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I am a person who has lived with multiple sclerosis since being diagnosed in 1980 when I was a bus driver after experiencing temporary loss of muscle control accompanied by arm and leg co-ordination difficulties, at that time it was put down to inflamed nerve ends and progressively through the years the possibility of MS, then high probability became ever more apparent, Although I had some of the symptoms, I wasn't severely affected until six years after my first 'attack' that lasted for only three months before totally disappearing without a trace. Then after six years remission it raised its ugly head once more when I was trying to build up my greengrocer's and florists retail outlet in Langholm High Street in Dumfriesshire, Scotland.
To explore the origin of this debilitating disorder and to keep up with ongoing research to find a method of checking or ultimately finding a cure, I became a committee member of both Dumfries and Carlisle branches, thereby receiving more relevant information as an office bearer, but through health deterioration I couldn't attend either committee meetings on a regular basis.
I have just recently, this being the 10th May 1999, completed a course of rehabilitation after my last exacerbation that occurred on the night of 5th January of this year. I was first admitted into Dalarran residential home on the next day after the MS attack and remained there for ten days.
I was discharged after this short time and was admitted into the Carlisle Infirmary into its newly opened Neurological Rehabilitation Unit where I received Occupational therapy and Physiotherapy. My saving grace during this time was having the use of the unit's Personal Computer and thereby occupying my mind with doing jobs for the therapists and others.
Looking back, I now realise that it was sleep deprivation that was causing my ongoing anxiety. After my attack, I was unable to change my sleeping position at will, but had to rely on a couple of nurses to do that for me. The trouble was, that I was never in a comfortable position for more than 20 seconds, then I wanted to be facing the opposite way. This was all resolved finally, when I was given a 'T' cushion to sleep with that fitted below my bent knees and through and between my thighs. I am still sleeping with it, and it has made the difference of a good night's sleep or not.
I subscribe to the worldwide organisation, 'Myelin Project'
that aims to find a cure by means of cell transplantation to achieve myelin
The latest news that I have was obtained through their web site on the Internet, was that there have been a number of trials using 'shaking puppies', these are unfortunate dog pups that have been born with no myelin to insulate their nerve ends in their brain. The absence of the insulatory material means that all electrical impulses being sent out from the brain are never received at their intended destinations, normally, the muscles. This manifests itself by causing the muscles to expand and contract involuntarily and to give the appearance of constant shaking.
The tests have also included particular breeds of mice which have a deficiency in myelin. The long-awaited human trials began in the September of 1999 and should conclude sometime in 2001. The volunteers for this trial are only fifty in number. I don't know if I will ever receive the drug even if the clinical trials are successful, owing to my age, being over fifty years old because ultimately it will all come down to the cost of administering 90,000 people with MS with the expensive drug on a weekly basis, and if the government is prepared to foot the bill for it.
I joined the branch ten years ago and attended many business meetings during this period along with a fellow MS person, Ian Soulsby. He had always been a source of inspiration to me, having been diagnosed in 1969. Ian has maintained that Meditation Relaxation and Yoga have been beneficial to him.
Stress management has been beneficial to able-bodied people, but when applied to people with MS, it is particularly useful in alleviating symptoms temporarily.
The branch in Dumfries have few social events throughout the year, the annual dinner is held in June each year. It is usually held in the Embassy Hotel in Newbridge which is situated on the outskirts of Dumfries. A Scottish Country dance band provides the entertainment which includes male and female singers. There is also normally a local celebrity who tells humourous stories or who will sing their favourite type of songs. The remainder of events are revolved around fundraising for the society.
The Dumfries branch donates around 80% of monies raised to MS headquarters in London to go towards research into Multiple Sclerosis. In order to raise the necessary funds, they organise cheese and wine parties, coffee mornings, and a pre-Christmas charity sales' stall which is erected at the Charities' Fair held in Loreburne Hall in Dumfries.
I joined the Carlisle branch in 1986 which at that time held their meetings in the St. John's Hall in Upperby. It was a wooden construction measuring approximately twelve metres by five. It had a small bar erected inside which provided a place to store and serve the spirits, wine, beers and soft drinks that were taken back to an office bearer's home until they were returned, fully replenished for the next month's meeting. The lease eventually expired for those who allowed us to rent the premises from, and they give us notice to move out. We soon found a meeting venue in town which was the Sands Centre at Hardwicke Circus where we held our monthly social meetings and self-help group gatherings for over a year until we fell out with the management over an access violation which they wouldn't prepared to change their mind over.
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