Cannabis has been in the news again recently with the government statement that it’s classification is to be reassigned from being a Class B drug (in the same category as amphetamines and some strong painkillers) to a Class C drug (in the same category as anti-depressants and anabolic steroids)
While this is interesting, we are more concerned with the progress of the Cannabis in MS trials that are to be carried out at 38 centres between Portsmouth and Dundee. After just a few months of national recruitment, the CAMS project has recruited over 20% of the 660 patients needed for the trial.
Cannabis has been reported to have important therapeutic benefits that successfully treat some of the symptoms of MS. These include the relief of pain, relief of spasm and spasticity, improved eyesight, restoration of feeling to nerve endings, improvement of bladder and bowel control and an aid to relaxing. Drawbacks can be feelings of anxiety and panic if not used to it, increased risk of psychotic symptoms, reduction in concentration and impairment of memory, transient muscular weakness, and, if smoked, increased risk of smoking related illnesses.
Research such as the CAMS project which is concentrating on people with “significant spasticity” should assist in giving clear scientific evidence as to whether the costs outweigh the benefits or vice versa. For more information on the trial, visit their website at www.cannabis-trial.plymouth.ac.uk or ring 0800 0153430.
(The Stuart Resource Centre has a computer specially set aside for clients use and staff will be happy to assist you with any search you may wish to make.)
If you used to be an avid reader but now find difficulty reading or holding books you may be interested in subscribing to Listening Books. This is a library of around 2,000 audio books with more being added all the time. Use them as a bedtime story, snuggled under the duvet or as a means to broaden your literary education.
Listening Books provides a postal audio book library service to anyone who suffers from an illness or disability which makes it awkward to read in the usual way. The service costs £50 per year (less than one pound per week) and offers free postal delivery to your door. The next book is despatched to you on the same day the last one was returned and they can even provide for no extra charge specially adapted tape players for people who have difficulties using an ordinary machine.
For further information contact :
Listening Books, 12 Lant Street, London, SE1 1QH. Tel. 020 7407 9417, e-mail: email@example.com or view their website on: www.listening-books.org.uk
Do you have a funny story to tell?
The MS Society (London) has received funding from the Millenium Commission to fund Millenium Awards. The awards aim to give people affected by MS the opportunity to realise a project that will be of personal and community benefit. Awards range from £2,000 – £5,000.
After racking our brains, we thought about asking people to send the Stuart Resource Centre a short, funny story about something that has happened to them in their lives. The stories could be recorded on a tape recorder, whether at home or here at the Centre if people preferred this, or submitted in writing to the Centre.
We would then gather the stories together and ask a publisher to produce a book. The book could not be sold (as monies cannot be made from the project) but it would be given to individual people who submitted their stories and to others who might appreciate a copy to cheer them up.
This is just one idea we came up with for the Millenium Awards Scheme. There are five “Headline Themes” under which a project must fall. These are:- Reaching Out, Skill Sharing, Environment, Community Development and Raising the Profile of MS. If you are 16 or over, have MS or are the relative, friend or colleague of someone with MS and have a burning ambition to pursue something locally that would be of both personal and community benefit, give us a call and we’ll send on details of the scheme to you.
Parking at Foresterhill
Those of you who have had difficulties parking at Aberdeen Royal Infirmary will be pleased to learn that there is a Strategy Group that meets regularly to discuss the problems of access and parking at the hospital. Grampian Local Health Council will be assisting the group with some detailed work to “gather the views of patients and visitors to the site and ensure the public perspective is fed into the review process” – so, if approached, don’t be reticent with your views.
Leonard Cheshire WORKABILITY aims to break down barriers that can exist for disabled people in the search for work and to provide disabled people with the skills and support needed to gain access to training and employment. The project will provide up to 10,000 disabled adults with computer equipment in their own homes, training them in new skills and providing them with help in the job search process.
Participants will become registered college students studying at a virtual college site on the Internet or with other locally based training organisations. Training in basic information technology applications is offered leading to nationally accredited qualifications.
For further information contact:
Leonard Cheshire WORKABILITY Scotland, 161 Lower Granton Road, Edinburgh, EH5 1EY. Tel. 0131 538 5544.
