Uncertainty

I was quite detached after being diagnosed with Parkinsons Disease by the neurologist at Airedale Hospital. Liz, my wife, had already suspected that it was something along those lines, so was not surprised when I told her. By chance it was Parkinsons Disease awareness week in Skipton, and we had picked up some information, including a CD-Rom. These were informative, and the main message that came out of it was to seek specialist advice.

This I did by contacting a friend who was Richard Granger, who used to be Head of Connecting for Health in the NHS, and knew the Chief Medical Officer. I asked him to find an expert in Parkinsons that I could approach. Richard took on the challenge with relish, and after talking to several senior people they recommended Professor Andrew Lees, at The National Hospital for Neurology & Neurosurgery.

So, I now went to my GP and requested a second opinion. She was surprised that I wanted another opinion, and tried to pursuade me otherwise, largely because I suspect it was going to cost them more money. Anyway eventually she agreed, not least because I said it was my life, and I had to live with the consequences. She then asked me who I wanted, and I told her Professor Lees at the National, she was gob-smacked, and wanted to know how I had come across him. So I explained that I had a few friends in the NHS, this changed our relationship.

She wrote to Professor Lees, and I got a consultation in London at Queens Square,  on the 11th May 2009. I went down on my own, and spend about an hour and twenty minutes with members of Professor Lees team, who did a series of tests, some familiar to me as they were the same ones I did at Airedale. I was very impressed by the team, and in a stark contrast to Airedale there was live music in the waiting room, a flautist and harpsicord player. What emerged from this was that I had low blood pressure, so when I laid on a bed for a while and then got up my blood pressure dropped dramatically, and I should faint, the doctors said. Anyway that was the curiousity for the team, however they all came to the conclusion that I had Parkinsonism, not Parkinsons. They put me on a standard Parkinsons drug madopar twice a day to see whether it would make any difference.

They could not be sure of which type of Parkinsons I had, as it is a very individualistic disease, so until they had figured out me they could not be certain in the diagnosis. They also confirmed that they do not have a cure, and they do not know why some people get the disease, and others don't, it is completely arbitary. The nearest they have got is that exposure to pesticides might be a cause.  I also came across another suggestion, that if I had been a smoker for most of my life the chances of getting parkinsons would be low.

To make matters worse, I had been having bladder problems over a similar period with suspected prostrate cancer.  As it happens it wasn't, instead they enlarged my bladder neck thinking that would do the job, but it didn't.
So the next stage of this journey with my friend was to London for five days of tests!

Me and Professor Lees and his team.