Living well with Parkinson’s disease
June 2, 2013
Parkinson’s and the benefits of exercise
It is generally known that regular exercise is effective in delaying the progression of symptoms in people living with Parkinson's disease. Now, the National Institute of Neurological Disorders and Stroke is preparing to conduct clinical trials in three major cities, including Denver, to learn more about how what types of exercise are most effective.
The 12-month study will enroll 126 participants in Denver, Chicago and Pittsburgh and measure the effects of two aerobic exercise levels — moderate and vigorous — against patients who do not exercise.
After screening, the participants will be randomly assigned to one of three exercise programs: one moderate exercise regimen targeting 60 to 65 percent of their age-adjusted maximum heart rate, a second more vigorous regimen at 80 to 85 percent of maximum heart rate, and a third program for which participants won't exercise for the first six months of the study and then will exercise the last six months at either moderate or vigorous levels.
The national institute also is studying possible bio-markers signifying a hereditary link to Parkinson's as well as deep brain stimulation for people living with movement disorders similar to Parkinson's.
Parkinson's and senior citizens
Between 50,000 and 60,000 new cases of Parkinson's disease are diagnosed each year, according to the National Parkinson's Foundation.
Most cases occur in people older than 60, but some people develop the disease much earlier in life, as was the case with actor Michael J. Fox, who was diagnosed at age 30.
There is no cure for Parkinson's, but the drugs levodopa, carbidopa and other medications can control symptoms for many years. Levodopa coverts to dopamine in the body, which is the neurotransmitter Parkinson's patients lack. Carbidopa helps to ensure levodopa is not converted until it reaches the brain.
When Susan Findell first was diagnosed with Parkinson's disease in 2012, her quick response to her physician was, "Please don't tell me I can't golf because it's bad for my arm. I like it so much."
His answer came as a pleasant surprise.
"No, I want you to play a lot more golf," she recalled the doctor saying.
If one must receive the sobering diagnosis of a disease that is chronic and progressive, the news that one of the best ways to fight back is to play harder offers encouragement to live well.
Findell, who just turned 50, is left handed. She had been noticing that her left arm was becoming increasingly stiff and less useful. And then there was the unmistakeable tremor — her left hand visibly wobbled at the wrist joint. The tremor wasn't affecting her work as a hairdresser; when she gripped a pair of scissors, the tremor disappeared. But she decided to change her life.
With the support of her husband, Lee, Findell reacted by selling her business, TriBeca Hair Studio. Except for cutting the hair of a few good friends, she has retired from the vocation she had practiced since she was a teenager. Now, she follows doctor's orders and plays all the golf she can, thanks to a season pass at Haymaker Golf Course.
"Exercise is my full-time job," she said with a smile.
The reality of Parkinson's
Parkinson's disease is a brain disorder associated with the degeneration of nerve cells that produce dopamine, an essential message sender. Dopamine is a neurotransmitter that helps regulate the body's movement as well as sensations of pleasure. Less dopamine leads to less mobility and less control over body movements, especially those movements that take part without any conscious effort on the part of the person.
The causes of the disease have been linked to genetics and environmental factors.
Parkinson's is not a death sentence in the short term; after being diagnosed with motor symptoms, some people survive for another 30 years or more.
But the prognosis is nonetheless sobering in the long term. When Parkinson's is described as a chronic disease, it means its effects are long lasting, and when the disease is described as progressive, it means its effects will continue to worsen over time.
Gardner Bemis was working with Eva Gibbon, of Hayden Pilates, this week to strengthen muscles that can help ward off the progressive threat of Parkinson's. Laying on his back on a padded bench, Bemis swept his left arm from right to left across his chest in a graceful arc.
Bemis explained that the lack of dopamine in his body can cause muscles to shorten and weaken over time.
Gibbons said that by working to improve the flexibility of the muscles in his rib cage and strengthening his back through regular Pilates, people with Parkinson's can avoid the tendency to bend forward, which can in turn constrict the lungs, making them more susceptible to pneumonia. Pneumonia ultimately claims the lives of some people with Parkinson's.
