Clinton man encourages open dialogue about Lou Gehrig’s Disease
Saturday, November 22, 2008 • JANESVILLE, WI

Dan DeLong of Clinton is living with ALS, better known as Lou Gehrig's Disease.



TURTLE TOWNSHIP — Losing a bet isn’t always a bad thing.

If your friends will take your money, it means they’re still you’re buddies. They still see you as the same old guy.

That means a lot to Dan DeLong.

DeLong, 49, was diagnosed in February with amytrophic lateral sclerosis, commonly called Lou Gehrig’s Disease. He first noticed muscle weakness and twitching, common early symptoms of the degenerative nerve disease, in June 2007.

Others noticed too, but DeLong hesitated to talk about what was happening to his body until he had a definite diagnosis.

Because, while the cause of ALS is a mystery, the end result isn’t.

ALS is fatal.

That’s a lot for people to take in, especially because the disease has no specific timeline, he said.

“There’s no expiration date,” DeLong said. “It could be three months, six months, six years or 10 years.”

DeLong’s blue eyes crinkled into a smile when he said he knew his friends had accepted the situation.

“They weren’t afraid to take my money anymore when we bet on NASCAR races,” he said.

For now, DeLong’s handshake is as warm and firm as ever. You might have to reach for his hand, though, because he cannot lift his arms. He can move his hands from side to side, and if he holds his hands together, he can lift them toward his face.

Because DeLong can’t bring his hand to his ear, his daughter came up with a “fix” to help him use his cell phone. She used Velcro to stick the phone to an iPod holder he wears strapped to his left wrist. When the phone rings, DeLong can slide his right hand across his lap and answer the phone with one touch. He wears a hands-free earpiece to listen and talk.

DeLong’s ALS manifested itself in a typical way, although there are no rules to the pace or the order the disease affects parts of people’s bodies, said Lori Banker-Horner with the Wisconsin Chapter of the ALS Association. DeLong said his left shoulder and left foot were affected first.

Eventually he could lose the ability to swallow, speak or breathe.

It was on the ball field—just like former New York Yankees great Lou Gehrig—that DeLong’s body first started disobeying his mind. Last summer, he noticed he was having a hard time hitting the softball out of the park and his throws didn’t have their usual snap.

For a while, he agreed with his wife, Pam, that he was probably just out of shape.

“But one day, I hit the ball as hard as I could, and it only got as far as second,” DeLong said. DeLong himself tripped while running the bases.

“I felt like a scarecrow on its worst day,” DeLong said.

He doesn’t look the part. Sitting in his electric wheelchair, DeLong is still the epitome of the broad-shouldered, Clinton agribusiness man. He still works at his family’s grain elevator, The DeLong Co., 513 Front St., Clinton, where he has for 30 years.

He also still serves as the chairman of the Turtle Town Board. He will keep working as long as he can, DeLong said.

“It’s hard to keep up with him, sometimes,” Pam said.

DeLong gives Pam the credit for keeping his familiar, bald-shaved head as clean-cut as ever.

“You’ve got to be careful when your wife comes at you with a razor and a smile,” he said.

DeLong filled a conversation about ALS with jokes and lightheartedness. But he discretely hid a tear when asked what it felt like to be diagnosed with a terminal illness.

It wasn’t a shock, he said, because he’d known something was wrong.

He leaned his head down toward his hands in his lap to wipe his face with a handkerchief.

Pam filled in the blank.

“It’s the unknown that’s scary,” Pam said.

People shouldn’t fear the unknown but should instead try to talk to Dan and Pam about what’s going on, they said. Dan understands it’s not easy to ask someone about a serious illness.

“A year ago, I would have been in that position,” DeLong said. “I would be very reluctant to say anything.”

Speak up, Pam said.

“Saying anything is better than not saying anything at all.”

Share the Care

Close friends of Dan and Pam DeLong are reading “Share the Care” and getting ready to take steps the book outlines to create a support network.

Dan, 49, was diagnosed last winter with amyotrophic lateral sclerosis, a terminal, progressive neurodegenerative disease. Dan cannot control his limbs right now. Eventually the disease could affect his ability to swallow or breathe.

The book shares real-life experience on creating and organizing a group of friends to help with household chores, make meals or offer any help a family might need to care for someone with a serious illness. The authors, Cappy Capossela and Sheila Warnock kept notes as they cared for a friend with cancer. Later, Warnock created a new network when Capossela was diagnosed with and died from a brain tumor.

The book is published by Simon and Schuster, New York, and is available at Hedberg Public Library, Janesville.

The group will have to be flexible, said Jeani Damman, a Clinton Township resident who is spearheading the effort with Dan’s sister, Debbie DeLong. It’s impossible to tell how and when new aspects of the disease, commonly known as Lou Gehrig’s Disease, will affect Dan.

Dan and Pam are relieved to be making lists of ways they could use help, Pam said. But they won’t be the only people to benefit, Damman said.

“I think that a person helping someone who has this type of situation … it is maybe more rewarding to you than it is to them,” Damman said. “You don’t feel quite so helpless when you can find something to do.”

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 and scrambles communication from the brain to muscles.

n 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 lids or getting dressed.

Eventually, the weakness and paralysis spread into the body, 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 for an estimated 30,000 people affected at any time.

Men and women are affected equally.

-- Noted French neurologist Jean Martin Charcot first described the disease in detail in 1869. But ALS remains hard to diagnose, and the cause is still 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 when he was diagnosed with ALS.

“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.

Source: The ALS Association and www.lougehrig.com

For more information

The Wisconsin Chapter of the ALS Association provides information, resources and equipment loans to patients with ALS and their families. In Wisconsin, call (262) 784-5257 or click on www.alsawi.org.

Also, visit www.lougehrig.com.



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