THE GIFT OF SPEECH: With help from a Michigan nonprofit, Lansing man battles disease and still manages to speak
BY PATRICIA ANSTETT
FREE PRESS MEDICAL WRITER

May 27, 2003



Say ahhhh.

One little sound.

CHARITY EVENT
ALS of Michigan will sponsor the 2003 Ulimate Charity Auction and Gala at 6:30 p.m. Saturday at the Ford Motor Co. Conference & Event Center, 1151 Village Road, Dearborn.

Tickets are $150 and can be bought at the door or by calling 800-882-5764. The organization's Web site is www.alsofmi.org.
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ABOUT THE DEVICES
Augmentative speech devices enunciate speech when users click a computer switch or cursor on a word or phrase or when they touch a computer screen. Some tips:


Ask about trying out different models. One manufacturer provides rentals for a month at $60 a week, plus shipping and handling charges.

Medicare regulations require that extra softwear be installed so other people won't use the computer for other purposes. The softwear typically costs $1,000.

Contact ALS groups first to see whether they have a loan closet. Donate items to these groups so others can benefit.
For more information, here's how to reach three manufacturers:


Gus Communications: www.gusinc.com 800-869-8521.

Enkidu Research: www.enkidu.net, 800-297-9570.

Assistive Technology Inc.: www.assistive
tech.com, 800-793-9227.
By Patricia Anstett

To say it clearly, 104 muscles need to cooperate. They start in the stomach and move air and the elements of sound upward to the lungs, neck, jaw, throat, tongue, nose and mouth.

Now add a few other sounds to make words and a sentence.

This task is made especially difficult for the 30,000 Americans -- including 1,000-1,200 in Michigan -- who have Lou Gehrig's disease.

Known also as amyotrophic lateral sclerosis, ALS is a progressive disease of the brain and spinal cord that affects nerves that stimulate muscles to move, swallow, talk and breathe.

Somewhere along the way -- often at the beginning, but almost always as the disease progresses -- people with ALS lose their ability to articulate words, a problem called dysarthria.

Words slur or are uttered slowly or breathlessly. Certain sounds such as "g," "k" and "ng" are difficult to utter. As the day progresses, speech in ALS patients gets worse. People who have the disease become winded and exhausted from projecting their voices.

A new program at ALS of Michigan, a nonprofit Southfield center, helps ALS patients preserve their speech as long as possible and matches them with the right speech augmentative devices. serve people with other neurological problems.

The program was started in January with $35,000 in grants from the Jewish Fund and the Metro Health Foundation. Proceeds from a fund-raiser Saturday will help support the program and other services offered by the organization.

"It's much more efficient to talk by voice than any other system," says Lisa Bardach, speech pathologist at ALS of Michigan. "So we want people to be able to speak as long as they can."

Help from insurers
Medicare and most other insurance plans in the last year have been paying about 80 percent of the cost of speech-generating devices -- items that can range in price from a few hundred dollars to $7,000 or more. With the reimbursement hurdle gone, more people are able to afford the devices, which include amplifiers that cost a few hundred dollars and computer devices that scan word lists and utter words and phrases users select.

The computers have thousands of their own words and phrases, and many allow users to program favorite phrases into them.

Devices and patients
Bardach matches people with ALS to the device that best suits them. She evaluates them, the environment in which they live and their communication needs.

The task took nearly four hours last month with John Willems, 44, of Lansing, who lives with advanced stages of ALS.

Six years ago, Willems started dropping boxes at his job as a freight company truck driver. He was diagnosed with carpal tunnel syndrome, a type of repetitive strain injury. Willems thought it had been triggered by the work he did with his hands. Surgery in 1998 corrected the problem, but by January 1999, Willems' symptoms had returned.

The tingling in his hands had moved up into his arm.

"That's when we got nervous," said Heide Ney, his partner of 10 years.

Nine doctors later, Willems was diagnosed with ALS by a specialist at the Cleveland Clinic. Misdiagnosis is common because ALS is initially similar to other diseases.

The couple went home devastated.

Willems was only 38, much younger than the people in their 50s and 60s who typically develop ALS.

