Thankfully, it’s only Parkinson’s: A Caregiver’s Perspective

By Karen C. Lefton

Doug’s gait was a bit lopsided. I first noticed it as he scurried toward the boarding line for Frontier’s flight to Cleveland. We were ending a glorious winter holiday in southwest Florida and he had made one last quick trip to the men’s room. Normally unremarkable. And unremarkable then, except that as he hurried toward Gate B7, he was not swinging his right arm. His wrist seemed attached to his belt buckle.

That observation flitted from my brain and did not land there again for nearly three years, as we were meeting with the neurologist. Doug is the best human being I know. Kind, gentle, smart, able. I didn’t realize men like him existed until we met when I was 40, the single mom of an 8-year-old. Doug was 43, tall, dark, handsome. Never married, still seeking the perfect woman, one fluent in Spanish. The best I could do is two years of introductory French and one semester of undergraduate study in Luxembourg. But after a seven-month courtship, I told him: “You should marry me. You’ll be happy.” One month later, he did. And we have been. He likes to tell folks now: “No one had ever given me a guarantee before.”

Then the world stopped.

We had a marital ritual of reviewing our agendas for the day each morning upon awakening. The patient problems he would be facing, the client challenges on my desk. It was a way of organizing the day and sharing Every Important Thing. On that early September morning, Doug mentioned that he would be seeing a neurologist that day. It did not occur to me that it would be for a neurological condition of his own. Doug was fit in every way, even though his arm still did not swing as he walked. When we’d make our daily treks around the neighborhood, I’d take his hand and swing it for him. It was such a little event, it was not even worth thinking about.

At dark, nestled in bed right before sleep, we’d review the day and share most important events. Doug went first: “I have Parkinson’s.”
“I reject that.” My response was immediate, certain, visceral.

But he’s a doctor. He knows Parkinson’s when he sees it, and especially when he has it. He did not have the traditional sign – tremors. But he did have micrographia – very small handwriting. Suspecting something wrong, Doug had reviewed his progress notes over the preceding five years and compared the handwriting. He showed me the samples. There was a marked decline. “Of course you have terrible handwriting,” I declared. “You’re a doctor.”

The diagnosis filled us with anxiety and dread. We had plans for the last third of our life and those plans did not include a movement disorder. When it came time for his follow up neurological appointment, we went together, Doug stoic, me seething. It all seemed so unfair. Doug was a young 65, exercised regularly, intellectually engaged. Doug’s neurologist had been his attending during residency. Doug called him “Jose.” I called him “Dr. R.” He was portly, jovial, and kind, but not nearly as optimistic as I willed him to be. I felt deflated, anxious and more than a little angry. Why did he get to be so healthy while the most loving man in the world had a future that suddenly looked so bleak? It was all so unfair.

Dr. R patiently explained the prognosis, how the disease would likely develop, treatment options, from a few carbidopa-levodopas to DBS – deep brain stimulation, where they implant an electrode in the brain and attach it to a programmable pulse generator – sort of like an external pacemaker for the brain. The symptoms can vary, but ultimately Parkinson’s robs people of part of their functional brain capacity; they develop tremors and stiffness, lose coordination and the ability to speak, often experience depression and dementia. It is not pretty.

Despite his best efforts, our fears were not assuaged. Dr. R watched Doug walk down the corridor, his right arm rigid at his side. “A classic symptom,” the neurologist said. “But that’s been going on for years,” I protested, remembering the rush to board our flight from RSW to CLE all those winters ago.

At the end of our hourlong consultation, Jose seemed sad but not unsure. They had known each other for 25 years, ever since Doug made the mid-life career switch from journalism to medicine. Now their relationship was shifting, from colleagues to physician-patient. Dejected, and feeling embarrassingly envious of others’ good health, we made an appointment to follow up early in the new year.

