My Father’s Story
When I was a kid, I would get frustrated with math homework or sports or an activity and I’d whimper, “I can’t do it, I just can’t.” Nearly seventy years later, I can still hear my Dad say back to me: Can’t? What did ‘Can’t’ ever do? ‘Can’t’ never did one thing.
What I did not know when I was a child was that my Dad grew up on a cotton farm in Garland, Texas, and was a first-team Lone Star Conference tailback in football at East Texas State, being the first in his family to graduate college.
He then went immediately into the Army and to Europe and fought in WWII, earning battle stars for battles in Normandy and the Bulge. Then he came home and went straight into coaching and administration.
My Dad never talked about hardship or difficulty. He just went to work. He got his master’s degree while going to night school after he started coaching and teaching, and he never talked about his accomplishments or all that he had been through. He was part of what Tom Brokaw calls the Greatest Generation.
My Story
I practiced Internal Medicine for 30 years in San Angelo, Texas. In 2006, I took the job as President and CEO of the Texas Hospital Association, and I worked at the Texas A&M Medical School as a visiting Associate Professor for leadership in 2014-2015 and then retired.
I was diagnosed with Parkinson’s in 2007.
With Parkinson’s our tendency is to say, “I can’t.” With exercise, the future, and our work we tend to fall back and offer that it just isn’t doable. I can’t because of Parkinson’s. I can’t exercise. I can’t go out to dinner. I can’t go to speech therapy. It’s too hard. I find myself repeating my Dad’s question, What did “Can’t” ever achieve? And the answer is still Nothing.
When the time came relatively early in my course of tremor dominant PD (five years) for my doctor to recommend deep brain stimulation (DBS), I paused. I didn’t know anything about it. I was a doctor but had never even seen the procedure done. Poking a wire 12 cm into the brain sounded dangerous!
But at the time, without an increasing amount of medication, I could not use a fork for fear of poking myself in the eye. Without medicine, I was limited to certain foods because I couldn’t hold a fork or use a knife. I was also trying to stay in the closet with my disease, yet, of course, people noticed.
So, there I was. I had a great job, but in my activities of daily living, I was struggling and becoming increasingly depressed. Then, on top of all my PD symptoms, I was being advised to have implants put into my brain? Risking infection and cerebral hemorrhage as complications of surgery?
I was backed into a corner. I could continue taking increasing amounts of medicine to control my symptoms, but at age 62, I could feel the canyon walls closing in. My life was ending, or at least life as I knew it.
I started converting my business dealings over to my wife. We reviewed what to do with my most cherished possessions. I had my list, and I went through it. I did the things that, as a doctor, I had told people to do when faced with a terminal disease.
It turns out I was saying I can’t all over again.
When I realized that, I shaved my head for surgery.
Playing Offense
I have come to see that, with Parkinson’s, most of the time we play defense. Taking medication to block a symptom, moving rugs that are fall hazards, or doing stretching exercises to stave off stiffness. We have our hands up, in what boxers call the rope a dope position, hoping Parkinson’s doesn’t hit us again.
But living well with PD, I’ve discovered, requires playing offense, and two ways to play offense are vigorous exercise and DBS.
Recounting the DBS procedure and immediate aftermath are for another time but suffice it to say I came through the tunnel, and it became a new day. I had been given a reset button and I had pushed it.
DBS is a mysterious, mystical experience and I had come through surgery far better than I expected. My medication was cut to almost nothing, I could use a fork and spoon and I could handwrite again. I re-started things I thought I was finished doing. I could camp, swim, and hunt again. I could weld and cut and saw better than I had done for years. I wanted to do all those things and more. I also had a new appreciation for how low I had gotten. More beautiful was the view from where I sat post-operatively.
That was more than 10 years ago, and although the miracle of DBS is still helping me, I have symptoms again. The Parkinson’s is progressing. My balance is not good. The tremor is back a little bit in my right hand, but I remain very sensitive to changes in my DBS programming. I take a drug called Selegiline, but that’s all for PD. Correction, I take a sleeping pill and an antidepressant, too, and they are related to PD. I’m still off carbidopa/levodopa, although I have taken small doses on and off since DBS.
Ten years.
DBS refocused me, rechanneled my priorities, and got me off my rear end. It got me playing offense. Now, I box three days a week and I give talks about PD. I recruit people to begin boxing, and I help at the gym whenever I can. I also go about every 6 weeks to hunt feral hogs in West Texas. I build hunting knives to preserve fine motor movement and try to fill the days intentionally with cognitive training, speech therapy, and reading. To strengthen my voice and swallowing, frequently I read out loud pieces like the Gettysburg Address.
I also write for PD Wise, and I have served on the Stronger Than Parkinson’s Foundation board. If you don’t subscribe to PDWise, subscribe to it online at PDWise.com. I view every activity as a therapy in fighting the illness. This is my full-time job.
DBS was salvation. I am at almost 16 years since my diagnosis, and I know I’m on the clock. I know that I’ve already had more quality time than others have had. I’m more grateful, more forgiving, and “things” are just not that important anymore. I have projects to work on, and I never say, I can’t.
If your movement disorder doctor suggests it, please consider DBS.
So, that’s my story. I am careful when I turn around in the shower, but I can still put my blue jeans on standing up.
And when I hear my Parkinson’s community members say, “I can’t”, I want to give them the advice that a man of the greatest generation, more than once, gave to me.
‘Can’t’ never did anything!
__________
Photo by Brett Jordan on Unsplash
Dan Stultz, M.D., is a retired physician who was diagnosed with Parkinson’s disease 14 years ago at the age of 57. He practiced internal medicine in San Angelo, Texas, for 28 years and became the President/CEO of Shannon Health System. He served as President /CEO of the Texas Hospital Association from 2007 to 2014 working on medical and health policy. He served as guest faculty at the Texas A&M Medical School in Round Rock and retired in 2016. He and Alice live in Georgetown, Texas.