The next day, Ney told Willems he could stay in bed if he wanted.

He told himself that if he stayed in bed, felt sorry for himself and got angry at life, Ney wouldn't want to be around him.

"I said: 'I don't want that. I'm going to try my best.' "

Willems lost the ability to walk six months ago. In January, he moved into a residential hospice program in Lansing. He tries to do as much as he can for himself, though he can't bend over to tie his shoes and needs help with many other tasks.

He gets around in a battery-powered wheelchair. When he parks it, he likes to tilt it back so he has support for his head. His neck muscles are weak.

Willems' right arm is limp and curled. He has some strength in his left hand, but even clicking a computer button is a task. Still, he has a sense of humor and a gift of gab. He arrives talking and leaves talking. He gives long answers to questions, even if it takes a while.

Bardach quickly assessed the situation.

"You like to talk," she says.

Willems answers: "It's a big joke in the family." The comment makes Ney and Willems' cousin, Ned Henry, who is visiting from Atlanta, erupt in loud laughter.

Bardach passes along her first tip: Say no more than three or four words at a time, then pause to take a quick breath.

"Did you notice . . . I'm only using . . . three or four words?" she asks, to make her point.

She suggests he and Ney tell visitors to do the same to keep the pace of a conversation at the level Willems needs. "It's even more important to do this when you're tired," she says to him.

She also tells Willems to focus on the first sound of a word or to spell it aloud or point to a letter to talk.

The amplifier solution
Bardach is sure Willems' soft voice will benefit from a voice amplifier. It's a gizmo with a headphone and cord attached to a stomach pouch that carries the amplifier.

Wearing it, Willems looks like a radio announcer. Talking with it, his voice sounds a bit like John Forsyth from the old "Charlie's Angels" TV show. He likes the comparison. "Are you my angel?," he asks Ney. Then he snorts and the noise blasts around the room, prompting more laughter.

Bardach's small office is filled with half a dozen amplifier choices displayed in wire baskets around her. The differences are hard to quickly discern.

Because Willems no longer can move all his fingers, he is not a candidate for a device attached to a computer. Even clicking a lever with his left thumb is difficult, and there's no way to predict how long he'll have enough thumb strength to move a computer's cursor.

Some devices have attachment rods that can be mounted to a wheelchair and manipulated with a nod of his head.

The devices have names like Gus and Enkidu. They are battery-powered computers powered by switches.

Once the switch is pressed, users can scan thousands of words or phrases in a computer screen. Or they can scroll through alphabet letters to spell individual words or program their own common phrases into a device.

"Hello young ladies," a computer voice says, after Willems scans to the selection. He manipulates the switch. The computer spits out a firm, clear "I'm thirsty."

Willems gets the hang of it. "Dinnertime yet?."

"It's nice to see you."

"Thanks for coming by."

"My butt hurts."

Bardach shows him other phrases for medical instructions. "Wipe my eyes." "Please vent my g-tube."

Others are personal. "I will always love you." "Get into bed."

"All of these devices can be customized to whatever you want," she says.

'He just keeps going'
Willems likes the Gus device, but there are none in the ALS loan closet. So he settles for an amplifier donated to the closet by the family of an ALS patient who died recently and another $7,000 DynaVox computer.

He will use it as long as he can, then return it to the loan closet.

Willems leaves tired but happy.

Three weeks later, he still is eager to talk. He hasn't changed the pace of his speech to talk in short phrases, as Bardach has suggested. "He just keeps going," Ney says.

Willems and Ney are eager to learn how to use the DynaVox computer.

"I feel as though Heide and I have come a long way," he says. "We've always tried to plan ahead and not wait until the last minute like on the speech and the wheelchair.

"You need to get yourself in motion from the very beginning. And your attitude is very important. If you want to do things for yourself, people will want to do more for you.

"Don't think there haven't been bad days," he adds. "There have been. But people will want to be around you if you are in good spirits. And the more knowledge you can learn and let your friends know, it's easier for them to accept it. It's that way for us, too."



Copyright © 2003 Detroit Free Press Inc.