The Luckiest Man: Living with Lou Gehrig's Disease




One in an occasional series by The Pittsburgh Press

On a March day in 1992, when Neil and Suzanne Alexander eloped at a church in Redondo Beach, Calif., they made a promise to each other.

"Whatever joys, whatever trials life has to offer, we will accept them gladly, together," Mrs. Alexander wrote and both of them vowed.

The vow they made hangs, framed, on the wall of their home in O'Hara, and the past two decades have brought many joys. Mr. Alexander, 46, and Mrs. Alexander, 44, have two children, Abby, 10 and Patrick, 8. They have supportive friends and family, a comfortable home and two Boston terriers.

But in June, Mr. Alexander, director of corporate services for Downtown-based financial management firm Hefren-Tillotson Inc., got a bad break. He was diagnosed with ALS, more commonly known as Lou Gehrig's disease.

It's also called the glass coffin: a person's mind stays intact while his motor neurons progressively die, often leading to paralysis. The life expectancy for the average ALS patient is two to five years after diagnosis.

At the J. Verno Studios on the South Side on Saturday night, the Alexanders were among friends and family. There were toasts and dancing, sushi and a chocolate fountain.

Twenty years after their wedding and nine months after their diagnosis, they renewed the vows that they said they still live out every day.

"I think when you are young and excited, it's a fresh new beginning," Mrs. Alexander said. "You never expect, you never think about the bad stuff. You are only excited about the good parts. But when we said them, we meant them."


NEIL ALEXANDER, PITTSBURGH BORN, OHIO RAISED and educated at Fordham University in New York City, moved to California when he was 23. His childhood dream was to become a big city police officer, and he headed west to fulfill it.

A month after he arrived in Los Angeles, he went running on Manhattan Beach. It was the Fourth of July, and Suzanne Coleman was the only woman on the beach reading a book.

Mr. Alexander ended up on her towel, under the guise of needing advice on a place to live. It was an excuse to talk to her. He already had a place to live.

They exchanged numbers, but neither had a pen to write with, so Mr. Alexander ran two miles home, trying to keep the number in his mind. When he got to a pen, his mind went blank. He wrote down six permutations. The first one was right.

They lived the beach life for five years in Los Angeles, where he served as a police officer, but decided they didn't want to raise a family there. After a nationwide search, they chose Pittsburgh. Mr. Alexander was accepted to University of Pittsburgh Law School, and they moved to Squirrel Hill with a car and a cat.

As Mr. Alexander started a career at Hefren-Tillotson, Mrs. Alexander attended graduate school for business and worked as a consultant and a human resources executive. They made their home in O'Hara and watched their children grow. On their 19th wedding anniversary last year, they talked about going on a tropical vacation, just the two of them, for their 20th.


AMIDST THE JOYS, CAME THE TRIAL. Mr. Alexander's muscles started twitching, and on June 29 he received the diagnosis. It was ALS.

A baseball fan and history buff, Mr. Alexander likes to call it Lou Gehrig's disease, after the baseball legend who may be the most well-known person to be diagnosed with ALS. He calls it that, because although he could react to the disease with anger and depression, he has decided to react the way Gehrig did, with dignity and grace.

The Alexanders founded LiveLikeLou.org, a charitable fund with The Pittsburgh Foundation that they hope will be an organization that endures beyond Mr. Alexander's lifetime. They will use it to raise awareness about ALS, to provide care to people with the disease in Western Pennsylvania and to support research for a cure.

And instead of a tropical vacation, they decided to host a 20th wedding anniversary party to launch the fund. Their daughter, Abby, sang a song from the musical "Wicked" and their son, Patrick, wrote a piece about how he knows his parents love each other ("They sweet talk each other like crazy.")

Even as they prepared for the anniversary party, Mr. Alexander's disease was always present, slowly progressing. "This is like death by a thousand cuts," Mrs. Alexander said at their house, two weeks before the party.

Her husband's muscles twitch constantly and he clears his throat frequently. Mrs. Alexander ties her husband's ties and cuts his food. Their daughter cried when they replaced door knobs in their home with levers so Mr. Alexander could open them.

But on the night of their wedding celebration, the focus was on the joys, not the trials. Gehrig said the words first, but the Alexanders have made them their own: they believe they are the luckiest family on the face of this earth. On Saturday it was standing room only as more than 300 people witnessed the couple renew the vows of marriage. Later, Mr. Alexander's father gave a toast, and so did Mrs. Alexander's mother.

And when the first lines of the first song began to play -- "If you are falling, then I would catch you" -- the bride and groom danced.


This story originally appeared in The Pittsburgh Press. For information about subscribing go to http://old.post-gazette.com/trypress/ Kaitlynn Riely: kriely@post-gazette.com or 412-263-1707. First Published March 28, 2012 8:00 PM


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