MGA News Spring 2006

The first ‘Life with Gravis’ was written in November 1997, almost three years after my first myasthenic crisis. What prompted me to write it? An incautious comment made to the then Director of Operations, “Why is the MGA Newsletter so full of heavy medical stuff, illustrated by unsavoury and detailed descriptions of things like urgent bowel movements?” “Ok, if that’s how you feel go and write something different”, was the response. Eight years on and eighteen months after a second crisis, I am still scribbling; well to be precise tapping the keys on my PC, because no one would be able to read my handwriting, not even me.

I have now been on Cell-Cept for fifteen months. I am making good progress and have been able to reduce my steroid dose by 10 mg on alternate days, with a further reduction planned. I also need less Mestinon. My blood tests, whilst indicating that my red cell count is normal for a female are otherwise OK. I can live with that small part of my feminine side, after all Mrs Gravis manages very well on that level of haemoglobin (that’s the red stuff in your blood that carries the oxygen). Of course I do still have down days, but they are becoming fewer.

During my spring visit to outpatients last year, my arm twisted by Mrs Gravis, I asked the Consultant what might be a sensible level of activity for me. Knowing me as well as he does after all these years, he replied, “The problem is that you will live dangerously”. This is true, I hate doing nothing, my mind still works overtime and it’s just my body that can’t keep up. I have now learned that I have to listen to my body. I apologise for using that trendy phrase but for once it’s one that does ‘mean what it says on the tin’. For each activity I have to look at what is involved and allow a couple days for rest after a really challenging effort. I have also learned that I have to say ‘NO’ when a tempting invitation would lead to over doing things. “Do you say no”? I hear you ask, well most of the time and not often enough if you listen to Mrs Gravis.

At the end of January, feeling quite bright and well rested, I accepted an invitation to visit that holy of holies, the new MGA Headquarters in Derby. The distance from our rural backwater meant that driving there was out of the question, so it had to be the train, to be precise that nice Richard Branson’s Virgin Cross Country service. I hadn’t been on a train since before privatisation so this was going to be a new experience. Much to my delight I found that by booking ahead I could reserve our seats and it was cheaper. Had I wished to take my wheel chair, by registering this at the time of booking, arrangements would have been made to see that assistance was available to get me on and off the train. I was particularly impressed by the way passengers who had been using our seats before we joined the train, immediately and cheerfully jumped up and let us sit down. We arrived at Derby on time and a short Taxi ride brought us to Southgate Business Centre.

At first we couldn’t see HQ only a number of large shops. Then Mrs Gravis spotted the reception desk for the Business Centre, where we were quickly signed in and directed to the floor with the MGA Offices on it. I am sure that many people have the image of a vast suite of high powered luxury office accommodation; wrong! The offices are modern and provide our hard working support staff with a decent environment to work, but are in keeping with what is required and a great improvement on Keynes House. Oh and there aren’t dozens of staff. In addition to our revered CEO, Alasdair, the staff number just two full timers (Max and Jane) and two part timers (Joy and Jackie) and one youth, Jamie, doing work-experience training 3 (shortish) days a week. They also have occasional assistance from a few volunteers. When we arrived, Max Sherman, the Support and Office Manager, was preparing a mail shot for the forthcoming Bulb Planting fund raising project. Imagine the work involved in putting all those letters and leaflets into envelopes (around 21,000 for this one job alone) and preparing them all for posting. This is of course, on top of all their other duties.

We had met nearly everyone before, either at the Oxford Medical Conference, regional seminars or the AGM and they have all had to take my phone calls giving lame excuses for my missing the MGA News copy deadline. We saw the small Board Room where those ‘worthies’ the MGA Trustees meet six times a year. This is also used for other meetings and to collate the many papers printed and circulated by headquarters and on behalf of Branches. The total headquarters consists of a Board Room, a Stock Room and an Office (with two cubicles portioned off). Toilets and kitchens are shared with other tenants.

Our visit at an end, Alasdair, on his way out to yet another meeting, kindly dropped us off at the station. The trains were on time and we arrived back at the Gravis homestead to be warmly greeted by the Gravis hound, a GSD of 101/2 going on 2 years of age. He had been spoiled by a kind neighbour whilst we were away. I was very tired but encouraged by all we had seen. Yes it did take me three days to recover my strength, but I always say, much to both Mrs Gravis’ and the Consultant’s despair, “Once I have done it no one can take it away”.

MGA NEWS Spring 2006

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