‘Walk and Rally’ works to defeat ALS
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NILES -- Being diagnosed with Amyotrophic Lateral Sclerosis may have weakened Leslie Sok's muscle control, but it has strengthened her resolve to carry on and appreciate those who are rallying for her.
"The support makes her want to get up every day," Melanie Cann, a longtime co-worker and friend of Sok's, said.
Sok, 63, of Liberty, received the grim ALS diagnosis in March 2022. Before that, she and Cann had worked more than 24 years together for the Cafaro Co., with Sok serving much of that time as executive assistant to Anthony Cafaro Jr., the business's co-president.
Sok and Cann also joined forces to be among more than 100 people who took part in Sunday's 1-mile Trumbull County Walk & Rally to Defeat ALS that began at the Eastwood Event Centre and proceeded through the Eastwood Mall concourse.
The Cafaro Co. also hosted the one-mile awareness walk.
Many of the walkers were on teams that included "The Dan Clan," "Team ALS Warrior" and "Leslie's ALStars," with the intent to support those with the disease and raise greater awareness of it.
ALS, also known as Lou Gehrig's disease, is a progressive, irreversible and fatal motor neuron disease that causes the brain to stop communicating with the body's muscles. Over time, those with ALS lose muscle control, which typically leads to an inability to walk, speak, eat and breathe, Amber Johnstone, a social worker and care-services manager for the ALS Association, said.
For unknown reasons, veterans are disproportionately more likely to develop the disease, she added.
Cann recalled the day that something was amiss when she noticed Sok's body was acting abnormally. Cann immediately took her friend to a doctor, which was the first of several Sok saw before receiving the official diagnosis, Cann said.
The bond, trust and compassion each has for the other has strengthened, despite the toll the disease has taken on Sok, Cann added.
The same can be said about Thad Weston of Howland and his older brother, Dan Weston, who received an ALS diagnosis about two months ago, and for whom "The Dan Clan" was named.
"We grew up in a musical family," Thad Weston said.
Despite having the disease, Dan Weston, of Howland, continues to play guitar and sing backup vocals in a seven-piece band called Memphis Soul Brew, which specializes in its renditions of classic R&B tunes from the legendary artists such as Aretha Franklin as well as the disco era from about the mid-1970s to the early 1980s. The band performs every other Wednesday evening at Los Gallos Mexican Restaurant in Boardman, said Dan Weston, who also worked 34 years as driver for the United Parcel Service.
Weston, who can walk unassisted but uses a cane for longer distances, added that he performs mild strength training as a way to keep his muscles strong.
"This is just so new for all of us," Weston's wife, Jackie Weston said, adding that "The Dan Clan" consisted of about 20 family members, friends and relatives.
Gabriel Baer, 41, of Niles, who was diagnosed April 1, 2021, said his right side is affected, with virtually no ability to use his right hand to grip objects, along with numbness in his right leg. The progression began with sharp pain, after which his foot began to drop and he had to use a cane before his current power-based wheelchair.
Nevertheless, all of those challenges have neither dimmed Baer's determination to keep forging ahead nor diminished his appreciation for the support he's received. That includes gratitude toward those who worked with him at the Cleveland Clinic, as well as the Mellon Center in Pittsburgh, where he goes about every six months for checkups and bloodwork.
"Any day that you have, take advantage of it. Be positive and fight on," advised Baer, who was the Cafaro Co.'s chief of security and served one year in the U.S. Army before an injury cut his military career short.
Baer also was among the four walkers who made up "Team ALS Warrior."
The local ALS Association offers consultations with family members, educational groups, greater connections with area resources, emotional support and help with navigating the health care system. In addition, the agency provides a Durable Medical Equipment Loan Closet program, Johnstone said.
The program allows registered members to borrow from an inventory of adaptive devices and other such equipment at no cost. In addition, clients can receive limited financial assistance to buy needed assistive equipment, according to the association's website.
Also available are computer-driven, speech-generating devices that can be controlled by a person's eyes, she added.
Johnstone had a piece of practical advice for those who are grappling with a new diagnosis or experiencing difficulty accepting having the disease.
"You're not alone," she said. "There's help out there."
After the walk and rally, all of the teams were honored at Sunday's Mahoning Valley Scrappers game at nearby Eastwood Field.
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