Fight Parkinsons with coaching
SOAP BOX • Don't let disease conquer your life
Is the Sports section the right place for a story on Parkinson's disease (Big names, big fight, June 10)?
Yes it is.
While there is no good place for it, the Sports section stands out. Why? Because the physicality of sports relates to the same element in someone with Parkinson's.
An athlete at the highest levels of sport gets there by controlling his or her body; Parkinson's goes the other direction. Top athletes with Parkinson's, like Muhammad Ali and Brian Grant, are better equipped to explain the effects of the disease as it takes more and more control away.
As a former family caregiver for my father-in-law with Parkinson's, I have a slightly different view; I became the Parkinson's coach.
It started the usual way, a diagnosis of Parkinson's. My in-laws lived in Southern California when they got the news, and my first thought was that Parkinson's was a slow moving disease that takes decades to wreak havoc.
Except my father-in-law had something else. It was either progressive supranuclear palsy, or a disease with Parkinsonian effects. Either way, he was a Parkinson's patient. I thought of it as Parkinson's on steroids.
Once the disease kicked into overdrive, my in-laws moved to Oregon so we could all pitch in, with the old Dad heading to an assisted living facility. The idea of staying together didn't come up until later.
The Parkinson's family knows this all too well: Not every assisted living, nursing home, foster home or even your own home, is a safe place for a Parkinson's patient. Food needs extra preparation; drinking regular water is a danger. The staff in care facilities read the instructions for each patient and does their best on a tight schedule.
I offered to be a caregiver once Grandpa Ken went into the hospital with pneumonia from getting food or water into his lungs. Parkinson's does that.
That's when the coaching started. Once I got Ken out of his pneumonia death spiral we made a deal: We would kick Parkinson's tail every day. We would drill and practice and come at Parkinson's with the same fury championship games bring out in athletes.
This is when it counts - when you find out who you are and who you are working with. The biggest surprise of our time together was the extent my own athletic background came into play. You see, I am a former wrestler, a Greco-Roman state champion out of North Bend under Dave Abraham. I earned all-America honors at Junior Nationals in Iowa, wrestled a varsity year at Southern Oregon followed by a tryout with the All-Army Team.
If you read between the lines you'll understand I got stomped in college and at the Army camp, which seems like a harsh thing, and it was, but it opened the door to understanding how to come back from defeat.
That experience played into my Parkinson's Plan. I told Grandpa Ken that we would stomp Parkinson's every day together without stomping Grandpa Ken at the same time.
And he agreed.
A Parkinson's caregiver knows what I'm talking about. They know to keep their guy moving and not leave them in bed or in their chair. They know about the spastic bladder and use it as an excuse to get up and move around even more. They know about setting performance goals that Parkinson's says you'll never reach.
Athletes know all about performance goals and personal records. That's what they strive for. Brian Grant knows better than anyone does. He didn't say it in Kerry Eggers' story, so I'll say it for him:
Don't let Parkinson's rest.
Avoid the idea from others that Parkinson's is robbing you of the life you once had. It is changing you, for sure, but keep an eye on what Parkinson's is doing. It's setting limitations, just like the guy who told you couldn't fulfill your dreams the first time you told someone you wanted to be a World Champion, that you wanted to be the best there ever was. You didn't listen to the voices telling you that you dream too big, why listen to Parkinson's any differently.
My father-in-law was a marine in World War II. In our private time, I coached him up on dealing with Parkinson's with the rest of the family. I told him he was setting the example for the kids and their friends on how to deal with adversity. I told him he was laying track for the big train to roll on with Parkinson's tied to the rails.
When no one could hear we took turns cussing Parkinson's in every fashion imaginable, from his Marine Corps DI to my Army drill sergeant. We were salty as can be and ended up in a giggle fit each time. We told Parkinson's what to do, and how to do it. It broke the old man's mask each time he laughed out loud.
Experts have their place, but it's not in the environment of family caregiving. Once you make the bond to pound on Parkinson's everyday, it goes beyond science. When you agree to wrestle Parkinson's into submission every chance you get, it goes where a doctor or nurse has most likely never been. You and your loved one are in the Super Bowl, the World Series, the Final Four. Of course, I focused on big wrestling matches - the National Championship, the World Championship, the Olympic Championship. We alternated venues.
The good thing is we never lost.
Grandpa Ken came home with a life expectancy of two days according to the best health care money can buy. Once we got on track, we beat Parkinson's down for five years. Some called it a miracle.
We just called it another day in training.
David Gillaspie is a writer living in Tigard.