December 02 & January, February 2003

Botox for Bladders
Research at the University of Pittsburgh has shown botulinum toxin (botox) injection may return bladder control to people with continence problems caused by MS.

Botox is more often in the news now as a treatment favoured by ageing “beautiful people” to slow down the ravages of time but it has long been used as a treatment for a number of medical conditions. Now it has been shown to aid bladder conditions.

“The injections are an effective and promising treatment for patients with problems controlling their bladder. The use of botox injections can offer a safe but temporary solution to this embarrassing problem” said Professor Michael Chancellor.

Forty-one of the fifty patients in the study reported a decrease or absence of incontinence after the injections. The improvement was seen within seven days and symptoms were alleviated for approximately six months. None of the patients experienced long-term complications from the treatment.

The Great Debate
The most versatile and useful source of stem cells is the embryo, because embryo stem cells give rise to every other type of cell in the body.

It was generally thought that adult stem cells have limited potential.

However, in recent months, researchers have found a stem cell in adults that can turn into every other cell type.

Two promising new studies from the US (one using bone marrow stem cells, the other using embryonic stem cells) are likely to further the promise of stem cells for therapeutic purposes, as well as carry on the debate of whether adult or embryonic cells should be used.

Banking on Stem Cells
Europe’s first stem cell bank, based in the UK, could be operating within a year. Aiming to increase research into understanding the cells, the bank will hold cell lines derived from stem cells, which survive indefinitely and continue to multiply and reproduce.

It is thought advances in stem cell research could significantly increase understanding of various illnesses and conditions, including MS.

A £2.6 million contract to set up the bank has been awarded by the Medical Research Council to the National Institute for Biological Standards and Control.

The Chief Executive of the Biotechnology and Biological Sciences Research Council, which will fund the bank with MRC said “It is vitally important that we develop a firm understanding of how stem cells work so that we can go on safely to deliver the amazing healthcare benefits this science offers.”

A steering committee of scientists and bio-ethicists will develop a code of practice and regulate the running to the bank.

Talk on Pain Management
Mike and Rosemary Morrison, who were representing the local Grampian support group of the Pain Association Scotland, recently gave a talk at the SRC.

Mike spoke of his own experience of chronic back pain over a number of years and his participation on a pain management course in Manchester. After a background of being on heavy medication for pain control for a number of years, Mike had noticed a significant improvement in the management of his pain after a period of only three weeks on the course. He and his wife Rosemary decided that they both wanted to spread the word by forming a local support group. They were the first husband and wife team so involved.

It was explained that general ideas on pain management have changed significantly over the years. Pain killers and plenty of bed rest was ‘order of the day.’ Nowadays, this is frowned upon and the advice is most definitely to keep active.

A lot of themes were highlighted, which are not uncommon to people with MS who especially frequent the SRC. Words such as anger, denial, frustration and support were sprinkled all over the talk. I feel that all will agree that these themes are well known to us all.

Coming back to the pain control techniques, the broad headings which are covered by the management programme are as follows:

Breathing
Relaxation
Light exercise
General management
There are several relaxation exercises, which have been developed in order to provide a little variety.

There are a few light exercises, with the emphasis on ‘light.’ Repetition of these is kept to the minimum amount in order to maximise on the effect, without exhausting the participant. It was even stated that if on a particular day you are unfit to carry out the exercise, the very act of ‘thinking the exercise through’ could produce 25% of benefit. This was of particular appeal to me! I wonder whether Linda, my physiotherapist, will ever notice?

General management is broken into ‘ten easy steps’ which are as follows:

Be realistic
Get involved
Learn relaxation and the value of distraction
Recognise thoughts and feelings
Safe Movement
Set priorities
Set realistic goals
Know your basic rights
Communicate
Rediscover hope
All of these ‘easy steps’ form the basis of strategies, which are taught by the local group. The local group also provides the environment in which one can practice these strategies.

The objectives of the group are to enable participants as follows:

To step out of the pain/stress cycle, even temporarily
To increase the sense of well being
To re-discover some feeling of being in control
To take away something they can do for others
For those interested in getting involved, the following are the details:

Pain Association Scotland
Head Office, Crammond Glebe Road, Edinburgh EH4 6NS
Tel: 0131 312 7955 Fax: 0131 312 6007
(enquiries : 0800 783 6059)

It must be borne in mind that this is not a cure but is an alternative means of management.

Whilst this is not for me, due to the repetition of techniques and strategies already personally experienced, it may still be worth your while in trying as an alternative. I would be more interested in a more conventional talk given by a clinical practitioner, as I would prefer to fully explore this avenue in the first instance.

Please remember that this is very much a personal view and what is right or wrong for me is not necessarily right or wrong for you. It is therefore best to keep an open mind.

Reno Zinopoulos

For a website that gives a huge range of complementary methods of dealing with pain, log on to www.painsupport.co.uk.

If you don’t have access to a computer we can send you some print outs.

Sue Ryder Care Grampian Project
” A future Not An Existence”
In March 2003 a unique care development will open in Kincorth Aberdeen, one of the first of it’s kind in Europe. Care will be offered for up to twenty people with severe degenarative neurological conditions, Huntington’s Disease and Multiple Sclerosis. The service has been developed thanks to the special partnership between Sue Ryder Care, Aberdeen City Council Social Work Dept, the commissioning body, NHS Grampian and Communities Scotland.

Current and potential service users were consulted in the design of the project and their views led to the design of the project. The design is based on the concept of five self contained, four bedroom houses with access from a wide, glazed internal street. Each resident will have a tenancy agreement. Each house has an individual front door and post-coded address.

A café cyber-café will be open to all residents and the local community. A hydrotherapy pool will provide therapeutic, physiological and psychological benefits for both residents and the wider community. A Chapel is available for residents who wish to worship or simply want a place to stop and think.

