MGA News Autumn 2005

I am pleased to report that I am continuing to make steady progress following the myasthenic crisis I experienced last year. I have now been taking Cell-Cept for ten months and it seems to be getting to grips with things; so far my blood tests show no adverse reaction to it.

What has been a real problem for me is my speech. In my case the primary effect of MG is what the doctors refer to as ‘bulbar’. To me that’s something that you have on the front of a 4 x 4 vehicle to fend off livestock. My learned medical friends assure me that it means, “... applicable to the movements of chewing, swallowing, speech and breathing, controlled by the lower brain stem”. When I first wake up, or after a good rest, my speech is near normal, but as I tire I develop what I like to think of as an attractive ‘Toyah Willcox lisp’. This is OK, but as I continue to tire I rapidly degenerate through ‘Jonathan Woss’ to very slurred and finally unintelligible. As Mrs Gravis will testify, it is all very well silencing me, but annoying to us both when I can’t communicate at all. As a result my GP referred me to the Speech Therapist.

At our first session she took my history, listening and watching carefully to see how I went about speaking. Then she put me through a number of tests, getting me to produce different sounds; I began to imagine that I was an opera singer warming up. I was pleasantly surprised to find that she thought that my speech was better than I had judged it. She observed that I had unconsciously developed a number of good techniques to cofor a repeat if they don’t understand.mpensate for the difficulty in making sounds such as Th, Gh and Sh, in fact anything that involved positioning the tip of my tongue. I talked about the problems that I have making myself understood on the telephone and mentioned that I start a call to anyone who does not know me, with the warning that I have a speech impediment. She agreed that this was a good approach and confirmed what I had found, that people are very good and very helpful once they understand that there is a problem and realise that you don’t mind them asking for a repeat if they don’t understand.

The second session, a week later, was a very useful hour. We looked at some common phrases and sentences that I use to try and communicate with Mrs Gravis and found the best place to break them into sections to make the most of my breathing. I was also given some homework based on these exercises. Next week Mrs Gravis would be invited in for part of the session. The Therapist said that she finds it helpful to get a picture from a partner or family member’s view point. I shall have to be on my best behaviour.

At the end of week three all went well. I had done my homework. The slurred speech and running out of breath had become less of a problem; helped by the techniques that I had been taught and had practiced. It was a lack of volume which was now my main worry. I found that, even with great physical effort, I could not make myself heard over normal background noise or in conversation with a number of people and I tired quickly. To overcome this I was loaned a small personal speech amplifier to assess whether it would help in making me heard in company and at meetings. It is a small box which I clip in my top pocket and a boom mike which makes me look, if not sound, like a pop star.

After a month I met the Speech Therapist again to assess my progress and to see how I had got on with the speech amplifier; I was able to report that it had been a great success. The first benefit I had noticed was that, no longer having to work so hard to produce the volume, my speech lasted longer and was much clearer. I had been able to participate on equal terms at committee meetings, some would have it that I coped too well. Mrs Gravis could once again enjoy my scintillating conversation when we were out in the car, even the dog could not pretend not to hear me now. I am still using the loan amplifier and have been recommended for one on a permanent basis.

MGA NEWS Autumn 2005

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