It occurs to me that this new blog venture has exposed me to a whole new group of people who have no idea who I am or what I’m all about. My name is Josh Robinson and I have Early-Onset Parkinson’s Disease. I’m a 40 year old divorc(ing) father to two daughters, a stepdaughter and a stepson all ages 18-20. What I am trying to do is share the story of how this disease affects my life. I share this unfiltered. Follow along and you’ll see what I do to fight to maintain as much of my quality of life for as long as I can. I want you to see all of my losses and all of my victories. What I really want is to make this second half of my life, alone with this terrible disease, a story that will inspire others. Not because you’ll see me beat this thing, but because you’ll see me FIGHT this thing. Parkinson’s is not terminal in itself but it is progressively debilitating and incurable. I’ll say that again. We may know how this game is going to end but that doesn’t mean I can’t take it to extra innings.
Now back to the background. I found out that I had Parks in March of 2013. I had developed a limp in my right leg and my right hand started getting clumsy and having trouble with fine motor skills. When the occasional tremor started taking over the hand I went to the web. That first research session I knew. I saw my family doc, and as a poker player, I read the dismay in him as he referred me to a neurologist. He knew too. I’ll apologize to people with these afflictions for saying this, but I had been hoping for a brain tumor, maybe even cancer, just not Parkinson’s. I can beat the others and I’m not afraid to die, but I can’t beat Park’s and I don’t want to waste away. Well, after the Neuro confirmed that it was a very rare instance of Early-Onset Parkinson’s, I was lost… for about 20 minutes. I got a cheeseburger and sat in my truck in a parking lot while the mission statement for the second half of my life started to take shape. I didn’t cry and I never will. This disease may have taken a lot from me but I will never give it tears. The way I see it, I haven’t so much been put on a clock as this clock that is ticking away my life has been made very visible and loud. In that respect I’m no different from you. We all have clocks ticking and we’d better be aware of them. I like to say that I’m fighting for 7,447 more days of QUALITY living before picking up the crutches or having a seat in the wheelchair. 7,447 is roughly twenty years (and those numbers all mean something to me as well) and that’s a BIG goal, but hey, this is the fight of my life right?
So how exactly do I fight? For me it’s exercise. OK, the term exercise is a bit tame for what I try to do, but they do say that exercise is the best therapy for it. I do take my meds too and I’ve got borderline insomnia to prove it. That’s another little tribulation but I’ll get back to that in a later post. What I was ORIGINALLY working towards was competing in the Crossfit Open but that’s been postponed twice now due to injury as well as already losing the ability to run for distance. This project originally started off as a facebook page (https://www.facebook.com/robinsonvs.parkinsons , feel free to send a friend request) with me running a Hero WoD named Clovis on Christmas day of 2013. Clovis is simple, run 10 miles and do 150 burpee-pullups. Simple but CRAZY for someone without a lot of running experience but I did it. Ran 1 mile, did 15 BPUs and repeated 9 times. It was an amazing way to start this journey, but fast forward to this year and Christmas day 2014 and I’ve had to pretty much stop running for distance because my right leg hits SO hard I get back spasms. I tried to repeat Clovis again but this time I didn’t make it 2 miles. That is scary progress. But I don’t give up easily so if Parkinson’s takes away the Crossfit Open I guess I’ll just get into powerlifting. With the help and encouragement of my friends at the gym I have entered the Pacific Coast Open Powerlifting Meet with them. To tell the whole truth, I’ve got my eyes on state records in the squat at 523lbs and the deadlift at 567lbs. Not at this meet though, I just had bicep surgery in July (another tribulation for a later post), but eventually I will get there. That’s the example that I’m trying to make. You don’t have to accept what life takes away from you. Instead focus on what you CAN do. I can’t really run anymore but I’m still strong, so I’m going to try to be one of the best 220lb Master’s Division lifters in the state of California. Now I’m not saying everyone should step onto the lifting platform and go crazy with 400lbs on your back. But just MOVE. If you have Park’s or MS or even if life has just crushed you with depression, just MOVE. No matter how small your boundaries might be, push on them and they will expand. Fight your affliction not just to win, but just for the sake looking yourself in the mirror and knowing in the end that you tried, and that your kids saw a valiant effort. It’s a lesson they will carry into their own lives. You’ve always said you’d do anything for them right? Show them. You don’t have any time to lose. None of us do.
Thanks for sticking through a long-winded post and welcome. I’d like to help as many people as possible so feel free to share. Be well people.