Parkinson’s disease v JP Sewell

In the summer I had signed up for the Parkinson’s UK cycling sportive which sets off in Ripley and loops 43 miles through picturesque countryside and some big hills. On my recommendation a number of people including Mike and Greg also signed up to do the ride with me. In addition, several people very generously sponsored me to complete the challenge.

When it became apparent during the build up that my somewhat brittle and injury prone body was going to let me down I was embarrassed and somewhat ashamed to give back word to those who had shown me such support and encouragement. As always, my support network did not see things that way and collectively gave a metaphorical shrug and effectively said “don’t worry about it”. The reason they did this was because every single one of them is a great person. Not in a grandiose, historical figure kind of a way. But in the really matters sort of a way. While I loved them for their generosity of spirit my failure to fulfil my side of the bargain really┬ábothered me and has niggled away ever since.

At around 11 am today I decided that I was going to scratch the itch and ride the route. I made brief and tentative enquiries as to whether a few fellow cyclists were about and wanted to accompany me but it was done at the last minute with no expectation that anyone would be able to join the ride. Unsurprisingly no one could or did. So I set off alone.

It felt very cold and it rained a bit about halfway round.

I was going pretty well and felt strong on the way out of Harrogate, up the always surprisingly tough climb to Burnt Yates from Ripley and up to Brimham Rocks. However, there was a significant headwind all the way and the pull alongside the reservoirs from Pateley Bridge to Lofthouse village was hard going even with the sight of a heron taking off from the side of the road as I cycled passed to distract me.

I got to Lofthouse and realised I was pretty much out of gas with the massive climb up Trapping Hill still to come and then the small matter of getting home to contend with.

My stubbornness is a character trait which is a weakness and it gives Karen all sorts of frustrations. I know this and I try hard to curb it. However, when you have to climb up Trapping Hill on a bike in the cold and wind and you are too tired to do it stubbornness becomes your friend.

I rode up SLOWLY. But I rode up. It took me about 25 minutes give or take which is about 6 minutes slower than my best time. But that isn’t important. What was important was that I got to the top.

The other thing about being stubborn is that you tend to only focus on the immediate issue and don’t properly consider the consequences which follow. So I was on top of the world and it was freezing and I still needed to ride home. And now I was genuinely knackered.

So I descended off the top only now appreciating that the descent has lots of ups as well as downs. I got to Swinton Park and thought “I wonder if I go in and say I got married here” they would give me something to eat. I decided this was extremely unlikely so pressed (in the loosest possible sense) on. After some doglegs I realised I was coming out above Masham which felt a long way from home. I was seriously in the red at this point so made an unscheduled stop to take on board cherryade, a Boost and some Jaffa Cakes purchased at apocalyptic prices from a village shop. They were a bargain as I immediately started to feel better.

From then on I tried to keep a steady cadence but went in spurts and at times crawled along. I didn’t take the correct route back as my intention was to go home via Fountains Abbey which I believe was on the PUK ride. However, I popped out with the long straight pull to the top of Scarah Bank ahead of me. I wasn’t going to retrace my steps at this stage and in any event my total trip exceeded the PUK route by 10 miles.

By now I knew I was going to make it. I made my way along the Greenway and up to and across the Stray. I even managed a few bunny hops over the speed bumps. I got home at around 4 o’clock.

For anyone interested I rode just under 53 miles at an average speed of 13.6 miles per hour. I climbed 4,032 feet and was riding for about 3 hours 54 minutes. My weighted average power was 191 watts and I burned approximately 2,401 kj.

I’m tempted to make a few macho statements about never giving up and winning the fight but I accept that the future is uncertain and predictions often make fools of us. However, I can say without fear of contradiction that today I scratched the itch, I refused to give up and I won this particular skirmish. Tomorrow may be different but I try to live in the here and now.

To anyone who reads this you may think this is just a bike ride and you’re probably right. To those who supported me I suspect you know better. I owed you the effort and I gave it everything today. The one thing I can say about my experiences with Parkinson’s is the people around me are the finest of the finest and the best of the best and I love you all.

My Diagnosis

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.