In my exam room there is a piece of writing hanging on the wall which I often find people reading as I enter. Many feel moved by the words. Some knew Ken Nye, who put these feelings down for us to read. In those cases, I am treated to a story about Ken. They tell me how he helped them, how he was there when needed, how he taught them, how he was just a great guy, or a great friend. “He cared … he turned my life around … he listened … he was a mentor.” I have heard so many good things standing there. These days the stories and comments are always in the past tense, because Ken himself passed in October 2012.
Ken was someone worth knowing.
I met Ken and his wife Ann in 2007 when I first moved to Maine. They came to my old office in Westbrook for a consultation regarding a diagnosis he had carried since ten years earlier, when he was 55. I remember that Ken told me he had enjoyed singing with the church choir, and had been having difficulty with his voice. The falsetto, in particular, was breaking up, and this was not normal for him. He thought it might be related to aging. Over the next year, however, his left arm did not swing while walking. There was a gradually worsening stiffness in his muscles. When he would extend the arm to reach for something, he felt a ratcheting sensation in the elbow. He learned he had Parkinson disease and began medications, which did help symptoms, but did not slow the progression.
Ken had been a very active person all of his life and did not want this disease to slow him down. He was educated, and an educator. He taught high school in Evanston, Illinois; was department chair of one of their four schools (combined studies department – English and social studies); and became principal of Rumford High School, before taking the same post Yarmouth High School. During that stint, he was diagnosed with PD.
One of his first concerns with PD was what this would mean for others. He worried about his wife, Ann, his family, his students. However, he quickly decided to be open about PD. He would still go on to become an assistant professor in the graduate program at USM, where he taught teachers who wanted to be principals and athletic directors. Ken started the advisor/advisee program, independent study, and community service, which many other high schools picked up and still use. He was a Renaissance man. For about five years in Yarmouth, he co-taught a senior English class while he was principal. While he was at USM and after he retired, he gave lectures on poetry at middle and high schools, and gave area schools class sets of some of his books for poetry units. Student poetry and writing awards at Yarmouth and Freeport High Schools are known as the Ken Nye Awards.
Ken and Ann were very involved in Maine PD community. They were members of the Young Onset PD Support Group, and initially attended meetings at the Curtis Library in Brunswick. The group moved to the Nye residence in Freeport for a time, before heading on to South Portland.
Ken’s disease progressed, and he became less able to do some of the things he enjoyed. He had always been the kind of guy who would climb up on the roof and fix something himself. Ann and Ken had raised their family on a 20-acre farm in Rumford Center with Black Angus cattle, bees, and gardens. During the last 30 years of his life, living in Freeport, Ken was just as ambitious. With PD, he eventually had to find interests that conformed to some of his limitations with balance, and the newest devil to find him, insomnia. In the sleeplessness of night, he found poetry. I remember him telling me he attended a weekend meeting and took a chance by sharing his writing with others. He found that he was able to express himself. Ann looks back now and tells me that his four books of poetry probably happened because of Parkinson disease. It was an outlet he could use, and it meant a lot him. I would say it meant a lot to others too.
Ken also enjoyed casting and painting small figures of soldiers, primarily of the British Empire, but also of the U.S. Civil War. He had collected similar figures as a boy, and took up creating his own in the mid-1980s after learning the craft from a friend and former professor. As time went on, he produced these for family, always trying faithfully to define the uniform, the character, the era. I saw some of the tiny soldiers and was impressed by the skill and patience each had taken. I was more impressed by the body of knowledge needed to create them. He loved history, and enjoyed not just the factual side, but reading historical fiction, twice through the 20 novel set of the Aubrey-Maturin series of nautical novels by Patrick O’Brian. I would often find him in an exam room with book in hand, Ann at his side, her own book open. The two were a perfect pair.
Ken inspired others. He was a peer mentor, was active with PD support groups, attended fundraisers, and was involved with planning and coordinating events. He attended PD exercise classes at Ocean View and supported exercise as an intervention. Even after he had disease for many years, he built a shed at his home, was the president at his church, and head of the Steeple Committee. Ken enjoyed sailing and when it became too unsafe, regretted that loss in a rare moment of sadness with his condition.
I think the disease was particularly hard in the last few years, but there were complications from other very serious health concerns. Falls, spills, injuries, and concurrent illnesses took their toll, and at times Ken was hospitalized or met acutely with the medical profession. Still, Ken was an inspiration to me. He took most of this in stride and with dignity. He laughed once recounting an ER experience for a painful fracture, and truly appreciated those who had cared for him. This was a recurrent theme. Many times I have thought about this, and hope I have learned from him something about how to face illness.
I have to give a small confessional as well. I fumbled about on the day he told he was close to dying. There were tough decisions, and rather than briefly extend his life with difficult treatments for an illness outside of PD, he had decided to stop and take only comfort measures. I thought he was feeling desperate, and said so. I thought he was giving up. I had it wrong. With Ann and their daughter Amy at his side, he told me “No, I am not desperate. I am taking control.” And he was.
At Ken’s celebration of life a few months later, I was moved again, to hear about the life of Ken Nye from his closest friends and family. He touched so many, and we all better for it.
In Sickness and In Health
by Ken Nye
– included with permission from Ann Nye
Eleven years ago, when the doctor looked me in the eye and said, “Mr. Nye, you have Parkinson’s disease,” it never occurred to me that the “you” to whom he was speaking included another person who wasn’t even in the room.
But as the years have passed, and this chronic, progressive disease has become more of a nuisance, I have come to understand that “you” meant not me alone, but Ann, too.
There are buttons I cannot button, zippers I can’t get started. There are organizational tasks I used to do routinely that have now been passed to Ann. There is medication to be sorted into little square cups of a daily pillbox, ready to be imbibed every three hours through the day so I can function almost normally. There is a joint pocket calendar maintained by Ann to be sure I get where I am supposed to be, when I am supposed to be there – and she is the driver. There are foods that I shouldn’t eat, but sometimes do; things I shouldn’t do, but threaten to. So she watches over me, like a nurse working a 24 hour shift that never ends.
But she never complains. And when I get angry or frustrated that we have to deal with all of this pain-in-the-neck crap, she brushes it off, cools me down, never offering pity or even sympathy, just acting as if this is all part of life and the promise we made to each other a long time ago.
She meant every word of that “in sickness and in health” stuff 45 years ago.
“Mr. Nye, you and your wife have Parkinson’s disease.”
She never blinked an eyelash.
Am I a lucky man or what?
I love my work with our community members with PD. When I work with these folks, I see power, resourcefulness, and resilience. Thus far, I have had the pleasure of working with patients with varied backgrounds including artists, business men and women, homemakers, social workers, fire fighters, ministers, ship builders, and more. With each experience I take away something new that I can share with others, be it an alternate technique for putting on a pair of pants or a novel strategy to help gain control over episodes of freezing. It is their resourcefulness that helps me to stay fresh in continuing to support others in their pursuit of a better quality of life.
r de Garmo