The communal grounds around Dee View Court will be attractively landscaped so that all the community will benefit. The tenants will also have their own transport.

An on-site Visitors House will enable friends and family to stay on a regular basis and there are also two respite houses. Enquiries would be via Care Managers alternatively anyone wishing to know more can contact Georgina Harvey, Regional Manager, Sue Ryder Care 07815 755832

A Positive Endeavour
We started a support group in May this year meeting fortnightly during the morning. There has been a good attendance for these semi structured/informal meetings (always room for more). I have benefited tremendously from the group as we talk openly and to people who understand the problems and anxieties you have. Sharing your experiences and disorders with others who understand them gives you a feeling of relief to know others have had and dealt with the things affecting them. I have benefited from the group so might you, why not pop along we are a friendly lot.

Teddy Thomson

Looking for Respite
The MS Society’s Respite Care Directory which offers a new service to people looking for respite care that meets their needs has now been launched.

The directory lists around 320 providers of respite care as well as the four remaining MS Society homes. It aims to help people make better choices by offering information such as whether care homes and agencies have had training and/or experience in dealing with MS, agencies that provide respite care at home and those equipped for dealing with respite care at short notice.

The UK wide directory offers people options in addition to those offered by care managers and will be publicised among health care professionals.

The Centre has a copy for people to browse through at their leisure. An online version of the directory can be viewed on www.mssociety.org.uk and will be updated regularly.

Talk on the Multiple Sclerosis
Tissue Bank
Professor Richard Reynolds from Imperial College School of Medicine at Charing Cross Hospital in London gave an interesting talk at the SRC.

The Multiple Sclerosis Society has funded the tissue bank for the last 5 years and has recently been awarded a further grant for the next 5 years.

Professor Reynolds spoke about MS – what is it,research, treatments and the work that the tissue bank is currently undertaking in the U.K.

If anyone would like further information on the work of the tissue bank please contact the SRC on 01224 692777 or alternately contact the Tissue Bank direct tel no. 02088467324 or if you would like a tape recording of Professor Reynolds talk please contact the centre.

Christmas Shopping
Remember to pay a visit to our small gift shop. We have a range of Christmas cards and interesting objects that Nora Campbell has shopped for down town and around so that you don’t have to brave the crowds.

Life on the Ocean Wave
Well folks, Graham Sutherland and I are back and what a time we had!

We left Dunstaffinage near Oban and sailed up The Sound of Mull, past Duart Castle, to Tobermory. On the evening we arrived there we visited the local public house “The Mishnish Hotel”, but to do this we had to go ashore in a dinghy and unfortunately I missed the dinghy and landed in the harbour -well I have never laughed so much in my life and neither should I say had the rest of the crew.

During the night a gale got up and we were stuck in Tobermory in a force nine gale which was a real experience. The Sunday brought calmer weather and we sailed to Lochaline and when I say we sailed we really did sail the boat. We had to do the sails, steer the boat, etc. (When you think that I can’t drive a car but I can steer a boat.)

The following morning we were all up early to go for a swim. Only thing was I volunteered to test out the temperature of the water and it was freezing. Trying to let on to the guys that it was nice and warm was not easy and did not work. Then we sailed through the Cuan Sound to Craobh Haven where we enjoyed another evening of refreshments at the local hotel.

Next day was our last day sailing so off to Oban first where the local papers and radio was waiting for us and it was there that I did the most terrifying thing that I have every done in my life and that was to climb the mast. Terrifying, but exciting and well worth doing. Then off back to Dunstaffinage for our last night on board.

The following day Graham and I did an interview at the local radio station which was fun. Then it was back to the boat to pack up our things for the next crew to take over.

The whole week was an experience I will never forget and the people we met, we will also never forget. As for the scenery it was out of this world – you haven’t experienced the West Coast till you’ve seen it from a boat.

If any of you are thinking of doing the Multiple Challenge don’t think about it DO IT! You won’t regret it. Apart from us having such a brilliant experience we also raised over three thousand pounds. Not bad for having a great time eh?

Anne McRae

Bon Accord Shopping Centre Special Evening Invitation
As you may be aware the Annual Christmas Shopping evening for disabled shoppers was changed last year from the traditional evening event to a morning one. This proved to be disadvantageous to many people.

This year therefore, the Bon Accord Shopping Centre has decided to hold it’s own Special Invitation Evening.

Tenants of the Bon Accord Shopping Centre would therefore like to extend an invitation to the centre on the evening of Tuesday 3rd December.

Most shops will remain open from 5.30 pm, until 8.00 pm, and will be happy to provide service and assistance as required. Loch Street and Harriet Street car parks will be entirely free of charge from 5.30 pm onwards and attendants will be available throughout the evening.

A limited number of wheelchairs are available on a “first come, first served” basis.

The Management and staff of the Food Court have very kindly agreed to provide and serve free tea and sandwiches on the evening. Ted “The Bear Factory” will be on hand with his helpers and there will be a free prize draw and entertainment. For further information tel 01224 647470.

Cannabis Trials are Encouraging
The Multiple Sclerosis Society has commented on the announcement by GW Pharmaceuticals plc of results from its first four completed Phase III clinical trials of cannabis-based treatments.

‘These preliminary trial results appear very encouraging and we look forward to seeing the full results reviewed, said the Society.

We hope we are moving much closer to the day when people with MS will have access to cannabis-derived drugs which have been proved both effective and safe in the treatment of symptoms of this long-term condition.

In the meantime, we continue to argue that people should not be criminalised for using a drug which can alleviate those often painful symptoms and have asked the police and prosecuting authorities to deal with cases sympathetically’.