MGA News Winter 2002

When I last wrote I was foolish enough to say, “I am turning the corner and am slowly getting back to normal”. I was turning the corner, but what I didn’t know was that there was another dip just round that bend.

I seemed to develop what the late Douglas Adams (The Hitch Hikers Guide to the Galaxy) would have referred to as ‘Military Academy Syndrome’ (MAS); bits of me kept passing out. For instance, I developed a sore eye, which was said to result from myasthenic weakness affecting the way my eyelid moved, causing an uneven tear film on the surface of my eye. This left dry areas, which became inflamed. Artificial tears were recommended and seemed to do the trick. There were a number of other minor ‘systems failures’. When I develop MAS I tend to grunt, groan and mutter, I find this helps me cope with what ever it is that is afflicting me at the time. Mrs Gravis finds this annoying, ever concerned she asks, “what’s wrong”. I reply, “It helps to mutter”, and then add fuel to the fire by saying, “you must learn to tell talk from mutter”. I suppose you have to be of a certain age to understand that last reference, but I am sure that the more mature reader will be able to explain it to the more youthful.

Fortunately, by the end of September I had recovered enough to go with Mrs Gravis and our very good friend Brian, on holiday in Cornwall. We stayed on a farm just outside Truro, where the guestrooms are in the old, granite, cow house. The special thing about these is that the conversion has been done to accommodate disabled and able-bodied guests. The high point of our stay was a visit to the Eden Project, which really is disabled friendly. On arrival, displaying my Blue Badge (used to be orange until the EEC interfered) we were directed straight to a disabled car park near to the entrance. There were ramps everywhere and manageable gradients for the wheel chair. Once into the Project I found that I could descend gently down into the old clay pit in which the Biodomes are built and, once there, could access them and get as close to all the plants as anyone on foot. The only bit that I could not manage was a climb through some plants at the top of the tropical dome. To be honest Mrs Gravis and Brian were welcome to that bit of mountaineering, even sitting in a chair it was very hot and humid.

October saw Mrs Gravis and I undertaking another long journey, this time to the MGA AGM in Plymouth. We have always gone along when we could, we missed last year because Mrs Gravis had just had her cataracts sorted and couldn’t drive. This year she can see all too well, so we had no excuse. It was wonderful, to trundle into the reception area of the Council Buildings and meet all our old friends. Myasthenics being a rare breed, we are spread so thinly that it is difficult to get together and it is good to be able to compare notes. I kept looking round but there was one face missing, Max Sherman. I was soon told that he had other business to attend to, congratulations Max and the new Mrs Max.

As always I came away from the medical talk, given this year by Dr David Beeson on the progress into research into aspects of genetically caused myasthenia, having learned yet more about MG. Although my MG is not of the inherited or genetic type, I did learn why I am advised not to indulge in a Gin and Tonic, or any kind of tonic water based drink for that matter. It seems that quinine, a constituent of tonic water, can block the ACh receptors that have been left free by the ACh receptor antibodies. Life just ain’t fair.

During the AGM there were several points at which I wanted to pipe up and add my two pennyworth. I was prevented, partly because MG had literally got my tongue, but mostly because of threatening gestures from Mrs Gravis, and I know my place.

The one thing that I always do at the AGM is to visit the promotional goods table and stock up with a pillbox or two. Like quite a few myasthenics I have several tablets to take during the course of a day, mostly Mestinon. To help organise myself I use one of the seven compartment pillboxes and put labels showing the swallowing times on the lid of each compartment. In my case seven slots is just the right number. The labels to tend to come off after while, but I have been at it so long now that I know that Sunday equals when I get up in the morning, and that Monday is mid morning and so on. With an elastic band to keep the lids closed I can pop this in my pocket and am supplied with medication for the day, wherever I go. At night, just before getting into bed, I refill for the following day. I can’t claim the credit for this system, my ‘named nurse’ Lorna taught me this as part of my ‘self medicating’ training before being discharged from hospital. To help keep track of where I am with taking steroids on alternate days, I mark the calendar with an ‘S’ and the dose. I keep a second box, made up with a day’s supply hidden in a locked compartment in the car. All medication must be kept secure, an overdose of mestinon would be most unpleasant. This way if I should go out and leave the main box behind I am covered. The other thing I keep in the car is a bottle of water or a small carton of fruit juice. I then have something to take the tablets with.

MGA NEWS Winter 2002

	Notices	Search	Publications	What's New?	Myasthenia Gravis	Research	Top
	Organisation	Fundraising	Branches	Regions	Contacts	Newsletter	Home Page
		MGA Forum	Press & Publicity