Before going much further I think we should have some sort of definition so we know what it is and I have chosen the MSA trust version;
“Multiple system atrophy (MSA) is a progressive neurological disorder that affects adult men and women. It is caused by degeneration or atrophy of nerve cells in several (or multiple) areas of the brain which can result in problems with movement, balance and automatic functions of the body such as bladder and blood pressure control.”
It is more prevalent in men than women, there is no cure, and it seems average life expectancy from the time of diagnosis is 8 to 10 years. This helps to focus the mind and I must say that cleaning the car or washing up seems peripheral now. Things like healthy eating taking exercise and alcohol in small doses scheme irrelevant. So, I have a large gin and tonic most evenings which I thoroughly enjoy, not least because I am no longer reprimanded by my wife for drinking too much! If I want a cream doughnut I get one, no hesitation. The only downside to this I think is the time it takes me to eat; I'm always last by some margin. The best way to keep me occupied is to give me a beef steak for tea. I would be at the table for hours, it is a good job it is not my favourite food. So in some ways it is liberating. The hard part is not knowing what will happen next, which part of my body will malfunction and for how long.
My energies have gone into trying to manage this condition. So as I have been working less and hardly travelling anywhere that time has been progressively been taken up in the gym working on exercises designed by the specialist physiotherapist from my local hospital. She is very good and has worked with people with my condition. She has given me exercises to do morning and night to strengthen my core muscles and improve my posture which is dreadful. I even got a gym ball for Christmas, how sad is that? Exercising might be good for me but it cannot stop the inevitable deterioration of my ability to walk, talk, carry things, gardening and unscrewing bottles. I suppose I have to learn to decline gracefully, and accept help when it is offered.
As the result of the five days of tests, I have increased my team of helpers considerably with the speech therapist, continence nurse and a specialist physiotherapist as well as the team in London. I think this is where the NHS is truly amazing, all these people looking after me!
I eventually get the invitation to the urology department and had to take my trousers and underpants off and lie on my side to expose my back passage. The doctor then proceeded to connect a needle to a computer which measures the communication frequency between the nerves around my back passage and the brain. They mentioned that it would take about 20 min not too uncomfortable and moving the needle around, but it was the way in which they could confirm or not that I have MSA. Not only that the consultant who devised the test, is retiring, so she wanted to show the other younger doctors believe how to do it and as it turned out I was the guinea pig.
Next week I will talk about autonomic nervous system test
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