Diagnosed with ALS a year ago, Gleason now walks with a cane, and his speech has been impacted. The new father remains upbeat, however, and has thrown his energy into ALS advocacy work through Team Gleason. (One recent project: bringing two ALS patients to the Super Bowl to fulfill their lifelong dream.)
Tune in below for the full NBC profile, which includes an interview with Steve, 34, and his wife, Michel:
Steve’s story reminded us of two topics covered on our blog last year. During the NBC piece, Michel states that one of her biggest fears is Steve losing ability to speak. This devastating aspect of ALS recently came up in our interview with ALS blogger Rachael, who discussed how important her eye gaze system (which translates eye movements into words) has been since losing her speech. She says, “It allows me to converse on an almost level footing, conveying thoughts and observations, expressing myself in my own style with all its complexities and idiosyncrasies.”
Finally, Steve is another example of an athlete being diagnosed with ALS, just like baseball player Lou Gehrig, who is indelibly associated with the disease. The NBC piece explores the potential connection between impact sports and neurological diseases. Other researchers, such as Dr. Martin Turner, are investigating a possible link between ALS and athleticism in general. Check out our post “ALS and Athleticism: What Have We Learned?” to hear more about Dr. Turner’s research and how PatientsLikeMe data on ALS handedness (i.e. which hand is dominant) has contributed to it.