Why I Decided to Write This Blog

Good question!

The main reason is my personal perception that awareness of Parkinson's is not as high as it should be. Although (again perception) other degenerative diseases such as MS and MND are in the main a bit more brutal, I still feel Parkinson's tends to be overlooked. The number of people in the UK with the disease is around 150,000. Nevertheless, it is the fastest growing disease of its like and the reasons are pretty much unknown. Needless to say, the many channels of supposed cures appear to be many years from fruition. In itself it is not terminal (although the knock-on effects of the symptoms ( for example, falls, congestive lung illnesses) can most certainly lead to death. So, it's not terminal but is currently incurable). In-all there are around 40 different symptoms.

I first became aware of my symptoms just before or during the early stages of COVID. I did a lot of research on Google and became confident that I knew the problem (mainly a worsening tremor in my right hand) was Parkinson's. However, with all that was going on with COVID I was desperate not to go to hospital for fear of getting COVID, therefore I delayed consulting my GP until after the worst of COVID was in the past.

So, after referral to hospital from my GP, I was eventually diagnosed early in 2022. I feel I took the news well and the impact of the disease seemed far enough away so as not to trouble me unduly for many years and hopefully the prescribed drugs would hold things at bay.

On reflection I feel I probably underestimated the situation and although I still consider myself fortunate to have endured relatively mild symptoms for most of the past 4 years, Parkinson's has by now kicked my arse enough times to make itself sufficiently known.

One thing to watch out for which I also got wrong, is the effect on your loved ones. Although I had originally tried to hide my tremor (now I don't fully understand why), I talked to my wife Lynne about the situation but when I breezed back in the house, returning from my consultation with a confirmed diagnosis, the look of shock/sadness that passed across Lynne's face was like a knife through my heart. I became immediately and acutely aware that I must have underplayed the situation during our earlier chats, and she had adopted either a more optimistic or or simply dis-believing position.

In writing this blog, even though I believe I have a reasonable grasp of the important aspects of Parkinson's, I do not hold myself up as any kind of expert or authority. I must be clear about that. The real expert is my consultant at the hospital and also the Parkinson's nurse who visits me from time-to-time to see how things are going, review medication and has in fact recommended certain adjustments and additions which have worked very well.

So, as I come back around to the title - Why I Decided to Write This Blog - it's to make a contribution to the very necessary awareness campaign and in time, do some meaningful fund-raising, also helping support the Parkinson's community, including development of some ideas which put Parkinson's and music at an intersection. Much more to come.

I'm on a journey and invite you to join especially if you're at all interested in Parkinson's and music. Please subscribe - it's free!