NORTH ANDOVER — North Andover mother of three Nicole Johnson is no stranger to the world around her changing at a drastic and life-altering pace.
A year after her husband’s death, Johnson is finding her footing with a young family and turning heartbreak into healing for others.
The Eagle-Tribune met Nicole and her husband Charles “Chuck” Johnson on April 11, 2025, to bring awareness to the local family adapting to life with amyotrophic lateral sclerosis (ALS).
The progressive neurodegenerative disease affects nerve cells in the brain and spinal cord, causing muscle weakness that leads to the afflicted person’s inability to move, eat, speak and breathe over time.
Chuck Johnson was diagnosed with ALS on Valentine’s Day in 2024. He lost his battle to the progressive, terminal disease on April 17, 2025, at the age of 39.
“There’s no cure for ALS, there’s nothing so you’re living with that uncertainty and becoming a medical professional in your house,” she said about the rapid progression of her husband’s disease. “I was basically running a little (intensive care unit) ICU.
“We went through a lot of change in a short period of time,” she added. “For me, it’s really important to show what life is like afterwards.”
A year later, Nicole Johnson, 39, gets hit daily with every stage of grief since Chuck’s death while raising three children under 6. She has days where she feels she can handle what’s thrown at her and others where she’s questioning what’s happened.
But keeping Chuck’s memory and legacy alive through simply living life with her children is what she strives to do. Sharing her story on social media has kept her going while continuing to advocate to find a cure for ALS.
She’s returned to work at Biogen in Cambridge, Massachusetts, where her professional life intersects with her personal experience. She hopes the biotechnology company, which is exploring ALS therapies in the pipeline, will utilize her insights.
Johnson is also actively involved in the ALS community where she volunteers with the Pete Frates Foundation and speaks with families on a similar journey.
“It helps my healing and having a purpose brings me closer to Chuck,” Nicole said.
Learning process
Johnson’s children keep her on her toes as she tries to capture their evolving questions about their father as time passes. The three young ones have different memories of him and how they processed his death.
She recalled the adult-like reaction and wailing from her daughter Alana, now 4, who understood what it meant at the hospital last April when she was told her father would not come back home with them. Alana wailed.
There’s now open conversations about death around the house as the kids first experience with death was of their father’s. Her son Charlie has fears of his mother dying.
“It’s trying to reassure him that I’m doing the best to take care of my body and there’s so many people around to take care of them,” Nicole said.
She also understands her 2-year-old daughter Jenna’s grief journey will come later as she was only an infant when her father died and will rely on photos and videos to remember him.
The family never planned too far in advance. Nicole holds onto memories of traveling in Chuck’s modified van together, the kids riding on his wheelchair and hanging out in bed with him.
“It’s even just the memories of Jenna laying on him,” Nicole said.
It was always about “making it work” where Chuck was able to spend quality time with his children. On his last day before his medical emergency, the family was outside in the backyard enjoying a beautiful, sunny afternoon.
In the immediate aftermath of Chuck’s death, Nicole said she felt guilty for not doing enough. She still kicks herself for not videotaping more in the beginning.
For her family, they slowly parted ways with the equipment and objects that became symbolic of Chuck’s ALS and care.
His wheelchair and shower chair were no longer needed. The 121-foot ramp in the backyard was taken down and the family’s modified van all left their home within six weeks of his death.
“‘Can you help us move this stuff down to the garage? It’s going to a new family,’” Nicole recalled asking her kids. She said her children handled the transition well, framing it to them that the objects were going to help another family.
Other things were a learning process.
Chuck is buried in the cemetery across the street from their North Andover home. On a clear winter day, his grave is visible from their front steps.
“It is poetically beautiful,” she said. “He’s not far away, he’s right there and the kids know that’s where daddy is.”
It’s a short walk to visit his grave, but she didn’t know it took six months for a gravestone to be placed. She said the kids had questioned if he was there, not having a physical reminder of him for half a year.
The gravestone now has photos of the “chucklings” and a scene from Ipswich where they would vacation, all imagery comforting to the three children.
“They call it daddy’s special stone,” Nicole said.
New generation
There was joy in another year of change for the young family though.
Nicole has cherished time with her kids and sees her husband in each other from the way Charlie throws a ball to Jenna’s facial expressions. Music played a role in their lives before his ALS diagnosis and continues to do so with concerts lined up to see some of their favorite country musicians.
Their loved one’s memory was honored at three weddings last year and the family has since traveled to Florida.
The kids ask about going back weekly, Nicole said.
“It showed us we can travel with three kids, we can do it,” she said.
Her husband loved boating and wanted his own boat. The family got out on the lake in Ipswich and Lake George last summer.
Her son Charlie showed his father’s excitement about the water.
“He’s going to learn how to drive a boat pretty soon,” Nicole said with a laugh. “Charlie will be the new generation out there.”
She’s learned to find grace this year, for herself, her support system and Chuck’s memory.
Nicole empathized with Chuck wanting to be there for his children, participating in activities with them even though he couldn’t move and had no control over anything.
“He could have stayed in bed all day, but he didn’t,” she said. “We were in the thick of it in terms of active caregiving and planning and parenting logistics.”
Nicole has been able to look back on the early days of Chuck’s diagnosis with more clarity and give herself credit for establishing her support team. As she’s talked with other ALS families, she has realized how lucky she was to have a support network of family members and caregivers.
She’s also found empathy toward family members, recognizing grief will live with them all in different ways.
And with herself, Nicole said she knows her needs evolve every few months. She’s going to Portugal for work and it will be a few days without her kids. It will be a lesson for them, she explained that their mother can leave, come back, work and that mom has a life.
Johnson’s family is still transitioning from having grandparents take shifts sleeping over, but half the time it’s just her and the children.
“We’ll get to the point where it’s just us all the time.”