When Etzael Jimenez first arrived in the United States from Mexico at the age of 20, his initial plan was to stay for a year to learn English. Now 25 years later, after moving to Mill Valley, he has established a strong community of friends and family.
Etzael worked two jobs at local restaurants and enjoyed living an active lifestyle, hiking in the woods and sharing drinks with friends. However, all of that changed two years ago when he started developing symptoms of ALS in his arms. It wasn’t until the Fall of 2023 that he was finally diagnosed with ALS.
“In the beginning, when I got the news it was a little shocking, so I didn’t have a big reaction. After that, it started sinking in. Realizing the truth of it all, was pretty heartbreaking,” said Etzael about receiving his diagnosis with ALS. “This is especially hard for my mom because I’m her first son. I think she’s the one that is suffering the most.”
In the past year, he has faced challenges with balance, arm mobility, and leg strength. Following his diagnosis, Etzael’s mother, Leticia, traveled from Mexico to the U.S. on a visa and became Etzael’s primary caregiver. Since living with him, she has been his arms and legs, as she describes it.
“I do it with a lot of heart. I don’t say, ‘I’m making a sacrifice’—believe me, no,” said his mother, Leticia. “It is not a sacrifice because, for more than 25 years, I could only give him affection by phone, and now, I give it to him in person.”
Navigating this life-changing experience of being diagnosed with ALS requires a solid support system. Etzael found strength and support among his friends and the ALS Network. Etzael had the courage to seek assistance to learn more about how to deal with ALS. He was connected with an ALS Network professional Care Manager, Sara Holiday, who offers vital information and resources to individuals managing ALS.
“It was through Kaiser where I met Sara. She has been an amazing help for me. I’ve gotten a lot of stuff from the ALS Network, and Sara is still helping me. I told Sara at the clinic that she’s like Santa Claus,” he shared.
The ALS Network provided Etzael access to essential mobility and speech equipment, including a wheelchair, amplifier, head mouse control, and lift recliner, among many other items that facilitate his daily activities.
“In the beginning, it was really hard. I wouldn’t want to go out in public and have people see me like this. But then, I started thinking being at home all day is more depressing. So it’s worth going out,” Etzael said. “Seeing people and asking for help makes it a little easier to live with this.”
Etzael and his mother express the importance of a strong support system. Most recently, he hosted a dinner with about fifteen of his friends in his one-bedroom apartment. He says, “I’m really grateful for all my friends and family. I know a lot of people don’t have that, and everybody should experience friendship like that because it’s rare.”
His advice to the Latino community dealing with ALS: “Don’t be afraid to ask for help. If somebody offers help, whatever it is, take it. I know this is difficult for other people. A lot of people don’t know how to get help. That happened to me. It’s all new, but I feel like sharing my story would encourage others to not be afraid to ask for help.”
We thank Etzael and Leticia for trusting the ALS Network to provide them with the support they need, and for sharing their ALS journey.