Local women rally behind friend with ALS
Approximately 6,000 people in the United States are diagnosed with ALS each year, according to The ALS Association. In May 2016, Wilton resident Margot Vaughan was one of those people.
ALS — also known as amyotrophic lateral sclerosis or Lou Gehrig’s disease — is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe.
Vaughan’s 25-year-old daughter, Kirsten, said ALS has had a “significant” impact on her mother’s life.
“ALS weakens your muscles and deteriorates them,” she said.
“She can still walk, but it’s very, very slowly. Talking is getting very difficult and eating solid foods is really difficult.”
Kirsten said her mother is still working for Mastercard — a company she’s been with for more than 20 years.
“She is very well respected there,” said Kirsten. “She works mostly from home now, but it’s definitely been harder for her to maintain that with her loss of communication.”
Although the disease “has not been a good process,” Kirsten said, her mother’s friends have been “amazing.”
“They’ve been helpful in finding solutions for some of the problems that we’ve encountered and supporting my family,” she said.
For example, Kirsten said, some of her mother’s friends have been “coming up with different ways to make food” that’s easier for her mother to eat.
“One even bought a device that purées different foods,” she said.
Kirsten said her mother is “home a lot more now,” but her friends make sure to visit her.
“There’s a core group of women who all live in the area, and we sort of take turns in terms of making sure somebody’s there for her — whether she needs a meal or someone to sit with her,” said Wilton resident Kathy Bieger, who met Vaughan while vacationing in Turks and Caicos 20 years ago.
“We both lived in Wilton and had five-year-old daughters in the same school at the time, but we had no idea each other existed,” Bieger said with a laugh.
“I joined an exercise class one morning on the beach and she was right next to me. We struck up a conversation and that’s when we figured out we both lived around the corner from each other and both had daughters in the same school.”
Since Vaughan’s diagnosis, Bieger said, she spends “a lot of time” with her and tries to visit a couple times a week — ”especially now that her abilities are really failing.”
Vaughan spent most of the summer at her house in Martha’s Vineyard, said Bieger, and her “core group” of friends took turns going up there to visit. They also celebrated her 30th wedding anniversary there this summer.
Bieger said Vaughan’s ALS progression has been “very slow.”
About a year before her ALS diagnosis, Vaughan was told she had multifocal motor neuropathy — a rare yet treatable condition that is often mistaken for ALS.
“We thought it was something else very minor with her hands for a year, but then when things didn’t get better, that’s when we really understood,” said Bieger, “and that’s when she got the official diagnosis.”
Since then, Bieger said, “somebody’s been with her all the time.”
“We try to get her out as much as possible,” she said.
“Now it’s getting a little bit more difficult because she’s no longer mobile, but we try to get her out for dinners and whatever we can do.”
Seven months after Vaughan received her ALS diagnosis, Bieger drove to The ALS Association Connecticut Chapter office in Milford to learn more about the disease and ways in which she can help her longtime friend.
“I knew what ALS was, but I didn’t know how to manage it or what how quickly it would deteriorate, so I went to the ALS office,” said Bieger.
“I wanted to get her any services that she might need — not only then, but in the future — and we found this amazing woman, Stacey, who was able to direct Margot to many of the services that are available for ALS patients.”
Fairfield resident Judy Wolf met Vaughan in 1985 while waiting for a charter flight from New York City to Turks and Caicos.
The two sparked a friendship and Wolf wound up being one of Vaughan’s bridesmaids at her wedding two years later.
“I was with Margot when she got the diagnosis,” said Wolf. “She made an appointment with a special doctor known for his diagnostic abilities in determining ALS.”
Wolf said it was “devastating news, as it was exactly what she feared she would hear.”
However, she said, “Dr. Richard Lewis assured her it was slow-moving and was as hopeful and upbeat as he could be.”
The doctor also gave Vaughan the name of “a very smart and highly-regarded doctor at Mass General,” said Wolf, “who was incredible at getting Margot access to medicines and treatments not readily available in the United States with promising outcomes.”
After the appointment, Wolf said, the two met a small group of friends for a pre-planned girls’ weekend at the Monarch Hotel in Dana Point, Calif.
“Margot shared with everyone the sad news,” said Wolf, “and immediately, everyone was supportive.”
Wolf said Vaughan has been “a wonderful, warm, generous and fun friend” to her for more than 30 years, and she will do “anything and everything” she can “to help her keep up her fighting spirit.”
Wilton resident Connie Fitzgerald met Vaughan 33 years ago while working for American Express and said she’s told her she’s available “for whatever she needs,” but Vaughan “rarely asks for help.”
“I’ve just been a friend — able to run an occasional errand or wait for a workman when she can't be there,” said Fitzgerald.
“My husband and I, and my dogs, have been delighted to be able to spend time and share meals with Margot and her family.”
Fitzgerald and Bieger both said Vaughan has dealt with her diagnosis with “grace” and “courage.”
“She is an inspiration to me and everyone I know,” said Fitzgerald.
“It is a pleasure to spend time with her and I would do anything to help her defeat this insidious disease.”
Redding resident Ilene Tanen has known Vaughan for more than 30 years and said she is an “incredible” and “exceptionally smart” person, as well as a “successful businesswoman” and “caring friend and loving mother.”
“Being Margot, she has not taken this disease lying down,” said Tanen, who is helping make T-shirts for the upcoming Walk to Defeat ALS.
“She has literally gone around the world exploring treatments and gathering information that could help her condition and advance a cure for ALS. She is a fighter and very determined.”
Walk to Defeat ALS
After visiting the ALS office, Bieger decided to form the Miles for Margot team for the this year’s Walk to Defeat ALS in Westport on Saturday, Oct. 14.
“Right now, we have about 40 people,” Bieger told The Bulletin on Tuesday, “and I expect it to really grow to at least 100 thanks to [Vaughan’s] daughter, Caroline, who also works at Mastercard.”
“She’s taken this walk to heart and she’s been getting a lot of her Mastercard people involved,” said Bieger.
The three-mile walk, sponsored by The ALS Association’s Connecticut Chapter, will begin at Sherwood Island State Park at 11 a.m. — an hour after check-in.
Money raised will help support those living with ALS, as well as advance global research and public policy initiatives aimed at finding treatments and a cure for the disease.
As of Wednesday, Oct. 4, Miles for Margot had surpassed its $10,000 goal by $12,615.
Bieger said she hopes Miles for Margot will “help Margot find courage” to continue fighting hard.
Vaughan left for a stem-cell transplant in Korea last month weekend, and Bieger said she wants her to know that “all of us — all of the walkers — are behind her and fighting just as hard.”
Click here to learn more about the Walk to Defeat ALS or donate.
Bieger said anyone who wants to help may contact her at email@example.com.