OMOTOLA OKUPE-THOMAS

Most women at the age of 29 have just started entering the realm of adulthood and starting their own nuclear family. There are usually newly married, blessed with a kid or two and living happily with their spouse behind a white picket fence. They are not usually worried about illnesses that plague the elderly and as such, are living their lives to the fullest with so many opportunities ahead of them to explore.

Omotola Thomas (née Okupe), was one of such women. She was an Engineer and lived with her husband and two kids in South Africa. At 29, she felt tremors on her hands but like most young people, shrugged it off as stress of work. But the tremors remained and got worse over time. Many years and several tests later, she finally got her diagnosis - and it was what she suspected, she had Parkinson’s disease. Surprising to many as it was viewed as an ailment of the elderly, in this interview, Omotola opens our eyes to dispel that myth. She has been living with this disease for over 11 years and has become a strong advocate in creating awareness about it with her Parkinson’s Africa, an NGO she runs. She has made various strides in this journey which she shares with STYLE. ISIOMA USIADE reports...

What was your first symptom of Parkinson’s disease and why did you ignore it at the time?

It was a twitch in the forefinger on my right hand and it started somewhere between 2009 and 2010. I was 29 at the time and, in addition to being a wife and mother to two young children, I was also working as an engineer in a fast-paced environment – I assumed the twitch was stress related and that I simply needed to take it easy.

When did your symptoms become more noticeable and how long did it take to get the correct diagnosis?

It took a number of months for the twitch to progress into noticeable hand tremors. In the beginning, whenever I noticed the tremors, I could mentally make it stop. Gradually, I lost that ability and, over time, started to notice additional symptoms – muscle weakness and stiffness, primarily in my hands.

I went to see several doctors, underwent several scans, had blood drawn numerous times, and got tested for many different ailments – all of which came back negative. Finally, almost six years later, after being tested for what seemed like “everything under the sun”, a South African doctor (I was living in South Africa at the time) looked at me and said, “I think you’ve got Parkinson’s disease”. I was 35 years old.

You suspected from the beginning what your ailment might be? Who sprung to mind that gave you reason to suspect this?

Perhaps due to heightened anxiety (anxiety is a symptom of Parkinson’s), one of the first things I thought of when I started experiencing hand tremors was Parkinson’s disease. The late Muhammed Ali (may his soul rest in peace) came to mind and I remembered watching the video of him carrying the torch at the 1996 Atlanta Olympics; I remembered his hands were shaking quite visibly; I remembered marveling at his courage; and, of course, I also remembered he had Parkinson’s disease; I worried that I had it, too.

For years, I kept this fear to myself – I was too afraid that speaking about Parkinson’s disease would make it become my reality. Little did I know that it already was.

In the sixth year of your symptoms, you said you came across a quote before your diagnosis was confirmed. What was the quote and what myriad of emotions went through your mind when you finally got your diagnosis?

It was the night before I got diagnosed - June 16, 2016. From the results of the scan I had done earlier in the day, it seemed clear to me that I was going to be diagnosed with PD. I didn’t want to dwell on negativity, so I searched online for “faith”. My life was about to change, and I needed to find something that would counter the despair that was threatening to surround me. And I did. I found a quote that is attributed to man called Patrick Overton, and it read:

“When you walk to the edge of all the light that you have and take that first step into the darkness of the unknown; faith is knowing that one of two things will happen. There will be something solid to stand upon, or you will be taught to fly”.

In that moment, somehow, I found enough grace to shift my perspective about the impending diagnosis - I certainly did not welcome the thought of a Parkinson’s disease diagnosis, but I was no longer afraid of it. I felt at peace, and that peace remained with me as I sat calmly across the doctor the next day as he confirmed what I already knew; and it remains with me till this day, five years later.

Of course, the presence of peace does not necessarily mean the absence of trouble.

Let me be clear, my journey with Parkinson’s has been very challenging and difficult; but through it, I have come to understand that adversity also comes with; opportunities to grow, to fly, to soar, opportunities to lift, encourage, and inspire others, and to find purpose.

