June, July and August 2006

At Last

Something that has been long overdue is at last being undertaken. The Multiple Sclerosis Society Scotland, in collaboration with people with MS, Universities, MS Nurses and Neurologists, are in the process of establishing a Scottish Register that it is hoped will eventually include all people with MS.

In time this should help bona fide researchers answer such enigmas as how three unrelated people who lived within a street of each other in childhood and were in the same primary school class all met up again at the Stuart Resource Centre after 40 years – all having been diagnosed with secondary progressive MS. And how at least five unrelated people with MS are living in one street of a small Moray Firth fishing village.

The costs of setting up such a register are small, the potential benefits are enormous.

Local MS Research

Emily Mathey is an Australian who has come to Scotland as a research fellow at the Department of Medicine and Therapeutics at Foresterhill, Aberdeen. We asked her to give us a (not too technical) idea of the work she is currently involved with.

My research focuses on the role of antibodies in the pathogenesis of MS. Antibodies are proteins from the immune system that mark out foreign invaders such as viruses or bacteria for destruction. In MS autoantibodies (antibodies that bind to the person’s own protein instead of a foreign protein) can bind to the surface of myelin or other targets in the brain and spinal cord and increase the extent of the damage. People with MS develop antibodies to a wide range of different targets but trying to find out what they are is like looking for a needle in a haystack.

At the moment I am focusing on the response to a protein called NG2, which is found on the surface of cells called oligodendrocyte precursor cells (OPCs). OPCs are the cells that repair the demyelination in some MS lesions. If antibodies present in MS patients bind to the OPCs they could be prevented from carrying out their job of repairing the lesions and remyelination would be prevented. My main aims are to determine how autoantibody responses may influence disease activity in MS, or whether they might be used to predict how the disease will progress.

Out of the lab I am training hard to cycle a stage of the Tour de France in an attempt to raise money for the Stuart Resource Centre. If you and your friends would like to support this effort you can donate online by visiting the webpage: http://www.justgiving.com/etape2006 or there are sponsorship forms at the SRC where you can donate any money.

Psychologists & Physios – Apply Now

While not for an instant taking their attention from what most people believe to be the most important aspect of MS research i.e. prevention and cure, the MS Society has placed new emphasis on funding research which will improve the quality of life for people living with MS. In 2006 the Society wishes to commission new research in specifically identified areas of physiotherapy and psychological support. If you’re a professional who has long cherished the idea of research in these areas have a look at the MS Society website www.mssociety.org.uk. Informal discussion welcome. Deadline 5th June 2006. – so don’t delay!

Reaching Out

In the early nineties, long before the MS Society “opened up” to all people with MS regardless of whether or not they were society members, the forward thinking people of the Aberdeen Branch of the MS Society set up the Stuart Resource Centre to provide information and support to all people with MS, their families and carers in the whole of the area covered by the neurologists working out of Foresterhill Hospital – not just those in and around Aberdeen.

We’re delighted when people from Thurso and Orkney come to see us when they’re in Aberdeen for whatever reason (often hospital visits) and although SRC can’t often get out to arrange information days in places like Elgin or Peterhead we can arrange something at the centre for all of you out there to come here.

The SRC is holding an OUTREACH OPEN DAY for people with MS and their carers on Tuesday 19th September. If a few of you get together from Fraserburgh or Foggieloan to arrange the transport, we’ll provide the information, entertainment and refreshments. We’ll be working in close contact with your local MS Society Branch officers to help make this a day to remember. So watch this space.

Closer Links

The Stuart Resource Centre recently hosted a very successful MS/ Parkinson’s Study Day. Nearly 60 people from Health and Social work attended the event. Speakers included a Neurologist, Specialised Nurses, Neuropsychologist, people with Multiple Sclerosis, Parkinson’s and Carers. The day was rounded off by Mark Hazelwood the Director of MS Scotland who is also the Chairperson of The Scottish Neurological Alliance.

Stuart Resource Centre staff will be meeting with representatives of other local Neurological organisations to look at the possibility of organising an Information Day at the Centre in the near future.

