Parkinson’s is just another normal condition, which requires care and love. But, for some South Asian households, the condition carries with it a ton of superstition.
Meet, Shafaq Hussain Ali, a dentist based in Wakefield, West Yorkshire, who was diagnosed with Parkinson’s when she was aged 40.
“When I was wearing high heels, my foot would give way, and I would fall over, it happened once or twice, and then I stopped wearing high heels and switched to flat shoes, and even then, my right foot would sometimes turn on itself, and I would fall over,” she recalls the symptoms.
“I had a bit of physio to help me out, my hand tremored a little bit, eventually all these symptoms built up and by the time I was 39, I realised all these symptoms weren’t just separate things, going on, they were linked. When I used my mouse at work, I wanted the right button to be pressed, the left button would be pressed, my fingers would move, which isn’t right.
Then I started looking into what would cause that, my husband did as well”.
It was after all these symptoms, a run to doctors and physiotherapists, in July 2019, when Mrs Ali was 40 years old, she was diagnosed with Parkinson’s.
Speaking of the reaction of her and people around her, the dentist says that she was shocked, and her husband went into a “hyperdrive” reading about Parkinson’s.
“I knew it was coming, but I couldn’t process anything”, she says.
“I was worried, how am I going to tell others, how am I going to tell my mother-in-law, they are proud of me.”
“People said things like ‘nazar lag gayi bacchi ko’ (she has caught an evil’s eye)” she recalls.
“I thought that people would look at me funny, when I went to the community centre or the mosque, I had all worries in my mind, not for me, I am strong, but my mom and mother-in-law, she’s an older generation, I was worried about how it would affect them.”
Eventually, Shafaq Ali Hussain, announced her Parkinson’s a year after she was diagnosed, on Facebook, when it was Parkinson’s day.
“This is what Parkinson’s looks like, you can be brown, you can be young, you can be working in healthcare, and you could still have this condition,” she says.
“I tried to take control of the narrative, but people would still be whispering, I tell them, you know what, this is me, this is what happens to me, if you like it fine, if you don’t, I don’t care, and you can’t talk about me like that” she exclaims.
“People think it’s something like kala jadoo”, Mrs Ali says, claiming that people treat it like a mental condition. “I want people to go see the doctor”, she adds.
“I want people to know, you can live well with Parkinson’s, you have to be open, and ready to ask for help”.
Speaking of the strong role of superstition within the South Asian community, especially surrounding Parkinson’s, Shafaq says, “I think, we need to start facing it and accept it as a problem, and we need to recognise that the problem needs to be addressed head on. It happens gradually, people of my generation, we must understand that older generation might find it difficult, we must be gentle.”
“You don’t have to tell the whole world, but you have to seek advice”.
“It isn’t a bad thing, it isn’t nazar lag gayi, it isn’t kala jadoo, it is just way things happen, you didn’t do anything bad in the past life”.
“This is what they say right? Pichle Janam pata nahi kya kiya tha (wonder what she did in her past life)”, she adds.
“Sometime things happen, we need to accept that,” she claims.
“You need to be patient, you need to understand that its normal, its not kala jadoo, it’s not nazar, it’s a medical condition like Asthma or diabetes”.
“Kisi ki nazar nahi lagti hai (There’s no such thing as an evil eye), you need to break this mentality” she adds.
In a message to South Asian households, who have someone with Parkinson’s she says “I want to tell them that it’s okay, it doesn’t matter that you have Parkinson’s, it’s not the end of the world. You must seek help, you must get treatment, don’t be scared to take medicine, it isn’t about anything, look for people to talk to, there are organisations like Parkinson’s UK who does this, you must not hide things”.