For years, I kept this fear to myself – I was too afraid that speaking about Parkinson’s disease would make it become my reality. Little did I know that it already was.

How did your immediate family react to the news and how long did it take you to tell them?

My husband was calm - we both were, actually. We were both grateful to have finally come to the end of the 5+ year journey of searching for a diagnosis. My children were too young to understand the implications, but we talked to them about it without going into too many details. As for my parents, I knew they would be upset, so I waited a few weeks before telling them. They were distraught.

What made you decide to become an advocate for PD?

I knew that if I kept quiet about my diagnosis, it would affect me adversely. For me, silence equaled subjugation, and speaking out equaled empowerment. I chose empowerment.

What are the key things required to make it easier to live with PD?

I think one of the most important factors is a good support system. Parkinson’s is a multifaceted illness that impacts several functions of the body and, in turn, several aspects (mental, emotional, and physical) of a person’s life; this makes it very difficult to handle alone. I have been extremely blessed in this regard as my family (immediate and extended) and friends, remain incredibly supportive.

As with any illness, it is important to adhere to a healthy lifestyle, but regular exercise is particularly important in Parkinson’s. Studies have shown that even 2.5 hours of moderate exercise per week is beneficial in reducing symptoms and possibly slowing down the progression of the disease.

Medication is also important, particularly as the disease progresses and performing daily tasks (like putting on clothes and handling objects) become more difficult.

Other things I have found helpful are maintaining a positive mindset, minimizing exposure to stress, staying informed, and connecting with others who are going through the same journey.

What can people do to better support their loved ones living with PD?

The motor symptoms of Parkinson’s (tremors, rigidity, slowed movement, and imbalance), though challenging, are easier to provide support for because they are visible. However, for as many symptoms as can be seen in a person with Parkinson’s(PWP), there are many more “invisible” (non-motor)symptoms that cannot be seen. Loved ones should endeavor to educate themselves on these symptoms, some of which include anxiety, depression, cognitive and memory issues, insomnia, apathy and pain. While these symptoms should not serve as an excuse for bad behavior in a PWP, it is important for loved ones to be aware that these non-motor symptoms are difficult to deal with and could affect a PWP’s temperament and mood.

Other ways loved ones could provide support are by encouraging the PWP to take their medications regularly, exercise consistently and stay socially connected.

What about those that don’t have access to proper care? How can life be made easier for them?

That’s a really difficult question because, ideally, everyone dealing with Parkinson’s should be seen by a neurologist; but of course, this is not a reality for many Africans. However, providing social and emotional support, and strongly encouraging exercise is beneficial to any PWP, whether or not they have access to care.

For Nigerians, it might be helpful to note that each state has at least one or two government tertiary hospitals; and most of these hospitals have a neurologist. Additional information and support for Africans impacted by PD can be found at www. parkinsonsafrica.com.

This ailment is perceived to be more common with the elderly. How prevalent is it with younger people?

Most people who get diagnosed with Parkinson’s are 60 or above. Young-onset Parkinson’s disease (YOPD) generally refers to those diagnosed under the age of 50. We have not conducted nearly enough studies in Nigeria, or even Africa, to understand the prevalence of YOPD, but according to the Parkinson’s Foundation, it is estimated that between two to 10% of the Parkinson’s population in the US are YOPD.

Why is there a lot of stigma attached to PD?

It appears to me that, as a society, we tend to stigmatize things that deviate from what we perceive to be normal or standard. In Parkinson’s, we are dealing with symptoms that produce movements that are not only abnormal and visible, but also uncontrollable. To add to this mystification, what causes Parkinson’s, or how to cure it, is not clearly understood.

It is not too difficult to fathom how people can attach stigma to an illness like this; but it is the job of those of us who are traversing this path to raise awareness of the condition across Africa and to educate the public on what Parkinson’s is and is not.

In what ways are you creating awareness for this cause?

