Help with Pain
Neuropathic pain can profoundly affect a persons mood, personality and social relationships. People with persistent pain typically experience depression, sleep disturbance, fatigue and decreased physical functioning.
An audit of 50 people with MS who were given the pain relieving drug “gabapentin” was recently carried out by MS nurses in North Staffordshire.
The study found that gabapentin
was found to be well tolerated by most patients
had few side effects
was effective in controlling pain in 86% of patients
helped with spasms in 42% of patients
relieved stiffness in 33% of patients
Gabapentin was reported to be effective in controlling hypersensitivity and paraesthesia (e.g. “tingling” or “pins & needles”) shooting, stabbing, burning, numbness, aching and cramp type pain in MS. The effect of gabapentin was found to be more beneficial than previously tried medications.
Immune system : Complex system of organs in the body which produce lymphocytes, macrophages and antibodies to destroy or neutralise various micro-organisms or harmful substances.
T-cells: A type of lymphocyte produced in the thymus and triggered by antigens. In MS some T cells behave abnormally by causing the attack on the myelin sheath.
A vaccine for MS is about to undergo further trials in the United States. Results from the Phase 1 study involving 4 people indicate it may well halt the disease in its tracks.
A team led by Professor Weiner of the Keck School of Medicine in California is currently recruiting people for a 3 year trial in which 40 people with secondary progressive MS will receive the active vaccine and 40 people will receive a placebo.
People participating in the trial will have an MRI scan to measure the lesions in their brains and will then have white blood cells removed from their bodies. These cells will be exposed to myelin from a cow’s brain which should trigger the characteristic MS response from the autoimmune T-cells. The T-cells will then be exposed to radiation, killing them and at the same time altering them so that when they are reintroduced to the body they will be seen as “foreign”.
The reintroduction – or vaccination – should trigger the immune system to create antibodies. It is hoped to prevent the progression of the disease by making the immune systems “normal” again leaving future repair of the nervous system an easier task.
“We vaccinate them against their own bad lymphocytes. After that they should be immune to the cells they produce that attack their white matter at any time in the future because they have a memory for the bad T-cells. We’re giving them weapons to kill their self-immune responses. In the vaccinated patients the good T-cells are interacting with the bad T-cells and killing them” said Professor Weiner.
Patients will receive vaccinations every month for three months followed by vaccinations every three months for two years. Year three of the study will be a follow up to see whether the effects of the vaccination persist over time. The vaccine will be deemed successful if it can halt the progression of existing lesions and the appearance of new MS lesions as measured by MRI. The team will also look at any changes in neurologic function and will monitor side effects.
Although the vaccine is unlikely to rid people of their current MS symptoms it is hoped it will allow the immune system to take control of the disease so that that further treatment will be unnecessary ever again.
We will keep you informed of any progress.
Scottish research findings
Psychosocial aspects of caring: Social Support and Social Networks of carers of people with MS
On the 22nd of March the results of the above research project on Social Support and carers of people with MS, were presented at the Stuart Resource Centre in Aberdeen.
Funded by the MS Society, the research was carried out over two years by Rosemary Chesson (Reader in Health Services Research) and since 2001 also by Clara Garcia (Research Assistant) at the Health Services Research Group at The Robert Gordon University .
Sixty carers participated in the research living in Aberdeen and Grampian, Argyll & Clyde, Ayrshire & Arran, Edinburgh & Lothians and Orkney. Two thirds of the carers were men and four out of five carers were caring for a spouse or partner.
More than half of the carers lived in rural areas and half of them were not in paid employment. Seventy per cent of the carers reported moderate to high levels of anxiety and depression. More than half of the carers received no support, less than 25% of them received occasionally some support and 25% received regular support from family or friends or from health and social services.
The increasing caring responsibilities made it very difficult for carers to find time and space for themselves. Overall social isolation was a common problem. The study indicates that carers are lacking support and that they are at high risk of being socially excluded. A final report will be submitted to the MS Society at the end of May.
We thank everyone who helped us with this research and especially the carers.
