Finding Their Voices
HARMARVILLE, Allegheny County — Parkinson's disease is a progressive disorder that targets the nervous system.
It affects a person's motor skills and — at the moment — can't be cured.
“It's actually the second most prevalent disorder,” said Casey Rodak, director of therapy operations at Encompass Health Rehabilitation Hospital, “second to Alzheimer's.”
Parkinson's is more prevalent in New England and the Rust Belt than the rest of the country, according to Rodak. He said of an estimated 1 million Americans with the disease, about 36,000 are Pennsylvanians.
The good news is there's a growing awareness of Parkinson's, partly because it's affected a number of famous people: Muhammad Ali, George H.W. Bush, Neil Diamond and Michael J. Fox, among others.
“There's actually a lot of famous people who have been ambassadors,” Rodak said.
The medical field has taken great steps in recent years toward fighting Parkinson's by preserving people's ability to function. Some of this is done through medication. A lot of it is done through therapies.“That's the hallmark,” Rodak said, “maintaining (a) disease-specific exercise program over time.”Parkinson's begins slowly, but symptoms become more pronounced over time.“Once somebody is diagnosed with Parkinson's, they may still be doing very well at home,” Rodak said.Parkinson's has a reputation in Western society that's largely centered on the development of tremors.“I think that we tend to be more aware of the tremor and the rigidness,” said Valerie Bucek, speech therapy manager at Encompass Health. “(And) it's believed to be a disease of older people.”But there's more to the disease. Impaired posture, a shuffling gait, sensory changes, low vocal volume and an inability to portray emotion are among the things patients might experience.Impaired emotive abilities can be especially difficult to adjust to, according to Bucek.“They refer to it almost as like a mask,” Bucek said.Rodak said therapy treatments help to improve both physical and cognitive abilities. They can even “stave off” symptoms in the long run.“Once they make the diagnosis and start with the treatment, the symptoms do improve,” Rodak said.The development of disease-specific treatment programs has made living with Parkinson's manageable. Encompass Health provides physical therapy to counteract a number of Parkinson's symptoms. Because symptoms differ from case to case, it's important therapy treatments are flexible.“Everybody has a different combination of symptoms,” Bucek said.For example, some patients might focus on joint stability by doing sitting forward flexes. Balance can be improved by patients practicing sitting to standing or standing to stepping.Patients need to be evaluated before therapy begins so they have access to the proper level of care.
Physical therapies aren't the only exercises necessary for keeping Parkinson's at bay. Medical professionals are becoming increasingly aware of the importance of speech therapy, too.“The Parkinson's Voice Project is really revolutionary,” Bucek said. “The (difficulty) in communication is not as well-known.”The Parkinson's Voice Project is a national nonprofit organization that's developed intensive speech therapy and corresponding support for patients. Encompass Health has been using the Parkinson's Voice Project to provide out-patient speech therapy.Patients who successfully improve in clarity and volume in one-on-one classes “graduate” to SPEAK OUT! and The LOUD Crowd. These group speech therapies help with speech maintenance.James, who requested his last name be withheld, has been part of SPEAK OUT! and The LOUD Crowd for over a year. The groups have helped him find his voice after he nearly lost it altogether.“It's kept my voice up,” James said. “(The instructor) counts me as one of her success stories.”James likes SPEAK OUT! and The LOUD Crowd because they tailor exercises to personal needs. While one-on-one speech therapy does provide lots of personal attention, James prefers a group setting.“If you can do it, you do it to the most extent you can,” James said. “Everybody's results are different.”Encompass Health has graduated eight people from individual to group speech therapy. Another two patients should be making the transition in a few weeks.“We've had 100 percent transitions,” Bucek said.The exercises SPEAK OUT! and The LOUD Crowd use are both accessible and applicable. Participants can practice with one another to hear the difference in their voices. They can use that feedback for practicing at home.“Finding the time at home tends to be a problem on certain days,” James said.But because the program includes take-home workbooks, he's able to continue his exercises himself. Having the ability to maintain his speech is important for keeping communication channels open, he said.
Encompass Health also hopes SPEAK OUT! and The LOUD Crowd provide a setting for camaraderie. Support from families and friends is a large part of a patient's ability to adapt.“It helps their relationship with their significant others,” Rodak said. “What's a vital piece is having that person to really advocate.”Rodak and Bucek said it's important for Parkinson's patients and caregivers to learn as much as they can about the disease. Knowledge leads to informed decisions about therapies, care and goals.It also leads to hope.“When people have hope, they go out more,” Rodak said. “They stave off the effects of Parkinson's.”James would recommend group speech therapy for anyone facing a Parkinson's diagnosis. “You're in a group that everybody in there is in the same boat,” he said. “It works for me.”Learn more about services available to Parkinson's patients by calling 412-828-1300 or visiting encompasshealth.com/harmarvillerehab.
