I Live With Lou Gehrig’s Disease—Here’s What I Want You to Know

Back in 2005, I started to notice something wasn’t quite right. As the athletic director for an education nonprofit in Albuquerque, New Mexico, part of my job involved raising funds for underfunded school programs. Every Monday, I would sit down to sign about 100 checks for these schools. Typically, this task was a breeze, but I began to struggle due to weakness in my hand.

After consulting my primary-care doctor, we initially thought the issue stemmed from an old neck injury from my football days. However, after an MRI showed no physical damage to my spinal cord or nerves, I carried on with my daily routine. But soon enough, I began experiencing weakness in my right arm and slurring in my speech. My doctor suggested I educate myself about amyotrophic lateral sclerosis (ALS), just in case, and referred me to an ALS clinic.

At 56 years old, in 2011, a neurologist confirmed the diagnosis of ALS after a series of tests. The news hit me like a ton of bricks. I had always been active, and the uncertainty of what lay ahead for me, my wife, and our children weighed heavily on my mind. Thoughts of setting up advance directives, writing a will, and clearing debts consumed me. I was so overwhelmed that I had to call my wife to come and take me home as I couldn’t drive.

Despite the grim prognosis of ALS, I count my blessings for the slow progression of the disease in my case. While the life expectancy post-symptoms onset is usually three to five years, I managed to continue working and driving for five years after my diagnosis. I joined a support group where I met fellow ALS warriors and gleaned insights from their journeys. By 2016, I had to rely on a cane and walker to navigate my surroundings.

In 2022, I learned about a treatment called RADICAVA ORS (edaravone) that might help slow the progression of ALS. After discussing the potential benefits and risks with my doctor, I decided to give it a shot. Clinical studies showed that RADICAVA helped slow physical function loss by 33% compared to a placebo. The most common side effects include bruising, walking difficulties, and headaches. Fatigue was reported in some patients taking RADICAVA ORS. It’s crucial to have an open dialogue with your healthcare provider about the treatment.

Living with ALS has drastically altered my lifestyle, but I refuse to let it dampen my spirits. At 69, I now rely on a power wheelchair, struggle with hand mobility, and have a weakened voice. I use a robotic feeder for meals and a feeding tube to ensure I get the necessary nutrients. With my wife as my primary caregiver, my children can lead normal lives.

On good days, I relish outings with friends or watching sports games at a local restaurant with my brother. The flexibility afforded by the oral treatment allows me to travel, and my wife and I are still planning RV trips and vacations. Despite the challenges, I’m slowly ticking off items on my bucket list of sports events and road trips.

Sharing my ALS journey brings me solace, hoping that others grappling with this disease can draw strength from my experiences, much like I did from my support group. Mitsubishi Tanabe Pharma America’s Share Your Story initiative provides a platform for those impacted by ALS to share their narratives and shed light on the significance of treatment with RADICAVA ORS.

Thirteen years post-diagnosis, I marvel at the fact that I’m still here, cherishing moments with my loved ones. My mantra is simple: take each day as it comes, focus on what truly matters, and relinquish control over the uncontrollable. Waking up each day, maximizing my limited abilities, and spending quality time with family and friends bring me immense joy.