Health & Medicine

Video | ALS diagnosis made advocates of couple who are counting their days together

Since Paul Light was diagnosed with ALS last year, he and wife Pam have become activists for the terminal illness, also known as Lou Gehrig's disease.
Since Paul Light was diagnosed with ALS last year, he and wife Pam have become activists for the terminal illness, also known as Lou Gehrig's disease. Lexington Herald-Leader

When Pam and Paul Light met, it was love at first sight, their engagement sealed with a cigar band because that's what was handy.

They married six months later. They went on to raise two sons, recently welcomed twin grandchildren and have enjoyed many trips.

But after 38 years together, the Lights are learning to say goodbye and trying to find the best use of the time they have left with each other, until ALS claims Paul as another victim.

Each Sunday Pam Light helps her husband, whose hands no longer respond to commands from his brain, dress and shave and tie his shoes. Then, after the early service at Lexington's Centenary United Methodist Church, Paul Light sets out to help others.

He wheels his silver walker into the parking lot to direct the short burst of pre-Sunday school traffic. Even last winter when snow was on the ground most of November, he managed to make three out of four Sundays.

It is important, they agree, to do the most they can while Paul Light, 68, is able. A Vietnam Navy veteran, he even jokes that if by some chance he gets hit by a car, he has the frame of his walker to protect him.

The life expectancy of someone diagnosed with ALS is four to five years. Paul's volunteer work is a part of the couple's advocacy for better treatment and ultimately a cure for the disease. Pam is chairwoman of Walk to Defeat ALS, which will take place Saturday at Rupp Arena.

Dr. Edward Kasarskis, director of the ALS center at the Kentucky Neuroscience Institute at the University of Kentucky, said ALS patients and their families often find a way to make the most of the time they have left, but he calls the Lights "inspirational."

Kasarskis said that after years of dealing with ALS patient he can predict who will rally to live their lives to the fullest and who will fade away. And although he's known the Lights for just a little more than a year, he suspects their work to raise money and advocate for better treatment "is what they have probably always done in one way or another."

It's no surprise that Pam Light, who has had a long career in advertising and marketing, wanted to make some noise to combat what she calls "a very quiet disease."

"We made a decision to just be advocates," she said. "The state (ALS) association has just been a tremendous support for us."

ALS is a degenerative neurological disease. Patients with ALS — also known as Lou Gehrig's disease — generally lose the use of their limbs first and slowly are unable to do the most basic functions unaided. Including breathing.

In spring 2011, Paul Light noticed a problem in the fingers of his left hand. The active IBM retiree, who was working at The Home Depot, went to his family doctor, who suspected that nothing more serious than arthritis or carpal tunnel syndrome was to blame. Light was treated with a cortisone shot.

But it didn't help for long.

Eventually he found his way to Kasarskis. When you are seeing a doctor who specializes in ALS, Light said jokingly, "It's never going to be good news."

And it wasn't. Kasarskis told the couple that Paul Light had the progressive, terminal illness but that Kasarskis and the staff at the ALS center would do all they could to help.

"I just knew it was bad. We just didn't know how bad," Pam Light said.

They quickly learned there was little they could do to stem the disease.

"There is no known cause, no treatment, no chemotherapy," she said. "It's terminal."

Pam Light deals gently with those who try to bolster her spirits by saying how well her husband looks. Trim and handsome, Paul Light barely looks ill. But as part of a support group for ALS patients, they've seen the steady toll the disease takes and know they won't escape it.

They are selling the multistory home where they thought they would grow old and watch their grandchildren thrive. They are moving to a ranch equipped with the latest in equipment to help the disabled. It's a tangible sign, Pam Light said, of letting go.

Paul Light's days on parking lot duty might be numbered as the weakness is spreading from his hands to his arms, making it increasingly difficult to lift his walker the inch needed to clear cracks in the sidewalk.

Even as they try to be as positive as possible, they know their days together are at the point that they can be measured. When asked what he'd like to say to someone else who has been diagnosed with ALS, Paul Light stops a minute, breathes deeply, blinks back tears and says, "Live life to its fullest."

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