The diagnosis cast a pall on the holidays as we fretted over how our life would change. We’d eventually need a home with a first floor primary bedroom, no steps, accessible shower. We’d need health care powers of attorney and all the other documents to pave the way for when we were no longer able. We’d need to stuff decades of retirement dreams into a biennium, facing the cold realization that tomorrow is not promised to anyone and our tomorrow looked even less promising than it had.

Doug couldn’t eat; I couldn’t sleep. We barely put one foot in front of the other as reality set in. Then one Saturday evening, pre-pandemic, we stopped at Tito’s Mexican Grill for quesadillas and tacos. As we were boxing up the take-home, Doug heard a familiar voice and greeted Jose, dining with his wife in the next booth.

“How were your holidays?” the neurologist asked.
“Fine, yes, fine,” Doug responded.
“Stay warm out there.” With that, Jose ushered his wife to the exit.

Days later, we got a voicemail canceling Doug’s next appointment at Neurology and Neuroscience Associates, Inc., – no reason given. But news in the physicians’ community travels quickly, and it turned out that at age 63, Dr. R was not nearly as lucky as Doug. Shortly after that Mexican dinner, he went to sleep one night and did not wake up.

I was immediately ashamed of the anger and envy I had felt. Tomorrow is not promised to anyone.

On our next trip to Florida, we learned that our neighbor, Nancy, had been diagnosed with ALS. Nancy was the picture of serenity: petite, with a pixie haircut, a melodic voice and a smile that was her face’s default position. She came over to commiserate with Doug, and they chatted in the lanai about how retirement probably would not be nearly as long and joyful as originally planned. Nancy was determined to keep as much control over her life as a person with ALS possibly could, and she talked about the peace of deciding that when the time came, she would refuse hydration.

In anticipation of needing a first-floor bedroom and accessible bath, Nancy and Jeff moved away, but she remained a pen-pal to Doug and a huge support. Then we got word from Jeff. Doug and I huddled together on the couch, our computer perched on the ottoman before us, and attended her memorial service remotely from the comfort of our home.

When you get a diagnosis, you suddenly become aware of so many others afflicted with the same malady – or even worse It’s not just Michael J. Fox. It’s Linda Ronstadt, Neil Diamond and Alan Alda. It’s my daughter’s freshman roommate’s father in D.C. It’s a friend of Doug’s best friend in Chicago. It’s our sailing pal’s son-in-law in Wisconsin. It’s the husband of a community college provost in Ohio. It’s a Pulitzer Prize winning journalist in West Virginia. One million people in the United States are living with Parkinson’s, and nearly 90,000 are diagnosed each year. Most are men. Age and genetics make Parkinson’s more likely, but anyone can get it.

It changes your life. Doug needed to stop working earlier than he wanted. He just did not have the stamina to run a marathon every day. He missed his patients and the intellectual stimulation of solving problems and saving lives. In a letter announcing his departure, he wrote: “I have Parkinson’s Disease, and the symptoms have made it increasingly difficult to keep up with demands of a busy medical practice. …I have practiced at Fairlawn Family Practice for 22 years. I have known some of you that long. It has been a great ride. Thank you. I will miss you.” His courage made my eyes leak.

After that, he lost his sense of who he was for a while. Grayness colored everything; panic and dread lurked around every corner. When you have a progressive disease, the last thing you want is to see it progress. Still, we have been fortunate. Doug will never wake up and be Parkinson’s free, but he does wake up, and I wake up with him. Sometimes I just listen to him breathe and count my blessings. Our hearts still break for Jose’s wife and Nancy’s husband. Neither is as lucky as me.

Ever so slowly, we started putting one foot in front of the other again, swinging arms together. Gradually, we moved into acceptance and even gratitude, thankful that it’s only Parkinson’s. Doug is now five years older than Jose ever got to be. He’s been immersed in online Spanish courses, and he rocked it on the pickleball court yesterday.

As I write this, we’re back at Gate B7 at RSW. I am composing on my laptop; Doug is scrolling through his phone, reading about the atrocities in Ukraine. We are waiting for a flight to Maine, where the most adorable grandbaby in the world is waiting for us. We are fortunate indeed.