Listen to this articleBy Chinonso Kenneth
LAGOS, NIGERIA: * Emerald Johnson, 41, was utterly confused and devastated after she was diagnosed with Parkinson’s Disease (PD). Before her diagnosis, Emerald, a medical laboratory technician in Lagos had no prior knowledge of PD.
“I felt I was the only one with this medical condition [because] when I was diagnosed, I didn’t know anybody as young as me who had Parkinson’s or someone who even had Parkinson’s, I only watched them on [television],” Emerald said.
By the time she was diagnosed in March 2022, Emerald was already feeling stiffness around her right limbs, battling insomnia and overwhelmed with anxiety. This led her into an internet search for solutions and support.
Parkinson’s Disease (PD) is a neurodegenerative disease which affects muscle control, balance, and movement. As the disease progresses, the symptoms expand to include psychological issues like depression and memory loss.
Mr. *Musa Uduak, 65, a marketer by profession was also experiencing speech and movement impairment before he was diagnosed in early 2024, “I find it difficult to dress up and even to express myself,” he said.
In Nigeria, approximately over five million Nigerians who are above 65 years are at risk of developing Parkinson’s Disease. While men are more susceptible to PD than women, Dr Julius Babatunde Adetunji, a consultant neurologist at Bingham University noted that early onset Parkinson’s is not uncommon among young people.
Emerald’s internet search for PD support led her to the social media pages of the Adewunmi Desalu Parkinson’s Foundation (ADPF), and through their support, Emerald was able to access free and personalised physiotherapy care, psychological support, and membership to the ADPF impact gym.
“With the physiotherapy sessions and everything, I no longer feel that stiffness again, I can now move my body very well, the insomnia is more manageable , I can do some exercises that I never knew before, and they made me to know some other things that I ought to be doing to help myself,” Emerald told The SolutionsPaper.
The Adewunmi Desalu Parkinson’s Foundation was established in April 2022 to replicate the success that Dr Adewunmi Desalu was able to achieve as a PD warrior for the last 10 years of his life through personalised care and access to fitness equipment, which helped slow down the progression of the disease.
“When [Dr Adewunmi Desalu] passed, the family had all the equipment [he used], and that was where the idea for a legacy foundation came from,knowing fully well there is no such organisation in Nigeria,” John Akinola, senior programs manager at ADPF said.
The Mohammed Ali Boxing Studio and Low Impact Gym
Dr Julius Babatunde Adetunji, a consultant neurologist at Bingham University, added that physical exercises that involve every muscle in the body are particularly effective in helping PD warriors accelerate dopamine and beat stiffness.
ADPF is predicated on this fact and leverages personalised care treatment plans, a low impact gym and a diagnosis referral arrangement with some hospitals that have a neurology department, such as Lagos University Teaching Hospital (LUTH), to ensure fast and bureaucracy free diagnosis and support to about 80 PD warriors In Lagos state.
“Once we’ve identified people who are presenting symptoms of Parkinson’s, we refer them to where they can get accurate diagnosis and we collaborate with LUTH and other hospitals around, so we have a two-way referral system where we refer people to them [for proper diagnosis] and they refer back to us for rehabilitative care,” Akinola said.
After the diagnosis, ADPF’s in-house physiotherapist crafts a person-centred rehabilitative care plan involving an exercise routine and medication timetable to help increase dopamine and slow the progression of the disease.
Thrice a week; Mondays, Tuesdays, and Thursdays, ADPF’s low impact gym and Mohammed Ali boxing studio is open to registered PD warriors. At the low impact gym, members, guided by their personalised rehabilitative care plan and a fitness coach, use sports and exercise to increase dopamine.
“It is called low Impact because it’s not a gym where you see heavy metals and we push until you build [big] muscles. The low Impact gym is basically to strengthen the muscles, increase balance, and improve coordination,” Akinola noted
Equipped with a stationary elliptical trainer, a treadmill, a stationary exercise pedal bike and lightweight dumbbells, the low Impact gym helps ADPF members improve motoneuron coordination for hand and feet movement.
