Former Mecklenburg County Commissioner Dan Ramirez has raised lots of money for political races. But the fundraiser he's promoting now is in a different league. "I am running the 'Ultimate Race of My Life,' " Ramirez writes in his invitation to an Aug.28 benefit for the Joe Martin ALS Foundation. Ramirez, 65, is using the event to disclose publicly that he was diagnosed in February with ALS - amyotrophic lateral sclerosis - commonly known as Lou Gehrig's disease. It's the same disease that took the life of former Bank of America executive Joe Martin, who died in 2006 after a very public 12-year journey. Until now, Ramirez and his family haven't told many people about his disease. "I am basically a very private person," he said this week at his SouthPark home. "I didn't want people to know." But Ramirez changed his mind after friends and relatives began asking about his health, noticing his 50-pound weight loss. His wife, Cecy, and the couple's three grown daughters encouraged him to be more open about his illness so they could all benefit from the prayers and support of others. They agreed to use the opportunity to try to do something good for the community. "We're giving back to this city that has given us so much," Cecy Ramirez said. After diagnosis, 'I was numb' Ramirez first noticed something wrong about a year ago when he began having trouble breathing. He saw multiple doctors. "We saw hematologists, oncologists, nephrologists. Every kind of 'ologist,' " Cecy Ramirez said. "They have to rule out so many things." After many tests, a Charlotte neurologist diagnosed ALS on Feb. 14. "I was numb," Dan Ramirez said. "I knew it was bad, but not as bad as after I read about it. It really turned my world upside down." ALS is a degenerative disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. The disease affects people differently. It progresses from minor muscle weakness to slurred speech and weakness in the arms and legs to paralysis. There is no cure. Typically, life expectancy after diagnosis is five years. Martin lived for 12 years. In the end, he couldn't walk or talk or move anything but his eyes and a few facial muscles. And in that condition, he wrote two books and countless emails, aided by a computer that responded to his eye movements. One of the first people Cecy Ramirez called was Joe Martin's brother, former North Carolina Gov. Jim Martin, whom she had known for years. Through him, she learned about the foundation that created and supports the ALS clinic at Carolinas Medical Center. Ramirez, who is a patient there now, said his only symptom so far is the breathing difficulty that diminishes his voice. In June, he and his wife went to the Cleveland Clinic where he received a "diaphragm pacing system" to preserve the strength of his diaphragm that is needed to breathe. In the outpatient surgery made famous by the late actor Christopher Reeve, doctors threaded wire-like electrodes through Ramirez's abdomen and attached them to his diaphragm. The electrodes send electrical impulses to the muscle, forcing it to contract. The impulses come from a battery inside a palm-sized device that Ramirez keeps in his pocket. 'I'm going to beat the odds' Six months after the diagnosis, sitting with his wife of 44 years and surrounded by pictures of their children and eight grandchildren, Ramirez is philosophical. "I've lived a good life. I don't have any regrets. I accomplished most of the things I wanted." Born in a poor neighborhood in Bogota, Colombia, Ramirez moved to the United States with his wife and baby daughter in 1970. His degree in civil engineering had led to a job offer in Fort Worth, Texas. He recalls those days with a joke: "At that time, the minimum wage was $3.25 and hour. And I was making a lot. $3.50." In 1974, they moved to Charlotte. And four years later, Ramirez started his own business, now called Nova Digital Systems, a geographical information systems company. A Republican, he was the first Hispanic elected in Mecklenburg, in 2002 and 2006. "My journey hasn't been quite easy," Ramirez said. "The challenges I faced, I have taken them with courage. I feel the same here. The challenge is there to be conquered. I'm going to beat the odds." Copyright 2012 The Charlotte Observer. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
Charlotte Observer: Former Mecklenburg Commissioner Dan Ramirez Facing Lou Gehrig's Disease
By Karen Garloch, Charlotte Observer • Aug 24, 2012