Living with Parkinson's and depression
Julia shares her story of living with Parkinson’s and depression, and the coping strategies she uses to improve her mood.
Julia recalls the time she experienced her first bout of depression. “For ages I thought I was just really tired and under the weather,” she says.
“I got signed off work and ended up lying around the house in my dressing gown all day, watching hours and hours of TV. I’m normally quite an active person but everything came to a standstill. I felt a total sense of loss. I just stopped being me.”
Julia had been diagnosed with Parkinson’s a few months earlier, at the age of 36.
'Disco leg'
“I don’t think it was a coincidence that my mental health got worse around the same time as my Parkinson’s diagnosis.
"Before then I’d never really had problems with my mental health. The impact that being told you have Parkinson’s has on your life, the neurological changes in your brain – it all seems quite interlinked.”
At the time Julia was working as a nurse, had just remarried and moved to Dorset, with her 2 young children.
“I got a tremor in my leg, which got worse whenever I experienced strong emotions – anger, excitement, seeing a handbag I loved in a shop,” she adds, laughing. “My family just joked and called it my ‘disco leg’. I didn’t think it would be anything serious and didn’t see a doctor for a while.
“I was feeling so settled. I had a new life and everything was falling into place. I just wasn’t expecting it. I thought, ‘I’m far too young and glamorous to have something like Parkinson’s!’”
Fading
Julia describes it as being a frightening period in her life. Her doctor at the time recommended that she didn’t start on Parkinson’s medication straight away.
“They told me the drugs would eventually stop working so I should stay off them as long as I could, which is obviously quite different to what they tell you now”, she adds. “It was all a lot to take in and I started to feel scared. I was grieving – I couldn’t accept how drastically my life was changing.
"I was a nurse and so was used to dealing with other people’s health problems, but this knocked me sideways.”
Julia explains how her sense of humour and the support of family and friends, including husband Mark, kept her buoyant at first. But this slowly started to fade.
“I love a good laugh but it crept up on me – I stopped enjoying life, had no pleasure in anything and felt like all I could think about was myself. This made me feel even worse – the guilt of feeling selfish. It was like the Parkinson’s and depression started to take everything away from me.”
I think the therapy helped me take back some control – it felt like I was being proactive instead of lettings things get taken away from me.
A problem shared
Julia ended up speaking to a Parkinson’s nurse, who told her she needed to start on medication as soon as possible, and also think about antidepressants.
“It took a while to find the right medication for Parkinson’s, and I was really reluctant about antidepressants at first,” she adds. “I had really bad drowsiness but I ended up persevering. After a few weeks it all settled, and I even managed to go back to work.”
At this stage Julia got in touch with a Parkinson’s UK group for younger people, where she met like-minded people who were going through the same thing as she was.
She also decided to ask her GP about cognitive behavioural therapy (CBT), a type of talking therapy which looks at the connection between the way we think and the way we feel.
“The group was a lifeline really. Just to know that there were other people experiencing the same thing – it was so powerful. And I think the therapy helped me take back some control – it felt like I was being proactive instead of letting things get taken away from me. This was hugely beneficial in changing the way I was processing things at the time.”
Coping mechanisms
Julia has since taken early retirement, and spends most of her time doing voluntary work in the community. Since her experience she is keen to talk openly about her mental health.
“I’ve had a few difficult periods so far. My anxiety has become worse, which makes things like driving and shopping less easy.
"But with the excellent support and advice I’ve received I’m able to put strategies into place to make me feel better. This includes mindfulness, which helps me stay grounded. There are things which help me get back to normal as quickly as possible.”
She also has a toy poodle, Jasper. “He may have a dodgy haircut, but he helps me in so many ways. He forces me to exercise each day, which I think can be as effective as an antidepressant. Physical activity is an important part of managing my Parkinson’s symptoms.”
And what would Julia say to someone who felt depressed? “Someone close to me once became depressed and got told ‘what have you got to be depressed about?’ That sort of attitude is massively unhelpful, and really irritates me. Nobody chooses to have depression. It’s not something you can ‘just get over’.
"If you had a broken leg you wouldn’t be forced to walk on it without having it looked at or cared after. This is just the same thing. It may not be easy, but it’s important to get help and advice.”