By Jonathan Bassett
For Miriam Boelen, PT, helping people adapt to the challenges presented by Parkinson’s disease isn’t just a clinical specialty-it’s her lifelong calling, and it’s the sole reason she entered the profession.
“I became a physical therapist because my uncle had Parkinson’s disease,” said Boelen, senior staff physical therapist at Glenbrook Hospital in Glenview, IL, and author of Health Professionals’ Guide to Physical Management of Parkinson’s Disease (Human Kinetics). “He had problems with walking and functional tasks, and after helping him, I thought to myself, this is something I can envision doing with my life.”
After PT school and a stint in the military, Boelen joined the staff at Glenbrook in 1990. Back then, research into rehab interventions was scant, and misconceptions abounded. She set out to confront the misinformation and serve as a resource for both her patients and her colleagues in the medical community.
“We still see the occasional patient after a diagnosis [of Parkinson’s disease] who is fully prepared to go home, sit in a chair and stop moving,” Boelen said. “We work every day to change that mindset among patients, caregivers and educators.”
Though many rehabilitation professionals may have limited experience working with this condition, PD is far from a medical footnote. It’s the second most common neurodegenerative disorder, after Alzheimer’s disease. And according to research from the Parkinson’s Disease Foundation, as worldwide life expectancy continues to increase, the number of people with PD over age 50 in the world’s 10 most populous countries is expected to double, from approximately 4.5 million in 2005 to 9 million by 2030.
The motor symptoms of Parkinson’s disease begin in the substantia nigra in the midbrain, responsible for controlling movement. Neurons in this area inexplicably die, causing a progressive, degenerative deficiency of dopamine that presents as hypokinesia (akinisia/bradykinesia), rigidity, resting tremor and postural instability.
Left untreated, secondary impairments such as decreased flexibility, tight joints, restrictive joint motion and loss of strength and endurance can surface. Balance difficulty, gait problems, motor control loss, difficulty in swallowing and respiratory trouble can make life challenging.
According to recent research released by the American Academy of Orthopaedic Surgeons, the body rigidity, tremors and movement problems associated with PD can lead to secondary medical issues such as bone loss if patients become less active. Falls and disease progression can lead to severe disability, cognitive decline, and eventually inpatient institutionalization if the condition is not properly managed.
Similar to other neurodegenerative disorders, the majority of cases have no known cause. However, rehabilitation can maintain and even restore function and mobility. Recent studies suggest that intensive exercise may slow disease progression and reduce symptoms.
Setting the Stage
Early in the treatment protocol, which often begins at initial diagnosis or after a major event that sends patients to their physician, physical therapists are called on to be educators as much as movement specialists.
“A lot of the initial time is spent just putting them at ease,” said Boelen. “Giving them a sense of greater control over their condition, and letting them know this isn’t the end of their active lives, goes a long way toward empowering them.”
Boelen added that a period of depression or hopelessness isn’t uncommon among the newly diagnosed, and it’s important for physical therapists to counteract it with current evidence surrounding beneficial procedures and treatments.
“Attitude has a lot to do with how well patients will manage their condition,” she said. “Reactions vary between individuals-some remain optimistic, especially when they see the results of therapy. Those who aren’t can often be helped to a more hopeful and empowered mindset.”
Boelen maintains a website, www.parkinsonspt.com, to be a comprehensive resource for patients and therapists. Current research initiatives, patient tips and advice, help with locating assistive devices, and references with links to a nationwide directory of professionals who specialize in treating the condition are housed in one location. Recent blog posts have covered treatment options for drop-head syndrome, using music to cue walking stride, and the effects of remaining sedentary.
“The main objective is just to keep people aware that therapy is critical, and there are resources out there that can help,” Boelen said. While treatment options are as varied as the challenges that patients describe, therapists can agree on one constant-early access to a neurologist, physical therapist, speech pathologist and related specialists is critical to forestalling the complications that manifest as PD progresses.
“Ideally, we want to see these patients immediately after diagnosis,” said Heather Cianci, PT, MS, GCS, founding therapist at The Dan Aaron Parkinson’s Rehabilitation Center, a division of Good Shepherd/Penn Partners, Penn Therapy & Fitness at Pennsylvania Hospital in Philadelphia. “If you only see them after a fall or a drastic decline in their condition, you’re always going to be playing catch-up. Early therapy keeps the patient ahead of the curve.”
The Role of Exercise
A substantial evolution in recent decades has seen health care providers moving away from activity modifications and ADL assistance, and toward a goal of overall health and wellness, especially in the early stages of managing the condition.
“Nobody leaves my clinic without doing some type of activity-based therapy,” said Boelen. “People with Parkinson’s don’t get weak because they have Parkinson’s; they get weak because they become sedentary.”
