Edison Sentinel
BY COLLEEN LUTOLF
Staff Writer

Ira and Marcia Anderson were on their annual holiday season day trip to New York City in December of 2000 when Marcia realized something was wrong with her husband.

"We would go to the city around Christmas," she said. "We would walk all over, from Penn Station through Central Park. But this time when he would walk, his foot, it just - well, I heard this slapping sound."

Ira was being treated for what he and his orthopedic doctor thought was arthritis in his right foot. His big toe was swollen and he had begun to limp. He was 53.

But on the holiday trip, Marcia noticed what doctors would later classify as "foot drop."

Foot drop prevents a person from controlling their foot at the ankle. When Ira would put his right leg forward, his right foot would slap to the ground because he would lose control of the muscles he uses to coordinate that movement. The condition is often associated with back problems, but may also indicate a much more serious illness.

They went back to the orthopedist, who recommended Ira see a neurologist.

"I thought it would turn out to be a bad back," she said. "I thought he would go see a surgeon and have surgery, and be fine."

Ira wasn't fine. A neurologist at Robert Wood Johnson University Hospital in New Brunswick had bad news. Ira had amyotrophic lateral sclerosis (ALS), which is commonly referred to as Lou Gehrig's disease.

"It's a death sentence," Marcia said as she sat in the Woodbridge home of her daughter, Abby, last Wednesday evening. She sat on the couch, between Abby, 32, and her son, Ivan, 35, and retold the story of that fateful day for the Anderson family.

"In a 3 1/2 year period, a man went from walking and talking to not being able to feed himself, not able to bathe himself; he could not turn in bed and he could not speak," Marcia said.

"I knew what it was right away because I'm a nurse. Ira knew it was bad. But he didn't know the full extent of it. There's no treatment, no cure.

"We walked out of there, and I just remember sitting in an alcove in the hospital with him and saying, 'How could this be?' " Marcia said. "Your whole life changes. All your dreams, all the things you planned, down the tubes."

What made the diagnosis even more torturous, Marcia said, was that doctors cannot be certain a patient has ALS until the disease progresses.

The ALS Association defines ALS as "a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord, resulting in muscle weakness and atrophy. It is through a clinical examination and series of diagnostic tests, often ruling out other diseases that mimic ALS, that a diagnosis can be established."

While researchers have identified the ALS gene and can test for it, there is no genetic predisposition to the disease in the Anderson family, Abby said.

"When I got the call, I could hear in his voice that something was wrong," Ivan said. "I was furious. They were telling him, 'We think it's this, but it might not be.' "

Marcia spent every night for the next six weeks on the Internet, she said, looking for other possible explanations or experimental treatments.

But the second and third opinions confirmed the initial diagnosis. Marcia suggested to Ira they take a vacation.

"We looked at each other and said, 'Let's take a trip before things get really bad,' " she said.

Marcia wanted to take Ira somewhere he always wanted to go. Ira, a World War II buff, had always wanted to go to Pearl Harbor.

"His eyes just lit up," she said. "The travel agent tried to talk us into going in October, but here it was May. With ALS, if you're going to do something you've got to do it now because you don't know how long you have."

So, in August 2001 the couple, who had been high school sweethearts and described themselves as "soul mates," boarded a plane to Hawaii. By this time, Ira was already walking with a cane.

"It was absolutely the best trip," Marcia said. "He loved it so much, he seriously asked us if he could be buried there. He wanted to move there."

Soon after the Andersons returned from Hawaii, the deterioration in Ira's leg muscles and nerves forced him to move from a cane to a walker.

It was around this time that Ira went to Town Hall to talk to Mayor Frank Pelzman.

"I had not known anything about Ira Anderson prior to him taking an unpaid job here as a consumer advocate," Pelzman said. "He started out full time. He was not under severe restrictions then. When his physical condition started deteriorating, he chose the days he felt good and we set it up so that he could work from home. But all of that is nothing compared to the man himself."

Abby Anderson describes her dad as a man who liked to talk, who liked to laugh and who loved to drive - fast.

Once Ira lost the use of his legs, Ivan, who owns Ivan's Automotive Service in Edison, outfitted his dad with an eggplant-purple van with dual exhaust, custom wheels, and pink-and-white flames on the side. The van also was also equipped with hand controls.

"He got the biggest kick out of it," Ivan said. "The grin on his face when he got it, you can't imagine."

As the disease progressed, the Andersons learned to read Ira's body for signs of which body part would next become impaired.

Fasciculations or muscle twitches in the unaffected body parts were an indication of what would next become immobile.

"You could see his muscle twitching through his shirt," Abby said. "It was almost always the next thing."

As muscle atrophy moved its way up Ira's body, he soon lost function of his arms and hands, and his ability to speak.

"My dad would talk to everyone," she said. "He talked so much, we would be at a restaurant and he'd start talking to people at the next table. I remember being mortified, thinking, 'These people can't possibly care about what he's saying,' but he'd stay friends with these people for 20 years. Of all the things that were taken from him, speech was the hardest."

Three years later, Ira could only move his left thumb, right forefinger, and his neck and his eyes, Marcia said.

"He always explained that it was like being buried alive," Abby said.

In order to communicate with Ira, the Andersons used an alphabet board.

"He would blink out the alphabet," Marcia said. "There were four rows of letters across and he'd blink when you got to which letter he wanted. He would get very excited if you guessed the word at only two letters."

Ira also had a doorbell switch next to his pillow that he would press his face against if he needed attending, Ivan said.

But through it all, Ira kept his sense of humor and his spirits up, Marcia said. It was Ira's upbeat perspective that kept the rest of the family's depression in check.

"For six months, all I could think of was the end result," Marcia said. "Then I said to myself, 'I'm wasting this time we have left together.' This man was going to die this horrible death and all I could do was feel sorry for myself. I could count on one hand the times he got depressed."

Meeting Ira Anderson changed his life, Pelzman said.

"I only knew him a short time," he said. "He was a remarkable, remarkable man. You meet a lot of people in this life, but once in a while someone comes along who you truly admire, truly inspires you. Ira's probably got to be at the top. I have so much respect for him."

Ira died on May 14, 2004.

"None of us have any regrets," Abby said. "We were able to say everything we wanted to say to each other. We were all there in bed with him, holding his hand all night. He even squeezed my hand even though he shouldn't have been able to do that."

Ira is gone now. But before he left, he advocated for ALS victims as much as possible.

He constantly sent inspirational e-mails to other ALS sufferers. He began writing poetry and kept a journal.

"From day one, every entry ended with 'I love you, Marcia,' " Marcia said. The Andersons believe Ira knew which entry would be his last. It ended with the words slightly changed: "I love you always and forever, Marcia."

The 2005 Woodbridge Walk to D'Feet ALS is celebrating its second year in Woodbridge on May 1 at Alvin P. Williams Memorial Park in Sewaren. Registration begins at 10 a.m. The walk starts at 11 a.m.

To join Anderson Walkers of Hope - Team Woodbridge, call (732) 602-6039 or e-mail walkersofhope@aol.com