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.

Early Days

I'm excited to be doing this for the first time, a real learning on the job e.g. 'Work-based learning'. This is because I am a Profesor in the Institute of Work Based Learning at Middlesex University. You can read lots more about me on my website http://www.simonroodhouse.com/

So I can concentrate on this charming new friend of mine!

I suspected something was wrong when walking in rough heather on the North York Moors with a Duke of Edinburgh group in September 2007. I kept tripping up, losing my balance and falling over and my left arm and leg were not working properly. I thought it could be a stroke so we went home to the cottage we were staying in and with some rest things went back to normal. I did go to the GP and was told that it was stress and that I should 'calm down'.

The symptoms gathered pace with shaky hands, but the most pressing issue was my bladder (I now know this to be a direct result of MSA) which I saw a Urologist for in early 2008 (Dr Keonig). They asessed me with suspected prostate cancer. I was subsequently operated on at Airedale hospital on 1 October 2008. The operation confirmed that I did not have cancer, but did not resolve my problems.

I had been planning a trip to a major international conference just outside Venice, Italy (I take these invitations up as the Italians have wonderful food and drink), University of the North East in Boston USA and Deakin University, Melbourne, Australia. The trip was demanding for any fit person, let alone one that was suffering involuntary leakages. This was the last big trip I would make.

Anyway, I met and stayed with my cousin Penny at her lovely house in Boonah, Queensland. She lives in a very nice spot, but she has had to work through her husbnad dying of cancer while she had breast cancer treatment. Today she is having further chemo to safeguard her as a result of her other breast being cancerous. Compared with me I think she has had a rough time but she is remarkably cheerful and has a remarkable friends network who look out for her. When I was staying with her she organised a BBQ and invited her physiopherapy friends to the party. By this time I was extremely tired and having bladder problems. As the guests began to leave they were talking to Penny quite earnestly and two of the physios stayed back for a while. One of them asked me if I was feeling alright and of course the answer was 'yes', but after all the guests had gone and sitting on the verandah with Penny surrounded by a beautiful night's sky, she said I should go and see a consultant neurologist so when I got back home it was back to the GP.

I duly had my appointment with the consultant neurologist in February 2009 and met my near neighbour waiting as well, which was a complete surprise. When I saw the consultant he took about 20 minutes of standard exercises to diagnose Parkinsons Disease. But that was still not the end.

Me at the University Club NYC 2007

For more details about MSA go to: http://www.msatrust.org.uk/