Parkinson's disease (PD) is caused by the progressive degeneration of the brain's substantia nigra, resulting in decreased production of the chemical neurotransmitter dopamine. Insufficient dopamine leads to an inability to control body movements effectively. A recent survey conducted by the University of Hong Kong (HKU) reveals that many Hong Kong people are aware that tremors occurring in the body are related to the disease. However, they have limited knowledge of other PD symptoms. This hinders early awareness, diagnosis and care, leading to missed opportunities to manage the risk of developing the disease at an early stage.
Funded by The Hong Kong Jockey Club Charities Trust, the "Jockey Club Movin' Care for Parkinson's Disease Project" was launched on 27 Oct 2023. The recent survey result on "Knowledge of Parkinson's disease among public" was released. Parkinson's Disease and the details of the project were also introduced through key dialogues and speeches.
Rigidity, slowness, tremors: The most recognised motor symptoms of Parkinson's disease
The Centre on Behavioral Health and the School of Nursing of HKU, one of the organizers of the project, conducted a "Knowledge of Parkinson's disease among public" survey in August and September this year, interviewing 334 individuals aged 18 and above. The results showed that among the various PD symptoms, those related to body movements were the most recognised: "tremors" (90%), "shuffling gait" (77%) and "slowness" (75%). These symptoms are collectively known as "motor symptoms" or RST (rigidity, slowness and tremors), and are the main areas of assessment in the clinical diagnosis of PD.
Non-motor symptoms may appear ten to 20 years before motor symptoms
However, some non-motor symptoms can arise ten to 20 years before the onset of RST. These are called "pre-motor symptoms". They are mostly psychological and non-motor physiological impairments, such as: 1. loss of smell; 2. depression/anxiety; 3. constipation; and 4. sleep behaviour disorders. survey revealed that, among the 334 respondents, those who had zero contact with PD patients were significantly less aware of these pre-motor symptoms than individuals with PD and their relatives or friends. Only about 20% of them were able to correctly identify these symptoms as possibly related to PD: depression or anxiety (24%), acting out dreams during sleep (17%), constipation (15%), loss of smell or taste (13%) and nightmares (9%).
Misinterpreting loss of smell as a result of having too much spicy food
Siu Hung (pseudonym), who was diagnosed with PD more than seven years ago, first noticed weakness on one side of his body a few years after he retired. He sought chiropractic and Chinese medicine treatments for a long time but in vain, until a physiotherapist suggested he might have developed PD. He then sought advice from a geriatrician and was eventually referred to a neurologist. After the diagnosis, Siu Hung realised some pre-motor symptoms had been present for over ten years.
Siu Hung recalled an incident in which he was shopping for shoes with his wife and daughter. They suddenly rushed out of the store, leaving him puzzled. They later said, "What's wrong with you? You couldn't even smell the stinky feet of the man nearby." At around the same time, he found his food was always "tasteless" and thought his taste buds could have been damaged by too much spicy food. Additionally, he frequently experienced nightmares and sleepwalking, even causing him to fall out of bed. He had not known these could be early symptoms of PD or even understood what PD was.
Dr Jojo Kwok, Assistant Professor at the HKU School of Nursing, said, "In recent years, research on Parkinson's disease has identified a number of pre-motor symptoms. Early awareness and assessment of PD will enable patients to receive treatment and care earlier, thereby preparing them for the onset of the motor symptoms. However, there is a lack of adequate awareness and knowledge about PD in the community, and most people are not familiar with the pre-motor symptoms of PD."
Over 80% of respondents with PD underestimate the risk before diagnosis
The HKU survey also found that 64% of the non-PD respondents believed that their chances of developing the disease were low, and 82% of the PD respondents had the same belief before being diagnosed. This indicates that many people underestimate their risk of developing PD and may overlook the early symptoms.
Although PD is more common among the elderly, it can still afflict younger individuals. The prevalence is approximately one in every 30 people aged 70 or above, one in every 400 people in their 60s, one in every 900 people in their 50s, and one in every 2,400 people in their 40s (Note 1). Furthermore, pre-motor symptoms may appear ten to 20 years before the onset of rigidity, slowness and tremors. There is therefore an urgent need to raise public awareness of the disease and promote risk-management.
Background of the Jockey Club Movin' Care for Parkinson's Disease Project
The Jockey Club Movin' Care for Parkinson's Disease Project (2023-2026) is a collaboration between the Centre on Behavioral Health and the School of Nursing of The University of Hong Kong, and the Hong Kong Society for Rehabilitation. Funded by The Hong Kong Jockey Club Charities Trust, the project aims to establish a comprehensive and sustainable community care service model for the Parkinson's disease-related community. It promotes early awareness of the risks of disease, early diagnosis and rehabilitation, and early care for mind-body wellness. The project also focuses on community engagement to raise awareness of Parkinson's disease in the community.
