Faces of ALS: Channeling Mom’s Positivity in the Face of Familial ALS

Emily Cerbone Faces of ALS, Home Page

As a healthcare worker, Tina cared for people diagnosed with ALS, including her mother. Prior to her mom’s passing in 2018, Tina started to experience symptoms that were eerily familiar.

“Towards the end of my mother’s battle with ALS, I began having muscle spasms and fasciculations in my legs – I assumed it was in my head and I was just feeling some of my mom’s symptoms,” she says. After my mom passed, my symptoms subsided, or so I thought.”

In August 2019, she was working as a home health nurse when the muscle spasms returned.

“I chalked my symptoms up to stress and exhaustion,” she says. “However, due to my family history, I underwent some tests and called the neurologist who diagnosed my mother with ALS. My cousin was also having the same symptoms and was eventually given the diagnosis of ALS with a SOD1 gene mutation – this is when I found out my mother’s ALS was a genetic variant.”

After an abnormal EMG and a genetic screening, Tina was diagnosed with ALS in December 2020.

Prior to Tina’s ALS diagnosis her life was her job. She had worked in the medical field since she was 16 years old and had to make the unfortunate decision to retire early.

“I could no longer perform my job duties safely and had to take a medical retirement early in 2022. For the first time in my life, I wasn’t taking care of others and had to learn to take care of myself. I had always been a ball of energy and had a very hard time just sitting back and relaxing. I have learned to listen to my body, to rest, and to relax when needed.”

Tina was introduced to the Foundation at the Lois Insolia ALS Clinic at Northwestern Medicine. She was excited to meet members of the Foundation in person when she won tickets to the Cubs game at Wrigley Field on Lou Gehrig Day in June.

She is grateful for the support that she has received.

“I have received guidance on applying for Social Security and wonderful supportive calls from the Foundation’s Manager of Support Services Cara Gallagher, LCPC.” Tina says, “She always finds the best time to call – those little moments when positivity begins to fade, and I need a recharge.”

Despite the drastic changes to her life because of ALS, many things have remained the same, like her positivity and her fight.

“I still thrive to put a smile on my face every day and my day is not complete until I have made someone else smile,” Tina says. “My mom lived 12 years fighting ALS and she always kept a positive attitude and a smile on her face. For all of us fighting now, there are so many trials and treatments that are showing great promise. I don’t believe there is going to be that one amazing drug that is going to cure us all, but I think there are plenty in the works that will slow this beast down. Just remember to enjoy every moment you get with family and friends and make the most of your time together!”

Please donate to help others like Tina, as well as their friends and family members, create more memorable moments with the ones they love.