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Big and Loud: Fighting back in the journey through Parkinson's disease
Friday July 12, 2013
Appleton Post Crescent - Nancy Wunderlich fielded at least seven calls from friends that weekend in 2009.
“What’s wrong with Jim?” they said. “He’s not the same Jim as we used to know. He’s so stoic. He does not have facial expressions. He sits in a group of us and he’s staring straight ahead.”
Seeing her husband each day, the changes were so gradual the 76-year-old woman hadn’t taken note; and Jim, now 77, had no idea he was behaving any differently.
A neurologist diagnosed the Greenville man with Parkinson’s disease, a motor system disorder that occurs due to the loss of dopamine-producing brain cells. It usually affects people over the age of 50. As Parkinson’s disease progresses, most people, like Jim, have reduced and short amplitude movements and short, shuffling steps.
On the recommendation of his neurologist, Jim decided instead to go “Big” with the help of a new program St. Elizabeth’s Hospital began offering that same year. Big helps Parkinson’s patient’s learn to emote and move in ways that help block or overcome characteristics that typically come with the disease. The program is offered locally through Affinity Health Systems, ThedaCare and the Neuroscience Group in Neenah.
“We’ll do an initial (two-hour) evaluation,” said Jim’s therapist, Andrea Kriese, doctor of physical therapy based at St. Elizabeth Hospital’s Outpatient Rehabilitation Services. “I do a motor assessment and look at their balance, do some standardized balance tests, some general mobility testing, muscle testing, look at their movement. We’ve not had anybody come in that we’ve had to say you can’t do the program.”
Some patients, like Jim, also have a form of dementia, Kriese said.
An occupational therapy evaluation tested fine motor skills, cognitive testing and handwriting. Based on the tests, the Big program is tweaked to fit individual needs, Kriese said.
“What we do is try to train them ‘Big,’ as part of the normal disease process of Parkinson’s and the lack of dopamine in their brain,” said Vanessa Wowzynski, a physical and certified lymphedema therapist a Riverside Medical Center in Waupaca, which also offers the program. “What we do is we teach the patient to work on being big rather than being normal and agreeing to think big.”
While the Big program uses exaggerated movements to address limb movement, the other portion of the program, known as Loud, helps train patients to monitor and control the volume of their voice.
“The most common symptom of Parkinson’s is having a soft voice,” said speech pathologist Ellen Christiaansen, who does inpatient work at St. Elizabeth’s and outpatient sessions at rehabilitation services. “Their perception of loudness becomes impaired. They think they’re talking a lot louder than they really are.”
The Arizona-based Lee Silverman Voice Treatment Global developed the speech therapy program called LSVT, or Loud, in the late ’80s and then applied those concepts more than three years ago to limb movements, calling it Big.
Christiaansen determines a patient’s existing loudness level or baseline for an “ah,” single words, sentences, paragraphs and conversation.
As part of the treatment, patients also come up with 10 functional phrases or sentences to practice, such as “what’s for dinner” or “how are you” — things they say often.
Parkinson’s patients often feel they are shouting so Christiaansen tapes their voice and plays it back to show them they are not as loud as they think they are. It’s about loudness, not screaming, she added.
“By doing exercise it improves brain function and decreases the progression of the disease,” she said. “They have found by doing this program, besides speech being clearer, voice quality is improved, swallowing is improved and patients report improved memory.”
When patients are taught for an hour on four consecutive days for four weeks — the length of each program — to over-exaggerate movements and speech in their brain, it makes physical movement and speech function closer to normal. Patients are also urged to practice movements and speech exercises at home every day for the rest of their lives.
Often they do the Big program first and then the speech program. I think it depends on the area that bothers patients most. The hope with the intensity of the repetition, Kriese said, is that it becomes an internal cue for patients.
“Parkinson’s was something they thought was a very progressive disease and we didn’t see people until they fell or had really some impact of Parkinson’s,” Kriese said. “We are able to intervene before they have that fall or they are needing a walker. We are able to make brain changes now in Parkinson’s, which they didn’t think we could before.”
And the earlier the treatment the better.
“(Researchers are) seeing signs of neuroplasticity in Parkinson’s now in the basal ganglia, the part that’s being affected,” Kriese said. “They have seen changes with PET scans and positive brain changes that we didn’t think they could do before. So those cells that might be dying or the sick cells are regenerating. ...We’re seeing people maintain gains if they maintain the exercises. Even if you maintain with a progressive disorder, that’s huge.”
But Christiaansen reiterates Parkinson’s patients must continue the speech and movement exercises to stave off the affects of the disease.
“If they don’t continue with their exercises, they regress,” she said. “This is a program they have to do for the rest of their life. But if they continue doing it, data shows patients maintain that level for at least two years.”
Jim, who only participates in Big, has maintained his mobility and has not gotten progressively worse, Nancy said. “I think if he had not done the program he’d be much, much worse. He had trouble with some of the steps at first, but by the time he was through he pretty much knew how to do everything (Kriese) wanted him to. ... It’s a simple program but it keeps those muscles moving.”
“I knew this was important,” Jim said. “By doing these things you’re training your brain to deal with the situation.”
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