Never Giving Up: But for area ALS patients, services are limited
May 31, 2005
Melissa McEver
© 2005 The Monitor and Freedom Interactive Newspapers of Texas, Inc.

Patricia Perkins spends as much time as possible hand-sewing quilts because she knows that eventually her hands will falter, along with the rest of her body.

Soon, she will be unable to speak, breathe without a ventilator or even move, although her mind will still function normally. Such is the grim, inescapable prognosis of amyotrophic lateral sclerosis, or ALS.

For now, though, Perkins, who lives in Mission, can gesture emphatically with her hands and smile brightly, although she does so from a wheelchair. She keeps busy so she does not think about the future too much, she said.

"I want to do as much as I can do while I can do it," Perkins, 66, said. "I thank God (the ALS) didn’t start in my hands."

ALS, better known as Lou Gehrig’s disease, is a rare, progressive neuromuscular illness that strikes six to eight people per 100,000, experts say. Based on that figure, the disease likely is significantly underdiagnosed in the Rio Grande Valley, said Kristin Bonilla, patient services coordinator for the South Texas chapter of the ALS Association.

"We’re working with about 10 people in the Valley, which is very much under the number we’d anticipate working with," she said.

Because the early stages are hard to detect, people afflicted with ALS can go for months or years without an accurate diagnosis, she said.

"This disease can mirror a lot of other diseases and problems like carpal tunnel, diabetic neuropathy," she said.

Dr. Miguel Gutierrez, a McAllen neurologist who works with ALS patients, agreed that many general practitioners do not recognize ALS at first.

"They look at them and don’t know what is going on," Gutierrez said. "When they go to medical school, they have neurology classes. You cover the usual things like headaches, seizures. They’re not trained to say, ‘OK, this is ALS’ … or if you’re taught about it, you might not see a case of it for 15 years."

Early symptoms of the disease can include everything from slurred speech to hand weakness to twitching. Later in the disease, the patient usually becomes paralyzed, gradually losing the ability to speak or breathe easily.

The illness does not discriminate — it can hit someone at age 20 or 90, although the average age of onset is 58, experts said. Only 10 percent of cases have a clearly genetic cause.

"There’s no rhyme or reason in why it happens," Bonilla said.

On average, ALS patients live for two to five years, although some can live up to 10, the Muscular Dystrophy Association says.

Except for a monthly free clinic in Harlingen sponsored by MDA that treats all forms of muscular dystrophy, services for ALS patients in the Valley are limited. The nearest ALS-specific clinics are in San Antonio.

Many patients, like Perkins, travel to San Antonio or even Dallas for medical care.

"We’re fortunate to have the money to do that," she said. "But a lot of people can’t afford to go."

The ALS Association’s South Texas chapter, based in San Antonio, brings some services to the Valley. These include an equipment loan program that offers the use of wheelchairs, hospital beds, respiratory aids and communication devices, a quarterly support group for patients and assistance with travel expenses when visiting clinics. The association would like to do more, but the South Texas chapter serves 93 counties and has limited funds, Bonilla said.

The ALS clinics in San Antonio offer respiratory, physical and occupational therapy, counseling, neurology, speech therapy, pastoral care and more, said Dr. Carlayne Jackson, a neurologist who works at the two clinics. Because ALS is rare, there probably are not enough patients in the area to warrant bringing a similar clinic to the Valley, she said.

"I don’t know what the reality would be to get a clinic or research program down there," Jackson said.

The MDA free clinic, held monthly at Valley Baptist Medical Center-Harlingen, sees an average of two ALS patients at each session, said Marilyn Eggeling, health care service coordinator for the Central Texas chapter of the MDA, which serves the Valley. A physician sees patients, helps them find needed equipment and therapists, and makes referrals.

Jackson said the Valley could use more neurologists to work with ALS patients, in addition to the services already available.

However, none of these treatments lengthens an ALS patient’s life expectancy, although the San Antonio ALS clinics are researching the effects of an antibiotic and dietary supplement on the disease, hoping they can slow its progress.

Perkins, who was diagnosed six months ago, is hopeful that she has a long time yet. She and her daughter, Michelle Varnado, wear red ALS Association bracelets that say "Never Give Up," as if to emphasize that fact.

And Perkins keeps quilting furiously. She plans to hold a raffle for one of her quilts, with the proceeds benefiting the association.

Varnado and Perkins both said they want the community to become more aware of ALS and the need for more research funding.

"If the education isn’t there and the awareness isn’t there, the support isn’t there," Varnado said.