This is by far the most personal, sensitive, and possibly controversial blog I have written in addressing the subject of ‘my positives’. Why write it? I think this blog may speak to some people, both with and without PD, in a way they may not have considered. I am really putting it out there, but I have decided to do so as my form of coping (and writing this article really helped me). I also want to make the PD journey clearer to people—at least my view of it—and if it helps even one person, then it is worth it. (I am not translating this post because of the risk the nuance is lost).
Please note that having said that I wouldn’t dare impose my situation on anyone else. It comes from a rare moment of reflection, thanks to my slightly obsessive hobby of writing. There are some genuine positives I have taken from my time with PD which, despite all the downsides, are worth mentioning in at least one blog.
Let me be clear – I would never ask for PD or wish it on a single person. But having been diagnosed with it, I will say that for me (and me only), there have been a couple of genuine positives which I can at least put in the bank.
I have to say three MAJOR caveats before addressing this pretty sensitive topic of positives.
- No comparisons to other well-known illnesses: I am not going to sit here and write that “it could be worse” because I don’t actually believe it. Yes, there are always worse things in life, but PD can and will be pretty terrible. At specific times in my PD life, I would trade it with some of the things other people mention due to the long-term, never-ending decline slope of PD. More importantly, PD doesn’t actually preclude me from other things either, so it is not a matter of A vs B in life.
- No silly positives: I am also not going to be flippant and point to what I call silly positives such as the fast track line in an airport because of the walking cane or a trump card when not feeling like going to an event. These are all ‘false/fake’ positives in my eyes. They are good for a joke with friends or the kids at a point in time, but they are cursory and so minor and fleeting as to be pretty irrelevant. (And to be honest, my kids have sussed out the ‘I can’t do this because I have an incurable brain disease’ trump card once it was used the second time.)
- Not all the time: I won’t always agree with myself on this, so I reserve the right to rewrite or edit it at any future time.
So Positives – what do I mean?
Slap around the face
I have no idea what would have happened had I not had Parkinson’s – it is impossible to predict, but it was, in hindsight, not looking good. I was a workaholic (I would never have admitted it at the time, but it was true). I was dedicated to my job 24/6 (not the Sabbath when I was often too tired to do anything else). It wasn’t just the time; it was the focus. There is no question that I loved my wife and kids to the end of the world and back (and back again) as I do now, but I was obsessed with work and completely overdoing it. I remember thinking nothing of going from TLV to LA for a working week, coming home for Shabbat on the flight back to Israel that landed on Friday, and then heading back to LA on Saturday night. Or going to NYC for a 1-hour meeting. I joke now that I could have measured the impact of this life in ‘guilt offering gifts to my kids,’ which I know fuels duty-free airports around the world.
It wasn’t travel or work – that was a symptom – it was the emotional and health balance in my life. Like all of us, there are plenty of justifications for it – we have to earn a living, I am saving for the kids’ future, etc., but the balance was all wrong. By the way, it hasn’t completely and totally changed – it is a bit more balanced but I still often work and travel far more than I should – it is all relative. As recently as a year ago when making changes in my work balance to reduce stress one of my bosses told me “We are not the problem regarding work/life balance – You are” and he was right and I so respect him for telling me that. So it is not binary 1-0 and I am far more aware than I was.
It meant other things as well from a health perspective. In the months and few years leading up to PD, my blood pressure was simply out of control. I was on an ever-growing number of pills, but at many points before the diagnosis and before the COVID that came just before diagnosis (you can read about that in my first blog post), my BP was very high (and I mean numbers consistently starting with 150/160, and I am not going to divulge further). When admitted for what turned out to be PD 9 days later, it was at 170 because of the stress.
I did not exercise of any nature, and I didn’t eat well. Like others, from time to time, I tried this and that for a couple of weeks/months, but it wasn’t serious. As I so often joke to people, when diagnosed, they told me it all had to change big time, and I had to embrace exercise. We ended up having the following discussion – You must try Yoga – NO, Tai Chi – NO, Dance – I’ll do Yoga. I had no idea what Yoga was.
Put simply, with my faith hat on, I think PD was, in some ways, a last call from Him above (and this is just my personal view which you can feel whatever you want about) to finally sort myself out. Sort of – You’re not listening to me when I tell you to slow down, reorient, etc. – Try this!
Nearly 5 years in (and many horrible experiences later), I do think this is the key positive for me of PD for purely personal reasons – it slammed me to the ground and made me look at life in a completely different way. I simply had no choice. I wanted to walk my daughter down the aisle, I want to be with my wife and kids, I want to live…the only choice is to fight and rebalance, and gradually I have made steps to do so.
That, for me, is positive 1-10. Now I don’t think everyone will share the same view, but (a) it is my blog and (b) I have heard people say similar things to me.
Opens the mind
There is no doubt that for all the damage it has done and will do, PD has opened my mind to other things – to mindfulness, to creativity like drawing/writing, to sport, and also to thinking about life with a different perspective. It has given me much more clarity over what I think is important and, in many ways, has given me a more balanced, measured view of things which has, in some ways, sharpened my instincts alongside the decline in other areas. Don’t get me wrong – I am still a pain in the backside to all around me but a slightly more mature one maybe, well sometimes.
A little less self-centered
This is not a slam dunk point, and some would argue with this. This blog is an example of the debate – is it self-centered or is it because I am trying to help others – you could for sure argue both ways. There is, of course, the huge danger that PD makes a person more self-centered – suddenly everything is centered around him or her – the diagnosis, the pity, the attention, etc. It is true to an extent, but it also gives another perspective to me anyway, and I think I have become much more aware of the huge challenges other people face and have become much more empathetic of other people’s challenges. I think some other people notice it.
Humor and perspective as positives
Call this ‘Gallows Humor” if you like. My wife and kids would also say it is not at all funny humor, but I do see more amusement, humor in things than I did before. I sort of see the funny side of life a bit more, as I also see the dark parts as well. Maybe it is the dopamine or just the fact that laughter is a coping mechanism. I for sure laugh more than I did before. I also cry more, but this article is focused on the positives.
I think it is part of the perspective topic that really covers the items above. One other aspect of this is a sense of priority. I value some things differently than before. I think it is something that comes with the multi-faceted aspect of PD. When you have 20+ symptoms and basic things don’t work, for example, the fact I simply can’t write with a pen or I can’t smell, you tend to see things a little differently with a broader perspective than getting caught up in the minutiae of little things.
Know your enemy
I have friends and colleagues who are up against an unknown enemy – in the form of knowing something is not 100% but they can’t tell what it is, nor do other people know what it is, that is eating them. The minute I knew my diagnosis, there is an element of comfort and certainty that comes from knowing who your enemy is. It is a mindset. I know what I am fighting, there is a protocol, I can build a strategy and also prioritize my time and attention.
Positives – Yes… However…and in summary….
Many people on reading this will think that I didn’t need a diagnosis of PD to address the issues above and they are right. Of course, they are right. Everyone can adapt their life in theory but PD is heaped onto life and the truth is that many people try to make big changes, take up diets/hobbies, etc. but fall at the first, second, or third fence. I think overall PD has forced changes in me which are positive and I need to appreciate that whilst not for a second forgetting the unbelievable challenge it poses.
In summary – is there any chance on this planet that prior to PD I would ever have run 10k, done yoga every day or written a blog post as sensitive as this – NEVER. Just a shame I had to get PD to do those things. I think that is the summary.
It took quite a lot of mental effort to write this so if you have comments esp positive 🙂 (half joking) let me know if it speaks to you (totally optional of course) and please share
