Tuesday October 26, 1999

Subject of controversy

Last fall, Lynda McKenzie was fighting paralysis. But her Parkinson's symptoms have improved after fetal cells were injected into her brain.

At this time last year, Lynda McKenzie found it a challenge to get off the couch. Her husband had to help her go to bed at night and get up in the morning.

Now, she can get up out of bed in the morning on her own.

Last December, Ms. McKenzie, who was diagnosed with Parkinson's disease 13 years ago, went to the United States for a controversial surgical procedure in which fetal cells were injected into her brain.

It is a procedure that will fall under new reproductive technology legislation that Health Minister Allan Rock is expected to unveil before year's end. The new law would require that scientists be licensed to research the use of fetal tissue in treating Parkinson's.

Ms. McKenzie acknowledges that there are ethical issues surrounding the procedure, in which medical researchers inject fetal brain cells into the brain of a Parkinson's sufferer in order to stimulate production of dopamine, the chemical in the brain responsible for motor control.

But she explains that mothers who undergo abortions have signed consent forms to release the fetal tissue for medical research.

"If I was involved in something like that, which has got to be a sad occasion, if something good could come of it, that would be something I would opt for," explained Ms. McKenzie, who has four children (two of her own and her second husband's two).

"Instead of (the fetus) being in a garbage can, I'd much rather have somebody able to live a reasonable life after having it."

The 47-year-old visual artist and writer from Milton, Ont., was in Ottawa yesterday to address the annual general meeting of the Parkinson Foundation of Canada about her struggle with the disease and the improvements she has experienced since she had the surgical transplant.

Tomorrow at 9 p.m., CBC-TV's The Nature of Things with David Suzuki will air an episode about Ms. McKenzie called Lynda's Story, which profiles her three-year-long journey to receiving fetal-tissue transplants in the U.S. and some relief from the symptoms associated with Parkinson's, an incurable and degenerative neurological disorder that increasingly restricts bodily over time.

About 100,000 Canadians have the disease. At least 10 per cent are those under the age of 40, including Ms. McKenzie and 38-year-old Canadian-born actor, Michael J. Fox, who has had Parkinson's since he was 30.

In some cases, the disease manifests itself in the tremor witnessed in the shaking hands of Pope John Paul II and former heavyweight boxing champion Muhammad Ali. For Ms. McKenzie, Parkinson's has had a paralyzing effect.

"You see something on the table you want to pick up. Your brain says, 'I want to pick that up,' but the message doesn't go anywhere and your hand just sits in your lap. It doesn't do anything," explained Ms. McKenzie.

"It gets worse. At first, you can get that cup, but it takes longer. Then you get to a state where you can be totally rigid and not be able to move at all."

That state is about where Ms. McKenzie was last autumn.

Since Parkinson's is incurable, she had to consider ways to manage the symptoms.

Drugs available to treat the disease, used over time, can produce side effects "where you move so much, you have no control," said Ms. McKenzie, who explained that it made her become a "whirling dervish" or like "someone controlled by a mad puppeteer."

"It can last for up to a couple of hours and happen two or three times a day," she said. "You can go from being totally motionless to moving all the time."

Parkinson's is also unpredictable, explained Ms. McKenzie, who had to close her craft shop in Milton, a community near Toronto.

"You can be fine one minute and think, 'I'm going to do groceries' and get to the grocery store, freeze up and be there at the mercy of anybody -- hoping that you see somebody you know who will take you home."

As well, the cost of the medication is akin to "having a mortgage payment." Some of the newer pills are priced as much as $3 apiece and need to be taken as often as 14 times a day.

Three years ago, Ms. McKenzie joined a group of 40 Parkinson's patients involved in an experimental brain-surgery study at the University of Colorado Health Sciences Center in Denver. Half the group received transplants of fetal tissue into their brains; the other half did not, though all 40 people underwent surgery.

None of the participants knew to which group they belonged until a year afterward.

"The results weren't as miraculous as they had hoped," said Ms. McKenzie. "For everyone who received tissue, it grew. But the results were more positive for people under 60. For those over 60, the improvements have been slower -- but there have been improvements."

In 1996, Ms. McKenzie had surgery without the tissue transplant. Last December, she finally had fetal cells inserted into her brain and has experienced some improvements with her own condition.

Still, the post-surgical prognosis remains uncertain.

"Whatever destroyed the cells in the first place, there is a possibility that it could destroy the new ones."


Christopher Guly
The Ottawa Citizen
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janet paterson
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