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Saying thanks now in case he can't later

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Photo by Dan Lassiter

Dan DeLong smiles while waiting to start filming a video for July ALS golf benefit.

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Photo by Dan Lassiter

Dan and Pam DeLong are interviewed by Bill Holtane of Sound/Video Impressions of Des Plaines, Ill for a video for a July ALS gof benefit.

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Photo by Dan Lassiter

Dan and Pam DeLong wait between shots during the taping of a video for an upcoming ALS benefit golf outing at their Clinton home.

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Photo by Dan Lassiter

Videographer Rick Arkels watches Dan DeLong's image on a monitor while filming the Clinton man who has ALS for an upcoming July ALS benefit.

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Photo by Dan Lassiter

Dan DeLong's image is seen on a video monitor as he is filmed sitting at his dining room table in Clinton for an upcoming ALS golf benefit.

TURTLE TOWNSHIP — For now, Dan DeLong still can fill 10 minutes with 10 stories that start, "Remember the time we...".

He still can smile the kind of smile that makes strangers feel welcome.

For now.

But not for long.

DeLong, 50, was diagnosed in February 2008 with amyotrophic lateral sclerosis, or ALS. ALS, commonly called Lou Gehrig's Disease, is a progressive, terminal disease. Often, patients lose muscle control in their limbs and eventually lose the ability to breathe or swallow.

DeLong is one of three people organizing a golf tournament to raise money to support the Wisconsin chapter of the ALS association.

DeLong plans to attend the July event at Janesville's Riverside Golf Course. He wants to personally thank golfers for their support.

But he fears by that time he might have lost his ability to speak.

Last week, a professional videographer recorded DeLong thanking golfers and filmed an interview with DeLong and his wife, Pam, at their home on County J in Turtle Township.

The video will play during dinner after the golf tournament.

DeLong invited The Janesville Gazette to watch the making of the video. The Gazette will not publish DeLong's recorded comments until after the fundraiser.

Changes

It's been six months since the Gazette first talked to DeLong about ALS. The biggest change in that time has been a decrease in core muscle strength.

DeLong is less able to hold himself upright in his wheelchair, although he still can.

He no longer can stand, and, while he can still use his hands to dial the cell phone strapped to his wrist, sometimes he asks others to do it for him.

He makes a visible effort to draw breath, although he still can carry on a conversation. DeLong sometimes uses a respiratory machine to help him breathe.

DeLong retired in December from The DeLong Co., his family's business in Clinton.

Shortness of breath is what makes talking difficult but not yet impossible, DeLong said. Loss of speech and the ability to swallow are common symptoms of ALS.

DeLong is ready with equipment that will help him keep talking. Doctors anticipated he could have lost that ability up to a year ago.

DeLong will use a laser strapped to his forehead to point to preprogrammed phrases on a monitor, he said.

"I've already got, 'Thank you very much for mowing the lawn. It looks nice,' or 'Thanks for coming to visit,'" DeLong said.

If only I had...

DeLong was playing softball when he first noticed the muscle weakness and twitching that are common early signs of ALS.

That was in June 2007.

He was diagnosed eight months later and spent a long time trying to hide the symptoms.

"Being from a small town, you know, I was kind of hiding the disease," DeLong said.

That's one thing he regrets, now.

Robin Stanczyk is a patient services coordinator with the Wisconsin ALS chapter. She heard DeLong "get his butt chewed" in a doctor's office one day, DeLong said.

DeLong had taken a couple nasty falls while refusing to use a cane or walker.

Stanczyk was thrilled when he agreed to use the walker with wheels that she suggested.

Sometimes, patients avoid using adaptive equipment because they feel like they're giving in to ALS, Stanczyk said.

"Who's going to win? If the remote's across the room, and you can't get up out of your chair to get it, and you refuse to get a lift recliner to get it, who wins?" Stanczyk said. "The remote does. You lose out.

"If you get the (lift) recliner, and you use it, and you can get up, who wins? The patient."

As DeLong progresses through the phases of ALS, it's all too easy to look back and see what equipment could have made things easier, his wife, Pam said.

"Once you get past each step, you think, 'Gosh, I should have... ," she said.

DeLong's wheelchair has made life easier for him and his family, DeLong said. If he could blink and make one thing happen, it would be to give all ALS patients a motorized wheelchair, he said.

Look, please don't stare

While he loves the chair, DeLong constantly can tell that it makes some people nervous, he said.

"Because, no matter how much people look past it and accept you and everything, when they see you with a cane, a walker, a wheelchair, you know they look and they don't know what to say," DeLong said.

DeLong isn't surprised some people he knows well are uncomfortable. He would have felt the same way, DeLong said.

What surprises him is the reaction from strangers or people DeLong considered mere acquaintances. They send encouraging letters or are warm and open in conversation, he said.

They are the Hospice Care volunteers and health care professionals that help him through the day.

"There are people I never knew existed on this earth that help people in helpless situations," DeLong said. "There's so many people that have given to me much more than I ever imagined."

WHAT IS ALS?

Amyotrophic lateral sclerosis, often called Lou Gehrig's Disease, is a progressive, degenerative disease that affects nerves in the brain and spinal cord. It affects the way the brain communicates with muscles.

-- May is ALS awareness month.

-- Symptoms of ALS are different for each person, but early signs often include muscle twitching, cramping or fatigue, slurred speech or a tendency to drop things or trip.

As symptoms progress, people with ALS often lose control of their hands or feet. They might have a hard time lifting, walking or doing day-to-day things such as opening jar lids or getting dressed.

Eventually, the weakness and paralysis spread, affecting the ability to speak, swallow or breathe.

The senses are not affected, and most people retain the use of their bladder and eyes.

In most cases, the mind is not impaired.

-- Recent advances in treatment and adaptive technology allow ALS patients to live longer, more productive lives. Half of all ALS patients live at least three years after they are diagnosed; 20 percent live five or more years; as many as 10 percent live for 10 or more years.

-- ALS affects about two people out of 100,000. That's about 15 new cases a day in the United States.

Men and women are affected equally.

The federal government recently passed an act creating an ALS registry, which could lead to more accurate data, said Lori Banker-Horner with the Wisconsin Chapter of the ALS Association.

-- Noted French neurologist Jean Martin Charcot first described the disease in detail in 1869. But ALS remains hard to diagnose and the cause still is unknown. There is no cure, and medical treatment is limited.

A diagnosis often involves months of testing while doctors eliminate other possibilities.

-- Lou Gehrig became the face of ALS in 1939 when he took himself off the New York Yankees roster after his hitting strength began suffering. The decision ended a 2,130-game streak.

On July 4, 1939, Gehrig told more than 62,000 Yankees fans he was the "luckiest man on the face of the earth" as he thanked his fans, his family and baseball officials for their kindness after his diagnosis.

"So I close in saying that I may have had a tough break, but I have an awful lot to live for," Gehrig said.

He died in 1941.

This summer marks the 70th anniversary of the speech.

Source: The ALS Association and www.lougehrig.com