ADPF also runs a no-contact boxing program where members use shadow boxing and punching a stationary object to improve footwork, overall balance and agility. The program also incorporates exercise routines from Rock Steady Boxing; an evidence-based exercise curriculum designed to impact PD symptoms and slow its progression.
“Since I’ve been boxing, the coach calls me his best [boxer]. There is this thing we have to box, we box it while walking around. That’s my best part, it helps me to stretch my arms and keep my memory intact [because] I have to focus on what I’m boxing and the angle,” Emerald told The SolutionsPaper.
*Sunday Jackson, 60, who was diagnosed in 2017 but became a member of ADPF in 2023 said the exercises and physiotherapy sessions have improved his motor coordination and decreased the symptoms.
“I enjoy the jabs; one, two, three, four, left and right jabs, and uppercut, we do that as a routine exercise. It helps me expand my balance and makes me feel confident when I walk among people,” Jackson added.
Every six months, ADPF conducts an assessment of all members using the Unified Parkinson’s Disease Rating Scale (UPDRS) in conjunction with the Hoehn and Yahr scale; a globally utilised clinical rating scale that employs a five-point scale to evaluate overall PD severity and motor function ranging from 0 (no signs of PD) to 5 (most severe, wheelchair bound, or bedridden unless aided).
According to Akinola, data from ADPF biannual evaluations show that 90 percent of members who adhere to their ADPF rehabilitative care plan and medications from the neurologist experience a slower progression of PD.
“We have people who couldn’t even swing their hands because of stiffness who can now swing their hands to a certain degree because of the low impact gym and the exercises. People in stage 3 are able to maintain that stage, people in stage 2.5 are able to come down to 2,” Akinola said.
“We can only slow down the progression, not cure it”
Akinola further reiterated that there is no cure yet for the neurodegenerative disease, thus all their intervention will at best slow down the progression. “Parkinson’s is a neurodegenerative disease, it degenerates with time, it doesn’t have a cure, we can only slow down the progression,” Akinola added.
Because theirs is the only centre in Lagos, members who do not live close by find it difficult to come to the centre considering they are already dealing with significant disruption to their movement. According to Akinola, this reinforces an already strong stigma culture.
“One of our members mentioned that whenever she is taking money from her purse to pay the bus conductor, people will be like, mama why are you doing mama go slow? Why are you so slow?”
This stigma also means that some people attribute symptoms of PD to old age and witchcraft, believing Parkinson’s to be a ‘white man’s disease’ even when faced with evidence to the contrary. “Most of the reactions we’ve been receiving are, “ahh so this thing happens to people in Nigeria or to black people ‘I used to think it’s witchcraft, or it’s that people are possessed,” Akinola said.
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Akinola noted that despite these drawbacks, ADPF is committed to supporting more PD warriors in and around Lagos state via other programs, such as the ‘overcoming micrographia group’ where members engage in handwriting exercises to boost hand movement, and the ‘walking football’ tournament to boost muscles in the body.
Supported with research from the National Library of Medicine which suggests that bicycling improves motor performance and the overall quality-of-life for PD warriors, Dr Adetunji added that the addition of a bicycle riding program would be beneficial to ADPF members. “The main goal is to make them [PD warriors] as independent as possible, and bicycle riding has been found to be very effective because it involves virtually all the muscles in the body,” Dr Adetunji said.
Credits
Names with *asterisks are pseudonyms and changed to protect the identities of sources.
Editing: Folakemi Ajala
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This story was published in partnership with Nigeria Health Watch through the Solutions Journalism Network, a nonprofit organisation dedicated to rigorous and compelling reporting about responses to social problems. _________________________________________________
The SolutionsPaper is a a multimedia outlet leveraging solutions and constructive journalism to spur civic action and participation in development issues across Africa.