WAY OFF
“Your disease is stable. Your medications need a full evaluation.” My close colleague and friend Claudia, who happens also to be a neurologist, reassures me as we Facetime one another. Tracey, my beloved, strong, and devoted wife of 31 years, sits on the bed beside me and helps me tell Claudia what’s going on.
It’s 1:45 a.m.
I am experiencing what must be the tenth or twelfth severe “wearing off” episode in the last month or so. In Parkinson’s parlance, being OFF means you are experiencing motor fluctuations, meaning you are not getting the full benefits of your medications, namely, the control these medications typically have over your symptoms. As the disease progresses—and Parkinson’s, by definition, progresses—motor fluctuations begin to occur for most of us. In other words, we begin to experience OFF periods. Alternatively, ON means our meds are working as they should work, and our symptoms are, more or less, under control if not at bay. I have been fortunate in that I rarely experience OFF periods, at least until now.
But these current OFF episodes have been WAY OFF! If being a little OFF compares in its intensity to having to sneeze, being WAY OFF compares to having a full blown case of the flu. Each of my OFF events has come with almost paralyzing dystonia in my left foot (think unrelenting cramping) and off the charts dyskinesia (think wiggles on steroids). In my seven years of life with Parkinson’s I have never experienced either of these symptoms at anywhere near this magnitude.
STUBBORNNESS
I confess to not being as disciplined as I could be—should be—with taking my medicines on time. One needs to stay on schedule with Parkinson’s meds if one is to enjoy their maximum benefits. I also skip meals because I get busy at work and forget to eat. Both of these mistakes become ingredients in the recipe for Parkinson’s WAY OFF episode disasters.
Oh, and I had recently taken myself off one of my Parkinson’s medications—a dopamine agonist called Neupro—because my non-medically trained mind paired with a couple of late-night, sleep-deprived Google searches convinced me that I would sleep better without this drug.
DEEP FRIENDSHIPS
I spend an hour or so on the phone with Claudia. She instructs me to take some additional immediate-release carbidopa/levodopa, the pharmaceutical arrow that every Parkinson’s patient has in his or her quiver, or will, and this wonder drug slowly releases my rigid and cramped body and slows my violent dyskinesia as it pulls me toward an “ON” state. She also tells me to start taking Neupro again, which I do.
Feeling exhausted, I say to Claudia, “No more taking myself off meds without consulting my MDS (short for Movement Disorder Specialist (which is what neurologists who specialize in treating Parkinson’s are called)). I should not presume to be my doctor.”
Claudia flashes her kind smile with non-judgmental raised eyebrows.
My wife Tracey says, “Can you please remind him of that wiser choice, Claudia? Please? You might have noticed that he’s kind of stubborn.”
“I never noticed,” Claudia says laughing.
I thank my dear colleague and friend, hoping to express at least 1/100th of the gratitude I feel for her. She’s among the brightest, kindest, and most generous people I have known. Tonight, she helped me interrupt and end a terrifying and extraordinarily harsh Parkinson’s experience, educated me, and reassured my wife and me that this experience does not reflect any instability or sudden decline concerning my illness; only that my meds and practices of self-care need adjusting.
“I have to sleep,” I say. “In two days, I have my Led Zeppelin tribute show with my School of Rock bandmates,” I say.
You’ll be ready,” Claudia says.
Yes, you will,” says Tracey.
After thanking Claudia again, and apologizing for waking her, I say goodbye and wish her a good night’s sleep.
“I owe you…Big time,” I say.
“No you don’t,” says Claudia, “Just let me know how you’re feeling in the morning.”
I assure her that I will, and we say goodnight.
UNWAVERING SUPPORT
I apologize to my wife, who has never wavered in her support of my (our) life with Parkinson’s or in her steadfast confidence that I will manage this disease well for many years to come. I apologize to her for being so stubborn and unintentionally reckless with managing my disease and promise to take better care of myself.
