Stephen’s Story

Site created on November 1, 2018


September 11, 2001, can carry a different meaning for everyone. To some it means the loss of a beloved family member or friend. To others it means the loss of a sense of safety and security in the world.

Fast-forward 17 years later, for me 9/11 carried a new meaning and in a sense the same meaning I had about that horrific day-devastation, sorrow and loss.

On September 11, 2018 of this year, while sitting in the doctor’s office alone awaiting test results, I was officially diagnosed with ALS (Amyotrophic Lateral Sclerosis) or commonly known as Lou Gehrig’s Disease named after the famous New York Yankees baseball player who was diagnosed with it in the late 1930’s and eventually succumbed to the disease and passed away several years later.  

Shocked, devastated, and the feeling of loss, I began to weep into a towel right next to me as my neurologist gave me the news. I knew what the diagnosis meant. My life would change forever and my body along with it.

It wasn’t at all what I had expected to say the least.  You see, I use to be an elite world-class athlete and had been a competing athlete ever since I was 8yrs old. I had been quite healthy my entire life, never had to take any prescription drugs, only had the flu several times, no allergies, no immune deficiencies to speak of-nada, zippo. Perhaps the same story you would hear from Lou after his famous speech in Yankee Stadium when addressing the crowd of his retirement to the game he loved, and many others after him.

Amyotrophic lateral sclerosis (ALS) is a group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement. The disease is progressive, meaning the symptoms get worse over time.

In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, and stop sending messages to the muscles. Unable to function, the muscles gradually weaken, start to twitch (called fasciculations), and waste away (atrophy). Eventually, the brain loses its ability to initiate and control voluntary movements.

Currently, there is no cure for ALS and no effective treatment to halt, or reverse, the progression of the disease. Early symptoms of ALS usually include muscle weakness or stiffness. Gradually all muscles under voluntary control are affected, and individuals lose their strength and the ability to speak, eat, move, and even breathe.

Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. However, about 10 percent of people with ALS survive for 10 or more years.

And so, here we are several months later as the holidays approach, 9/11 has a new meaning to me, HOPE. Hope of being able to live as long as I can and be one of those outliers, to enjoy the time I have left with family and friends, and maybe just maybe help to find a cure to this horrific disease.

Newest Update

Journal entry by Stephen Dupree

Transitioning is never easy for a lot of people, yet it’s always around the corner. Ready or not, we all go through numerous transitions in our lives – changing jobs or losing a job, getting married or getting a divorce, having children. These become those weeks or months or longer of awkward emotional spaces where we have cut ties with what we know and have not quite settled into what is new.  Some we have planned and still others are unwillingly imposed on us.  Whatever the circumstances, navigating transitions can be difficult, presenting us with new problems and demanding us to respond in new ways. 


For me, the most recent transition has come in the form of having to relocate from my beautiful home in Boulder, Colorado where I have lived for almost 20yrs and had planed to live the rest of my life. The architecture layout of my house just wasn’t conducive to support me going forward nor did I have family living near by to help support me-having been single, never married with no children.


Therefore, my choice of where to relocate to was limited given a variety of factors, most importantly, the progression of my disease. Just doing the math and logical reasoning I had to relocate to Florida and live with my parents at their retirement home on a lake. I had to sell/donate everything I owned with the exception of two oil paintings since my parents had limited space.


After the decision was made in March to relocate, my parents and I boarded a private jet that a good friend of mine setup (Thanks again Mark!) and arrived at my parent’s lake house in April. (see pics)


Once arrived it set in motion a series of appointments over the next several months for additional equipment and setting up a home health team in support of trying to prolong the progression of my disease.


The transition here to Florida has had its own set of challenges mentally, physically, and emotionally, i.e., selling/donating all my possessions, leaving my home and friends, moving to an area where I don’t have a network of friends, living with one’s parents and having them become your caregivers as an adult, continued progression of my disease.


The continued progression of my ALS up to now has left me with having to incorporate a mechanical soft diet back in February (no more steaks, sandwiches, pizza, hamburgers, etc.) after a choking incident that took me to the ER as my surrounding muscles in my throat area have weakened, a ventilator at night to help me breath and expel excess carbon dioxide so I can sleep, use a walker full-time to get around for short distances and my manual or power wheelchair for longer distances as my spinal cord and upper and lower extremities have become weaker, utilizing a health aid for 3 hours a day 5 days a week to bath/shave/dress and provide physical therapy, and very soon use speech assistance technology devices to communicate as it is becoming difficult to talk.


Yet, I find solace staring out at the lake with all the wild life that feeds off it from my parent’s porch or living room.



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