Mom’s Journey With ASL Motivates Daughter to `Walk to End ALS'

It wasn’t easy for San Diegan Amy Bruce to watch a steady decline in health in her mom Susy, who was living with ALS, or amyotrophic lateral sclerosis, often called Lou Gehrig’s disease. There is no cure, cause or life-prolonging treatments for ALS. Life expectancy for a person with ALS is within two to five years of diagnosis of initial symptoms.

“My mom lasted seven years after her official diagnosis, which was longer that we expected,” said Bruce, who lives in San Diego's University Heights community. “Prior to her diagnosis, we didn’t know anybody in our family with ALS. Both my mom and I were adopted.”

Susy lived in Sacramento at the time. Bruce, who has lived in San Diego since 2004, traveled frequently to Sacramento to accompany her mom to her clinic appointments. “It was a tough journey to watch her slow decline the last few years of her life,” Bruce said. Susy passed away in July 2019. She was 69.

The ALS Association Greater San Diego Chapter recently recognized Bruce and her friends for raising more than $6,000 as one of the top, first-time walk teams at its most recent Walk to Defeat ALS, a fundraising walk held October 2020.

“I was fortunate to receive a lot of support from friends and family and my company matched the donations,” said Bruce, who works as a VP for Aya Healthcare, a healthcare staffing agency “My team name is Strolling for Susy.”

Last year’s Walk to Defeat ALS was held as a virtual event. On event day, roughly 2,000 supporters on hundreds of walk teams chose their own three-mile routes, which included neighborhoods, parks, beaches, mountains and even treadmills. The 2020 ALS Walk generated $300,000 in donations, which was the event’s fundraising goal.

“There were seven of us on my team, including my husband and close friends,” said Bruce. “We started in the morning on Shelter Island and walked along Harbor Drive and finished with a brunch in Little Italy. We held signs and people said `thanks’ and `congratulations’ to us along the way. One of the most emotional moments on our walk happened along India Street in Little Italy.”

Amy said a young girl, visibly distraught, stopped the group and said her father had just been diagnosed with ALS. “She was upset and didn’t know what to do or who to turn to find out about the disease,” said Amy. “We told her about the local San Diego chapter and how willing they are to help.”

Bruce said she is grateful for the recognition from the ALS Association Greater San Diego Chapter and looking forward to continuing her support of future fundraising events.

“It was a proud day for me to participate in the walk,” she said. “I am proud to be able to spread awareness and am so proud of the people who supported me: friends, aunts, cousins, and coworkers. As an only child I’m thankful and extremely grateful for a great support system who will join me in doing whatever we can to eliminate this horrible disease.”

The ALS Association Greater San Diego Chapter recently began registration for its 2021 Walk to Defeat ALS, scheduled for Sunday, Oct. 17, at De Anza Cove in Mission Bay. It will be the nonprofit’s 21st annual fundraising walk. For event details, visit www.alsasd.org.

Bruce said the ALS Association in Sacramento provided tremendous support during her mom’s battle with ALS. One of the strengths of the ALS Association is how well the nation’s 39 local chapters work together to support ALS patients and their families like Susy and Amy, according to Steve Becvar, executive director, ALS Association Greater San Diego Chapter.

“We know that Susy received tremendous care service support from the Greater Sacramento Chapter,” said Becvar. “That support led to Amy’s knowledge and appreciation of what our chapter provides. We’re grateful that Amy took the initiative to start the Strolling for Susy team and honor her mother.”

ALS is a progressive neurodegenerative disease that affects neurons, or nerve cells, in the brain and the spinal cord. The progressive degeneration of the motor neurons in people living with ALS weakens muscles and impacts physical function. Eventually, people with ALS lose the ability to initiate and control muscle movement, which usually leads to total paralysis.