“We’ve got this,” Tracey says. “You need to go easier on yourself and you need to stop trying to be your own doctor.”
I nod in agreement.
With Tracey lying next to me and our heads sharing the same pillow, I ask my Alexa to play Led Zeppelin for twenty minutes and drift off to sleep.
***
A DAUGHTER’S WISDOM
Two days later, I walk to my place on the stage with my Fender Precision Bass hanging on my body. My band buddies, Joel, Kat, Peter, and Lance are with me.
I have no dystonia and very mild dyskinesia that can easily be attributed to being a rocker!
Almost one year ago, my daughter Meredith challenged me to pursue something I had long regretted not doing, namely, learning to play a musical instrument.
I noted my inexperience, being 55 years old, my job demands, and especially my having Parkinson’s disease, which makes me have less dexterity in my hands.
She replied, “Dad, when you are through with the excuses, talk to Travis”
A GENEROUS TEACHER
Travis Foster, aka “T-Ravvy,” is the musical director at Austin’s School of Rock and the coolest cat I know. He’s also one of the most authentic people and among the best teachers I have known. He’s become one of my closest friends.
I had that talk with Travis that Meredith encouraged, and it changed my life for the better.
I started learning to play the bass, the coolest instrument on the planet, and I discovered a new kind of joy.
A BETTER LIFE
It’s the kind of joy that links to meeting people who make your life better, simply by being who they are and embracing who you are. I have in mind people like Claudia, as well as Joel, Kat, Lance, Peter, Gabe, Juniper, Rachel, Adrian, JD, Jaime, Mat, Doug, and others I play music with. I have in mind friends with Parkinson’s: Dean, Dan, Ethan, Bret, Jimmy, Chris, Jonathan, Bill, Gary, Keri, and so many others on the journey. With respect to all of these people, I have in mind those who make your life better because they gladly share with you their time, energy, experience, knowledge, talent, friendship, and more.
And they are cool!
Tonight, a group of friends and bandmates are playing a Led Zeppelin tribute show at a venue called the Empire Control Room here in Austin, with family members, friends, colleagues, and others here, cheering us on.
Standing on the stage and ready to go, I look out at the audience. It occurs to me that I have been afforded the great gift of playing my bass and sharing something I love with people I love, Tracey, our daughters Meredith and Holly; Jason McMaster, the funny and uber-talented Led Zeppelin Tribute Show’s director, several of my colleagues, friends, neighbors, and yes, Travis.
Two nights before, I lay in bed with the most painful and severe and unrelenting dystonia and dyskinesia I have ever had, all of it the result of my Parkinson’s meds needing adjusting, my stubbornness, and various life stressors that can come with seven years of life with an insidious, incurable, and chronic disease.
I wondered if I was experiencing the beginning of the end.
Now, I feel an almost indescribable gratitude and joy as Joel, Kat, Lance, and I riff on Led Zeppelin’s “The Ocean.”
Which seems appropriate.
Led Zeppelin is kicking Parkinson’s ass!
____________
Allan Cole is Dean of the Steve Hicks School of Social Work at The University of Texas at Austin, where he also serves as the Bert Kruger Smith Centennial Professor in Social Work and, by courtesy, as Professor of Psychiatry and Behavioral Sciences at the Dell Medical School. Diagnosed with Parkinson’s in 2016 at the age of 48, he is the author or editor of 15 books on a range of topics related to chronic illness, bereavement, anxiety, and spirituality. His latest books are Jumping to the Skies: Additional Lessons from Parkinson’s Disease (Cascade, 2023) and Riding the Wave: Poems (Resource Publications, 0ff-press soon). Other recent books include Discerning the Way: Lessons from Parkinson’s Disease (Cascade), In the Care of Plenty: Poems (Resource Publications), and Counseling Persons with Parkinson’s Disease (Oxford University Press). With filmmaker and his creative partner Vanessa Reiser, his documentary titled “The Only Day We Have” will air in April of 2024 on PBS.