One nurse sent us this message – “What a great idea to have closer links. As a single worker covering Grampian and Highland area I am always very pushed for time and have used up all my study leave for the moment. However if there was an opportunity at a later date to meet or if we could keep in e-mail contact I would like to become involved.”

Messages like that let us know we’re getting it right!!

Cooling Vests

Many people with MS (PWMS) report that their symptoms get worse when they get hot, but that cooling helps. Back in 2001 researchers therefore developed a cooling vest that was tested in a clinical trial in Holland. The trial tested whether the vest would improve peoples’ symptoms and also tried to find out exactly how cooling has an effect.

Ten PWMS, with symptoms affected by heat were randomly allocated to one of two groups. One group received sham cooling (they were only cooled to 26 degrees Centigrade) while the other group was cooled properly all the way down to 7 degrees Centigrade. Clinical tests were performed before and 3 hours after the 1 hour cooling session.

Proper cooling to 7 Centigrade significantly improved peoples’ fatigue, balance & muscle strength in their legs. None of these improvements were observed with the sham cooling.

The key messages from the trial were:

Improvement of MS symptoms by cooling has been reported by many people.
A cooling vest used by PWMS improves fatigue, balance and leg muscle strength.
The effects of cooling might relate to changes in metabolism and conduction of nerve signals.
Higher blood nitric oxide levels are found in PWMS compared to people without MS.
Cooling reduces these nitric oxide levels
More research is required on the effect of cooling to determine exactly how and why cooling affects MS symptoms and if nitric oxide is involved.

Despite the fact that summer and therefore (some) heat comes round each year, unfortunately, there seems to have been very little further research into these vests. If anyone has tried them, could you please let us know how you got on?

MS Working Group

After almost 2 years the MS Working Group has almost completed it’s initial work. The finished paper will be presented to the Grampian Wide Partnership, a group of people from Health and Social Work who plan future services in the Grampian Region. The paper will have a number of recommendations that hopefully will be put into place, however this will all depend on the affordability of any project both in terms of money and manpower.

But some progress has already been made in response to information received while undertaking this review. Many people who attended the 4 workshops said that their GP had little or no knowledge about MS and the working group are planning a training day for GP’s based in Aberdeen and Aberdeenshire on the afternoon of 13th September. The event will be held at the Stuart Resource Centre and the programme will consist mainly of presenting signs and symptoms, diagnosis, relapse management, disease modifying drugs, steroid treatment, management of symptoms, rehabilitation and social care.

The training will be given by a Neurologist, MS Nurse, Rehabilitation Specialist and Rehab Nurse. Sandra White from the Deeside Neurological Service will also speak about the service that was set up 3 years ago from monies received from the National Lottery and the MS Society will speak about the work it carries out in the area in relation to Social Care.

The training has been arranged through Protected Learning Time (PLT) where staff in Health Centres and Medical Practices are given training one afternoon per month.

It is hoped that there will be a good turnout of GP’s to the event as the Working Group propose to run a similar event for GP’s on a regular basis. GP’s will be notified of the event by staff from NHS Grampian who have responsibility for arranging training through the Protected Learning Time (PLT) A similar very successful event for Moray GP’s and other Health Service Staff was held in Elgin on Thursday 25th May.

Please encourage your GP to come to the event.

Mile of Copper

Our mile of copper appeal has now passed the £2,000 mark, keep it coming please.

Watch out for Cats’ Tails

Buying a motorised wheelchair or scooter is a huge investment. Last year we warned you about “high pressure” salesmen and this year we’re repeating the warning. After all these silver tongued people make large commissions on each sale so are naturally going to try to get you to sign on the dotted line. It’s well known that people are reluctant to “opt out” once they’ve committed to something so second thoughts can turn into twentysecond thoughts and suddenly the seven day “cooling off” period has passed! (Remember you don’t even have 7 days grace if you have responded to an ad and “invited” the sales person to your home.) And you could be stuck with something that cost an awful lot of money and is virtually useless for you

There’s plenty to think about before even looking at any chair or scooter.

  • Why do you want one?
  • If a chair, why is the NHS not supplying it?
  • What are you going to use it for?
  • What distances do you intend to travel?
  • Do you have to go uphill?
  • Can it be folded away to go in the boot of a car?
  • Can you fold it away or would you need help?
  • And many, many more.

