People are often described as "fighting" cancer, with a metaphorical "war" going on between the body’s natural defenses and the illness.
The difference with Parkinson’s Disease is there’s nothing to fight; your body is betraying itself. For reasons that aren’t well understood, your brain stops producing dopamine, the chemical it uses to control your muscles, causing the stereotypical "shaking" often associated with the disease.
And if you are fighting yourself, things can’t really get better. They can only not get worse for awhile.
My father was diagnosed with Parkinson’s Disease in 1992. He was 53; I was five. He died in 2009.
So when I saw that Texas A&M’s new basketball coach Billy Kennedy was diagnosed with the disease at the age of 47, my heart sank a bit. A big-time basketball coach almost always has a wife and kids; it’s helpful to have a family image in such a high-profile job. Sure enough, Kennedy has four: 23, 21, 16 and 7.
The school announced that he would take a leave of absence in the hopes of a speedy recovery. I don’t know anything about the man or his financial situation, but if I had to give him advice I’d tell him this: get a job that’s going to allow you to spend more time with your children.
Kennedy will be able to continue coaching for some time at A&M. Parkinson’s doesn’t have any specific timetables or set deadlines, more a broad direction. Eventually, he’ll start to tire more easily, he’ll start needing to sit down more, walk more slowly, chew more softly.
Then one day, he’ll trip over himself and fall. He’ll hold a pen, but be unable to grip it. He’ll hold a phone, but be unable to dial it.
The body is your brain’s way of interacting with the world. Not being able to control it has all sorts of awful implications you never really think about until you see it first-hand.
Imagine living in a world where your fingers have difficulty moving. If you can’t grab things, you can’t drive a car, you can’t dress yourself, you can’t use a remote, you can’t open a bottle. You can’t really do anything.
Parkinson’s robs you of your independence, and then it robs you of your dignity. There are five stages to the disease; I saw them this way: a cane, a walker, a wheel-chair and a hospital bed. 4-5 years before you need assistance, and then 3-4 years for each category.
As chewing and swallowing become more difficult, you start to eat a more liquid diet, which does pretty awful things to your digestion system. Eventually, it becomes easier and safer to just have your diaper changed.
But those are all secondary concerns. The real problem with having trouble communicating with the rest of the world is that you start doing it less and less.
Our knowledge of brain chemistry, and especially the interaction effects of such a complex system, isn’t where we’d like it to be. Taking cocktails of drugs that try to mimic brain chemicals has all kinds of effects on your mental functioning.
When you have trouble interacting with people, your world gets smaller. Acquaintances, the guys you play sports with or the families you go to church with, go first. Friends start to slip away too.
I think I was eight or nine years old the last time my dad saw the best man at his wedding. It’s very uncomfortable to watch someone slowly die; I suspect my dad didn’t want people to remember him like that.
I say I suspect because I don’t really know. I never really got the chance to know my dad outside of his illness. It’s extremely difficult for a small child to handle a parent’s disease; children are naturally narcissistic and they think that everything wrong in their life is somehow their fault.
I wish I had gotten a chance to know my father better. There’s a reason that no one wishes they spent more time at work when they are on their deathbed. It’s because, when you are being read your last rites, all that ever really mattered in your life was the people in it.
As McNulty’s girlfriend tells him at the end of The Wire, "In the end, they aren’t going to be there. Family, that it’s. Family, and if you’re lucky, one or two friends who are the same as family. That’s all the best of us get. Everything else is just … "
Getting Parkinson’s doesn’t mean your life is over. Maybe there will be a cure in the next few years, but I doubt it, although I can’t say I follow the latest news on the disease as much as I used too. And as my dad found out, any real scientific breakthrough that occurs is more likely to help people diagnosed ten or fifteen years from now. That’s the nature of a degenerative disease.
What Parkinson’s means is that you only have a set amount of time left in your life to do certain things. Coaching a D1 men’s basketball program is a 24/7/365 job. High school basketball coaches don’t have to spend all summer recruiting and travel half-way around the country every other week.
The A&M job was supposed to be Billy Kennedy’s break into the world of big-time coaching. You can get to the Sweet 16 at Texas A&M, and you might be able to get to the Final Four, and if you’re in the Final Four, anything can happen.
I wouldn’t blame him for staying at the job as long as he possibly can. All I can say is that his seven year old daughter is going to want to see him as much as she possibly can while he’s still healthy. But my guess is she won’t be able to tell him that until it’s too late.
Larry Tjarks: 1939-2009