MS Tissue Bank
The national UK Multiple Sclerosis Tissue Bank, co-ordinates the collection of donated tissue and distributes samples to scientists conducting research into the causes and treatment of MS
While other techniques can be used to study MS – such as experimental animal models, MRI and cell culture, they are not an adequate substitute for studying samples of tissue that have actually been damaged by MS. Since it was set up in 1998, 1700 people have so far registered as tissue donors. To date, 84 people with MS and 14 people without MS donated tissues, which are being used in a total of 27 different research projects around the world. A single donation can yield 200 different samples that can be supplied to many different research projects..
“I’ve signed up for it. It’ll not do me any good but it might help other people and it makes me feel I can do something to help” says someone who comes to the Stuart Resource Centre.
If you wish to learn more about the Tissue Bank contact either the UK MSTissue Bank at Charing Cross Hospital, Tel. 0208 846 7324, e-mail firstname.lastname@example.org or call the MS Society Helpline on 0808 800 8000
It’s not something we talk about
There’s no good time to talk about death but perhaps the end of one year and beginning of a new millenium seems as good a time as any. Death is the only sure thing we know is going to happen to all of us at one time or another.
This being so, it makes sense to make as many arrangements as possible well in advance and to let your wishes be known to friends and family. These could include things like putting your financial affairs in order, making a will, setting up a trust fund, buying a burial plot, pre-paying funeral costs or arranging to donate your body, organs or tissue to medical research. If these things are taken care of by you then, when the time comes, your loved ones will be spared a lot of soul searching and anxiety at a time when they are already suffering from severe shock, anger, grief and disbelief. Far from being morbid, to do this is an act of generosity and kindness. And once the practical arrangements have been made there’s no need to dwell on them, instead you can relax and look forward to making the most of the rest of your life.
If you’d like to talk over any feelings you have on the subject, in confidence, a member of staff will be available to support you, or you might like to contact our counsellor.
Artlink Aberdeen is a new organisation which is being set up to help people with disabilities and impairments. The idea of Artlink is to provide a service which makes it easier for people to get out and about. This can be to places like cinemas and theatres, galleries and museums, concerts and other arts and musical events. The aim is to arrange outings according to people’s individual needs and circumstances. A survey to establish demand has already been carried out. An Artlink scheme has been operating in Edinburgh & Lothians since 1984, co-ordinates in excess of 1,000 outings each year and is supported by over 100 volunteers. All going well, an equally successful scheme should be up and running by next year. Watch this space.
Danger in Delay
Recent research demonstrated that people with relapsing-remitting MS treated with beta interferon 1a will develop less permanent disability.
The PRISMS (Prevention of Relapses and Disability by Interferon Beta 1a Subcutaneously in Multiple Sclerosis) study was originally set up to compare people treated with beta interferon against a control group that received a placebo. This study showed the drug could reduce relapses by up to a third.
After two years, the control group began treatment with beta interferon. A further two years on, the PRISMS-4 study shows that people who received beta interferon for the entire four years have significantly less impairment and disability than those who originally received the placebo. The results show that delaying MS treatment, even for only two years, can have, to date, irreversible consequences.
On 1st November the National Institute of Clinical Excellence made a final determination that beta interferon should not be made available to people with MS. NICE has determined that the drugs were too expensive for the “limited” benefits they bring.
At the same time however a “leak” to the press indicated that the Department of Health is considering a proposal that will make beta interferon more widely available, despite the NICE decision. The DoH says “We believe it is possible to come to a constructive arrangement.”
It appears that beta interferon will be made more widely available over a designated period and that during this time it’s effectiveness will be monitored carefully. It is not yet known how many prescriptions are likely to be issued or when or for how long the scheme would last but it seems likely it would start within a year.
While this is good news it has yet to be confirmed – so please don’t ease up on letting your local MSP know how important such a move is to the many people with MS that the drug could help.
There has been speculation throughout that it is the cost, not the effiveness of the drug, that has been the problem all along and it is likely a deal will be sought with the makers in an attempt to lower the cost of beta interferon to the health service.
Spare parts from skin cells
Scientists have made a breakthrough which could enable them to grow spare parts from
If successful, it could end the need to make stem cells from embryos, a practice which has caused ethical controversy around the world. This could lead to revolutionary new treatment for MS as well as other neurological diseases such as Alzheimer’s and Parkinson’s.
A Canadian research team at McGill University have managed to take stem cells from the skin of an adult mouse and develop them into mice brain cells. The hope is that if it works in mice it could work in man. The team leader stated, “This raises the possibility of treating patients with stem cells from their own body. The idea that you could find a cell in skin that’s capable of making brain cells was so radical that it was almost beyond belief.”
