The Unwanted Visitor
Diagnosed at 46
"I'm sorry. You have Parkinson's Disease."
I stood in the parking lot, the receipt flapping in my trembling hand, completely stunned by the words I had just heard. At least my neurologist had the courtesy of saying, "I'm sorry" before delivering the news. Still, it didn't seem to lesson the blow any. I felt like someone had reached into my chest and squeezed all the air out of my lungs.
My personal PD story is unique, full of weird circumstances and irony. (But then again, whose PD story isn't?) I was officially diagnosed on April 4, 2006 (4/4/06) at the age of 46. I found the "numerical coincidence" to be a little disconcerting. (As an ex ice hockey player, we all tend to be a little on the superstitious side.) It was also National Parkinson's Awareness month, and believe me, I was aware! Prior to my diagnosis, I also had encounters with the two most famous faces of our disease, Michael J. Fox and Muhammad Ali.
Like most PD patients, as I looked back at the years prior to my diagnosis, I realized my symptoms started well before I knew that my brain was being invaded by an unwanted and uninvited visitor. The signs were all there, glowing like a brightly lit neon sign tattooed right across my forehead. I just didn't see it. And really, why would I? I was relatively young and in great shape physically, so there was certainly no reason to think I had something like PD. After all, it's an old person's disease, right? Wrong.
I ended up going to the doctor after years of stiffness (rigidity), slower walking (bradykinesia), problems with my writing (micrographia), lack of arm swing on my right side when walking, and problems with my fine motor skills. I had severe pain (dystonia) between my shoulder blades and into the base of my neck. I was having problems holding pens and gripping my silverware when eating. Simply trying to get 3 crackers out of a box was becoming a huge ordeal. I even had some typical non-motor symptoms common to PD patients, like loss of smell, depression, and sleep disturbances.
After blood tests to rule out other possibilities, two neurologists, one PD specialist, a trip to the Muhammad Ali Parkinson Research Center in Phoenix, Arizona, and a two-week trial dose of Sinemet, the diagnosis was confirmed. Four times. Stunned doesn't even begin to describe how I felt. I wanted all the doctors to be wrong and say, "Sorry Todd, we made a mistake." But reality slapped me squarely across the face. Hard.
The challenges were just beginning. How do you tell someone you love that you've been diagnosed with a progressive neurodegenerative disease for which there is no cure? Sharing the news with my wife was quite possibly the hardest thing I've ever had to do. I felt a pain like nothing I've ever experienced before. And I can't even begin to imagine what was going through her mind as I delivered the devastating news.
I've always been a "Type A" personality. If I decide I'm going from "point A" to "point B," you best get out of my way, because I'll get there come hell or high water. And I almost always have multiple projects going on. In the old story of the rabbit and the tortoise, I was the rabbit. Zipping around as fast as I could, getting my hands into anything and everything. It wasn't about winning, but enjoying the adventure. Well, I do like to win whenever possible!
But now with PD, I've come to realize that I have to be the tortoise. Slow and steady may indeed win the race, but when you're used to the rabbit lifestyle, transitioning to the tortoise isn't easy by any means. PD, however, has dictated the change and all I can do is go along. I wasn't really given a choice in the matter.
I decided to research and read anything and everything about PD that I could get my hands on. Well, I did read things that scared me. Let's be honest, it's scary to have a disease in which you can clearly see your future and know that there is nothing anyone can (currently) do to stop it. It's like being in a car going down a steep hill and realizing the brakes don't work. You can steer all you want but the crash is unavoidable. Maybe just being in denial would be the better option. But education is power, so I continued to learn as much as I could.
The biggest step was meeting others with PD, those who have already traveled down the path that I was about to go down. And yes, some were far more progressed than I. But something unexpected happened. Instead of being frightened, I felt comforted. I felt accepted. I knew they understood me, what I was going through, and what I was about to go through. I felt like I was part of a loving, caring family. I felt safe. Meeting my fellow PD patients was the best thing I could have done. Isolation is a killer, comaraderie builds strength.
I'm more inspired than ever. Even though I met people who lost careers and had to dramatically alter their lifestyles, I discovered many who found new joys and talents they never knew existed. It's as if they were butterflies just waiting to be released from their cocoons. From their experiences, I've gained a perspective on life that has forever altered how I look at myself, and the world around me. PD has changed me into the tortoise and has allowed me to see all the small moments in life that are so incredibly rewarding and powerful. Moments that as the rabbit, I would have missed.
Currently, I'm a motivational and inspirational speaker who has traveled all over the country talking about living with PD. I've started a very successful young-onset group in my area. And I've decided that I'm not going to "live with" PD but instead, I'm going to "fight" it every step of the way through knowledge, diet, exercise, and most importantly, attitude. While PD may have taken away some parts of my life, it's also given me a new purpose, focus, and direction, and that's not a bad thing. Being the tortoise does indeed have its advantages.