When I set out to create our latest experience, A Life in a Day of a person with Parkinson’s disease, I was prepared to follow our usual creation process, interviewing various patients and learning about their symptoms and challenges to translate into our programme. What I didn’t realise is that the whole process would result in me discovering a world of experiences that go far beyond what most people understand about the condition.
Patient, Patient, Patient…
At A Life in a Day, we appreciate that we cannot mirror the exact conditions and challenges that patients go through daily. We try to honour as many patient stories as possible; to encapsulate the journey they go through living with their condition. As I started talking to some of the people living with Parkinson’s, I began to quickly realise that there wasn’t a common trend or theme of experiences with these individuals, and their stories were extremely varied. I felt it paramount to ensure that we didn’t fall into the trap of running with supposed commonalities and decided to continue talking to our patient community to make sure we absorbed as much from them as possible.
As a result of this, I ended up interviewing the most patients ever involved in an A Life in a Day experience. They ranged in demographics, stories, symptoms, and impacts and the results were beyond anything I could’ve imagined. From young onset to later-life diagnoses, each case was different, and these differences shaped how we approached building the experience.
Challenging Perceptions: More Than Just Tremors
Many people envision someone with Parkinson’s as elderly, visibly shaking, and perhaps struggling to move or speak. While this can be part of the experience, it’s only one piece of the puzzle. I interviewed several individuals with young onset Parkinson’s—diagnosed under the age of 50—who shared a completely different narrative. Many of them described their experience as manageable, especially in the early to middle stages. I spoke to one woman who was diagnosed over 15 years ago. She told me that, at the time, she was given a serious prognosis: “Five good years, and then you’ll be in a wheelchair.” But as it turned out, that was far from her reality. She spent over a decade adapting to and managing the condition.
This divergence from the expected image of Parkinson’s was a vital insight. It reinforced the importance of including a range of perspectives in the experience. Including this range meant emphasizing that Parkinson’s isn’t a one-size-fits-all disease—it’s an incredibly personal journey that can look vastly different depending on factors like age and progression rate.
The “Invisible” Symptoms of Parkinsons
During these interviews, I also learnt about a variety of non-motor symptoms that people living with Parkinsons may deal with. Some of the people I spoke with shared experiences with anxiety, depression, and even apathy—a profound disinterest that feels separate from depression but just as impactful. These mood disorders arise not because of their lived situation, but as a neurological effect of the lack of dopamine in the brain that causes Parkinson’s in the first place.
Patients also shared other unexpected physical symptoms of the disease with me, such as a loss of smell, with one interviewee sharing that her own sense of smell had been diminishing long before she was even diagnosed. It further proved to me that I needed to create a holistic representation of living with Parkinson’s for our experience.
Creating the A Life in a Day of living with Parkinson’s has been both enlightening and humbling. Every interview, every story, has shaped this project into something more than a simulation of symptoms—it’s a window into the varied, powerful lives of those navigating Parkinson’s, and a testament to the human spirit’s ability to endure and adapt.
