Technology is also changing what’s possible for researchers and scientists. “Right now, because of those understandings, the development pipeline is richer than it’s ever been,” she said. For example, experts are excited by the testing of possible therapies that would target a protein called alpha-synuclein. (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.)Īnd Dolhun said 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. 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 deep brain stimulation, which uses wires or electrodes to stimulate parts of the brain. 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. The most widely prescribed therapy used today-levodopa, which temporarily addresses some Parkinson’s-related loss of dopamine, a movement-regulating brain chemical-wasn’t discovered until the late 1960s. Fox Foundation for Parkinson’s Research, a person with Parkinson’s disease in the 1950s had no effective options for medication. Rachel Dolhun, vice president of medical communications at the Michael J. Treatment options, however, have advanced significantly since Bourke-White’s time and new advances are offering the hope for something even better.įor one thing, says Dr. Today, more than half a century later, many of the questions that confronted Bourke-White remain frustratingly unresolved for those who receive the same diagnosis she did. Though Bourke-White was an extreme devotee of her exercise routine and even underwent a then-cutting-edge brain surgery 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. 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. The knowledge was, unsurprisingly, devastating to Bourke-White.īut she set her mind to learn what she could, to look for anything she could do for relief. 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…'” “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. “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. With photographs by her fellow LIFE photographer Alfred Eisenstaedt, some of which are seen here, the story offered up the personal reflections of the woman who had taken the image that appeared on the first-ever issue of the magazine. 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. Rising from a meal, she found herself, for a few steps at least, unable to walk.Īs 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. 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. Written By: Lily Rothman, Liz Ronk, Julia Lull
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