Jessy Ybarra: Living His Best Life with ALS

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Jessy Ybarra’s journey with ALS began in 2015, at the age of 51. He was very fit, but noticed increasing fatigue and his left arm wasn’t keeping up with his right arm when lifting weights. Then a relentless twitch in his left triceps led him seeing a neurologist. He was diagnosed with ALS in 2017.

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“I listened as the doctors told me I had ALS. After 18 months of waiting for an answer, that didn’t surprise me," he says. “What did was the sudden shift in my outlook on the future. Bluntly, I didn’t feel I had one. All that time, lost. That’s the thing about an ALS diagnosis; it will take you out mentally and emotionally long before your physical disability does.”

Jessy shared that for the next year, he struggled—grieving the future he thought he no longer had. But eventually, he realized that his future wasn’t lost, only changed. “I could create my new future by planning things a few months at a time—a future I could live INTO,” he said.

While Jessy couldn’t control his ALS, he could take control of his LIFE with ALS, so he created what he calls his ‘aliveness list.’ “I don't believe in the term bucket list,” says Jessy. “Who wants to kick any bucket?” Similar to a bucket list, Jessy made a listing of all the things he wanted to do and all the different places he wanted to go; he just looks at it with a more positive name.

Jessy knew he wanted to make a difference for the ALS community he was now a part of. After reaching out to the local team in San Diego, it was not long before he began working with them in advocacy. “I was part of the advocacy group that eliminated that five month waiting period for social security,” he said. “Helping others is rewarding to me. So at that point, all I can say is have hope.”

Being an advocate has helped me take back my power even as my physical strength has diminished. It has truly transformed my life and my future.”
Jessy Ybarra
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Jessy also has many places he wants to go on his aliveness list. In fact, just last month, he visited Fairbanks, Alaska to witness the aurora borealis, also known as the northern lights, a spectacular, colorful display of light commonly seen in the night sky in the northern hemisphere. Although it was cold, it was an amazing experience he and his family will never forget.

Jessy believes anyone can create a future they can live into. “That's what I do,” he shares. “Every month I create some event that takes me some place, even if it's a weekend getaway or visiting a friend I haven't seen in a long time. The other thing I do is I plan something three months out, something six months out, something a year and a half out. Making plans generates hope, excitement and a future for me to live into!”

“Making a difference and creating memories with my loved ones is how I choose to define my legacy,” says Jessy. “ALS might be taking my strength, but it won’t take my aliveness! I believe there’s a cure out there – just waiting in the wings to be discovered – and we need the funding to find it. Funding today and in the future.”

Special thanks to Jessy Ybarra for allowing us to share his inspiring story and personal journey with ALS. If you want to learn more about how you can help people like Jessy during ALS Awareness Month and beyond, visit our website HERE.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

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