Each has their advantages and disadvantages.

  • E.g. Electric chairs are handy for moving around the house if your arms and upper body haven’t the strength to propel you – but they may only have a range of 5-6 miles fully charged and that on the flat.
  • A scooter with small wheels might only go about 10 – 12 miles on the flat and may not have the power to go uphill – stopping dead and leaving you stranded.
  • Bigger scooters might go up to 25 miles over most terrain but are too big to even get into a van.

Other things to consider are:

  • Do you have the confidence to go out on your own – you can feel very vulnerable on your own away from friends.
  • Or will the sense of independence and freedom being mobile again generates outweigh the potential problems of breaking down?

Seemingly insignificant things can also make a difference:

  • Do you choose something with a frame around which you can put a wind and watertight cover – this can be bulky and reduce visibility considerably especially on a rainy day – or do you go for the “cyclist cape” option?

One lady we talked to had this to say: “ I have a powerful scooter which gives plenty of mileage. It gives me the freedom to go out and be in charge of myself. I have unrestricted use and unrestricted freedom. I can go by myself to Foresterhill, right through the hospital. Only when it’s snowing am I kept indoors. But I carefully plan my routes and for safety stay on routes where there are likely to be other people. If at all possible, “recce” the routes you’re likely to use most with someone able bodied first. Shop around for what would be best for you. Watch out for pedestrians they like to nip in front of you. And watch out for cats’ tails, I once reversed over one.”

New Essentials

The MS SOCIETY have produced 6 new publications:

RESEARCH MATTERS
ESSENTIALS 8: Getting the best from social work in Scotland
ESSENTIALS 15: Women’s issues and MS
ESSENTIALS 16: Support for people severely affected by MS
ESSENTIALS 17: Pain and sensory changes
ESSENTIALS 18: Complimentary and alternative medicine.

MS in Translation

The Stuart Resource Centre is committed to reaching out to people with whom we have little contact at the moment, but who need access to more information about MS and the support available. The MS Society have translated a number of documents for people who have been newly diagnosed into languages other than English. “Just diagnosed” is available in 8 languages Turkish, Welsh, Hindi, Punjabi, Gujarati, Farsi, Urdu and Begali.

Please contact the SRC if you would like copies of any of these publications mentioned above.

MS Connect

The magazine “MS Scotland” published by the MS Society Scotland has rebranded itself and now goes under the heading “MS Connect – making sense of ms in Scotland”

If you’re a member of the MS Society, Volume 1 Issue 2 of this glossy new magazine should have arrived through your doors just recently. If you’re not a member you’re missing out and you know how to rectify the situation. Remember you don’t have to have MS to be a member of the Society you can join nationally or locally as a professional or a supporter and it only costs £5.00 per year.

British Gas Rebates

If you are a British Gas customer and receiving certain welfare benefits or tax credits, you may qualify for a fuel rebate. British Gas is providing rebates of up to £90 for Winter 2006/7 limited to the first 300,000 customers. To apply contact British Gas on 0845 601 2006. You will need to quote your British Gas account number and say which benefit you are receiving.

Accessibile Aberdeen

As part of her work placement at Horizons Rehabilitation Centre, Kirsty Forbes, a 3rd year Robert Gordon’s University Corporate Communications student, was asked to compile a list of sports and leisure facilities in Aberdeen and report on how accessible the buildings are. During Kirsty’s six-week period at Horizons, Sheila Whyte, her supervisor, was there to give advice on format and content. Kirsty then spent time researching disability issues before starting the project itself. To keep the entries consistent, a set of questions was agreed to reflect the needs of accessibility. Then Kirsty either visited or telephoned each venue in person. As an accomplished artist Kirsty also designed the front cover for the booklet.

“Accessible Aberdeen – Leisure and Recreation in Aberdeen” compiled by Kirsty Forbes with the help of Sheila Whyte, Information Officer, Horizons Rehabilitation Centre is now available from either Horizons Rehabilitation Centre, on 01224 556873 or from the Stuart Resource Centre 0n 01224 692777.