“Don’t Give Up”: Advice from JJ, a Veteran of Bilateral Upper Limb Loss

While JJ received his bowling attachment in early 2022, he only received his activity-specific for working out in the summer of 2023. “I’ve always been a gym-goer, before my accident I went often. Then when I was starting to recover and learning about prostheses, you know, the myoelectric ones are heavy enough that you have to have some muscle to use them. But I’d been lying in a hospital bed for three months. I needed to rebuild some muscle. I asked my workers' comp for a gym membership, and they gave me one, but there was no one there to help me on the machines. I would use the treadmill for a bit, but then I had revision surgery on my left arm. I went back to the gym, but then I needed another revision surgery. And then, there was this thing called COVID. Anyway, by the time I was ready to go back, my membership had expired.” But the story gets better: “In the summer of 2021, I found a non-profit gym that caters to people with different types of disabilities, strokes or paralysis. It’s been a godsend. They’re called the Neuro Fitness Foundation.” JJ continues, “This past summer, a volunteer came in who used to be a bodybuilder. And he basically became my personal trainer for the summer. I had been working out very hard, but I wasn’t seeing any results. This guy knew exactly how I should tweak my workout — I’d been overworking the muscles and not letting them grow enough. Now I’m seeing results.”

JJ is grateful that there are volunteers at his gym who can offer guidance, and he’s also grateful for the help he’s received in the time since his accident. “My wife has been an absolute angel. She has been by my side the whole time. I also had a friend who came to the house once or twice a week after I got home, and we would just go take walks. Just a walk around the block, but it would get me out and get my strength up and I had company. Before my accident, I had found a good church and I was attending bible study, and they actually came and did bible study with me in the hospital after my accident. And another friend, who is a physical therapist, he would come over and talk to me and see how I was doing. My friends from high school, who don’t live near, they would call and talk with me. So, I had lots of support in the weeks and months following my accident.”

Support also came in the form of Enhancing Skills for Life, which is an organization that helps people with two or more limb amputations. Shawn Johnson, the founder, was a resource for JJ and connected him with other bilateral upper limb patients.  Rob: “I remember being on a call with JJ and two other patients from the Houston area — JJ was expressing his frustrations to these guys. They counseled him to slow down and take things in stride — they told him, ‘The more frustrated you get, the less control you have with your devices.’” Carina, JJ’s occupational therapist, also has thoughts on how Enhancing Skills for Life helped him: “JJ was just learning how to use his devices, and he had a goal of filling a cup with ice water. I’d made a few suggestions, but something just wasn’t clicking for him. When JJ spoke with his peers who had bilateral amputations through the Enhancing Skills for Life organization, they were making suggestions to him regarding how to accomplish that task. That’s when something clicked, and JJ was able to get his ice water himself. People who have lived through that journey have more gravitas to those that are still at the beginning.” JJ: “I was a bit headstrong with Carina, but she had patience with me and definitely helped me.” Below you can see JJ on the left speaking with his fellow amputees.