Joe Schulz was diagnosed with ALS in the fall of 2013. The signs began six months earlier when he lost the ability to grip a softball bat with his left hand. His friend Susie suggested he visit a specialist at the Froedtert Clinic. Joe visited the specialist and was told that there was a 95 percent chance that he and Lou Gehrig had more in common than just the love of baseball.


While Joe hoped he was part of the remaining five percent, it was not to be. But Joe saw his diagnosis from a different vantage point. "I haven't gotten angry or asked, ‘Why me?’" Joe said. "Why anyone? Better me than someone who's a husband and father."


 Joe never expected to retire at 51 years old, but when he did, he decided to take the time and set out on one last adventure. The reason was profound: "I'm trying to squeeze years out of days." He took a solo road trip down parts of Route 66, driving a total of 6,700 miles in three weeks, meeting old friends along the way but also using the opportunity to find some solace in solitude and nature.


Nearing the tail end of his journey, he wrote a message on his truck’s rear window: “My last trip before ALS steals my freedom.” That's when he started experiencing the compassion of the human spirit with people offering their stories of ALS, picking up restaurant tabs, giving him souvenirs as gifts and offering to carry his belongings to and from his truck.


When his trip came to an end, he was happy to be back in the home his dad built, but he knew he would never do something as independent as taking a solo trip again. He realizes that soon he will have to rely on other people to help him with all the things he once did by himself. This is quite a role reversal because, as Susie says, "Joe's the helper who's always been there for every single person in his life. Few people are lucky enough to know someone like him."


Joe's competitive spirit is stronger than ever, but now he fights his battle from the confines of a wheelchair and gets assistance to complete even the simplest tasks that you and I take for granted. ALS is still fatal. There is no cure. No one diagnosed with ALS has survived.

Your donations to ALSA Wisconsin directly help ALS patients and their families who are fighting this disease in Wisconsin. Donate this Giving Tuesday because no one should have to squeeze years out of days and take one last epic trip at only age 51.


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