About one-third of the 1 million people in the United States living with Parkinson's ultimately suffer from dementia. And in 2010, the Centers for Disease Control and Prevention ranked Parkinson's 14th among diseases causing death.
In addition to exercise, physicians prescribe drugs that have succeeded in replacing dopamine in patients. Patients and their doctors sometimes try different combinations of drugs to find what works best for the individual.
According to Pyschology Today, dopamine helps humans recognize rewarding experiences and drives them to seek those rewards. Throughout time, people with Parkinson's may come to display less emotion.
Fortunately for people in Steamboat Springs who are living with Parkinson's, there is a support group that provides a place to share experiences and learn from one another.
Lindarose Berkley, a clinical sociologist, and Pat Bemis, whose husband has Parkinson's, lead the support group.
"We have about 15 people in the group who have been diagnosed," Berkley said. "I know there are many more people out there. I know of one woman whose husband (has Parkinson's) and won't come, but she will."
One of the founders of the support group, stem cell researcher Dr. Ralph Dittman, spoke out at the meeting to deplore what he termed the failure of public health agencies to do more statistical analysis of the incidence of Parkinson's. That research is fundamental to developing more effective strategies to prevent and treat Parkinson's, he said.
Some people with Parkinson's simply may not want to be confronted with the challenges facing those who are further along in the progression of the disease, Berkley theorized. However, in addition to providing people a support group, it allows them to exchange information about their experiences with the prescription drugs they take and the diets they follow to ward off some of the symptoms of the disease.
Parkinson's and outdoor sports
Steamboat Springs is a place where many people define their identity and achieve stature through the outdoor activities they pursue. So a physician's advice to exercise more frequently can be a blessing immediately following a diagnosis of Parkinson's disease. But people with Parkinson's have to be adaptable.
Ben Steiner was diagnosed about six years ago, just before retiring from a long career as a train engineer with Union Pacific Railroad.
"It was a devastating, crippling thing," Steiner said. "I went through depression, but I said right off the bat, 'I'm going to beat this thing and get every kind of unconventional (treatment).'"
At the time of his diagnosis, the benefits of exercise for Parkinson's patients were not fully realized. And although he meets with Gibbon and Bemis twice per week for Pilates, exercising indoors isn't really his nature.
"I'm not one who can go to the gym every day and enjoy it. My idea of exercise is getting out and doing activities," Steiner said.
Steiner enjoyed a trip to Lake Powell earlier this spring and just returned home this week from rowing a whitewater raft down Yampa Canyon on a private trip in Dinosaur National Monument. He was at the oars in the notorious War Springs Rapid at the peak of spring runoff when the raft flipped.
Steiner came through it fine — his only injury was a little ding in his pride. But everyone who ventures down whitewater rivers knows that Parkinson's or not, there are only two kinds of rafters: those who have flipped and those who are going to flip.
Unfazed, Steiner already is planning his next adventure, a cross-country motorcycle trip from Steamboat to Georgia, up to Michigan and home again.
"Believe it or not, riding a motorcycle for me is exercise," Steiner said. "Mostly, I enjoy taking curvy roads."
Does the tremor in his left hand bother him while riding a motorcycle?
"I have a significant tremor, and I am very aware that it's there, but you can power through it," he said.
Longtime Steamboat Springs resident Bill Root reached the difficult decision this spring to give up Alpine skiing. After being diagnosed in 2010, he was noticing Parkinson's was robbing him of his sense of balance. The decision was especially difficult for a man who had taught skiing for decades and whose life revolved in many ways around executing the perfectly carved turn with style and grace.
"It was difficult. I have hung up my skis forever," Root said this month. "I will never do that again. I realized I just wasn't safe."
