THE HOUSE THAT DAVE BUILT - University of Toronto Magazine

esearching her condition and sharing
information about it with some of the
more than 600 people she’s met in the
chat room in the past two years.
Gregarious by nature, McKinley keeps a
detailed record of everyone she meets. “I
love chatting with people,” she says.
So far, McKinley hasn’t experienced
the debilitating short-term memory loss
that affects most Alzheimer’s patients.
In fact, this oddity cast some doubt on
McKinley’s diagnosis. Dr. Sandra Black,
the head of neurology at Sunnybrook
Health Sciences Centre in Toronto,
tested McKinley and told her she has a
form of frontotemporal dementia, a
condition similar to Alzheimer’s. After
running additional tests, Black changed
her mind and now believes the original
diagnosis is correct. “It seems to depend
on what my brain is doing on any given
day,” shrugs McKinley, who also suffers
from poor balance, an early indication
of Alzheimer’s.
Medications have eased McKinley’s
symptoms. She takes Aricept and Ebixa
– drugs that temporarily reduce the telltale
signs of Alzheimer’s but don’t halt or
slow its progression. Since starting the
two drugs about a year-and-a-half ago,
“things have gotten better and better,”
she says.
Still, the disease has forced McKinley
to adapt. She gave up driving after a
scare while overtaking a farm tractor on
the road to Picton. (She noticed an
oncoming truck and couldn’t decide
whether to slow down or speed up to
pass.) She doesn’t enjoy dinner parties;
the loud, overlapping conversations
confuse her. McKinley uses a walker
outside the house to keep her balance.
Inside, she steps carefully, placing one
hand on the furniture, a wall, the door,
to steady herself. Despite facing daunting
challenges and a grim prognosis, she
refuses to succumb to anger or self-pity.
“This is just a new part of life, another
journey,” she says, philosophically. “You
just do things a little differently: a little
more slowly.”
Like many Alzheimer’s patients and
their caregivers, McKinley watches
closely for news of drug developments.
Dr. Peter St. George-Hyslop, director of U of T’s Centre for Research in
Neurodegenerative Diseases
She tells me about a potential new drug
that’s designed to prevent the amyloid
plaques from forming in the brain. “A
few people say that it will reverse symptoms,”
she says, hopefully. “There’s a lot
of talk in the chat room about that.”
From the moment a scientist isolates
a molecule with intriguing
therapeutic potential to the day
Health Canada approves it for public
use is a long and tortuous journey with
many potential dead-ends. The whole
process often takes a decade or longer,
and the vast majority of potential
drugs don’t make it out of the testing
phase. Earlier this year, Quebec-based
Neurochem announced plans to market
Alzhemed, its leading Alzheimer’s
candidate drug, as a nutraceutical (a
dietary supplement) rather than a drug
after testing in patients failed to show
conclusive positive results.
Patients and caregivers grasp at any
hint of hopeful news, which is why St.
George-Hyslop is careful to be realistic
about CRND’s efforts in the area of
potential therapies. Yes, pharmaceutical
companies are testing some interesting
possibilities as a result of the
centre’s research, but no, there’s nothing
that actually slows the disease in
Alzheimer’s patients – yet. He prefers
to steer attention to the centre’s inves-
Dr. Paul Fraser studies proteins in the
body that cause Alzheimer’s
tigations into the biology of how the
disease progresses.
Since St. George-Hyslop and his
team identified mutations in the presenilin
genes as a cause of Alzheimer’s,
some of the centre’s researchers have
been seeking to understand exactly what
the presenilin genes do and how mutations
in these genes lead to the disease.
As is often the case with scientific investigation,
things are significantly more
complex than they first appear.
Paul Fraser, one of CRND’s principal
researchers, has worked closely with St.
George-Hyslop since arriving at the centre
in 1991. Fraser earned a PhD in biochemistry
at U of T and did post-doctoral
work in neurobiology at Harvard
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