Coping with Parkinson’s disease
I was diagnosed with young onset Parkinson’s disease 10 years ago at 44. We were hiking to the base of Broken Top, and I couldn’t keep up. I was usually lead dog, so I knew something was wrong. We went to a neurologist in Bend and got the diagnosis.
I started a medication regime and continued mountain biking, hiking, snowshoeing and cross-country skiing...though when I fell, it was really hard to get up. It’s an adjustment you make after a life-changing diagnosis like PD. You do what you did before -- just not as well or as fast.
The same is true for your career. I kept working as a field project manager for Pacific Power. The people I worked with didn’t think, “When is this guy done?’’ but “How can we get him a job where he can share his experience?” I was able to tack five productive years onto the tail of my career.
My symptoms include inability to move -- or very slow movement -- and speech problems. In 2007, I got a deep brain stimulator (DBS), which takes the place of some medications. My DBS was implanted at Kaiser using the Burchiel technique, pioneered by Dr. Kim Burchiel at OHSU. My neurologist and neurosurgeon both trained under him. This training ensures there will never be a shortage of neurologists to help folks like me get back some of our old lives.
A DBS takes some fine-tuning. I’ve had four surgeries to adjust or repair the unit. In February 2010, a surgery damaged parts behind my left ear … in my head! When you have mechanical problems with equipment in your skull, you want the best. That would be the guy with his name on the procedure, so I went to OHSU.
You’re awake during surgery, and it can be unnerving to have someone “getting inside your head.” But I observed “Team Burchiel” in office visits prior to “Operation Repair Mission,” so I had complete confidence in them. About three hours in, an assisting doctor said, “Kim, we’re nearing ‘the point of no return’ -- any chance you will need to abort?” Dr. Burchiel said, “We’re going to finish.” If I was going to war with anyone, I’d like it to be someone with the command presence of Dr. Burchiel.
Going to OHSU was like checking into a five-star hotel. Everyone is good-humored, supports their coworkers and focuses on comfort for the “customer.” The ICU nurses were incredible, and the ratio of nurses to patients allowed them to take good care of everyone.
The last year has been a long road back, but without the care I received in those first critical days of “post-operative dry dock,” who knows where I’d be in my disease? Before surgery, I couldn’t move and was very uncomfortable. I described my speech as “polite drunk,” very quiet and slurred. After the adjustment, we were taking my daughter to the airport when she said, “Dad, I can understand you!” I walked across the terminal -- with a bag -- to help her check in. No stumbling. Even if optimal results like these only last a couple of weeks, they’re worth the price of the ticket.
Retired now, I have a new hobby to fill my days: “Birdbrain Birdhouses.” I donate them to auctions and fundraisers. I have a Facebook blog that a friend just offered to edit into a book. I’m getting stronger every day thanks to Dr. Burchiel and “Team Burchiel.”