Toussaint's story: Honouring our communities

Black History Month is an opportunity to reflect on and celebrate the impact of Black culture. This year the theme of Black History Month is "Honouring Our Communities", recognising the individuals whose everyday contributions shape, support and sustain Black life across the United Kingdom.

Toussaint (centre of the picture above) is a research volunteer who, since being diagnosed with Parkinson's, has been working to inspire and encourage others in his community to get involved.

Toussaint's story

I was initially unaware that Parkinson's could affect people in their 30s and 40s. As my symptoms became more noticeable, I started to feel that something wasn't right. After experiencing more symptoms, I stopped ignoring them and began searching online for answers. Some of what I found seemed consistent with Parkinson's, but I never expected that to be the cause, especially at my age.

I contacted my GP, but the doctor I spoke to told me it couldn't be Parkinson's. That response made me question what I was experiencing and led to even more self-doubt. This was during the pandemic, when only urgent cases were being seen in person. Every time I called the surgery, I seemed to speak to a different doctor, and I often felt dismissed over the phone.

After months of uncertainty, I knew I needed answers. I decided to see a private neurologist at Queen Square and was offered an appointment the very next day. Within 10 minutes, I received my diagnosis.

I was diagnosed in 2021 at the age of 35. It had been almost two years since I first contacted my GP, but it felt like much longer.

I didn't seek out support immediately after my diagnosis. When I eventually felt ready, I started looking for support groups and other people living with Parkinson's through Facebook, social media and local community networks. I was surprised to find there were only a handful of groups in West London, and most were geared towards older people living with the condition.

Building a community

So, I decided to create a Parkinson's group in my local area of Ealing. While one of my aims was to connect with younger people like myself living with Parkinson's, I wanted the group to be open to everyone affected by the condition. That includes people living with Parkinson's, as well as their families and friends.

The group provides a welcoming space where people can meet, share experiences, support one another and discuss how we navigate daily life with Parkinson's. Living with the condition can be challenging, and having a community around you can make a real difference.

Since then, I've become a member of the Parkinson's UK Black, Asian, Arab and Mixed Heritage online support group. Every month, we come together to discuss different aspects of living with Parkinson's and to support one another through shared experiences.

Find out more about the online support group and how you can join.

Being part of initiatives that are designed for people who look like me is incredibly important. A Parkinson's diagnosis can leave you feeling isolated and alone, so having a community where people understand your experiences and perspectives can be invaluable. It's also important to have safe spaces where people can discuss concerns that may be particularly relevant to Black communities and learn from one another.

I believe education about Parkinson's and its impact is essential. Learning more about the condition has helped me find ways to live well and feel more in control. It also enables families, friends and communities to better understand how they can support people living with Parkinson's.

Why research matters

I think it's important for people from Black communities to consider taking part in research because our experiences, perspectives and health needs deserve to be represented. When people from all backgrounds are included, research findings become more accurate, relevant and beneficial for everyone.

Historically, Black communities have often been underrepresented in medical research, including research into conditions such as Parkinson's. By taking part, we can help researchers better understand how Parkinson's affects different people and communities. This can contribute to improved treatments, services, support and, ultimately, better outcomes for future generations.

I would encourage people from Black communities to get involved because it's an opportunity to make your voice heard, help shape future research and contribute to meaningful change.

Every person who takes part helps build a more complete understanding of Parkinson's and brings us one step closer to better outcomes for everyone living with the condition.

Ultimately, I hope that continued research will one day lead to a breakthrough and a cure for all those living with Parkinson's. By taking part in research today, people have the opportunity to play a part in making that future possible.