Recognizing the Signs
Back in 2005, I started sensing that something was amiss. As the athletic director for an educational nonprofit in Albuquerque, New Mexico, part of my responsibilities involved fundraising for underfunded school programs. Every Monday, I would sit down to sign approximately 100 checks for these schools. Normally, this task would be effortless for me, but I began facing difficulties due to a newfound weakness in my hand.
Seeking Answers
After discussing my symptoms with 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 physical damage to my spinal cord or nerves, so I continued my daily activities. Unfortunately, I soon started feeling weakness in my right arm and noticed my speech becoming slurred. My doctor recommended that I learn about amyotrophic lateral sclerosis (ALS) and referred me to an ALS clinic for further evaluation.
The Diagnosis
In 2011, at the age of 56, a neurologist confirmed the ALS diagnosis after conducting a series of tests. The news was devastating and felt like a heavy weight on my shoulders. Having always been an active person, the uncertainty of my future, along with that of my wife and children, was overwhelming. I found myself consumed by thoughts of setting up advance directives, writing a will, and settling debts. I was so distraught that I had to call my wife to come and pick me up because I couldn’t drive myself home.
Finding Hope
Despite the daunting prognosis associated with ALS, I feel fortunate that my disease has progressed slowly. While the average life expectancy after the onset of symptoms is typically three to five years, I was able to continue working and driving for five years following my diagnosis. I joined a support group where I connected with fellow ALS warriors and gained valuable insights from their experiences. By 2016, I found myself relying on a cane and walker to get around.
Exploring Treatment Options
In 2022, I discovered a treatment called RADICAVA ORS (edaravone) that might help slow the progression of ALS. After weighing the potential benefits and risks with my doctor, I decided to pursue this option. Clinical studies indicated that RADICAVA could slow the loss of physical function by 33% compared to a placebo. Common side effects include bruising, walking difficulties, and headaches, with some patients reporting fatigue. It’s essential to maintain open communication with your healthcare provider about any treatment.
Adapting to Change
Living with ALS has profoundly transformed my lifestyle, but I’m determined not to let it dim my enthusiasm for life. Now at 69, I rely on a power wheelchair, struggle with hand mobility, and experience a weakened voice. I utilize a robotic feeder for meals and a feeding tube to ensure I receive proper nutrition. With my wife as my primary caregiver, my children are able to lead their own lives without being overly burdened.
Embracing Life
On brighter days, I enjoy outings with friends or catching sports games at a local restaurant with my brother. The flexibility of the oral treatment enables me to travel, and my wife and I continue to plan RV trips and vacations. Despite the hurdles, I’m gradually checking items off my bucket list, including attending various sports events and going on road trips.
Sharing My Story
Sharing my journey with ALS brings me comfort, as I hope my experiences can inspire others facing similar challenges. Mitsubishi Tanabe Pharma America’s Share Your Story initiative is a valuable platform for individuals affected by ALS to share their experiences and highlight the importance of treatments like RADICAVA ORS.
Living in the Moment
Thirteen years after my diagnosis, I am amazed that I’m still here, cherishing 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. Waking up each day, maximizing my abilities, and spending quality time with family and friends fills my heart with joy.
