Managing Parkinson's as an African woman living in the UK

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.

In 2015, a specialist told me that the odds were in my favour. He told me that my age, gender and ethnicity made a diagnosis of Parkinson’s unlikely.

I didn’t fully realise 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 sooner – a young African female living with Parkinson’s, just like me. 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 people affected by the condition from all different backgrounds. Some have shared with me the coping mechanisms, exercise regimes and alternative therapies they use to get by.

Others have candidly talked about their struggles with balancing parenthood, professional careers, their sanity and Parkinson’s 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 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 recognised the gaping hole in my heart resulting from the loss of this 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? I wonder which part of Africa you are from. Are mental health issues seen as legitimate health concerns over there or are they stigmatised? Is support available?

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 little is known about how Parkinson’s affects people in Africa, compared to Europe and America? Do you realise we have the power to change that? Do you understand that we can positively impact the lives of other African women – and men – living with Parkinson’s, by sharing our stories with them? If we really put our hearts into it, I’m sure that we could ultimately change lives.

To do this, however, requires effort. We must find the courage to lend our voices to the ongoing discussions about Parkinson’s. Our stories and our experiences also need to be heard globally.

We must be willing to volunteer our time and expertise to support groups, workshops, conferences and organisations 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 wellbeing and, by extension, the wellbeing of our children and our families.

We simply must get involved. But first, I need to know you’re there.