Struggling
I’ve been away from writing for about six months with what I call PA or Parkinson’s Apathy. I don’t know how much is written in the literature of Parkinson’s about the signs and symptoms of plain “apathy”, but I reached a point last summer wherein I had no initiative, no wants, and no real desire to change what I knew was detrimental. I think it tends to come on after 10-15 years of having the disease—just my opinion.
I lost all my hard-driving personality, my offensive mentality, and my desire “for the ball”. I told my doctor about the feelings, and she acknowledged that this “wasn’t a good thing.” I didn’t feel depressed. I just had no Umph! My get-up-and-go had got up and gone! I didn’t know if it was my age, but 72 had not felt that old a year before. I didn’t feel depressed, I just didn’t care about my hobbies, seeing friends, or going to boxing exercise classes. I didn’t care if I got the ball or if anyone else picked it up. I just didn’t care.
Maybe that is depression.
Moving
Then in January of this year, we made the decision to downsize our house and property and the apathy got a little better. I got tangled up in my Rytary dosages with dyskinesias that took about two months to get cleared up; all my fault.
Then, I thought it made the apathy worse when we had our estate sale and I got rid of all my “lingering toys.” Things like my sanders and power saws for knife making, yard tools, and four-foot-long Stilton wrenches (monkey wrenches) for changing out leathers on windmills.
And my workshop. That was a big one to let go of.
All the stuff I had loved, but was never going to use again, nor were my kids going to use any of it.
It’s probably a common story, but I had never seen moving as a dreary thing, but rather a chance to refresh, clean out, and move on. Still, I was down in the dumps with apathy for this even though I knew it was the right call. On our moving day, I placed a chair in our new house and sat in it as movers filled in the house around me.
I helped by pointing them in different directions with a cane I used at the time.
Learning
That’s when I realized that Parkinson’s was attacking me from a different angle, that Parkinson’s apathy was after me.
How often does apathy sneak up on us and get interpreted as worsening depression or early dementia or other ideas? Maybe we write it off to organic infirmities like arthritis or heart problems, as something “aggravating the PD,” and maybe it is part of the depression spectrum. Whatever the case, apathy is there waiting to fill us with nothing. It offers us only time in a chair to ponder the future which has not yet come. Allan Cole says, “The past is gone, and the future is yet to be. Today is all we have.”
I call Parkinson’s Disease “the Animal” because it is like a bear or coyote in the dark trying to sneak in and take from us—coordination, stillness, taste, smell, muscle strength, and more. The Animal attacks slowly, starting with a finger twitch or blocking our sense of smell. Then, quietly, the Animal tries to steal off a greater portion of us over the span of many years—“degenerative,” they like to call it.
It is a scavenger and predator.
Contributing
To counter this apathy, I had to be purposeful and intentional. I had to get up, get going in my routine, and be mindful of apathy. I must continue to be aware of not being, as my dad used to say—
“lackadaisical” in my activities and, instead, be purposeful and create meaning. Practically, that includes reading and writing daily, to be about purposeful exercise and stretching and accomplishing a specific task every day. It does not have to be much, but I need to finish the day knowing I contributed.
Here are some ways I try to contribute: mowing the yard, weed eating, playing with the dogs outside, walking 400 meters, doing my stretching exercises, writing (for better or worse), spending time in the garage, and whatever else I can stir up safely.
I don’t want to fall. That’s very important.
I also see my doctor and take the medication she gives me, and I try to incorporate three additional things that somebody wrote are needed by those of us with the Animal: music, social interaction, and exercise.
I also consider each of my tasks as part of my therapy, which also includes games, puzzles, and things like cross-body motions that help me maintain my cognitive abilities.
Hoping
At the end of the day, regardless of how much or little I feel like my combined activities have achieved, I review them and plan for the next day’s schedule.
I find that doing all of this—and even parts of this—helps me keep the apathy at bay. Maybe what I’m describing is therapy for depression, but for me, it is more than that—and better. I might not be the lead doctor putting in 14 hours of medical care starting at 7 a.m., but I am still captain of my ship.
Yes, 16 years after the animal first attacked me, I’m still at it; and more and more my apathy is being held in check by a hopeful heart.
Allan’s right. Today is all we have. And now, at the end of this day, which will be gone, forever, I look forward to tomorrow.
You can look forward to it, too.
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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.