Speech expert: Michael J. Fox show could speak up for Parkinson's patients, families

Jessica Huber Download Photo

WEST LAFAYETTE, Ind. — Little is said about speech and communication issues for Parkinson's disease patients, but a Purdue University expert hopes the new Michael J. Fox TV show will speak up about these topics.

"Communication issues with Parkinson's patients do not get enough attention," says Jessica Huber, an associate professor of speech, language and hearing sciences who studies how the degenerative neurological disease affects speech. "A television show with a star with Parkinson's disease speaking, laughing and acting could better help everyone understand the challenges and ways that people with Parkinson's cope with communicating."

"The Michael J. Fox Show," about a TV anchor with Parkinson's disease returning to work, premiers on Sept. 26 on NBC.

Parkinson's affects 1.5 million people in the United States, and most of those with the disease experience communication problems often related to how loudly or clearly they speak. Even with so many patients reporting speech problems, Huber says, the focus is often on the disease's challenges related to mobility and balance.

In addition to general speech, two other themes Huber hopes to see with the show are humor and non-speech issues such as facial expressions and vocal inflection.

"There are funny things about how communication breaks down in everyday life," Huber says. "People repair it and move on, but the stakes are higher when people are affected with Parkinson's. People are afraid to ask for a clarification or admit they can't understand, so how will this play into the show's storylines? Some Parkinson's patients often lose control of their facial expressions, which are often key to making jokes. They also can struggle with inflection of voice, so again, will these influence this comedy?"

Huber also says that the show is likely to be educational, but it also won't represent the experiences of all people with Parkinson's disease.

"It is a very individual disease that has a diverse spectrum," she says.

Huber hopes the program portrays:

* The role of caregivers who are often in the background. "And if there is one thing that needs to be emphasized, it's that caregivers have to take care of themselves. There is this stigma with care situations that the family member is not doing right unless caring for their loved one constantly."

* Exercise and activity. "Patients need to be active in a space they find safe and comfortable. Movement issues can be mediated through activity so it can be very beneficial. Often people are deterred because they are afraid of falling."

* Accurate information for people who don't have Parkinson's disease. "The numbers with this disease are growing, in part because of better early-diagnosis and a larger aging population. But people can expect they will become more familiar with it."

"The patients I work with often say that Michael J. Fox is very inspirational, and I'm really excited about this show," Huber says. "I want people with Parkinson's and their families to see that the disease is not a death sentence. There are treatment options, and you can live a good life. Life won't be the same, but it is not the end."

Huber, who also is a member of Purdue's Women's Global Health Institute, has invented SpeechVive, a device that cues Parkinson's patients to speak louder and clearer. The device, which rests in the patient's ear, provides a stream of noise similar to the background chatter at a party, cueing the patient to naturally talk louder and clearer. This response is known as the Lombard Effect. Her company, SpeechVive Inc., will launch the device into the market in January 2014. Huber also is working with scientists in the Department of Health and Kinesiology to study treatments aimed at improving gait and balance in people with Parkinson's disease.

Writer: Amy Patterson Neubert, 765-494-9723, apatterson@purdue.edu 

Source: Jessica Huber, 765-494-3796, jhuber@purdue.edu

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