Shake, Rattle and Roll: A column about the trials and tribulations of Parkinson’s Disease

By A.C. Woolnough
Reader Columnist

Parkinson’s Disease is a thief. It is insidious. It is sneaky. It is destructive. It sneaks up unsuspected and does its best to diminish one’s quality of life, self-esteem and ability to be self-reliant.

A.C. Woolnough.

To understand how this happens, let’s introduce the word “prodromal.”  It refers to symptoms of a disease that appear before a diagnosis. For example, a slight sniffle may herald a full-blown cold — or not. PD has many prodromal issues. The most common early symptom, occurring up to 10 years before tremors appear, is loss of sense of smell. Because so many other possible causes exist, it is not a reliable diagnostic measure.

PD steals our ability to differentiate foods, the ability to snuggle up and appreciate our wife’s new perfume and even the ability to smell spoiled foods. It is both a quality-of-life issue as well as a potential health threat. For example, I can no longer tell the difference between cola and root beer. Except for texture, broccoli and cauliflower taste the same. Almonds, cashews and peanuts are just nuts with different shapes—not different tastes. I carefully check dates on dairy products so as not to drink soured milk.

Another common non-motor symptom is a “masked face.” Also called a “flat affect,” loss of fine motor control may make it seem the PWP (person with Parkinson’s) is angry, disinterested or unhappy even though the PWP thinks they are smiling or expressing joy. This masking easily leads to miscommunication and misunderstanding. My 4-year-old grandson asked me why I was mad while we were building with Lego’s. Have you ever tried to explain facial masking to a 4-year-old? PD steals again.

The essence of PD is the loss of brain cells that produce dopamine — essential for voluntary muscle movement and involved in the pleasure mechanism of the brain. Another way PD steals from us is depression and apathy. Although clinically different, both symptoms lead to a lessening of joy and appreciation of life, family and relationships. Social isolation is all too common for PWP’s and often becomes a downward spiral. Being unable to appreciate the simple joys of life, not wanting to share thoughts and feelings with others or wanting to be left alone all the time is not an ideal existence. PD is, once again, a thief.

Once motor symptoms are manifest, it is apparent that PD often steals from us our balance, our ability to prevent falls, free and easy movements and leaves us with stiffness and pain.

The good news is that superheroes do exist! Parkinson’s Warriors fight the thief every day. Here is the story of one of them —we’ll call him Bob.

Bob was in his late 60s, and his PD had advanced quite rapidly. He was the poster child for what many folks think of when they think of PD — stooped posture, tremors, balance issues, and a shuffling, painfully slow gait, assisted by a walker. With determination, every morning, Bob would hobble to the kitchen, get a bowl from the cupboard, a spoon from the drawer, cereal from the pantry and milk from the refrigerator. All this took about 15 minutes. Sitting down, pouring the cereal and milk took another five minutes and usually involved spilled milk. Eating was a laborious process as well. Bob’s goal was to complete breakfast in under an hour. Most days, he won — he beat the thief known as PD that was trying to take away his dignity and self-control. That was Bob’s superpower. At least once a day, he was in control. He was able to temporarily lock up the thief known as Parkinson’s Disease. Think about that: having a bowl of cereal as a superpower!

That’s how I choose to remember Bob, my dad.