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Trusting Your Senses: Parkinson's Disease - Margaret Bourke-White and Joy Milne

As a photojournalist, Margaret Bourke-White was a pioneer of many things. She was the first woman photographer hired by LIFE magazine, the first female photographer to document combat zones during World War II, and the first foreign photographer to take pictures of the Soviet Union. She even earned the nickname “Maggie the Indestructible” for repeatedly taking on dangerous assignments. She photographed the release of Buchenwald concentration camp prisoners in April 1945; she photographed Mahatma Gandhi hours before his assassination; she escaped on a lifeboat after her transport was torpedoed during WWII. She was also the first female public figure to openly discuss her battle with Parkinson’s Disease (PD), the disease that put a stop to her amazing career.

In her 1959 essay for LIFE magazine, she described how seven years earlier during a photo assignment in Japan she noticed something was wrong. After sitting down for an hour, she found it difficult to get up and start walking. The first three steps were more like “grotesque staggers” but waited until her symptoms worsen before she sought help. The neurologist who examined her diagnosed her with PD and prescribed physical therapy. She was told to be active, combining exercise with daily chores like crumpling newspaper to small balls and handwashing her clothes. Though she was initially dismissive of these menial tasks, she took the advice seriously after she increasingly struggled to use her camera and typewriter. She exercised even during her photographic assignments, preferring to walk everywhere and obsessively crumpling newspaper balls and wringing towels in hotel rooms.

It was highly unusual for public figures at that time to talk about their illnesses, but Margaret was a photojournalist and she understood the power of media. Her essay not only discussed her diagnosis but also raised awareness about how the treatment of this disease was still in its infancy. She described how she had undergone an experimental surgery called chemothalamectomy, a procedure where a chemical is used to destroy the thalamus which is the part of the brain that causes the disease. The surgery was performed by the original doctor that developed this technique years prior. Under local anaesthesia, she stayed awake during the surgery to allow the surgeon to monitor her progress. She described how much hand-holding was involved – to test her hand movements – and how it was strangely comforting. The surgery went smoothly, but it only provided improvement instead of cure. Vigorous physical therapy became the focus of her life, but she remained optimistic. She ended her essay with a small celebration – she regained the ability to load film into her camera.

Margaret died in 1971 despite further treatment. By the time of her death, chemothalamectomy was no longer a common treatment for this condition. It was more favourable to use medications as they were efficient and less risky. Nowadays, medications combined with physical therapy are more commonly used to treat the majority of patients. The medications work on different targets within the brain, but they all aim to increase the level of a chemical called dopamine. Reduced levels of this chemical are caused by the loss of specific nerve cells called substantia nigra; however, what causes the cell loss is still unknown despite great research efforts. What we know is that the chemical imbalance disrupts the communication between brain cells that is responsible for movement.

Nowadays, surgery is only recommended in advanced PD cases when medications no longer work. The main type of surgery to treat the symptoms of PD is called Deep Brain Stimulation (DBS). Unlike Margaret’s surgery, DBS doesn’t destroy any part of the brain. The surgery attaches fine wires with electrodes onto the brain. These wires are connected to a pulse generator (similar to a pacemaker) under the skin around the chest or stomach area. Switching on the generator allows the electrodes to stimulate areas of the brain and repair the communication between brain cells to produce smooth and controlled movements. Combination of treatments (medications, physical therapy, and surgery) are currently the only option as there is still no cure available.

Parkinson's Disease was first described in 1817 by surgeon James Parkinson and was an intriguing subject for many famous neurologists. They initially focused on distinguishing PD from other similar diseases. Treatment and cure were very primitive in the 19th century as the biology disease was less understood. Parkinson’s Disease affects approximately 1 in 500 people, most commonly men over the age of 50. There are three main symptoms – tremor (involuntary shaking), slow movement, and muscle stiffness. Rarer symptoms include depression, anxiety, balance problems, speech problems, insomnia, memory problems, and loss of sense of smell (anosmia). Diagnosis is based on symptoms, physical examinations and medical history – no tests can conclusively tell that someone has PD.

Joy Milne is a nurse in Scotland who spent 20 years taking care of her husband, Les, who suffered from Parkinson’s Disease. More than a decade before Les was diagnosed with PD, Joy started recognising a musky, woody smell on her husband. She didn’t think much of it, not until she attended a PD patient support group and noticed everyone in the room bore the same smell. In 2015 she mentioned it to a neurobiologist who was presenting at a PD meeting she attended. The neurobiologist Tilo Kunath at Edinburgh University was initially unsure about what she meant – whether she was asking about the loss of patients’ sense of smell or maybe, a little impolite he thought, she was referring to the hygiene of the patients (PD makes daily tasks such as bathing and grooming difficult). Joy clarified that she was asking about the unique smell of PD patients and if anyone is doing anything to research that.

In a BBC article, Dr Kunath reminisced about this fascinating meeting with Joy. He suspected Joy has a heightened sense of smell and is able to distinguish more smells than a normal person. He tested her ability by giving her t-shirts that were worn by six PD patients and six non-PD controls. She was to tell him who had PD and who didn’t. She got 11 out of 12 right and was adamant that the one she got wrong, one of the non-PD controls, had Parkinson’s. Dr Kunath was very impressed by the finding and even more so when eight months later he was contacted by the twelfth person to inform him that he had been diagnosed with Parkinson’s. Joy got 12 out of 12 right after all.

Dr Kunath and Joy Milne decided to collaborate and investigate if the smell that is present in PD could be used as a diagnostic tool. Earlier this year, their collaboration was published in a scientific paper reporting that sebum, an oily secretion produced by glands in hair follicles, is the source of the smell. Sebum can be collected for testing easily by taking swabs off the skin’s surface. The study analysed how PD alters sebum production. Using a technique called mass spectrometry they picked apart the chemical components of the sebum and detected changes in 4 metabolites (products of body metabolism). These changes were exclusively found in sebum and are not known to be present at a testable amount elsewhere (blood, saliva, urine). Joy and the scientists are hopeful that this discovery can be used to develop new testing for earlier diagnoses.

Margaret Bourke-White and Joy Milne are two women experiencing PD from different corners, one as a patient and another as a carer. They made their marks on PD history using their unique senses. Margaret, through her keen eyes, understood the power of photographs to raise awareness of PD. Joy used her heightened sense of smell to help scientists research a new way to detect PD. Their stories are evidence that trusting your senses and communicating your experiences can make a huge difference.

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