Health Services Research Group
Faculty of Health and Social Care
The Robert Gordon University
Queen’s Cross, Aberdeen, AB15 4PH.
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Carers centre goes global
The Carers Centre in Belmont Street, Aberdeen, launched a new website at the end of last year. For carers requiring information please telephone the Carers Centre, 24-28 Belmont St., Aberdeen. Tel no. 622428.
Website – www.care-aberdeen.org.uk
A drug to combat fatigue?
90% of people with MS experience fatigue with as many as two thirds experiencing fatigue on a daily basis. The drug “modafinil” is usually used to treat narcolepsy, a sleep disorder linked to excessive daytime sleepiness and disturbed sleep at night, but it may also help beat the fatigue associated with MS.
Researchers in the United States compared how people with MS felt after taking two different doses of the drug with those taking a placebo medication. They found it caused a “highly significant” reduction in the tiredness that is a common symptom of MS and that it had no worse side effects than those who received the placebo.
Researchers say this is the first time a drug has demonstrated this degree of improvement in treating MS related fatigue in a clinical trial. Although more research is needed to provide detailed information about the optimum dosage and length of treatment it was hoped more neurologists would start using the drug.
Professor Alan Thompson of the Institute of Neurology said “This is a welcome addition to the armoury, but what we do know of the treatment is that it suits some people better than others. Anything with the ability to alleviate that symptom is very much to be welcomed”.
Beating fatigue the natural way
Many people shy away from taking drugs unless absolutely necessary and prefer to find other ways of managing their symptoms. There are reported to be several aspects of nutrition that can help with fatigue and give more energy. Some of these are:
Keep blood sugar levels stable
Cut down on stimulants e.g. tea, chocolate, cola, cigarettes, alcohol and refined sugar
Eat complex carbohydrates and some protein at each meal
Eat more raw food e.g. carrot, broccoli etc. and fresh fruit
Drink enough water – at least 2 litres of water a day
Get essential fats from oily fish, nuts & seeds
Lack of vitamins, minerals or trace elements can contribute to fatigue. Get your GP to arrange a blood test.
Monitor for food allergies or food sensitivities.
For a wide range of information on diet contact the Centre.
Insurance and MS
In order to try to get a better deal for people with MS the MS Society has teamed up with leading insurance broker Heath Lambert in a ground-breaking new venture – MS Society Insurance Services.
For people living with multiple sclerosis, finding meaningful insurance cover is often difficult if not impossible but as a result of discussions with insurers, there are a number of products now available specially designed for those living with MS including:
Particularly exciting is the breakthrough in Life Assurance. A new approach by insurers means many people with MS will now be able to obtain Life Assurance for the first time, while many others will be able to obtain it at a more competitive price than has been possible in the past.
The MS Society admits the new service will not always be able to provide cover for everyone as individual circumstances differ but the current situation should greatly improve.
The new products and services available through MS Society Insurance Services are not just for people with MS – their carers and supporters can also take advantage of competitive rates with the Society receiving a donation for every policy sold. Nor is it just for members of the MS Society. Anyone can call on freephone 0800 7833 157 for further information or for a quote.
Respite services and MS – Could you spare some time with us?
Currently, we are carrying out research on Respite services (short breaks) and MS. We would like to invite some people with MS and some carers to take part. We would like to investigate the kind of respite available and the effects of it on those who receive it.
This is a joint project between The Robert Gordon University and Shared Care Scotland, funded by the Community Fund. If you are willing to participate, please contact us as: Tel: 01224 263042 and ask for Clara Garcia or e-mail us at: email@example.com
The Carers Centre is hoping to organise training sessions for carers on the following:-
Moving and Handling
How benefits are affected by hospital stays
Coping with stress
Coping with guilt
Dealing with Challenging Behaviours
What is Dementia
The Carers Centre now also has the services of a trained “Lifecoach”. “Lifecoaching is not therapy and not counselling but it can be a practical enjoyable experience which can launch you in a new direction.”
