Woman raising awareness of Parkinson’s in Black communities where it’s ‘not talked about’

Linda with her dad Stanley, who died in 2018 (Picture: Parkinsons UK)

A London woman whose dad died of Parkinson’s in 2018 is fighting to raise visibility of the disease in Black African and Caribbean communities.

Parkinson’s is the fastest growing neurological condition in the world with 13,000 people estimated to be living with the condition in greater London.

When Linda Egwuekwe’s dad Stanley was diagnosed with Parkinson’s in 2012, she struggled to find anyone that was going through something similar from her heritage.

Linda, 35, and her family subsequently became full-time carers for Stanley after finding it difficult to seek help elsewhere. 

There are more than 145,000 people in the UK with Parkinson’s, yet the wider conversation is still being held back – particularly in Black and Minority Ethnic communities. 

Parkinson’s UK is throwing an event today in conjunction MS Society and Alzheimer’s Society, for those from Black African or Caribbean backgrounds living with or caring for someone with these neurological conditions.

Speaking about her family’s experience to Metro.co.uk, Linda explains why further support and conversations for Black African and Caribbean people around neurological conditions such as Parkinson’s are so important.

Linda’s dad (L) was diagnosed with Parkinson’s in 2012 (Picture: Parkinson’s UK)

Linda said: ‘My dad was diagnosed with Parkinson’s in 2012, but unfortunately ended up passing away in 2018. During that time, I was one of his carers and we lived at home, it was me, my three siblings and my mum and we all cared for my dad.  

‘Literally, our lives would revolve around caring for him and making sure he had his medicine and anything he needed basically.’

She couldn’t avoid her responsibilities from feeding into personal life too. He added: ‘At one point I was on a date with my now fiancé, and I had to go home because there was no one home to look after my dad. We literally were just being his carers.’

The model and presenter knew she had to do something after Stanley’s death in 2018 and teamed up with Parkinson’s UK after ‘not really knowing anyone’ with her heritage going through the condition. 

Linda is leading the way in opening up the conversation for Black African and Caribbean communities (Picture: Parkinson’s UK)

‘We didn’t really know anyone else who looked like us that had Parkinson’s,’ she said. ‘The only person I’d heard of was Michael J. Fox, and it seemed like he was fine. 

‘I don’t think any of us on the sort of kind of the gravity of the condition and that there’s no getting better.’

She admits her family didn’t seek out much help after her dad’s diagnosis and now hopes to change the conversation around the illness. 

Linda said: ‘My close friends would know, but it wasn’t really something that we spoke about outside [of the home] and I think part of it is that kind of shame that’s associated with an illness. 

Linda was close with her father (Picture: Parkinson’s UK)

‘I think it’s really common in the African Caribbean communities, that sense of not wanting to have anyone look down on you or have anyone feel sorry for you, because you’re going through this illness, this sickness, this condition, so I feel like it just wasn’t spoken about.

‘I didn’t know anyone that I could go to for information on what it [Parkinson’s] looks like for a Black person, if I’m being honest.’

Linda is also thrilled to see today’s event take place in Brixton, where she grew up with her family. 

Recalling the moment when she went to register her father’s death, she said: ‘I actually went to Brixton Town Hall. My family used to live in Brixton, so having an event in Brixton means a lot to me, that is literally where I’ve grown.

‘Even on his on his death certificate it says “Parkinson’s induced pneumonia”, as cause of death and seeing that, the thing that took my dad from me and I wish I’d known, what we could have done while he was here to make it a little bit easier for him or to have prolonged his life, and stuff like that Parkinson’s UK can really, really help with.’

There were some lifelines during Stanley’s time with the illness that were vital in helping give Linda’s mum and family a break from caring responsibilities. 

‘My dad, when he was alive he would go to this place called St. Christopher’s, a hospice where he’d go once every two weeks or once a month and he would just be around other people’, Linda added.

‘It’d be a little break for my mum and a break for us and he would get to go out – that was so important.’

Stanley was even given a volunteer to come to the house once a week and sit and chat: ‘My dad was really big into radio, so he would have the radio on and they will just chat and that form of release, relief, should I say, just helped him still feel normal in amongst what he was going through, 

‘It was so amazing, and the guy who was his volunteer who was his friend was African Caribbean, so it was just beautiful to see, and my dad would really look forward to him coming.

Linda’s family all helped to look after her family with little outside support (Picture: Parkinsons UK)

‘We have to remember these conditions rob them of so much that all they’re fighting to do is feel normal.’

Linda said the opportunity for her late dad to have a friend visit made ‘such a difference’ for Stanley and the rest of his family

She continued: ‘To have a friend come and speak to and just, gossip for an hour or read for an hour just meant so much to him. 

‘That’s the kind of thing that we’re trying to create with awareness is you know, having people of different ages that can speak about the condition but can just help other people feel as though they are normal.’

The Living Well with Parkinson’s, MS and Alzheimer’s event is free and open to everyone, running all day today, and Linda sums up why these open spaces are so vital. 

She concluded: ‘It’s going show Black people that have experienced this what it looks like, even down to taking medicine but also making sure they eat certain things and what diet looks like within the Black community, and how important movement and exercise is to living with the condition.

‘It’s so important to see in the Black community and I think that was what was lacking when we experienced it. 

‘If I’m really, really honest, all we ever saw, even when you look at posters, a lot of the posters and a lot of the media that you’d see that would include Parkinson’s would always be Caucasian people. It was just like, oh, is this like, Is it strange for black person for have it? 

‘Because you almost kind of start feeling like that, “oh, okay, this isn’t normal for a Black person to have all my days. 

‘What could he have done to have put himself in this position when that’s really not the case?”’

Linda will also be hosting a Spring Soiree on April 28, 2023, raising funds and awareness for Parkinson’s UK and bringing together networks of friends, family, industry contacts and Black-owned businesses.

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‘It’s so important to see in the Black community.’