The Charco Blog

The importance of shared experiences, with Kate McClintock

We met with Kate McClintock, an advocate for awareness of Young Onset Parkinson’s, to discuss her experiences.

“I didn’t want to just sit back”

Kate’s energy is immediately evident. She’s friendly and welcoming, and makes us feel at ease from the first moment. She’s clearly not one to find being an interviewee daunting; Kate begins to talk to us freely about herself, and her incredible honesty and talent for self-expression makes it clear from the start that she’s someone who’s perfectly positioned to share her experiences and raise awareness.

Kate was first diagnosed with Parkinson’s at the age of 36, though she had felt something was wrong for over a year, when she had noticed that her right arm had lost its swing. “I had done my own research, and had figured out that I had these symptoms”, she says, though it took 15 months before she was finally diagnosed. “I had X-rays done and lots of other things, and it took me breaking down in tears in a doctor’s surgery for them to finally look into it”.  When she was finally diagnosed, she says she felt an odd relief; “I had spent so long thinking about what it could be that I thought it could be motor neurone disease. Finding out it was Parkinson’s was almost a relief, as at least it wasn’t that.” 

Things were not easy for Kate in the aftermath of her diagnosis; as a fiercely independent woman, she tried to hide the worst of her symptoms from her family, and that her parents found it particularly difficult to accept her condition. Even now, she tells us, her dad finds it hard to come to terms with her Parkinson’s, though the situation is better now than early on.

Kate was also forced to give up her job in the NHS, where she had worked in an operating room. “It was quite a manual job, with all the operating instruments that I had to handle, and so I had to give that up”. For someone like Kate – a self-described workaholic – this was particularly trying. “I was never one for taking time off, and I always prided myself in what I did.  Having to leave was hard, though I was lucky enough to  get early retirement”. Adjusting to life with Parkinson’s is never a smooth process, and this was true for Kate. She was left without work, a situation that she found uncomfortable; “I didn’t just want to sit back… I want it to feel like I’ve been given this illness for a reason.”

“I’ve always wanted to help people”

After five years of living with Parkinson’s, Kate decided that she had to do something that “used [her] Parkinson’s in a good way”. This led her to create a blog, Don’t judge a book, that shared her experiences in an effort to raise awareness of Young Onset Parkinson’s. “I wanted to show people that it’s not just older people who get it, and that they weren’t alone in going through the pain”. This has led Kate to share the most difficult times on her blog. It’s a striking and incredibly personal story that details her less painful moments, such as finding it difficult to eat at a restaurant, to the most painful times in which she’s unable to move anything but her head. We ask if this was something that she came to slowly, but she shakes her head. “I sort of went straight into it… I’ve made videos on everything.” Kate hasn’t shied away from confronting and sharing the most difficult parts of her Parkinson’s, and the blog is a powerful record of her experiences.

This bravery has led her to discuss a range of topics, from her difficulties with medication to her struggle to get disability benefits, in which she spent two years struggling with the courts to be approved for disability benefits. It’s clearly something that still angers her; she tells us that “It was a difficult time, and it really affected me and my parents… I was determined not to let them stop me, but I can imagine that for so many people, it simply isn’t something they can do.” Throughout it all, people have messaged her, telling her of their similar troubles. “Applying for disability benefits is already hard, and if you have someone who can’t leave the house, it becomes impossible”, she says. Sharing her experience online has led to others sharing their difficulties with her, and explaining the hard times that they’ve faced. “People will message me and say ‘I’ve had difficulties with this too’… It helps to hear that”. The help clearly goes both ways; though Kate began the blog as a way to help raise awareness and to show others that they aren’t alone, the community she has created has undoubtedly had benefits for her as well.

This in turn has led Kate to create an online forum, in which people can share and discuss their experiences; in particular, Kate has found that a number of people have also shared their most difficult moments. “There wasn’t really a space for that,” she says, “and I think it really helps to be able to share those things and just ask people ‘is this normal’”. Kate’s honest and open example has resonated with many people, and she’s found that simply talking about things has been hugely beneficial to people around the world. In Kate’s experience, so many of the ideas around Parkinson’s have been focussed away from the reality of the condition, including the fact that everyone’s Parkinson’s is unique, and that it can affect people of all ages. Her forum and blog have helped others to discuss their symptoms with more confidence, and have helped bring together people online who may otherwise feel alone.

Kate’s reason for beginning this community and continuing to advocate for YOPD awareness is something that can be expected from someone who worked tirelessly for the NHS for many years. “I’ve always wanted to help people.” she tells me, smiling. “It doesn’t matter if it’s this, or if it’s organising a birthday party; I want to do something good.” Providing this space has undoubtedly done a world of good, but Kate is also keen to lead by example. “People have so many fears around Parkinson’s, that it will lead them to become a stereotype… so by dressing well and living my life as I want, I hope to encourage others.” Kate’s fearless attitude is something everyone could hope to replicate, and her honesty and determination have been greatly appreciated by so many.

“I hope that it will help to bring people confidence”

Kate isn’t one to rest on her laurels, and the success of her blog and forum has led to her planning other great projects. In particular, she is now doing live chats, giving people the chance to ask her questions in real time, making her more accessible and further helping to create a discussion around YOPD. She is also planning a charity event to raise money and awareness for charity. The idea for this came from a chance meeting with another person with Parkinson’s, who was doing a charity walk in Newcastle.

“Me and my partner dropped everything and drove up there, really on a whim, to meet her.” They spent the night at her house and got talking, and eventually Kate was introduced to the CEO of the Cure Parkinson’s trust. This has led to Kate devising her own charity event, which is sure to have people excited. “I wanted to show people that you can still be trendy when you have Parkinson’s. Some people don’t like to do stuff online, which is fine, so I hope that something like this will really help to bring people confidence.” Kate is someone whose enthusiasm and determination shines through even through the most difficult times, and with her efforts focussed on such worthy causes, it seems likely that she’ll have great success as she continues to advocate for awareness of YOPD.

“My motto is just do it”

Kate’s attitude to life has seen her through the most difficult times, and has helped her to gather a community around herself that can support one another through their most painful symptoms. Having now had Parkinson’s for nine and a half years, she is on the waiting list for DBS, and is facing these future life changes with characteristic resolve.

As the interview comes to an end, we ask if Parkinson’s has changed her as a person, to which she nods. “It’s hard. It’s a really hard thing. I do think, though, that it’s made me appreciate every little thing now.” She nods and flashes an infectious smile. “You spend your whole life worrying about things you don’t need to worry about. Now my motto is just do it, because you never know when you will be able to do it anymore, you know?” It’s a worthy motto for someone like Kate, and one that is sure to help her continue her amazing work.

Thank you to Kate McClintock for sharing her story with us. You can find her blog here, or find her on Twitter here.