SIDNEY — It’s a book written from his heart and Robert K. “Bob” Zimmerman, of Sidney, hopes it will help others who have been diagnosed with Parkinson’s disease.
Zimmerman was diagnosed with Parkinson’s 27 years ago, when he was 42. His book, “Living with Parkinson’s,” tells his story from pre-diagnosis until today.
“When people are first diagnosed, they are scared about what’s going to happen to them,” said Zimmerman. “This book tells our family’s experience with the disease.”
Zimmerman is a research advocate for the Parkinson’s Disease Foundation in New York City.
“I was motivated to write the book by the Parkinson’s Foundation,” he said.
He has been trained to be an advocate and help promote the awareness of Parkinson’s disease. He also encourages people to participate in clinical trials dealing with the disease.
“I’ll be donating all the proceeds from the book to the Parkinson’s Disease Foundation for research,” he said.
More than 1 million people in the United States, said Zimmerman, are living with Parkinson’s disease. Parkinson’s is a debilitating condition that affects the brain, specifically the movement center of the brain. In a person with Parkinson’s, the neurons in the brain, for an unknown reason, are dying. Those neurons create a chemical called dopamine. As the amount of dopamine decreases, the person is unable to control his movements. Symptoms of the disease include shaking hands, muscle rigidity, slowness of movement, gait problems and losing balance. Patients may also suffer from depression fatigue, sleep disorders and dementia.
“It was almost a year before I had the actual diagnosis,” said Zimmerman. “I had a slight tremor and my leg dragged. I put it down as stress because my mom was dying of lung cancer. After she died, it continued and I went to my family doctor. I saw four more doctors before the diagnosis.”
“They have to do the diagnosis from observation,” said his wife, Judy. “It was a matter of ruling out what it isn’t. There are no tests for Parkinson’s.”
It was on Dec. 19, 1988, that Zimmerman went to Ohio State University Hospital to be seen by a physician there and got the Parkinson’s diagnosis. The doctor arranged for Zimmerman to see a movement specialist.
“My appointment with Dr. M was scheduled for 8:30 a.m. so I had to leave Sidney, Ohio, early (about 7 a.m,) to drive the hour and half to The Ohio State University Medical Center,” Zimmerman writes in his book. “He walked into the examining room and began with the usual questions. After observing me, he said, ‘You have Parkinson’s disease.’ He then handed me a prescription for Sinemet, which is the first medication that doctors usually prescribe for PD. At that time, it was also the most effective medicine that could be taken. He then asked me if I had any questions. I began asking questions like ‘What causes it? What can I expect in the future? What are these pills supposed to do? Will I have to take this medicine for the rest of my life?’ He looked at me and said, ‘You had no clue that your condition was PD did you?’ I nodded. He very patiently answered all of my questions and even went a step further. He called the Ohio State Movement Disorder Center’s neurologist, Dr. P, and made an appointment for me that same day at noon. I was sure that Dr. P was giving up his lunch hour so he could meet with me. I will always remember the kindness of the two OSU Medical Center doctors. I think they both understood my feelings and fear, confusion, anger and frustration upon finding out the diagnosis of PD.”
“I was relieved after I found out it was Parkinson’s because it wasn’t multiple sclerosis or Huntington’s disease,” said Zimmerman. “We knew what we were dealing with then.”
At the time, Zimmerman was the superintendent of the Shelby County Board of Mental Retardation and Developmental Disabilities. With the board’s support, Zimmerman continued his professional career.
“Initially, things didn’t change,” said Zimmerman. “I continued to work, continued to volunteer and we continued to raise our children.”
At the time, their six children ranged in age from 2 to 12.
The Zimmermans began learning to live with the PD diagnosis. He cites his positive attitude, and that of his family, for helping him to deal with his diagnosis. After more testing, Zimmerman made the decision to tell his friends and co-workers. And that decision also included telling their six children.
“Judy and I decided I would talk to each kid alone to explain PD on his or her level. Trying to explain it to a 2-year-old was a bit challenging,” Zimmerman writes. “They asked some very astute questions. One of their questions was whether I’d have to use a wheelchair some day. Another good question was, ‘Will you have to go to a nursing home when you get older?’ I had to answer them truthfully that I really didn’t know. One asked me, ‘Why can’t you just be cured?’ I told them that we can always hope. I told my 5-year-old daughter that I was going to work very hard so that I could walk down the aisle with her at her wedding. This little encounter brought a tear to my eye.”
