WAKE COUNTY, N.C. — The 10th anniversary of the ice bucket challenge brings back memories of why so many started a new way to spread the word about amyotrophic lateral sclerosis.
Participants dump a bucket of ice-cold water on their heads or have someone do it for them, then post a video on social media and challenge a friend to do the same. It was a way to spread awareness about funding for ALS over social media.
Ten years later stories about advocacy are focusing on the perspectives of more than patients.
Caretakers in North Carolina are sharing how they do everything from learning tube feeding to administering medication to the severity of symptoms they watch their loved ones suffer through, like losing the use of their hands, difficulty chewing, enduring a hard time swallowing food and slowly facing the reality of not being to talk.
Julie Simermeyer and Coleen Tyler know how hard it is to become a caregiver.
“It’s a devastating diagnosis. One for which you will never be prepared. It doesn’t matter how much research you do,” Simermeyer said.
Simermeyer and Tyler learned more than they ever expected as spouses.
“If you're not talking with someone who's lived it, it's just completely different,” Tyler said.
ALS metaphorically, and literally, hits close to home for Simermeyer and Tyler through their shared caretaking experience because they live within walking distance of one another in the community of Carolina Gardens near Fuquay-Varina.
“To find somebody four blocks away was kind of surprising,” Simermeyer said.
They didn’t know a thing ahead of time about spousal caregiving before their husbands’ ALS diagnoses.
“We want people to learn everything that they can as quickly as they can,” Tyler said.
They remember everything.
“[You] never forget the diagnosis, and you never forget the day you lose them,” Simermeyer said.
John Simermeyer was diagnosed with limb-onset ALS in February 2021 and fought valiantly for more than three years before dying in early April of this year.
Simermeyer lost motor skills, such as raising his arms. His dependency was so great it pushed Julie Simermeyer into early retirement to be at his side around the clock.
“It’s your worst nightmare,” Simermeyer said.
Happier times from sports memories Tyler made with her husband Jim “Biggie” Tyler line the walls of her home. It’s how she keeps the past in the present.
“It’s great because all of those memories are there,” Tyler said.
The Kansan-turned-North Carolinian said rooting on Kansas State and other midwestern pro teams, such as the Kansas City Chiefs, with the love of her life were some of the fondest moments they created together before her late husband received a bulbar-onset ALS diagnosis in March 2023, only to die seven months after diagnosis.
“You are just kind of learning as you go,” Tyler said.
UNC Health specialists described bulbar-onset ALS as a more progressive form of the disease.
Tyler was determined to let her actions do the talking by platforming his pain in a way that honors the struggle for caretakers and those being taken care of through advocacy.
“Whatever we can do to get information out there to as many people as possible as quickly as possible, that’s why we are here,” Tyler said.
The ALS Association reports that 68% of surveyed caregivers said they spent more than 30 hours a week providing care.
ALS United reports 53 million people in America provide some level of care to a chronically ill, disabled or aging family member of friend.
Multiple organizations fighting to fund ALS research, advocacy and better policies report the average annual costs of care associated with a person who is diagnosed with ALS to be $250,000 a year.
It’s why the women so strongly advocate for finding loaner equipment programs that allow saving thousands of dollars on necessary medical equipment.
They each said finding support groups to learn how to operate specialized equipment is helpful in the caretaking process. Different outlets can also provide more information on what insurance will and won’t cover.
“Make sure that you get this if you need that. I have extra, and I'm still like that. And I promised I would continue to do that. Yeah, I want to help somebody get through this horrendous disease,” Simermeyer said.
Their community was the endpoint for one advocacy walk but the launch point for a greater mission to participate in walks for ALS and other foundations.
Who knew a simple neighborly introduction by their Carolina Gardens community lifestyle director before a walk for ALS could bloom into such a budding friendship?
“Just having that availability to talk to someone who’s been there is huge,” Tyler said.
Both said pounding the pavement is only one way to raise money and awareness to eradicate the devastating disease.
Dr. Jorge Almodóvar-Suárez is the UNC Health ALS clinical director. He said approaching a care journey with a village mentality is helpful.
“We call this a family disease because it does not just affect the patient, but it also affects the patient’s family. Seeing them develop this friendship and this advocacy post, post disease of their family members is very encouraging,” Almodóvar-Suárez said.
Tyler and Simermeyer see their lives as an opportunity to spread the word about the importance of support for caregivers helping loved ones battle ALS.
“Not only are we as caregivers constantly there to help, but we become medical personnel, and we learn to tube feed and administer medications,” Tyler said. “That's what it's all about. Their quality of life.”