Big, Loud & Changing Lives: The latest for locals with Parkinson’s

REGION – Michael J. Fox and Muhammad Ali are two famous people battling Parkinson's disease. However, throughout the United States, there are more than 1 million lesser known people affected by the chronic brain disorder, including Belinda Garvon and Dan Schmalenberg, both of Traverse City. While there's currently no cure for the disease, there is big news about a treatment that recently made its way to our area.

In early October, 75 medical professionals from across the country gathered at the Great Wolf Lodge to become certified in the Lee Silverman Voice Treatment (LSVT) BIG program. The intense physical therapy, named after a woman diagnosed with the disease, was developed by several doctors nationwide in 2007. It uses large, exaggerated body movements to help improve major motor skills such as walking and balance among patients with Parkinson's disease and other neurological disorders like multiple sclerosis.

"The goal for patients is that they are able to use the new BIG strategies in everyday life," explains co-founder Dr. Cynthia Fox. "This will help keep patients active and engaged, and thereby maintain a high quality of life."

The two-day certification conference is usually held in large cities like Boston and Chicago. So how did it make its way to Traverse City? The answer lies in a dedicated and determined woman named Maxine Meach. The Traverse City resident had been married for 30 years when she lost her husband, Charles, to Parkinson's disease. When he was diagnosed, Meach says, "I made it my business to become informed about the disease." She and Charles also began the Grand Traverse Area Parkinson's Support Group, which she is still active in today. Despite her husband's passing in 1992, "there was just a strong need for me to stay on," she says. Along with offering support, the nonprofit organization also stresses the importance of being educated about the disease and the latest treatments. When Meach heard about BIG, she did a lot of research and saw "marvelous results." She knew she had to bring it to Traverse City.

"I had to convince the people in Arizona [LSVT headquarters] that Traverse City was a good place to train people for this program," recalls Meach. "They told me I had to have at least 40 people register for the event. Needless to say, we got that 40 — plus some."

Ann Parker is one of three physical therapists at the Grand Traverse Pavilions who got certified in LSVT BIG in October. She has already worked with several patients using the therapy and has seen impressive results. "I'm so excited and energized on how this can help people. I have seen them take big steps and regain some their balance and confidence." The hour-long sessions are done four days a week for one month, with follow up visits. With many repetitions of core movements, the therapy is physically demanding, yet Parker says the results are worth it.

Dan Schmalenberg agrees. The 65-year-old was diagnosed with Parkinson's disease last year after his family noticed him slowing down and his speech getting softer. Earlier this year he participated in BIG, and says it was very beneficial. "If my wife starts to see me shuffle, she hollers 'BIG!' That reminds me to do what I learned in therapy- take big and exaggerated steps."

Along with having three therapists trained in BIG, the Pavilions also has a speech language pathologist certified in LSVT LOUD-a therapy that improves vocal loudness by stimulating the muscles of the larynx. Katie Ackerman, who was certified in May, says the therapy may be challenging, but admits her greatest challenge is educating the public. "I don't think a lot of people know about LOUD and the great results it can have."

Meach adds, "I have seen people with the disease give up being social because their voice was no more than a whisper. LOUD can help restore their volume and confidence."

Munson Medical Center is also on board with LSVT LOUD. Speech language pathologist Erin Truog has been treating patients with the program since 2005 and has seen positive results, including in 65-year-old Belinda Garvon who was diagnosed four years ago. "My handwriting had gotten very small and sloppy. When I went to see my doctor he asked, 'What neurologist do you want to see?'" At first Garvon thought her husband was losing his hearing when he couldn't hear her, but when tested by Truog, she says her vocal volume was 20 decibels lower than what is normal. Garvon says LOUD has helped her regain some volume back and strongly recommends the program.

Despite LOUD being around for more than 20 years, Truog and Ackerman are just a handful of medical professionals in the Traverse City area certified in it, something Meach says needs to change. "We are managing, but would like to see more people certified here. Parkinson's disease doesn't only hit big cities." BN