‘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

VIDEO: École Puntledge Park Elementary celebrates winter solstice

The event was a part of the school’s Indigenous education curriculum

Valley company reaching out to women near and far

Three Comox Valley business women know firsthand what good menstrual products can… Continue reading

B.C. storm totals $37M in insured damages

The December storm wreaked havoc on B.C.’s south coast

Miniature horses visit Glacier View residents

Glacier View Lodge residents had a couple of special visitors on Wednesday… Continue reading

Annual women’s march in Courtenay Saturday

The Women’s March was a worldwide protest on Jan. 21, 2017, to… Continue reading

B.C. opioid crisis to get same world-renowned treatment approach as HIV/AIDS

A program that focuses on treatment as prevention will roll out Jan. 17

BC Hydro scammers bilked customers out of nearly $45,000 in 2018

Nearly 2,000 people reported scams to the utility, as they continue to be more common

Overworked and understaffed: More than 300 vacancies in Vancouver Island nursing

Tentative deal with province includes ‘working short premium’ to encourage hiring

Olympian snowboarder Max Parrot diagnosed with Hodgkin’s lymphoma

Each year in Canada, approximately 900 people are diagnosed with Hodgkin’s lymphoma

‘Prince of Pot’ Marc Emery accused of sexual assault, harassment

Emery denied the allegations, but a Toronto woman says she is not the only one speaking out

Vancouver Island photographer makes National Geographic’s 2018 elite

Rare double honour for Marston from the 36 best Your Shots out of nearly 19,000 photos

Ex-Liberal candidate in Burnaby, B.C., says volunteer wrote controversial post

Karen Wang dropped out following online post singling out NDP Leader Jagmeet Singh’s ethnicity

Asteroids are smacking Earth twice as often as before

The team counted 29 craters that were no older than 290 million years

Canada’s arrest of Huawei exec an act of ‘backstabbing,’ Chinese ambassador says

China has called Canada’s arrest of Huawei chief financial officer Meng Wanzhou ‘politically motivated’

Most Read