When I learned I had Parkinson’s at 77, I went from envisioning myself as a new Tesla to a rusted-out 1940s jalopy. I was stuck in a “twilight zone,” not ready for symptom-relieving drugs like Levodopa or for medical devices like DBS. The neurologist wasn’t amused when I asked whether he was going to wait until I got worse before doing anything to make me feel better. 

Fortunately, since I was also responsible for developing and using them in the area of communication disorders for 50 years, I was able to cull 10 that my clients and I found most useful for getting through one of our “Parkinson’s days.”

1. Slow Down. This is the simplest and most effective strategy because it aligns the speed at which your brain processes information with the speed at which you expect it to function. The estimated lag time between the brain sending a signal and a muscle responding is between 20 and 100 milliseconds. If the connection between the brain and a muscle group becomes unstable—as it does with Parkinson’s—increases in the delay can be catastrophic, e.g., not reacting quickly enough when walking is abruptly stopped by a group of children. Slowing down all of your movements can reduce the lag time for those needing it the most.

2. Don’t Fight the Odds; Reduce Them. Most physical problems associated with Parkinson’s stem from a cluster of factors, ranging from attitudes to flexibility. For example, research into why people fall has identified 17 potential reasons. Of course, not all were present when I tumbled down the San Francisco Opera Building stairs. But after analyzing my last four falls, five of the 17 were consistently present. Statistically, the more of these culprits present, the greater the likelihood I’ll fall. When conditions look dire, either reduce the number of potential culprits, take extra caution, or slow down. 

3. Change Activities. Think of your brain as just another muscle. Maybe it’s a bit smarter than your biceps, but both follow the same rules. As we age, our muscles and brains fatigue more quickly than when we were younger. In my 50s, I could work on my novel nonstop for many hours. Now, after one hour, I need to “reset” my brain. Refresh your brain by taking a 15-minute break every hour and doing something very different. When brain fog develops, stop the current activity and switch to another that’s very different.

4. The Brain and Body Aren’t Enemies. How often have you heard “mind over matter” as a motivator when your body is telling you it can’t go on? They aren’t battling each other: they are trying to reestablish the connection they had before Parkinson’s threw sand into the works. Your brain and various muscle groups are collaborators, not enemies.

5. Forget the Nike Mantra “Just Do It.” Nike’s 1988 advertising slogan glorified an approach to life that mirrors the “British stiff upper lip,” but it makes little sense if you are living with Parkinson’s. We have experienced enough failures that stem directly from the disease; we don’t need to voluntarily add more. The “No pain, no gain” approach to rehabilitation has been shown to be less effective than a gentle, systematic approach to your goal. If something feels too difficult, don’t proceed. Make the path easier. “Too much pain, no gain.”

6. Repeat, Repeat, then Repeat. Repetition is the most important element in relearning automatic behaviors such as walking, playing a musical instrument, and maintaining a stable posture. Watch a young child repeatedly trying to walk without plopping down on the floor. It took her hundreds of thousands of repetitions before she could break-dance at her wedding. The more perfect the repetitions, the quicker a behavior becomes automatic again. 

7. It’s Not a Failure: It’s a Warning Light. While failures are never joyous events, they serve as your body’s warning lights. Five years ago, I could easily cover the holes on my Irish flute with my fingers. Today, because of decreased precision caused by Parkinson’s, I often don’t fully cover the holes. When the simplest version of “Wearing of the Green” makes listeners wince, I know it’s time to practice finger-precision exercises. Every failure can provide feedback on what you need to do to improve your symptom control.

8. You Are Not the Same Person You Were Before Parkinson’s. If you assume Parkinson’s hasn’t changed your identity, the consequences can be psychologically and physically disastrous. Identity is a complex phenomenon that encompasses beliefs, values, experiences, and expectations. Parkinson’s affects all of these aspects of who we are. Let go of the image you had before your diagnosis and work on accepting your new, ever-changing self.

9. Don’t Try to Replace Activities You Can No Longer Do—Search for the Emotion You No Longer Experience. When we lose something special, we may try to replace it with something similar. That strategy rarely works. Instead, search for the emotion the lost ability or activity evoked. It’s more difficult to replace the lost object, person, etc., than to recover the emotion.

10. Stop Being Your Illness. Chronic illnesses like Parkinson’s are overwhelming. They change who you are and what you envision for your future. Depression can follow if you don’t balance it with positive activities—try at least three each day. You are someone with an illness; you are not the illness.

The Takeaway

There is hope for non-pharmacological management of Parkinson’s symptoms. Although it’s more difficult than managing your pill schedule, it’s possible, whether by being careful about your diet, exercise duration and intensity, or by how you approach relearning automatic behaviors. Trust me, there is life after Parkinson’s.

Have a question you would like to ask me? Ask it, and you’ll get a quick response from me, not a humorless AI program.