New Canaan Library takes ice bucket challenge to honor employee
Updated 6:22 am, Monday, September 8, 2014
As the ice bucket challenge phenomenon sweeps across the nation, the New Canaan Library joined the movement last Friday -- but with one very special difference.
Several library employees dumped buckets of ice water on each other to honor a longtime employee who was diagnosed with amyotrophic lateral sclerosis, or ALS, and was recently forced to resign because of her condition.
"With all this going through the Internet, we should be doing this for her," said Cathy Townsend, a children's librarian whose idea it was to honor colleague Ann Depuy through the challenge.
Depuy, a book-lover and part-time circulation librarian, stopped working in August after five years on the job mostly because she's lost her ability to speak.
Her condition is not a classic ALS case. The 62-year-old woman suffers from progressive bulbar palsy, which involves the brain stem, "the bulb-shaped region containing lower motor neurons needed for swallowing, speaking, chewing and other functions," according to the National Institute of Neurological Disorders and Stroke.
"Each patient is different," her husband, Warner Depuy, said. "In Ann's case, it attacked the bulbar region of her brain stem and as a result, it has rendered her tongue useless. It has affected her tongue and the muscles around her mouth. So as a result of that, she's lost her ability to speak other than in monosyllables."
ALS, also known as Lou Gehrig's disease, gained national attention in the 1930s when Gehrig, a professional baseball player with the New York Yankees, contracted the disease. ALS is a progressive neurodegenerative condition that affects nerve cells in the brain and the spinal cord. Eventually, motor neurons die so the ability of the brain to control muscle movement is lost and many patients become completely paralyzed.
As the ice bucket challenge has made its way into social media, with a number of celebrities joining the movement, the ALS Association has seen a record amount of donations. As of Aug. 29, it received more than $100 million in donations compared to $2.8 million during the same time period last year, July 29 to Aug. 29, according to the association's website.
Also, as of last Friday, the library had raised its own $500 in donations with the challenge, which the staff will donate to the ALS Association.
Ann Depuy began having speech difficulties in March 2013, but she was only diagnosed with ALS months later by Dr. Neil Shneider, of Columbia University's Eleanor and Lou Gehrig MDA/ALS Multidisciplinary Care Center.
"It took a lot of doctors, a lot of tests, from Norwalk to New Haven, until we were finally referred to Dr. Shneider," Warner Depuy said.
Her family is now learning sign language, but she also uses iPhone and iPad apps, including Proloquo, to help with the communication.
The disease still has not affected her motor skills, but she can no longer drink liquids or eat regular pieces of food.
"She can still eat small amounts, but she cannot drink anything without choking," Warner Depuy said.
His wife recently had a feeding peg surgically implanted, which allows her to supplement her protein and carbohydrate intake. Prior to the surgery, Ann Depuy had lost 20 pounds but has already gained 10 pounds back because of the peg.
"While it was a hard decision to make, we're glad we've done it because without (the peg), she couldn't have survived," Warner Depuy said.
In addition to the tongue muscle atrophy, those with this rare condition often have outbursts of crying or laughing, which is known as emotional lability.
"Because of this disease, it causes her to have waterfalls all of a sudden," Warner Depuy said. "She became much more emotional than she normally would. The body reacts more expressively to those emotions."
Another reason she decided to quit her job was because the disease also makes patients tire easily. One of the things she's most grateful for, however, is that she can still read books. Ann Depuy was getting her master's degree in library science at Southern Connecticut State University.
"She had to give that up, too, because it was just too hard to continue," Warner Depuy said, noting that she might come back depending on her progress.
The former librarian is also walking and practicing yoga just as she used to and is planning to play ice hockey in the winter. She previously owned a cooking business and she's a mother of two children, a 28-year-old daughter and a 21-year-old son.
As for the ice bucket challenge, the Depuys were thankful for the library's gesture.
"They are the best," Ann Depuy said, through her iPhone, about her colleagues.
Warner Depuy said the challenge is "fantastic" because ALS is "an orphan disease."
"About 5,000 people a year come down with it and about 30,000 overall in this country have it," he said. "So it's not something that is like Alzheimer's (disease), where it's much more prevalent and where they're throwing a bunch of money at that one. It's still in the orphan stage."
Shneider, who also is a research scientist, is growing Ann Depuy's stem cells and is working on a complete genome sequence for her as part of a trial for a possible cure, according to Warner Depuy, who's hopeful the doctor will be able to make some progress.
"We're greatly appreciative of that," Warner Depuy said. "Time is of the essence. If you have ALS, you don't have an expansive window. You have to get things done now."
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