The founder of the Adewunmi Desalu Parkinson’s Foundation (ADPF), Mrs. Omorinsojo Desalu has said that Parkinson’s disorder is no longer a condition affecting only the elderly.
She said that young people under the age of 40 are increasingly being diagnosed with the disorder.
Desalu spoke during a walk organized by the ADPF in Lagos over the weekend.
Themed “Can’t Stop, Won’t Stop: Stepping Up for Parkinson’s,” the event aimed to raise awareness about Parkinson disease and support those affected by it.
The walk commenced at the ADPF Centre in Alaka Estate and concluded at Teslim Balogun Stadium in Surulere, Lagos.
Mrs. Desalu highlighted an alarming trend of younger individuals being diagnosed with Parkinson.
“In our health centre, we have four women under the age of 40. We even have a 20-year-old with Parkinson’s. It is becoming more prevalent,” she said.
She emphasised the importance of raising awareness, particularly as life expectancy in Nigeria has significantly increased.
“Life expectancy in Nigeria when I was young was, like, 42. It’s moved into the 60s now and by the special grace of God, we’re all going to live to, like, 90 years old,” she noted.
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Mrs. Desalu explained that Parkinson’s disease generally affects people over 60 and is the fastest-growing neurodegenerative disorder worldwide, second only to Alzheimer’s disease.
She speculated that the rise in cases could be linked to factors such as diet, genetically modified foods, and environmental toxins like weed killers.
She stressed that Parkinson’s is not genetic but can strike anyone randomly. “It doesn’t matter who you are; it doesn’t know your economic or social status. You can get Parkinson’s disease,” she said.
Sharing her personal experience, Mrs. Desalu recounted how her husband was diagnosed with Parkinson’s without any prior indication.
“My husband didn’t ask to get Parkinson’s, and he did. It is important to know that if you do have Parkinson’s disease, it is not an end; it is the beginning of a new journey, and that is why we are stepping along with them on that journey,” she explained.
The ADPF aims to help individuals living with Parkinson’s have a good experience despite the challenges.
The foundation provides various support services, including access to medication, low-impact gym facilities, physiotherapy, handwriting and dancing classes, and a boxing studio.
They also offer informational resources in different Nigerian languages to make knowledge about Parkinson’s more accessible.
However, Mrs. Desalu highlighted the financial challenges the foundation faces.
“We work to support patients to get the medicine they need because medicine is expensive. We are a poor country with poor people,” she explained.
Despite these challenges, the foundation continues to provide essential services to those in need.
The foundation relies heavily on donations, particularly from high-net-worth individuals, as corporate support is limited.
“A lot of corporates are saying, ‘Oh, it’s not a pandemic. It’s not malaria. It’s not sickle cell. It’s not polio.’ So a lot of the big charities are not ready to support us,” she said.
Addressing the misconception that Parkinson’s is a “big man disease,” Mrs.
Desalu noted that out of the 70 people at their center, only five are affluent.
The rest often struggle even with transport costs to the center, relying on donations from the wealthier patients.
She concluded with a plea for more support: “Please help us help these people. We depend on some high-net-worth Nigerians who support us, but we don’t have enough. So we’re still crying out for support.”
The chair of the governing board of the Adewunmi Desalu Parkinson’s Foundation (ADPF), Offong Ambah stressed the importance of early detection and effective management strategies for Parkinson’s disease.
“When you spot it early, you can start managing it through various methods,” Amber said.
“The disease manifests in different forms. Some symptoms include hand tremors, mobility issues, difficulty walking properly, balance problems, and body stiffness. Physical exercises such as boxing, tennis, and dancing help maintain body balance and alleviate stiffness.
Additionally, programs like micrography, designed to help patients maintain their handwriting abilities, play a crucial role.”
Ambah highlighted that the ADPF provides all its services free of charge.
He appealed for more support, noting, “The foundation currently relies on personal finances and support from a few individuals. We need funding to expand our activities, increase coverage, and enhance the nature of our interventions.”
Amber reiterated the critical need for awareness and support.
“It is essential to recognize that Parkinson’s can be diagnosed and managed, improving the quality of life for those affected. We need to create awareness and support current patients, balancing our resources between these two essential goals.”
About the early symptoms of Parkinson’s disorder, Executive Director of ADPF, Laura Temituoyo Ede, said it includes constipation, loss of smell among others which are often overlooked.
“If symptoms like tremors, slow movement, or freezing occur repeatedly, it’s crucial to seek medical advice,” Ede advised.
She noted that proper diagnosis can dispel the myth Parkinson’s is linked to witchcraft, particularly in less exposed communities.
Ede urged people to take preventive measures and care for themselves to mitigate the risk, even though the exact causes remain unknown. “Research is ongoing, but what we can do now is manage the disease effectively,” she said.
A woman living with the disorder, Mrs. Ifeanyi Deborah, recalled the days before Parkinson’s disease changed her life.
“I was always up and about with my business as a food vendor and farmer until one day, Parkinson’s striked,” she shared.
Unfamiliar with the disease, Deborah initially felt it was a death sentence. However, her perspective shifted after connecting with the foundation.
“What you don’t know, you don’t know. When I first had this disease, it seemed like a death sentence, but when I got in contact with the foundation, I became aware of the disease, and they offered so much help and relief. With their help, I bounced back to life,” she said.
Deborah emphasized the importance of awareness and understanding. “A lot of people think the disease is a curse and don’t believe it is a disease, but with this awareness, many will come to understand that it is not a death sentence. It is a disease that can regress you to a childlike state, and you need kind people around you to support you through the journey.”
The ADPF remains committed to raising awareness and providing essential support for those living with Parkinson’s disease, ensuring they have a better quality of life despite the challenges.