An Ottawa man is getting his life back, four years after he was misdiagnosed with a rare, fatal illness similar to mad cow disease.

Ken Godmere — a comedian, husband and father of two children — was told in late 2003 that he had Creutzfeld-Jacob disease. That meant he would likely be in a nursing home within a year, and would die shortly after that.

Ken Godmere said he isn't angry about his misdiagnosis.
(Alan Dean)

But just before Christmas, doctors told Godmere and his wife that he didn't appear to have the disease.

"We sat there for a few minutes staring at each other," Godmere recalled Tuesday on CBC Radio's Ottawa Morning. "And from that day, it took me about two or three weeks for it to actually start sinking in that I'm actually going to be here for weddings and grandchildren and retirement with my wife and life stuff."

Godmere, who is in his mid-40s, said he still has problems with his memory and some other mental health issues, but feels his symptoms are improving and he is gradually getting his life back.

In fact, he said he is excited to have recently gotten his driver's licence back.

"I'm adding keys to my key ring," he said.

That is the reverse of what he did after his diagnosis, when he removed the keys to his car and his new comedy club, the Institution, he added.

Despite what he and his family have gone through, Godmere said he isn't angry about his misdiagnosis.

"The experience that we went through in the original diagnosis and now the reversal have really tuned us in even more to life and all of its ups and downs," he said.

Creutzfeld-Jacob disease

Classical Creutzfeld-Jacob is a neurological disorder that usually occurs at a rate of about one in a million, and 70 per cent of people diagnosed with the disease die within six months. Symptoms include memory loss, mood swings, and being unsteady on one's feet. Later, people with the disease may have blurred vision, rigid limbs, jerky movements, and eventually loss of movement and speech. The disease is believed to be caused by an abnormal protein called a prion. The only way to diagnose the disease for sure is by examining brain tissue with a microscope, which is usually done during an autopsy. A variant of Creutzfeld-Jacob disease is linked to eating contaminated beef products from animals infected with bovine spongiform encephalopathy or mad cow disease.

Godmere was diagnosed with Creutzfeld-Jacob shortly after he opened his comedy club. At the time, he had begun losing his memory. In the middle of a conversation, he would forget who he was talking to and he panicked one day after getting lost on his drive home.

After the diagnosis, his friends staged a celebration of his life called Baldapalooza, featuring live music and stand-up comedy.

But a year after Godmere's diagnosis, when he was still not in need of a nursing home, he began to wonder about his condition.

"There was a long time in limbo," he said.

Then, last year, medical tests showed his condition wasn't getting any worse — something that didn't fit with his original diagnosis, he said.

That led a neurologist to conclude that he probably didn't have Creutzfeld-Jacob disease.