by

My Story

Hello. My name is Dan Stultz, I am 71 and I’ve had Parkinson’s Disease for 14 years. I went to medical school in Houston and did my residency in internal medicine in Kentucky, and then practiced in Texas for 28 years. Then, I became the President and CEO of the Texas Hospital Association (THA). I retired in 2014 from THA and taught leadership to medical students at a Texas Medical School.

A little bit more background might frame my story better.

I was 57 when diagnosed, and subsequently, my right-sided tremor got bad enough that it could not be controlled without a lot of medication. My doctor recommended DBS-deep brain stimulation. That was 2012, and it was like a miracle for me. After six years of a gradually increasing tremor, it was gone within seconds of turning DBS on. It took several months to fine tune it, but it was like magic for me. DBS was like a restart. I was able to go off all meds for about three years and now, nine years after DBS, I am still on rather small doses.

I retired in 2014 for several reasons:

  • I was having trouble focusing on work, probably due to PD.
  • I had the financial means to retire.
  • The Association deserved my full attention and two brain surgeries later, I did not want the Board to tell me it was time to go.

Exercise

Over the last 15 years, it has been proven that exercise slows the progression of PD. Stretching and lifting small hand weights is good exercise, but it apparently does not slow long-term progression of the Animal. It is the exercise that gets your heart rate up and keeps it up for 15-20 minutes that has been shown to be the most effective exercise in slowing the disease. Whether that is running long distances, high-intensity exercise three to four days a week, non-contact boxing, or working out with heavy weights three to four days per week, it seems that it is higher resistance, harder exercise that makes the greatest difference. Remember that Sinemet (carbidopa/levodopa) and other meds are used to control symptoms but do not affect the disease’s progress.

So…..I do non-contact boxing at a gym. It involves hitting all sorts of punching bags and is fun. I’m sure many of you have heard of Rock Steady Boxing. Davis Phiney and Michael J Fox and Alan Alda and Linda Ronstadt all box. I have boxed since 2016 and started back on April 1, after I got the COVID vaccine.

Why does non-contact boxing help?  I am not sure researchers know for sure but potentially it helps by:

  • making you cross the midline while focused on a target
  • helping with hand-eye coordination and balanced foot movement
  • making you shift your weight and providing balance training
  • letting out frustration, anger, and getting more adrenaline into your system
  • engaging endorphins inside the brain, which act like dopamine.

Boxing does all of these, and there is a net total dopamine increase; but however it helps, I choose to hit the bag and sweat! All exercise is good, but some types are better than others. It also has to do with what you can tolerate.

Other Interests

For a hobby, I make hunting and butcher knives. I lift weights, build rock walls, and chainsaw overgrowth. I tore out wet drywall after our winter freeze, and I try to stay continually active. My neurologist says I am the only chainsaw operator she has in her practice.

I force myself to go outside every day and do something physically challenging, being careful about my balance which is not so good. Notice I said, “I force myself”. The Animal would prefer you are isolated, quiet, subdued, embarrassed to be seen, to atrophy and to be still, for you to be diminished and minimized. Look at your handwriting, and listen to your voice, look at the size steps you take—all efforts to minimalize you, to make you smaller. One of our boxers said, “Parkinson’s is a quietening disease.”

Attitude

You have to fight back.

Maya Angelou said, “You may not control all the events that happen to you, but you can decide not to be reduced by them.”

Davis Phinney said, “I can’t control that I have PD, but I can control how I live with it. “

Attitude is critical. You define how you react! You set the pace and the actions, intentionally, with purpose! You need an attitude about the Animal. That is why when I retired, I decided to make it my second priority, after family, to take it head on to fight. That is why I personalize it and call it the Animal. That makes it easy to hit a punching bag! Mowing our three acres is not a chore it becomes a therapy. Getting out, going to the grocery and hardware store all are physical and cognitive therapies. Reading is cognitive therapy. The more I can do physically, the better.

Except getting on ladders. I stay off ladders!

A Long Haul

You should also develop an attitude of an honest acknowledgment of the foe because Parkinson’s does not lose over the long haul.