I recently established a nonprofit organization called Parkinson’s Africa, among other things, to raise awareness and improve the knowledge of Parkinson’s disease in Africa. We are doing this through video campaigns and the creation of culturally relevant print and digital educational materials. Our first awareness and fundraising campaign – Seven Reasons - was launched in July 2020, and its primary objective was to dispel the notion that Parkinson’s does not really exist in Africa and to reduce stigma.

The video featured several Africans diagnosed with, affected by, or treating/supporting patients with Parkinson’s disease. The campaign raised over $11,000 which was used to purchase medication for low-income African patients.

We have also created an “Introduction to Parkinson’s” video series to educate those affected by Parkinson’s, their families, and the general public on the basics of Parkinson’s disease. These videos are currently available in English, Yoruba, Swahili, Igbo, French, Pidgin English, and Luganda, and can be accessed through the www.parkinsonsafrica.com website or directly on our YouTube page. We are working on additional translations and aim to cover as many languages as possible.

Parkinson’s Africa’s other goals are supporting research and research participation; and improving PD healthcare access, particularly for low-income patients.

When was the moment you decided to address the issues related to PD healthcare access?

When I realized that even though I had access to the medical care I needed, I still struggled a lot, I couldn’t begin to imagine what life looked like for those who have this disease but are not able to afford their basic medication. That realization made me want to act.

What has inspired and touched you the most since you commenced on this project?

Three things, actually.

The first is the strength and the resilience of those that have decided to be a part of the Parkinson’s

Africa community and raise more awareness of this illness across Africa. I honestly thought stigma would discourage many from speaking to me about their illness, participating in support groups, or agreeing to be part of Parkinson’s research. This has not been my experience and I am deeply humbled by the candor and courage these individuals have displayed.

The second is the dedication of the different Parkinson’s support group leaders across Africa. Many of these individuals operate under difficult circumstances and with a very limited budget. In spite of that, they still go out of their way to serve their Parkinson’s community, volunteering their time, resources, and finances.

The third is the benevolence of people. I am deeply grateful to every single person that has contributed towards Parkinson’s Africa. I am particularly touched by generosity of the Farah Foundation, a private family trust that funded our first project – the purchase of free Parkinson’s medication for over 100 low-income Nigerian Parkinson’s patients. I am grateful for their decision to trust me and the opportunity I was given to facilitate such an impactful program.

The program is currently running at Lagos University Teaching Hospital (LUTH) under the supervision of

Prof. Njideka Okubadejo – a woman whom I have great respect and admiration for.

How can people support Parkinson’s Africa?

To support Parkinson’s Africa, please visit www. parkinsonsafrica.com to donate, partner with us, sign up to our newsletter, or contact us. Alternatively, I could be reached via email: omotola@parkinsonsafrica.com.

Empowering Africans affected by Parkinson’s is the heartbeat of Parkinson’s Africa – it is why we exist and is embodied by our three primary goals of raising the levels of understanding of PD, supporting research

(and participation in research), and improving access to healthcare.

To be able to do this in an effective, consistent, and sustainable manner, we need (and would greatly appreciate) funding and partnerships from/with the public, private and voluntary sectors.

It is not too difficult to fathom how people can attach stigma to an illness like this; but it is the job of those of us who are traversing this path to raise awareness of the condition across Africa and to educate the public on what Parkinson’s is and is not.

Your red nail polish really stands out. What other key things have you maintained to accentuate your femininity?

Honestly, it is touch and go with me. I have good days where I consistently have the mental and physical energy required to do many of these things – hair, nails, makeup, exercise, take my meds, and so on. Then there are those other days. Let’s just say you caught me on a good day, thankfully (laughter).

Any final thoughts you would like to share?

On June 16, 2016, the night before I got diagnosed, I made a conscious and deliberate decision to choose faith over fear – faith that I was (or would be) equipped with everything I needed for the journey ahead; faith that Parkinson’s would not get the best of me; and faith that I would find purpose in the diagnosis. I would like to believe that decision has served me well. The journey has been far from easy, incredibly far, but I am a better, stronger, and more empathetic person because of it.

We may not be able to control whether or not we experience adversity, but we have absolute control over how we respond to it.