by guest blogger John Cornicello, a Seattle-based portrait photographer Cornicello Photography and a person with Parkinson’s
It all started a few years ago. I was working for a well-known software company. My job had me at a computer, typing, most of the day. I started noticing some “issues.” My left hand was becoming less accurate — DOuble-caps, repeating letters, things like that. I also noticed that my left arm was pulling in towards my body when at rest and it didn’t move/swing as I walked. My piano playing had been actually getting better for a few years, then all of a sudden it started a dive, too.
My first thought was that I suffered some sort of mild stroke. I got a referral to a neurologist, had an MRI, and things looked good. He had me do some basic movements. Then, as he observed me, he suggested that I might have Parkinson’s. I had no tremors. Just the stiff left arm and some cogwheel type of movement in my left wrist.
I had already been taking Ropinerole for restless leg, so we didn’t change anything there. My diet has never been that great, so my wife and I tried to go radical (for me) for a few months with no sugar, carbs, or gluten. I did lose about 20 lbs very quickly. However, I was starting to get some tremors in my left hand. After three months, I went back to dairy and gluten but have managed to keep away from sugared soft drinks.
Concurrently with all of this I had been photographing for a circus school here in Seattle. SANCA is the School of Acrobatics and New Circus Arts, one of the largest such schools in the world. I became friends with the owners and at the end of a benefit show in February 2015 I casually mentioned that I had Parkinson’s and asked Jo Montgomery if she had ever worked with Parkinson’s patients. She said she had not, but that I should stop in at the school next Monday. And I’ve been there just about every Monday, since.
I was 57 and pretty sedentary when I started this. Jo started me up slowly with stretching exercises. And then gradually started asking me to try more activities. My initial reaction to most of these has been, “You want me to do what? OK, I can bounce on a trampoline and do some jumping jack type of movements, But now you want me to do a seat drop? And then come back to a standing position?” I dreaded the trampoline for about 2 weeks.
Then it clicked and has become a favorite part of our routine. Next came walking on a balance beam. About 3″ wide and 6″ off the ground. More difficult than expected, but not so bad. I could do that one. Until one day she suggested a tight wire instead. A steel cable about 1/2″ or so wide. Barefoot, Jo would be holding one wrist as I walked back and forth across the wire. I never measured it, but I’m guessing it is a 12 foot distance. Amazingly I did it. And I enjoyed it.
All of this has built good core strength and improved my confidence.
So next came juggling. I’ve never been able to juggle. Maybe it is from lack of discipline and practice.
But I try. Balls, clubs, rings. On my own, I’m really bad. But I found that I can toss 2, 3, or even 5 rings with another person. I believe this routine is helping to make new brain connections that might help with Parkinson’s.
Then back to stretching. When I first started I couldn’t move my left shoulder. I would hold my left arm out to the side and grab a bar and tell it to move up/down and forward/back. And nothing would happen. I could tell my right shoulder to make all sorts of movements and it would. But the left shoulder would just sit there, completely ignoring my commands. I don’t know if is the medications (I started seeing a movement specialist in June 2015, and started Carbo/Leva in September), or all the other exercises, or a combination, but my left shoulder is finally starting to follow instructions and move around in circles when I want it to.
We also do some strength training by doing pull-ups on a trapeze bar and an exercise where I grab a bar above my head against a wall and pull my knees up to my chest 20 times.
Outside of circus school I have set up my home “triathlon” routine where I do a 30 minute routine that consists of a mile on a treadmill, then spin at 80-90 pedal rpm on a stationary bicycle for the balance of the 30 minutes. Then I take a shower.
All of this has helped me maintain a healthy and positive attitude. I consider myself lucky that my tremors are mostly mild and confined to my left hand so they don’t affect my photography. Yes, I’ve started using a tripod more often, but not all the time. I do worry that my left hand tremor might be a distraction to my subjects if my hand starts banging against my tripod. But I do explain the situation if that happens and all seems good.
This past week I found out that one of the members of SANCA’s board of directors has been diagnosed with Parkinson’s and she has joined in on the Monday class. Our first try at juggling rings with each other went remarkably well.
Some days I wonder if I should be more concerned with my Parkinson’s. But so far I have managed to maintain a very upbeat attitude. I really look forward to both the SANCA and the home workouts. And I am somewhat amazed as I learn about more and more friends and colleagues who have some sort of tremors, be they essential tremors or Parkinson’s. This makes me have hope that more people will be learning about these issues leading to more research and the possibility of cures and even prevention. In the meantime, I am now starting to think about boxing lessons with a program like Rock Steady Boxing.
Thank you, John, for sharing your story with my assistant and blogging partner, Gloria Hansen. You are very creative and we applaud your unconventional approach to exercise, which we know is the best medicine for Parkinson’s. — Margaret Tuchman, President of The Parkinson Alliance