If you’re a baseball fan and are going to watch a game today, you probably know that Lou Gehrig died on June 2, 1941 from Amyotrophic Lateral Sclerosis (ALS). ALS and Multiple Sclerosis (MS) are often packaged together and referred to by their acronyms because of the insidious nature of the diseases. ALS is known as Lou Gehrig’s disease and MLB has chosen June 2nd as the day to honor Gehrig for his courage and his amazing career. MLB and individual teams and players have done a marvelous job of raising money and awareness

I’m linking to a beautiful story about a young woman, Sarah Langs, a stats/research maven who is beloved by baseball. Her best friend, Mandy Bell, an MLB beat reporter has shared their personal journey. I thought I would share some context/background of how ALS impacted my family’s life and what’s changed in the past 25 years. I’ve shared some of this story so please bear with me or skip to the linked story.

Before Sammy Sosa began his crazy home run spree in June of 1998, things changed in our family. When someone is diagnosed with any of the neuromuscular diseases, they’ve already gone through a battery of tests to eliminate the more obvious culprits. But once the diagnosis is made, everyone looks back to dates and telltale signs which in hindsight seem obvious.

Dates and events are etched in my mind from that 11-month period of time. That I can tie much of this to the 1998 baseball season is also relevant. In April, Dad was starting to have trouble talking and eating, and he began some testing. In early May, my Uncle Ed passed away and Dad had a very difficult time at the wake and funeral (his brother-in-law). A few days later, we celebrated my folks anniversary at our last game together in Milwaukee. It was a great game that I’ll never forget and at the time, the postgame dinner, Sr. and I didn’t realize the meal was equally important in the upcoming journal.

After going through a battery of usual tests, Mom and Dad went to Mayo with cousin Lois who facilitated the trip and on May 28th, he was finally diagnosed with Bulbar ALS, which affects swallowing, eating and breathing (predominantly). Coincidentally or not, before we got word, I was approached by someone looking for a donation for ALS. I received a Lou Gehrig baseball card. Dad happened to be a great fan of the 30’s-50’s Yankees-especially Joe Dimaggio. Making the small donation and getting the card didn’t make the news any better.

Twenty five years ago, doctors and researchers didn’t know as much as they do today about ALS and efforts were more at the local level. We were lucky to get involved with the local group, Les Turner ALS foundation. Not only did they provide us with needed support, they shared information. The technology back then wasn’t great and finding equipment that would make Dad more comfortable wasn’t as easy as clicking a button or summoning Amazon. First or foremost, we learned it is a progressive disease and 100% fatal, and we didn’t know when Dad wouldn’t be able to speak any longer. He never stopped communicating though and anyone who spent time with him realizes that. However, for many people the disease isolated the individual and his support group because some people are intimidated by the lack of speech.

Technology has improved to the point where someone’s inability to speak, isn’t really an impediment to communicating. Dad was more of a writer so I don’t think he would have ever texted or emailed.

Everyone who I’ve ever known that suffered from ALS or MS has been an example in courage. Professional athletes and performers are able to shine a light on the diseases, and raise awareness. At the time, ALS was not a favored cause of MLB, in fact, the league hadn’t really championed cancer charities either.

The only local player on either side of town that was involved with ALS was Cub second baseman, Mickey Morandini. Friend Tim and I attended a charity event at a joint in the city, but it wasn’t a big deal. George Brett got involved because a friend of his in K.C had the disease. Now we have national bucket challenges, fist bumps and nights at the ballparks.

Here’s Sarah and Mandy’s story. I’m pretty sure you’ll start rooting for Sarah even if you aren’t passionate about the game.

An ode to Sarah Langs’ bravery through ALS battle (mlb.com)