MGA News January 2000

A few days a go a very dear friend, needing desperately to talk to someone, told us, in strictest confidence, that she had been diagnosed as having angina.

It hadn't helped that when she got home from the doctor's, her husband and teenage daughter had laughed nervously and walked away when she told them. This was not as heartless as it sounds, the daughter did not know what angina is and the husband just could not cope with it. Does this reaction sound familiar? I was lucky with Mrs Gravis, she took the trouble to ask about MG. My Consultant and his Registrar went out of their way to make sure that she understood, particularly when five years ago, I spent Christmas unconscious on a ventilator. Her only comment was " well you would have a condition that requires you to lay down at regular intervals". Our friend began to fret about all the things she would have to stop doing Although suffering from a totally different condition, her situation caused me to think back over the years since I came out of hospital. It was not a question of giving up, but of finding different ways to do the same thing. I don't know that she accepted all that I told her, many things we have to learn for ourselves, but I find that sharing someone else's experience often helps point the way.

Having sorted her family, the next hurdle our friend had to get over, but not jump over, was who should be told? She was appalled when I said everyone. I have always made sure that everyone knows I have MG. It is only fair to them and certainly makes life easier for me. Not everyone understands what you are saying. As I have mentioned before, one elderly couple in the village think that I have "Missing Grabitts" and don't know why I haven't had a transplant, but even they know the problems which I can experience and would at least get help if I got into difficulties.

Like many myasthenics, my immune system has been depressed using steroids as the way to reduce the production of hostile antibodies. By now everyone in the village knows the ground rules. If they have even the mildest cold, they don't come and visit me. I in my turn accept that there are times that I can't see people that I would like to. When it comes to going out and about, I do a very simple risk assessment. First of all what is the weather like? If its wet and cold, then I only go out when really necessary. This of course means more outings in summer than winter. Next, where are we going? In winter the village hall is a warm, enclosed swap shop for bugs, so that's out. On odd occasions my keen interest in local affairs , Mrs Gravis says variously, nosiness, mischievousness, or plain stupidity, has led me to ignore my own rules. In every case I have contracted some form of `the virus that is going round' and then been out of action for weeks. Surprisingly, I can get away with a visit to supermarkets. I put this down to the fact that, although there are a great number of people, many with nasty coughs, the excellent ventilation systems in these places draw all the germ laden air up and away. Mrs Gravis, who works part time for an air ventilation products manufacturing company and therefore knows about these things, quotes quite staggering figures for the amount of air that is exchanged each hour. My friends have sussed out the kind of place where I can go out to eat. Locally we have one excellent place which is totally non-smoking in the restaurant and very quiet on a Thursday evening. What's more they have a selection of soft dishes which I can swallow when my throat is affected. Its all a case of assessing the environment into which you are going.

Food in general is another area where we have, almost without noticing it, adapted our lives, for it has to be a family affair. The texture of the food is important as is lubrication, or a cup of tea as we professionals call it. If it is fine and slippery, say like jelly, it goes down with little problem, but course textured foods like biscuits cake and some vegetables, need lubrication. On the advice of the speech therapist, I don't eat things like the skins of jacket potatoes, or fruit peels. I have never quite got used the fact that the speech therapist also handles eating, but I suppose its all part of the same system. When planning our meals Mrs Gravis now automatically takes these things into account. Earlier in the year I was discussing food with a fellow Myasthenic who lives in Cornwall. He and his wife have come to the same way of life. In particular, he has conducted a survey of all the available biscuits and knows which ones dunk and soften without dissolving and falling into the tea to form a thick porridge at the bottom of the cup. He listed the best ones, I seem to remember rich tea and certain types of shortbread being amongst them. With digestives my experience is that you have to know the brand and how many seconds to dunk them. I know that as children we were taught that it was bad manners, only our nice American cousins did that sort of thing and they, poor dears, didn't know any better. Well, by letting everyone know about myasthenia and its problems, I have found no problems, much to Mrs Gravis' surprise, we even get invited back. Best of all, most folk heave a sigh of relief and join in and dunk.

For me the most frustrating aspect of MG is that, generally, only Mrs Gravis and my carer see me at my worst. If I have a low, I can't get out to be seen and am probably in bed. When I go out I look reasonable and am greeted with "you're looking well, you must be getting better". It is at this point that you realise that MG awareness still ain't quite what it should be.

MGA NEWS January 2000

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