People freak out when I raise my voice, Ray

Parkinson's Disease: Their Fight to be Understood

People with Parkinson's can have trouble speaking clearly. But simple drills 
can train them to talk louder to regain vocal

Martin Romoff used to rely on his voice to make a living as a Los Angeles 
tire salesman. But two decades of Parkinson's disease muffled his speech and 
spoiled the art of easy conversation. Even his wife, Shirley, asked him to 
repeat himself over and over.

Then he learned about a special kind of voice training. For four one-hour 
sessions over a month, Romoff worked with a speech therapist in a program 
designed specifically to help people with Parkinson's disease retain - or 
reclaim - the clarity of their speech.

Developers of the therapy, called the Lee Silverman Voice Treatment (also 
known as LSVT or LOUD), say that by making a healthy, intensive effort to 
speak more loudly, people with Parkinson's disease can regain control of 
their speaking voices. Although the program is now administered in 30 
countries, the neuromuscular mechanisms behind its effects are still 
unclear. Nor have there been state-of-the-art, double-blind controlled 
studies to test how well it works.

Now researchers are studying LSVT in a small clinical trial that could help 
pinpoint how the program's simple drill profoundly affects the speech 
system.

Parkinson's disease afflicts 500,000 to 1 million Americans, most of whom 
are diagnosed after age 65. The disorder involves the death of brain cells 
that produce the nerve chemical dopamine, which helps carry commands from 
the brain's muscle-control centers.
People with Parkinson's disease move slowly, and their arms and legs may be 
rigid and shaken by tremors. Less well known is that Parkinson's can also 
take away patients' normal voice because it strikes vocal cord muscles as 
well. Speech becomes slurred, and voices soft, hoarse or shaky.

The problem can be tremendously isolating. "One of my patients in New York 
would say to me, 'If I have no voice, I have no life,' " says Lorraine 
Ramig, speech science professor at the University of Colorado at Boulder and 
one of LSVT's developers.

Although up to nine out of 10 of people with Parkinson's disease have speech 
and voice disorders (known collectively as dysarthria), only about 4% 
receive any type of speech therapy. Researchers have tried nonbehavioral 
approaches, such as implanting collagen into vocal cords and stimulating the 
brain with electrodes, but nothing has proved to have lasting success. In 
fact, some older types of brain stimulation have been shown to make 
dysarthria worse, not better, says Bruce Gerratt, professor of head and neck 
surgery at UCLA medical school.
The LSVT program, developed at the Lee Silverman Center for Parkinson's 
Disease in Arizona, uses exercises that focus on a single, simple goal: 
producing a healthy, louder voice through extra effort.

"We tell people, 'Speak louder than you think you need to,' " says Cynthia 
Fox, a researcher at the National Center for Voice and Speech in Denver and 
vice president of the LSVT Foundation.

The focus on volume is "deceptively simple, but you get a lot of bang for 
your buck," says Geralyn Schulz, a speech science professor at George 
Washington University. "Even without a speech therapist telling you to open 
your mouth wider, or take a deeper breath, or move your tongue more, you 
automatically do those things when you speak loud."

That is the opposite of what normally happens with Parkinson's patients, who 
generally make short and small movements: Handwriting gets tiny, walking 
strides get shorter, and speech suffers from a lack of bigness .

Also crucial, Ramig believes, is concentrating on a single aspect of speech. 
This keep-it-simple approach is especially relevant for Parkinson's 
patients, who often have memory and learning problems.

To explore whether volume is the key, or if other simple goals can also 
work, Ramig and colleagues are conducting a clinical trial in Denver. 
Healthy volunteers and Parkinson's patients will undergo either LSVT 
training or a program that targets articulation instead. Researchers hope to 
enroll a total of 80 patients; results are expected next year.

Scientists also need to get a better sense of how well LSVT works. Although 
small studies have shown promising results, larger-scale multicenter 
clinical trials of the therapy are lacking, Ramig says. It's also not clear 
what affects an individual's success with the program, including factors 
such as the patient's age, time since diagnosis, cognitive abilities and 
stage of disease.
Nor do therapists know how long the effects will last.

After Martin Romoff completed the LSVT program about three years ago, he and 
his wife noticed that his voice was stronger. "Speaking was easier, and 
people understood me better," Romoff says.

The positive effects lasted for a while, he says, but his voice has since 
slipped back into old patterns.

To help Romoff and others like him, Ramig and her colleagues are 
experimenting with Web cams, software programs and other technology to help 
patients continue their practice.

Parkinson's: A focus on big movements

Parkinson's patients can learn to "speak loud," but can they also learn to 
"move big"?

Researchers are experimenting with training patients to take big steps, make 
large gestures and generally exert a grand effort in all movements. The goal 
is to combat the characteristic slowness of Parkinson's disease - known as 
bradykinesia - by encouraging them to crank up the drive to their muscles, 
says Becky Farley, a physiology professor at the University of Arizona and a 
developer of the program. As with the Lee Silverman Voice Treatment for 
voice control, patients focus on a single goal: bigness.

In a study of 29 Parkinson's patients and healthy volunteers, the new 
therapy program improved some facets of patients' movements. Their strides 
were longer and their torso rotated more freely, both immediately after 
therapy and three months later. And they could remember to take bigger steps 
even when their attention was diverted elsewhere, such as having to recite 
the days of the week backward.
Early-stage patients saw better results than those with more advanced 
Parkinson's, especially in walking speed.

By Regina Nuzzo
Los Angeles Times - Health Section
December 25, 2006

Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation
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