New drugs and technology help ALS patients live longer and better

GILBERTSVILLE, Pa. (WPVI) -- It's been nearly a decade since the Ice Bucket Challenge went viral, raising $115 million for ALS, also known as Lou Gehrig's disease.

We can see how research and new drugs are paying off in quality of life.

Todd Kelly got his diagnosis 10 years ago at age 49, after his wife Laurie noticed something on a visit to the Naval Academy in Annapolis.

"While we were doing the tour, I was walking behind my husband, and I noticed his left foot kept slapping onto the ground," Laurie recalls.

Todd also couldn't walk quickly.

The Kellys got a diagnosis in two months, but Dr. Terry Heiman-Patterson of Temple's ALS Center of Hope says the norm is 12-14 months.

"They see an average of three doctors before they get to someone who can diagnose them," Dr. Heiman-Patterson says.

Early symptoms are very individual but include, muscle twitches in the arm, leg, shoulder, or tongue; muscle cramps; slurred and nasal speech; and difficulty chewing or swallowing.

A number of other diseases mimic ALS, including Lyme disease and myasthenia gravis, the disorder which took Jerry Blavat's life.

Although most patients live less than three years after their diagnosis, Dr. Heiman-Patterson says 20 percent go more than five years, and 10 percent get at least 10 years.

She says her job is to make ALS a livable disease, through both research and improvements in treatment.

One current focus is finding out who gets ALS.

New research shows genetics factor in far more cases than previously thought.

"We've identified over 30 genes that when damaged can drive ALS, can cause it," Dr. Heiman-Patterson says. Now scientists are also trying to identify the triggers which activate the genes.

And after 20 years with just one ALS drug, the FDA fast-tracked two others to slow down the progression.

Technology is also becoming a bigger player.

Non-invasive ventilation, which is similar to CPAP, can add a year of life.

And soon, ALS patients could control Alexa or other electronic assistants with their thoughts.

Temple's MDA/ALS Center of Hope tries to get any advances, large or small, out as fast as possible.

"You don't just see the physician, you see the mental health specialist, a case management person, you see physical therapy, occupational therapy, speech and language pathologist," Dr. Heiman-Patterson notes.

Laurie says the Center of Hope has been a valuable, accessible resource

"We'll call them, we'll text. We'll email, if we have a question, if we have a problem," she says.

She believes early, aggressive drug treatment, plus special tools and tips from the Center of Hope have slowed Todd's decline.

"We did not think we would get this far. We really did not. We did not think he'd get to see all the kids graduate from high school, let alone college. He's seen one of them get married," she says.

Dr. Heiman-Patterson says one of her major projects is to educate primary care doctors in underserved communities about the early symptoms, so cases of ALS are recognized faster.

That will enable them to get more aggressive treatment sooner.