Root grew up in Omaha, Neb., and became a lifelong skier after moving to Fort Collins in 1948 for his college years. He taught Alpine skiing for 40 years at Loveland Basin, Cooper Mountain and Steamboat Ski Area. Root retired from his career as a ski instructor eight years ago but was skiing on the mountain as recently as this past winter.
Now, Root, 82, and his wife, Ann, have channeled Bill's passion for Alpine skiing into bicycle touring. They returned in May from the Roaring Fork Valley, where they road their bicycles as much as 35 miles per day on paved trails to Woody Creek near Aspen and up the Crystal River from Carbondale. Later in the summer, they will set off on a multiday guided trip along La Petit Trail du Nord, which follows abandoned rail lines outside Montreal.
To compensate for the issues he experiences balancing on a bicycle, Root purchased a step-over bike with wide tires and a low-slung frame that eliminates the need to balance on one foot while stepping over a high crossbar to mount the saddle.
He says that he still is a little shaky getting onto his bicycle, but once the bike gains forward momentum, his confidence returns.
Different ways to move
Motion therapy doesn't have to be as dramatic as playing golf or embarking upon road cycling tours or whitewater rafting.
People living well with Parkinson's seek a range of therapies from traditional physical therapists to yoga and Pilates classes.
And while one might think all people with Parkinson's naturally would seize on exercise, the condition also can rob people of their ambition and cause them to tire easily.
Even Root sometimes goes down for a nap at midday.
"My energy level is what I get upset about," Root said. "I've always had a good work ethic, and I still have an excellent work ethic, but not past 11 a.m. I get very crabby and upset with myself (about that)."
During a recent meeting of the Steamboat Parkinson's support group at a conference room in Yampa Valley Medical Center, people with the disease and their partners took part in a rhythmic dance without ever leaving their chairs. They bent and swooped at the waist, then raised their arms to the ceiling before rolling their shoulders outward and gracefully leaning toward the floor again in a controlled movement. They were following along with a DVD featuring a professional dancer from the famed Mark Morris Dance Co., which has an ongoing partnership with the Brooklyn Parkinson's Group in New York.
During the support group meeting in Steamboat, George Lund spoke out about an aspect of living with Parkinson's that most of the group has come to know as "The Freeze."
Lund, a retired pastor with a prior career as an engineer, said one of the more frustrating aspects of life with Parkinson's is the tendency for his body to lag behind his brain. His brain formulates a plan of action, his impulse is to move, but his muscle response lags, and he freezes, or takes choppy, stuttering steps.
"I have two speeds, full ahead and stop," Lund said. "I go to the closet. I want to turn and walk away, and both feet move at the same time, but that doesn't work. I have to concentrate on turning around to walk in the right direction."
To overcome The Freeze, Lund has worked with a physical therapist to learn to break down movements that come without thinking into a series of smaller movements to avoid the shuffling gait associated with Parkinson's. So in order to turn away from the closet, he thinks, "One, turn your first foot out there. Two, put your heel down first," and so on. Lund is even training himself to listen for the sound of a proper heel-down footstep.
"It's like Army — marching — when you're a PD person, you put your heel down first, like you are marching."
Lund and his wife, Alice, also perform a set of exercises, eight reps each. Together, they lunge forward with their right arms and legs, calling out loudly: one, two, three and so on before switching to their left side.
It may sound like a modest accomplishment, but for an octogenarian working to retain his mobility, doing his exercises properly is an important part of every day.
But his daily engagement with Parkinson's is about more than controlling his body. His speech has been affected, and it makes him reticent in social situations. Often, the disconnect between his thoughts and his body make it difficult to jump into a fast-paced discussion, and he's anxious that something he meant to say will come out differently.
"I always used to enjoy being engaged in group discussions about theology," he said. "But my brain gets tired. Now, I'm afraid to blunder. I worry that I might say something that hurt's someone else's feelings. I might blurt something out and offend somebody, and I tend to hold back."
Lund draws on his career as a man of the cloth to help him come to terms with the changes in his life.
"I think of myself as a child of God," he said. "If God accepts me, I should be able to accept myself." ■