The web forum that helps Parkinson’s sufferers in the real world
Have you ever googled a medical problem for yourself or a loved one? How did you know what websites to trust, or what advice was relevant to you? This is where the combination of a trusted charity and a .uk address can really help — not just with helping you find the right information, but also connecting you to networks of people who can share their experiences and support.
In the summer of 2013, Karen Missenden was walking up the stairs in her house when she felt a tremor in her arm. Later when she went back down, she felt another. “Nothing like that had ever happened before,” she says. She wondered if she had nerve damage due to shoulder surgery she’d had earlier that year, and decided to go and see her GP.
Within four months, a neurologist at Lincoln County Hospital diagnosed her with Parkinson’s. By then, it was something she had predicted. “I had begun to get restless leg syndrome; my legs were kicking and kicking every night in bed. I felt my eyesight slightly deteriorate. I’d been on the Parkinson’s UK website and checked my symptoms there — I ticked all the boxes.”
The website isn’t just for diagnosis though. It can be a vital support tool in itself.
The Parkinson’s UK online forum is a hub of activity for Parkinson’s sufferers, their families and carers. It connects them to an extraordinary range of help, support and opportunities, from putting them in touch with local meet-up groups to giving them space to express themselves in an online poet’s corner. Run by a team at the London-based charity Parkinson’s UK, the forum has been vital for Karen, as well as hundreds of others, as they navigate the day-to-day challenges of Parkinson’s.
In Karen’s case, she was diagnosed relatively fast. Sometimes, a Parkinson’s diagnosis can take years. At 47, she was also a few decades younger than most patients. “You have to push to be taken seriously,” she says. “The belief still prevails that Parkinson’s is an old person’s illness.”
Faced with Stage 1 Parkinson’s, Karen was plunged into an unfamiliar world. She immediately began to take medication and noticed that with just one pill, her tremors alleviated. She began taking three tablets a day, a prescription that has gradually increased in the two years she’s been living with Parkinson’s.
“In my heart of hearts, I was mortified,” she says. “But I’m a fighter.”
“Before I started contributing, I’d been reading other people’s posts. I could see how informative they were, and how willing they were to talk about their condition and help each other.”
It’s empowering to be able to connect up to other people around the country who are going through the same thing as you
It’s empowering to be able to connect up to other people around the country who are going through the same thing as you. Without the forum, hundreds of people would be experiencing their condition in far more isolated circumstances. Karen’s first dip into forum waters was a question about the side effects of a certain medication; she had tinnitus in her right ear and wanted to know if anyone had experienced it. A member of Parkinson’s UK talked her through her symptoms. That was the start of her forum activity; she is now an integral member.
“I try to be pro-active in every possible way. When someone first joins, sometimes you can sense the fear in their words. I remember how that felt. When I was first diagnosed, I ordered a book from the Parkinson’s Head Office and read it in my living room, crying. If you’ve got that depth of understanding, you can reach out to others.”
When Helen Morgan, from Aberdeen, was diagnosed in 2012, her husband found the forum for her. “Everyone is at a different place — there are no two days the same in your Parkinson’s journey, and the forum is invaluable for its support,” she says.
And ‘Casie’, another forum user, has had Parkinson’s for 26 years. “You don’t know who these people are,” she says, “but you can all help each other. If you’re going to hospital, you can tell them — and they’ll back you up if you need it.”
Sometimes, offline help happens too. “There was a woman on the forum who I could tell was sinking into depression,” says Karen. “I gave her my number and when she called, we talked for two hours. Depression is a common side-effect of Parkinson’s — I advised her she needed to see someone to help stabilise herself. Afterwards, she told me that I wasn’t medically qualified, but I was morally qualified.”
Having someone reach out and talk for two hours — someone who understands your condition — can be crucial. Being able to go online and find empathy, support and advice is just as important. By providing this, the Parkinson’s UK forum is making lives better, every single day.
This story is one of 30 celebrating the launch of .uk domain names in 1985. To read the others visit our 30 Years of .uk hub. To start your own .uk story check out www.agreatplacetobe.uk.
