Hema, who has Parkinson’s and lives in Loughborough with her husband and son, has set up the first Parkinson’s cafe aimed at the Asian community. Here she shares her story behind her inspiration and desire to set up the cafe and the challenges she’s faced along the way.
“Food is a big thing for the Asian community”, explains 54 year-old Hema, mulling over what a typical morning setting up the cafe is like. “So we always make sure there’s plenty available - from puris and curry, to pakoras and dhokla.
“I don’t eat in public anymore because I dribble and make such a mess. But if everyone at the cafe has Parkinson’s and we make a mess together, then it’s OK. I think these little things make a big difference.”
Hema was diagnosed with Parkinson’s in 2016. Working full time as a social worker, she had a fall visiting a foster home. This was following a string of other symptoms she’d noticed including a tremor in her right hand and problems with her handwriting, but had kept brushing off. Breaking her hand during the fall, she quickly realised how serious things had become.
“I got the diagnosis of Parkinson’s and just thought ‘How am I going to manage?’,” she says. “I was the sole earner in our home, I had a huge mortgage, I was caring for my mum. I was working most days of the week including weekends and nights. But I also couldn’t write properly anymore, I couldn’t stand up for long periods and I wasn’t deemed fit to carry on driving, so I lost my driving licence for a while. I knew I had to give up work, and that’s
when the pure panic and horror set in.”
Dealing with change
Hema became depressed, describing the sudden change in identity and side effects of Parkinson's medication too much to handle. “I loved my job, I had a good salary and lots of friends. But it felt like my life had been flipped out of control. I started walking with a stick, I could no longer cook or clean and the pain with my tremor was unmanageable.
I thought: ‘I need to change this - I need to help people. This is my new vocation.’
“I had to claim benefits, which was very degrading and just a nightmare. I became desperate and felt suicidal. Luckily I was seeing a brilliant holistic psychotherapist, who really helped me. My manager also helped me get a great retirement deal on my pension so I was able to pay my mortgage off, and that eased some of the worry.”
It was at this stage that her nephew Shiven got in touch with the local Parkinson’s group in Loughborough, and persuaded Hema to go along. Making regular visits, they started meeting more and more people from the local community.
“We learned so much and gained so much insight. It was great meeting others living with the condition. But I also realised just how much stigma existed in the Asian community,” she explains. “I kept hearing things like ‘God will make you better’, or that the condition was a curse. I thought: ‘I need to change this - I need to help people. This is my new vocation.’”
Armed with a list of contacts from her professional career, including the mayor of Leicester and a friend working on local Asian radio station Sabras, Hema got in touch with Parkinson’s UK Area Development Manager Katie Smith about the idea of setting up a Parkinson’s cafe aimed specifically at the Asian community.
“I said to her: ‘This is something I really, really want to do. There’s so many of us out there who need help.’ Katie was brilliant and really on board with the idea from the get-go,” she adds.
Hema and her family, including sister-in-law Nayna, set up a stall at a religious event where they were able to reach thousands of people. They also put an advert on Sabras radio. Word quickly got out. In June 2019, they held the first Gujarati Parkinson’s cafe in Leicester.
It gives everyone a chance to discuss things without feeling embarrassed or ashamed.
A place to talk
Hema explains the cafe is a place where people can feel comfortable and can talk openly about their problems.
“We have an information stand with resources in Gujarati. We try and get a guest speaker to talk about something, or I might chat about the type of support I’ve found helpful. For example, I accidentally burned my hand while making dinner so I spoke about the wonderful support I got from a Parkinson’s nurse. If someone has a problem or issue, then we’ll try to help them with that. Otherwise people are able to sit and chat informally. It gives everyone a chance to discuss things without feeling embarrassed or ashamed.
“Some people find reading or writing English difficult, so we’ll help them fill in forms or translate materials. Nayna, who can speak Gujarati and Hindi, helps me. And the food and drink makes people feel comforted and reassured.”
Hema explains that the stories she hears are often heartbreaking. “This poor lady explained that her son had been recently diagnosed, but because he was a working professional he didn’t want to face up to any of it. It was so sad. We spoke about what could help him and what steps they could take to get him through it.”
But, the cafe also brings about happier moments.
“As part of the Hindu culture, we celebrate a nine day festival of dance called Navaratri, in the lead up to Diwali – the festival of light,” Hema explains. “It’s something we’re all brought up with and everybody goes to. But for the past few years I just haven’t been able to go because of my tremor and the pain in my legs.
“So, this year we’ve organised that the cafe goes along to one of the events before everyone else does, so we can actually enjoy and partake at our own pace. It’s one of those things that helps us take back a little bit of our lives.”
Along with her sister-in-law and mum contributing to the success of the Leicester cafe, nephew Shiven has also started volunteering with Parkinson's UK, coordinating the Loughborough Parkinson’s group. Hema is extremely proud of him. “He’s really taken it under his wing. He was really upset when I was diagnosed and he wants to make a difference. It’s a big family affair I suppose.”
Hema currently manages her symptoms with a carefully balanced medication regime and by having Reiki twice a week, which she finds helps her pain immensely. “It means I have to take less medication. I am totally pain-free for that time, and the relief is lasting longer and longer.”
So what does Hema have in store for the future of the Parkinson’s cafe?
“10 people turned up to the first meeting, and 14 came to the following one in July. But it’s growing and growing each month.
“There might not be a cure but I meet people who are happy to know that there’s a place they can go to for support, to ask questions and to ask for help. And it’s given me a new lease of life. We want to reach as many people in the community as we can, to say - come on, you’re not alone. We’re here to help.”
Watch Hema talk about the cafe below.