A Londoner whose father died of Parkinson’s in 2018 is fighting to raise awareness of the disease in black African and Caribbean communities.
Parkinson’s is the fastest growing neurological disease in the world. An estimated 13,000 people are living with the condition in Greater London.
When Linda Egwuekwe’s father, Stanley, was diagnosed with Parkinson’s disease in 2012, she struggled to find someone going through something similar from her legacy.
Linda, 35, and her family later became full-time caregivers for Stanley after finding help elsewhere was difficult.
There are more than 145,000 people in the UK with Parkinson’s, yet wider discussion is still being held back – particularly in black and minority ethnic communities.
Parkinson’s UK, together with the MS Society and the Alzheimer’s Society, are hosting an event today for people of Black African and Caribbean background who are living with or caring for someone with these neurological conditions.
Speaking to Metro.co.uk about her family’s experience, Linda explains why further support and conversations are so important for people in sub-Saharan Africa and the Caribbean about neurological conditions like Parkinson’s.
What is Parkinson’s?
Parkinson’s is a disease that occurs when the brain cells that produce dopamine begin to die.
It comes with more than 40 symptoms, from tremors and pain to anxiety.
Some are treatable, but the drugs can have serious side effects. It gets worse over time and there is no cure.
Common symptoms of Parkinson’s are:
- Tremor stiffness (stiffness)
- slowness of movement
- Mild memory and thinking problems
- sleep disturbance
- Mental health issues, including anxiety and depression.
But not everyone gets these symptoms.
People will have different experiences of how their condition changes or progresses.
How Parkinson’s affects someone can change from day to day and even hour to hour.
Source: Parkinson’s UK
Linda said: “My father was diagnosed with Parkinson’s disease in 2012 but sadly passed away in 2018. During that time I was one of his carers and we lived at home, me, my three siblings and my mother and we all looked after my father.
“Literally our lives revolved around taking care of him and making sure he had his medicine and everything he needed basically.”
She could not avoid that her responsibilities also flowed into her private life. 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 were literally just his handlers.’
Knowing she had to do something after Stanley’s death in 2018, the model and presenter teamed up with Parkinson’s UK after she “didn’t really know anyone” as her heir went through the illness.
“We actually didn’t know anyone who looked like us who had Parkinson’s,” she said. “The only person I had heard from was Michael J. Fox and he seemed fine.
“I don’t think any of us over the nature of the severity of the condition and that it’s not getting better.”
She admits her family didn’t seek much help after her father’s diagnosis and is now hoping to change the conversation about the disease.
Linda said: “My close friends would know, but it wasn’t really something we talked about out there [of the home] and I think part of that is that kind of shame that comes with an illness.
“I think it’s very common in the African-Caribbean communities, this feeling that nobody wants to look down on you or feel sorry for you because you’re going through this disease, this disease, this condition, so I feel like I’m just not about it been spoken to.
“I didn’t know anyone to turn to for information about this [Parkinson’s] looks like for a black person if i’m honest.
Linda is also thrilled that tonight’s event is taking place in Brixton, where she grew up with her family.
Recalling the moment she registered 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, I’ve literally grown there.
“Even his death certificate states ‘Pneumonia caused by Parkinson’s disease’ as the cause of death and seeing that is what took my father from me and I wish I had known what we could have done while he was here was to make it a little bit easier for him or to extend his life and stuff like that that Parkinson’s UK can really, really help with.’
Linda’s top tips for supporting someone with Parkinson’s
- Be patient with loved ones
- Make sure medication is taken on time
- Reach out to organizations like Parkinson’s UK – don’t do it alone
During Stanley’s time with the illness, there were a few lifelines that were instrumental in giving Linda’s mother and family a break from caring responsibilities.
“My dad, when he was alive, he used to go to this place called St. Christopher’s, which was a hospice where he would go every two weeks or once a month and just be around other people,” Linda added.
“It would be a little break for my mum and a break for us and he would go out — it was so important.”
Stanley even got a volunteer who would come into the house once a week and sit down and babble, “My dad was really a big fan of the radio, so he left the radio on and they just talked and that form of release, relief, should.” I say it just made him feel normal despite everything he was going through,
“It was so amazing and the guy who was his volunteer who was his friend was from the African Caribbean so it was just beautiful to see and my dad would be really excited for him to come.
“We have to remember that these conditions are robbing them of so much that they are just struggling to feel normal.”
Linda said the opportunity for her late father to visit a friend made a “huge difference” to Stanley and the rest of his family
She continued, “To have a friend come and talk to them and just gossip for an hour or read for an hour just meant so much to him.
“That’s the kind of thing we’re trying to create with awareness, you know, having people of different ages who can talk about the condition but can just help other people feel normal.”
Free and open to all, the Living Well with Parkinson’s, MS and Alzheimer’s event is taking place all day today and Linda summarizes why these open spaces are so important.
She concluded: “It’s going to show black people who have experienced this what it’s like, even down to the point of taking medication but also to make sure they’re eating certain things and what the diet is like in the black community and the importance of exercise and Movement to life are a prerequisite.
“It’s so important to see in the black community and I think that was lacking when we experienced it.
“If I’m really, really honest, even if you look at posters, a lot of the posters and a lot of the media that would involve Parkinson’s, all we’ve ever seen has always been Caucasian. It was just, oh, is that, is it weird for black people to have it?
“Because you almost start to feel like, ‘Oh, okay, that’s not normal for a black person to have all my periods.
“What could he have done to put himself in that position if that really isn’t the case?”
Linda will also host a Spring Soiree on 28 April 2023 to raise funds and awareness for Parkinson’s UK and to bring together networks of friends, family, industry contacts and Black-owned businesses.
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https://metro.co.uk/2023/03/11/london-woman-helping-raise-awareness-of-parkinsons-in-black-communities-18417992/ London woman helps raise awareness of Parkinson's in black communities