I looked for you. I looked everywhere… well, technically, not everywhere, but I searched for you in different places. Where are you? I can’t seem to find you.

Two years ago, a neurologist told me that the odds were in my favor. He told me that my age, gender, and ethnicity made a Parkinson’s disease (PD) diagnosis unlikely. Those words gave me hope. Months later, I got diagnosed with PD and, in an ironic twist, those same words now caused me concern – were there other PD sufferers with similar characteristics as mine, or was I alone?

I didn’t fully realize it then, but my life was about to change, drastically. Today, I wonder if I could have avoided certain pitfalls had I met someone like you - a young African female living with PD - earlier. I’d like to think you would have prepared me for some of the changes that were about to unfold in my life. Don’t get me wrong: in the 15 months since my diagnosis, I have met and formed beautiful friendships with male and female PD sufferers from different backgrounds. Some have shared with me the coping mechanisms, exercise regimens, and alternative therapies they use to battle this disease. Others have candidly talked about their struggles with balancing parenthood, professional careers, their sanity, and PD symptoms simultaneously. I have found these relationships extremely beneficial, yet I still can’t help but wonder if you would have better prepared me for the unique challenges that I - another young African female living with PD – would face.

I imagine you would have warned me that I would soon be at the mercy of expensive hairdressers because, slowly but surely, I would lose the ability to comb, braid, and plait my afro kinky hair by myself. I bet you would have told me that the pain from that loss would pale in comparison to the heartache I would experience from no longer being able to manage my own daughter’s afro kinky hair; that I would suffer guilt and shed tears every single time I could not take my little girl to the hairdresser, and she had to painfully endure hours of me trying to detangle, wash, and plait her hair. You, more than anyone, would have recognized the gaping hole in my heart resulting from the loss of an activity that was once a mother-daughter bonding experience; an activity I engaged in with great pride.

If you grew up in certain parts of West Africa, I’m sure you would have informed me that I would also lose the dexterity required to quickly stir, knead, and prepare some of our staple foods (like amala and fufu) for my family; that this would cause me to feel highly inept and incompetent every time I tried… and failed. You probably would have pointed out that the repeated cycle of trial and failure, coupled with the ensuing sense of inadequacy, would exacerbate my already simmering struggles with anxiety and depression.

Speaking of anxiety and depression, can you tell me if you experienced them? Did you ever find someone who you felt truly understood? What part of Africa are you from? Are mental health issues seen as legitimate health concerns over there or are they stigmatized? Are resources readily available or is the societal disposition one that neither condemns nor assists people experiencing mental health challenges? For a period, I suffered greatly with anxiety and depression, but I was too confused and embarrassed to talk about how much it really affected me, even to those around me. It just wasn’t something that we talked about, had much information on, or understood growing up in Nigeria; but that did not change the reality that this was a real challenge for me. It would have been helpful to have had your input on how to navigate these terribly murky waters.

My sister, where are you? I can’t seem to find you. Are you aware that the epidemiology of PD in Africa, compared to Europe and America, is largely unknown? Do you realize we have the power to change that? Do you understand that we can positively impact the lives of other African women (and men) diagnosed with PD simply by sharing our stories with them? We can provide them with updated research information and helpful tools to ease some of the atypical burdens we undoubtedly know they bear - you and I know that I only scratched the surface on the unique challenges we face against this monstrosity of an illness. If we really put our heart into it, can you see that we can ultimately change lives?!

To do this, however, requires effort. We must find the courage to lend our voices to the ongoing discussions about PD; our stories and our experiences also need to be heard globally. We must be willing to volunteer our time and expertise to PD support groups, workshops, conferences, and organizations at home and abroad. We cannot afford to remain silent and sidelined (by none other than ourselves) in conversations that are of great consequence to our well-being and, by extension, the well-being of our children and our families.

We simply must get involved, and I have different ideas on how we can do this together – but first, I need to know you’re there.

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Omotola Thomas, MSc established her website ParkinStand after being diagnosed with Parkinson's at the age of 35. She established ParkinStand to motivate people who are living with any type of illness to fight back with information, proper nutrition, and exercise. You can reach out to her for more information or to say hello here. (You'll have to scroll to the bottom of the page to find the contact sheet.)

Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®