February 2024

Cultivating Resilience in the Face of Erosion

I’m working on my third decade post Parkinson’s diagnosis. I got the word in January 2002. Over 20 years of dealing with PD and its attendant miseries should have turned me into a PD pro by now. My coping skills should be honed to a fine edge. I should be able to cut through this disease like a hot knife through butter.

But that’s not the way Parkinson’s works. The butter keeps falling off the knife and splattering on the table. (The dog has figured out I am the family member most likely to drop a morsel of something tasty and watches me closely at mealtimes, poised to pounce from under the table, awaiting manna from above. Or better yet, cheese.)

I try to take this in stride, but my gait is frequently shortened by my Parkinson’s to the point where I no longer stride at all, but rather, mince. “Taking things in mince” doesn’t have the same ring as “taking things in stride.” One doesn’t mince boldly toward goals, or for that matter, mince boldly towards anything else. Mincing boldly is like retreating bravely. These things just don’t fit together. 

I do not mince words, but my speech is frequently inaudible. And when it is at an audible frequency, I frequently cannot find the words to mince, making mincemeat of my ability to string words together in logical sequence. So, it’s just as well I can’t be heard, rather than be heard spouting nonsense. 

You expect things to improve with time and practice, but with PD you mince one step forward, two steps back. So how do you cultivate resilience in the face of slow and constant erosion? 

One way is to realize that your disease doesn’t make you exceptional. People are subject to many forms of dysfunction, yet they still go on. If they can, you can. Another strategy is defiance, the resolution not to yield an unnecessary inch to this unwelcome intruder, to do all in your power to keep your head above the rising water. A third way is to be flexible in choosing your battles. Look for what gives you traction in your campaign against PD and accentuate the areas you sense have impact.

You need to consider accepting help in your struggle. This may come hard when you have always prided yourself on your independence. But remember, you have many potential allies in this conflict, family members, doctors, therapists, friends, support groups, and believe it or not, the kindness of strangers.

Don’t give up the things you love doing, the things that bring you joy. You may have to modify the way you enjoy them, but if you can’t make music, you can still appreciate the music others make. If you can’t dance, you can still go to the ballet. If you can’t read, there are audio books.

Finally, don’t procrastinate. Studies strongly suggest the sooner you intervene in Parkinson’s, with exercise, medication or deep brain stimulation, the more gradual your progression toward disability and the better your long-term outcome will be. What are you waiting for?

by Peter Dunlap-Shohl
NW Parkinson’s Blogger

“It is the work of the creative to be a prosthetic imagination for the distracted and the dull”
– Maxwell Hubert Maxwell, playwright, butterfly collector, amateur surgeon and snob.