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Parkinson’s Africa and the Adewumi Desalu Parkinson’s Foundation (ADPF) have called for greater government support, affordable medication and increased public awareness to improve the lives of people living with Parkinson’s disease in Nigeria.
The organisations made the call on Saturday, October 17, at the fourth annual Walking Football for Parkinson’s Disease Tournament in Lagos, an initiative designed to raise awareness of the condition and promote the inclusion of affected people in community activities.
Founder and Chair of the Board of Trustees of Parkinson’s Africa, Mrs. Omotola Thomas, said the organisation worked with local partners to help people living with Parkinson’s and their caregivers access support, information and other essential resources.
Thomas, who was represented at the event by the organisation’s Charity Manager, Dr. Ruth Ebe Emodi, described ADPF as a longstanding partner in Nigeria, noting that the tournament had encouraged more people living with the condition to participate in public activities and share their experiences.
According to her, the number of people willing to openly identify as living with Parkinson’s has increased from fewer than 30 in the tournament’s first year to more than 100.
She attributed the growth to increased awareness and efforts to challenge the stigma surrounding the condition, adding that participants were becoming more comfortable discussing their experiences and engaging with others.
“They understand that living with Parkinson’s disease is not a death sentence. It’s not a reason to hide away from society,” she said.
A founding trustee of ADPF, Mrs. Morin Desalu, said her experience caring for her late husband, Adewumi Desalu, who lived with the condition for nearly 11 years before his death in 2019, inspired her commitment to supporting people affected by the disease.
She explained that the family spent the first six years trying to understand the cause of his symptoms, highlighting the difficulties families could encounter when dealing with a condition they knew little about.
Desalu said the foundation provided support through access to neurologists, physiotherapy, patient and caregiver support groups, a library, a gym and physical activities, including boxing, dance and walking football.
She added that the foundation also provided medication free of charge to patients who could not afford treatment.
According to her, the cost of medication, which could range from N50,000 to N70,000 monthly, placed a considerable burden on some families, forcing them to make difficult choices between healthcare and other basic needs.
“The cost of medication, which could range from N50,000 to N70,000 a month, is beyond the reach of some families. Families are giving up food or some people are not even paying school fees just so that they can buy this medication,” she said.
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Chairman of the ADPF Advisory Council, Dr. Adeyemi Desalu, identified inadequate public awareness as one of the major challenges confronting people living with Parkinson’s disease.
He said a lack of understanding often fuelled fear, misconceptions and discrimination, making it difficult for affected people to participate fully in society.
“When people are not aware, when they see it, they become frightened. You now have to deal with issues of stigma,” he said.
Desalu stressed the importance of creating supportive communities where people living with Parkinson’s could meet others facing similar challenges, exchange experiences and engage in activities without being defined by their condition.
He urged people experiencing symptoms associated with the disease to seek professional medical attention rather than conceal their condition because of fear of discrimination.
“The first thing you do where there’s a new disease is to demystify the disease. That is the first step to removing stigma,” he said.
One of the participants, Wale Alarape, said he was diagnosed with Parkinson’s around the COVID-19 period and currently takes medication every six hours.
He appealed to the government to intervene by subsidising the cost of medication to make treatment more affordable for patients and their families.
“If government can do anything for us on this drug, to subsidise it, it will be better,” Alarape said, while commending the foundation for supporting people living with the condition.
Another participant, Anthony Chukwuka, said exercise had helped him manage difficulties affecting his movement, speech and the use of his hands and legs.
He noted that people living with Parkinson’s frequently encountered stigma because many members of the public did not understand the condition or its effects.
Earlier, in a press statement issued on Saturday, Parkinson’s Africa’s Communications and Community Engagement Officer, Success Nwanedo, said the organisations would sustain efforts to raise awareness, support affected individuals and their families, and strengthen partnerships to promote inclusion.
Nwanedo said the organisations remained committed to ensuring that people living with Parkinson’s were understood, supported and accepted within their communities.