…and from Bone Marrow
Researchers are also closer to being able to reverse brain damage in patients with diseases like MS and Alzheimer’s by implanting cells taken from the patient’s bone marrow. It was reported that it was hoped that trials on human patients could begin within the next two or three years. This means that the controversy over the extraction of stem cells from human embryos might soon become irrelevant because it was becoming apparent that bone marrow cells that could be taken from the patients own body are likely to perform just as well and there would be no risk of rejection by the body’s immune system.
Being aware that my longstanding bladder problems were unlikely to just “go away” or improve on their own, I was initially very interested in a talk on continence which was given by Wilma Nicholson in the Stuart Centre on 12th October. However, although interested, I was also a bit anxious and embarrassed at the thought of airing my worries in the presence of a group of people, some of whom I might never have met before. Well, I need not have worried. Everyone attending the talk said they had felt the same and there’s nothing like a bit of sharing for breaking the ice!
The other thing which was very helpful in dispelling any embarrassment was the attitude and approach of Wilma herself. Her very down-to-earth, matter-of-fact approach made everyone feel instantly at ease. Although she was very sympathetic and sensitive to all of our questions, she was also factually so completely on the ball that she seemed to know exactly what everyone meant.before the topic was even broached in some instances!
Thanks to some information about medication that Wilma gave me, I have already approached my GP and had my drugs changed. Without the information I’m not sure that I would have done that so confidently.
The leaflets about various products which were available at the end of the talk, have certainly made me realise that there is much more help out there than I had ever been aware of.
As a result of the way everyone attending this talk felt so positive about it, I understand that there are to be individual sessions with a continence adviser to be set up some time in the next few months and I would thoroughly recommend anyone who feels interested to have no hesitation about attending one of these. After all, nothing ventured, nothing gained! – Anne S.
On the morning of 10th October, the Centre was treated to a well-informed talk by Martin Julich from the Rosemount Centre. About 15 of us were given explanatory sheets to help us on our journey of discovery. A bewildering number of therapies were explained and discussed e.g. Acupuncture, Aromatherapy, Massage, Art Psychotherapy, Counselling, Homeopathy, Indian Head Massage, Reflexology, Reiki, Shiatsu, Yoga, even – wait or it – Colonic Hydrotherapy -some laughter there!
All therapies are about Healing – mind, body or spirit. Some focus on all three. All the therapists at the Rosemount Centre are fully qualified in their field. The importance of “doing your homework” when considering any new treatment was stressed. Talk to your GP, neurologist, physiotherapist first, and find a reputable therapist.
I believe everyone enjoyed the morning as much as I did. Alma D.
People who are interested in what Martin had to say but who were not able to attend the talk may wish to borrow the audio tape we recorded of his presentation or request a copy of the comprehensive handout on a variety of complementary therapies that he gave us. Call us on 692777.
Your Driving Licence states quite clearly under the heading Changes to your Health – “If you have a medical condition which has become worse since this licence was issued or you develop any new medical condition, you must write and inform the Drivers Medical Group, DVLA, Swansea, SA99 1TU, of the nature of your condition, as it may affect your fitness to drive.
Failure to do so is a criminal offence punishable by a fine of up to £1,000.”
This being the case, people with MS, especially those who have experienced visual problems, are obliged to inform the DVLA of their condition.
Two questions frequently asked by disabled people who want to drive are
‘Am I safe to drive?’ and ‘How can a car be adapted to enable me to drive?’
The Edinburgh Driving Assessment Service (EDAS) was established in 1983, to answer informal enquiries and undertake full assessments of disabled people who wish to learn or return to driving. In addition passenger assessments are also undertaken.
This service which is NHS funded and free is available here in the Grampian area when the service’s mobile unit visits Woodend Hospital in Aberdeen on a regular basis. A referral letter from a doctor giving medical details and a contact telephone number is required before an assessment appointment can be arranged. Clients may attend before applying for a driving licence. Assessments are conducted by a therapist and/or a medical consultant and can take 1-2 hours. Other professional advice can be called upon where necessary.
The address of EDAS is-
Edinburgh Driving Assessment Service, Mobility Centre, Astley Ainslie Hospital, 133 Grange Loan, Edinburgh EH9 2HL
Tel.: 0131 537 9192.