If you are interested in any of the above please contact Lesley Gray on 01224 646677 between 10am to 4pm Monday through Friday or e-mail firstname.lastname@example.org
Aberdeen City Council in partnership with the Carers Centre are piloting a Care Transfer Scheme which it is hoped will assist carers or a person receiving care to be moved closer together. The pilot will be for 50 cases or for a year, whichever is the soonest.
The scheme will operate along the same lines as the existing Elderly Transfer Scheme, where the person receiving care is assessed and points awarded depending on the need of the individual.
If you wish to enquire about the scheme contact Garry Brown at the Housing Department on 01224 – 523817
They’re reviewing the situation
An audit of houses suitable for a person with a disability is also presently being carried out by the Council’s Housing Department to ensure each adapted property is kept track of and, should a property with adaptations become vacant, it be allocated to an applicant requiring the facilities. The information obtained from the audit will be provided to the Disabled Persons Housing Service.
The Housing Department is due to send out letters to all tenants to check details of the properties they have on record are correct. If you live in an adapted property and don’t receive a letter in the next few weeks perhaps you could contact Gary Brown 523817 to let him know.
It’s the place to be
Have you ever fancied a weekend away and doing something different? Well now’s your chance. Join the “in crowd” for a fun filled weekend and a chance to make new friends at Holmhill M.S. Holiday Centre in Grantown-on Spey on Friday 30th August to Monday 2nd September.
Here are just a few of the activities on offer:-
Clay pigeon shooting, fishing, water sports, enjoy a sail down Loch Ness, whisky tasting, BBQ (weather permitting) or just enjoy a day round the shops.
After a full day out enjoy our good home cooking and relax with a drink from our well stocked bar or if you still need more excitement enter the pub quiz or try your hand in the Karioke.
So what are you waiting for? Give May Duncan a call on 01479-873877 for more details and a booking form.
Three excellent new books are now available at the Centre for borrowing: –
“Symptom management” by Randal Schapiro
“Multiple Sclerosis — a guide for families” by Roslind Kalb
“Meeting the challenge of Progressive Multiple Sclerosis” by Patricia Coyle and June Halper.
If you’d like to borrow any of these just get in touch with the staff on 692777.
Book & Tape amnesty
You’ve done your Spring Cleaning (or hopefully had someone else do it for you). Did you come across one or more of our books or tapes?
There are a number of books and tapes on Multiple Sclerosis and related topics that have not been returned to our “library” over the last year. One in particular we would like back is “101 Ways to Relaxation” …it has been out for well over six months now.
Please, please, if you have any, bring these books and tapes back so that other people can gain the benefit of them just as you did.
Ahoy me mateys
Graham Sutherland from the Inverurie branch and myself, Anne McRae, from the Aberdeen branch, are joining forces and going off to the high seas.
In August we are going on the M.S. Multiple Challenge, which is a boat that we go on for 6 days. We leave Oban and go round the West coast of Scotland and return to Oban again. Neither of us have been sailing before but we can’t wait to get going.
The main aim of the trip is to raise money for research into MS. So if you could help to make this trip worthwhile for Graham and I, we would be most grateful.
Ian Leslie at the Stuart Resource Centre has sponsorship forms for anyone who wants to sponsor us. All contributions will certainly be welcome. Well must go and get the sea sick pills packed!!!
Aberdeen Accessible Transport Group is user-led and exists to promote accessible, affordable transport services for all disabled people through consultation and information sharing.
If you have concerns regarding Taxis, Buses or general transport issues, they will be handled in confidence by the group.
To have your say, or for information, contact:
Aberdeen Action on Disability Tel.O1224 641355
Save those stamps
The Stuart Resource Centre has always collected used stamps for a local charity, the Cyrenians, who used to convert them into cash – but they’ve given up that method of raising funds.
However, even better. We’ve discovered someone who collects used stamps on behalf of the MS Society and who last year raised £400 from contributions received. So we’ve decided to send all our used stamps to him and, in future, collect on behalf of MS Society funds. If you’d like to help, send or take your used stamps to the Centre and we’ll add yours to ours and send off a bumper batch on a regular basis.