About three years ago, I was diagnosed with Parkinson’s Disease. It has changed my life and the lives of my Family. Changed my life, not ruined it. I travel now more than ever, not because of any fear or thoughts of “the clocks running out”, but simply because it makes me feel better. The Points and Miles hobby helps me focus and challenges me daily. I’m a numbers guy and it works.
I can still “control” what you see, to a point. I look normal, unless you add stress and/or lack of sleep, piss me off or ask me to write anything down and it might show at a meal as I try and eat with a fork. Lilly says that I eat slower. I haven’t noticed, but it does make me wonder how I must have appeared to eat before…and I have accepted that being a Surgeon or a Watch Maker is not an option any longer due to “fine motor control” issues. Some have suggested that my speech is softer and that it is getting harder to understand me. I probably talked too much anyway.
Traveling with Parkinson’s is a dance of trying to minimize everything listed above and still be happy and functional. When I was diagnosed, I walked out on the doctor, crawled under a stairwell and just sat there, trying to grasp what I had just been told. I originally went to the doctor thinking that I had Carpal Tunnel Syndrome. After numerous tests, there it was. I was 49 years old and now having a very bad day. I went home and immediately made a big mistake, I got on the internet and freaked the !@%# out. The process of “dealing with it” had begun…and it wasn’t pretty. I just wanted to isolate myself and be left alone. Lilly and the kids wouldn’t have it. Two of the kids, who lived out of state, joined the actor Michael J. Foxs’ Foundation to learn and raise funds for research while Lilly and the other three circled around me. I never felt alone. Two things I’ve learned; what Parkinson’s is and what it isn’t.
What it is: Degenerative (you won’t get better) and a kick in the teeth to your status quo. Your brain has either stopped or reduced the amount of dopamine it provides to your body. This is a big deal because without it, A can’t talk to B, so things don’t move smoothly. It can and is frustrating and there is no cure. Stress plus lack of sleep and I can barely form a coherent sentence.
What it isn’t: A death sentence (it, per se, won’t kill you). It’s not the end of the world or an excuse to give up living, especially for tomorrow. It’s not contagious and you didn’t do anything wrong to get it. It doesn’t seem to move fast so catch your breath, most likely you’ll have plenty of time before the rocking chair. It’s also not the monster hiding under the bed and Death has not got you on his to-do list.
Positives: There are very effective medications available. Exercise has now moved into the top five on your list of important things as does getting a “good nights” sleep. You learn to embrace the positives and deal with the negatives. Basically, you quickly get your @#!$ together. It’s also “semester finals” time on your financial planning. Did you make good decisions in the past or not. The Piper has come a calling…
I love to go everywhere. Traveling keeps you active; walking helps enormously. Planning a trip challenges your mind and reminds you that tomorrow will come and you will be a part of it. Traveling also helps you interact with the world and helps you to be social. It reminds you to breathe. Best part is that it doesn’t require any “fine motor” skills and you can relax. More and more people who have Parkinson’s are living normal lifespans. Awareness is growing and with it, better research. Michael J. Fox has lived with Parkinson’s Disease for ~25 years and his foundation http://www.michaeljfox.org immediately comes to mind and gives me a tremendous amount of hope.
Parkinson’s Disease is not the end of the path, it’s just a left turn up a hill. You just have to keep on going.