Parkinson’s Disease is no longer ‘just an old man’s disease’, says patients

“My symptoms (Parkinson’s Disease) started when I was 29 and I remember it took me almost six years to get a diagnosis even though I lived in the US at the time, and had access to health care, medical insurance, etc, said Omotola Thomas, chair, board of trustees, Parkinson’s Africa. “The last doctor who I saw in South Africa said my symptoms were as though I have Parkinson’s symptoms, but we generally don’t see this illness in your demographic. You’re a young black female, and usually we see Parkinson’s, older white male, so I think that was part of why it quite a long time for me to get diagnosed at the age of 35.”

Thomas shared her experience to create the awareness that Parkinson’s disease is no longer limited to old age. “I want you to also know that there are four young Nigerian women with Parkinson’s and we’re here to dispel the myths and the misconception that Parkinson’s disease is an old white man diesease,” she said.

“For my coping mechanism, I listen to inspirational audio. Also, the most important thing for me, in terms of my coping mechanism is doing precisely what I’m doing now, which is trying to give back trying to give back to the community, trying to help people because in doing that, I am able to take my focus away from the challenges, that is Parkinson’s disease, and channel that into helping other people,” she said

Rachel Agwu, Operations Coordinator, Parkinson’s Africa first noticed her symptoms when she was 24 years old and in her final year. She was called so many names. She got diagnosed at 33 years old. “So how do I cope, I take it one day at a time. It all starts from the mind, if you can say you can do it, you can but if you tell yourself you can’t, there’s nothing you can do,” Agwu said.

Empress Priscillia Omoijade, business woman, a 40 years old single mom, shared her symptoms started when she was 38. She went to several hospitals, they never saw it as Parkinson’s till she was diagnosed a year, after when she was 39.

“I felt really ashamed among people; sometimes when I go to public place, they will tell me I’m too slow, why am I shaking like an old person; and I felt discouraged until I met Mrs. Omotola and Rachel and I joined ADPF,” she said. “I became relieved and now I’m proud to say I have a family, nobody is shaming me anymore and I am no longer ashamed.. How do I encourage myself, I see myself as a goal-getter. I’m not the cause of this, life happened to me; so I take it one day at a time. Anywhere, you see a Parkinson’s patient, embrace them and do the little you can for them.”

Parkinson’s disease, first described by Dr. James Parkinson in 1817, is a chronic brain disorder that gradually worsens over time. The disease mainly affects the part of the brain responsible for controlling movement, but it can also impact other important functions like learning, behavior, sleep, and memory.

In Africa, Parkinson’s disease is the second most common neurological disorder and is expected to increase in the coming years.

One way to help people with Parkinson’s is to raise awareness of the disease. This is what the S.E.E. Parkinson’s campaign is doing. The campaign provides educational resources, including a booklet, to help people learn about Parkinson’s and how to cope with it.

Another way to help people with Parkinson’s is to support events that raise awareness of the disease. The Walking Football Parkinson’s Cup is a great example of such an event. It was organised by Parkinson’s Africa and Adewunmi Desalu Parkinson’s Foundation (ADPF), sponsored by Vitol Foundation and supported by Waka Football Nigeria.

The tournament was created to raise awareness about Parkinson’s disease, highlight the challenges of living with the disease and display medication, exercise and nutrition as effective tools for pushing back its symptoms.

Speaking on the pitch, Tania Park, executive director, Parkinson’s Africa, with background in sport – football; using it as a development tool to help vulnerable people– said “I wanted to find a way to find a safe exercise for people with Parkinson’s to keep healthy in the simplest possible way, but also use it to bridge the gap and use it as an educational and awareness tool.”

“This is why we’ve partnered up with Adeumi Desalu Parkinson’s Foundation. And thanks to Vitol Foundation, we’ve been able to really make this a reality where we’ve developed a program which uses walking football to of raise awareness and education. If you give people book, they may or may not read it, especially in difficult circumstances, but if you show someone a visual representation of for Parkinson’s diseases, they will remember it,” she said.

Omotola Thomas, chair, board of trustees, Parkinson’s Africa, playing football

Persons with Parkinson’s diesease playing footballChibuzor Ifeanyi, Vitol Representative in Nigeria, said “We chose to sponsor this awareness because It is a worthy cause and that’s why we identified with it. We chose to pull our full weight behind it and from what we can see, we’re very happy it’s been a success. And I think we are rewarded by the outcome and we encourage other corporates organizations to follow suit.”

Furthermore, Omorinsojo Desalu, Chair, board of trustees, ADPF, shared her experience on what it feels like working and with persons diagnosed with Parkinson’s disease.

“We started the Parkinson’s foundation to celebrate the life of my husband, who lived with Parkinson’s between nine and 10 years and has since passed,” she said. “We decided that journey was not in vain and it was important the family shares what we went through, what he went through and then use that to encourage people living with Parkinson’s in Nigeria, and with Parkinson’s Africa, be able to share that story in Africa as well.”

“Our foundation is one year old; this foundation opened on April 19 last year and we thank God that we’ve been able to impact the lives of people living with Parkinson’s to this point. It was challenging but emotionally rewarding for me because we’ve seen changes. We have people who couldn’t walk when they started coming to the center, who now work. We can see that we’re doing something and as we say, the journey of 1000 miles begins with one step and we’re glad we took that one step.

“As we become an aging population, and there are more and more older people in Nigeria, we will begin to see more and more of Parkinson’s disease in our community. We’re counting on the support of everybody and anybody listening to help us to ask us what they can do and join us. It doesn’t have to be money; it could be your time, it could be just helping one person is more than enough.”

“This is the fastest growing neurodegenerative disease after Alzheimer’s and we need to be alert, we need to be awake, the public health system needs to sit up because we are going to grow old and some of us will not be as well, according to Aderemi Desalu, chair, advisory board, ADPF.

“Parkinson’s Disease is a very new disease, not new in its reality but new its awareness, people are not aware of it. It is very similar in his trajectory to HIV, where we started not knowing about it, even though it was with us.

“The issue of Parkinson’s as a very serious one in the sense that it is with us, but people are not aware of it; And people are putting it under so many other headings when it should in the right heading and headings range from supernatural headings to misdiagnosis headings. What we want to really achieve is a situation where; one, we are all aware of it, we recognise it and we can deal with it early. Three, that there are indeed places that can give relief, that may give support that can help people with Parkinson’s,” Aderemi said.

Similarly, he said “Exercise is probably one of the most important thing a Parkinson’s can do. Any exercise that gets you moving, gets your heart rates up is is good exercise, so there is Walking, cycling, swimming, boxing, dancing; anything that gets your joints, your arms, your legs, your body moving and your heart rate up is good exercise and you know some people with Parkinson’s have mobility issues; they can’t walk properly. Chair based exercises are good for them.”