PARKINSON'S PATIENTS EXPERIENCE A 'MIRACLE' (Canada)

CARMELA FRAGOMENI
The Spectator
http://www.hamiltonspectator.com/main_story/123406.html

photo by the Hamilton Spectator Lynda McKenzie is featured in the Oct.
25 CBC program, Nature of Things, after receiving experimental surgery
for Parkinson's disease.

Getting out of bed in the morning is no great feat for most of us. It's
nothing short of a miracle for Lynda McKenzie, 45, of Milton. She has
had Parkinson's disease since age 34. It's the same disease affecting
actor Michael J. Fox, and she shares with Fox the unenviable distinction
of getting the disease at an unusually young age. Fox was 37 in December
when he made headlines by revealing he had Parkinson's for seven years.

McKenzie required help from her husband Al to get out of bed every
morning until she underwent a rare and experimental surgery in a Denver,
Colorado, hospital in December. She watched Barbara Walter's memorable
interview with the Canadian-born Fox on ABC's 20/20 television program
in her hospital bed.

McKenzie is one of only two Canadians in a controversial U.S. study in
which brain cells from aborted fetuses were implanted into 40
Parkinson's disease sufferers.

She must wait until a year after surgery for a test to confirm the new
cells are growing. However, such cells are growing with varying degrees
of success for others in the study. In many cases, the cells are
replacing the damaged ones causing Parkinson's, a debilitating and
incurable nerve disorder.

McKenzie was one of the last to receive the surgery for the study, so
signs of progress are gradual. Getting out of bed on her own is one of
them. Another is the ability to play two to three hours of the card game
canasta with her husband and friends.

"It's amazing. You want to see monumental things happen, but you don't,"
she says. "Then all of a sudden, you realize things. I'm gradually
cutting down on my medication" and experiencing "just a general feeling
of feeling better. And when you feel better, you feel more optimistic
about the future."

There are downsides: Watching those in her Parkinson's support group
deteriorate while she improves; not knowing if or when improvements will
stop; and experiencing an increase in the shaking and involuntary
movements because she needs constant adjustments with her medication as
the cells grow.

Then, there is the matter of the new dopamine cells coming from the
brain tissue of aborted fetuses.

Hamilton's Barbara Patterson, who runs a 1,800-member Parkinson's
discussion list on the Internet, says her members had such a heated
discussion "one can almost call it a flame war, because of the
controversy over using aborted fetuses."

Researchers and cell recipients say the abortion choice has already been
made when doctors take the fetal tissue, which would be just disposed of
otherwise.

"It's a real gift of life... It's a real miracle," says Judy Hazlett,
50, of Unionville, the other Canadian in the study. Hazlett had the
transplant almost two and a half years ago, and she describes the
improvement as a second chance in life. She went from being confined to
a wheelchair to skating and dancing again.

It's been an incredible year for McKenzie. A CBC crew filming an episode
of Nature of Things followed her around for months to record the effects
of Parkinson's and were even present in the operating room in Denver.
The show's March airing was postponed by a CBC strike.

On Oct. 25, television viewers will be able to view "Lynda's Story" in
which McKenzie is seen in her housecoat, struggling to navigate the
hallway in her home. The thought frightens and excites her, because
people will see what Parkinson's is really like, no holds barred.

McKenzie agreed to let the crew film her precisely to capture such
moments when her Parkinson's shows its true brutal nature. She doesn't
venture out when her body starts with the shakes, tremors, flailings or
freezing up. So most people will not have seen her in this state.

Her husband Al thinks it's a gutsy move.

McKenzie, however, is a woman with a mission and with a message. She
can't wait for the show to be aired. "It's going to do so much for
awareness. Parkinson's is a very isolating condition. People don't go
out because of the physical constraints, or they are afraid of others
seeing them this way."

Patterson tries to beat that isolation with her Internet discussion
list. Depression often accompanies Parkinson's.

McKenzie's close family and friends have privately seen the show, and
"everyone usually cries a little bit. Some people find it hard to watch
because they think it's sad. But I see it as perfectly optimistic."

There are other treatments for Parkinson's, including the thalamotomy
Michael J. Fox had. It's a form of surgery that destroys chemicals that
overproduce because of imbalances caused by Parkinson's. But McKenzie
says it wasn't for her because it "zaps cells" instead of growing them.

Dr. Kurt Freed, director of the University of Colorado's neurology
science department and head of the fetal transplants program, says there
are a number of Parkinson's treatments evolving. These include the use
of other cells from humans called stem cells, which can be altered and
duplicated in labs.

But he says only the fetal dopamine cells have shown to be effective so
far. "My goal is to see if we can cure Parkinson's with this strategy."

McKenzie is realistic enough to point out the surgery hasn't worked that
well for everyone -- she met all the participants at a special gathering
in July. But she says researchers found "the younger you are, the
better. And the more active you are, the better."

McKenzie is comparatively young for the disease, and is certainly
active. She is on the national and regional boards of the Parkinson
Foundation, she's an associate editor and monthly columnist for a
magazine called Parkinson's Post, and she runs a support group in her
home. She'll be at two pre-screenings of the CBC show in Toronto and
Montreal, with host David Suzuki, to answer questions. The Oct. 20
viewing in Toronto is a fundraiser for Parkinson's.

McKenzie was forced to close her busy Milton craft store in 1990, but
she took her diagnosis as another challenge in life.

"I think Michael J. Fox said it best when he said it's not a tragedy.
It's reality."


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