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A Day in the Life of a Parkinson Warrior

Monday April 10, 2017

It’s been said that if you’ve met one person with Parkinson’s Disease, you’ve met one person with Parkinson’s. That’s because each person with PD presents differently—despite several common possible symptoms. There are at least five common motor symptoms of PD (including tremors, balance issues, slowness, freezing and dystonia [uncontrollable movements]) and well over fifteen non-motor symptoms. The number of possible combinations are immense.  8th grade algebra (thank you Mrs. George) taught me if you have 20 numbers (in this case, possible symptoms) that can be combined with each other in as many ways possible, you end up with a huge number. I think Mrs. George called this 20! or 20 factorial. Mathematically, it means 20 x 19 x 18 x 17 x 16 …. which totals over 2 quintillion—many times the number of people who have ever lived! No wonder Parkinson’s is called a snowflake disease—every instance is unique.

I am fortunate that I have what is called tremor dominant PD because my primary motor symptom is shaking. My non-motor symptoms include apathy, loss of sense of smell (and taste), lack of facial expression, soft voice and having to pee a lot more often. I say that I am fortunate to have this type of PD because, statistically, it is the slowest progressing and least likely to lead to dementia.

To provide another, contrasting, example, I recently interviewed a friend with PD who I’ll call Pete (to provide privacy and anonymity). I asked him about his symptoms, what a typical day is like, his concerns and anything else he’d like to share. What follows are his responses.

After eleven years with PD, Pete deals with several motor symptoms including tremor and loss of fine motor control. He has slight dyskinesia manifested by jaw quiver and occasional arm swipes. Pete’s biggest concern is falling. In the past, falls have resulted in face plants and a trip to the hospital with a broken back after tumbling down stairs. Fortunately, his medication seems to be working and there have been no recent falls.

Non-motor symptoms are worse for Pete. Soft speech and constipation (affecting about 75% of people with Parkinson’s) are bothersome, but his version of restless leg syndrome (where it feels like bugs are crawling under his skin) makes sleep difficult. Coupled with his REM sleep disorder (acting out dreams) fatigue is also an issue. During one episode of sleep disorder, Pete fell out of bed, flailed around and ended up with a broken computer and a few bruises.  What doesn’t bother him so much, despite the scary-sounding name is his Parkinson’s psychosis. This is manifested by hallucinations—seeing things and people that aren’t there. Unfortunately, a few years ago, Pete retired due to PD-related cognitive issues. He was easily distracted and found it hard to focus on a task for very long—important abilities for an engineering consultant.

Part of Pete’s daily routine is taking seven different PD drugs (in addition to medications for acid reflux and hypertension) five different times during the day in various combinations. The schedule and timing is critical for these substances to be effective.

Despite these constraints, Pete is concerned with other people and their feelings. He finds that most people pretend not to notice his motor symptoms (perhaps because they are uncomfortable or don’t want to offend) and he would prefer it if people simply made a comment or asked a question.  Walking, cycling and kayaking are his favorite outdoor pastimes. Pete’s favorite activity, ever since he was little, is tinkering. Pete describes this as “finding more complex ways to do simple things.” He summarized his overall philosophy: “While having to make accommodations for my symptoms, I will live life to the fullest extent possible.”

Each of us PWP’s (people with Parkinson’s) is a warrior—battling our symptoms and limitations. Despite our willingness to face adversity (do we have a choice?), sometimes we win the day’s battle and sometimes not. As my favorite panel (of more than 2,000) in the Parkinson’s Quilt states: Courage doesn’t always roar like a lion…  sometimes after a hard day, it whispers to try again tomorrow.

A.C. WoolnoughA.C. Woolnough
NWPF Blogger

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