What I look like on the outside, is not how I feel on the inside. People often say I look well but especially during the lockdown and with a lack of routine, I felt like a square peg in a round pole. My symptoms have worsened. I’m falling over frequently and my mental health has deteriorated, but when my medication is working you would have no idea.” (Person with Parkinson’s, 2021)
People with Parkinson’s frequently tell us that a lack of understanding from the public is one of the biggest challenges they face.
Life with Parkinson’s can be hard. There are challenges that people aren’t aware of and over the last 12 months with the coronavirus pandemic, it’s been especially hard. As a result, it’s more important than ever that we ensure that they are not left out of public conversations.
Hello everyone,
We want to get Parkinson’s better understood and included in everyday conversations. This survey gives you the opportunity to tell us more about how Parkinson’s affects your life, so we can use your experiences to highlight its true challenges in the media.
To do this, we’re conducting a survey of people living with Parkinson’s and their carers and need as many people as possible to participate.
The survey is being managed on behalf of Parkinson’s UK by Opinium, an independent research agency and it takes about 15-20 minutes. It’s all confidential and anonymous, but if there are any questions you don’t feel comfortable answering, just click “next” to move on.
Over to you
Please encourage as many people as you can to take the survey, it can be found online here. https://url.quenchtec.net/ZQYaxpWZ
Yes I’m afraid this is a survey for people living with Parkinson’s or their carers in the UK only. You are always welcome to explore the Parkinson’s UK website for other research opportunities that may be of interest to you: https://www.parkinsons.org.uk/research/take-part-research
I completed the survey but it confused me because it seemed to be focusing more on my ability to work and my ability to use technology rather than lots of questions about getting Parkinson’s understood or included in everyday conversations. The questions around technology seem to me to be quite narrow and most people will answer positively to these questions due to their design - there is no scope for talking about limitations and difficulties of using technology. Technology has helped me to stay connected to some degree so I have to tick yes to this question without being able to say that video calls have limitations and do not replace face-to-face conversations and also, there was nowhere to explain the extreme difficulties I can have with using devices that are not designed for people with dexterity issues and shaky hands nor the difficulties I experience in sitting still enough to maintain a prolonged video conversation nor the embarrassment I feel when watching my shaking form on camera. Technology can be useful but it has define limitations however I wasn’t able to highlight these when completing this survey. Could just be me overthinking things of course.
Thanks for sharing your feedback with us. I will pass this onto our PR team who are the ones managing this survey and I’ll keep you informed on their response.
