It’s been quite some time since I have written. It could just be that I’m lazy, or it could be yet another manifestation of Parkinson’s. As both my wife and my family practice doctor have pointed out to me recently, though, I can’t blame everything on PD. Since I prefer to believe that I’m not lazy, let’s just chalk it up to an intentional building of suspense, and move on.
As a PWP, my days are a study in contrasts. Some days are good, and some days are not. Sometimes I can’t stop moving, and sometimes I can’t start. Sometimes I can be philosophical about this whole mess, sometimes I want to raise the rafters screaming at the heavens. However, as the man with his head in the oven and his feet in the freezer said, “On the average, I feel pretty good.”
The concept of movement has become important to me as I continue to fight PD. In its most literal, obvious form, Parkinson’s is a movement disorder; tremors make me move when I don’t want to, dyskinesia REALLY makes me move when I don’t want to, the muscle rigidity and bradykinesia make it harder to move when I do want to, and the postural instability makes the whole thing amusing to watch.
Parkinson’s is a movement disorder in another sense, though. If you let it, it can keep you from moving forward with plans for the future, with activities that were previously enjoyable but now are just difficult, and with tackling new situations and challenges. There’s a temptation to just coast to a stop and let the disease have its way. PD attacks and destroys physical well-being, and it also attacks your will to resist, cognitively and emotionally. Some of my geekier friends call this a “negative feedback loop'” but the rest of us just see it as “the downward spiral.” Fighting this downward spiral is one of my most important tasks in life, but this is another area of contrast for me – in some ways I’m being successful, and in some I am still learning.
I have to confess (good for the soul, I’m told) that I have not been diligent about physical exercise. I started out with the best intentions and a great support system behind me (and whipping me with a stick from back there). Unfortunately, my support system had to go back to work supporting us, and my best intentions served as paving stones on the road to where I am now. There is so much that’s unclear about Parkinson’s disease, but this much seems quite clear: exercise may be the most potent weapon against disease progression and for improvement in quality of life. I’m ashamed to say that my mornings of walking for miles and climbing hundreds of stairs have turned into a slow, shuffling walk from the bedroom to the family room and a couple of sets of tennis on the Wii, and I can feel the difference. It seems so simple: just put down the keyboard, get your lazy carcass out of the chair, and go DO something. So with ample spousal encouragement (please take note of how carefully I did not say “threats”), I’m now involved in a number of new activities that should help me keep moving in the right direction.
The Oregon Research Institute recently released a study indicating that tai chi is very beneficial for PWPs. Tai chi is an Eastern martial art and meditation form composed of a structured series of slow, graceful movements, and the claim is that it helps to improve balance, coordination, strength and flexibility for PWPs. I had seen tai chi before, and with my seemingly boundless capacity for misunderstanding, I told myself, “well, it doesn’t look that hard. After all, I am an athlete. I’ll give it a shot.”
Two points of correction here. First, I had my verb tense wrong. I should’ve said to myself, ”after all, I WAS an athlete,” or “I REMEMBER being an athlete,” or even “I could pick an athlete out of a police lineup if I had to.” Even without PD, the world has moved on since my last sub 50-second quarter-mile.
Second, although it’s definitely doable, tai chi is anything but easy. It has quickly become apparent to me that those slow, flowing movements require a willing spirit, a disciplined mind, and a conditioned body. I started with one, and I’m working on the other two. Now, when the instructor tells me to “tuck my backside under,” I don’t ask him, “under WHAT?” And I’m even starting to get good at pretending I can feel chi flowing from my fingertips out into the universe. No one likes a skeptic in a tai chi class.
My wife and I have also embarked on another project that we’re both enjoying. She’s developed a strong interest in computer systems and information security in the last year, and she recently founded a junior ROTC team at her high school to compete in the CyberPatriot Challenge. CyberPatriot is a national high school cyber defense competition hosted by SAIC, Lockheed Martin, and the Air Force Association. This is the program’s 4th year, but my wife’s high school had never had a team before she decided to form one. She started out being the coach, and with my background in information security, I was a natural choice as a mentor. Since early fall, she and I have worked together for several hours a week to train this group of high school students to become cyber warriors. They are an amazing bunch of cadets who are accustomed to being successful, and together we built them into a national championship team, one of the top two Army JROTC teams in the nation. They’re going to Washington DC in late March to compete in the national finals. I couldn’t be more pleased for all the obvious reasons, and for some less obvious reasons too. It’s been a real joy for me to share some elements of the last 25 years of my professional life with my wife, and see her get as excited as I have. I also have been feeling a profound sense of accomplishment in transferring some of the things that I’ve learned to others that might use them, my wife included.
