‘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

Small tax increase highlight of 2018 Village budget

Council’s big project for 2018 is downtown revitalization

VIDEO: Property evacuated after mudslide closes Highway 3A

A mudslide has closed Highway 3A between Castlegar and Nelson just north of the Brilliant Dam.

New Nakusp vet settles into business

Robinson ready to provide care to community’s pets

Passing gardening tips on to the next generations

New program to connect seniors and youth to the earth

Village council briefs: pot, wifi and campground feeds

Other council business from last week’s meeting

VIDEO: Work is play for this B.C. avalanche rescue dog

CARDA certified Joss’s Job is to save lives — but to her, it’s all a game

How to keep local news visible in your Facebook feed

Facebook has changed the news feed to emphasize personal connections. You might see less news.

Black Press Media acquires two new Alaska newspapers

New Media Investment Group to acquire the Akron (OH) Beacon Journal while Black Press Media takes on daily newspapers in Juneau and Kenai Alaska

Thieves target B.C. firefighters helping flood victims

The service has been helping with sandbagging efforts, as rural Oliver battles flooding

B.C. towns rank in top honeymoon destination worldwide

Vernon, Kaslo, Sunshine Coast and the Island hit Expedia.ca’s list of top 18 honeymoon destinations

Olympic gold now official for B.C. weightlifter

Christine Girard’s bronze medal from 2012 Olympics upgraded to gold, IOC announces

Men arrested at Starbucks say they feared for their lives

Rashon Nelson and Donte Robinson were arrested in a Philadelphia Starbucks, becoming viral video

Did a Canadian shoot down the Red Baron? A century later, debate hasn’t quit

Om April 21, 1918 two Canadians in their canvas-covered Sopwith Camel biplanes engaged the enemy

VIDEO: Canadian teen lands invite to Royal wedding

Prince Harry and Meghan Markle have invited Faith Dickinson, founder of Cuddles for Cancer

Most Read