Dealing with Petey
After living with Parkinson's Disease for 14 years, UNF professor becomes proselytizer for exercise
I first met my friend Petey in 1999. I was reading the newspaper in my kitchen, and I noticed that when I took a sip of coffee, my hand shook as I replaced the cup on the table. At the time, I didn't think much of it. I figured I was just tired.
But, during the next month or so, it happened again and again. My doctor said he had a suspicion about what it might be (he said at least I didn't have ALS, a horror I hadn't even thought about until he mentioned it). He sent me to see a neurologist, who confirmed my fears with a diagnosis of Parkinson's disease (PD). I felt as if it were a death sentence. My wife and I eventually called it Petey, my lifelong friend who simply moved in and made himself at home.
Like many other newly diagnosed sufferers, I avoided my shame by not telling anyone about it for years. I hid behind excuses of being cold (in Florida?) or nervous as a way to explain my tremor. That worked for a while. But because Petey is a neuro-degenerative kind of guy, my symptoms slowly got worse.
It's kind of like being old before your time, as many of the symptoms are what one associates with old age: the stiff, slow movements; the shakes; the "Petey shuffle," which I liken to prison inmates walking with the footcuffs on. Watch me, and I'll show you the fun you'll be facing 20 years down the road, when you hit actual old age. For me, 60 wasn't the new 40, it was the new 80.
It reached a point that was the proverbial elephant in the room, so I sent family and friends an email that explained what was going on with my body and the shakes and weird movements. I asked everyone to understand that as a natural introvert, I was going to need them to reach out to me a bit, at least until I learned to accept Petey in my life.
I slipped into a bit of a funk and began to see a shrink and a psychologist (hey, at least I was getting out of the house) and added — unsuccessfully — a series of anti-depressants and/or anti-anxiety drugs to my list of PD prescriptions. I tried them all. Paxil, Lexapro, Wellbutrin, you name it — nothing seemed â€¨to work.
It seemed as if abilities were being taken from me one by one. I couldn't run any more and, heck, I've been a runner since before they had running shoes. Then, walking was taken away, and I began using a cane for balance as I hobbled from place to place. Play the guitar? Forget it. Design work? Nope. Write? I still have to go back and edit out the double and triple letters I routinely type because of the tremor in my left hand. Heck, even reading was rough. Have someone shake your book-holding arm back and forth while you try to focus on the words and you'll get the idea.
I was miserable and heading downhill. This is when my wife, Suzanne, stepped in and took over. She saved me by repeatedly dragging me to her yoga classes. I disliked it at first, but the instructors were wonderful and accepted me for who I was. This dragging to classes continued until I felt confident and strong enough to begin going on my own. I even went to the classes when I had to use the cane to get in and out of the building. But I liked the classes and was doing fairly well, and it felt good.
With Suzanne's encouragement, I began to realize that one way to stop Petey from dragging me down was to ignore the stares from other people and fight back through physical activity. No matter how halting and stiff my movements, by God, I was going to move.
Now that life again seemed worth living, I decided to opt for the deep brain stimulation (DBS) surgery at The Mayo Clinic, which my Mayo neurologist and I had been chatting about for more than a year. DBS involves inserting an electrode into the brain that disrupts the bad activity at a specific location. Power is provided through wires running behind the ear and down the neck to a battery pack surgically implanted under the collarbone. I am forever grateful that Alim Louis Benabid developed this crazy bionic brain fix, and that I had the opportunity to get the surgery.
We decided to just do the left side, as it was my right arm and leg that were really giving me problems. We could do the right side later. There were potential side effects and complications, but I decided that the quality-of-life issues definitely pointed toward the brain surgery.
So on Jan. 13, 2010, I went to Mayo and had it done. The unusual thing is that I had to be awake as the surgeon carefully placed some electrodes in the proper place in my brain. My head had to be kept completely immobile, so they screwed it to a metal frame. After the surgeon finished, my neurologist took over to adjust the settings.
I remember he had me count backward from 10 as he turned the knob on his magic gizmo. By the time I reached six, I wanted to say the numbers, but I was no longer able to. I simply could not vocalize the words. So he cut back a notch, and we went on to the next setting. When he reached a point where I seemed to be pretty good, I was sent off to get the wiring and the battery pack in my chest. It was done: I was a cyborg.
I spent the night in the hospital, but they released me about 2 p.m. the next day. My wife and I grabbed a late lunch at a Ruby Tuesday — a day after brain surgery, and I didn't need the cane! This is when Suzanne suggested I kick it up a notch and get a personal trainer, one who understood the limitations of being a Petey's friend.
As usual I was hesitant, but I rejoined the YMCA and signed up with a personal trainer. The first couple of weeks were spent with me complaining and saying I couldn't do something and the trainer proving me wrong.
When I first started, I could barely do a pushup, even on my knees instead of my toes. But before long, I could do 10 while balancing on a medicine ball. When I tried working out on my own, I would do crunches to work on my abdominals. The trainer knew all sorts of other ways to inflict pain on my abs, however. I spent much of the first couple of months sore in parts of my body I didn't even know I had.
The results of all that effort? Not only was I feeling strong physically, especially my core, I was feeling more positive mentally. Being successful at something will do that for you. That's when it hit me (perhaps a DUH! moment for others) that working out was good for you mentally as well as physically. My balance was better, I could get up from a couch easier, and I was standing up taller. I felt — and feel — great, while at the same time recognizing and accepting my few limitations.
So I have become a proselytizer for exercise, and not just for those who are young and healthy, but also for those who suffer from debilitating diseases. Granted, it is easier to sit back and say, "I can't," but chances are what many people are saying is "I don't want to." What they need to be saying is, "I can."
And tell Petey to go to hell.
Bohle is a University of North Florida professor in the Department of Communication and has been a Parkinson's disease sufferer for about 14 years. His blog can be found at robertbohle.com/blog.