Carl Ames was told exercise could forestall PD symptoms; he went the distance
By Kyle Porter
Carl Ames pulls up on the Segway handlebars and the vehicle tilts back, then shoots off across the pavement – Ames standing astride in his safety helmet and grinning ear to ear.
After demoing the quick, adaptable moves of the Segway, he gets off, takes a tentative step, then lowers his eyes to concentrate on the next step. He swings out a lanyard with his work badge and keys in one hand, and a foot and a leg follow. His steps continue until a threshold halts his progress, so he leaps a little and clears the doorway.
The effort Ames puts into a short walk is in sharp contrast to the ease and speed of the Segway. He leans into the little vehicle, and it responds to his light touch. Parkinson’s disease has robbed his body of the ability to respond consistently to simple commands – stand, walk, turn, be still.
He was diagnosed four years ago when only 46 years old. Besides the tremors most people associate with Parkinson’s, Ames experiences the loss of movement and the loss of control of movement that are also symptoms of PD.
But thanks to the Segway provided by the his employer, Knight Transportation, he is still able to carry out his duties as operations manager at its Phoenix headquarters.
More surprising by far, however, two years after he was diagnosed Ames completed his first-ever triathlon. He recalls that he had no experience as a swimmer and used a waist-belt flotation device in that first triathlon. He also had to develop endurance and his own technique of walk-running to master the foot race. He borrowed a bike for the third leg of the athletic event, discovering that cycling was the easiest part for him.
By March of the next year, he bought a road bike and started cycling seriously. Since then, the now 50-year-old grandfather has completed three sprint triathlons and several bike tours, including a 50-mile ride with friends to celebrate his birthday earlier this year.
If the Segway allows him freedom of action now for the immediate future such dedicated exercise may be holding back progression of the disease itself. At least, that is the evidence from research carried out in recent years.
Dr. Narayanan Krishnamurthi, assistant professor in the Center for Adaptive Neural Systems at Arizona State University and a researcher at Phoenix’s Muhammad Ali Parkinson’s Center, highlighted the nine-month clinical trial he completed to study the benefits of exercise. PD patients used cross-country ski poles while walking in place for 45 minutes, three times per week. Though still unpublished, Krishnamurthi says he found definite benefits to the effort.
Participants experienced greater range and freedom of movement and felt better, he says. A follow-up 12 weeks after the trial ended showed the benefits were sustained, and despite some initial complaints about how rigorous the exercise seemed, many chose to continue, he says.
For Ames, medication is crucial to maintaining his motor functions, and he follows diet recommendations. In addition, soon after after being diagnosed early in 2008, he joined a gym and started cardiovascular and weight training.
His new passion is celebrated with friends and family – his son Jordan finished the last leg of a cycling trip to San Diego when Carl couldn’t ride any further, and his wife Leisa gathered photos of his athletic endeavors and bound them into a book, “First Cycling Adventures –Our Hero!”
The San Diego ride was the culmination of a cross-country bike ride by family and supporters of Parkinson’s patients. The POPs ride, Pedal Over Parkinson’s, started in St. Augustine, Fla., in April 2011 and ended six weeks later in San Diego at the Pacific Ocean. The inaugural event raised almost $43,000 toward its goal of raising $1 million to fund research on Parkinson’s, a disease that so far has resisted efforts to cure it or even diagnose it early. (See Exercise Challenges Parkinson’s.)
By the time it is diagnosed, the disease usually has destroyed about 70 percent of the chemical neurotransmitter dopamine, produced deep in the brain, in the substantia nigra, according to Dr. Holly Shill, a neurologist and director of Parkinson’s research at Banner Sun Health Institute in Phoenix.
Latin for “black substance,” the substantia nigra is a mass of neurons located in the mid-brain, and the destruction of these cells leads to alterations in the activity of the neural circuits within the basal ganglia that regulate movement. The effects of lost dopamine reveal themselves in many ways.
Bradykinesia, or slowness of movement, is common, as is rigidity and postural instability. Those affected can be “on” and able to move when their medication works, or “off” and nearly immobile when it wears off or fails to work. In contrast, dyskinesias are involuntary, writhing, twisting or pulling motions that occur as side-effects of the synthetic dopamine Parkinson’s patients rely on to move at all.
As for Ames, he says he couldn’t face the challenges of Parkinson’s without the support of his wife Leisa and his whole family. In addition to their son, the Ameses, who have lived in Peoria for 23 years, have four daughters and two grandchildren.
Friend Ed Smith, who has known Ames for almost 10 years, competed with him in that first triathlon after Ames approached him to train together for the event.
“Carl has incredible determination to push himself even when his symptoms make it difficult for him to walk,” Smith says.
Since his diagnosis, he has used acupuncture, massage and electronic muscle stimulation therapies. But he feels the biggest benefits from his regular exercise and newfound passion for cycling.
“My body is in better shape now than before I had Parkinson’s,” says Ames, a fit, muscular, healthy-looking man who appears younger than his 50 years.
Leisa Ames says she worried that he was physically overdoing it with the triathlons and bike touring, and says he had some setbacks after strenuous competitions. But she recognizes his need to be proactive and not give in to Parkinson’s. And Ames’s enthusiasm for cycling keeps him optimistic, she says.
“He’s always been a high-achiever,” she says. “Carl doesn’t want to be told he can’t do something.”
Among his many tricks and techniques to move when his body doesn’t respond, Ames demonstrated a sideways shuffle that he uses at the starting line of a triathlon foot race. After several sliding steps to one side he gains enough momentum to propel himself forward and is able to walk-run the course. His friends and fellow competitors call him “Bolt” because of his bursts of energy when he’s running or cycling.
Tiled and patterned floors help him concentrate on placing his steps forward, one by one. The lanyard-swinging trick allows his eyes, then feet to follow the forward motion. And he actually likes curbs. He manages to walk on the edge and even cross foot over foot, up and down. When his body stops, his face conveys the will he musters to make his leg take another step.
Neurologist Shill says visual cues such as those Ames uses are helpful because they engage the brain to coordinate the motor signals disrupted by Parkinson’s.
Asked about his feelings when he heard the Parkinson’s diagnosis, Ames says, “This kind of stinks,” then shrugs his shoulders. “Doctors told me ‘Parkinson’s is not a death sentence, it’s a life sentence.’”
Still, he wishes a database of patients’ progress and reactions to medications could be maintained by doctors or drug companies and that they maintained contact with patients. However, he has learned that no one has the funding to tackle such a project. But he’s active in support groups through the Muhammad Ali Parkinson’s Center at Phoenix’s Barrow Neurological Institute, and he serves on a board for its fundraising events.