Health & Medicine

Frankfort man recognized for fight against ALS

These days, many of Bob Banks' words are written.

The 61-year-old Frankfort man's speech is deteriorating, so he often uses a cell phone to type out messages to his wife. He spends much of his time e-mailing old friends.

Banks, who until last year repaired and installed phones at the University of Kentucky, has amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig's disease.

He was diagnosed in March 2008 with an illness that an ALS specialist at UK says affects only five to eight people in 100,000.

It started in his left hand in 2004. Banks, who is left-handed, had trouble signing his name or holding a bar of soap.

The illness made its way down the left side of his body, and the Harley-Davidson enthusiast who once participated in charity rides started walking with a limp.

"When he retired, he was having trouble with his speech," Banks' wife, La Noma, said. "But I didn't notice it for a while."

Now Banks uses an electric wheelchair, and he has vowed to fight the disease for the rest of his life while supporting others who are struggling with the same fate.

"I know all too well what is waiting down the road for me," Banks wrote in a letter to a reporter. "And it's certainly not how I'd hoped retirement would be."

The ALS Association's Kentucky chapter recognized Banks and his wife last month for their involvement in the group and their fund-raising efforts. The couple plans to travel to Washington, D.C., on Sunday, during ALS Awareness Month, to help the association rally lawmakers for funding and support to find a cure for ALS.

"We like to show the face of ALS," said Patricia Peak, patient-services coordinator for the association. "We like for the people who are our senators and representatives to see patients who have ALS and how it affects them and their families."

One victory for the association came last year, when the Department of Veterans Affairs announced that ALS patients with 90 days or more of continuous active military service were eligible for assistance because the illness occurs in veterans at rates higher than in the general population.

In September 2008, the VA said 20,000 to 30,000 people in its system had been diagnosed with ALS.

The VA based its decision to provide assistance to veterans with ALS on a November 2006 report by the National Academy of Sciences' Institute of Medicine, which studied ties between veterans and ALS.

Bob Banks served in the Army from 1968 to 1971. The VA helped the Banks family get a handicap-accessible van and bought a DynaVox communication device for him.

Soon he will use the high-tech device to type messages with his weak but functioning right hand or point to the letters using his eyes. The device will speak for him.

Dr. Edward J. Kasarskis, a neurologist at UK, said it is not clear why the illness is relatively common among veterans. He said some cases of ALS also appear to be genetic, with 5 to 10 percent of people with the illness reporting that they have a relative who has it.

In his letter, Bob Banks describes an unforgiving disease that spares the brain but destroys the body.

"It's a horrible feeling to watch your body disintegrate and you are unable to do anything about it," he wrote.

Kasarskis said there is a drug that can help slow down the illness. But the average life expectancy for an ALS patient is three to five years.

"The difficulty with this disease is that people continue to get worse," Kasarskis said.

ALS patients often die because the muscles that control breathing weaken.

The illness is difficult to diagnose. Kasarskis said there isn't a blood test or imaging study, such as an MRI, that can detect ALS.

"It's still a pretty rare disease," Kasarskis said. "Your average busy family practitioner might not see but one or two during their entire career."

Many people, similar to the Bankses, mistake the early signs for a stroke, but ALS is much more subtle, initially causing people to lose their balance or have trouble with buttons, Kasarskis said.

Doctors were stumped for years after Banks started having trouble with his hand.

La Noma Banks, whom Bob jokingly refers to as "the warden," said her husband's condition "went down a lot" after Christmas 2007. And soon they might have to hire a caregiver through the VA, something Bob Banks doesn't want.

But La Noma Banks worries that her husband will get injured on his way into the bathroom; his electric wheelchair won't fit into the room, and he has fallen there before as she has struggled to help him.

"It's a very private, very personal thing," La Noma Banks said of her husband's reasons for not wanting the caregiver. She said that as his condition worsens, she fears leaving him home alone even for a short time.

"It's a very terrible disease," La Noma Banks said. "And it's hard for the person and the family."

Bob Banks' young grandson doesn't understand.

"You can imagine how hurtful it is when I try to talk to my 3-year-old grandson and he covers his ears with his hands because he doesn't like my voice," Bob Banks wrote.

Although Bob Banks can't go fishing or ride his motorcycle, a 44-year hobby, he says he can still be thankful. He says that he's thankful for the ALS chapter and that their support to ALS patients is "priceless." "I have a feeling that God is going to help us all soon, and as I say many times in e-mails, 'just waitin' on a miracle.'"