Acceptance

It’s been a while since I last wrote of my experiences with Parkinson’s, so I think it’s time for another Parky Perspective. I’m doing well. In fact, the more time goes by it seems I’m getting better at living with Parkinson’s. In my estimation, about half of that can be attributed to simply accepting it. By the time I was diagnosed I had already experienced its cunning and twisted nature. A nature that seemed (at the time) so full of ill intent so as to be almost vindictive. I was already well familiar with the physical and psychological pain that Parkinson’s exacts upon its hapless “victim”. Once one fully acknowledges it, accepts it, one can move on. And I have. But as bad Parkinson’s is, I’ve come to realize that we are all destined to experience tragedy, to be the “victim” in one form or another. Terrible accidents, terminal illness, the death of a loved one, these are indiscriminate realities of our short existence. As bad as Parkinson’s is, I’m reminded all the time of how much worse it could be. The bitter truth is, none of us is getting out of here alive after all. I don’t really see myself as a victim as really we all star in our own personal tragedies. In a sense, Parkinson’s almost gives me a more accelerated perception of how fragile we are, how little control we actually have over our destiny. As a result I tend to sweat the small things less and bask more fully in the joys of life. Or at least I’m working on that in earnest. Those of you that I work with may have noticed a bit of inconsistency at work. Some days I blast into the workday like a flaming meteorite, getting things done, ready for anything. Then….not so much. I have no energy, I don’t want to talk to anybody, I’m far less productive. I want…no I NEED to hide away and rest. Parkinson’s can move in and sap away my energy alarmingly effectively. Those are the times I barely can make it home. There’s a reason many Parkies go on disability. It’s not easy to manage a work life when it can take everything you have, and then some, to manage your own body. I don’t see myself going on disability anytime in the near future. I like the mental stimulation of work too much. I like the people I work with. And yes, the money is of course important too. If you are one of those people I work with, I thank you for your patience with me when I’m “uber Parky”. Your understanding when I describe the crazy symptoms of this disease. You make me feel accepted and I appreciate that.I say I’m getting better at living with Parkinson’s and that’s true. But it’s still there. At any given time it could be nagging me with stiffness, slowing me down, causing my leg to drag, quieting my voice, making it difficult or damn near impossible to walk, a large array of potential symptoms….or not. I never really know. But because I’ve accepted it I don’t worry too much about it too much, at least not yet. I still have a few arrows in my quiver. Firstly, the medication.Medication is of course an unfortunate reality of living well with this disease. And as time goes on I’m introduced to more of them, Carbidopa-Levodopa, Neupro, Selegiline, Rytary, …… I’ve tried them all and then some. I’m constantly tweaking dosages, timing, learning to “micro-dose” at just the right times. I frequently communicate with my Movement Disorder Specialist to review how the medication affects me and if I need to make any adjustments based on suboptimal symptom control or the emergence of unwanted side effects. In the back of my mind there is often the question of if I should take more meds as you see, the symptom control is never perfect 100% of the time. But I resist the temptation. It usually seems like the right thing to do, though many will tell you that there’s no harm in it. Maybe I’m just scared of hopping on the typical cycle of taking more and more meds. A slow process to be sure, but one that doesn’t end well. As if I have any choice in the matter. With Parkinson’s, one understands quickly that control is an illusion. However, there is one thing that gives me some control. Exercise.It’s a good thing I like to exercise because movement is hands down the best medicine for this disease. Some fellow Parkies and I started a Facebook group called Parkies Pulling for Parkies (PP4P). PP4P is a place for PwP who use strength training to combat Pd symptoms to post about their progress in training the deadlift. A lift that I fell in love with for it’s gritty, raw test of strength. I might have trouble walking but dammit I can lift some weight. And a crazy thing seems to happen when I do. The stronger I get the better I seem to be able to handle the disease. I move more fluidly, I feel better. I’m working towards my goal of deadlifting 450 lb by April. I post weekly updates on my progress to the PP4P group page. Finally, let me let you in on a little secret. When you have Parkinson’s, it’s almost like a free lifetime pass to the dopest, most insane nonstop rave party you can imagine…..ok it’s not quite like that. But there are a lot of really cool Parkies and it’s kind of awesome to be a part of the exclusive club. Every Parky is unique and I’ve enjoyed meeting each and every one of them. Parkinson’s is definitely a terrible disease to have, but it sure is nice to have people you can turn to who understand what it’s like, to encourage you. The social aspect is an unexpected “perk” that simply makes Parkinson’s’ easier to live with. To my fellow Parkies: Thank you for being there for me. There are also certain individuals who are not Parkies themselves but are doing great things to make the lives of PwP better. I also thank you. I won’t name names but I think you know who you are. So there you have it. I guess to summarize I would say I’m getting on with life. That’s all anyone can reasonably be expected to do. Have a good night!