Reflecting on My ALS Journey
It was back in 2005 when I first sensed that something was amiss. As the athletic director of an education nonprofit in Albuquerque, New Mexico, part of my responsibilities included securing funding for under-resourced school programs. Each Monday, I would find myself signing approximately 100 checks to support these schools. Normally, this was a straightforward task, but I started to notice a troubling weakness in my hand.
After a visit to my primary care physician, we initially speculated that the problem might be linked to an old neck injury from my football days. However, an MRI revealed no damage to my spinal cord or nerves, so I continued with my daily activities. Unfortunately, I soon began to experience a troubling weakness in my right arm and noticed some slurring in my speech. My doctor encouraged me to learn about amyotrophic lateral sclerosis (ALS) as a precaution and referred me to a specialized ALS clinic.
In 2011, at the age of 56, a neurologist delivered the confirmation I had been dreading: ALS. The diagnosis struck me like a heavy blow. I had always been an active person, and the uncertainty of what the future held for me, my wife, and our children felt incredibly overwhelming. I found myself preoccupied with thoughts of setting up advance directives, drafting a will, and settling debts. The weight of it all became so intense that I had to call my wife to pick me up, as I was unable to drive myself home.
Though the prognosis for ALS can be quite bleak, I have been fortunate with the relatively slow progression of my condition. While life expectancy after the onset of symptoms is typically three to five years, I was able to work and drive for five years following my diagnosis. I joined a support group, where I connected with fellow ALS fighters and learned from their experiences. By 2016, I had transitioned to using a cane and a walker to get around.
In 2022, I discovered a treatment option called RADICAVA ORS (edaravone) that could potentially slow the progression of ALS. After discussing the possible benefits and risks with my doctor, I decided to give it a try. Clinical studies indicated that RADICAVA could slow the decline in physical function by 33% compared to a placebo. Common side effects included bruising, difficulty walking, and headaches, with some patients also reporting fatigue. It’s essential to maintain an open conversation with your healthcare provider regarding any treatment.
Living with ALS has significantly transformed my everyday life, but I choose not to let it diminish my spirits. Now at 69, I rely on a power wheelchair, face challenges with hand mobility, and have a weakened voice. I utilize a robotic feeding system for my meals and a feeding tube to ensure I receive adequate nutrition. With my wife serving as my primary caregiver, my children have the opportunity to live their lives normally.
On days when I feel my best, I cherish outings with friends or enjoy watching sports at a local restaurant with my brother. The flexibility offered by the oral treatment allows me to travel, and my wife and I continue to plan RV trips and vacations together. Despite the hurdles, I am gradually checking items off my bucket list, which includes attending sports events and taking road trips.
Sharing my experiences with ALS provides me with comfort, and I hope that others dealing with this disease can find strength in my story, just as I did within my support group. Mitsubishi Tanabe Pharma America’s Share Your Story initiative offers a valuable platform for individuals affected by ALS to share their narratives and highlight the importance of treatments like RADICAVA ORS.
Thirteen years after my diagnosis, I find it remarkable that I am still here, savoring precious moments with my loved ones. My philosophy is straightforward: take each day as it comes, focus on what truly matters, and let go of what I cannot control. Each day I wake up, I strive to make the most of my abilities and spend quality time with family and friends, which brings me immense happiness.