“In 2004, I got lymphoma. With that on top of Parkinson’s, I didn’t feel I could do a decent job at work. I had been superintendent for 21 years,” he said.
He underwent chemotherapy and was declared in remission on Aug. 1, 2004.
During the past 11 years, Zimmerman was busy writing his first book, which told stories of the people he had served in the MR/DD field.
“I shared what they had taught me,” said Zimmerman. “I learned more from them than all the schooling I received.”
He also served as the interim director for the Shelby County Libraries.
In the fall of 2005, his life changed again as he considered deep brain stimulation (DBS) surgery to help control the tremors and other symptoms of Parkinson’s. He traveled to the Cleveland Clinic, where both he and his wife underwent counseling prior to the surgery.
“It was a miracle surgery,” said Judy. “Twenty-six years (since his diagnosis) and he’s still functional.”
Zimmerman said the surgery was something he couldn’t pass up.
“The advantages of it were so good that it made sense to have the surgery,” said Zimmerman. “There was only a 3 percent chance that anything would go wrong.”
The doctor who did the surgery is the “guru” of DBS, having done the procedure more than any other physician in the world.
In May 2006, Zimmerman had the surgery. Two holes were drilled in his forehead and two in the back of his head. A halo was placed on his head and he was taken to surgery. He was bolted to the operating table and then put to sleep while two holes were drilled into his skull.
Zimmerman was brought out of the anesthesia while the doctor put the wires into his brain. The surgery lasted 12 hours.
“The 12-hour surgery was on a Monday. I stayed overnight in recovery. On Tuesday I was moved to a room and Wednesday I came home,” said Zimmerman.
Two weeks after the surgery, he went back to the Cleveland Clinic so the wires could be hooked up to battery packs. Then the simulator was turned on, which helps control the tremors.
“After she reached the best settings, I couldn’t believe how good I felt. The tremors on the right side of my body were completely eliminated as was the dyskenisia,” writes Zimmerman. “My muscles seemed to loosen up also. This was all on the right side of my body, while the symptoms were still present on the left side of the body due to the fact that side wasn’t hooked up yet. They couldn’t turn it on due to the coiled wires.”
A second surgery was performed in January 2007 because the wires on one side didn’t work as they were supposed to.
In the years since the DBS, Zimmerman has faced other medical challenges. His lymphoma has come back for a third time. He has suffered a broken hip and battled prostate cancer.
“The whole idea is to have a positive attitude and that you can overcome or deal with anything,” said Zimmerman. “I’ve had a very supportive family and my children have always supported me. They are all independent and self-sufficient. They call all the time and ask how dad’s doing.”
“There is a role reversal for them,” said Judy. “If we’re going anywhere where there’s steps, one kid is behind him and another is in front of him. Or they walk beside him if there’s a curb.”
Their children are spread across the United States: Greg lives in Chicago, Geoff lives in Cincinnati, Mark lives in San Diego, California, Matt lives in Albuquerque, New Mexico, Sarah lives in Eugene, Oregon, and Mary Henthorn lives in Florence, Kentucky.
The doctors, said Judy, are amazed at how her husband keeps overcoming the challenges thrown his way.
She penned a chapter in her husband’s book about her role as a caregiver and partner in his journey with Parkinson’s.
“Forty years and six kids ago, Bob and I said our ‘yeses’ very loudly and clearly to our wedding vows,” she writes. “‘In sickness and in health … Yes.’ Of course. We are both healthy. No problem. ‘For better or worse … Yes.’ Again, no problem. What optimism. Little did we know that Bob would be diagnosed with Parkinson’s disease at age 42, plus develop there different cancers plus have a long recovery from a broken hip in the last 10 years.”
Zimmerman fulfilled a promise he made to his daughter all those years ago. In October 2014, he walked daughter Mary down the aisle as she married her high school sweetheart. He danced the traditional father-daughter dance. And all, he said, without the use of a cane, walker or wheelchair.
Zimmerman’s book is available on Amazon.com and from the publisher, American Star Books. Zimmerman can be contacted at 492-4364.
