MGA News Autumn 2002

I have had rather mixed fortunes this summer. It started off quite well, in May Mrs Gravis and I took a week’s holiday in West Norfolk, enjoying a stay in a farm conversion cottage. There are a growing number of these available all over the country, mostly converted farm buildings such as pig sties, cattle sheds, barns and stables. Many like ours, a converted ‘Gig house’, are all on the ground floor and totally accessible for those with limited mobility. The farm where we stayed has plans to convert a further two buildings, this time making them specifically disabled-friendly. This will be done supported by Farm Diversity Grants. I understand that there is special provision for projects targeted at helping the disabled.

The day before going on holiday, properly cleaned and tidied up by Mrs Gravis, after all doctors may only see the best clean underwear, I went as a specimen patient to a ‘Clinical Evening’ organised by the doctor who had referred me for CPAP therapy. I met his Myasthenic, CPAP, patient, who was about my build and even had the same initials. We exchanged symptoms and were comforted to find that we had similar histories, except that he had managed to avoid a myasthenic crisis, but as I am frequently told I never do anything by half. We were quizzed by a succession of doctors, mostly GPs, who had to work out what medical problems we had. All were very courteous and most worked it out on the basis of our medication. Having for years been quite open about being Myasthenic, I found it very difficult not to mention it and give the game away. One session came to a halt when a consultant who had seen both of us and put us onto the CPAP, came in as part of a group and said “Oh no, I know you two”. I hope that for the doctors we provided some interest and heightened their awareness of MG. We certainly both benefited.

In July, together with a friend, we had an expedition to Hampton Court Flower Show. Our first mistake was to follow the AA recommended alternative route. We had a slow tour of the leafier suburbs of London and took 2 hours longer than if we had gone our own way. Mrs Gravis was quite clear on her feelings about the time that we had missed at the show. Once there, everything went like clockwork. The Blue disabled badge had us directed to the disabled car park, next to the show entrance. As a special treat I let Mrs Gravis go to the `Showmobility’ tent to pick up the scooter that I had pre-booked and ride it back to the car. The show ground had been laid out with disabled access in mind, there were ramps, metal sheeted walkways and wide doors to tents and stands. After about an hour and at the furthest point from the Showmobility tent, the scooter, suddenly stopped, flat batteries. Fortunately we were near an RHS information stand. Mrs Gravis asked for help and a very nice Safety Steward arrived and called for help on her radio. A replacement machine was promised within the hour. Mrs Gravis could see another hour going from her time at the show, but no, the Steward said she would stay with me until help arrived. Mrs Gravis and friend could go and look at all the things that, well to put it gently, I would not be heart broken if I missed. The new machine having been delivered, I rejoined Mrs Gravis and Friend. Its amazing who you meet when you are some distance from home, turning a corner we bumped into the Vicar and her husband. Husband and I, having mutual interests, start talking shop. Vicar says, “You will both pay for talking shop at the show”. I reply that “I am getting my monies worth for afflictions already suffered”. There is then a sharp shower of rain, perhaps she does have a direct line. Watch out for shows with Showmobilty (a registered charity) you can normally pre-book and it does mean that those of us who have legs with a short use-by-date can enjoy the show.

No doubt by now you are saying, “Gravis has been a busy bee”. Well, yes and I paid for it in the form of a myasthenic relapse. My first career was as a Merchant Navy officer, and us ‘old Sea Dogs’ are quite superstitious (Mrs Gravis agrees with the ‘Old’ and the ‘Dog’ part of that). I should have known better than to whistle up a storm by saying in my last dispatches that MG had not affected my eyes. I didn’t suffer double vision but my right eye nearly closed up. I thought I would have to make use of a ‘Lundie Loop’ to keep it open (details of this device for assisting where muscles in the eyebrows and lids are weak are available from MGA). My tongue and lips stopped doing what I expected and I sounded drunk as a lord. As always, I didn’t mess about, I went straight to my GP, my medication was adjusted and a visit to the Consultant who looks after me was arranged. After a few weeks and a lot of rest, I am turning the corner and am slowly getting back to normal.

I am reminded that myasthenics do not respond to a significant change in steroids like other folk. There may be an initial increase in myasthenic weakness and as the MGA Medical Companion says, “except for those with only mild symptoms, (steroid) treatment is often begun in hospital, to be on the safe side”.

MGA NEWS Autumn 2002

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