For Leslie Mincks, life is divided into before and after. She was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig’s disease, in 2014. Yet throughout her years, before and after ALS brought physical challenges and a grim prognosis, Mincks has lived with purpose, love and gratitude.
An Everett native and longtime teacher, Mincks turned 70 Tuesday. This weekend, she was celebrating in Hailey, Idaho, where she now lives with her daughter, Rebecca Fundy. There for the birthday party was Mincks’ big sister and biggest cheerleader.
Madalyn Mincks, 73, is a retired school principal who makes her home in Seattle. Like Leslie, she has warm memories of growing up in Everett. Their father, Dr. Charles Mincks, was Everett’s first pediatrician, according to a Herald article published when he died in 1994.
The sisters remember riding along when their dad drove to house calls as far away as Darrington. Today, Madalyn has a different mission. She is there for her sister when Leslie makes trips every three months to the Virginia Mason Medical Center’s ALS clinic in Seattle.
There, a team of specialists assess Leslie’s breathing, speech, movement and strength — in essence, how the deadly disease is progressing.
Amyotrophic lateral sclerosis is a progressive, neurodegenerative disease affecting nerve cells in the brain and spinal cord. It has no cure. Life expectancy from the time of diagnosis is generally two to five years, although some sufferers live much longer.
For most patients, ALS first weakens the limbs. Leslie’s disease began as onset bulbar palsy, which interferes with speech and swallowing. Bulbar palsy is the first sign of ALS in about 25 percent of sufferers. Most eventually will be stricken with widespread symptoms that severely limit movement.
Leslie can no longer speak clearly. For some foods, she needs a feeding tube. She walks with a cane, and has a condition called foot drop which affects balance.
Before her diagnosis, she loved to hike, ski, bike and swim. Now, she does yoga and meditates. Always passionate about the arts, she describes herself as “a serious fan of the Sun Valley Symphony.”
To interview her, I emailed questions. “She can still use her fingers,” said Madalyn, adding that her sister is already preparing for a day when typing may not be possible. Leslie practices 15 minutes a day with a Tobii hands-free eye-controlled device. “It’s what Stephen Hawking uses,” Madalyn said.
When Madalyn contacted The Herald to share her sister’s story, she wrote that “Leslie is singularly the most inspiring person I know.”
Interviewed by email, Leslie said her loved ones lift her spirits through unending trials.
“My family is most important to me,” she wrote. “They keep me positive and wanting to fight to stay alive and strong. They are supportive, loving, compassionate and always there for me. Each day, I say ‘Thank you.’”
She also credited friends who have participated in annual Walk to Defeat ALS fund-raising events in Seattle, Boise, Idaho, and Vancouver, Washington. “They understand the meaning of true and loyal friendships,” she said.
On Sept. 10, Leslie’s family and friends will join in the Seattle Walk to Defeat ALS, a 2.5-mile trek at Seward Park. In 2015, Leslie cut the ribbon at the walk. Her team in the 2015 event, “Team AL-LES,” raised $15,225. It was the highest amount raised by a team at the Seattle walk, which benefits the work of the ALS Association Evergreen Chapter.
The sisters, both Everett High graduates, worked together at Lincoln Elementary School in the Wenatchee district, Leslie teaching fourth grade and Madalyn as principal. The disease changed some retirement travel plans, but they still hope to visit wonderful destinations together. They are planning bucket-list journeys to New York and to Sedona and the Grand Canyon in Arizona.
A recent trip was a chance to raise awareness of ALS. In early May, they represented the ALS Association Evergreen Chapter at the National ALS Advocacy Day in Washington, D.C. They met U.S. senators and representatives. There, Leslie made a presentation that said more about her spirit than about a devastating disease:
“2014 was the summer when I knew my life would take on new meaning and I would be prepared,” she said. “ALS was not going to define me. I was still Leslie: a mom, grandmother, sister, auntie and friend, who had always been positive and passionate about life and the future.”
Julie Muhlstein: 425-339-3460; jmuhlstein@heraldnet.com.
How to help
The Seattle Walk to Defeat ALS is scheduled for Sept. 10 in Seattle’s Seward Park. Check-in time is 10 a.m., and the 2.5-mile walk starts at 11 a.m.
Donate to team AL-LES, in honor of Everett native Leslie Mincks, at:
http://webwa.alsa.org/goto/MadalynforAL-LES
Learn about the ALS Association Evergreen Chapter at:
http://webwa.alsa.org/site/PageServer?pagename=WA_homepage
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