A Fight Against ALS
A Fight Against ALS
A Fight Against ALS
The pavement was warm, the clouds overcast the sky, and between them both, bicycle racers from Kansas were jockeying for position in to the first corner in a square-circuit-criterium for the state championship in the state capital.
On that warm summer day in July, Hiram Salvini, a local business owner, family man and bicycle enthusiast had his sights set for gold.
Lap after lap Salvini waited patiently for his time to strike. Beads of sweat dropped from beneath his helmet and his tires streamed along on the pavement making that old familiar sound.
He breathed in deeply.. He focused..
Salvini made a break for it around the first corner of the final lap. "Everyone knew they had to be first around that corner if they wanted to win," he said with a look of recollection.
On the final stretch of that final lap with teeth grinding, muscles clenched and adrenaline flowing, he switched gears, stood up and sprinted for the finish, rocking his Cannondale from side-to-side pushing with all his might down in to the pedals, back up and then down, back up and then down again
Just over ten years later, on Sept. 15, 2009, Salvini was diagnosed with Amyotrophic Lateral Scerosis (ALS) also known as Lou Gehrig's disease. "It changed everything."
ALS is a disease in which nerve cells waste away and die in the brain and spinal cord and stop sending signals to the muscles.
The slow progression of the disease first weakens the muscles and eventually paralyzes them. The ability to speak fades, then the ability to swallow diminishes, and then, finally, the ability to breathe perishes as well.
Every 90 minutes a person is diagnosed with ALS, and every 90 minutes someone dies from the disease.
The average life, after diagnosis, ranges from 2 to 5 years.
There is no cure.
Salvini is currently enrolled in a clinical test in Kansas City, Kan., which is evaluating the safety and effectiveness of the drug ceftriaxone has on the nerve cells in people with ALS. "If nothing else it's research to help find a cure and to use my body as a Guinea pig for the tests," he said.
"A positive attitude and the hope they can find something that can slow the disease down" is one of the things that keep Salvini's head up.
His four children and his wife, Missy, whom he started dating in the ninth grade, keep him staying positive. "Each kid is special to me in their own way. They all have unique personalities and I am very proud of them," he said.
He also tries to stay active in his social life. He makes an effort to go in to work as much as possible and he said, "I still do what I can, grow up, play poker with friends, and drink beer through a straw." His favorite beer is Ad Astra.
Slowly Salvini is losing the ability to function. He has recently lost the ability to dress himself and now he's having troubles feeding himself as well.
Soon Salvini will be speaking through a machine with eye-recognition technology. He's been recording his voice so that the device will mimic his own. The device called Dynavox will be able to make phone calls just by recognizing the movement of Salvini's eyes. "It's even a remote control for the TV," he said with a smile.
Salvini strolls around in a red and black motorized wheel chair. He has "a bigger one ordered and on the way in." His hands are nearly permanently clenched and raising his arms above his waist is a challenge.
His hands are no longer able to grip the handle bars he once spent hours on each day. His legs no longer push down in to his pedals, back up and then down, back up and then down again. And no longer is he able to enjoy the freedom and camaraderie that cycling once provided for him.
"I was in the moment and nothing else mattered," he said, remembering standing on the podium and holding gold to the sky.
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