June, July and August 2004

New Treatment for Tremor
Up to 75% of people with MS are estimated to experience tremor. The most common form is called essential (or intention) tremor (ET) which occurs when people want to do or reach for something.

Ethanol (a type of alcohol) alleviates tremor in animal models, but effects are not known on humans. This study aimed to assess the tolerability, safety and effectiveness of a low dose of 1-octanol (a type of ethanol which is used as a food flavouring) on ET.

Twelve participants with ET received capsules of either 1-octanol or placebo (a “control” substance causing no effect) The intensity of the tremor was measured before treatment, and up to 6 hours afterwards, using a device attached to the arm, which registered the amount of movement.

Results showed that a single dose of 1-octanol significantly reduced the intensity of tremor for up to 90 minutes. There was no change in tremor in the placebo group. Minimal side effects were reported and there were no signs of intoxication.

Preliminary findings suggest a potential role for the use of 1-octanol in ET. The authors suggest further studies are needed to look at the effects on a larger number of people and to investigate the effect of reducing tremor on functional activities such as dressing or writing.

Further studies on tolerability, effectiveness, potential side effects and duration are proposed.

Vitamin D Cuts MS Risk
Women who take vitamin D supplements are 40% less likely to develop MS. A team at Harvard University found eating a diet rich in vitamin D alone was not enough to provide the same protection. Nearly 190,000 women took part in the study.

Researcher Dr. Kassandra Munger said: “It’s exciting to think something as simple as taking a multivitamin could reduce your risk of developing MS.”

The theory that Vitamin D plays a significant role in protecting against MS comes from data which shows that the condition is far more common in countries furthest from the equator. People in these countries are exposed to less sunlight. Sunlight triggers a chemical reaction in the body leading to Vitamin D production.

Separate studies have also shown that Vitamin D supplements can prevent or favourably affect the course of a disease similar to MS in mice.
Other research has found that people with MS tend to have insufficient levels of vitamin D, that periods of low Vitamin D occur before times of high disease activity and periods of high Vitamin D precede times of low disease activity.

A Tool for Diagnosis
A new magnetic resonance technique may allow for earlier diagnosis of MS according to research presented at the Radiological Society of North America.

Using MS spectroscopy, investigators at New York University have developed a method called whole-brain N- acetylaspartate to measure the amount of this chemical in the brain. This allows them to determine the severity of a patient’s MS, as well as gauge the success of treatment.

“MS leads to having less and less N-acetylaspartate in the brain” said lead study author Dr. Oded Gonen a professor of radiology at the university. “ The deficit is proportional to the severity of the disease, as is the rate of the loss of the chemical.”

The new procedure is performed at the same time the patient undergoes clinical MR imaging. The radiologist adds MR spectroscopy, which provides chemical information at the cellular level.

Cynthia Benz
Leading author Cynthia Benz, who wrote the inspiring book “Coping with Multiple Sclerosis” gave a talk at the Stuart Resource Centre on April 21st. Cynthia now spends a great deal of her time involved in MS research studies around the country, and having had MS for over 25 years, she is an undoubted authority on the subject.

Cynthia is a fluent and relaxed speaker, and she spoke for over an hour in a refreshing and open way, and presented her ideas clearly and with a light touch. An audience of over forty people attended the evening and enjoyed the presentation by this excellent speaker.

Cynthia started by explaining that her talk would have four main themes, and that the best way of focusing on these ideas would be to illustrate the heading in the form of a layer cake, with each layer representing a topic.

The subjects covered included Scientific Facts – a brief overview of the different types of MS, and conjecture about the validity of the ‘labels’ given to these different strains of the disease. Next came Living in our Bodies, and the idea here was that as everyone is different if follows that each individual has a different way of managing and coping with their illness. The third layer of the imaginary cake was called the 3Rs which Cynthia explained were Responsibility, Rehabilitation and Recovery. And the final layer was called Supportive Care, where Cynthia put forward her idea that palliative care could and should be extended to include MS suffers.

Note: “Coping with Multiple Sclerosis – a practical guide to living with the symptoms and understanding the treatments” is now unfortunately out of print. However, the Stuart Resource Centre holds a copy in the library, and can be borrowed from there, on the strict understanding that it is promptly returned! The good news is that Cynthia is putting together an updated edition, which is now nearing completion.

