Sunday, March 18, 2007
BY CARRIE MACMILLAN
Copyright 2007 Republican-American
Ask Shirley Fredlund why what she does is important, and she’ll give you a simple task. Sit still for 10 minutes. Don’t move a muscle, not even to scratch an itch. Don’t speak. Don’t smile. Don’t laugh.
Don’t snap your fingers to get the attention of the people all around you, carrying on as if you don’t exist. But you can blink your eyes. That is all a person with advanced amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, can do.
“After a while, it starts to hit home,” said Fredlund of her silent-still exercise. “If a person can’t talk, people ignore them.”
She quotes world-renowned physicist Stephen Hawking, who has ALS: “It’s like being in solitary confinement in your own body.”
Fredlund, a New Milford resident, has made it her mission to speak up for those who can not. It’s hard to imagine a better advocate. Simply put, Shirley Fredlund gets things done.
Packed into her 5-foot frame is the heart of a battlefield nurse and the precision of a court stenographer. If she doesn’t have an answer to a question, she jots it down on a yellow steno pad. She follows through on problems — even those she can’t totally fix.
Because what her clients would really like is their old lives back. She can’t give them that, but she can give them a voice. Fredlund runs a nonprofit organization called Voice for Joanie that loans ALS patients free communication devices, training and around-the-clock technical support.
ALS is a fatal disease that destroys the central nervous system. As many as 30,000 Americans have it at any given time, according to the ALS Association. Half of all people diagnosed live at least three or more years. Ten percent live 10 or more years.
As motor neurons die, muscles weaken and waste away, leading to paralysis and affecting speech, swallowing, chewing and breathing. But the mind usually remains unaffected.
Some people who are robbed of their ability to talk or walk don’t want help. Fredlund gets that. She also accepts that there’s no cure for ALS. But she won’t stand for depriving someone of communication.
A client speaks
The equipment she provides lets users control a computer or voice synthesizer by using a switch or other technology. Through the computer, they can type or speak what they otherwise could not say.
Thomaston’s Paul Szantyr, a former cross-country coach and Kaynor Technical School teacher, was diagnosed with ALS nearly seven years ago. Now, Szantyr, 47, can barely speak and has limited movement in his left thumb. But thanks to technology, he’s close to completing his second book, “How Does a Red Sox Fan Get Lou Gehrig’s Disease?”
Szantyr uses a program called ERICA (eye-gaze response interface computer system). A camera mounted to a computer screen calibrates his eye gaze and memorizes it. Szantyr can then move the cursor with his eye.
“This system has done nothing short of save my life,” said Szantyr via e-mail. “(It) has enabled me to escape the reality of my disease … even if only for as long as I’m on it. It allows me to communicate, the function I miss the most; it allows me to stay connected to the world.
“It came along just when I began to experience real despair. Pushing around my wireless mouse was becoming too big a chore for anything longer than a couple of sentences. I thank God for Shirley’s dedication. It’s rare to find such selflessness in people these days.”
People like Szantyr, who retain their zest for life, encourage Fredlund to keep doing what she’s doing. Visiting his home one day last week, she teased him about how he knew the computer system better than she.
Since ERICA was not working due to sunlight beating down through a skylight in Szantyr’s log-cabin room, she patiently interpreted what he was trying to say, through winks, laughter and blinking. At one point, she held a drink to his lips.
When she started Voice for Joanie in 1990, Fredlund was only looking to help one person: her friend, Joan Margaitis of Morris. Two years after being diagnosed with ALS, Margaitis could only blink her eyes. Fredlund knew her friend was desperate to communicate.
After exhaustive research, Fredlund, then a coordinator for annual giving at New Milford Hospital, found devices that would do just that. At the time, her husband, Frank Ruiz, worked at IBM. The company donated a computer, which was then equipped with an eye switch, voice synthesizer and software.
But Margaitis died days before they could deliver the computer.
Her friend’s unspoken pain and frustration stuck to Fredlund like glue. In the 16 years since, Fredlund has helped 541 others. Most are from Connecticut, but some are from New York, Massachusetts, Texas and other states. Not all clients have ALS. Voice for Joanie will help anyone who cannot communicate, either from a stroke, multiple sclerosis, gunshot wound, or Parkinson’s disease.
The organization consists of Fredlund, Ruiz, volunteers from the Danbury Computer Society, and a handful of others. Voice for Joanie relies completely on donations from the public, corporations and organizations.
Fredlund, who has short, strawberry blond hair and bright blue eyes, spends about half of her time raising money. Donations and funds raised through events are used to purchase equipment, which can range from $450 to $12,000, from manufacturers.
Assistive technology devices aren’t always covered by insurance companies, and even when they are, there is often red tape, Fredlund said.
“With ALS, you never know how long you have, so if you have to spend three to six months getting approval, that’s not good,” she said. “In the future, I think insurance companies will cover it 100 percent, and then we could just be an interim.”
‘She’s never still’
A mother of two and grandmother to three, Fredlund has an easy way with people. One minute, she’s talking about complicated technology. The next, she’s divulging the secret ingredient in her cookie recipe: Crisco. She shrugs off the fat content. She’s religious about morning walks around the neighborhood and Jazzercise.
“She’s never still, I can assure you that,” said Ellen Scallion, Voice for Joanie’s record keeper. “Shirley is energetic and very, very kind. She’s perfect for the job because she can sort of relate to people who are having a problem.”
Still, the job affects Fredlund, Scallion said: “She could cry at the drop of a hat, but when she is dealing with (people with ALS), she gives them a lot of confidence, and it really gets through to people.”
Without advanced technological devices, people who cannot communicate have limited options. Voice for Joanie is working with Bob Veillette, a Naugatuck resident who suffered a major stroke last April and has what is called “locked-in syndrome.”
Similar to an ALS patient, Veillette cannot speak or move. But the longtime managing editor of the Republican-American is fully alert. His family uses an alphabet board to help him spell out words and sentences. He blinks when they reach the letter he needs.
David McClain, a 45-year-old from New Haven, has ALS. With a program called DynaWrite, McClain types on a keyboard and a voice synthesizer translates.
“I have always been a very healthy and active individual,” he said in an e-mail. “Becoming handicapped can become devastating, demoralizing and often make one want to withdraw from society. However, attitude is everything. I struggled with my condition at first, but thanks to people like Shirley and businesses like Voices for Joanie, I have been able to carry on and live and communicate almost as if I’m not handicapped at all.”
That’s exactly what Fredlund likes to hear. “Just leaving someone’s home, knowing you have given them the ability to communicate, that’s the greatest thing,” she said.