Friday comes around far too quickly! Today I want to go back to the way my MSA ‘friendship’ has developed and continue with the saga. The five days of tests kicked off the next phase, with a specialist physiotherapist getting in touch and a speech therapist. I was already on the books of the Continence Clinic, so now my NHS team included my GP, Prof Lees and his team, Prof Matthias and his team, Mr Koenig the urologist consultant, the speech therapist, physiotherapist and the continence nurse. Not bad, considering all they can do is provide palliative care. In other words, make my decline as pleasant as possible. Talking about decline, what really gets me with this disease is its capacity to attack the very things that matter to me, like walking, eating and talking! It also has the capacity to humiliate with urinary and saliva problems which I no longer control. It is like some alien progressively taking control of my body. Oh yes, there is one other embarrassment to cope with, making noises when walking. It is like I have been a smoker all my life on 40 a day. It sounds as though I am at death’s door, so people turn and stare and look very concerned.
If 2009 was the year of discovery, 2010 turned out to be about establishing a pattern of living and learning to do less. My week takes a very different shape now, generally working in my converted barn office in the mornings and going to the gym in the afternoons, with an occasional trip to London. During the year my book on Understanding Workbased Learning was published by Gower not bad considering the circumstances. I was also put on a six monthly cycle for my medical consultations in London. My drug regime remained quite stable over the year, with one drug to help with movement and the other to assist with urinary control. It's amusing really when you have a consultation. You have to explain everything all over again and do the same tests again to generate the same conclusion, except perhaps things are getting slightly worse. So, for example, I mention my urinary problem is not getting any better so the doctor gets out the drug dictionary, quite a big volume, and looks up to see what is available and then prescribes a new drug often with little explanation of what taking it will be like and any side effects. This information is never offered unless I ask.
So things were settling down until June 2010. We had arranged with Grace our youngest daughter to attend her graduation in St Andrews [following a certain Royal couple’s footsteps] and stay overnight because it is a 250 mile journey there. We were all looking forward to it but I had been making terrible noises at night and had a chesty cough, which I dismissed as nothing, typical male reaction, but it persisted. I decided to do something about it because I didn’t want to be making that kind of racket in the hotel. I was so loud and noisy that Liz would get out of bed in the middle of the night and go to one of the other bedrooms to get some sleep but even with the doors closed she could still hear me! So I phoned my GP at the prescribed phone in time and told her about my chesty cough. Boy did things happen quickly; she wanted me in the surgery straightaway. I went there in the afternoon and she did the usual tests of listening to my lungs and blowing into a tube. I was then fixed up with an emergency X-ray at Airedale hospital and told if things didn't improve quickly I would have to be admitted into hospital, which would mean I would miss Grace’s graduation. I certainly didn’t want to do that - after all the money we had spent on her I wanted to see what I had paid for! So I was put on some hard-hitting antibiotics and hoped for the best. I had never seen my GP move so quickly and show real concern. It all turned out okay in the end, the antibiotics worked, I felt better and we had a great time in sunny St Andrews. When I went back to my GP and asked her why she had been so concerned she said it could have been pneumonia which would kill somebody like me with MSA and that in future I should get in touch if I developed a chesty cough again. What I also learned from this is that it is common for people with MSA to die from some other malfunction caused by the MSA. More things to look out for! I will write again next week about trials, drugs, and consultations. I hope you are still enjoying reading my blog and finding it informative. A big thank you to everyone who has sent me messages. Keep them coming!!
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