I am Scott Ciufo
living with ALS
My condition is ever changing and so the way in which I am cared for is ever changing. Just when we get comfortable with a routine, it must change to accommodate new needs.
I was recently asked by the ALS Association if I would be willing to write a little something since it is May, ALS Awareness Month. To tell my story, or my experience with this relentless monster, called Amyotrophic Lateral Sclerosis, Motor Neuron Disease (MND) or Lou Gehrig’s Disease. Is my story unique, or different from the approximately 16,000 affected here in the United States, or the estimated 420,000 globally? More than likely yes, and no.
As some know, and most don’t, this disease can affect anyone, anywhere, and at any age. And like “The Iron Horse” Lou Gehrig, I too was a healthy six-foot tall, two-hundred pound man that enjoyed many sports in my life, including baseball. As a true fan of the game since I was a young lad, I knew the story of this humble, legendary ballplayer named Lou Gehrig. I also was aware of the disease that ended his career over eighty years ago. However, being aware of it, and actually living with this miserable disease are two different things entirely.
Those three letters, ALS, entered our lives in April of 2016, when I was officially diagnosed by a neurologist in Denver, Colorado. Thus, ending my twenty-eight year career in the ski industry, and uprooting my wife and three children from our lives in Colorado to move closer to family as we attempted to navigate this new way of being.
My story actually started one year prior from my diagnosis when I took an unforeseen violent fall on my skis. I had hit a large hole in the snow, and double ejected out of my skis landing some twenty feet downhill. My body impacted the hard packed snow in an upper body whiplash motion, rendering me unconscious for approximately a minute. I fractured three ribs, sustained a concussion, and was certainly extremely sore for quite some time.
What followed between my accident, and my diagnosis was the onset of anxiety/panic attacks, a fear of heights, depth perception issues, waking up with a sore neck, cramps in my calves, very minor almost undetectable fasciculations, and gradual weakness in my hands along with muscle wasting in my upper body. The atrophy spread slowly to include my lower body as well and at this time I am unable to walk, stand, use my arms or hands, have a feeding tube as I can no longer swallow effectively and am dependent on my Trilogy Bi-Pap machine 24/7 to breathe. I do still have some control of my head movement and I can still speak and be understood by my family.
There is no instruction manual, no roadmap, and without a doubt, no easy process to receiving immediate answers to the unlimited questions and challenges that come. In fact, speaking for my wife and I, those questions and challenges don’t stop. My condition is ever changing and so the way in which I am cared for is ever changing. Just when we get comfortable with a routine, it must change to accommodate new needs.
Between the bad days and good days, we will continue to laugh, love each other, and more importantly, hold on to hope.
Best to all,
No White Flags