WICHITA, Kan. (KWCH) Janie Carney says nothing can prepare you for the diagnosis.
“They say it's the end. Even your doctors, you can see them deflate,” says Carney.
Janie’s husband, Frank, who co-founded Pizza Hut in Wichita and helped grow it to what it is today, was diagnosed with Alzheimer’s disease about a decade ago.
Janie says she refused to just give up and started hunting for research trials. She was eventually led to Dr. Daniel Alkon, president and chief scientific officer at New York-based Neurotrope, and a drug called Bryostatin-1.
“It was actually isolated form a primitive organism called Bugula neritina," Dr. Alkon explains. "There are microbes that live on the Bugula neritina that make it."
Basically, they are microbes that live on an ocean organism. The drug was first used in cancer treatment research. When used on Alzheimer’s patients like Frank, it showed results that even researchers couldn’t believe.
“I never believed it to be possible. That's what we saw with Frank's case. We actually saw him reverse in terms of his decline,” says Dr. Alkon.
Alzheimer's clinical trial Interview Part 1
Janie says she didn’t see just small improvements. She says her husband came back to life.
“It was that day and I did not expect it. Dr. Alkon tried to explain it happens right away and I thought, 'that's impossible,' Janie says. "Everything was sparking.”
The research was overseen by a team at Ascension Via Christi under the supervision of Michael Good. He says he’s never seen anything like it.
“It did shock me. It was so shocking it took a while for it to register with me,” says Good.
Frank went from not even being able to talk or move, to a moment that Janie says she couldn’t believe.
“At Via Christi they have a lounge room and there's a pool table. Our caretaker was with us and he started to hand him the cue and asked Frank if he wanted to play pool," she says. "Frank grabbed it and leaned down and started to play pool. He wouldn't have known the day before what a pool table was."
Cognitive testing backed up what researchers and Janie were seeing.
Frank’s score on that test went from a 3 to a 12. The average person scores about a 30.
“After a two-hour infusion, he tested at a 12 which is amazing. It was so hard to believe, we retested and came up with a 12 again,” says Good.
Frank’s condition would eventually deteriorate again. But now he’s part of another step toward not just a treatment for Alzheimer’s, but a possible cure.
“The possibly this is an approach that is regenerative is real to me. The question is, can we pursue this to bring to a point to make a standard of care for patients? This is what we’re aiming for,” says Dr. Alkon.
For Janie it gave her what she was looking for more than anything else after hearing the diagnosis. It gave her hope for Frank and others who will face what is often viewed as a hopeless disease.
“This is what Frank would want. He would say, 'I did my part,'" Janie says. "He was that way about pizza. He says, 'I was only provided an opportunity to give everyone else the opportunity to change their lives.'"
Dr. Alkon and his team are working on more trials. Second-phase results released this fall did not show any more promise, but the research will continue.
“Everything we learn we are marching toward a cure,” says Good.