Mental health and Parkinson's: 3 sides to the story
Father and daughter Gary and Amy discuss the hidden symptoms of Parkinson's, and researcher Linda explains what inspired her work.
Reading time: 5 minutes
Gary was diagnosed with Parkinson's while recovering from a head injury. His main symptoms are anxiety, stress and low self-esteem
"The best way I can sum up having Parkinson's is that it feels like I'm living in a body that's not functioning right, not only physically, but more importantly, mentally. And that's the part of Parkinson's that people don't see. I carry the PARK2 gene and have been told that is linked to mental health symptoms.
"Managing my mental health is a constant battle. I do little things every day to make myself feel better, like exercising, eating healthily, and taking rest when I need to."
Rest isn't giving up. It's part of the mission.
"Parkinson's nurse appointments are really thin on the ground, so managing my mental health is a learned thing for me. Simple things like exercising, pottering around, doing something simple every day that gives you a sense of worth. Baking, cooking nice meals, and resting if you do get tired and need to put your feet up."
Find out more about how Parkinson's can affect your mental health
Gary's daughter Amy was 23 when he was diagnosed with Parkinson's
"There was a huge shift in that parent-child dynamic. I instantly felt like I needed to take care of him and take some of the responsibility and burden of his diagnosis. I tried to put on a brave face and attended lots of hospital appointments with him, which were really quite intense and hard-hitting.
"And then as time has gone on, it's just a matter of being there for him. I feel like I constantly have to be strong and support him, which can be difficult at times. Some of the things that he tells me, like the impact of his mental health, or the symptoms that he's struggling with, can be really hard to hear."
When you hear that a loved one is struggling, it can be really upsetting.
"I try to spend as much time as I can with my dad. I try and make things fun. We spend lots of time together. I come over to visit him, and we just have lunch or dinner together. We often have trips away together as well, which is a nice family time.
"The way I manage my mental health is by exercising regularly. I find it really helps with stress levels and clearing my mind. I have a really good support network of friends around me who are amazing and are always there at the drop of a hat if I'm ever struggling with anything."
Read our information for friends and family members of someone with Parkinson's
Linda Bryant was 13 when her dad was diagnosed with Parkinson's. Now she works in Parkinson's research
"For a few years before my dad was diagnosed, he had anxiety and found it difficult to sleep. We were treating them separately; keeping him calm so he wasn't stressed and trying to find ways to improve his sleep.
"He also experienced more severe issues, like psychosis, where you can hallucinate or have delusions. I don't think people realise that these problems are actually quite common in Parkinson's.
"Part of my research is using AI to develop tools that can predict different outcomes for people living with Parkinson's. That includes 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."
Finding the best treatment, first time
"I had to watch my dad go through so many trial and errors with his Parkinson's medication. I know that period of time can be really hard for people with Parkinson's and their families.
"That experience really guides my focus in making sure people are given the right medication. Using AI tools to predict which treatments have the highest chance of working for different individuals moves us towards personalised treatments, which are more likely to be successful.
"It's not a one-size fits all. I hope my research can transform Parkinson's care, paving the way to a more personalised Parkinson's journey and making sure people receive the treatments that they need."
