‘A little more hope:’ ALS patients taking anti-psychotic drug in clinical trial

New trial offers chance to treat debilitating and ultimately deadly neural disease without a cure

Cliff Barr has no illusions about how his life is going to end but he still has hope.

The 70-year-old from Okotoks, Alta., is one of 100 patients taking part in new Canada-wide clinical trial to treat ALS — a debilitating and ultimately deadly neural disease that has few treatments and no cure.

“It is a difficult and an awkward disease,” Barr said Thursday at the University of Calgary, which is running the trial.

“I found the idea of the clinical trial promising. It gives you a little more hope.”

Barr was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, in October. It causes paralysis because the brain is no longer able to communicate with the body’s muscles.

Over time, as the muscles break down, an ALS patient loses the ability to walk, talk, eat, swallow and, eventually, breathe. Experts say one in 400 Canadians will die of ALS.

Even on good days, Barr said, the disease is always there.

“The disease kind of reared its head and I’m a little weaker than normal,” said Barr, who retired 10 years ago. “This morning, I couldn’t do my pants up. I couldn’t brush my hair. I needed help doing the zipper up on this sweater.”

Dr. Lawrence Korngut from the University of Calgary’s Cumming School of Medicine is running the clinical trial over the next 1 1/2 years at nine different Canadian universities.

He said an anti-psychotic drug called pimozide slowed down the disease in zebra fish, worms and mice, as well as in humans with ALS in a limited six-week trial a couple of years ago.

Korngut said the drug doesn’t address the primary cause of the disease, which destroys nerves. But he adds that it’s now believed that there’s an electrical failure that accompanies the breakdown.

“This treats that electrical failure. We’re hoping by preserving that electrical function, even if the cable keeps breaking down, that will buy people time.

“It will prolong life.”

Korngut said people shouldn’t jump to any conclusions about how well the trial will turn out and he’s only “cautiously optimistic.”

“We’ve been through this before. We know that sometimes animals behave very differently from humans and we just have to do things properly and find out these answers.”

Barr said he has been told he is likely to have between three and five years to live. The research is a double-blind study so only half the participants will receive the drug. The rest get a placebo.

“I am a fighter. You pay your money. You take your chances,” Barr said.

“It can’t make it better. It can’t repair the muscle damage … but it can slow down the progression which would in effect help me maintain the quality of life for longer than I would have.”

Korngut said it could be years before all the results are known and he grateful for those willing to volunteer.

“ALS is a disease of weakness but these are the strongest people I know. These people fight this disease so courageously.”

Bill Graveland, The Canadian Press

Like us on Facebook and follow us on Twitter.

Just Posted

Parksville-Qualicum MLA questions minister over homeless housing project

Stilwell seeks clarification in response to community opposition

Emergency preparedness expo coming to Qualicum Beach Saturday

Experience an 8.0-magnitude earthquake in Shake Zone simulator

Parksville author reeling in reluctant readers

Jocelyn Shipley’s latest book meant to engage teens who don’t yet love to read

Qualicum Beach rain garden receives award

Green project honoured by Vancouver Island Real Estate Board awards

Ravensong Waterdancers perform well at regional meet

Mable Moran Regional Championships held in Richmond

VIDEO: Kwalikum students featured in fashion show

Event a fundraiser for dry grad event

Parksville resident interrupts break and enter

Two reported break and entries on Gaetjen Street

WATCH: Officers recognized at 10th anniversary of anti-impaired driving program

Alexa’s Team has grown from 26 members in 2008 to the current 2,400

Police searching for escaped prisoner in B.C.

Ralph Whitfield Morris, 83, is serving a life sentence for second-degree murder

B.C. set to introduce pot laws, but years of fine tuning likely: minister

Legislation regulating recreational marijuana is expected to be introduced Thursday

Arrests made after truck crashes into unmarked police cars in Nanaimo

Two men facing numerous charges after allegedly fleeing scene on the mid-island

Canadian driver uses lawn chair as driver’s seat, gets caught

Ontario police detachment caught the male driver during a traffic stop

B.C. moves to restrict pill presses in opioid battle

Minister Mike Farnworth says federal law doesn’t go far enough

VIDEO: Vets, volunteers set up vaccination station for sick bunnies

Volunteers, vets try to stop spread of lethal virus

Most Read