Living strong with ALS 14 years after diagnosis

BALDWIN PARK, Calif. -- Baldwin Park resident Alice Alavarez credits daily chanting for keeping her centered after receiving the shattering diagnosis of ALS, also known as Lou Gehrig's Disease.

The 63-year-old lives each day celebrating family, her garden and her Buddhist practice. Seeing her dog is a joyous event.

"I was devastated when I found out. Two-to-five years is what they give you," Alvarez said.

That was back in 2001.

ALS kills by destroying motor neurons responsible for muscle movement. Without movement, muscles begin to weaken. In time, it can affect the lungs and patients are no longer able to breathe on their own.

The disease can progress in the space of a few years, but neurologist Dr. Nazanin Matloubi said Alvarez is an exception.

"She is the longest surviving patient I have," said Matloubi, who runs the ALS Clinic at Kaiser Permanente Medical Center in Los Angeles.

About 5 percent of patients survive up to 20 years. Experts aren't sure why, but studies show a multi-disciplinary approach to ALS can extend survival about a year and a half.

Matloubi's clinic employs a pulmonologist, respiratory therapist, physical therapist, speech therapist and nutritionist, she said. Together, they serve as a one-stop shop to ALS patients.

"We can keep them as independent as possible," Matloubi said.

Alvarez says the respiratory exercise of chanting keeps her lungs strong. She goes to the ALS Clinic once a month for an assessment. So far, she remains stable.

Nearly 13 years after her diagnosis, Alvarez walks without help and spends a lot of enjoying friends and family.

Her most important advice: celebrate each day as if it's a victory.

"I have ALS, but ALS does not have me," Alvarez said.