Janet McLaren

Footnote: 14 people with MS came to the morning workshop led by Cynthia and all were
inspired by the experience.

We would like to take this opportunity of thanking Dr. Cynthia Benz for coming to Aberdeen to share her knowledge with us.

As Easy as Breathing?
Yoga offers a number of benefits to people with multiple sclerosis but perhaps the most important and yet least known is that derived through something as seemingly simple as deep breathing.

The practice of slow, deep breathing helps to relax the muscles of the body and so allows blood to flow more freely through them which in turn increases the amount of oxygen getting into the muscles.

The deepening of the breath also increases oxygen to the internal organs possibly improving their function. As well as increased oxygen supply, the practice of deep breathing massages the internal organs and improves circulation. Breathing deeply perhaps twice per day for 10 minutes each time can greatly increase the oxygen to the body and with more time and practice the breath naturally deepens and so
increases the amount of daily oxygen taken into the cells of the body so promoting better health.

The use of the breath helps the body move into more postures (movements) with more ease and this has the added effect of relaxing the muscles and allowing more mobility. Another great advantage of slow, deep breathing is the sensation of relaxation and feelings of peace which it brings.

Yoga is no cure for MS but rather promotes possible improvements of the condition and feelings of relaxation and peace.

I am more than happy to talk you through this slow deep breathing technique.

Myself and other students would love to meet you and for you to join us for tea afterwards.
Yoga Sessions – Fridays, 10.30 am – 11.30 am at the Stuart Resource Centre.

Sheila Harper

Cannabis Spray Soon?
GW Pharmaceuticals said it was close to winning approval for it’s “Sativex” oral spray for people with MS. It was originally expected that the drug would be given the all-clear in 2003. Some analysts warned that the Medicines and Health Care Products Regulatory Agency had raised questions about the dossier submitted for the drug application. But executive chairman, Geoffrey Guy, said that this was a normal procedure and that the questions had been answered.

Policy Makers on the Sport at the SRC
On Monday 21st June a group of 4 local MSP’s, one from each of the major parties, the Convenor of Aberdeen City Council’s Social Work Committee, the Director of the Housing Department (and other officials from the area) will be at the Stuart Resource Centre to participate in a “Questions and Answers” session. The “inquisitors” will be mostly people with MS and their carers.

The background to this meeting starts in the year 2000 when a Scottish Needs Assessment Program (SNAP) Report, initiated by an expert group of health professionals, concluded that there were wide variations in the accessibility and quality of care for patients with MS and that good standards of care were not being met throughout Scotland. It also made a number of recommendations.

Time went by, the SNAP report was not implemented and in November 2003 over 200 people with MS lobbied their MSP’s in Edinburgh to provide the “Bare Necessities” i.e. a national standard of care that Health Boards would have to meet. The main requirements were identified as:-

quick access to a neurologist
advice and support from an MS nurse at the time of diagnosis
appropriate respite care, especially for young people
information from care professionals about MS and locally available services
easy access to professionals with expertise in MS when it is needed
Due in part to the success of the Bare Necessities Campaign, during National MS Awareness Week in April this year, a motion in the name of Tricia Marwick MSP for Mid Scotland and Fife was debated in Parliament. As well as paying tribute to the work of the MS Society the motion
debated: “…… recognises that there remain serious shortcomings in treatment and support for multiple sclerosis in Scotland, and believes that the Scottish Executive should develop a national standard of care for people with multiple sclerosis to ensure that levels of treatment and support are the same regardless of where in Scotland they live.”

The motion was supported by 43 MSPs and amongst those representing us locally were Brian Adam, David Davidson, Richard Lochhead and Nanette Milne.

