September, October & November 2005

Consultation Response

To date we have had a very poor response to the 4 consultation workshops to be held throughout Grampian for people with MS.

To remind folks again, back in June 2004 the Stuart Resource Centre, held a meeting with 4 local MSP’s and representatives from the Social Work Depts. It was agreed that a working party be established to look at the services provided for people with MS throughout the Grampian area. The group, which now includes representatives from NHS Grampian, have met monthly since September last year and the work is nearly completed.

Now we need YOUR input!
The workshops are open to people with MS and/or carers.
This is YOUR chance to have your say, we hope you will be able to come along.

Please complete the enclosed form and return it to the Stuart Resource Centre as soon as possible.

If you are unable to come along feel free to put your comments in writing or alternately e-mail your views to the centre, our e-mail address is contact@ms-src.demon.co.uk

Wristbands – Get Yours Now

The SRC now has a long awaited supply of orange and black “Fighting Multiple Sclerosis” wristbands in stock priced at £2 each. For more information or to see them, visit the Fighting MS Website

MS Could be Linked to Viral Infection

A new study by Scottish researchers shows evidence that the neurological illness multiple sclerosis (MS) could be linked to a viral infection. Clusters of MS have been noted in certain areas, including the Faroe Islands, Orkney and Shetland Islands.

Researchers at Dundee University used a comprehensive register which records MS cases in Tayside over the last 30 years to examine whether similar outbreaks would appear in a region where there was prior knowledge of high incidences of the disease.

The study found peaks of MS occurring in both certain years and in geographical locations, which scientists claim support the idea that that a virus is involved in the development of MS.

Co-author Dr. Peter Donnan, a senior lecturer in medical statistics at the university said “ We were interested in whether there was any clustering of cases in time and location.”

“Nobody really knows what causes MS. It is a multifactorial condition and there are debates about the role of genetic susceptibility and certain childhood viral infection in those who are susceptible and with unknown environmental factors. In some years there may be epidemics of viral infections and in some years you get less, so what we are looking to see is whether there are peaks in certain years and peaks in certain locations”

Researchers found that there was a significant increase in cases between 1982 and 1995, with an annual incidence rate of 8.2 per 100,000 population, compared to an overall average increase of 7.2 per 100,000. During the 30 years studied, cases also appeared to peak every two to three years.

Dr. Peter Donan said that further investigation, would be needed to help explain why, for example, the incidence of MS appears to peak every 3 years.

This study was possible because Dundee has comprehensive records of MS cases in the area. The MS Society is hoping to set up a national data base to record MS cases across Scotland.

Remyelination – Research

Following media reports of a person with MS receiving a stem cell treatment in Holland and showing “miraculous” results, the MS Society has issued the following statement:

“The potential for stem cell therapy to repair the damage caused in MS is well recognised….. Research into stem cells and MS is, however, still at an early stage. We cannot comment on the case of the lady who has been reported as receiving a form of stem cell treatment in Holland…..In view of possible risks we believe that great caution is needed when considering any unorthodox treatment which has not been subjected to rigorous trials and review, as is the case with stem call therapy in MS.”

A summary of a recent report on stem cell treatment published in Multiple Sclerosis, 2005. Vol 11, pages 367 – 371 is below.

A very small percentage of people with MS have an extremely “aggressive” form characterised by rapid accumulation of disability from diagnosis and in some cases frequent and highly 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 call therapy. All had previously not responded to standard therapies and had a life-threatening prognosis. Stem cells (unspecialised cells which have the capacity to develop into different cell types, including immune cells) were collected from the bone marrow of each of the participants.

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.

Stem cell therapy showed significant improvements in disability in what appears to be a lasting effect. The rarity of this aggressive type of MS means that controlled clinical trials are not possible. However, the authors highlight that in very aggressive MS, with a life threatening prognosis, where conventional therapies have failed, stem cell therapy is one possibility, despite the potential side effects.

MS Specialist Nurse at ARI

At present there are two MS specialist nurses, which make up a full time post and a part time MS liaison nurse. Zandra Taylor is off sick at the moment and I (Rose Johnston) am working four days per week Val Leslie is the MS liaison nurse and is also working four days per week. We do not work weekends and normally work during the hours of 8 a.m. – 4 p.m.

The current protocol for accessing the MS nurse service is for you to be / have been referred by your consultant Neurologist. If your consultant has referred you to us we would contact you by letter informing you of our role as MS nurses. Our role is to provide support, information and advice to people with relapsing / remitting MS.

We also co-ordinate the Disease modifying therapies, this includes providing information, ensuring the prescriptions are issued, signed by your consultant and sent to the delivery company. We also provide training for self-injecting of the Disease modifying therapies and also follow up care and advice.

We are based at Aberdeen Royal Infirmary and mainly see patients either at clinics for review or if people are having an acute flare up we will see them on a Friday morning but this may change to a Wednesday in the near future.

We do not normally do home visits but if a patient who has relapsing remitting MS cannot make it to the hospital then we may visit at home.

If as part of our nursing assessment we find that the patient requires further input we may refer the patient on to other members of the multidisciplinary for example, physiotherapist, occupational therapist or speech therapist.

We also see newly diagnosed patients initially on a one to one basis and also run newly diagnosed groups.

Rose Johnston

Mile of Copper

The fund currently stands at £1657.29 which means we have travelled 920 feet, that’s just 4,360 feet to go. Keep it coming.

Coping With Tremor

A tremor can be described as a trembling or shaking movement that you can not voluntarily control. It may be experienced as small, shaking movements (fine tremor) or as larger movements (gross tremor). While it is usually a rythmic back and forth shaking it can also be irregular and unpredictable.

