Last year just a month after I had officially been diagnosed with YOPD and 6 months after first hearing that they thought this was what I was dealing with and treatment started I ran 5K in the PEI Marathon. It was hard, but I trained as best I could and set it as a goal for myself. It was an extremely emotional event for me and crossing the finish line (well even before) brought me to tears.
I decided to try to do it a second year. Now don't get me wrong I realize it's 5K, it's no half or full marathon, but it sure feels like it for this body of mine. I set out like last year to train, never intending to run the full distance until the day of because my body maxes out at 2.5 or 3K of running on a good day. To run 5K is pushing myself past the limits and causes a considerable crash for days afterwards. None the less I still wanted to say "Screw You Parkinsons, I can still do it!" However, training did not go well. It was clear to me that although I've worked very hard to stay active and slow progression things are getting more difficult. I can't run as fast or as far. In fact many things in my daily life I find I'm not as good at or am getting slower at accomplishing. Admittedly small changes and I'm grateful that they are minimal I still notice the difference. I tire a lot more easily than I did a year ago even with just day to day puttering around. I'm closely watching for these changes because I know what it means & watching for them can be a bad thing. It allows me to see the negatives when I really do strive to stay positive. It's frustrating as hell and I admit sometimes gets me down in the dumps. However, I committed to running this event again and accomplishing this goal and I wasn't about to let any of those things get in the way. I found the stiffness around my ankles particularly tough and it was causing pain when I would try and run. So most of my practice runs resulted in only getting about 2K with many walk breaks and ending it off with me being annoyed. So the week of Marathon weekend I decided no more practicing. I would save as much energy as I could and rest and take care of the pains and hope for the best that morning.
I was so grateful to have my cousin Jenny travel from a different province to come and run with me. She was the perfect partner because she's a personal trainer, so I knew she could help me finish. I won't run that far alone because I need someone with me to help push me to finish and make sure I'm ok too. My dear friend Lorena who ran with me last year sporting the same custom made "Screw You Parkinsons" shirt had decided to try her very first 10K, which was much to far for me. She still sported her same matching shirt she wore last year and she started with us and then after a couple of kilometers branched off, not before stopping to give me a hug where we exchanged some "you got this"! It was harder than last year, but I did learn a few tricks from doing it once before and I made sure I walked the couple of hills on the route this year to save my steam. I most definitely had more walk breaks than last year and I was slower. However I said the day of that as long as I finished and ran at least 60% of the course I'd be happy, but that if I could finish it in 40 minute I'd be ecstatic.
Well, I finished, I did walk some but ran more and I was able to finish with my cousin by my side in a time of 38:21, so yup, I was pretty ecstatic! My father and my two sweet girls were there to greet me at the finish line and yes there were tears. Much to my surprise my tremors were not as bad as they were the year before although definitely present and I'll admit despite the emotions and excitement that I completed it I would be lying if I didn't say I was happy it was over! Ha! Ha! I could not have done it without Jenny to keep me focused and motivate me right to the end and words cannot express my gratitude for her being there for me. I was so excited to stand at the finish line and cheer as loud as I could when I watched my bestie Lorena cross the line from her farthest run ever in 1:17:46! I know she was (as she always is) proud of me but I was incredibly proud of her too! Way to go girl!
I can honestly say that as of this moment I doubt that running will be part of my regular activity anymore. I'm simply finding it too hard. However, I won't say never just yet. Regardless of if I do it again or not I'm extremely happy that I could add a 2nd medal to my bedroom mirror to look at everyday and remind me not to give up. After all I never thought I'd have one! Regardless of the fact that it may be harder and I may find I'm a bit slower at things or finding them a bit tougher that does not mean I will give in, give up or lose my determination to keep trying. I know from my 3 month break from exercise after surgery last December just how important it is. I know the studies are correct when they say it can slow progression and make your body work better because I stopped and I found out just how uncooperative my body was during that time. So no matter what type of activity I do I will do something and I will stay as busy and as active as I can for as long as possible.
So for all my fellow Parkie friends out there set yourself a goal and achieve it! It doesn't matter what it is perhaps it is simply to commit to going for a walk three times a week, just do it! Try it for a month and see how much better you feel emotionally and how much better your body works. Find something that suits your abilities and just get off your butt and keep moving!