Living well with a degenerative disease is the topic of a new book by Robert J. Silver. It is also the theme of his life.
"Keepin' On: Living Well with Parkinson's Disease," chronicles Silver's journey since the diagnosis of his disease 13 years ago. When he found out he had Parkinson's, Silver pressed the doctor for some insight into what his life would be like in 12 years. "It will be grim," said the retired Taos physician.
"My life is not grim," said Silver. "Parkinson's disease is inconvenient. It is a pain to live with. But, I don't want other people to swallow that kind of pronouncement that was given to me. Perhaps I do things that are atypical for people with Parkinson's. The disease does vary from person to person; we are all different. But I'm not going to give in to that view."
Indeed, Silver is proving that life can be full, rich and active, even with the difficulties of Parkinson's. He continues to ski, play tennis and golf, and be involved with many community efforts. Silver and his wife Dianne Frost have summited Wheeler Peak, the highest mountain in the state at 13,161 feet, twice in the past three years.
"Keepin' On: Living Well with Parkinson's Disease"
Silver's new book chronicles the successes and challenges that he has experienced. Silver has difficulty with mobility and balance. He must take a dizzying array of medication on a strict schedule to have relief from his symptoms. Even following the schedule, the medication doesn't work at times, and he finds himself in a difficult situation, unable to move very well.
An estimated 10,000 people in New Mexico have been diagnosed with Parkinson's disease, one of several movement disorders that can severely impact quality of life. About 250,000 New Mexicans live with some kind of movement disorder.
When Silver learned that he had the disease, he had no interest in writing about it. Silver is retired from a long clinical and forensic psychology practice and had published one book, "Tributes and Tirades: Taos Life and American Politics" (Nighthawk Press, 2013). "For eight years, it was the last thing I wanted to write about. I resisted. Not because I wanted to keep it a secret, but because this disease already occupied so much of my consciousness that I didn't want to grant it any more space."
That changed for Silver on Father's Day 2013 after he had been hiking to Williams Lake. He, his wife, and some friends stopped at the Bavarian restaurant afterward. When another couple entered the restaurant, Silver noticed them right away. "I could tell just by looking at this man that he likely had Parkinson's. The couple was seated next to us and I asked his wife, 'Is your husband a member of my club?' She said,"Yes, he has Parkinson's.'"
As they began to talk about their experiences, they realized they had been treated by some of the same medical professionals. Silver shared his positive experience with his current doctor in Albuquerque and urged the man to seek her out. "In the next few days, I began to think about this experience. It seemed so helpful for me to be open with him. I began to feel a moral obligation; I had to write about it," he says.
The book was released Sunday, (March 11) at the Harwood Museum in Taos. The Arthur Bell Auditorium was filled to overflowing and some people had to be turned away. The crowd, some of whom had Parkinson's themselves, listened as Silver chronicled his experiences.
He said, "I am moved and honored to have you here. This book is especially important to me; these words are directed from my heart."
Silver read several excerpts from the book that detail his day-to-day challenges and uncertainties of his life. Among the topics he addresses are the losses he has experienced as people move away or pass on.
In a particularly poignant moment, Silver shared the story of the passing of his friend and physician Dr. Larry Schreiber, who died in 2016 from a stroke after a struggle with Parkinson's. Silver describes hearing Schreiber read from his own memoir about his fight against the disease.
His courage so inspired Silver that the next day, he attempted to summit Wheeler Peak. "Larry's words from the prior evening stayed with me, filling me with determination to do my best to reach this unlikely goal for someone with Parkinson's disease…I did, in fact, reach the summit that day. Had Larry known of my plan, he would have been pulling for me, as I would have been pulling for him. My continued journey with Parkinson's will be lonelier and harder without him. He was taken far too soon," Silver read.
Along with the difficulties and losses, Silver shared the precious moments of inspiration he has experienced, including help from strangers and support from friends and neighbors. Although the topic is a serious one, the book is written with humor and a hopeful perspective on life.
The book is dedicated to his wife. She is foremost among his supporters, but the community has also pulled together to support his efforts.
"So many people have contributed to the project that I have started to feel that it is not my own project but theirs," said Silver. "While I may be the voice and public face of this book, its heart, soul, and inspiration is the collective generosity, support and labor of the Taos community and beyond."
He is grateful for the book editing provided without charge by Barbara Scott and the Harwood's donation of the space for the book reading along with so many others who encouraged him to write and helped him learn how to write. All proceeds from the book's sales will be donated to three organizations that help fund research and support for Parkinson's disease.
Among the organizations is the Michael J. Fox Foundation for Parkinson's Research. Jocelyn Scherr, the associate director for advancement, came from New York City to attend the book release event.
The foundation was started in 2000 by actor Michael J. Fox after he was diagnosed with Parkinson's disease. His co-founder was Debbie Brooks. The foundation funds research for disease-modifying therapies that slow or stop the course of the disease, therapies that improve quality of life manage tremors, gait and balance, and barriers, such as finding a biomarker for the disease.
"There is no objective thing in the body to measure for diagnosis. It is diagnosed by looking at symptoms. If we could find a biomarker, that would really be a game- changer for disease management and drug development," Scherr said.
"The book is a great resource for people who are newly diagnosed with Parkinson's," Scherr said. "Bob uses humor and stays positive, but is also honest, which I think will be appreciated by everyone. He talks about staying active, an important lesson for all of us."
Polly Dawkins, the executive director for the Davis Phinney Foundation for Parkinson's in Boulder, Colorado, attended the event as well. The foundation was founded by former professional cyclist Davis Phinney after he was diagnosed with Parkinson's at age 40. It provides support for people who have Parkinson's to live well now.
Dawkins said, "Bob conveys his keen understanding of what it is like to have Parkinson's disease. He is able to draw the reader in and tell a story. It is very uplifting."
Hope for the future
While there is no cure now for the disease, one may be on the horizon. Silver recently returned from a visit to the Salk Institute for Biological Studies in La Jolla, California, another recipient of proceeds from the sale of the book.
The Salk Institute focuses on both research that can contribute to understanding the disease and also nurturing the next generation of researchers. Silver visited with a Parkinson's disease research scientist. "I came away from there electrified with this feeling that help is on the way. It is not around the corner, but in my lifetime there may be a cure," he said.
To purchase the book, visit local bookstores or order it from nighthawkpress.com or on Amazon.