MGA News January 1998

Hello, my name is 'Gravis' and yes, I am a myasthenic. Mrs Gravis, a long suffering soul, will tell you that life with me is never dull. "If it were in a book no one would believe it". I suppose it's because I am naturally of an enquiring mind, or nosy as she puts it. If anything, since developing myasthenia life has become even more exciting.

The period of my life spent in intensive care was an adventure most of which I missed, being heavily sedated. Mrs Gravis told me in vivid technicolour all about it afterwards. I was restless and wouldn't leave the monitor leads and air tubes alone. I feel very guilty about the trouble she tells me I caused and can only plead that being in the midst of Myasthenic crisis and drugged, I wasn't my normal self. I do remember the consultant saying, "Not at all the quiet chap I saw on the general ward, quietly reading his Telegraph". I had obviously changed into a 'tabloid monster'.

When I finally came back to my senses, I found that it had been necessary to perform a tracheotomy to connect me to the ventilator. I was breathing through a neat silver tube which passed directly into my windpipe. Although struck dumb, a state of affairs which friends have often felt would do me good, with all that silver on board I felt worth a fortune. The fact remained however, that I could no longer speak, and as Mrs Gravis would be only too pleased to tell you, for me this was serious. I have always had the kind of voice which could reach the back of the hall. I could cope with up to 12 novice obedience dog handlers with 12 barking and yapping hooligan dogs on the other end of their leads and still be heard by the dead. True I could, much to Sister's displeasure, make the most revolting noises via the silver pipe, but this was quickly banned. Communication was by hand-written notes. I still have the note pads and very illuminating they are.

The tube remained in for some weeks and until it was modified to permit limited speech, no warm moist air passed through my vocal chords. They took umbrage at this and revolted, allowing me to produce only the merest squeaky whisper. This, together with the tendency that some myasthenics experience, to be short of breath, made things look quite bleak. If the tube had been gold I should still not have felt properly compensated. As my condition improved the consultant decided that the tracheotomy was no longer necessary and I was totally devalued, the silver tube was removed. I didn't feel a thing and a plaster sleek was stuck over the hole. The wound would soon close I was told, but they hadn't reckoned with my allergy to the adhesive. All I could tolerate was a gauze pad so it took longer to heal over than forecast.

Then a ray of sunshine came into my life, Jane the speech therapist. Shortness of breath and the state of my vocal chords meant that I would not totally recover my former vocal command she said, but help was at hand, I could try a speech amplifier. For the remainder of my stay in hospital, she loaned me a small unit the size of a 1/2 lb pack of butter. It had a speaker on the front, a hand held plug in microphone and could be worn on a strap around my neck. I could speak more quietly, my breath lasted longer and I put less strain on my rebellious vocal chords. Now I could reach across the ward to the nursing station, no more frantically waving messages on pieces of cardboard to ask for the bed pan. I could talk to my fellow patients and to visitors. The doctors were not quite so enthusiastic and eventually one emerged from behind the curtains, where he was trying to conduct an examination and said, "for God's sake turn that thing off, I can't hear a word in here".

When the time came to go home I had to hand in the unit, but was promised an assessment for a permanent unit. Needless to say because the Gravis homestead is in no mans land, the hospital speech therapist could not arrange for the loan of a unit, it had to be done by another hospital 50 miles in the opposite direction to the one I had just been discharged from. "That is where the contract is", I was told. Oh the wonders of market forces in the modern Health Service! My new speech therapist was great, she took me to an assessment lab where I tried a whole range of different systems. The final choice was the Felxital radio system. It consists of a free standing loudspeaker-receiver unit and a small transmitter and microphone, similar to those used in TV studios. This can be clipped to my belt or worn using a neck strap. The microphone I use has a boom which clips to my spectacles.

Until you have been in my position you have no idea what a difference it made. Like most folk Mrs Gravis likes to call from another room and expects an answer. By leaving the receiver with her I could actually answer and without pain. I tried it out in the garden, she could still hear me from the furthest point. If I got into difficulties I could shout help. I have always taken an interest in village affairs, or as Mrs Gravis will have it, like to poke my nose in. The new found voice meant that I could go to public meetings and be heard. The softly spoken Chairman of our Parish Council was told that it was a pity that he did not use a similar device.

It does of course have its problems. The first time I used it in company, I had occasion to answer the call of nature and was comfortably ensconced in the smallest room. Mrs Gravis suddenly started pounding on the door shouting "turn that !@# thing off. The assembled company can hear every satisfied grunt and gurgle". You get so used to it being there and have to remember where the receiver is all the time. On another occasion Mrs Gravis and I had returned to the kitchen to discuss how we were going to deal with a tricky visitor, when Mrs Gravis spotted the red light on the transmitter pack. I suddenly realised that the receiver was probably relaying every word and hastily switched off. On returning to the sitting room I was relieved to discover that our profoundly deaf visitor had switched off his hearing aid to conserve the batteries.

MGA NEWS January 1998

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