Georgia’s Team: Grandmother’s hard-fought battle with ALS inspires family’s fundraising push
On Sunday, more than 100 different teams will participate in the Falmouth Road Race to raise money for Compassionate Care ALS, a nonprofit organization that provides direct services for Amyotrophic Lateral Sclerosis (ALS) patients, their families, and caregivers.
Pam Kondylis, a Winchester resident, created “Georgia’s Team” to honor the memory of her mother, Georgia Therios, and to support the group that provided her, she said, with invaluable support during her mother’s illness.
Therios, who many years ago emigrated with her husband from a small town in Greece, spent her life in Winchester living out the “American Dream.”
Kondylis, who described her mother as “dynamic and very loving,” said she was very active in the neighborhood, in her church, in the community, and especially with her grandchildren, Niko, 13, and Georgia, 10.
Georgia, who is named after her grandmother, remembers that her grandmother loved to cook for people.
“She cooked like every second,” she said. According to Kondylis, Therios could whip up dinner for a party of 20 in no time flat. Georgia added, if you told her you were hungry, she would bring you enough food for four people to share.
“Her mission in life was to make sure they ate,” said Kondylis. So it was a shock when Therios, who her daughter described as “a very young 68,” was suddenly diagnosed with ALS over a year ago.
ALS, which is also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Symptoms frequently include muscle weakness, impairment of the use of arms and legs, shortness of breath, and difficulty swallowing or breathing.
The cause of the disease is not understood, there are no effective treatments, and there is no known cure.
“It basically just attacks without warning,” said Kondylis. Kondylis said that since very little is currently known about the disease, the hospitals weren’t well equipped to deal with her mother’s case.
Kondylis, who is an only child, described the difficulty of trying to make appointments for her mother and talk to the doctors and deal with the insurance.
“She was changing daily and needed new things daily and you’re trying to navigate and help,” Kondylis recalled. “And she’s depressed, because physically she’s becoming handicapped, and meanwhile you have the kids, and you’ve got your household and jobs and life goes on as usual. And then you have this incredible thing that you want to help your family member deal with.”
“You’re half the person and you just can’t focus,” she said. Then, in late August, Kondylis said she called Compassionate Care ALS.
According to Kondylis, Ron Hoffman, the founder of Compassionate Care, came right over and sat with her for two hours.
“He just listened to me, all my frustrations and all my problems dealing with this,” she said.
Kondylis described one Friday morning, in particular: “The doctors were telling me, ‘Well we’re going to do this, we’re going to do that, we’re going to help her with the saline solution, and you could either take her home or send her to a rehab facility.’”
Kondylis decided to take her mother home. Therios, however, walking at the beginning of the week, was a paraplegic by Friday.
“I didn’t know who to call that Friday morning,” she remembers. “And it was this guy Ron that I called. And he helped me, he gave me a good name of a hospice and he told me what I needed to get; the crucial things for my day.”
“They just were so incredibly vital when I felt like there was nowhere else to turn,” she added.
Instead of taking over, Hoffman said he tries to lead families through the experience by supporting them “physically, emotionally, and spiritually.”
“We bring all of ourselves to the experience with the family so they have an understanding they’re not walking the journey alone,” said Hoffman.
A big part of that is providing expensive medical equipment that isn’t covered by insurance, such as shower chairs. Kondylis received a gently used wheelchair from Hoffman for her mother. When she was unable to leave her house to get one herself, Hoffman brought it right over.
Another part of Hoffman’s job description is listening. “We really practice listening and bringing all of ourselves to the circumstance for families,” said Hoffman. “To sit across from someone and listen, and really listen without interrupting, that can be really profound.”
For Kondylis, it was often easier to talk to Hoffman about her mother than it was to talk to her friends and family. She said because ALS is a pretty unique experience. She doesn’t have any friends who know what living with ALS is like.
Also, because the symptoms differ from person to person, it is often difficult to describe the disease to people who haven’t seen it, said Kondylis.
Hoffman was great because “he knew what I was dealing with,” said Kondylis. “You can only really talk that way if you’ve been through it.”
Hoffman was a caregiver to a person with ALS, as well, before founding Compassionate Care in 2003.
He now works with four other employees to travel all across New England. According to Kondylis, Hoffman has now helped more than 400 hundred families deal with ALS.
“If we can get to families, we get to families. Even if it’s over the phone,” said Hoffman.
And even though Therios passed away in November, after a relatively short 7-month battle with ALS, Kondylis is still committed to helping Hoffman because of the treatment she experienced last year.
Georgia’s Team, which will be represented in the race by Kondylis’ cousin, Peter Coufos, has currently raised more than $2,000 for Compassionate Care.
Hoffman’s goal for the whole race is to raise more than $200,000. Last year he raised $122,000.
The race, according to Hoffman, means a lot for the organization in terms of funding.
“It allows us to support all of the programs that we do, whether that’s the equipment that we need, or putting on the gatherings that we put on,” he said. “It’s a huge piece of our funding.”
ON THE WEB
To donate to Compassionate Care ALS through Georgia’s Team, go to Falmouth.ccals.org