Team Fox member, Robert J. Silver, PhD, practiced clinical and forensic psychology for more than 45 years before settling into retirement. Now immersed in writing, he recently published a book on his personal quest to continue living a fulfilling life with Parkinson’s, titled “Keepin’ On: Living Well with Parkinson’s Disease.” Throughout the memoir, Robert (Bob) shares anecdotes to encourage “fellow Parkinson’s patients to keep on keepin’ on.”
Available for online purchase, a portion of proceeds from book sales will be donated to Team Fox, 100 percent of which will go directly to The Michael J. Fox Foundation's high-impact programs to speed a cure for Parkinson's. This is a short excerpt from the first chapter of “Keepin’ On: Living Well with Parkinson’s Disease.”
I’m one of the lucky ones. For me, Parkinson’s is mostly a constant pain in the ass. When first diagnosed, I believed I was facing a grim life. But eleven years later, I’m far more active than many my age who don’t have a movement disorder. My life is anything but grim.
Yet, PD comes with daily challenges. Here is the detail of a day-in-the-life of living with Parkinson’s, as I experience it.
As with all mornings, I’m awake far too early — between 3 and 5 a.m. The most minimal motion demands my total concentration, focus and planning. I’ll need a repeated cocktail of medicines just to get through the day. At this time, I’m like one of those snakes you see on asphalt roadways, warming their bodies and their cold blood in order to move. Drugs are my asphalt-roadway equivalent. Once the medication reaches its full effect, I’ll likely have some two hours of relatively normal movement before I need the next dose.
I inch my way to the edge of our king-size bed, slowly get to my feet and shuffle toward the bedroom doorway and beyond. My wife Dianne’s rhythmic, soft breathing confirms that she’s still asleep.
When it’s finally 5 a.m., I can recharge my depleted neurotransmitters. I swallow the seven pills in one gulp. As I wait an hour for the medication to kick in, I keep eyeing the clock. By 5:40, the medicine may have been at work long enough for me to make my way back into bed.
There, Dianne begins to stir as I edge toward her. We search for a best-fit intertwining of our bodies. I absorb her soft, satisfying warmth pressed against me. My mobility has now returned, but I don’t want to budge. I’d prefer the deep restorative pleasure of holding her in my arms, but I must get going. The medication won’t last forever.
I bound from our shared bed, now appearing much like a normal person. My gait, balance and coordination show slight signs of this disease that torments me so. As the day proceeds, I continue my clock watching — juggling my time, meals and anticipated activity. This is the structure of a life lived in three-hour blocks of pharmaceutically-dependent time.
It’s an odd, if not bizarre, existence, this yo-yoing back and forth between periods of near immobility and times when I look almost normal. Right now I’m Clark Kent, donning his Superman costume and changing his identity. I’m near hyperactive, moving from place to place rapidly and almost gracefully.
By the end of the day, I’m emotionally and physically depleted. As I get into bed, I sense the medication wearing off. Lights out, I feel around for Dianne. As if in some slapstick comedy, I must first free my arm… the one I’ve managed to pin beneath the weight of my own body. As Dianne moves to meet my labored effort, I yearn both for her and for sleep.
I drift off, ruminating on an open question. With the coming dawn, which of the two distinct bodies that vie continually for dominion over me will be mine this day, this hour, this minute, this second? In any given moment, I don’t know which body will prevail. Will it be the one of paralysis or will it be the one of movement? The body of my dreams or the body of my nightmares?
Robert's book recounts tribulations and triumphs in his quest for a full life with Parkinson’s disease. He dedicates it to his fellow patients, as well as those who love and care for loved ones living with Parkinson's.