Parkinson’s patients live large in a new program

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Dierdre Cox Baker

quad-city times.com - The ravages of Parkinson’s disease are described as making a person seem smaller.

The individual, probably an older man, grows hunched, speaks softly, and has difficulty walking and doing regular daily activities.

Identified in 1817 by British Dr. James Parkinson, the disorder has been studied for almost two full centuries. However, new therapies have been introduced because it is one of the most common neurological conditions in aging adults.

Parkinson’s is confirmed in about 1 million people each year, and the majority of them are male. The cause has been traced to low levels of the organic chemical dopamine in the brain, but it is not fully understood. There is no cure, and most patients are diagnosed after they turn 50 years old.

All of these realities help explain the excitement of Genesis Medical Center therapists involved in the LSVT outpatient program, which stands for Lee Silverman Voice Treatment. There are voice, occupational and physical therapists involved in the program, originally developed during the 1980s and named after an Arizona woman.

Genesis offers two aspects of LSVT: One is called “Loud” for the voice therapy aspect and one is called “Big” for the physical therapy.

A highly successful program

“With Parkinson’s disease, the people start to get small,” explained Barb Vanderlinden, a speech therapist. She then drew a picture of how the disease affects an individual. “Their speech gets small, they hunch over and look small, and they walk small. Every motion is decreased.”

Physical therapist Pat Glasgow agreed. “Often, as they become smaller and smaller, they still see themselves as normal. And what looks normal to us looks to them as huge,” she said.

The LSVT therapists try to teach — and preach — the concept of living big. They aim for patients to feel that “big” is a new normal level of life.

A month-long series of repeated exercises has paid off with visible success for every patient in the program, the four therapists agreed.

“I’ve never, ever really seen this program not work,” Glasgow said. “That’s exciting to me. We, and patients and their families, see improvements. It ranges from fairly good to dramatic changes in mobility.”

Dr. Ergun Uc, a neurologist, warns that treatments such as LSVT generally require a strong commitment, and compliance, from patients and caregivers and may not suit all who have Parkinson's disease. "For example, those would be the frail patients and those who have dementia," he said. Uc is a specialist in Parkinson's disease at the University of Iowa .He also works at the Veterans Administration Medical Center in Iowa City.

Patient says it works, too

As a young man, Ed Stolley of Bettendorf fought in the Vietnam War and was exposed to Agent Orange, a herbicide used to clear foliage in the jungles of Vietnam and later linked to several health issues in veterans of the Asian war. Stolley, 69, explained that his exposure led to a Parkinson’s disease diagnosis six years ago.

“It affects me quite a bit,” he said. For one thing, family members and friends have noticed that he speaks too softly.

But Stolley’s daughter is a nurse who learned about the LSVT program at Genesis and urged him to get involved.

He found it difficult to complete the therapy exercises, but he’s very thankful that he did. Stolley participated in two types of therapy at the same time, working on both on his voice and his movement. The regimen was complicated by recovery from a ruptured appendix and the mix of prescription medicines that he takes.

“I didn’t think I could make it. It can be a difficult program,” he said.

Improved approach from past

Past therapies for Parkinson’s were to treat patients where there were deficits, said Mickey Owens, an occupational therapist with the LSVT program. “It was kind of like one and done,” she added.

Owens works with patients on their daily activities such as bathing, dressing and living in the home.

The program has specific protocols and exercises, and it’s a lifelong process, said Susan Bode, a physical therapist.

“It’s unique because of the intensity and frequency. Both are modeled to change the movement patterns,” she said.

The therapists agreed that traditional programs ended in less-successful recovery rates. That led to their professional frustration and is why they sought out a programming change.

“We’ve had great success with this,” Bode said.

Stolley, the Parkinson’s patient, agreed.

“I’m glad I stuck it out. It was the best thing I’ve done,” he said, adding, “I would recommend this program to any person with Parkinson’s. I’m that happy about it.”