Chuck has been married to his wife for 46 years, and has 3 grown sons, 7 grandchildren, and 1 great grandchild. A self-proclaimed cowboy, Chuck has a love of poker and even hosted weekly poker nights with his friends and family before the pandemic hit. He had also been involved with different sports and even has a 2nd degree black belt in American Karate.
Chuck has been an athlete for most of his adult life, so when he started noticing weakness in his legs, he simply thought he was out of shape and needed to get back into training. In January 2013, Chuck visited his primary care doctor who noticed “abnormal weakness” in Chuck’s arms and legs. The doctor sent Chuck for an EMG and nerve conductive study, and the results lead to him suggesting Chuck see a neurologist. After more studies, Chuck was referred to Dr. Daragh Heitzman at Texas Neurology who diagnosed him with ALS in July of 2013.
After being diagnosed, Chuck began visiting Dr. Heitzman’s clinic every 3 months; it was during one of these clinic visits that he was connected with the ALS Association of Texas.
“The biggest contribution for me has been that it provides a connection with other patients and resources,” Chuck said, “I feel like the ALS Association unites patients and their families and caregivers and provides a unity and support that – to me – is really essential to living with ALS on a day to day basis.”
Keeping the Faith
Chuck’s faith helps him keep going through his ALS journey, but it hasn’t always been easy. Chuck’s son was diagnosed with muscular dystrophy, a disease which leads to muscular degeneration.
“I had about 11 years of my life where I was just mad at God because my son who had muscular dystrophy had a daughter, and she was diagnosed with muscular dystrophy too, and I knew what that meant for her and for their family, and I just got angry,” he says about that difficult time in his life. His views changed though when a friend sent him a book after his diagnosis. Chuck explained that in the book, even though God’s servant, Job, faces many hardships and evils, he never loses his faith. “Once I got diagnosed and I read that book, I made a conscious decision that I wanted to use my life with ALS as an example of hope and faith.”
Focusing on the Positives
Chuck keeps a positive attitude about his life with ALS and focuses on the things he can still enjoy even with ALS. Even though he can’t participate in many of the activities he enjoyed before his diagnosis, Chuck says that he has still been able to keep active for most of the 8 years that he has been diagnosed with ALS. Even with the weakness in his arms and legs progressing more in the last few years, Chuck is still glad that he can enjoy different things in his life.
“I try to keep my focus not on the things I cannot do, but my focus is on the things that I can do,” he says, “My physical limitations have continued to increase especially over the last three years, but I can still drive. I use my wheelchair 98% of the time, but if I want to, I can still get out of my wheelchair and walk.
My advice to ALS patients would be focus on the things you can do; don’t focus on the things you can’t do.”
He wants to use his diagnosis as a way to lift others and help them with their own journeys, even as his physical abilities diminish.
“I would encourage other patients – don’t let ALS define you. I would encourage them to be defined by the courage and the hope it takes to live with ALS on a daily basis.”
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