As I have done before, I’ll give you fair warning now – the next section might be a little frightening, and definitely will be counterintuitive. It involves a certain PWP with a gun in his hand. But, let me start a little farther back and provide some context.
Before my diagnosis, scuba diving was one of the joys of my life. I loved the feeling of weightlessness as I drifted in the water – diving felt like flying to me. Even in my dreams of flying, rather than wearing a cape like Superman, I was wearing scuba gear. I also loved teaching diving and being a part of a diving community of friends sharing a common passion. I was attracted to the “controlled danger” element of scuba: done badly, without training and planning, diving can be deadly. But with the right training, preparation, care, and attention, it’s safer than crossing the street. And, it stimulated my love of gadgets and equipment; there’s so much to know and learn. I loved everything about diving, from beautiful drift dives in gin-clear water in the Caribbean to diving in a south Texas lake in pitch-black darkness in 50-degree near-zero visibility.
When I was diagnosed, it quickly became clear to me that my diving days were over. The unpredictable nature of my symptoms and drug side effects, coupled with my desire not to kill myself or someone else, made the decision clear if not easy. So, I put away my wetsuit and fins. I know of other PWPs who are still happily diving years after diagnosis, but my personal situation and my diving style led me in a different direction.
Not long ago, however, with the help of a friend and colleague (who is also a bad influence in other ways) I found something with many of the same characteristics as diving. Through a complex series of circumstances, I had just bought my first handgun, and I wanted to get some training in how to use it. My friend told me, “you should come out and shoot with me and some friends of mine – you’ll never find better training, and it’s as fun as it gets.” His group of friends tuned out to be the American Action Shooting Association, an a wonderfully welcoming group of shooting enthusiasts led by a local international grand master of competitive shooting. These folks are as passionate about shooting as my other group of friends is about diving, and just as serious about safety and doing the right things for the right reasons. I was almost immediately hooked, and not in a helicopter-like way.
Action shooting isn’t just standing in a line and putting holes in paper. There’s a strategy and gaming element to it, it requires planning and forethought, and it requires excellent training and good habits ingrained by long hours of practice. The goal is to shoot your way through an obstacle course of steel targets of different colors, hitting each colored target a different number of times and in the right order, as described in the course instructions. Shooters are scored for speed and accuracy – unlike tai chi, I bring neither of those things to the table, but I’m working on it. I may never be very fast, but I’m learning to be careful and safe, and as a young car racing enthusiast recently told me, “slow is smooth, and smooth is fast.”
I’m learning to move all over again in this environment – controlling the muzzle of the weapon, keeping my finger off the trigger when I’m not on target (harder than you might think), moving between targets without falling down, and learning to unload, clear, hammer down, and holster without shooting myself or anyone else. They’re supportive, but they don’t compromise on safety for anyone, especially a shaky guy like me. I like that. After all, a bullet heading for my own buttocks is not likely to be diverted by the realization that I have Parkinson’s. My wife’s right again – not everything’s about PD. And, unlike diving, if I decide I’m having a bad day, I just unload and go sit down to watch – I don’t have to decide what to do about the class of scuba students and the 100 feet of water above me.
And, ohhhh, the equipment. At least as good for a gadget geek as the best scuba gear, and it spits fire and makes loud noises. I started off with one helicopter, too. No telling where this will end. My friend of the bad influence has promised to teach me how to reload ammunition. It’s going to save me money, he says…
I’m moving in a different way this week – I’m at the 2012 Parkinson’s Action Network forum in Washington DC. I’m fortunate to be attending for the second year, visiting with our elected officials on Capitol Hill, telling our story, and encouraging them to help us. Wish us luck, and let me know if you have any pet concerns you’d like passed along.
And, keep moving.