‘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

TNG block roads, question gov’t on moose hunt

Chief Joe Alphonse confirmed Thursday they’ve deactivated the Raven Lake Road and the Mackin Creek Road just before the Island Lake turnoff

UBCM passes historic resolution brought forth by CCRD

If the resolution is successfully realized, it will mean groundbreaking change for local governments

Bella Coola RCMP appeal for public’s help in wake of suspicious fires

Four suspicious fires in the span of four months prompted local RCMP to bring in fire specialist

Municipal spending outpaces population growth 4-fold in B.C.: report

Canadian Federation of Independent Business has released its annual operational spending report

Series of suspicious fires prompt Bella Coola RCMP to bring in special investigator

Police investigate four fires set between June and Sept. in 4-Mile

VIDEO: Neighbours fear impact of B.C. tent city residents

Greater Victoria residents opposed to campers voice concerns at provincial campground

New evacuations ordered because of Florence flooding

Emergency managers on Friday ordered about 500 people to flee homes along the Lynches River

B.C. doctor weighs in on the kid ‘screen time’ debate

A Maple Ridge mother opens up about her children’s use of tablets, smartphones and television

B.C. councillor’s expenses being sent to the RCMP

Decision to have expenses audited and shared with RCMP taken at special meeting of council

More than 35 B.C. mayors elected without contest

No other candidates for mayor in the upcoming local election in 22 per cent of B.C. cities

Legal society poster seeks complainants against two cops on Downtown Eastside

Pivot Legal Society became aware of allegations made against the officers after a video circulated

Jury to deliberate in case of Calgary man accused of murdering woman

Curtis Healy could be convicted of first-degree murder, second-degree murder or manslaughter

House arrest for man who abused disabled B.C. woman, then blamed her

‘Groomed complainant’ and ‘violated position of trust,’ judge says

Most Read