Parkinson's disease: Can a few simple moves heal her?
Unlike most others with this disease, Shirley Weiler is improving.
DANYLO HAWALESHKA | Jan 22, 2007
Shirley Weiler is one of those sweet, unassuming, almost painfully shy types. She's lived in the same century-and-a-half-old farmhouse, in the village of St. Agatha, Ont., near Waterloo, for 42 years, "and I've never set foot in my neighbour's house." At 62, she's now retired from her last factory job as an upholsterer. "It's always suited me to work in a factory because you could get a machine, or do something, and be by yourself," Weiler says. "I'm that kind of person, you know?" So when she first noticed signs of Parkinson's disease -- a quivering right foot -- in early 2004, Weiler didn't tell everyone right away(in fact, her sister, who lives in Europe, only found out this month). Needless to say, the thought of publicizing what ails her in a national newsmagazine was mortifying. But there is something special about Weiler, and the way she's challenging the illness that, eventually, will almost certainly rob her of her independence. Unlike the vast majority of the 100,000 Canadians who have the disease, Weiler is, for now, actually getting better.
What causes Parkinson's is a mystery, although genetics are obliquely involved, as are environmental factors. There is no cure, but there is a sliver of hope for slowing the disease's neurodegenerative progression, maybe even reversing some of its debilitating symptoms. The secret lies in exercise, but not just any kind(the wrong type may actually do more harm than good). Weiler is one of the lucky few, part of an experimental 12-week rehab program in which she performs selected exercises three times a week, for about an hour each time.
Neurons in a part of the brain called the substantia nigra produce a neurotransmitter called dopamine to control movement. With Parkinson's, these neurons die off. Previous research, however, has identified certain exercises that stimulate the damaged area. By subjecting patients like Weiler to workouts based on that data, researchers think it may prevent further degeneration of the substantia nigra, and stimulate dopamine production, says Quincy Almeida, director of Wilfrid Laurier University's fledgling Movement Disorders Research & Rehabilitation Centre in Waterloo. Almeida, who is overseeing Weiler's trial, calls his targeted exercises a " 'use it, or lose it' approach" to treating the brain, and thinks his strategy someday may be used in tandem with medication.
When Almeida first approached Weiler to take part in a series of interviews with Maclean's, she immediately balked at being the focus of attention. Then her sons convinced her she had to do it. "They saw the big change in me," says Weiler, an avid gardener and knitter who's generally been active all her life. "And so, if this [article] is going to help people with Parkinson's, I had to do it." She's adamant about one thing, though, knowing as she does that the data are only beginning to trickle in. "I don't want anybody saying 'miracle' or 'cure,' but it's helped me," Weiler says of the program. "It's just been amazing."
Canada has no government-sanctioned exercises for Parkinson's disease. There simply isn't the body of scientific evidence out there necessary to categorically declare whether a particular exercise works. We've tended to follow what the international community has done, and left it at that. That changed last September, when Parkinson Society Canada awarded Almeida its new investigator award, along with $90,000. With the funds, Almeida embarked on a two-year series of experiments to assess, with unprecedented scientific rigour, which exercises actually help Parkinson's patients.
Almeida's trials involve about 50 individuals, including Weiler, and are divided between his centre in Waterloo and a YMCA in Oakville, Ont., just west of Toronto. The hope is to roll out a proven program in YMCAs across Canada after the study is concluded. But it's not as though there haven't been previous efforts. In 2003, Parkinson Society Canada published recommended exercises, but they lack the proof of effectiveness Almeida hopes to establish, says Joyce Gordon, the group's CEO. "To have someone look at providing guidelines, some standards that have some science behind them that actually show that they work, would be a huge step forward," Gordon says.
Early one morning, Rose Johnston, 23, a diminutive dynamo in her first year of a master's in kinesiology, puts Weiler and the other patients through their regimen at the rehab centre, located in an old elementary school. "Oh! Doesn't that feel good?" Johnston says. "Love it! Love it!" There are four men and seven women in her class, and all look to be in their 60s. Each is struggling with Parkinson's symptoms of varying degrees of severity, including tremors, balance issues, a shorter than normal gait, stiffness in the limbs and trunk and general slowness in moving.
Weiler is the least affected of the bunch. She remains spry by any measure, her only obvious symptoms a slight quiver in her right foot, and a shaking right hand that worsens when she's nervous, which is often. With everyone sitting on the edge of their chairs, Johnston has the patients cross their legs, with an ankle resting on the knee. She instructs them to push down on their legs with an elbow. "Get it as close to horizontal as possible," she says, smiling encouragement.
For strength, Weiler grabs a pair of elastic exercise bands tied to the legs of her chair, and raises her arms parallel to the floor. On the portable CD player, Martha and the Vandellas belt out the Motown hit Dancing in the Street. After holding the position for several seconds, she lowers her arms, then repeats the move. She shakes out her shoulders before moving on to a set of bicep curls with the same bands. What distinguishes the workouts is the strict monitoring of patient progress. Prior to starting classes, each participant was put through a series of evaluative tests to establish a baseline, including measuring the length of the person's gait and the ability to perform tasks requiring hand-eye coordination. When Weiler's trial wrapped up late last month, the same tests were done again, and the two sets of results will now be compared.
Weiler's known all along that she's made progress. When she started, she was slow and stiff in the mornings. The basement stairs that she used to bound down effortlessly("I was always the kind of person who would run down the steps, putting on a sock, you know? Like, bang, bang, bang, right?")were now a challenge, requiring that she steady herself with a hand against the wall. She often shuffled. Three months later, she's back to almost normal, and goes down the stairs like a teenager. "I can do all this since I got rid of the stiffness in my right side."
In the hard numbers from Weiler's tests, three results stood out. In the Unified Parkinson's Disease Rating Scale, considered the gold standard for assessing the disease, the researcher tests several parameters, including hand movements, posture and balance, and rates each on a scale of zero to four. The lower the total score, the better. At the start of the program, Weiler rated just 13.5 -- not high, but not insignificant either. After the program, in what Almeida considers "probably the most important result," she was down to 7.5, equivalent to what many seniors without Parkinson's score. "Of course, this has to be taken with a grain of salt," Almeida says. "Hopefully she represents the trend for all participants in the study."
Weiler's stride length, as measured by an electronic pad with thousands of sensors, had also improved, increasing by up to six centimetres. And in a third test, in which she had to insert 25 pegs into a grooved board, then remove them all, Weiler's times decreased by as much as 18 seconds. Taken as a whole, Weiler's results are "extremely encouraging," Almeida says. "Many of our staff couldn't identify any symptoms of Parkinson's disease at all [in her]. A lot of countries will be anxiously awaiting the final results of these studies." The others in the class all seem to have improved, too, Weiler says, based on just looking at them. But because of privacy concerns, how they actually fared will have to wait until Almeida's anonymous results are published in a scientific journal.
Almeida isn't about to declare victory, but he may be on the right track. He's certainly made a convert of Weiler. "My life, kind of, has taken a detour with Parkinson's, you know?" Weiler says. "And now that I can come here [to the centre], I feel like Dr. Almeida has put me on the right road again."
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