A long life with Parkinson’s disease

By John Horchner,

On a chilly Saturday morning in early November, my wife and I visited the Bell Museum in St Paul to watch an animated film called “Mysteries of Your Brain.”

The film follows a curious girl and her crow companion who zoom along the paths taken by the neurons in the brain. The Bell Museum created this groundbreaking program with the help of science and content advisors at the University of Minnesota and Minneapolis Public Schools.

When I learned from the film that an elephant uses its brain to control 40,000 muscles in its trunk, I thought of movement disorders, specifically Parkinson’s Disease.

My mind went to Michael J. Fox and Muhammad Ali of course, but then quickly traveled back in time through all the years my Dad had Parkinson’s, the second most common neurodegenerative disease after Alzheimer’s.

I’d only been working for a few years when my mom told me the circumstances of my Dad’s retirement in 1990. She said it was because of the Parkinson’s Disease that he’d had for 10 years.

I was upset because this was retirement from a job Dad loved, and he seemed to be doing fine. He’d become one of the elder statesmen at his office.

However, one morning on his way to work in downtown Newark, New Jersey, he froze halfway across a busy street. I imagine my father looked at the two cars pointed straight at him, honking loudly as the traffic grew steadily behind them. Of course, they didn’t know that all that noise wouldn’t help him move faster; it made the situation worse.

Stress makes virtually all symptoms of Parkinson’s disease worse. Luckily, two husky workmen came from the side, lifted him and carried him across the street. 

“You’re talking about a very interesting thing that happens in a certain percentage of patients, and that’s the freezing … when initiating a movement can be difficult.”

This is what I learned from Dr. Jerrold Vitek, professor and chair of the Department of Neurology and director of the Udall Center of Excellence for Parkinson’s Research at the University of Minnesota.

I learned of Vitek from Karrie Molitor, who conducts outreach as program manager of the MnDRIVE Brain Conditions team. She had a table as part of the day’s events at the Bell Museum.

Vitek explained, “Some people will respond to medication for this (freezing). If it doesn’t respond to meds, it doesn’t seem to respond to our approach…”

The approach Vitek’s lab takes, with current patients as well as those participating in new studies, is to insert a small pacemaker-like device in specific parts of the brain that send electrical impulses to make up for imbalances caused by the degeneration of circuits caused by Parkinson’s Disease.

Called Deep Brain Stimulation, or DBS for short, it’s been around for years. Now, it’s a subject of increasing study and excitement because of the accuracy of imaging and feedback systems. Some of the uses they are still studying; some they are treating already.

“If you see one Parkinson’s patient you’ve seen one Parkinson’s patient. Freezing can be one of a constellation of symptoms,” and everyone is different, he said.

DBS is not for everyone, but if it is determined that it may help, where they place the brain stimulation device is extremely important.

“It’s all about location, location, location,” he said.

Most who develop Parkinson’s are initially easily treated with existing medications. That was the case with my dad.

My father was diagnosed with the disease when he was only 50, about 10 years before he retired, when I was still in high school. His whole life up to that point had been all about physical exercise and movement.

Dad was the guy who got everyone to play touch football for Thanksgiving, walked to the train station every day, biked home in the rain. He preached incessantly that my brother and I and sisters should walk everywhere as well as ride a bike. He always had the dream of hiking the Appalachian Trail and skiing the Swiss alps.

We did ski the Swiss Alps together, seven years after he was diagnosed with Parkinson’s. I bought discount airline tickets to Belgium, three countries away. We wound our way around the Swiss Alps and arrived in St. Moritz the next morning, on New Year’s Eve Day, without a hotel reservation. We skied the backside of the mountain by mistake and had to take a train back to town.

When we arrived back in town, we discovered that I had lost the keys to the rental car. But it all worked out. It’s that kind of determination that helped Dad in his fight against Parkinson’s Disease.

“The problem with medication is that when you first start taking it, it works pretty well … but over time, as you lose more of the cells that make dopamine, there’s no buffer anymore … as time goes on, it lasts less long, and you have to move the doses closer together and then you get extra movements and people start to move involuntarily,” Vitek said.

With DBS, he said, if they get a good response, they may be able to extend the time of movement each day.

Dad would have loved this idea. He moved whenever he was able.

At home, after he retired, Dad took to wearing knee pads and then elbow pads in case of falls during his walks. Sometimes, he would take his bike out and crash on the side of the road. Neighbors would call my mom.

After years of this, my mom had enough and insisted he go to a nursing home.

Still, he refused to sit down. The first nursing home facility was an hour from where we grew up. It was at the New Jersey Shore. I knew that wouldn’t last long.

On our way out the door of the lobby of the place on one visit, a co-conspirator of his tried to follow us out the door, pushing his walker with stuffed animals tied to the cross bar.

“You better stay,” my dad said to his friend.

The second place Dad liked better because there was an ice cream shop within walking distance. I also knew that was a sign of trouble. After a year or two at that facility, he developed a contentious relationship with the staff. He had bouts of paranoia and psychosis, which we initially thought were due to his medication. He called me claiming that the nursing staff was out to get him and there was a bulldog under his bed so he couldn’t leave.

We evaluated the situation and determined it wasn’t all paranoia; some of it was stress caused by the nursing staff. I contacted the corporate office and negotiated a move to another place within their system.

At the third facility, things seemed to go much better. He got along well with the staff. The place was also closer to where we grew up in New Jersey.

My mom would visit every week even though she’d remarried. My sisters both lived nearby at the time, and they also would visit often. My wife and I would sign him out with all his medications and even take him skiing.

There were holidays, birthday parties and other events, and Dad was largely present for them all. There were plenty of scares with his falling and choking. He was usually hunched over and sometimes swung his arm back and forth wildly. We just loved having him there.

I remember when a nurse called three weeks before he died saying they considered him at the end of life because we’d refused a feeding tube and he was unable to chew or swallow. I should plan a visit soon. He was 84. He’d had the disease for 34 years.

Yes, he was in a nursing home for 15 of those years, but this last place, where he was for 12 years, everyone had made it work.

It was early fall and I sat at his bedside and looked out the window of his room at a maple tree, just a few golden leaves left. It was a beautiful day. I asked if he wanted to go pumpkin picking. He was able to swing his head around and look at me. He seemed a little ashamed. Then he gathered himself.

“Let’s give it a go,” he said softly. And we did. 

John Horchner lives in St. Anthony Park and is a professional writer.

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