M.P.’S Hear About Progress on Cannabis Trials
In autumn last year the All Party Parliamentary Group for MS held its Annual General Meeting at Westminster, chaired by Gordon Prentice MP.
Dr. Kristina Staley, the MS Society’s Research Advisor, underlined to politicians how vital clinical trials are in determining the safety and eficacy of cannabis based therapies. She reported that the results of the Medical Research Council’s trials into muscle stiffness/spasms and incontinence are expected in summer 2003.
Pain Specialist, Dr. William Notcutt, from the James Paget Hospital, Great Yarmouth, gave an overview of the GW Pharmaceuticals trial of an under the tongue canaboids spray for pain relief. GW has since announced that it expects to seek a licence for its product this year.
N.I.C.E. (the National Institute of Clinical Excellence) will start to assess cannabis-based therapies this year. It is vital that on this occasion N.I.C.E. take fully into account the perspective of people with MS and take a wide view of the costs and benefits of treatments for these symptoms in order to prevent a repeat of the controversy that raged over their initial assessment of the beta interferons.
Many women with MS have claimed that they felt good during pregnancy and had no problems although they were prone to relapses after giving birth. Now a preliminary study in California suggests that a hormone produced during pregnancy can ease the early symptoms of MS.
A pill containing a synthetic form of oestriol reduces brain inflammation and boosts the immune system. Oestriol is a weak form of the hormone oetrogen. It is produced by the placenta during pregnancy and is used in some hormone replacement treatment. In trials among women with early stage MS the treatment reduced the size of inflammatory brain lesions and enhanced immune responses. When treatment ended, the lesions grew again.
Although the findings need to be confirmed by a bigger trial, researchers believe the hormone could be used for a range of auto-immune disorders.
Anticonvulsants for Nerve Pain
Many people with MS experience pain. There are two types of pain associated with MS, primary and secondary pain.
Primary pain is a direct result of MS damaging the nervous system and is known as neuropathic (nerve) pain. Types of primary pain include optic neuritis (pain with eye movement), spasms, and trigeminal neuralgia (facial pain). Secondary pain is caused by the “knock on” effects of MS and includes muscular pain.
Neuropathic pain responds poorly to standard drugs such as morphine and codeine although it does sometimes respond to anti depressants. Researchers have recently discovered a similarity between the physiological and biochemical mechanisms seen in epilepsy and in neuropathic pain. This has led to the introduction of anticonvulsants, used to reduce the frequency and severity of seizures in epilepsy, as a treatment for neuropathic pain. Drugs such as carbamazepine, phenytoin, gabapentin and lamotrigine have been studied in randomised controlled clinical trials for neuropathic pain and other newer anticonvulsants are currently under investigation.
£1,000.000 – Use it or Loose it
The MS Society still has just under one million pounds available under the Millenium Award Scheme but if it is not claimed by April this year it will all be lost. Under the terms of the Society’s agreement with the Millenium Commission they are not allowed to use the money for any other purpose. Some of the projects which have been undertaken are counselling training, creation of a local MS newsletter and website, carers’ support groups, cookery classes, publishing booklets/CD’s, quilting classes, photography training and exhibitions
The limits are your own imagination and that the project must be “not for profit” and help people with MS.
Awards of between £2000 and £5000 are available for people to get involved in activities that interest them. Groups of individuals can apply for up to £15,000. The grant will cover the costs of training, administration, publicity, volunteer expenses, equipment up to £500 and venue hire. To talk through your ideas for an award call the Awards team on 020 8438 0700.
Want to Save Some Fuel?
Alison Wisley from SCARF (Aberdeen & North East Energy Efficiency Centre in Aberdeen) gave a talk on how to keep your home warm and cosy and at the same time save energy and money.
SCARF in Aberdeen employ 40 people and covers up to Morayshire and down to Montrose. Advice can be given to anyone whether they own or rent property. The scheme is Government funded and the main aims of SCARF is to give advice on:- insulation and how to reduce fuel bills, how to understand your heating bills and on what charges the current 13 gas and electric companies are charging.