And it is a long journey, not just an episode of care. It is a long war, not a single battle.

And if you’ve seen a case of Parkinson’s disease, then you have seen one case. No two cases are exactly alike. I had the most common onset with one-sided tremor and I can’t find anybody’s symptoms that were exactly like mine.

It will isolate you from friends and relatives, it will rob you of freedom to move about, it will frighten you into psychological and physical isolation if you let it!!

Fight back.

I keep an attitude toward the Animal, and I mark my wins! DBS was a huge win for me. Boxing has been the second biggest win and I win three times a week. Making and creating knives has been a third win, an excellent sit-down, creative hobby for me in my shop with Bruce Springsteen piped in. I also try to write about my life stories and ideas. I keep a journal and put my ideas and thoughts down on paper. I collect quotes and copy down what smart people say. I am going to shoot skeet in May. Those are all wins. I know my days of running a chain saw and piling rocks will come to an end, but if heavy exercise and if challenging my abilities allows me an extra two or three years or more doing those things, I will make the effort.

See what I mean about taking the Animal personally?

In terms of social and peer groups, I feel safe among the other boxers and the other boxers are my support group. It’s good to be among your peer group. That is true of breast cancer survivors, AA therapy, bridge players, and people with Parkinson’s. Find a group to share with. Start a support group if you don’t have one!

Knowledge is Power

I like to say that “Ignorance is never bliss.” You can’t know enough about the Animal. Read Michael J. Fox’s books. Read about DBS and other procedures. Look at the Parkinson’s Foundation websites. Enter a drug trial with one of several foundations. Get on mailing lists and go to webinars. Find out more. Fighting this Animal is your job now. Understand the ways the Animal acts!

Knowledge is power!

Maintain

How much stronger can you be? Can your wrists ever be too strong in a fall? No. Can you get off the ground by yourself two, four, six times a day? Make that a goal if you can. One of my daily goals is to get down and up off the floor four times a day. If you do that, the Animal will have a hard time catching you!

Accentuate the positive, those are wins, too!

Maintain! There is a good word. Maintain! If you can walk a mile or a half a mile a day, or just 100 yards, work to maintain that! Don’t let PD limit your daily distance-maintain! You decide how far you are going to walk.

Here’s how to chalk up easy victories over the Animal

  • What do you like to do? Then do it consistently for six weeks, then three months, then six months
  • Get over complaining about “boredom” and “redundancy” because if you maintain, you are ahead of the Animal. Just maintain. It’s hard to recover once you lose a skill or a sense, but you can maintain.
  • Think of counteracting whatever would diminish you:
  • Talk louder
  • Take bigger steps when you walk
  • Swallow with intent
  • Get on and off the floor if you are able. Every day
  • Walk the same distance for two weeks, then add 10 yards. Keep adding every two to three weeks.
  • Play golf? Add a walking trip around the parking lot before and after 18 holes. Tell your spouse I said you have to play three to four times a week.

This animal will turn you into a quiet, isolated, non-communicative person if you let it. Decide for yourself where your boundaries are. I can’t play basketball anymore, but I can dribble and shoot at an elementary height goal and that’s what I do. Actually, I dribble now as good as I did in college, which was not good then, either.

Fight Back!

Finally. The American philosopher William James said, “It is as important to cultivate your silent power as it is your word power.” You must create and cultivate inner power to fight back. Don’t give up. Don’t allow the Animal to set the disease parameters. It will make a difference. Get sweaty, exercise, decide to extend your quality of life now, because unless you have a plan, you’re likely to lollygag around for a few years and never get a plan to fight back.

When I was doing my training at the University of Kentucky, a lady came in with slight rectal bleeding about 2 am. The next morning the attending doctor asked what the sigmoidoscopy showed. The resident in training said that he didn’t have time to do it, that he was going to do it this morning.

The attending said, “Did you sleep any last night?”

The resident said, “Yes.”

“Then you had time,” answered the attending physician.

__________

From opening remarks for the Parkinson’s Foundation of Western Pennsylvania conference, Saturday, April 24.

Dan Stultz MD 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 2007-2014 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.