Coping with ALS is hard, but city woman keeps going

CORNER BROOK  For Lorna Major the hardest part of living with ALS is no longer being able to totally care for herself.

But hope and the support of her family and friends, especially her husband and “sidekick” of nearly 60 years, Sam, are what gets her through it all.

ALS, amyotrophic lateral sclerosis or Lou Gehrig’s disease, is a rapidly progressive fatal neuromuscular disease that is characterized by degeneration of a select group of nerve cells and pathways in the brain and spinal cord, which leads to progressive paralysis of the muscles.

On Sunday the Majors will join others living with ALS and those devoted to finding a cure for the disease in the ALS Society of Newfoundland and Labrador’s annual Walk for ALS.

Lorna’s battle with the disease started in February 2011.

“The first thing I noticed was my inability to write,” said Lorna, 77.

So she started to do a bit of therapy on her own, thinking that would help.

But it didn’t and things kept getting worse.

Her doctor first thought she may have suffered a stroke, but a MRI ruled that out and Lorna was referred to a neurologist.

She had another MRI and an EMG (electromyography) and the neurologist came back with the diagnosis of ALS. He told the Majors that they could get a second opinion if they wanted, so they travelled to the Queen Elizabeth II in Halifax last September.

It was there that the diagnosis was confirmed.

“It was devastating, but not really a surprise,” said Lorna, her voice quivering and her eyes filling with tears.

Lorna had been up watching television late one night and a doctor was on talking about his own diagnosis of ALS. The first inkling he had that something was wrong was his inability to write.

“And that was when I thought ‘oh that’s what I got.’ But nevertheless it was still devastating when I found out it was what I did have,” said Lorna.

“And it’s hard to cope with,” she said.

“It’s debilitating to say the least. It’s also frustrating. Sometimes I get angry. Sometimes I get impatient.”

But through it all, she said “I keep on.”

Her family, which includes three children, six grandchildren and three-great-grandchildren, are a wonderful support as are her friends.

And then there’s Sam.

Lorna said he helps her a lot.

The Majors ran their own building supply company in Pasadena for years and in retirement Sam continued to work in the field at Kent.

Last May, at the age of 78 and knowing something was wrong with Lorna, he left that job.

For him Lorna’s illness has been “a change in lifestyle.”

He laughs when he says “I’ve been trying to adjust myself to household chores.”

That and the cooking were always Lorna’s thing.

“I’m the instructor now,” said Lorna.

“She keeps me on my toes,” said Sam.

After Lorna’s diagnosis the Majors immediately got involved with the ALS Society of Newfoundland and Labrador.

“And they’ve been wonderful,” said Lorna.

“I’ve been amazed with the amount of support that comes from the ALS Society,” adds Sam. “Sometimes you don’t know that they exist until you find there’s a need. And the minute we knew they existed they’ve been absolutely right at hand all the time.

“The fact that they have things available and that they can anticipate your needs that’s the big thing,” said Sam.

To give back to the society is the reason why the Majors will be at the walk.

“It’s so important not just for any particular case, but for the overall cause,” said Sam.

“For a cure,” adds Lorna.

The Corner Brook walk will take place from Bennett Hall on West Street. Registration is at 12:20 p.m. and the walk will get underway at 2 p.m.