My diagnosis was the culmination of various medical investigations which proceeded in parallel. I was having significant problems at work with the functionality of my right hand. It had started to hurt when I typed and used a mouse, to the extent that I first swapped to a totally different style mouse and then began to use the mouse left handed. It hurt to write and swapping to my left hand was beyond the scope of my new found ambidexterity. I was subject to examination by a hand specialist to check, amongst other things, whether I was suffering from repetitive stress injury. I also endured an unpleasant test which involved shooting electricity up my arm which I believe was to check whether I had a trapped nerve or similar problems.
While these issues were being investigated via the doctors and hospital I was also having problems with my knee. It was becoming sore when I exercised, particularly when I cycled. It transpired that this was caused by the decreased flexion in the joint which is symptomatic of Parkinson’s disease but obviously I did not know this at the time. My knee was the subject of investigations which were ultimately fruitless until the Parkinson’s diagnosis.
During this period I was always tired and increasingly suffered migraines. Work was increasingly stressful and it was harder to perform with these debilitating health issues. My confidence was low and I was worried I was struggling to achieve what I felt was required by my senior role. I was incredibly stressed and down about how work was going.
I was bouncing between consultants who specialised in hands and knees and various other medical professionals. I remember talking to the hand specialist who said I did not having any obvious problems with my hands. He asked who I was seeing next and looked knowingly at me as I mentioned the neurologist.
I went to see Mr Henderson at Harrogate District Hospital. He had an unusual manner which manifested itself in never giving a straight answer to a question. He was evasive and tended to answer a question with a question. However, he said he knew what was wrong with me within two minutes of me walking into his office. He mentioned a couple of possible neurological conditions akin to Parkinson’s disease. He explained that Parkinson’s disease was an umbrella term for a number of symptoms including tremor, reduced flexion and and reduced functionality.
Although I was starting to think there was something wrong I was still shocked when the diagnosis was confirmed. I think Karen and my Mum were both upset but also had to endure me in despair when I said some unhelpful and unkind things. Maybe I’m imagining this or maybe I’m not. If it happened then I’m sorry. You hurt those closest to you.
I also remember asking Karen not to put me in a home when I’m unable to look after myself. This was also unfair and again I’m sorry that I asked Karen to promise this. It is not something we ever discuss and the future is so uncertain that it feels like we are best waiting to see how things shake out. However, I always like to be prepared so it’s something we need to think about.
I have very mixed emotions about how to deal with the deterioration in my health. It has been relatively slow but having said that I’m around five years post diagnosis and I’m already on Sinemet three times a day. It probably goes without saying that I don’t much relish the humiliating decline with physical and mental facilities failing. But what is the alternative? Dignitas? Could I put my family through that? Is it worse for them than seeing me unable to properly function? I would never ever abandon my kids if they needed me and I could help them in any way. I’m sure everyone thinks that but the kids’ wellbeing is almost my sole purpose in life these days. It’s one of my few contributions to the machine. I would do anything to keep them safe and if that means manning up and playing the long game then so be it.