MGA News September 1999

In my pre-MG days, some 25 years ago, under the British overseas aid scheme, I served as an Officer in The Republic of Botswana Police (Bechuanaland in the old money), accompanied, of course by Mrs Gravis.

It was during our time there that our friend Kate was born. She is the eldest child of friends who 'lived across the bush' from us. On our return to UK we kept in touch with the family and, following their return two years after us, we spent many happy days with them and enjoyed watching Kate and her brother grow up. Kate's dad, a veterinary pathologist suffered from a condition, unidentified but having symptoms similar to MG, so apart from the fact that they are good friends, there was the added bond of fellow sufferers sharing symptoms. This was enhanced by the fact that, being a pathologist, he knew all about muscle function, viruses and the like. Mrs Gravis used to think that we were morbid comparing notes, but it is my experience that exchanging notes does help and reduces an individuals learning curve. When you have a condition such as MG you need to learn everything you can about it and quickly.

I was thrilled to bits when in the early spring this year we received an invitation to KateÕs wedding. Of course it was in Cornwall where Kate's mum and dad now live and some way from the Gravis homestead, it would mean a stay away from home. Since a severe myasthenic crisis five years ago I have been away, but always to misunderstanding, sorry understanding, relatives who know more or less what to expect. Never to a hotel, guest house, or B and B. But I was determined to go, after all Kate had looked after the Elephant that lived on our roof after we left Botswana. Well how else do you explain to a three year old the very loud noise of birds dancing about on the Tin roof of an African Bungalow?

Kate's mum said she thought that she knew of a farm B and B who would be able to accommodate my requirements. I rang them and got through to Farmer Ernie. He was sure that there would be no problem, they had two ground floor rooms, car parking by the door and wheelchair ramps where necessary. The bathroom was en-suite, absolutely essential as those of you who enjoy the re-laxative effects of mestinon will know. It was, he had to warn me a pig farm, but a very nice one, and so it turned out to be. As well as breakfast, they also served evening meals, which meant that I could eat in and retire early. I rapidly reach my 'use by date' in the evening, my legs give way and I can do without the need to talk intelligently. There being no more than twenty guests and the tables well spread out, the risk of picking up a bug was also reduced. An important part of my survival strategy is always to do a careful infection risk analysis, if it appears low I go for it.

I booked a long weekend and we went. It seemed a lot further to Cornwall than I remembered, but we made it and were warmly welcomed by Mr and Mrs Ernie, who contrary to the unkind predictions of friends in the Village at home, did not put me in warm pen with plenty of straw. We went to the wedding, which took place in a hotel. Once again everything was disabled friendly', the hotel even found a broom cupboard in which I could leave my wheelchair whilst at table. I am not quite sure why, but we were put near to the top table from which Kate's mum kept a beady eye on us.

Emboldened by the success of our trip to Cornwall, we decided to look at the possibility of a weekend break in Norfolk. This time there was no Kate's mum to do the initial spade work for us, but my Brother, who lives that way, went into the Norwich Tourist information centre and got me a copy of a brochure featuring a whole range of accommodation, from five star hotels to B and Bs. This excellent publication had places which boasted wheelchair access, and more to the point ground floor rooms or lifts. We rang a number of them and, as was only to be expected, some were full. Eventually we spoke to Sue, who ran a small B and B in a village near to the Broads. She had a ground floor room with bath en-suite. Her evening menu would do credit to a small hotel and best of all most of the dishes were not on the list of substances banned by my dietician. When we arrived her two sons almost fought over taking the cases to our room. We had a lovely weekend and Sue even posted back the paperback which I left behind. I now know that I can, with Mrs Gravis' help and a bit of care, stay away. There are good folk out there who will help.

MGA NEWS September 1999

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