Grants are available for some people who are on certain benefits.
Some examples of insulation include attics, cavity walls, under floor, radiator foils for behind radiators, jackets for hot water tanks and draft proofing.
For further information please telephone Freephone 0800 512012 or call at 1 Cotton St. Aberdeen. Monday to Friday 10am – 3pm – no appointment necessary. Parking & disabled access is available.
Beating the Winter Blues
In January Dr. Ken Lawton came to the Centre to talk about the “Winter Blues” or Seasonal Affected Disorder (SAD)
Symptoms of SAD are depression, changes in sleeping and eating habits, “empty mood” and loss of pleasure in activities once enjoyed. Depression subsides in the Spring time and over Summer. Young people and women are at the highest risk of SAD, but it can affect anyone. About 25% of the population are thought to suffer from the milder form of SAD and about 5% suffer from the more severe form.
The causes of SAD are linked to a sleep-related hormone called Melatonin which is secreted by a gland in the brain. This hormone is believed to cause symptoms of depression There is an increase in production when the days are shorter and darker.
To help with milder symptoms, spending time out of doors during the day or arranging the home or workplace to receive more sunlight may be helpful. Regular exercise and a healthy diet may also help. For more severe symptoms make an appointment to see your G.P. who may recommend anti-depressants or a light treatment called phototherapy.
New Yoga Therapist at the Centre
After a two year search we have at last found a new Yoga Therapist to lead sessions at the Centre.
So a very warm welcome to Sheila Harper.
Sheila is a great believer in complementary therapies and in taking a holistic approach to life and is a member of the Scottish Yoga Teachers Association, the International Federation of Professional Aromatherapists and the British Acupuncture Council. However, at the Centre, she will be concentrating on the benefits Yoga can offer people with MS.
One enthusiast noted “Yoga is wonderful – it helps my balance and gives me a real sense of well-being. I do try to do exercises at home but it’s so much more fun being part of a group.”
Beginning Friday 28th February between 10.30 – 11.30a.m., Sheila will initially be with us for three months. If you’d like to give Yoga a try please give us a call. We need at least eight to ten people to come on a regular basis in order to keep the sessions running.
Do you have a sight impairment? Are you having difficulty reading books or watching your favourite videos?
Grampian Society for the Blind, have set up a fabulous new library and has a wide range of books in cassette format, large print books and videos. There is also a large selection of music CD’s and cassettes.
The cassettes and large print books come in all topics:- romance, thrillers, fact biographies, science fiction, comedy to name but a few. The selection must be one of the largest in Aberdeen.
There is also a wide variety of videos and a selection of “audio describe” videos For those of you who do not know what this is, it’s a normal video with a commentary at the quiet bits of film explaining what the people in the movie are doing and describing the background. This can be a great help in a musical show as the costumes are described, and if there is any dancing the commentator will tell you about it. This enhances your enjoyment of the film by giving a better understanding as to what is happening when your eyes cannot make out things clearly.
The HELLO Centre, (Home Entertainment Lending Library Opportunities), is open from 10 am – 2 pm Monday to Friday. The library is for personal callers, but a friend or carer can come along and get things for you. There is no postal service for the HELLO Centre. There is a one off joining fee of £5 and you can borrow 4 books, tapes or CD’s for a month. The videos can be taken out for 2 weeks. Please feel free to come along and there will be someone in the library to help you.
For further information please contact: Grampian Society for the Blind, John St. Aberdeen. Tel. 01224 625622
We have just received a series of new leaflets from the MS Society in London. These include:- Visual impairment in MS, Swallowing and speech difficulties, Relapsing remitting MS, Primary progressive MS, Secondary progressive MS, and finally Managing relapses – all of them very interesting and extremely informative.
Call into the Centre for a copy or phone
01224 692777 and we’ll gladly post them to you .
One Off Talks Suspended
SRC Programme Planners help identify “one off” events that will be of interest to people with MS and their families. Traditionally events have been held in the evening so that people with MS who have commitments during the day get an opportunity to come to the Centre and find out more about just what is available and what help can be offered.
