She arrived bright and cheery and her opening line included a reference to the ‘ticking time bomb’ that is Parkinson’s, setting the scene for her lively sense of humour and no-nonsense attitude towards the condition that has already had a profound effect on her over the last few years.
Jane was diagnosed with Young Onset Parkinson’s Disease aged 49 (four years ago), but now realises she had been experiencing symptoms for a long time before… “Everybody has their diagnosis stories,” she says, going on to explain how she had struggled with creeping signs for at least 10 years.
Before she was diagnosed, Jane had joined a gym and was trying out the treadmills. She recalls trying each of five treadmills and being disturbed to find that they all had an issue with ‘catching’ on the left side. It is only looking back that she realised it was her foot that was catching and her left leg that didn’t work properly – she was ready to cancel her membership over faulty equipment.
She recalls struggling with balance: “I’d be travelling with work and standing at the top of a set of stairs with my bag and my laptop and my handbag, looking down, thinking ‘how am I going to walk down those stairs?’”. Or she’d be looking around at the women in senior positions thinking “how are they doing that? I’m exhausted just doing this.”
She explained how she had become slightly conscious that her arm was not swinging, but that she’d explained it away to herself – it was her handbag arm, after all. She described being too tired to walk the short distance for the school run: “I don’t know what I blamed that on!”
‘Grey Cloud’
It is not just the physical symptoms that have left a lasting impression from those years. Jane describes her 40s – when she had Parkinson’s but didn’t know – as having “a sort of grey cloud over them”. She realises that things weren’t right now, looking back. She explains how she didn’t go out much and realises she was ‘on a down’, finding reasons to stay inside where she could.
The eventual diagnosis of Parkinson’s meant that Jane understood that it was falling dopamine levels in her brain that were responsible for the wide variety of symptoms. Dopamine is a chemical in the body which sends signals to the brain and a loss of dopamine means the signals that control movement and mood do not work properly. Jane’s dopamine levels were dropping steadily in the run up to her diagnosis so she was experiencing a host of symptoms.
“It astounds me”, she says, shaking her head, “that I could have had all those symptoms…trying to manage work, the kids, trying to act normal – I had no idea what was going on.” It’s possible to feel the regret in her words as it’s clear she’s still processing those years.
Fighting for Fitness
There is no grey cloud over Jane any more. With a diagnosis and medication in place, she is full of life and coping well. We met through the Boxing Parkinson’s Derby Facebook Group and while there isn’t a huge online presence yet, the group itself is taking off. Jane, along with boxing coach Keith and other volunteers, is passionate about boxing. Any exercise, in fact. “The whole exercise thing has just become paramount” she states at one point in our conversation about being (or not!) an ‘outdoorsy’ type.
She was inspired by the Rock Steady Boxing movement in America but found the franchise costs too prohibitive for local people with Parkinson’s. After a trip to see what a gym in Solihull was achieving with its mixed-ability class, Jane decided boxing was definitely worth pursuing and slowly made things happen (“Everything takes a long time, galvanising myself to do anything is a massive thing” she admits). She describes Keith the Coach as a real pillar of the community, investing so much of his own time and money to help give local kids the chance to box. She explained how two coaches and Keith gave all their time for free during the successful pilot course which ran last Autumn.
The boxing sessions run on a weekly drop-in basis, with an impressive setup. They have multi-station workouts (including battle ropes, several heavy bags and a speedball), with somebody in the ring on pads. With support from a physio for the first few months and incorporating recognised Parkinson’s-specific exercise principles alongside their own research, they are able to make sure everyone (including the wheelchair user) gets a good workout.
Run, Jane, Run!
We discuss how things are now.
“Am I hyper-conscious of what’s happening to me?” she muses, “perhaps.”
Jane’s biggest challenge is the idea of a loss of cognitive functioning. She admits that she is still very much in a ‘head in the sand’ place when it comes to certain topics. Loss of executive functioning and the possibility of Deep Brain Stimulation at a later date are two of those topics.
However, for now, she is determined to focus on what she can do. Setting up the boxing group helps to ensure that the boxers get a great workout, and also fulfils a sense of purpose.
Jane is continuing to challenge herself (and her family’s morning routine!) by signing up for a Parkinson’s Triathlon in Nottingham. Her 8-week training course started this week so please support Jane if you can!
Thank you Jane for sharing your story