Muhammad Ali, Pope John Paul II, John Baumann, Michael J. Fox... Wait a minute, back up a name. What do I have in common with this group of famous people? You may have guessed it. The answer is that all these people have been diagnosed with Parkinson’s including me. Not many people outside the Parkinson’s community know much about this condition. I prefer to call it a “condition”, but it actually is a disease, an incurable, progressive, neurological disease, which means that I am getting worse every single day I am alive.
For me, the first symptom was that my right arm did not swing when I walked. In fact, my friends (rightfully so) made fun of my gait not knowing that it was related to Parkinson’s. By the way, it is very common for Parkinson’s to be undiagnosed or even misdiagnosed by doctors, sometimes for years. Over the next couple of years, other common symptoms of Parkinson’s (referred to as PD in the community) appeared: less blinking, poker face (no one in my Texas Hold’em group could ever tell when I got that fourth Queen), micro handwriting, and, finally, more and more, my right hand started to shake.
I had injured my thumb playing goalie for the company soccer team and thought that the shaking was nerve damage associated with the surgical repairs. When I went to the hand doctor, he referred me to a neurologist. The funny thing about PD is that there is no test to determine if you have it other then doing an autopsy.
Being that I am still alive, and that I intend to stay that way for a long, long time, I opted against the autopsy (not a tough decision). What you can do is start the medication and see if the symptoms temporarily cease. If the medication works, you’ve got it (hope you’re learning something, pre-PD, I had no idea about any of this). Unfortunately, the medication worked. I am now a Person with Parkinson’s, which is a label that I think is dumb. Being from Louisville, I am a Louisvillian. Using the same logic, I intend to be known as a Parkinsonian. Thus, I am a Louisvillian Parkinsonian. Almost sounds like a scientist!
Where was I: at first, I was in shock, I had to function day-to-day, do my job, support my family, tell my relatives, deal with their reactions, deal with my own emotions, mostly, I was tired all the time. Thank God, it was not affecting my ability to do my job at the high level I strive for - that was my biggest fear. I identify so much with being an attorney and adjunct professor at the University of Louisville that I was very concerned. Next was telling the people whom I directly work with (kudos to them for being as supportive as they are). The main reason that I told them is that PD symptoms are somewhat similar to DT (Delirium Tremors), and I did not want them to think that I had been on an all night drinking binge.
Once the shock started to wear off, I got proactive. I learned as much as I could about PD. I was asked to be on the board of the Parkinson Support Center of Kentuckiana. I went to the World Parkinson’s Congress in Washington D.C. (talk about supportive, my seventy something year-old parents drove from their home on Hilton Head Island and sat through a bunch of hypertechnical lectures just so that I wouldn’t have to be alone- talk about love). What I learned was that there are some brilliant people working on a cure (More than five years ago they said that a cure would be discovered within five years, I guess scientists have some trouble with basic math, but, come on team, get going with it, my quality of life depends upon it).
Next, I learned there is something that I can do. Although you can’t stop the progression, you may be able to slow it. Wow, that was what I was hoping to hear, talk about motivation. Every Parkinsonian progresses at his or her own rate. Since I am not a medical researcher (too late to go back to school, too old to put in 12 more years), I am not going to find a cure (once again: go team!). However, I may be able to affect my quality of life. This list may not surprise you: exercise (variety and often); eat right; take supplements; reduce stress; be optimistic; laugh a lot; stretch; and lots of affection (not really but can’t hurt).
Get in tune with your body and involve your movement disorder specialist to regulate your medications. By the way, eating right includes blueberries, strawberries, and (no kidding) red wine and dark chocolate. Say no more, I am signed up. Supplements include multi-vitamins, coenzyme Q-10, vitamin C, Omega 3-6-9 and Creatine.
My next decision was to do something that I felt would be more worthwhile with my life than being a General Counsel for a publicly traded corporation. Despite much apprehension, I recently embarked on starting up my own legal/management consultant/speaker business, JK Success Enterprises (JKSuccessEnterprises.com). Just as there is much that can we done to proactively prevent, or at least slow, the progression of PD, I dedicate my energy and passion to eliminating workplace harassment, supervisor leadership skill training (including to avoid unionization), reducing workplace injuries, and teaching success and negotiation skills. I also speak, when asked, on Parkinson’s.
I also decided to have a house built in the woods to live in and be a part of the experience so bought a chainsaw, got some lessons, and cut down over 40 trees myself on weekends (the cutting down was scary but not as physically draining as cutting up the trees after cutting them down). Being a former athlete, it was a very rewarding nine months and reaffirmed for me that life is not over!!
That is where I am — enjoying life, enjoying work. Oh yeah, did I mention that I am a Parkinsonian and I guess proud of it.
Although I have chosen to be as optimistic as possible, I recognize that I am in the so called “honeymoon phase” because my meds are effective and the only impairment I experience is inability to write well, throw with my right hand (unfortunately I was a big-time softball player) and mild hand tremors. I, as well as many others with PD experience, or will experience, difficulty or inability to walk, drive, talk, and even swallow, among other things. Please consider donating to the National Parkinson Foundation so that we can increase public awareness, provide support, and hopefully find a cure.