When Ken Schiff answered my phone call, he quickly asked me to hold. When he returned a few minutes later, he said, “Sorry, today’s program was just finishing up.” He was referring to PMD Alliance’s free Neuro Life Online® workshops for people impacted by movement disorders. “Today’s was on neuropuncture,” he told me, an innovative electrical acupuncture therapy that may reduce tremors, increase cognition, and even slow the progression of Parkinson disease. “I rarely miss a program,” Ken said, “and this was one of the best!”
Miami Beach, 1960s
As Ken tells it, he’s “already lived about five lives.” As a boy, he was curious, which often meant he got into trouble. “I was in trouble a lot,” he laughed. “If I was missing, my mother knew to find me at the nearest construction site.” Ken’s dad was a builder and he developed a natural affinity for it. He was also adventurous. “As an eight- or nine-year-old, I would take the bus independently into town” – Miami Beach – “to participate in a local radio program.”
Ken’s curious nature eventually took him to college where he changed majors seven times and ended up with a degree in sociology with minors in, among others, biology, comparative religion, and anthropology. “I spent 25 years in emergency medicine,” training to be a paramedic beginning when he was a Boy Scout and eventually serving as a paramedic in the LA Fire Department. “I was a software designer for 30 years. I’ve driven trucks. I’ve been a salesman.” He even spent time in the Peace Corps in the 1960s, teaching house construction in Chile.
As far back as he can remember, Ken has been an explorer, inquisitively greeting the world and seeking answers to the unknown.
Coping with the Unexpected
Six years ago, in 2016, the unknown greeted Ken at his door: he was diagnosed with Parkinson disease.
“What was your initial reaction?” I asked him.
“Oh, sh*t,” he said. “That’s a medical term, by the way,” he laughed. Throughout our conversation, he’d effortlessly weave humor into even the darkest moments.
Ken told me he had been a care partner to his wife of 27 years. Four years before his diagnosis, she had passed away with Alzheimer’s. The same neurologist who originally diagnosed his wife with Alzheimer’s had now diagnosed him with PD. “The last thing I wanted,” he said, “was another neurodegenerative disease.”
But Ken didn’t linger in self-pity or uncertainty. His desire to meet life and find answers to its riddles swept in and, as he said, “I transitioned from ‘Oh, god!’ to ‘What’s next?’ in 30 minutes. I’m a very proactive person, I’m a fighter, I’m a fixer.”
And so it would be: Ken would greet this unexpected diagnosis with curiosity and study.
Getting Ahead of the Parkinson Disease Curve
It is an understatement to say that Ken is a proactive person. As he put it, “I’m aggressive in terms of learning,” especially when it comes to doing everything in his power to moderate and manage his disease. “On the day I got diagnosed, I left the doctor’s office and started researching and reading and doing as much as I could to educate myself.”
In fact, at the time Ken and I spoke, I had only been with PMD Alliance for a couple months, but the lengths Ken went to be proactive against Parkinson disease was already familiar lore to me. After reading about the potential of exercise, including water exercise, to manage symptoms, he built an above ground pool in his garage. “The pool is 7 x 10 feet,” he said proudly. “About 2200 gallons of water, heated to 98 degrees. I’ve even got a chair lift to get me in and out.” This is not the only intervention Ken has chosen. He exercises every day of the week, including physical therapy every single morning. “I had a PT table built tailored to me and I use it for strengthening, stretching, balancing.” In the evening, he gets moving in the pool. “Water is much more forgiving than air,” he laughed, referring to his balance. He’s also the consummate consumer researcher, having created an entire spreadsheet to determine the best fall alert device for him.
His research has also led him down an unexpected therapeutic path. “I was raised and very steeped in conventional, Western medicine,” he said. And he still believes in and relies on this medicine. But his quest to know more made him notice a flaw in the system: “No one ever wanted to look at the root cause. We don’t have a health care system; we have a disease care system.” He started complementing his conventional medical care with functional medicine, which includes a “boatload of supplements” and a plant-focused diet, admitting that he “eats a tiny, tiny bit of dairy. You know, some goat cheese from time to time.” He explains that, in terms of medicine, “there’s a place for everything” and he simply wants to use the best of what’s available from all medical traditions.
Cultivating Gratitude in Spite of Parkinson Disease
At the end of our conversation, I asked Ken if he has any advice for others navigating the waves of Parkinson disease?
“Don’t get it,” he laughed.
“More seriously,” he said, “be proactive. Remember: Parkinson’s is not a death sentence. You don’t die of Parkinson disease; you die with it. Let me tell you: you can have a damn good life even though you’ve been diagnosed with PD.”
Ken knows what it’s like to ride these waves and he says that “perspective is key.” Being able to step back and see beyond the hard days or understanding he’s part of a community of people navigating the same thing helps. Perspective cultivates gratitude.
“What are you most grateful for?” I asked him.
“Music. I used to be a singer. (Another one of my lives.) I was going to make opera my career.” While he was a student at New York University, he worked at the Metropolitan Opera. “It’s one of the reasons I bonded with Sarah,” he said, referring to PMD Alliance’s Co-Founder who also feels at home in an opera house.
“These days, Parkinson’s has given me some issues with my voice. I’m always trying to do exercises and project my voice. It’s difficult sometimes.” But he hasn’t grown bitter at the way Parkinson disease has changed his voice. “Can you hear that?” he asked me as he pulled the phone away from his ear and held it up. I could hear the faint sound of music in the background. “It’s opera,” he said.
It was a reminder: even after hard days, we can still appreciate the beauty of this life. May you pause today and notice the music.