MGA News Spring 2005

I am home again, in fact I was finally allowed out of hospital just in time for Christmas. This has brought me under Mrs Gravis’ eagle eye, particularly when it comes to diet. You see I lost some 3 stones in weight over the 13 weeks (I’m sorry, but I am too old to be metric about these things). Although no doubt very nutritious, the liquid feed that was fed down my nasal gastric (NG) tube whilst in intensive care was very good for reducing the waist line. Anyway, Mrs Gravis is determined that I shall keep this new sylph like form, so a strict diet is now in force. It does have the advantage that I am saving a mint on clothes; being able to wear things I haven’t dared to try on for over ten years. Fortunately it seems that they have been out of fashion and come back in again.

MG affects each individual in different ways, in my case it has mainly been my head muscles, particularly those which are involved in swallowing; no comments regarding the other parts of my head please. This is of course quite drastic in that not only is it difficult to eat and drink without choking, but you can’t swallow tablets. Although having regained a significant amount of swallow, I still had a problem and was assessed by the Speech Therapists. They not only deal with speech, but also with chewing and swallowing. “What you need is to have your liquids thickened” they said. “Oh yeah” I thought, “If I can’t get thin fluids down, thick ones will be even worse”. At my age I should have known better, they are the experts after all. My fruit juice was thickened with a special thickening powder made from maize and lo and behold I could swallow small sips and it didn’t go back up my nose. I still had a problem getting tablets down, but they had an answer for that as well. They were sure that I would be able to swallow small spoonfuls of Formance Nutritional Supplement (Note 1), this is a thick, smooth, mousse; any similarly textured food would do. They crushed a tablet and sprinkled the resulting powder onto a spoonful of mousse and before I knew it I was taking tablets again without any trouble. As I began to improve, the tablets would go down whole if buried in a spoonful of mousse, thick yoghurt, or custard. Words of warning though, if you are on Cell-Cept do not under any circumstances crush or cut the tablets. The Hospital Pharmacist tells me that if they are crushed they give off a harmful gas. Another word of caution. I was always conscious that at meal times the nursing staff were keeping a careful eye on me. To start with I thought that they were making sure that I had eaten my greens, but no. I was warned that if you are having problems swallowing, you should not eat or drink unless there is someone with you to render assistance if you choke. Makes sense doesn’t it? 

On the subject of tablets, one of the things I meditated on during my long hours in Intensive Care was Mestinon. It is the drug that makes all the difference to so many of us, but given that it is used by myasthenics who may well have swallowing problems, why is it produced in a form which is so difficult to swallow? Even when crushed it remains gritty and it is very difficult to dissolve. I noticed that the nurses had great difficulty getting it down the NG tube, which frequently got clogged by it. On one occasion they could not flush the tube clear and had to replace it. Although not painful, having a tube put in is not a comfortable experience and not one to be repeated more than is necessary. One Sister told me that there is a form of Mestinon already in syrup form. (Note 2) 

In my last set of dispatches I referred to “the Physio-Terrorists”, now although they still strike fear into my heart, I have to say that they were one of my best allies. Their exercises helped my breathing recover very quickly, they also got me mobile again. Leaving aside the affects of MG, its amazing how weak your legs get after several weeks in bed. I think that my problem was that they necessarily have to do their job when patients are feeling at their lowest. Most of all though, they helped me learn to cope with breathing with the tracheostomy when it had been necessary to hook me up to a ventilator.

I have in the past mentioned that Mrs Gravis reckons that at times I am ‘pushy’. I of course contend that I am merely a pleasantly positive sort of person. Either way I must have made an impression and, a few weeks after my discharge, I received an invitation to be part of a Patient Focus Group which the ward were setting up as part of the Hospital’s ‘Public and Patient Involvement Scheme’. The idea being that patients are able to give feedback on their experiences whilst on the ward, which will help to improve the way they care for future patients. I accepted and Mrs Gravis and I duly went along to the first meeting. There were five patients, and the two Sisters running it were very receptive and appreciative of the comments we all made. My point in mentioning this is to say that if you get a chance like this to put something back, do it. In my case it was a neuro ward, used to dealing with myasthenics on a regular basis, but even so we learned a lot from each other. If you have been treated on a non-neuro ward, where MG may be a bit of a mystery, then you will also be doing your bit for MG awareness.

Gravis

Notes: 

1. Both the thickening powder and the Formance Nutritional Supplements are available on prescription, or may be bought over the counter at the Chemists. If purchased over the counter they are rather expensive 

2. I found the reference to the Mestinon Syrup on the Valeant website (www.valeant.com). Our enquiries indicate that the Syrup is available in the UK on a Named-patient basis in the same way as the 180mg prolonged release tablets. Because this product is not licensed in the UK, Valeant are unable to promote it, but they are permitted to respond to queries from Medical Professionals. If you think this is something that would benefit you, you should firstly consult with your GP/Neurologist who would then need to order it on your behalf. They will need to show their (prescribing doctors') details, your details and the diagnosis (i.e. MG!). These orders can be fulfilled from either hospitals or high street pharmacies.

MGA NEWS Spring 2005

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