Obviously some topics are of more interest than others to large numbers of people. When we first “booked” a neurologist 55 people turned up, and for a presentation by a researcher into cannabis 43 people attended, but only a few people have come to more recent talks. The people who do come say the talks are interesting and informative that they learn things that are relevant and useful to them so it’s not the quality of the speakers, most of whom are specialists in their field, that is the problem.
The majority of the Programme Planners have MS themselves and we looked at whether evening sessions were too tiring for people, especially if they suffered fatigue…and arranged some day time talks. But sometimes only three people attended.
We have a mailing list of 650 people with MS in the Grampian area, two thirds of whom live in Aberdeen or within fairly easy travelling distance but we can’t “pull” a round dozen. Some of the speakers have expressed their disappointment at the limited number of people who have attended.
This being the case the Programme Planning Group has decided to suspend further “one offs” for a period of approximately six months in the first instance but will keep the situation under review.
Of course it may well be that we’ve done such a good job of work in the past, bringing such diverse topics as fatigue, visual difficulties, continence and first aid to your attention, that many people do not find it necessary to come to listen to a specialist. Or it may be that written information on most topics is now fairly readily available or can be sourced through the Internet. If that’s the case and your information needs are being met we’re delighted. But if you value the opportunity to listen to and meet with professionals in their fields, let us know. We’re only a phone call away.
Shopmobility in Aberdeen
Shopmobility is a scheme which loans out powered/manual wheelchairs and scooters for travel around the centre of Aberdeen (photographs of these can be seen at the Stuart Resource Centre)
Shopmobility has been operational for nearly 10 years and has approximately 4,000 members. 1/3 of it’s members live outside the Aberdeen area.
Shopmobility is staffed by a full time Co-ordinator and a team of trained volunteers. The service is free although a financial contribution would be appreciated to help meet the running costs of this valuable service.
If people require a volunteer escort it is essential that Shopmobility has advance notice of this. When people borrow a piece of equipment they will be asked to sign a form for insurance purposes.
People requiring to use the service for Christmas shopping are advised to book well in advance, (i.e. months rather than weeks), as this is a very busy period of the year.
For further details please contact the Stuart Resource Centre on 01224 692777 or Shopmobility on 01224 63009.
The Royal Association for Disability and Rehabilitation (RADAR) gives information and advice for disabled people in the UK. They have information on Civil Rights, Employment, Housing and Benefits. Radar’s vision is of a society “where human difference is routinely anticipated, expertly accommodated and positively celebrated”.
On a more prosaic note, some years ago, they initiated one of the most practically useful schemes we have encountered – the RADAR key. RADAR keys allow people with disabilities access to disabled toilets throughout the country at whatever time of the day or night.
RADAR publish a book listing toilets throughout the UK, cost £5.00, (the Centre has a copy) and keys can be obtained locally from the Department of Environmental Health, 4th floor, St. Nicholas House, Aberdeen. Tel. 01224 523440 on showing some proof of physical disability,
e.g. your Blue Badge or your Disability Living Allowance Book, and paying £3.50p
RADAR’s address is 12 City Forum, 250 City Road, London EC1V 8AF. Tel. 0170 250 3222 or visit their website at www.radar.org.uk
Do You Want a Home Visit?
For one reason or another you may not be able to get into the Stuart Resource Centre to meet with other people who have MS or have access to staff who can help you with problems. If that is so, we have appointed someone who is prepared to visit you at home. He is Max Paterson, a retired person who has had a lifetime of experience meeting people in their homes and offering just a friendly word or, if you want, to share a problem with you.
It may be just help filling in a form or how to get in touch with another agency such as the Social Work Department or the Benefits Office. It may be that you have some enquiry about MS and we have books and leaflets here that would be helpful.
Max is prepared to visit you whether the matter is large or small. He’ll come just for a cup of tea if you’d just like some company.
We can only offer this service by arrangement through this office. So phone us at the Stuart Resource Centre on 01224 692777 in the first instance. Max is properly accredited by the Multiple Sclerosis Society as a visitor and he will show you his authorisation before he enters your home.