The great LIFE photographer Margaret
Bourke-White was in Tokyo in 1952 when she first discovered
that, in the middle of a physically
demanding photojournalistic career, the dull pain in her left leg
was becoming something more. Rising from a meal, she found herself, for a few
steps at least, unable to walk.
As she would recount in an extraordinary
LIFE story seven years later, it turned out — after years of
misdiagnosis and confusion — that her brief stumble was a symptom of the onset
of Parkinson's disease, against which she would fight with everything she
had for nearly two
decades until her death at 67. It was, as the introduction to that
1959 article noted, the toughest battle ever faced by a woman who had seen many
— including literal battles in World War II, during which she served as the first
woman accredited to cover the combat zones as a
photojournalist.
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| LIFE photographers Alfred Eisenstaedt and Margaret Bourke-White in 1959. Alfred Eisenstaedt—The LIFE Picture Collection/Getty Images |
With photographs by her fellow LIFE photographer, some of which
are seen above, the story offered up the personal reflections of the woman who
had taken the image that appeared on the of the magazine.
When I opened some medical insurance papers one day and learned
I had Parkinson's disease, the name did not frighten me because I did not know
what in the world it was," she wrote, describing how she learned the name
that her doctors had kept from her as they prescribed physical therapy for her
unlabeled symptoms. "Then slowly a memory came back, of a description
Edward Steichen once gave at a photographers' meeting of the illness of Edward
Weston, 'dean of photographers,' who was a Parkinsonian. I remembered the break
in Steichen's voice: 'A terrible disease... you can't work because you can't
hold things... you grow stiffer each year until you are a walking prison...
there is no known cure...'"
The knowledge was, unsurprisingly, devastating to Bourke-White.
But she set her mind to learn what she could, to look for
anything she could do for relief. She learned, she wrote, that she was just one
of three quarters of a million Americans with the disease — "often they
appear to be struck down at their peak," she wrote — and that, despite
this number and the fact that the symptoms had been observed for thousands of
years, nobody knew what caused it or how to stop it. Though Bourke-White was an
extreme devotee of her exercise routine and even underwent a then-cutting-edge to "deaden permanently" part of her
brain, she knew that the operation she'd received had only treated some of her
disease and that there was no way to know how the symptoms would progress from
there
Today, more than half a century later, as Parkinson's
researchers and advocates mark 200 years since Dr. James Parkinson the disease
(then known as "shaking palsy") that would come to bear his name,
many of the questions that confronted Bourke-White remain frustratingly unresolved
for those who receive the same diagnosis she did. Treatment options, however,
have advanced significantly since Bourke-White's time — and new advances are
offering the hope for something even better.
For one thing, says Dr. Rachel Dolhun, vice president of medical
communications at the Michael J. Fox Foundation for Parkinson's Research, a
person with Parkinson's disease in the 1950s had no effective options for
medication. The most widely prescribed therapy used today, which temporarily
addresses some Parkinson's-related loss of dopamine, a movement-regulating
brain chemical — wasn't discovered until the late 1960s.
It is now also
understood in a way that it was not a few decades ago that many different brain
chemicals and parts of the body are involved in symptoms linked to Parkinson's,
not just dopamine and the brain. In addition, the operation that Bourke-White
received to basically destroy part of her brain is largely obsolete today, and
a patient who was a candidate for brain surgery now would likely instead
receive, which uses wires or electrodes to stimulate parts of the brain. (The
physical therapy that was prescribed for Bourke-White, however, is one thing
that hasn't changed: exercise remains a key way to address symptoms.)
And Dolhun says that advances in genetic science
in the last 20 years or so, by offering new insights into how the disease
works, have opened up a new range of research angles — and hope for a real
cure, rather than just a better way to address the symptoms. For example,
experts are excited by the testing of possible therapies that would target a
protein called “Right now, because of those understandings, the development pipeline
is richer than it’s ever been," she says.
Technology is also
changing what's possible for researchers and scientists. The Michael J. Fox
Foundation is running in which patients
can log on and tell researchers about what it’s like to live their experience
of Parkinson's disease, Dolhun says, and devices like wearables and smartphones
are providing new ways to track and communicate about the symptoms. For
example, whereas it used to be that a doctor might observe a patient's tremor
for 15 minutes at a time every couple of months, now an app or a watch can
allow patients to log data that gives researchers a 24/7 look at information
about those symptoms.
These new possibilities
are particularly important when it comes to Parkinson's disease, since the
experience of what it's like to live with and fight the symptoms is very
individualized. “It’s a different journey for every single person who’s on
it," says Dolhun. "That’s why we need the patient experience to
inform us so much, and that’s why it’s so important for patients to be involved
directly
That's also one reason why the openness of people like Margaret
Bourke-White mattered in 1959 and continues to matter today. There can still be
a stigma attached to telling others that you are experiencing something that
might make them see you as weak or in need of assistance. But if those who have
it keep their experiences to themselves, it's harder for researchers to make
progress toward a cure — and harder for others with the diagnosis to feel that
they're not alone
For Bourke-White, as she
described for LIFE's readers, her fight against Parkinson's was, to the fullest
extent possible, a reminder to keep working and enjoying what her body could do
for every second possible. Nowadays, she wrote in 1959 after the surgery that
helped her do that longer than would otherwise have been possible, "my
fingers are more and more often loading my cameras, changing their lenses, and
turning their winding buttons as I practice the simple blessed business of
living and working again."
"It’s not uncommon for people to feel shy about sharing
their stories," Dolhun says. "For [Bourke-White] to share her story
so publicly I think really speaks volumes. When we see people come forward with
their story, it’s not an uncommon thing for them to say, 'I really wish I had
shared it earlier.' They feel a burden lifted."
http://time.com/4794147/parkinsons-disease-life-magazine/
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