Parkinson’s Africa and the Adewumi Desalu Parkinson’s Foundation, (ADPF) have called for greater support for people living with Parkinson’s disease.

They made the call in commemoration of the fourth annual Walking Football for Parkinson’s disease Tournament.

The programme is aimed to promote awareness of the condition and encourage the inclusion of people living with it 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 and resources.

Thomas who was represented by the organisation’s Charity Manager, Dr Ruth Ebe Emodi, said ADPF had been a longstanding partner in Nigeria and that the tournament had helped more people living with Parkinson’s to participate openly.

According to her, the number of people willing to identify openly as living with Parkinson’s has grown from fewer than 30 in the tournament’s first year to more than 100.

She said the development showed that more participants were challenging the stigma associated with the condition and becoming comfortable sharing their experiences.

“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 the experience of caring for her late husband, Adewunmi Desalu, who lived with the condition for nearly 11 years before his death in 2019, helped shape her commitment to supporting others, adding that the family did not know what was causing his symptoms for the first six years.

She said the ADPF helps with services include access to neurologists, physiotherapy, patient and caregiver support groups, a library, a gym and activities such as boxing, dance and walking football as well as provide medication for patients who cannot afford it pro bono.

“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.

Chairman of the Advisory Council of ADPF, Dr. Adeyemi Desalu, said one of the biggest challenges facing people living with Parkinson’s was the lack of awareness, which often resulted in fear, misconceptions and social stigma.

“When people are not aware, when they see it, they become frightened. You now have to deal with issues of stigma,” he said.

 

Desalu explained that people living with Parkinson’s needed supportive communities where they could meet others facing similar challenges, share experiences and participate in activities without being defined by their condition.

 

He called for greater public understanding, stressing that people experiencing symptoms associated with the disease should seek professional medical attention rather than conceal their condition.

 

“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, who said he was diagnosed around the COVID-19 period, explained that he takes medication every six hours.

 

He appealed to the government to help reduce the cost of treatment.

 

“If government can do anything for us on this drug, to subsidise it, it will be better,” Alarape said, while commending the foundation for its support.

 

Another participant, Anthony Chukwuka, said exercise helped him manage difficulties affecting his movement, speech and the use of his hands and legs. He added that people living with Parkinson’s often faced stigma because others did not understand the condition.

 

Earlier in a statement, the Communications and Community Engagement Officer of Parkinson’s Africa, Success Nwanedo, said the organisations would continue to raise awareness, support people living with Parkinson’s and their families, and strengthen partnerships to ensure that affected people were understood, supported and included in their communities.