So when the new year hit I vowed that I would get up and moving again. That I would simply have to alter what exercise looked like for me. Instead of hard core bootcamps and personal training sessions that once were a ritual I would have to find things that I could do with my uncooperative body. So I started by hitting my treadmill. Usually walking but slowly was able to get running a bit. I started eating better and I stopped laying on the couch. Thankfully in less than 4 months I lost that 25 pounds and was feeling better. Still struggling with simple tasks that required my hand and bad days where I was crashing, but at least I wasn't feeling sorry for myself and I was moving, to the best of my 'new' ability. When the weather got nicer I started biking again, at first it was a challenge as my balance is a bit off, thankfully not as bad as some.
I have a silly little chant I have in my head when I'm having a hard time doing any exercise, On those days where I don't feel like getting up and moving or on the days when I am doing it but struggling hard and want to give up. I say to myself "Screw you Parkinsons" and as silly as that sounds it usually gives me a big enough push to keep trying. Some days I can't do anything but walk on the treadmill, some days are a bit better and I'm able to run a bit. I have been trying to get to 5k for months now and I still can't do it. My legs just don't seem to have it in them but I have continued to try. 2k is about my norm but I have hit 3.5 a few times on a good day. But it's not easy. I have to focus. It's not the same as before, I can't just tie up the laces and run. I have to focus on my stride, on my feet hitting properly and put a lot of thought into it so don't go off balance or tire too much. It's a mental game as well as a physical one, where as before all my body issues it was a thoughtless thing.
Yesterday was the PEI Parkinson's Society SuperWalk which happened across the country. I knew about it a few months ago and was reluctant to register for it or create a team given I hadn't been "officially" diagnosed and was just being treated for YOPD. But as my levodopa started to make my life a little easier and a couple of chats with my movement disorder neurologists nurse I decided to register. I did not ask anyone to do it with me, I simply created a team (Team Nat) and posted it on facebook asking for people who might be interested to make a pledge towards the walk or join my team if they so desired. The love and support from that was truly overwhelming! A group of friend and family started registering on my team and many people started to make pledges. I was getting emails almost daily telling me someone had sponsored me, or someone new had joined my team. It really was heartwarming, I had set a team goal of $1000 (not even knowing if I'd have a team) and figured that was pretty aggressive, setting a personal goal for $500. I'm thrilled to say that not only was I blessed to have 8 people join me along with my two girls that day, but also to have had 19 people there at the end of the SuperWalk cheering me on. Let me tell you my emotions were running high and yes I cried when I saw then all. It was a very emotional experience for me, it's been a long journey and well... it was just emotional. I can't quite explain it.
I struggled the last few weeks with some added stress in our lives, worse than usual insomnia and in turn a series of days where I was crashing. My body does not respond well to stress of any kind. As opposed to stress being typically a mental thing for most, now it is a very physical situation for me. If I am upset or anything like that you can physically see it in me. My tremor gets worse, starts from the shoulder down and it's very visible, where as on a 'normal' day I can typically hide it by tightening my muscles. But during a stressful time that is next to impossible. Those are the times or just on really bad days when I will sit on my hand to hide it or keep my hand in my pocket. Why I try and hide it I don't know, but I guess you just do. Anyways, to get back on track. When I first registered for the SuperWalk my goal was to run the 3K route that day. Hopeful that it would be a good body day. Well the week leading up to it was rough. Pain in my neck and shoulder that I'm often plagued with was severe, keeping me awake at night even more than usual. Physiotherapy & acupuncture did not help. And I was only able to exercise one day that week after not doing anything for the two weeks prior. I still woke up that morning with the intention that I likely couldn't pull it off that day, but I would at least try. Even if I could run just 1km at least I could say I gave it a shot. That typically takes me between 7 and 8.5 minutes to do. I was blessed to have three friends come that day willing to run with me, at my pace, to walk if I needed to and even had one offer to carry me if I needed it! Thankfully it did not come to that! I am proud to say that I did run the SuperWalk. In fact the four of us from my team that did were the only runners that day, we even sort of got lost on the route. We ended up doing 3.23km in about 26 minutes. I needed a couple of walk breaks and the last block I did stop entirely for a minute. My girls stopped with me and simply asked, what do you want to do? So, I put my earphones back in with Footloose playing and I started to jog again. I then shouted out "Screw you Parkinsons" and off we went and finished! It was awesome.
More so because I have struggled so much the last few weeks and this week in particular was rough. I guess adrenaline is a great thing! Because as uncooperative as my body was this week, somehow I managed to pull it off. I have no doubt it was because of those girls jogging with me, encouraging me and the others that were walking as part of my team. When we were near the end I could hear my sister (my biggest cheerleader in life) cheering and then I saw the big group of supporters and it truly was an overwhelming experience for me that I honestly don't know how to put to words. I had tears and I shook bad, and was hugged by people that loved me, and congratulated me and I had more tears... and well... it was amazing. So to that group of 19 people at the end waiting for me THANK YOU.... To the 8 people & my two girls that were part of my team because they wanted to be, not because I asked them THANK YOU... to the three girls who ran with me, one who does run, one of which hasn't been able to run in two years due to a hip problem and another that despises running THANK YOU.... To all the people that I know truly love me whole heartedly, those that have been there for me this entire journey I've been on, those that are genuinely concerned about me, those that call, text or email often to ask how I'm feeling and if I need anything but could not be there yesterday... THANK YOU... Because of those people and their caring thoughts and hugs and talks I've had with I feel like I am not alone. Because this journey can be a lonely one, but I am blessed to have a handful of people who I know are there for me, don't judge, don't assume and ask. And for that I am so grateful.
And I'm excited to say that I myself raised $810 surpassing my personal goal by $310 and 'Team Nat' raised a total of $1230.00!!! The Charlottetown SuperWalk raised over $30,000 that day! And I was proud to be a part of it regardless of what the future may hold for my official diagnosis or not. Time will tell, I'm off to Saint John again on September 19th, so we'll see what happens then. But I can say I am no longer nervous, no longer scared. I simply want things to be finalized, so I can continue to move on to more goals and hopefully more successes, whether they be small or large!