Perhaps as many as three quarters of people with MS experience tremor. For some people it may be very mild and almost unnoticable, for others it may affect handwriting or cause problems with eating and getting dressed. At its most severe people may make unpredictable movements like a sudden flailing of the arm or leg. Tremor typically develops between 5 and 15 years after the first symptoms of MS.

People are most likely to have tremor in their hand or arm but it can also affect the legs, trunk or head or cause problems with speech or co-ordinating eye movements. For some people, apart from being exhausting, tremor can also cause feelings of acute embarrassment and self-consciousness.
For many people, tremor occurs when they want to do something or reach for something. This is called intention tremor. (One tip we got from an OT to try that sometimes works with intention tremor is to avoid looking directly at the object you wish to pick up but instead glance at it out of the side of your eye. Why it works we’ve no idea – but it seems to in many cases.) Tremor can also be postural. This happens when a person is sitting or standing, with their muscles holding a part of their body against the forces of gravity. In MS, tremor is often a combination of the two and neither of these types of tremor is present when a person is lying down or asleep i.e. when the muscles are completely at rest.

Having to live with tremor is an on-going process. You may need to try different approaches at different times as your needs change. Many people find their own solutions e.g. using a “good” arm to steady a shaky one or propping their elbow on the table in order to eat. Physiotherapy and occupational therapy may help by reducing its disabling effects.

There are no drugs specifically for treating MS tremor although some people have found
drugs licensed for treating other conditions can be beneficial. With any drug there may be some sort of side effect.

For some people, even a small decrease in tremor for a short time may make a significant difference to what they are able to do.

One recent trial involving ”deep” and “moderate” cooling may offer hope of short term relief. 29 people with moderate MS and intention tremor were involved in cooling of the forearm in the form of a wrap (similar to a blood pressure cuff ) containing cooling liquid for 15 minutes. The cooling was well tolerated by the participants with no side effects. The study indicated that cooling of limbs can reduce intention tremor for short periods, possibly as a result of reduced muscle activity. It was suggested that cooling the arms before undertaking daily activities such as writing or eating may be helpful.

For further information on tremor and treatments check out MS Essentials No 04. Copies are available from the Centre.

New Essentials

There are three new MS Essentials booklets here at the Centre. Latest Essentials are:

No. 03 “MS and Insurance”
No 08 “Getting the Best from Social Services”
No 09 “Benefits and MS“.

The Social Services booklet deals with England & Wales only. The MS Society (Scotland) is currently working to produce one that deals specifically with services available in Scotland as these are slightly different. For copies pop in or give us a call on 692777.

We also have a number of copies of the recently published edition of “Coping with MS” available for loan here from the Centre.

Author Cynthia Benz (an old friend of the SRC) has in collaboration with Professor Richard Reynolds revised and updated this excellent book. It approaches all aspects of MS in a straightforward, informative and non-frightening manner. As those of you who have read her earlier editions will know this is “essential” reading for people who have been diagnosed with MS and their families.

Advovacy Serveice – Aberdeen & North East

Do you sometimes find it hard to say what you mean when talking to health or social work staff? Do you sometimes find it difficult to take in everything they say to you?

Advocacy is about helping you to try to have more control when dealing with health or social care services.

If you are 16 or over, an advocate can help you speak up for what you want and make sure your views are heard, can help you work out what choices you have and explore options with you. An advocate will be guided by you and can help in different ways including writing letters for you, giving you information, helping you make informed choices and going to meetings with you.

Even with an advocate things may not always go your way but an advocate can make sure you have had your say, your views have been heard and you feel you have been listened to.

For more information on this free, independent and confidential service contact:-
For Aberdeen – Tel. 01224 332314, e-mail asa@advocacy.org.uk

For North, South & Central Aberdeenshire – Tel. 01467 651605, e-mail advocacyne@btconnect.com

Volunteers – We Need You

We need volunteers, be it members, family or friends, to keep the Aberdeen Branch of the MS Society and the Stuart Resource Centre running to the standard you are used to.

We need drivers to take people on outings and to socials etc. We need fund raisers to help to raise funds for the Branch and to keep the Stuart Resource Centre going. (Remember the Stuart Resource Centre is funded solely by the Aberdeen Branch and does not get funding from other sources.) Welfare is also extremely important so anyone who can spare a few hours to visit members at home or in hospital would be most welcome. The committee need your support in recruiting volunteers.

Without volunteers the Branch begins to crumble so please give whatever help you can and encourage other to become volunteers.

If you or someone you know can spare a few hours of your time, even once a month, please get in contact initially with:

For potential drivers – Ian Wells
For other volunteering opportunities – Ian Leslie at the SRC on 01224 692777

Nora Campbell

The Fun of Fundraising

Congratulations to: Ian and Sue Morrison who each made a 10,000ft parachute jump for charity (to view photographs, click Iain or Sue), Paul McIntosh whose legs are pumping even now on a sponsored 500 mile static cycle run and Anne Stewart for a successful raffle.

Care Data

If you require local health and care information for the North East of Scotland and cannot find it, or you have additional queries Grampian CareData will be happy to assist you.

Main topics include:

Education & Training, Employment, Finance & Legal, Health, Housing & Residential Accomodation, Leisure & Sport, Local Authorities & Public Services, Social Services & Help With Daily Living, Transport & Travel, Volounteers

Freephone 0800 136 225
E-mail: caredata@aberdeenshire.gov.uk
Website: www.grampiancaredata.gov.uk