'I have a couple of good years': Charlottetown man adjusts to life with ALS

It started with mysterious voice problems. One day, Danny Connolly would have trouble speaking, his speech slurring and becoming difficult to understand.

But then it would all go away, he said, "and I thought that was weird."

"Next were spasms in the arms, and a weakness in this hand and swallowing issues."

A Google search showed the symptoms fit the description for amyotrophiclateral sclerosis (ALS).

The final diagnosis came in August 2016, when the Charlottetown mansaw a neurologist in Halifax.

'I never expected to be in this situation'

Connolly said he knew very little about the disease back then.

His mom had once worked for a man who had it about 10 years ago. More recently,it had made the rounds on social mediawith the ice bucket challenge.

• Ice Bucket Challenge money benefitting Islanders with ALS

"That was about the first time I ever heard anything about it," he said.

"I never expected to be in this situation but who does?"

Neurodegenerative disease

ALS Canada describes the illness as a neurodegenerative disease that slowly degenerates certain cells in the brain and the spinal cord needed to keep muscles moving.

In Canada, about 2,500 to 3,000 people live with ALS. About 1,000 people die from it annually, while another 1,000 people are newly diagnosed.

The life span after diagnosis is two to five years on average.

ALS usually begins with twitching and weakness in an arm or leg. Eventually, the muscles used to move, speak, eat and breathe are affected, until the body's respiratory system fails and the person relies on a feeding tube for nutrition.

The senses, including hearing, sight, smell, taste, and touch are not affected by ALS.

'That time is coming'

Connolly said he prefers it being called Lou Gehrig's disease after the New York Yankees slugger who famously announced decades ago to a filled stadium that he had been diagnosed with ALS.

Lou Gehrig's has a better ring to it, he said.

• 100 Women Who Care raise over $15K for ALS Society of P.E.I.

He's not at the point yet where he can't move or look after himself.

"But that time is coming," he said.

Hard on the family

The progression for the illness is slow, so he can take it day-by-day.

Connolly's oldest daughter, Kara, 17, is helping out, he said. ButMolly-Rose who is8, doesn't quite understand yet what is happening to her dad.

"We are just kind of easing into that one," he said, then paused. He gets emotional when he talks about his kids.

Slow changes

The hardest adjustment is the speech impairment.

"I've been talking at this speed for 52 years," he said.

Slowing down is difficult and half-way through the day, he gets tired.

The other problem is the muscles giving up on theright side of his body.

Time to retire

He can still "MacGyver" his way through the day, but on Friday this week he's officially retiring.

A carpenter, Connolly has continued his work in the past months, though he asked people to pay him "by the job, not by the hour."

"I can do everything normal right now it just takes longer periods of time," he said.

His sister and a group of friends are now organizing a benefit party for Connolly and his daughters tocollectmoney to help with the financial challenges of living with the disease. They've also created afundraising pagefor the family.

The benefit party will be held at the Murphy Community Center on Richmond Street in Charlottetown on Feb. 25. The event will include a silent auction and musical performance.

Growing more patient

The progression of the illness is slow.

Connolly said he was never a patient man but the disease forced him to become one.

It also changed the way he looks at life. He wants to go on some trips now, and spend time with his family.

When he goes for a drive now and he sees something "I really see it now," he said.

"I'm just saying to myself, I had a good one, I have a couple of good years, a lovely family," he said.

"This is it so deal with it, basically."

"Everybody should take it like that."

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