Faith has guided Norman Jones his whole life. Even in the face of an uncertain ALS journey, it hasn’t wavered.
Norman Jones described the beginning of his ALS journey as an emotional rollercoaster. He had gone from the highs of retirement and having more time to spend with his family, to the lows of a devastating ALS diagnosis. “But my faith has kept me strong,” Norman shared. “My wife, my kids, my friends, family, and church…they kept me strong.”
Even from a young age, Norman’s grandmother instilled in him the importance of faith. It kept him strong when he moved to the U.S. from Jamaica as a child, and it led him to become a Chaplain in the Army. Norman served in the army for 32 years, 24 of those being as Chaplain, before retiring in 2016.
Two years later, he noticed symptoms such as his left foot dragging while he walked and slurred speech. Through a series of tests and doctor’s appointments, Norman was formally diagnosed with ALS in May 2018.
Today, Norman and Dee, his wife of 41 years, live in San Antonio. They have two daughters—one who lives with them at home and the second who recently got married and is teaching in Korea.
Norman is still involved with his church, teaching a Wednesday Bible study, preaching occasionally, and even sharing weekly email devotions with his congregation. “Even though I have my limitations, I don’t let that stop me from getting involved.”
Dee and Norman connected with the ALS Association after visiting with Dr. Jackson at UT Health in San Antonio. Just two years into their ALS journey, Norman and Dee had to also adjust to the challenges of the COVID-19 pandemic, as In-person clinics and support groups came to a halt for the safety of Texans with ALS and their families.
During this time, virtual support groups kept the Jones family connected with the ALS community. “You’re able to express your emotion and your struggle. And then you get advice from others how they handle their struggles,” Norman shared.
Hearing the stories of other ALS families and swapping notes has been incredibly helpful to Dee as a caregiver. “For me, it’s a lifeline,” Dee shared. She recalled that many times, she has heard experiences from other wives and caregivers that are like her own. “Some of us are going through the same issues and same journey. I try to embrace it.”
Besides the hope of finding a cure, Norman, and Dee hope that researchers will discover ways to detect ALS early and provide treatments to improve quality and length of life with the disease. “I have a lot of hope,” Norman shared.
In the meantime, Norman encourages others on the ALS journey to stay connected to the community around them. “Reach out and connect with family, friends, and organizations, because you get your strength and support from others.”
