Over the last few days, having received some pushback to my writing, I have been thinking about what to do. I must say that I have been absolutely touched by the response I have received. People have truly opened up to me and told me that they are reading what I write and that I should continue. The feedback is clear, and I really appreciate it. WARNING: They say you should be careful what you wish for. I do, however, want to say thank you! I guess I am now Pumped literally and figuratively but unlike times before I remain very firmly rooted to the reality of PD.
Before Parkinson’s, I was a pretty introverted person who kept his emotions well hidden. One of my closest friends once jokingly (well, semi-jokingly) described me as “an empty tin can.” That, I think, says it all. I would never have written a blog.
I took a decision early on in my fight against Parkinson’s to change tack and be open about my experiences. I am not sure why—I have no idea what possessed me. The truth is that I made a lot of changes in that period. In my pre-PD life, I would never have taken up yoga, run a 10k, tried acupuncture, massage, or a number of the many things I now do.
On the back of this, I started writing as a way of trying to maintain a sense of control over the narrative of my disease so that people would hear from me about its progression. It was my control freak side kicking in—a form of self-defense. It gradually started to make way for a more regular stream of conscious thought as I realized that for my friends, family, people interested in knowing what PD is, and for people affected by it, I had an insight to share.
Something has happened that kicked it into overdrive… I think an inflection point was the start of the Vyalev/Produadopa pump. It has so far, in the weeks since it was installed, truly changed my life (with the odd major blip), and in my gratitude and no doubt in the wake of the unleashed level of energy I suddenly had, I felt I had to speak out about my journey as one of the early adopters of a new treatment, and it has snowballed from there.
It is, on one hand, the dopamine and probably an outbreak of completely obsessive behavior. People who know me are challenging me that perhaps I am spiraling out of control. But it is not that. I believe I have discovered a few things about myself….
Firstly, I love writing—genuinely—at least at the moment. It gives me a way to process my thoughts and express myself. It is much more my style than speaking face-to-face with people as it is one step removed.
Secondly, I need meaning in my life. Being a ‘patient’ can be a very easy way of losing control—the doctors tell you what to do, you become physically dependent on others to perform basic functions, you gradually wither away. That—and the loss of dignity that usually comes with the PD package—scare me more than anything else. Writing is one way I can use my brain to give my world meaning. From a number of very personal letters I have received, I seem to be helping at least a few people—with and without PD—and it gives me very real satisfaction (which lasts a very short time as I don’t like praise). I guess that 25+ years in professional services—over 10 years as a partner of a big firm—have given me certain skills and experiences that I can call upon to communicate to people. I don’t know how much of an impact I can have writing blogs (when other people are doing research, medicine, and a thousand other valuable things), but in the here and now, I am finding it meaningful.
Lastly, I have the time. I can’t sleep (not because of the writing!) and wake up way too early—this morning it was 11:45 pm—yes, 11:45 pm. I run, do yoga, work more than a full-time job, and I still have hours to fill. TV, movies, etc., don’t give me any sense of enjoyment anymore—so this is how I am filling the time. Added to all of this is the fact that I have more than enough content to share—life is simply too crazy, and although I wish it was less crazy, at least I have stories to tell and opinions to give.
I am absolutely full of relevant topics to share as this experience has simply been all-encompassing, and I am seeing so much in my communication with other people going through similar but different experiences.
The world is dynamic, and none of us know what is around the corner. For now, the new pump has unleashed energy in me, and I am going to put it to good use—so for as long as it lasts—stay tuned and please share/pass on the link to the articles to people you think will benefit. As I said above – I guess I am Pumped literally and figuratively. While I am making the effort, I am keen to maximize it to reach as many audiences as possible. Of course—to state the obvious—none of this is for commercial purposes—any future books or writing will almost certainly be free of charge, and the costs of the blog I am very happily incurring because it is my hobby—or some would say obsession.
Once again, thanks!
