MGA News May 1997

I suppose that everyone's life has a setback at some point. Luck has been on my side for much of my 49 years but a visit to my GP in 1982 to discuss some strange symptoms changed what until then had been a relatively trouble free health record. Suddenly I had developed a mixture of problems both in my work as a country solicitor and with my hobbies. As an advocate I was experiencing difficulty projecting my voice in court; at home I was finding that the lawn mower had put on weight (not that using it has ever been my favourite task) and my main hobby of music, in particular playing the organ and violin, was being upset by an intermittent lack of dexterity. There are no prizes for guessing the diagnosis which, due to the expertise of my GP and an early visit to my then neurologist, came surprisingly quickly! To cut a long story short, after a fortnight undergoing tests in hospital I was put on a regime of Mestinon and Neostigmine which was to last until 1996, the only other treatment being a thymectomy in 1984.

Although I remained relatively stable for the first 8 years or so, with hindsight I can now see the gradual decline which started in about 1990. It was then that I had to give up playing the violin but, not to be beaten, I took over conducting Baslow Choir, a local choral society, finding the cruder movements of the arms easier to manage than the finesse needed for the fiddle! As a criminal lawyer I was also finding that the 2 am trips to the police station to visit my drunken clients were playing havoc with my strength so I moved from being a partner in the family firm of solicitors to the civil service where regular hours and a good night's sleep were achievable objectives. Life again became manageable.

It wasn't to last. After another year or two, assuming that I would never be able to do it again, I had to give up ski-ing, the one sport at which I had ever shown the slightest proficiency. And then in the second half of 1995 I started to deteriorate rapidly. Walking without falling started to be a problem. Work became harder with driving and reading, in particular, being problems solved only by use of an eye patch. But, far more importantly, I had trouble in the village pantomime. Playing the villain, it was during a scene when I was supposed to change into various different beasties that I lost my balance and fell over. There was only me on stage and I had no strength to get back on my feet. What was I to do? The audience was roaring with laughter thinking it was part of the show and I couldn't get up, let alone be a fearsome monster. I decided to crawl off the stage, where I was hauled to my feet by a member of the stage crew who had no idea why I couldn't get up, and went back on to finish the scene. The show had to go on! All this was witnessed by my same local GP who was in the band, and he needed no explanation when I went to see him the next morning saying "Something must be done!"

It was then that I renewed my acquaintance with Professor Newsom-Davis to whom I had been sent some years earlier for a second opinion. Because of the side effects he offered me what he described as a "choice" as to whether or not I should try steroids. From my point of view there was only one option. I could not go on as I was so I had to accept his recommendation that I transfer to Prednisolone in the hope of improvement. Thus began a battle of several weeks with my local health authority who could not see why it was necessary for me to go to the Radcliffe Infirmary as an in-patient while the steroid treatment was introduced. You will appreciate that the new health service funding arrangements mean that for treatment out of one's own area one's own health authority has to give consent as it has to foot the bill. If you are confronted with such a problem do not give up! In my case I set my wife on them with the result that the in-patient stay was authorised just 2 days before it was due to start. Myasthenics really can do without stress like that.

With various delays it was already March and my physical problems were increasing. A couple of days before I was due to go into hospital, I was to give an after dinner speech at a large charity dinner. As the end of the meal approached I realised that all the chewing, talking and pre-speech nerves had made my lips go "woolly" and I was going to have difficulty not being taken for drunk by the audience! My wife had to rush to the car for a Neostigmine tablet to give me the necessary boost to get me through the rest of the evening. I was ready for a few days in bed by the time I got to the Radcliffe!

And now the good news. It has taken a year for the Prednisolone fully to work but the dose is now coming down month by month and the Mestinon and Neostigmine are history. I am playing the violin again. I have captained the good ship "Hispaniola" in this year's pantomime and, the ultimate test, I have just returned from a ski-ing holiday where I was able to ski all day every day.

The purpose of this article is threefold.

• First, I hope it will be of encouragement to others. Don't give up hope and always make the most of what you can do without grieving about what you can't.
• Secondly, it gives me an opportunity to emphasise how I have come to realise and appreciate the importance of the MGA and all the medical and support staff who work with this little known disease, particularly at the "centre of excellence" at the Radcliffe Infirmary.
• The need to support the voluntary funding leads me to my third objective, to publicise a fundraising weekend at my home, Eyam Hall in north Derbyshire, for the MGA. I was lucky enough to inherit the house in 1990 and it is now open to the public during much of the year.

MGA NEWS May 1997

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