In Which I Have A Minor Revelation

I need to start making a bullet list of stuff I can write about quickly at the end of the day. Have a cheat sheet of short topics that aren’t all about my kids. Like, I have a bunch of ideas for longer format posts... which I just realised I could write over several days and still maintain my Buck Fifty streak. I just wouldn’t be posting daily. That’s the whole point of the challenge. D’oh. 

I do all my writing so far at the end of the day, and the number of typos I have to go back and fix would be embarassing if I didn’t have a chronic, progressive, degenerative neurological disease that causes my arms, hands and fingers to tremor and often not react the way I want them too. As it stands, I take it as a challenge! Still, I should probably endeavour to get it done earlier in the day when I’m less shakey, but then I have two small kids battling for my attention. 

Okay, new plan. I might not always post daily, but I’ll stay writing daily. I’ll post the longer format stuff when it’s ready, and shorter posts as I feel the urge to adress stuff. 

Nice. I started todays writing with no idea what I was going to do, and end it haivng a plan for at least part of the rest of the month. Score! 

Float Like An Elephant, Sting Like A Letharic Butterfly

Last March a new boxing gym opened nearby. Boxing is apparently one of the great exercises for Parkinson’s, so I decided to join up right away.

I decided right away.

I actually joined about two months later.

I hadn’t really exercised properly since Ada was born. Before then I used to swim regularly. Since Ada arrived my exercise was running to stop her doing something stupid, or carrying her away from whatever stupid thing I couldn’t get to her in time to stop happening. Kids.

But I decided to try my fist at boxing, and fell completely in love with it. By the end of the first week I owned two pairs of my own wraps, and by the end of the first month I had my own gloves!

I joined Raincity Boxing around the start of May and after the first class I knew this was something special. The gym has an incredibly friendly and supportive athmosphere, lead by owner and head coach Sean Sung, who is just one of the nicest people I’ve had the pleasure of meeting. His classes are always fun and funny. This makes for a really inviting class, regardless of fitness level. All the other members are chatty and supportive, encouraging each other to throw just one more punch, or reach for one last push up. I heard another member describe it as a family, and couldn’t agree more.

My goal when I joined Raincity Boxing was just to get fit, but I quickly had to amend that to “get fitter”. My cardio improved almost over night. I started to notice that I was getting stronger, and Claire pointed out that I was developing a rather nice set of abs. All this, and I was having fun!

I’ve never been one for exercise. I was always slim and never really worried about my weight. When I swam, it was a chore, something I had to get up early to do on my way to work. I did it, but mostly because they already had my money, so I might as well use it. Even then, I only did the bare minimum, two dozen lengths and out. I never pushed myself to do better. I was onctent to just swim for 30 minutes and get out.

But this was different. My plan of just going once a week to start lasted less than the first week, and I was going at least twice a week right away. It wasn’t long until I managed to squeeze in a third class, and I was thrilled the first time I made it to four classes in one week! It had been a long time since I was this excited about something that didn’t involve pixels or tiny cardboard components. Even on the days I didn’t feel up to it, going anyway always felt great. As soon as I walked in that door, everyone was happy to see me and I was happy to see everyone.

I’m never going to be a boxer. My Parkinson’s means that my muscles don’t react as fast as I’d like them too, and with limited force. My coordination is poor, and I struggle to put together combos of four or five moves. I find it diffficult to perform the explosive, burst moves that boxing is known for. And I hate wearing contact lenses, so my experience in a ring with a sparing partner would be something along the lines of watching a fuzzy black blur hit me in the face over and over again.

But I don’t care. I’m having so much fun. I love every class. I love meeting new members and welcoming them in. I love getting just a little better every class, one more pull up, just a little faster than yesterday.

That’s all I need. Not a straight 100% improvement, just a whole bunch of 10% steps.

Still Shakin'

Long time readers know that I was diagnosed with Early Onset Parkinson's Disease in late 2012. When I first bogged about it in October 2013, my intent was to post about it at least once a year, on October 1st, the anniversary of my diagnosis. Clearly, that has not happened.

In fact, if I'm being honest, my PD is one of the reasons I haven't beeen blogging more. Or, more accurately, I'm using it as one of the reasons. I've regularly told myself that my tremor makes typing with my left hand too awkward, and while it is partially true; the tremor does make it more awkward than before I had it; it is, on the whole, bullshit.

The persistant tremor does not stop me from typing, and never has. Sure, I sometimes double type letters, miss a letter here or there, or transpose two adjacent letters in a word, usually from the left side of the keyboard, but I was never the fastest typist anyway, so it really hasn't affected my overall productivity. Using my PD as an excuse to not write more often is just that, an excuse, and a lame one at that.

Since my diagnosis, my condition has continued to progress very slowly indeed. I'm still not on medication, nor do I or my neurologist feel that I need to start any time soon. My left arm still has the noticable tremor, but without lose of strength, and my right arm doesn't show any signs of developing one as of yet. My left leg gets jittery when I get excited, but my walking and running isn't affected at all.

My neurologist has increased the frequency of our visits from 12 to 9 months apart, because, in his own words, it's going to get worse eventually, so we should watch out for it. Despite this, my last two visits lasted less than ten minutes each, and he was very happy with my progress. Or lack of progress, I guess.

So, all is good in the world of Denis and his stupid brain. Yay me.

Shake It Off, Shake It Off

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.