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When the pot smoke clears, the seizures lurk
By: Scott Tracey, Guelph Mercury (CN ON), 10/02/03

Bob LeDuc wants to feel angry and frustrated, but instead it is fear which has settled deep within him.

"I'm a 53-year-old man and I'm extremely terrified right now," the Guelph resident says slowly. "I'm really scared."

LeDuc suffers from temporal lobe epilepsy, irritable bowel syndrome and crippling psoriasis. Four years ago he became one of the first two dozen Canadians granted an exemption from Health Canada which allows him to legally possess and use marijuana to alleviate his symptoms.

He won the exemption the hard way, after the "horrendous" side-effects from traditional epilepsy medications repeatedly left him in the emergency department and LeDuc's doctor outlined his plight in a letter to Health Canada.

The marijuana works wonders, but comes at a steep price: LeDuc uses $40 to $50 worth of pot every day to keep himself on an even keel. That much marijuana allows him to continue making a living with his home-based guitar studio, but does not protect against the seizures that wrack his body if he goes too long without lighting up.

The concern etched on LeDuc's thin face is highlighted by the mid-morning sunlight, which streams into the cramped studio through horizontal blinds.

Financially, LeDuc can only afford to "medicate" about two-thirds of the time, so he has to pace himself and smoke when he needs to work. "At those times I don't have to function professionally I have to do without and take my chances."

It is those times between tokes, often in the dead of night, he most fears.

"I'm forced to go into the Twilight Zone," he says, shaking his head. "Night seizures are the worst."

LeDuc's epilepsy causes complex seizures which bring with them loss of awareness and impairment of memory.

About a year ago he awoke one morning with an "enormous pain" in his left shoulder - between falling asleep and waking up he had dislocated it. Seven months of physiotherapy got the shoulder back to normal, but could not explain how the injury was caused in the first place.

On other occasions he has wakened with broken blood vessels in his finger, cuts on his head and other injuries; all apparently sustained while LeDuc was in seizure and unaware of what was happening.

"I thought I had a ghost living with me," he offers, forcing a laugh. "I'd wake up in the morning and every Venetian blind in the house would be up. I didn't know what the hell was going on."

LeDuc is angry with Health Canada for failing to provide marijuana, and no wonder.

The federal department has begun providing weed to a small handful of exemptees, but only after being ordered to do so by an Ontario judge. That order is presently under appeal by Health Canada.

Time and again the feds have done their best to dash attempts by Canada's sickest residents to get their hands on the one thing they say can help them.

Those who have tried the government dope have complained it is of poor quality and the rest, like LeDuc, have no idea from one day to the next where their medicine is going to come from.

LeDuc buys his from a local dealer who he laughingly calls "my pharmacist," and is angry the government is forcing exemptees to resort to such illicit activity to get their medicine.

"The source of it is probably biker gangs," he says, his voice raising. "I don't think people realize that. To survive I have to break the law and I have to do it frequently."

While we speak, an in-progress CD of LeDuc's new compositions plays softly in the background. It has always been his dream to record his original material, and a recent chance meeting with an old friend -- who now happens to own a recording studio -- set those wheels in motion.

He perks up briefly as the conversation turns from health concerns to musical endeavours. The walls of the studio are lined with framed promotional photos of bands with which LeDuc toured the country in the 1970s -- bands with names like Quiet Foxx, Green Light and Canadian Harvest Company.

"That one did fairly well," LeDuc says of the latter, motioning to a colour photo of he and his bandmates in white disco tuxedos over bright red shirts. "One time we were tearing down (our equipment) as Burton Cummings was setting up. We were playing the same size rooms he was."

While working as a touring musician, LeDuc used marijuana recreationally.

Six years ago, his doctor asked him to begin tracking his seizures including what he was doing at the time, and eventually LeDuc realized he was not having any seizures following his illicit indulgences.

Government approval or not, he had found something that helped him enjoy a fairly normal existence.

"I like living. That's why I've chosen this medicine."

Another promotional photo on the wall brings LeDuc back to reality. It is a black and white photo with the simple inscription "Bob and Sharlene."

"That's my sister," LeDuc says, falling quiet.

In 1979, after years of pursuing their own musical careers, the siblings were preparing to work as a duet and had the promo photos done. Two weeks later Sharlene was killed when a drunk driver slammed head-on into her car.

"She never expected her time was going to come like that," LeDuc says, still looking at his sister's beautiful smile forever captured in black and white. "You just don't know."

Since I first met Bob LeDuc about a year ago I've known him to bang down his fists in anger and weep in frustration.

This time, however, he truly does appear more afraid than anything.

Looking again at his sister's photo, LeDuc pledges to finish his CD and an instructional book currently underway while he is still able.

"I'm afraid slipping into a seizure might be the last thing I ever remember," he says. "It's not like it has to be this way. That's the
aggravating part.

"Life could be sweet for me."