SAN ANTONIO – Juan Reyes is a US Air Force veteran who was diagnosed with ALS or Amyotrophic Lateral Sclerosis in 2015.
The disease is known to progressively get worse over time. For some it moves faster than others, affecting one’s physical abilities and ability to communicate.
We’ve shared Juan’s story before on KSAT. After testing out a new drug, he’s set out on a new adventure -- a cross country road trip where he and his high school sweetheart could check off some of their travel bucket list destinations and raise awareness for ALS along the way.
“When you’re first diagnosed, there’s not a lot of information out there,” Meg Reyes, Juan’s wife, explained. “One of the first things that we found out ... We went to a support group and what they stated was, ‘you’re mourning the life that you wanted to have.’”
Juan and Meg always wanted to travel. After hearing that insight, they aimed to not let the disease keep them from living out their dreams. So from one week to another they started researching wheelchair-friendly RVs and bought one in Oklahoma. Their first stop was the Redwood Forest -- something that’s been at the top of their list.
Juan recently started blogging and shared his experience on ‘ShareYourALSStory.com’.
“What I share is very honest and very vulnerable. So it is well received by patients and their families because a lot of the patients lose their voice and are not able to dig into their feelings,” he explained.
Through his online ventures, he’s been able to connect with hundreds of other patients. So he decided to try and meet them in person as they embarked on their journey across the country.
“Let’s meet our bucket list. Let’s go through the things that we’ve always wanted, but also make a purposeful visit. And what we thought, ‘We’ll go visit a patient. We’ll be there two hours’... We were there like five hours with each one. And your heart just grows seeing the connection” Meg said.
During their visits with other ALS patients, Meg typically works with the caregivers to share ways to help their loved ones. While Juan will talk with the patients, sharing stories of their travels in hopes of inspiring them to stay positive and continue fighting.
“As difficult as it is to remain positive, I chose to live my life to the fullest because the alternative is simply unacceptable,” Juan said.