Three years ago, on October 1st, 2012, I was provisionally diagnosed with Early Onset Parkinson's Disease. I wrote about this before, but now, three years on, I want to talk about how I think about my condition, and how it has, or, more accurately, hasn't affected me.
I've had PD for over three years now. Although I didn't see a neurologist until October, I had had tremors since March or April of that year. In those three years I've enjoyed my job, got back to swimming, drew lots of comics, played video games, read books and did lots of craft stuff, both with the kids in school and at home. Oh, and I became a dad. PD hasn't caused me any issues in anything I do. Sure, the tremor is annoying at times, but there's no loss of strength, so I don't have to worry about picking up an increasingly weighty baby! The only difficulty I can even struggle to think about is if I'm asked to write a note without something solid to lean on, say just using a binder held in my left hand. I can still manage it, but it won't be pretty!
Story Break: During the first year or two, I would occasionally blame anything and everything on PD. One time, while we were on holidays, I noticed my tremor was much stronger one morning. I quietly worried about it for an hour or two until Claire noticed that something was up and asked. When I explained, her reaction was "Or maybe it's the four cups of coffee you had over breakfast this morning." I do drink coffee, but not usually that much. We were out having a lovely breakfast and the server just kept refilling my cup. Mystery solved!
Since then, I've stopped blaming PD for everything. Now I blame those infernal cosmic rays from distant alien galaxies trying to alter our DNA for the coming invasion...
Some things will change, eventually. I might not be able to thread a bead for the kids some day. I might find I can't draw a neat circle one morning. Maybe I'll have to carry cups of tea one at a time, instead of one in each hand. All that's okay too. And they'll happen one at a time, not all at once, like the initial diagnosis. I'll deal with them then as they come.
My tremors get worse when I'm stressed, excited, tired, hungry, basically extremes of emotions or conditions, so I've really started to be more aware of my physical condition independant of PD at any time first and foremost. I try to eat well and regularly. I try not to have too much stress in my life, and get plenty of rest. You'd think that would be difficult with a six month old in my life, but Ada is a great night sleeper most of the time, so I usually get a good night's sleep.
The excitement bit is harder. I mean, for me, I get excited at movies, reading a good book, telling a joke, playing with the kids, all that. Heck, I get excited staring at paint dry. I just have to accept that I'm going to show my excitement more than others. That's not really a bad thing, in my opinion. Oh!! Taking photographs can be a bit of a pain, especially at exciting moments. Thank goodness for digital cameras. I just quietly delete all the blurry ones, as if they never happened. I had to let some of the hospital staff photograph the birth of our daughter, which worked out great in the end, as we got some incredibly unique photos to share with her on her 21st birthday/wedding day.
One great bit of advice I was given by my neurologist (I honestly love that I can say that. I have a neurologist! It's like I'm living in a TV show!) is not to let anyone decide for me when I need to start taking medication. Not doctors, not my neurologist, not family or friends. No one. I can choose that for myself, and to date, I have chosen to remain drug-free. I don't really need it yet anyway, the tremors are still pretty much limited to my left arm three years on.
The medication is getting better and better every year, but it's still not great. It has some long-term side effects, the funniest of which is tremors. Yup. The medication for PD causes tremors. Bananas! Anyway, the longer I can go without taking the medication, the longer I'll go before having to deal with the side-effects. Or, by the time I do start taking it, maybe I'll never have to deal with the side effects! One of the reasons for them is that the medication is a pill, so it's strongest when you take it and trails off over time, causing an inconsistency in the effects. This leads to peaks and valleys and the body has to try to compensate for that. They're currently working on a slow release delivery method, something planted under the skin that would release the medication evenly over days or weeks and just need topping-up at regular intervals. Cool!!
There is some advice that was given to me that I haven't taken myself yet, so read into that what you might. I haven't gone to any support groups or meet-ups for people with PD. I know that it's good to talk about these things with other folk and see how well they're coping. But instead, I blog. I believe that being open and honest about PD, or anything really, is great. It shows others that whatever they're dealing with, they're not alone, and sometimes that's how you feel when you get a diagnosis for something, not just PD. I was taught that by friends who survived cancer, and other friends who went through IVF treatments to become pregnant as they talked openly about what they were experiencing. I haven't had to deal with either of those, but their stories helped me with my diagnosis, as well as during the two years we were trying to become pregnant without success.
10% of the population will be diagnosed with PD at some point in their lives. 10%!! That's huge! One in ten people!! If that was a fatal condition, it would, literally, decimate the population! But it's not fatal. It's not even entirely life-changing. It's manageable, and getting more manageable every year.
I plan to live a long time yet, and thanks to medical science I'll be almost as active and productive as anyone else. I'll be a good friend, a good husband, and, hopefully, a good dad for a long time yet.
Post Script: This blog was inspired by a question from a friend. I'm so lucky to have great friends, and if this or anything else raises questions for you, feel free to ask me. I'll be delighted to answer them if I can.