By Steve Ziegler
Note: In recognition of National ALS Awareness Month, The ALS Association is sharing many new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, powerful fundraisers, and the researchers fighting for a cure.
I’m proud to be the third person profiled in this series, and I’m happy to be able to tell you my story and why I continue to fight.
ALS is a devastating disease. There’s no way to sugarcoat it. While the statistics say the disease typically affects people between the ages of 40 and 70, it can strike anyone at any time, even someone as young as 16 years old.
ALS robs people of their ability to move, talk, swallow, and breathe. I was officially diagnosed with ALS when I was 32 years old. Over the course of about a year-and-a-half, I went from being completely independent to a quadriplegic and unable to breathe on my own. I’ve been fortunate to still be able to talk and swallow after having this disease for over three years. Many people with ALS are not as fortunate.
I live near St. Louis with my wonderful girlfriend, Lynn, and my amazing six-year-old son, Lucas.
In 2014, a few days after my first date with Lynn, I was referred to a neuromuscular specialist and my ALS diagnosis came shortly after that. I started seeing doctors because I noticed that everyday tasks, like turning the ignition on my truck and carrying Lucas, had become difficult.
Luckily, with the use of adaptive technology, I’ve been able to continue my successful career as an electrical and computer engineer with Boeing. Before ALS took away my ability to walk, I enjoyed playing with Lucas, working on my car and truck, riding ATVs, and playing softball.
Since receiving my diagnosis, I’ve told my story to anyone who would listen – at events put on by The ALS Association St. Louis Regional Chapter, to schools, to members of Congress, and in the media. It’s critical that people understand the challenges that come with facing ALS, and the need for more support for people living with the disease and our family members.
That’s why I’ll be helping to raise money for Team “Coach” in The ALS Association St. Louis Regional Chapter’s Walk to Defeat ALS. We’ve raised more than $11,000 in the last two years and plan on adding to that total. And it’s why I helped write guidance on ALS drug development for the FDA.
Next week, I’ll join more than 500 advocates in Washington, D.C., for my fourth National ALS Advocacy Conference. I look forward to educating lawmakers about the disease and helping to secure better health care policies for people with ALS and much-needed federal funding for research into treatments and a cure.
Earlier this year, The ALS Association presented me with a 2018 Heroes of Hope award. And, last month on the Missouri State Senate floor, I was honored with a Resolution acknowledging my efforts as an advocate for those living with ALS.
I was humbled and very grateful to receive these recognitions from The ALS Association and the Missouri State Senate. The driving force behind my advocacy efforts, which led to these honors, was the desire to advocate for those who are no longer able to do so for themselves.
Another great ALS warrior, Steve Gleason, had some thoughts which rang true for me. He said, “Life is difficult. Not just for me or other ALS patients. Life is difficult for everyone. Finding ways to make life meaningful and purposeful and rewarding, doing the activities that you love and spending time with the people that you love – I think that’s the meaning of this human experience.”
For those who may be newly diagnosed, ALS may be a part of you, but it doesn’t have to define you. Continue to participate in things you’re passionate about. You may no longer be able to coach your son or daughter’s soccer team, but you can still attend the games and watch your children play.
You may no longer be able to play the guitar in a rock band, but you can go to that rock concert with the rock band that you’ve always wanted to see. ALS will change the way that you live your life, but it can’t keep you from living it.
When I was diagnosed with ALS, I knew I had two choices. I could give up, or I could fight. I chose to fight. I’m fighting for Lucas, Lynn, my family, and my friends. And I’m fighting for future generations, letting them know we’re not giving up in our search for a cure.
I challenge you to fight along with me. Raise Your Voice with The ALS Association and me as we increase awareness of ALS and fight for a world without it.
Update your Facebook profile with the ALS Awareness frame. Contact your representatives in Congress. Recruit your friends to like The ALS Association Facebook page or follow the Association on Twitter. Promote a fundraiser. Host a fundraiser. Register for a Walk to Defeat ALS or a Team Challenge ALS event.
Together, we will be heard.