KINGMAN Kathy Sherfey sat in a recliner with her legs up Wednesday when a reporter arrived at her home and was greeted by Ranley Sherfey, her husband of 30 years.
She smiled, but had difficulty in shaking hands with the visitor. That is not uncommon for someone afflicted with amyotrophic lateral sclerosis (ALS), commonly called "Lou Gehrig's disease."
Gehrig, a member of baseball's Hall of Fame, was the first celebrity to draw attention to ALS. He had to retire after being diagnosed with it in 1939.
ALS is a progressive neurogenerative disease which attacks nerve cells in the brain and spinal cord, according to information on the Web site of the Amyotrophic Lateral Sclerosis Association. It results in degeneration of motor neurons and as they die the brain loses its ability to regulate muscle movement.
Victims of ALS normally live 3-5 years, although many live 10 years or more. However, it is always fatal, according to Beth Mohan, a registered nurse and northern Arizona patient services coordinator for the Arizona chapter of the ALSA.
"Some cancers can be cured or go into remission, whereas with ALS there is no cure," Mohan said.
"Trying to maintain hope is difficult, so we treat the symptoms to give the patient a quality of life. We get them all the adaptive equipment they need so they can remain at home with their families, which is one of our goals."
May is ALS Awareness Month. Mohan said she knows of two cases of the disease in Kingman and two in Lake Havasu City.
Kathy Sherfey's first symptom appeared seven years ago when she lost the ability to raise the big toe on her right foot.
"The way ALS works is that the more you use the muscles the more the disease destroys the nerves to them," Ranley Sherfey said. "Kathy is right-handed and it moved up her right leg.
"As she supplemented activity by using the left side more and more it moved over there and destroyed nerves."
Kathy had to quite her teaching job at Kingman Junior High School in 1998. She had taught there for eight years.
The Sherfeys were on an emotional roller coaster the first two years when doctors at Barrows Neurological Institute in Phoenix could not definitively say Kathy had ALS. They initially felt it was multiple sclerosis, then hedged on that diagnosis, Ranley said.
There is no test that leads to a definitive diagnosis of ALS, so every other possibility must be considered in arriving at a diagnosis. Doctors began using the phrase "progressive muscular atrophy" before finally declaring Kathy's affliction as ALS seven months ago.
"It was a relief in a way," Ranley said. "We had gone for years trying to find out what it is and what we can do about it.
"Everybody we'd talked with left a big question mark until a doctor finally said there is nothing about the disease that would indicate it's not ALS."
ALS most commonly takes two forms sporadic (90-95 percent of all cases) and familial (5-10 percent of all cases). As nobody in Kathy Sherfey's family has ALS, she appears to have the sporadic type.
"Just one person in 100,000 on average gets ALS," Kathy said.
That is of little solace to the family that includes daughter Marian, 8, and son John, 5. Ranley and Kathy also have three grown daughters, two living in California and the other in Virginia.
Ranley is the primary caregiver for Kathy.
"Kathy is totally dependent on a caregiver for everything," he said. "She can't brush her teeth, comb her hair, shoo away a bug that may crawl on her, walk or hold up her body while sitting.
"Her breathing is just over 30 percent of capacity."
Having oxygen tanks or a concentrator will not help. Kathy cannot expel air, so there is danger of carbon dioxide building up in her body.
Kathy's father served in the United States Navy and a high percentage of service personnel and their families seem to contract ALS, Ranley said. However, he is uncertain of any clinical connection.
Local businesses have made promises of help.
In June, Wal-Mart will give Kathy a new laptop computer, Ranley said. It not only will more easily help her connect with the Internet, but will improve her speech.
"The Home Depot has offered supplies to help renovate the bathroom to get Kathy in and out of it more easily," said Dixie Benyo, a registered nurse and friend of the family.
Benyo said passive exercise to relieve joint pain is about all Kathy can do at present. She feels pain as anyone else, but her speech is difficult to understand for someone meeting her for the first time.
Ranley was asked about his greatest hope.
"That Kathy should get well," he said.
"We're devout Christians and believe the Lord will heal her by whatever means, medical or otherwise. But when you get in this spot no doctor offers hope."
"They become rather blunt and shut the door, saying to get your legal situation in order. It could be six months to a year, but eventually she'll get pneumonia and that's it."
Kathy asks little for herself, only wanting people to be aware of ALS, Benyo said.
In the meantime, Kathy strives to keep her spirits up.
"You never know what may happen," she said.
Anyone wishing more information on ALS may go to the Web site at www.alsaz.org or call Mohan at (928) 523-6954.