However, while the medical and therapy communities are becoming more aware of the beneficial effects of fitness and exercise with this population, saying “all patients with PD must exercise more” is too simplistic, according to experts.
“You’re dealing with such a wide range of potential functional abilities-each person with his own unique situation and challenges-that designing a one-fits-all approach is problematic,” cautioned Lee Dibble, PT, PhD, assistant professor at the University of Utah. Dr. Dibble’s research has been published widely in peer-reviewed journals, covering topics such as fall risk, sensory cueing, disability prediction and the effects of eccentric resistance exercise.
Still, even though he avoids blanket statements, much of Dr. Dibble’s research centers on the role of activity-based therapies. A recent study examined changes in muscle force production, clinical measures of bradykinesia, and quality of life following 12 weeks of a high intensity eccentric resistance exercise program in persons with mild to moderate PD. Results were published in the Dec. 15, 2009 issue of the journal Parkinsonism & Related Disorders.
In the study, Dr. Dibble and colleagues matched 20 individuals with idiopathic PD into either an experimental or an active control group. The experimental group performed high-intensity quadriceps contractions on an eccentric ergometer three days a week for 12 weeks.
Results demonstrated significant effects for gait speed, timed up and go, and the composite PDQ-39 score, a measure of Parkinson’s-specific quality of life. Muscle force, bradykinesia and QOL were improved to a greater degree in the high-intensity eccentric resistance training group.
“Resistance training can be an important component of the overall treatment plan for a person with Parkinson’s,” said Dr. Dibble, who co-presented “Parkinsonism: Evidence Based Management Across the Continuum of Disability” at the APTA’s Combined Sections Meeting in New Orleans on Feb. 11, alongside Terry Ellis, PT, PhD, NCS, of Boston University, and Gammon Earhart, PT, PhD, of Washington University of St. Louis.
“There is a growing body of research evidence that demonstrates the benefits of exercise in improving walking, strength, balance, flexibility and quality of life in people with PD,” he said. “Ultimately we hope to have evidence that activity-based therapies promote improved neurologic function and perhaps even delay the neurodegeneration that causes the movement deficits.”
The question of “how much exercise” is a common one among the rehabilitation community. The American College of Sports Medicine recommends a minimum of 30 minutes of moderate-intensity exercise on most days of the week, and though Boelen will strive for that goal with her patients who have PD, she’ll often have to scale it down for people who are elderly, frail or otherwise unable to complete that much.
“You need to establish their baseline walking abilities,” said Boelen. “Sometimes people just need some guidance in their walking program to get them moving.” Many people with PD have difficulty turning while walking, so this is a movement that Boelen will stress during ambulation exercises.
“It sounds simple, but when you go through the exercises, ask them directly-how hard is this for you? Is it easy, moderately difficult or hard? It’s surprising how many times they’ll tell you that it’s easy, and they can often do more.”
One complication of PD is the loss of the internal sense of movement amplitude; people with PD often think they’re moving with larger movements than they really are.
Cianci is a certified therapist in LSVT® BIG, a treatment philosophy that grew out of LSVT®LOUD, a program devised by speech-language pathologists to train Parkinson’s patients to speak more loudly and clearly. The LSVT program was begun in the early 1990s and named after one of the first patients to receive the therapy.
With LSVT BIG, developed by Becky Farley, PT, PhD, large, repetitive motions help patients walk with an upright posture and large stride length. Patients are taught to move “big”, encouraging the most expansive range of motion with maximal effort, in an attempt to “reset” their movement size.
“We aim for four times per week,” said Cianci of the LVST program, which also includes a program for patients to continue at home. LVST is now being offered in greater numbers of rehabilitation centers.
Cianci will soon undergo training to become a certified LVST instructor. “This is a valuable approach that compliments the education of PTs working in this practice specialty,” said Cianci.
Bringing it Home
A positive development surrounding the management of people with PD has been a greater awareness among insurers and referral sources that early and continual access to physical therapists and rehab providers is essential in managing the complications that manifest as PD progresses.
But work remains to be done-a survey conducted last year by the Davis Phinney Foundation found that communication about quality of life between people with PD and their treatment providers is lacking. Though 81 percent of respondents said they believed that exercise can slow their disease progression, less than half reported discussing exercise with their physician within six months of diagnosis. Nineteen percent said they never discussed exercise.
“Prevention is easier than rehabilitation,” said Boelen. “But whether it’s prevention or rehabilitation, we can help them realize that there is life after diagnosis.”
Jonathan Bassett is managing editor at ADVANCE and can be reached firstname.lastname@example.org