World Parkinson Congress Highlights 2019

This June, the 5th World Parkinson Congress (WPC) took place in Kyoto, Japan. The Congress unites the global Parkinson’s community to inspire hope and share knowledge, self-management tools, and research findings.

Our staff in attendance were thrilled to see so many members of the BC Parkinson’s community in Kyoto. The Society proudly funded scholarships for 10 attendees, including people with Parkinson’s, carepartners, and healthcare professionals, and we were happy to meet a number of attendees who travelled from BC independently.

Travel to a foreign country was certainly part of the attraction of this year’s WPC, but what stood out most to our delegates was the passion and positivity at the event. The sheer volume of people working to study Parkinson’s disease (PD) and improve patient outcomes leads us to believe in a brighter future.

A few session highlights from this year’s World Parkinson Congress include:

• Dr. Shinya Yamanaka, 2012 Nobel Laureate in Physiology Medicine, discussed human trials in cell reprogramming. Recent studies have shown that stem cells may be injected into the brain to replace dopamine-producing neurons. Drs. Jun and Masayo Takahashi have performed studies on monkey models, in which subjects showed significant improvements lasting two years following human stem cell injection.
• Angelo Antonini introduced a new definition of advanced PD, determined by consensus among leading Parkinson’s experts. A person is said to have advanced PD if they are taking at least five doses of levodopa per day, with two hours or more of “off” periods, and one hour or more of troublesome dyskinesia. This is referred to as the “Five-Two-One” definition.
• Jeffrey Kordower presented on the connection between Parkinson’s and gut health. Given that clinical and pathological evidence support the notion that PD may begin in the intestinal wall, and that symptoms of intestinal disease may precede PD diagnosis by over a decade, it may be possible to one day use colonic tissue biopsy to predict the onset of PD. Research suggests that treating inflammatory bowel disease may also lower the risk of developing PD.

Soaring with Hope for PD

Traditionally, in Japan, the crane is a symbol of peace and hope. It is believed that if one folds 1,000 cranes, their wish will come true.

Famously, a young girl by the name of Sadako Sasaki, decided to fold cranes hoping that her wish to live would be granted. As an infant, Sadako was exposed to radiation from the atomic bomb that was dropped on Hiroshima, and later diagnosed with leukemia. Unfortunately, she was unable to finish the project before she passed, but her classmates continued to fold cranes in her honour.

At WPC, this tradition was continued to help inspire hope for the international Parkinson’s community.

Three individuals, Naomi, Clara, and Amy, were brought together by Young Onset Parkinson’s disease (YOPD), and a love for juicy pork dumplings. They decided to undertake a project called “Soaring with Hope for PD”, where they coordinated volunteers from around the world to help fold over 16,000 origami cranes, each carrying a message of hope. Individuals from 39 countries participated in the project. These cranes were then strung from traditional Asian umbrellas, and placed on display at the Congress.

Following the Congress, the cranes were presented to a number of people and organizations. Parkinson Society BC was fortunate to have been selected as a recipient. To carry forth this message of hope and continue to raise awareness, the umbrella will be on display at our upcoming provincial conference, Moving Forward, Together.

Topic Highlight: Wearable Devices and Applications for Parkinson’s Disease

In recent years, there has been an increased interest in the use of wearable devices for Parkinson’s disease. The primary reason to have people wear sensors is to capture data, and the reasons for capturing this data are multi-fold:

• To improve disease diagnosis – PD is diagnosed mainly through clinical examination. When symptoms are subtle, healthcare professionals may not be able to firmly diagnose PD. Some wearable technology research efforts are focused on developing an algorithm to help make a clearer diagnosis of PD by tracking the patient’s symptoms and daily functioning.
• To improve symptom monitoring – Patients tend to see their doctors for relatively brief periods, and currently, doctors adjust medication doses based on anecdotal patient and carepartner reports. More information about how a patient is actually doing at home, in the form of reliable information gleaned from a wearable sensor, may allow for more accurate and timely medication adjustments.
• To encourage increased activity or track compliance with an exercise program – This is the rationale behind personal fitness tracking devices, which are used by the general population, and can be effective in the PD population as well.
• To improve clinical trial data – Currently, the way clinical trials determine whether a medication is helpful is by performing rating scales at various points in the trial, such as the United Parkinson’s Disease Rating Scale (UPDRS). This is a very crude way of determining medication effectiveness, since the scale shows imperfect inter-rater reliability (i.e. different examiners can come up with a different UPDRS score for the same patient). In addition, patients tend to perform well for their physician when they may not be doing as well at home. Trials sometimes ask patients to keep diaries at home to gather more information; however, like other methods of self-reporting, these can also be inaccurate. Supplementing the current rating scales and patient diaries with data gathered from wearable sensors could help determine whether a clinical trial medication is effective. This effort explains why pharmaceutical companies are very interested in wearables, and some are working to develop their own devices.

Wearable sensors can be placed on the wrist, ankle, or trunk, and data captured by these sensors can detail the patient’s typical daily activities and symptoms. Sometimes, the sensors are too complicated or large to be used at home, and the patient needs to come to a neurophysiology lab for the data collection. However, recent technological advancements mean that wearable sensors are not only getting smaller and lighter, but also becoming increasingly more accessible, affordable, and user-friendly.

Many everyday devices are already equipped with sensors that can track patient data. For example, typing data can be collected by installing software on a patient’s computer, with the patient continuing to interact with the keyboard as they normally would. Typing data can include how long a patient spends touching a key, and how long it takes between touching one key and the next. These details can provide information on the patient’s dexterity, for example. Similarly, most smartphones and wearable fitness trackers (e.g. pedometers, smart watches) come equipped with accelerometers and gyroscopes, which track movement and orientation, vibration, and tilt. The values generated by these sensors can detail the patient’s movements, like walking, running, biking, and climbing stairs.

One system, which is already cleared by the US Food and Drug Administration (FDA), and is available on the market for monitoring of PD patients between visits to the doctor’s office, is known as the Personal KinetiGraph® (PKG®). A patient wears this watch-like sensor for 6-10 days in anticipation of an office visit. The sensor collects data which is then interpreted through the PKG® algorithms to measure bradykinesia and dyskinesia throughout the time period that the watch is worn. The PKG® also has the ability to alert a patient to take a medication dose, and allows the patient to record whether the dose was taken. After the data is collected, the patient mails the watch in, and the data is downloaded and sent to the patient’s physician to inform their next appointment. This data can then complement what the patient and carepartner say about their medication responses at home. A poster at WPC demonstrated that when PKG® is in use, it often influences and informs the decision to change medications.

Also presented at WPC was a smartphone-based system developed by the pharmaceutical company Roche. The data gleaned from their algorithm directly correlated with traditional scales and testing performed at movement disorder clinics, and in clinical trials.

In addition to wearable technologies that track patient symptoms, new devices are being developed to improve symptoms, too. In 2017, a Microsoft watch prototype was revealed that uses vibrating motors to dampen tremor. The device is known as Emma Watch, named after Emma Lawton, a British graphic designer with Young Onset PD. Lawton was the inspiration and first user of the invention, which dramatically improved her writing. This product is still under development, and not yet available on the market. Another similar technology is the Liftware adaptive spoon. These vibrating and selfleveling spoons are designed to stabilize a tremoring hand, making it easier bring food to the mouth. These spoons are specifically meant to help tremors that occur with action, which can be a symptom of Parkinson’s, although less common than resting tremors.

Submitted by Andrew Davenport, PSBC Board Chair

This content was published in the Fall 2019 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.