‘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

Every vote counts: 10 tightest races in B.C.’s municipal elections

Peachland saw their election decided by just one vote

Giants fall in overtime to the Winterhawks

Langley-based G-Men earned a single-point in a 2-1 OT loss Saturday to Portland

UPDATE: Abbotsford murder victim was brother of slain gang leader

Mandeep Grewal gunned down Thursday, brother Gavin killed in North Van in 2017

VIDEO: G-Men seek revenge Saturday night in rematch at Langley Events Centre

Portland’s Winterhawks downed the Vancouver Giants 5-3 during a road trip down south.

LETTER: Retired firefighter defends union’s election involvement

In rebuttal to another letter writer’s stance on firefighter involvement in municipal politics.

Tommy Chong says cannabis legalization makes him proud to be a Canadian

Legendary marijuana advocate and comedian celebrates cultural milestone at Kelowna event

Vancouver drag queens receive royal treatment during Kootenay Pride

Vancouver drag queens discuss the importance of Pride and growing acceptance of LGBTQ community

B.C. VIEWS: Residents have had enough of catering to squatters

Media myth of homeless victims offends those who know better

B.C. Liberals’ hopes high as Nanaimo by-election approaches

Historically safe NDP seat vacated by long-time MLA Leonard Krog

Leaving B.C.’s electoral reform to a referendum is ‘ridiculous’: professor

B.C. voters getting ballots in the mail on proposal to change electoral system

Canada condemns killing of journalist in Saudi Arabia consulate in Turkey

The Saudi government claimed Jamal Khashoggi was killed in a ‘fistfight’

One year to election: Trudeau Liberals gear up for tussles on climate, premiers

Analysts say that the Liberals have reason to be ‘fairly confident’

GUEST COLUMN: B.C.’s proportional representation vote is dishonest, misleading

Veteran of 2005 Citizens’ Assembly urges rejection of new voting systems

Prank pizzas delivered to B.C. mayor on election night

The fake orders happened throughout Victoria mayor’s re-election campaign

Most Read