Parkinson's disease doesn't stand in the way on the big day

How one man, with the help of his family, lives with Parkinson's.
Published April 2 2015
Updated April 4 2015

Every father dreams of walking his daughter down the aisle at her wedding, sharing that unforgettable first dance.

And my dad, Daniel Smith, 61, was no different.

But he was a little nervous. Having been diagnosed with Parkinson's disease 15 years ago, he wondered how the tremors, freezing and cramping — symptoms of the progressive nervous system disorder — would impact him on the big day.

"I want to be on my 'A' game," he'd always say.

With my sister, Lisa, 32, getting married March 14 outside of Ann Arbor, Mich., my dad did his best to prepare. He took dance classes, which he admittedly "flunked," not being able to be in synch with the beats. (That's something I've definitely inherited.)

Little did I know he had a surprise in store. At the reception, he and Lisa began the father-daughter dance, with Nat King Cole's Unforgettable playing. A few seconds in, he stepped away, waving his arms to cut the music.

A few chuckles came from the crowd. I was worried, wondering if my dad was having an episode.

Then Taylor Swift's Shake It Off came on. "And it's going to be all right."

It certainly was. My dad and sister began the up-tempo dance, shaking their arms — and yes, hips — drawing a roar from family and friends. Talk about unforgettable. The two thought the song was perfect, poking fun at the shaking symptoms of the disease.

"I absolutely have no rhythm at all," my dad has said. "Glad I can blame the Parkinson's!"

Whether you're "shaking it off" in a dance or merely walking the neighborhood, exercise is an important factor in managing Parkinson's, an incurable disease that affects 1 million Americans. That's why the National Parkinson Foundation is holding a Moving Day event April 11 at the University of South Florida in Tampa. There will be a 5K walk, as well as several other activities (tai chi, boxing, line dancing, yoga) and a kids zone with games and prizes. The goal was to raise $100,000 to help create fitness classes, support groups, research and other programs for patients and families in the bay area. Fortunately, more than $100,000 already has been donated, with 70-plus teams participating.

My dad will be there, as will my sister, along with several family members and friends on our Team Wolverines. (You're welcome to join; go to www.movingdaytampabay.org.)

"I can't emphasize enough the importance of exercise and fitness," my dad says. "It won't halt your decline, but it should slow it down."

• • •

In the mid 1990s, my father was misdiagnosed with psoriatic arthritis. He had some tremors, which led to bad handwriting (another thing I inherited) and dry skin.

But in 2000, further tests revealed that he had Parkinson's. I was a sophomore at the University of Michigan, and when I found out, I was stunned. My father has always been my rock, my best friend. You search Parkinson's online and a couple of words stand out: "progressive," "incurable." I'd watch actor Michael J. Fox struggle with it, along with former boxing champion Muhammad Ali.

I was scared. I wasn't alone.

"Some misconceptions are such that a lot of people are afraid to get diagnosed. People think it's a deadly disease," said Dr. Christos Sidiropoulos, senior staff neurologist at Henry Ford Hospital in Detroit, and also my dad's doctor. "Usually it's a big pain in the neck. Some small percentage of patients have horrible progression, but a small proportion."

My father managed the disease fairly well. He continued to work as a purchasing manager at Bunzl Distribution until 2012, transitioning more of his communication from phone calls and meetings to email. We'd still go to sporting events together, like the 2004 Rose Bowl in Pasadena, Calif. The disease advanced, taking away some of his independence, and confidence. Still, he never complained.

"I'd rather focus on the positive things and how blessed I am," he says.

• • •

Though my dad didn't want to stop working, he knew the time had come in January 2012, after having deep brain stimulation surgery the year before. It was the only job he ever had, having put an ad in the newspaper after graduating from Michigan, starting off as a buyer.

"I miss all the great relationships I had formed, the thrill of negotiating, the positive self-esteem that came with being competent at something," he says.

But, he looked at the bright side. The DBS surgery pretty much eliminated the tremors and some freezing, though the cramping and sometimes slurred speech remained.

"My guess is I'd probably be in a wheelchair if I didn't have the DBS," he says.

He definitely hasn't lost his self-deprecating sense of humor or, as we call it, the "Smith wit." He may be a little bored in his retirement, but he keeps busy. He takes care of the Grand Blanc condo he shares with my stepmom, Veronica, his wife of 26 years, doing a lot of the laundry, cleaning and some cooking. They play cards, watch Shark Tank and are very involved in their church.

"The people who we should be talking about is our caretakers," my dad says. "They are the wives, children and other unsung family members. They are the true heroes."

My dad's support system isn't just limited to home. He works out four days a week at the local gym, some with a personal trainer, Kris Hilliard. "The progress he's made is amazing," Hilliard said. "Not only in his strength, but his confidence." Sometimes, he'll exercise with a couple of other Parkinson's patients — "Parky's" — he met through his local chapter support group. They get lunch together once a month.

"It helps with that feeling of detachment that usually occurs in Parky's," he says.

Like many Parkinson's patients, he carries a health alert card in his wallet.

"I am ill. I have a condition called Parkinson's disease, which makes me slow, sometimes I can't stand up or speak. I am not intoxicated. Please call my family for help."

Sidiropoulos said that while there's still no cure for Parkinson's, there have been some improvements in medications, and more research is being done each year.

My dad is hanging in there.

"He's a fighter," Sidiropoulos said.

And, apparently, quite a dancer.

"The importance of being able to participate with Lisa in the daddy-daughter dance at her wedding is beyond my capacity of verbalization," my father says. "All I can say is that I am truly one lucky dad."

And I'm one lucky son.

Joe Smith covers the Tampa Bay Lightning. Contact him at joesmith@tampabay.com. Follow @TBTimes_JSmith.

   
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