Building hope in the blink of an eye
Shirley Fredlund didn’t recognize her longtime friend Joanie Margaitis, at least not this way.
Sure, it was the same old Joanie from New Milford High all those years ago, when Shirley and Joanie shared stories and giggles and squeals about boys.
“I called her my ‘Ivory Soap’ friend,” Fredlund said. “She had a pure heart. She was just the sweetest, nicest gal.”
But now, in her early 50s, Joanie Margaitis was fading fast. Her limbs were withered and lifeless. She couldn’t move. She could barely breathe.
All of it the collective fallout of amyotrophic lateral sclerosis, a terminal neuromuscular disease. The affliction is best known as Lou Gehrig’s disease, in remembrance of the fallen New York Yankees legend.
“It was pretty rough there at the end,” Fredlund said, speaking barely above a whisper. “All she could do was blink her eyes.”
And then, in the saddest blink of all, Joanie was gone.
Before Fredlund could help her friend, you see, the angels got there first.
It’s been 17 years now since Fredlund founded “Voice for Joanie,” a wonderful program that makes computer-assisted speech available free of charge to local people with ALS.
Thanks to the marriage of a computer, a voice synthesizer and a special infrared switching system, folks with ALS can blink at words and phrases on the screen and communicate with the world.
When Fredlund started the “Voice for Joanie” program, the computer-based system helped ALS patients make phone calls. Now, they can surf the Internet, too.
Most importantly, people with ALS can hold on to their dignity, even when their muscles can’t squeeze anymore.
“They can do anything with a computer that you or I can do,” said Fredlund, whose group has helped more than 550 individuals.
“Right now, we have a man in Newtown who is getting the system (Friday),” she related. “We have another man in Thomaston who is writing a manuscript with it.”
Joanie was supposed to be the first recipient of Fredlund’s hard work. Instead, Joanie gave her name to the project, which brings Eye-Gaze Response Interface Computer Aid (ERICA) to local people with ALS.
On Saturday, Fredlund will hold a benefit pizza party in New Milford to raise money for “Voice For Joanie.”
The event will be held at the Holiday Restaurant in Veterans Plaza from 6 to 10 p.m. Tickets are $20 for adults and $10 for kids. Admission includes pizza, a magic show, music with a disc jockey, and door prizes.
Although Tracy Schach won’t be able to make it, she’ll be there in spirit.
A few days ago, Schach walked through New Milford as part of “Tracy’s Austin to Boston ALS Awareness Walk,” a 2,000-mile journey from her home in Austin, Texas, to Boston.
Schach, the sister of Boston Red Sox pitcher Mike Timlin, watched helplessly as ALS smothered her mother’s life. Less than a year after being diagnosed in May 2001, Sharon Timlin died at the age of 60.
“With my mother, I remember she would occasionally trip and catch the toe of her shoe,” Schach said. “When she picked up her foot, it was actually flopping.”
At first, doctors believed Sharon Timlin had a pinched nerve in her back.
She had a battery of tests — MRIs, CT scans, spinal taps — and everything came back inconclusive.
“I’m sorry,” one surgeon told the family. “There’s not the kind of damage here to have the symptoms you’re having.”
But a family friend, who worked as a physical therapist, didn’t need fancy tests to make his diagnosis. He picked up on Timlin’s condition right away.
“At that time, my mother was walking with a cane,” Schach said. “As soon as she walked through the door, he said she’d either had a stroke or she had ALS. He knew about ALS because his father had it.”
According to the ALS Association, a nonprofit group that promotes ALS research and education, anywhere from 3,000 to 5,000 new cases of ALS are diagnosed each year.
Each time, the diagnosis is a death sentence.
“You have to understand,” Schach urged, “this disease is always fatal. There’s so much that we still don’t know about it.
“When Lou Gehrig first started showing symptoms, he lost friends and family,” she said. “They just scattered like mice because they thought he was contagious.”
Although ALS is not contagious, it remains among the most baffling of mysteries, an affliction without answers.
To be sure, the ERICA system is an important lifeline for ALS patients. But maddeningly, it’s not a cure.
“It always seems like they’re doing (drug) trials,” Fredlund said. “Unfortunately, I have yet to see anything that would truly help anyone prolong their life.”
ALS doesn’t care if you’re black or white, a Democrat or Republican. It doesn’t care if you root for Mike Timlin’s Red Sox or Lou Gehrig’s Yankees.
“Before she died, my mother couldn’t lift her finger off the table,” Schach said. “She couldn’t move her head from side to side.
“This is the same woman who raised four children by herself. There was nothing she couldn’t do,” Schach recalled.”But when you’re living in the 1960s and you’re a single mom, she always believed, ‘We’ll just figure out how to fix it.’”
If only it were that easy with ALS.
Maybe there are no quick fixes here, no sure-fire solutions to end the suffering.
But there will be plenty of pizza to eat Saturday, each bite turning up the volume and turning up the hope on “Voice for Joanie.”
Contact Brian Koonz at email@example.com