I’ve been living in California since 1979, when I moved to Pasadena as a high schooler. Back then, I played every sport I could for a guy my size, mostly baseball and football. I figured one day I’d grow tall enough to play basketball, too, but I never did. Turns out I inherited my mom’s genes for height and a condition called ALS from my dad, but I wouldn’t discover that until I was 50 years old.
My dream coming out of school was to own a car dealership. I knew I’d have to do everything I could to learn the business, so I started as a service technician in the Star Auto Group’s Chrysler dealership in Glendale. I moved up to become service manager, then eventually jumped straight into the general manager job, managing 35 people. The whole time I kept up sports, playing simultaneously for five different adult baseball teams. I played like I was being paid a million dollars. I just loved it. Then my body started to fail.
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I noticed it one day in 2012 when we took our grandson to an aquatics center in Long Beach. We walked everywhere, and my legs felt really heavy. In a few months I started to fall down. Less than a year later, my doctor diagnosed me with ALS, or Lou Gehrig’s disease, a progressive neurodegenerative disease that affects the nerve cells in the brain and spinal cord. It was familial ALS, the kind that’s passed on through generations, the same condition that claimed my father in 1990.
Athletes will always tell you, “We see the play. We live the play, and then we fulfill the play.” I can’t play baseball anymore, but I play that mental game living with ALS every day. Before I go to bed, I’m thinking about the next day: getting up, walking, getting in the shower, using the restroom, drying myself. I’m doing all of this in my head, playing out my action plan. But I don’t look beyond that 24 hours. If you’re living with ALS, you can’t plan for what’s going to happen next week or next month. You have to think about the things that you need to do to function right now. Then you have to act.
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For me, acting means staying as informed as possible regarding research and trials, and sharing my data online so that others who have just been diagnosed with ALS can find out what’s working for me and what to expect next. I became a member of PatientsLikeMe and one of its advisors. The exchange of experiences and power of community and positivity on the site help me not only plan my day, but appreciate every minute of it.
I’m part of PatientsLikeMe’s latest work, which will combine information about my daily experience living with ALS with new measures that gauge what’s actually happening in my body. They’re going to eventually combine all that data with advanced mathematical techniques to find new signals about my health and disease. It will take time, and I may not directly benefit from that research, but I want to help those diagnosed with ALS and those who are soon-to-be diagnosed. That’s why I connect with others and participate in it.
Acting also means being open to trying different types of medical treatments, modifying my diet, trying acupuncture and taking supplements. I go to acupuncture twice a week, eat a gluten-free diet and take supplements and herbs. A natural approach has helped increase my energy and stamina, enabling me to do more things by myself, such as getting up, rolling around in bed, feeding myself, cutting my food and tying my shoes.
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I may not be able to throw or hit a ball like I used to. But I’m thankful that after years of living with ALS, I can still use my hands. I can still speak. I can still breathe. Many aren’t as lucky.
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My Life With ALS: Taking Action originally appeared on usnews.com
