‘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

Taxing Vancouver Island

Big Read: find out which communities are paying the lowest and highest taxes on Vancouver Island

Ninth hitter cleans up for Tigers

Marty Steen steps up in season debut

T.W. Paterson column: Three great books for summertime reading

“We were broke. The whole country was broke.”

Koksilah Bridge to receive seismic upgrades

The nondescript bridge crosses the Koksilah River just north of the Cowichan Bay Road turnoff

Man brandishes axe during robbery

Mounties were able to locate the suspect within two hours of the incident

B.C. BMX kid wows GoPro with homemade video

Eight-year-old Rex Johnson wins award for inventive video

Coming up in Cowichan: From Conquering Cobble Hill to a garden tour

Conquer Cobble Hill on Saturday, June 23 Mill Bay Marine Search and… Continue reading

Lawyer fired in B.C. courtroom during trial for dangerous driving causing death

Dustin Dennis Zinter was charged following November 2015 accident near Nanaimo, B.C.

B.C. man wins job he was denied after saying he had depression

Transport Canada has been order to give Chris Hughes a high-level job and nearly $500,000

B.C. soldier shot down a century ago to be honoured

Norman Stuart Harper, of Kamloops, was killed on a bombing mission over Lahr, Germany, in 1918

Trump sends letter to Trudeau calling for increase in NATO defence spending

The letter comes as tensions between Canada and the United States have risen to a dramatic high

Horse put down, 1 person in hospital after hit by car in Lower Mainland

Accident along 132nd Avenue in Maple Ridge Friday afternoon

Electoral reform vote in B.C. includes $500,000 each for pro and con groups

A mail-in ballot referendum will take place Oct. 22 to Nov. 30, asking two questions on voting

83-year-old inmate dies at medium-security prison in Mission

Correctional Services Canada says Ralph Whitfield Morris died in custody

Most Read