Transforming care for mental health symptoms in Parkinson's
This World Mental Health Day, we're sharing Linda's remarkable story, from caregiver to researcher. As a young girl, Linda grew up watching her dad live with Parkinson's.
Struck by the mental health symptoms he experienced, and the lack of awareness and support available, Linda's now pursuing a PhD to address these challenges head on.
World Mental Health Day is celebrated each year to raise awareness of mental health issues around the world and advocate for better care and support. The theme this year is 'Lived experiences heard: real voices, real change'.
Every Parkinson's journey looks different, but for many, mental health symptoms can be a challenge. We met with Linda to hear her story, and how she turned her personal experience into purpose.
What was it like growing up with Parkinson's in your family?
Linda, pictured with her brothers, shared: "I was about 13 years old when my dad was diagnosed with Parkinson's. It was definitely a very confusing time, especially as a child. I didn't know what Parkinson's was, and neither did my mum".
"Learning that your parent can no longer care for you in the same way, and stepping into a caregiving role yourself at a young age, is not something easily explained to friends or understood by others.
"I often searched Facebook groups and online forums for other young people in situations similar to mine. I felt that the people around me who weren't living through something similar might struggle to understand. It was also difficult to explain when I was still trying to make sense of it myself."
What symptoms did your dad experience?
"What struck me most was not only the movement symptoms people associate with the condition, but the mental health challenges too.
"For a few years before my dad was diagnosed, he struggled with stress, anxiety and difficulty sleeping. At the time, we saw these as separate issues. We didn't realise that these kinds of non-movement symptoms can sometimes appear before the more recognisable movement symptoms of Parkinson's."
Dad was finally diagnosed with Parkinson's when he developed a tremor and, after that, he started taking Parkinson's medication. We now know that for a lot of people, mental health symptoms can come before movement symptoms.
"He experienced other mental health symptoms as the condition progressed, some of which were side effects of medication. Things like psychosis, meaning he sometimes experienced hallucinations and delusions. I don't think people realise that these problems are actually quite common in Parkinson's."
Read more about hallucinations and delusions on our website.
Can you tell us about your journey into Parkinson's research?
"My dad passed away one month before I moved to begin my Master's in Mental Health Studies at King's College London. Initially, my research wasn't related to Parkinson's. I was a little scared to go into Parkinson's research; it had taken so much from me growing up already. Did I really want to dedicate the rest of my life to this condition as well?
"But exactly a year later, I was accepted into a Data Driven Health PhD programme (DRIVE-Health) with a proposal I'd written on using Artificial Intelligence (AI) to transform Parkinson's research and care. I'm now a few years into my PhD, which is based at the AI in Mental Health Lab at King's.
"Part of my research is using AI to develop tools that can predict different outcomes for people living with Parkinson's. Including whether a person is at risk of developing the condition, how likely they are to develop mental health symptoms, and how they might respond to different treatments."
Why is it important that we can predict these outcomes?
"Some non-movement symptoms, such as anxiety or sleep problems, can appear before the more recognisable movement symptoms. Understanding who might be at risk of developing Parkinson's can help us identify the condition earlier and provide the right support. It also could create opportunities to give treatments earlier, when we have treatments that may help slow its progression.
"Psychosis is a common, but less well-understood mental health symptom of Parkinson's. If we can use these tools to better understand these symptoms and predict who may be at risk of experiencing psychosis or other mental health symptoms, such as depression, anxiety and apathy, we may be able to monitor and support people sooner."
How does your personal experience of Parkinson's feed into the research that you do today?
"I had to watch my dad go through a lot of trial and error with his Parkinson's medications. I know that period of time can be really hard for people and their families.
"That experience really guides my focus in helping people receive the treatment that is most likely to work for them. Using AI to predict which treatments may be most effective for different individuals could help move us towards more personalised care. Parkinson's is not a one-size-fits-all condition, and treatment shouldn't be either.
"I hope my research can help reduce some of that trial and error and pave the way for a more personalised Parkinson's journey."
What would you say to a young person who has a parent living with Parkinson's?
"It's okay if it feels confusing. You don't have to have all of the answers right now. Parkinson's can bring different challenges over time, so I would say cherish the time you have with your parent at every stage, despite the challenges, and take things one step at a time.
"I'd also encourage young people to reach out and talk to others. As an adult, I discovered that a childhood friend I had sat next to in class had been going through a very similar experience with a parent, and neither of us had known. We could have supported each other simply by sharing what we were going through, even if that just meant being confused together.
"Today, she's running marathons in support of Parkinson's UK in my dad's name. Charities like Parkinson's UK can be life-changing in helping people find that sense of community and support. I recently attended a Walk for Parkinson's event in Battersea Park, and it was really heartwarming to see so many families and young people coming together."
What's your proudest moment of your career so far?
"I think the day I got the acceptance letter for my PhD, because it was exactly one year after my dad had passed away. The year before, I'd had no idea that I was going to study Parkinson's. And within the year, I'd completely shifted the trajectory of my life."
Parkinson's had already been such a big part of my life, that I didn't always want to talk about it. But at the same time, it shaped who I am today. I think if I was talking to teenage me, she'd say, "Oh nice. We did something with that!"
"I hope others navigating similar experiences can recognise themselves in my story, and might feel inspired to see a future for themselves in research too."
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