected by MS.

Here’s the programme:

Week 1: Sep 5

Week 2: Sep 12

Week 3: Sep 19

Week 4: Sep 26

Week 5: Oct 4

What MS is and ways to cope are discussed over the course.

‘Getting to Grips’ is for all people with MS, especially the newly diagnosed.

For more info contact Roz Fox 0161 707 9848 or email r.fox@salford.ac.uk

How to survive in the Community with MS. 

A conference on Social and Medical Aspects of Rehabilitation organised by the Bury and District Branch on Saturday, October 8. 

For more information contact Anne Ryder 0161 773 1418 or ater35@dsl.pipex.com

MS Society AGM

Hilton Birmingham Metropole Hotel, Saturday, October 22 and Sunday, October 23. The closing date for bookings is Friday, September 23.

Contact the National Centre on 0808 800 8000.

 

 

Kate bags a Blagdon break

CONGRATULATIONS to Kate Aston-Martin for scooping a half price cottage holiday at Blagdon Farm, Devon.

The prize was open to all Salford members in who answered our question.

Name the boxer that beat Kostya Tszyu  to win the IBF light-welterweight World boxing title in June? Was it:

a) Ricky “The Hitman” Hatton

b) Ukan “Leave Your” Hatton

c) Derek “Honest” Hatton

John correctly identified a) Ricky “The Hitman” Hatton.

As a result, she will enjoy what local MS Society member Anne-Marie Broadley called “Heaven”. “The scenery was beautiful and we had a balcony, so we could spend time relaxing and enjoying the view,” she said. “There was plenty of activities to get involved in and some pubs near by. “Our favourite was the Village Inn, where there was excellent food on offer.” Don’t be disappointed because your name did not come out.

Any Salford MS Society member that books a holiday, or break, at Blagdon Farm, from October 2005 to March 2006 (excluding Christmas and the New Year) will get 5% off the price and 5% of the total price will be donated to the Salford MS Society, courtesy of the kind people at Blagdon Farm.

Contact details

Blagdon Farm Country Holidays, Ashwater, Beaworthy,  Devon EX21 5DF.

Telephone: 01409 211509

Fax: 01409 211510

Website: www.

blagdon-farm.co.uk

E-mail: info@

blagdon-farm.co.uk

 

Hard cell is closing

RECENT reports about a Merseyside lady, with MS, who received stem cell treatment in Holland has brought the issue back to the top of the agenda.

But the MS Society never let the research fade. They have featured reports (on the national website) about three people with rapidly progressing MS who have received stem cell therapy over the last few years.

The course of MS is variable with some people having minimal symptoms for many years and others having more progressive disease from onset.

A small percentage of people with MS have an “Aggressive” form, characterised by rapid accumulation of disability from diagnosis and, in some cases, frequent and disabling relapses.  A 16-year-old male, 40-year-old female and 18-year-old female, all of whom were restricted to a wheelchair or bed and had additional significant problems, within a year after the onset of symptoms, were treated with stem cell therapy. All had not responded to standard therapies and had a life- threatening prognosis.

In this study, stem cells (unspecialised cells which have the capacity to develop into lots of cell types, including immune cells) were collected from the bone marrow of the participants.

Theoretically, removing all of the body’s immune cells, using powerful immunosuppressant drugs and replacing them with correctly functioning immune cells could reduce or stop MS-related damage and limit disability. Consequently, the participants’ own stem cells were used to replace the immune cells that had been removed with immunosuppressive drugs.

In all three cases there were complications immediately after the stem cell therapy – this included fever, problems with blood clots and severe inflammation of the intestine, although all three recovered from these symptoms. Results showed significant improvements in their level of disability and all three were able to walk without assistance for at least 300m, when assessed 14 months after treatment for one participant and at least two years after treatment for the other two participants.

MRI scans, which are able to measure the amount of MS related damage in the brain and spinal cord, also showed a significant reduction in the amount of damage present.

Stem cell therapy showed significant improvements in disability and it appears to be a lasting effect. These results support the theory that “Aggressive” MS is characterised by a severe attack on myelin and nerve fibres by immune cells and consequently immunosuppression followed by replacement of immune cells using stem cells were successful in halting, and, to an extent, reversing this attack. The rarity of this type of MS means that controlled clinical trials are not possible. However, the authors highlight that

in aggressive MS (with a life-threatening prognosis) where conventional therapies have failed, stem cell therapy is one possibility, despite the potential side effects.

The MS Society has issued the following statement:

“The potential for stem cell therapy to repair the damage caused in MS is well recognised.

The MS Society is already funding research in Bristol and has recently committed more than £1m to establish a centre for myelin repair in Cambridge. Research into stems cells and MS is at an early stage.”

 

Scanning speed is critical

People facing a long wait for an MRI and CT scans at their local hospital will be offered the choice of going to another hospital to have their scan quicker.

Health Secretary, Patricia Hewitt, said: "By 2008, nobody will wait longer than 18 weeks from GP referral to their treatment in hospital. Speedier access to diagnostic tests is an essential part of achieving that."

 

Help us and yourself

Getting involved can be rewarding and fun.

And it helps the MS Society to continue the valuable work done for those affected by MS.

Without individual and business support the MS Society could not have made such a difference to people’s lives. Just a little of your time or money is vital for everything done and always welcome. Help us to meet the challenge of MS.

The MS Society needs £1.2m to fund a ground breaking research programme that could relieve symptoms and prevent the progression of disability in MS. 

Join Us!

Becoming a member is a benefits to you and us! You receive MS Matters magazine and it will help to keep our services running.

Volunteering

As a volunteer you can improve your skills and have fun at the same time as helping others. 

One person with MS, Sue, has made the most of volunteering on the Helpline

“I was diagnosed with remitting/relapsing MS in 1990 and took early retirement from a career in nursing in 1995 following two severe relapses. Seeing an ad in MS Matters for volunteers for the home network, I applied and started my training in spring 1999. It was sufficiently demanding to give me the buzz I missed from working while giving me a chance to deal with people again.”

Sue is now making a difference as one the 8000 national volunteers, actively working on behalf of the MS Society. We are the largest national voluntary organisation that provides support for people affected by multiple sclerosis in the UK. You don’t have to be someone affected by MS to help, you may want to develop new skills and meet new people.

There are so many ways you can volunteer to help the MS Society and people affected by MS.

·       Donations - Even small amounts make a difference!

·       Campaigning - Find out how YOU can make a difference and get involved.

·       Fundraising - Take part in sponsored events or help to  publicise them in any way you can.

Join the Salford branch

If you want to raise money for YOUR people, join the Salford MS Society:

Contact Salford Chair, Roz Fox, on 0161 707 9848.

Email support@salfordmssociety.org.uk

Visit YOUR website at www.salfordmssociety.org.uk

 

Giving is not forgotten

The Year of the Volunteer is a celebration of the amazing work of volunteers.

A joint campaign between CSV, Volunteering England and the Home Office, the Year aims to give more people the opportunity to try volunteering, learn new skills and contribute to their communities. The Year of the Volunteer Awards have been created to acknowledge and celebrate the contribution of Volunteers. Volunteers can be nominated in one of five categories and will be rewarded with a HM Mint Volunteer Medal.

Regional volunteer Awards ceremonies will take place in October 2005 leading to a national Awards Ceremony, supported by Ministers and celebrities in January 2006.

Nomination forms are available from the Year of the Volunteer site www.yearofthevolunteer.org or by calling 020 7812 0034.

Year of the volunteer 2005 is supported by The Home Office, Community Service Volunteers (CSV) and Volunteering England.