Some Pamlico County residents who were diagnosed with Parkinson's disease have found hope in a new type of therapy; using exercise on tandem bikes to delay the progression of the disease.
Parkinson’s disease is a degenerative disorder of the central nervous system, in which brain cells progressively die. According to the National Institutes of Health, about 50,000 people are diagnosed each year in the United States, and about a half a million people have the disease. Since there’s no way to detect Parkinson’s using brain imaging, it usually isn’t diagnosed until symptoms, such as tremor, rigidity and impaired balance are present. The average age of diagnosis is 60, but people can live for years with the disease and not know it. Exercise Physiologist at Duke Health Sara Edwardson says people with Parkinson’s disease slowly stop producing a neurotransmitter called dopamine.
“Since dopamine is responsible for muscle activity and motor function, it’s directly correlated with sending messages to the brain. So we see these issues with overall motor function with the decrease of dopamine levels.”
According to the National Parkinson’s Foundation, when 60 to 80 percent of the dopamine-producing cells are damaged, symptoms of Parkinson’s disease start to appear.
“We see people’s gait is affected, the ability to initiate or seize movement, stiffness, rigidity, one of the most common symptoms is a tremor. Some people may have a very bad tremor, but they may walk just fine. Whereas some may have a shuffling gait but have no tremor. Everyone has sort of a different symptom that they’re working to maintain and reduce.”
Melinda Penkava was diagnosed with Parkinson’s in 2015. She says the disease has slowed her movements and weakened her voice. The disease makes everyday tasks like typing at the computer and writing a letter challenging.
“I would have people say this to me when I told them I was diagnosed they’d say oh my grandfather had that. That’s one person’s Parkinson’s. For me, it’s my left side is rigid. I had a frozen shoulder. When I walk without the meds, when the meds are wearing off, it’ll look like I’m limping. I do not have tremors. About 20 percent of us don’t have tremors.”
Since her diagnosis, Penkava has been active in trying to find ways to manage her symptoms, from taking dance classes and swimming, to signing up for a boxing class specifically geared to people with Parkinson’s disease.
“There might be people who think you can just take medicine and think that’s it. But I’m of the view that you have to do a lot of different things… as a friend says, there’s no magic bullet, there’s a magic shotgun. And you do this combination of the meds, the exercise, you watch your diet in a certain way.”
She’s also involved in an innovative, new therapy program that uses tandem bikes to help slow the progression of PD. Physical therapist Jennifer Smart with Village Health and Fitness started the program in Oriental.
“It’s a standard road tandem bike and I put it on a trainer so the back wheel is in a bracket, and the front wheel is on a stabilizer thing, and we have steps to get up to it because it’s hard for the people with Parkinson’s to get on it. So it’s perfectly stationary in the back.”
Marsha Luhrs and Dianne Piland simultaneously sway from side to side pedaling a stationary tandem bike. Luhrs is a volunteer with the therapy program. She’s in the front seat and provides most of the strength to move to the pedals at a consistent 85 rpms.
“Usually, we start slower maybe in the 60’s for a few minutes and maybe cool down in the 60’s at the end for a few minutes, but we try to keep it at that pace.”
“My name is Dianne Piland and I’m not talking too clearly because I have Parkinson’s.”
Piland was diagnosed with disease in 2009. She says riding the tandem bike a couple times a week greatly improves her mobility, even if it’s only temporary.
“Many times, particularly in the afternoon and at the end of my medication cycle, I come in and can hardly walk. And I ride for 45 minutes at 85 rpm and get off the bike and waltz out of here like Cinderella. It usually gives me a couple of good hours at night.”
Beside Luhrs and Piland, there’s another stationary tandem bike. Sarah Goodnight (the captain) rides in front and Kim Spruill (the stoker) is in the back. Spruill was diagnosed with PD in 2010 and has been riding the tandem for about a year.
“I just have more endurance now, more stamina. Even though this makes me very tired, I go home and I’m very tired afterwards, it gives me more energy if that makes sense.”
As a volunteer, Goodnight says she benefits from the program too, getting exercise and making friends.
“It’s a win-win situation. I say fit and best of all, I’m helping people like Kim or any other Parkinson’s patient I’m with.”
The tandem bike program has seven participants with Parkinson’s and about 30 volunteers. It started about two years ago when one of Smart’s friends began showing signs of PD. Wanting to help, she came across a study by Jay Alberts, then a Parkinson’s researcher at Emory University which used tandem bikes to test the effect of forced intense exercise on people with Parkinson’s. He found that a rate of 80 to 90 revolutions per minute triggered an increase in dopamine activity for people with PD.
“Exercise in general has always been good for Parkinson’s, but it’s mainly been neuro adaptive meaning that we as physical therapist are teaching people tricks to do things to get their bodies to move.”
According to Smart, forced intense exercise has neuro-protective effects, meaning it’s improving or delaying the decay of dopamine neurons.
“They know that they’re getting more dopamine activity, they don’t quite know the mechanism of that yet. But they do know that the forced intense exercise is now seen as neuro-protective, so it delays the progression of the disease.”
Exercise Physiologist at Duke Health Sara Edwardson agrees that forced intense exercise is beneficial to people with PD.
“The problem that we see with Parkinson’s is because dopamine levels are low, the messages being sent to the brain for muscle activity and motor control is reduced. So the more intense the exercise, the more messages being sent, so you’re seeing a greater response in muscle activity and motor control.”
For some, the results from a vigorous ride on the tandem bike for 45 minutes to an hour are dramatic. However, Melinda Penkava says it makes her feel more balanced.
“Let me put it this way, when I don’t exercise when I don’t do the biking for a couple of days, I really feel it. I mean I’m walking poorly, the symptoms that I have for Parkinson’s really come through.”
Penkava rides three times a week – at 6 am with her tandem biking partner of two years Regina Dubiel.
“It’s hard to believe (laughter), we’re married on a bike.”
Penkava and Dubiel are the only participants in the tandem bike program to ride mostly outdoors instead of on the stationary trainer.
“I can see in the morning when Melinda and I first get together, I watch her gait when she comes out of the house. And her gait in the morning might be a little bit stiff, maybe not as fluid, but when she gets off the bike she is more free flowing in her stride I mean you can see, and I know you feel an immediate difference just getting off the bike after that ride that those neurotransmitters are there to just make the movements happen naturally.”
Maintaining a pace of 80 to 90 revolutions per minute can be difficult for anyone to keep for 60 minutes, especially people with PD. That’s why Penkava and Dubiel motivate each other to stick with it.
“The two years we’ve been doing this, she has gotten so strong. There are days that she pushes me. So there are times where I’m supposed to be pushing us, I’ll feel her behind pushing, pushing, pushing. Sometimes I think the program is really more for me.”
“And part of the forced exercise is not just when you’re on the bike, it’s having made the commitment, it’s somebody’s made a commitment to be there for you. They made this commitment of their time to take an hour or two out of their day to do that, so man, I’ve got to get myself down there to do it, there’s no not doing it.”
There’s currently no cure for Parkinson’s. There are several drugs that help treat symptoms, but none that slow the underlying neurodegeneration. Until then, exercise programs using tandem bikes is one more way people with Parkinson’s can slow the progression of the disease.