An outpouring of support, thanks to the ice bucket challenge, is putting ALS (amyotrophic lateral sclerosis) at the forefront of awareness. And Chris Lamia of Spring Hill is thrilled with the results.
About this time last year, Lamia had only a slight knowledge of ALS. “I knew it was known as Lou Gehrig's disease,” he said. “And I only knew that much because of baseball.”
But after a doctor visit for problems with his back, Lamia became one of 5,600 people diagnosed with the neurodegenerative disease in the United States each year.
Lamia's only symptoms were troubling leg tremors and weakness in his lower extremities. He brushed them off as symptoms from back issues he had tried to rectify with surgeries.
He requested a second opinion, encouraged by his doctor, and received a confirmed diagnosis and the prediction of three to five years to live.
According to the ALS Foundation, ALS affects nerve cells in the brain and spinal cord. “The progressive degeneration of motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost,” the foundation states.
But you won't find Lamia surrendering to his disease or accepting he has limited time left. While admitting he at first was shocked, he played the pity role only briefly. “I realized my diagnosis was just words from a doctor,” he said.
Lamia began researching ALS and speaking with others who had the diagnosis. The ALS Foundation, he said, has been his lifeline, providing the kind of support through resources that have allowed him to live a functional and exciting life despite his disease.
The ice bucket challenge was created by the ALS Foundation to raise awareness, encourage donations and, hopefully, help find a cure. But Lamia said the foundation also is a viable resource that provides support, networking, equipment and supplies for families living with the disease.
Lamia is an advocate for the foundation that helped him obtain a breathing machine, which wasn't covered by insurance. It also offers counseling for him, his wife, Mauriah, and his three children, Nicholas, 16; Laney, 12; and Amelia, 2.
Lamia became part of a University of South Florida clinical study during his early diagnosis and saw a nutritionist to determine if modifying his diet might help. “I was basically told to just go home and do whatever I wanted,” Lamia said. It was like being told he had no hope.
So he followed the advice and packed on pounds. He seemed to decline physically and emotionally.
He realized his best defense against an accelerated decline was to find hope. “That's all I wanted,” he said. “I needed to believe there was hope.”
At his worst, he began to see his life through his children's eyes. “What kind of a role model did I want to be for them?” Lamia said he asked himself.
He decided to begin a journey of clean eating and living, modifying his nutrition plan to include only healthy organic foods. He removed gluten from his diet and began eating no more than 2,000 calories daily.
He began to feel stronger, had fewer tremors and significantly reduced his pain. He even stopped taking medication that was making him detached from the life he wanted to live.
“Not long ago I was walking with the help of a cane,” Lamia said. Now he walks with deep strides, unassisted, and rides his Harley motorcycle.
Lamia always has been something of a giver, he said. His story isn't about altering a selfish personality or finding a warm heart after facing the reality of his mortality. Instead, Lamia found reinforcement for his belief that the power of the mind can heal anything.
“If you think you're going to die in three years, you will,” he said. Even USF is confused by Lamia's reversal of symptoms and lack of physical decline.
Lamia isn't in denial. He says he is reminded regularly that ALS hasn't gone away. But he is proof that choosing to live might be the best road to recovery.
And every day, he said, is his best day.