The debate was concluded without any question being put, but in a response to the speakers
Deputy Minister for Health and Community Care Mr. Tom McCabe said:

that SNAP reports were intended to be tools for NHS boards to use in the planning of services and that realistically the Executive could not manage the implementation of all SNAP reports without making a major change to the way in which the national health service in Scotland was run. “We are still convinced that service planning is best done locally.”
that to develop a national standard of care for MS would be a task for NHS Quality Improvement Scotland (an independent advisory body) and that to begin developing standards the Executive was funding a pilot managed care network (MCN) in Forth Valley led by a specialist nurse and that it was hoped future MCNs would be adopted by other NHS boards.
that there were a range of serious conditions for which people would like clinical standards, individual allocations of finance and specific responses and that “as we run a health service that is devolved to the local level, and as we encourage health boards to develop services to address local needs, that conflict becomes ever more difficult to resolve”.
In view of the above it was felt that local MSP’s, representatives of Health, Housing & Social Services and “service users” (us) might usefully get together in an informal setting to look at the services that are provided by statutory services and the MS Society and how we can all work together to improve services in North East Scotland for people with MS and their Carers.

Monday 21st June offers a rare opportunity to state your case to the people who make policy so come and join us and help make a difference.

Claim What’s Yours
Did you know that an estimated £660 million of Carers Allowance is not being claimed? That’s the figure uncovered by research undertaken by Carers UK last year. Many people who provide care and support to a family member or friend do not see themselves as a carer.

So if you know of anyone who does not recognise themselves under the label “carer” but is providing regular and substantial support for a loved one, do tell them about this allowance, which is currently £43.15 a week, but can be higher if someone provides care at night.

For more information on the Carers Allowance please contact:
Welfare Rights on 01224 621934 or
The Carers Centre 01224 646677

Are You the Weakest Link?
Monday afternoons at the Centre are now quiz afternoons. At the time of writing this article, we have been going for two weeks and I am very happy to say that on the second week our
attendance at the Social afternoons doubled. However, I was told by my boss to make the questions a lot easier because he was finding it too difficult. We play six or seven rounds on different subjects such as music, history, geography, TV from the past and present, sport and
local knowledge to mention a few. So if you would like to come along and put your general knowledge to the test – the more the merrier. I am determined to prove that Ian Leslie (Manager) is definitely the weakest link.

Jill Cruickshank,
Social Care Student on Placement

For a Relaxing Holiday…..
The MS Society (Aberdeen Branch) has a
Cottage at Ballater on Royal Deeside which sleeps 6 adults comfortably. It is situated in the town and is ideal for a short break. Rental prices are very reasonable, starting at £170 if you have MS, £180 for other disabled people, £185 for Support Members of the Society and £215 for the General Public. For further information and to book contact:
Maureen Dewar on 01224 322517
Maureen is also the contact person for the specially adapted static Caravan at Nairn on the sunny Moray Firth coast.

Pots for Norman
One person with MS who has long been associated with the Centre keeps us supplied with a selection of beautiful cuttings and viable seedlings of indoor and outdoor plants. These we sell on to people who visit the Centre. This means they not only bring a little brightness into their homes or gardens (the last donation was of “everlasting” sweet peas) but also help raise funds which go towards running costs.

Keen gardener Norman makes no charge for this labour of love carried out in his greenhouse but he has asked us if we could put out a call for some plastic pots that he can use. He is particularly looking for pots of 7” or 9” in diameter for more mature specimens.

If you have some plastic pots you’re no longer likely to use please either bring them to the Centre or give us a ring and we’ll try to arrange a collection. If you have some wooden tomato boxes he could use as trays (you know, the ones that are too good to throw away) these would also be particularly welcome.

Can You Help Us?
From time to time people visit the centre and forget to bring an item of equipment that they regularly use. Or maybe they set off from home feeling fine and later feel the need for some physical support. When this happens with a wheel chair or a walking frame we have one that they can use here in the Centre and even take home with them for that day ….but we’ve just realised we have no walking stick!

If anyone has a spare stick, please may we have it?

For People Going Abroad……
There is a global network of MS Societies. Wherever in the world you are going there is likely to be a national society with many committed professionals and volunteers working to maximise the health and quality of life of people with MS, their families and carers.

Multiple Sclerosis International Federation (MSIF) links the work of 41 member societies and their Directory gives contacts for each society. Download from www.msif.org or if you do not have access to the internet phone the Centre and we will supply you with contact details of the country you are thinking of visiting.

Leaps and Bounds
Our Mile of Copper Appeal is coming along very nicely thankyou.
To date we’ve travelled 419 feet 3 inches and raised £759.63p.
Thanks everyone. Keep it coming.