Executive finds new strength in disease's legacy
Neil Alexander, 46, recently diagnosed with Lou Gehrig's disease, speaks at The Pittsburgh Foundation about the loss of movement in his left hand.
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Neil Alexander has been given a bad break.
In June, the 46-year-old husband and father of two young children from O'Hara was diagnosed with amyotrophic lateral sclerosis.
ALS is a neurodegenerative disease that leads to the "glass coffin." The mind remains intact, but a person with ALS loses use of his hands, arms and legs, then has trouble swallowing and breathing. Most die from suffocation three to five years after diagnosis.
"Not only is there no cure for ALS, there's no effective treatment whatsoever," said Mr. Alexander, the director of corporate services for Downtown-based financial management firm Hefren-Tillotson Inc.
When he learned he had the disease, "all the air left the room," Mr. Alexander said. Yet in the days after his diagnosis, Mr. Alexander, a lifelong baseball fan and history buff, took solace in the example of baseball legend Lou Gehrig, who got his bad break more than seven decades ago.
ALS ended the career of Gehrig, a Yankees Hall of Famer, but in a 1939 speech at Yankee Stadium he said he still considered himself "the luckiest man on the face of this earth." Since his death in 1941, ALS has become known as Lou Gehrig's disease.
Mr. Alexander and his wife, Suzanne, decided they were going to approach the disease with the same optimism and grace displayed by Gehrig and his wife.
"When I was diagnosed, I felt like I had been inducted into a club," Mr. Alexander said. "Somebody was saying to me somewhere, 'Hey, we know this is pretty tough. But this is how you are expected to act. And you are expected to act like this, because this is the standard that Lou Gehrig set.'
"And rather than being a burden for me, it was a strength."
Other organizations, such as the ALS Association Western Pennsylvania Chapter, are involved in ALS support and research efforts, but the Alexanders plan to use his diagnosis to create their own rallying cry.
They have established a fund at The Pittsburgh Foundation that will increase awareness of ALS, help finance medical research and offer support to people with ALS in Western Pennsylvania. They believe the effort, which will extend beyond Mr. Alexander's life, will also create a legacy for their children, Abby, 10, and Patrick, 8.
At The Pittsburgh Foundation's Downtown offices Wednesday, Mr. Alexander unveiled the website -- LiveLikeLou.org -- that will support his mission. He plans to post photographs on the site of his body as the disease progresses, a display that the Alexanders said will be a "journey of strength."
Mr. Alexander has drawn on the example of Gehrig, but Grant Oliphant, president and CEO of The Pittsburgh Foundation, compared him to another man who faced death with courage: Randy Pausch, the Carnegie Mellon University professor who gave advice on living while he was dying from pancreatic cancer.
Seven months after his diagnosis, the disease has already done physical damage to Mr. Alexander, a competitive swimmer who just a few years ago convinced his boss at Hefren-Tillotson to go skydiving with him. He has lost nearly complete use of his left hand and half the use of his right arm. His thighs ache, he must clear his throat frequently and he has noticed some slight changes in his speech. He has reassured his son, saying, "If this is good enough for Lou Gehrig, it's good enough for your dad."
And like Gehrig, he still considers himself a lucky man. His journey so far -- which includes five years as an officer in the Los Angeles Police Department, a law degree from the University of Pittsburgh and a 14-year career at Hefren-Tillotson -- has made for an "amazing life."
"I met the woman of my dreams. I've had two amazing kids. I accomplished my childhood dream of becoming a police officer," he said. "I wish it would go on and on, but at this point, I'm not going to start complaining, and we hope to create a legacy for our children, that we didn't just roll up in a corner when we got this diagnosis."
First Published February 16, 2012 12:00 am