Steve & Kate
"Life is full of surprises. This story has a good ending despite the rough start. The past three years have been horrible for me. The ALS Residence at the Leonard Florence Center for Living (LFCL) is licensed as a nursing home, so they were compelled by law to lock down our house during the pandemic. We were under the equivalent of house arrest for a year and a half. It was an awful time. We were quarantined and isolated. No friends or family were permitted. All our
caregivers wore masks, gowns and face shields. It was dreadful but at least no one got COVID.
The quarantine lockdown was finally over in the summer of 2021 but then the real nightmare began. ALS has long given me a severe drooling problem and my secretions got so bad that I was recommended to get a tracheotomy even though I am fortunate enough to breathe without difficulty 17 years after diagnosis. In August 2021, I got the trach, and it was an easy transition to make since I could still breathe well. The problem was a second surgery to get my feeding tube relocated. I was told that my old stoma would heal quickly. It did not. I had a quarter-inch hole in my belly that refused to heal. Any food, water, or medicine that I put in my stomach would come right back out. I was in the hospital for two months being fed intravenously and it was miserable. For the first time in my 17 years of living with ALS, I questioned my willingness to live. It was the lowest point in my life.
The best part of hitting rock bottom is that up is the only way to go. After three or four more surgeries, the doctors finally closed the hole and I got to go home. There was a little anxiety getting used to sleeping with a ventilator and being suctioned all day long. Fortunately, the ALS Residences at the LFCL, where I live, had just established two houses of 10 people specifically for people living with a ventilator. They hired a bunch of excellent respiratory therapists.
After all my pain and suffering, my life was about to change for the better. One of my RTs was funny and beautiful, and I fell in love with her. More importantly, she fell in love with me. If you know Kate Smith, then you know that she has the energy of 10 people. She quit her job at the ALS Residences so that we could pursue a relationship with no constraints. April 1st will be two years since she left the LFCL so our relationship could blossom. It has blossomed and I knew I'd like to return that commitment by asking her if we can spend the rest of our lives together. She said yes so, we've been engaged since New Year's Eve Eve. God willing, we will grow old together. I have never been happier. Life is GOOD!" - Steve Saling
"My name is Mike Ibarra, and I am a 31-year-old neurologist. I was feeling on top of the world as I was finishing my medical training, but in March 2023, I was diagnosed with ALS… the very disease process I had managed countless times. I felt scared, angry, and confused. This was not part of my life plan. Despite feeling lost, I was not alone. My tremendous support group helped pick me up throughout my ALS journey.
My family has been with me from the very start. I know the
news hit them as hard as it did me. Upon finding out, my parents moved in with me for two months, despite living on the opposite side of the country. My family has been everything I have needed them to be. Whether it was a shoulder to cry on, someone to vent to, to talk to or laugh with, my family was there. This support reminded me about the meaning of life and how I wanted to live mine. They have allowed me to find happiness throughout my ALS journey.
I cherish the friends I have and have made. They have been my support along the way and never fail to put a smile on my face. Their genuine compassion has helped me remember the joy in life and remember that I don’t have to live this experience alone. The dinners, drinks, hangouts, and trips will be memories for us all, showing how I was truly able to live. Throughout the chaos, I was able to meet the love of my life. This has been an experience I never knew was possible. One in which not even ALS was going to get between.
Despite living with ALS, I have truly been honored to be a part of this great ALS community of people with ALS, caregivers, supporters, and medical providers. Communities, like the one I made through ALS TDI, have made all this possible. They have given me support and a voice to share my ALS Love Story."
David and Scott
My brother David and I grew up in Fayetteville, NC through the 70s and 80s. We fought like a lot of siblings do as kids, but always loved each other and had a special bond being raised in a home that was significantly impacted by addiction. We both love cars and music and became especially close with each other once my brother left for college. We had an amazing relationship that allowed us to talk about literally anything without fighting with each other. We looked for ways to support each other as much as we could as we walked through life. Over time we drifted apart a bit as we both got married, had kids, traveled for work, etc., but we always loved each other dearly and cherished the times we did have together.
In 2017, David had just come to work with me at my company after years of running his own home theater installation business and we were so excited for the future and what we hoped to accomplish together. However, sadly, just a few months later he was diagnosed with ALS in October 2017. In that moment, we committed that we would spend as much time together as we could, that we would finally go race cars (something that we had planned to do in our retirement years), and that if ALS was going to take him, that we would both know that we did as much as we could to fight it!
We made some not-so-sound financial decisions to buy some 700 horsepower Camaros and hit the track! Little did we know that our passion to race for fun and to make memories would become so much more. Those we met in the racing community were so passionate about helping us and have become some of our most cherished friends. I am so proud of my brother, who he was, and how he inspired so many people to race with him to help others and work towards an end to this horrible disease. You can see the picture from his last day racing in August of 2019 where we worked to use a trilogy breathing machine to try and overcome the heavy g-forces and keep him on track. Sadly, it didn’t work, and he had to stop racing, but it shows you the fight he had in him throughout his battle with ALS!
My brother was the definition of an overachiever throughout his life, so in normal fashion David beat the odds with his long 5+ year fight against ALS. That fight along with who he was as a person inspired so many people on the Racing for ALS team to raise over 1.2 million dollars since June of 2018 in his honor to help fund the fight against ALS, and to help others battling this disease. Dave trusted in the Lord throughout and is in heaven today racing around somewhere! Lord willing, we will continue racing here to help others and continue the work to fund a cure for ALS!
We do that for David because we love him, and because of who he was. He always had a kind word and a wave no matter how he was feeling and of course a good joke. David loved being able to help others and was truly overwhelmed and beyond appreciative of the love shown to him by those who rallied around him. Even though a thank you doesn’t seem to suffice, we do thank everyone who has been a part of this journey and helped in our fight to #endals!