MGA News Summer 2002

First of all, an apology to Max and to everyone else who was trying to spot me at the excellent Oxford Medical Conference. Acting under the strictest of orders from Mrs Gravis, I had to leave the ‘I am down here’ sign for my wheelchair at home. She was not having me showing off.

Regular readers may remember my experience with the CPAP machine reported in the November 1998 MG News. A doctor at our local hospital’s diabetic clinic referred me to the respiratory clinic. He is a GP who also specialises in diabetic care and happens to have a myasthenic patient in his general practice. At the end of the consultation, he looked me up and down and said “I bet he snores”. This was addressed to Mrs Gravis, who was only too keen to confirm it. “Yes”, he went on”, its all to do with your weight and the myasthenic weakness in your mouth and throat muscles”. “You probably sleep all night, but wake up still tired and that's no good for a myasthenic”. He went on to tell us how successful a CPAP system had been for his patient and offered to refer me to a consultant at the Hospital who, amongst other things, specialised in sleep apnoea. Mrs Gravis eagerly accepted and, after consultation and tests, I was loaned a CPAP unit. Since then I have only slept without the unit when we have had a power failure. I still get myasthenic tiredness building up over the course of the day, but at least I don’t wake up “like a bear with a sore ear”, as Mrs Gravis delicately puts it.

The same Doctor recently contacted me to ask if I would be willing to attend the local GP’s ‘Clinical Evening’, as representative of a myasthenic patient who had benefited from the CPAP system. I should also get to meet the other myasthenic patients. I accepted and this has prompted me to bring you up to date with my sleeping with a CPAP.

The same Doctor recently contacted me to ask if I would be willing to attend the local GP’s ‘Clinical Evening’, as representative of a myasthenic patient who had benefited from the CPAP system. I should also get to meet the other myasthenic patients. I accepted and this has prompted me to bring you up to date with my sleeping with a CPAP.

On a recent visit to the Neurologist I saw a newly appointed Registrar who had come from a large London Hospital. She immediately picked up the fact that I was a CPAP user and was very enthusiastic about it. It would seem that since the time that I was put on the CPAP system the benefit of its use by myasthenics has become more widely appreciated. It is, of course, only of use where the airways are affected. Myasthenia affects different muscle systems in different patients. I learned this whilst in hospital recovering from a severe myasthenic crisis. Our hospital is a teaching hospital and so students accompany the consultant on his ward rounds. On one occasion my consultant, with a mischievous glint in his eye, said to one student, “the myasthenia is affecting Mr Gravis’s face, mouth and throat, but not his eyes, why?” After a long pause, during which the poor girl racked her brains and went an attractive beetroot colour, the consultant smiled and said “I don’t know either, but if you do find out, let me know and we will both be famous”.

My hospital loan unit was one purchased by the League of Friends of our hospital; sadly like many NHS trusts, ours will not fund this kind of equipment. Having recently been left a small sum and being independent (or stubborn, as Mrs Gravis will have it), I decided to buy my own unit. Maggie, the Respiratory Clinic Sister was very helpful and gave me details of two suppliers. I made my choice, and Maggie arranged for the order to be countersigned. CPAP machines cannot be supplied to a patient without medical approval, for one thing the correct air pressure has to be set. My new machine is smaller and quieter than the earlier models and will also run off a twelve-volt battery, so I can go camping again. “Not at our age,” says Mrs Gravis

The machines cost between £250 and £350. The masks, which have to be replaced periodically, cost between £50 and £100. The unit will also have to be serviced annually. These prices do not include VAT, which as it is in respect of the purchase of services or equipment in connection with living with a disability is zero-rated. The supplier will provide the necessary declaration form.

One last word, you must always refer to you GP or Consultant before embarking on this kind of therapy

MGA NEWS Summer 2002

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