Parkinson’s disease patients in the country are concealing their condition from family and neighbours, including health facilities, due to entrenched stigma and cultural beliefs that link the trauma associated with the disease to witchcraft and spiritual possession.
The Executive Secretary of Anidaso Parkinson’s Disease Foundation, an NGO, Andrew Jacobs Bilson, who disclosed this, said the number of Parkinson’s disease patients in the country was far higher than publicly known, with many choosing to suffer in silence to avoid social consequences.
“There are people who have been driven out of their communities simply because they have tremors which they linked to evil spirits or possession,” he added.
Event
Mr Bilson, who is also a doctor of pharmacy, was speaking when the organisation hosted Pedal for Parkinson’s 2026, a community cycling event dedicated to the condition, at the University of Ghana Sports grounds at Legon, Accra.
The event, which was on the theme: “Moving together for hope”, coincided with the World Parkinson’s Day celebration, which is observed on April 11 every year to mark the birth anniversary of James Parkinson, the British physician who first described the condition in 1817.
Parkinson’s disease is caused by the gradual loss of dopamine-producing neurons in the brain, leading to tremors, muscle stiffness, slow movement and poor balance.
It is the fastest-growing neurological disorder globally, with more than 10 million people estimated to be living with the condition.
There is no cure, although it can be managed with medication and exercise.
Significance
Mr Bilson said the cycling event was organised because regular physical exercise had been shown to improve symptoms and quality of life for people living with the condition.
Participants rode through a route of 85 kilometres, approximately, around the university campus, led by the Ghana Cycling Federation, with Gladiators Cycling Club riding ahead of the general public.
Bicycles were provided for participants who did not have their own by the sponsor, Yanko Mobility.
The event also drew attention to the cost of managing Parkinson’s disease in the country.
Mr Bilson said the main medication used to manage the condition, Levodopa, could cost between 800 and 900 cedis per month, placing it beyond the reach of many patients and shifting the burden to caregivers.
“It does not only affect the patient through the symptoms they show.
It affects their ability to work, and the economic and emotional burden is carried by the caregiver as well.
“That is where we come in, to work with sponsors and pharmaceutical producers to subsidise medication and make it accessible,” he said.
Risk factor
Mr Bilson said research had established a link between long-term exposure to a herbicide Paraquat pesticide, thus posing a higher risk of developing Parkinson’s disease among farm workers.
“There is growing data showing a connection between pesticide use, especially Paraquat, and the incidence of the disease in farming communities,” he said.
The chemical has been banned in the UK since 2007, due to health concerns.
A founder and board member of the Gladiators Cycling Club, Kojo Graham, called for the event to be held every year.
“With better understanding, we can take part in preventive actions such as staying active. Let us make it an annual event for the benefit of everyone, especially those living with the condition,” he said.
The Ghana Cycling Federation also pledged to support future editions of the ride.
Concerns
Mr Bilson said: “There are people who have been driven out of their communities simply because they have tremors which were linked to evil spirits or possession.”
“We are here to medically debunk those misconceptions and to let people know that this is a medical condition that has treatment,” he added.
Mr Bilson further observed that misdiagnosis at the clinical level was worsening the situation, as some health workers failed to recognise the symptoms.
Mr Franklin Cudjoe, Founding President of IMANI Centre for Policy and Education, who attended the event, supported that view.
“When people go to the hospital, some of them say ‘you are drunk, go and stop drinking so that the diagnosis process will be done well.’
Mr Cudjoe, who publicly confirmed in January that he had been living with Parkinson’s disease for eight years, said his disclosure had led to an immediate response.
He said a neurologist informed him that within two days of his announcement, some 20 people reported to her facility with similar symptoms and were later diagnosed with Parkinson’s disease after previously going undetected.
“Awareness creation is important.
The disease affects everyone — from Pope John Paul II, to Muhammad Ali, and Michael J. Fox.
It does not depend on your status or what you do,” Mr Cudjoe added.
Source:
www.graphic.com.gh