Terminally-ill man happy with assisted-dying bill, but happier he won't be relying on it

John Tuckwellwould wake up in the morning, takehis dog for a run and then go to work. After, he would often visitwithfriends before taking off ona bike ride.

That was four years ago.

"Now, I manage my symptoms all day," Tuckwell's iPadsays inarobot-likevoice.

His eyes reflectaresigned sadness as he laboriously raiseshis left arm from his shoulder so that his left thumb can hoverover the touch screen.

He entersletters slowly, forming words explaining that he was tired andneededhis breathing machine.

Tuckwell was 50 years old in 2012 when he was diagnosed with a form of the terminal neurological disease amyotrophic lateral sclerosis, or ALS,called bulbar lumbus.

ALS is the same disease that Winnipegger Sue Rodriguez struggled withwhen she began advocating thedecriminalization ofdoctor-assisted dying in the early 1990s.

Bulbar lumbus paralyzes from the top down, so Tuckwell who spent his career managing communications for the Alberta governmentfirst lost the ability to speak and swallow, which meant he was unable to eat, or to taste.

But he found the silver lining.

'I think that ALS focuses one's life'

"I was lucky that my ALS began in my throat. Though the loss of my voice made work difficult, I was still able to dostuff that I loved to do," Tuckwell said through the text-to-voice program.

"Every case is unique. I think that ALS focuses one's life. It makes the important stuff all the more important."

In 2013, he travelled to Tibet with his father, who was then 83 years old.

Tuckwell motioned to a photo book on the coffee table in his sunny living room. The pages show himposing variably withhis father, a beautiful temple, a monk, a group of children.

"My legs started going shortly after Christmas and now I can barely walk," the voice said, withTuckwell nodding for emphasis.

Since then, Tuckwell said his condition has been deteriorating more rapidly.

Once an avid skier, he now struggles to bend and unbend his legs, stumbling forward slightly when he rises from sitting. Outside of his home, he uses a wheelchair.

'Diagnosis made it more urgent for me'

"I have believed for a long time that we need to offer people the choice of medically-assisted death when they are contemplating end-of-life care," Tuckwell said."My diagnosis made it more urgent for me."

Early last year, the Supreme Court of Canada struck down the ban on doctor-assisted death as it pertains to mentally competent, but terminally illpeople with unbearable symptoms.

The federal governmentwas given one year to come up with legislation to reflect that.

Tuckwell was worried that the legislation wouldn't pass,at least not in time for him.

He took his case to Alberta'sCourt of the Queen's Bench, winning a decision on May 6.

When he can no longer communicate Tuckwell will seek out a doctor to administer him a drug that will end his life.

"I feel relieved that I have the exemption, given the uncertainty around the issue," he said.

Even though the federal governmentpassed the legislation, he won't have to go through the same channels as others trying to seek access to doctor-assisted dying, which is restricted to people whose deaths must be "reasonably foreseeable."

Tuckwell was "disappointed that the federal government included the clause," even though he'd still qualify under it.

A joint statement by the health and justice ministers saidthe legislation "strikes the right balance between personal autonomy for those seeking access to medically assisted dying and protecting the vulnerable."

Tuckwell acknowledged the issue of doctor-assisted dying has been controversial,that legalizing it is a big change and "for some, it's a scary change."

He could have sought the court order allowing him to seek a doctor's help to die without ever revealing his identity, like aCalgary woman did a few months before him.

But Tuckwellsaid hewanted to help people better understand some of the reasons for doctor-assisted dying.

"I think that when people are well informed," the iPad said withTuckwell noddingalong, his breathing heavy, "there's more comfort with any issue."