Changing Life

Although I finished my last post with me getting ready for my five days of tests in London, there are a few things I would like to share before I move on. One thing I have discovered, nobody is in a hurry in the NHS, and the referal system could do with a bomb under it. One piece of 'advice' sticks in my mind, was from the head of my GP Practice, who said that he thought I had Parkinsons at a Birthday party in 2008, but didn't say anything.  What was interesting was that when I met him again in the surgery to tell him my good news, haha, he told me not to look up Parkinsons on the internet because it would scare me, and complicate matters. It was too late, I already had, as one would, and this way I discovered that there was an MSA Trust.

I now began to think about what I could do to slow the onset of this disease, as nobody has a cure for it. It took me to a place that I have avoided for years, the gym. I decided that the adage, 'use it or lose it,' was true, and I should find ways of utilising my body, not least because I am a moutain walker, and couldn't walk the mountains anymore, my mountain days are over. Gym membership came as a birthday present January 2009, I became a fully fledged associate member of the Devonshire Arms Spa. This was a laugh a minute, me in a gym, with very fit young men, and equally fit young women wearing the usual gear, not talking except when their phone rang, and there would be an excitable outburst of conversation. Once finished they would go back to listening to their I-phone music, it is bizarre how you can have several people in a gym who see each other all the time but don't speak to each other. So I embarked on my gym career, and I must say that my claim to fame is that I could do 36 leg presses pushing 90kg, am I proud or what! My family think this is all highly amusing, so much so I got a Christmas present of the correct T-shirt to wear in a gym, but more seriously this has turned out to be a salvation because I was losing work from clients. Once they heard that I was ill and a contract was coming to its end often it was not renewed, but those who knew me better continued to employ me. I am lucky in one sense that most of my work can be done through the computer and telephone, but in my view there is implicit discrimination at play. So with doing less work I had more time on my hands, and still no confirmed diagnosis.

Another interesting by-product of this illness, is that you have to tell the Vehicle Registration Authority of it and they have to consult with your doctors to decide whether you are fit to drive, I received a three year renewable license. I saw this as a positive outcome.

But my urinary problems continued and I was with the Airedale urologist Mr Keonig, because I had an awful few days when my bladder refused to empty, even after the operation. It was extremely painful and worrying, so the GP came to see me, went away saying he would check it out with the urologist but he called back almost immediately and said he wanted me in hospital, and would order an ambulance. We refused the ambulance and got to Airedale emergency where I should have been admitted straight away, but inevitably the piece of paper was put at the bottom of the wrong pile. For a man with a bladder about to burst this was not funny. Eventually I got to the ward and the young doctor recognised me from the operation, she got on with the job of releasing the bladder, which was an almighty relief for me. Now, I can look back on this and see how it fits so well with MSA. So life in the slow lane had begun.

Oh yes there is another side of it which should be noted for those who still sleep with a partner, it is being very noisy in bed when asleep, talking to all and sundry, shouting, screaming, and the rest. But worst of all for the partner is the pinching and squeezing of any part of the anatomy, so much so there is bruising. Yet another charming element of Parkinson/MSA. I don't know how Liz lived with it.



Agony!