ALS Air Force Veteran Refuses to Stop Living
Everyone remembers the ALS Challenge campaign to raise awareness about the neurodegenerative disease, Amyotrophic lateral sclerosis. But not everyone knows the stories of the people suffering from this disease and what it does to those afflicted. As it progresses throughout the stages of the disease, it begins to affect the brain and the spinal cord, ultimately resulting in full paralysis. However, Juan “Johnny” Pena says he lives with ALS, but he is not dying from it. Pena, 74, now has been living with ALS, also known as the Lou Gehrig’s disease, for 12 years.
On average, ALS patients have a three to five year lifespan after diagnosis and only 20 percent of people live past five years. “I’m not average,” Pena said. “I went beyond the five years. Only 20 percent of people survive past five years, and here I am 12 years later.”
When Pena was younger and not aware of his disease, he was ready to live life. “Before I received the diagnosis, my wife and I were going to live happily ever after in our Florida home on the beach.” Pena took three tests before accepting the diagnosis.
Pena and his wife, Jean, decided that he could go two routes with this disease. He could wait and die, or he could live life with her while he was able to do so. Although Pena was determining whether he should be hopeful or realistic, he was still stubborn about being helped by using devices that would make life easier for him. “My brother brought me a wheelchair. I told him to get out of my house, I didn’t need a wheelchair to get around, it was Mom’s. Then, a few days later, I said, ‘Oops, Junior can you bring me that wheelchair?’ I wanted to go outside, so I had to accept the different things that were available to me.”
Despite losing the ability to walk and only being able to move his head slightly, Pena is still full of life and refuses to feel sorry for himself. He thinks about the life he could have lived, but he is realistic about his circumstances. “All those things were so much fun to do — but that’s not where I’m at now, so I dedicated myself to the things I can do.”
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