Imagine facing daily public transport journeys while worrying strangers might mistake your medical condition for intoxication. This is the reality for Ben Gee, a 47-year-old from Berkshire, who received a Parkinson's disease diagnosis at just 41.
The Hidden Struggle of an Invisible Condition
In the UK, a person receives a Parkinson's diagnosis every 20 minutes, with approximately 166,000 people currently living with the condition. This progressive neurological condition, caused by nerve cell damage that reduces dopamine levels in the brain, manifests through more than 40 potential symptoms. Each individual's experience differs significantly.
Ben Gee exclusively shared with the Mirror: "A lot of the symptoms that I demonstrate - hand and leg tremors on the right side of my body, insomnia, stiffness and anxiety - people wouldn't necessarily associate the condition with me."
This lack of public understanding creates significant challenges. Research conducted by Trainline reveals that over half (54%) of people surveyed feel unsure about identifying Parkinson's symptoms, while only 15% feel very confident in recognition.
The Anxiety of Being Misunderstood
Ben describes the constant self-consciousness that accompanies his travels: "I'm very conscious of my shaking, and I'm always conscious of what people are thinking. Do they think I've had a drink in the morning? Do they think I'm nervous around them, or just a nervous traveller?"
The data supports Ben's concerns. Trainline's research found that just under one in five (18%) people could recognise slow movement or unsteadiness as a potential medical condition. Alarmingly, nearly one in ten admitted they might mistake Parkinson's symptoms for something else, such as intoxication, due to tremors, slower movements, or balance issues.
Ben elaborated on the emotional toll: "When I'm travelling and it's busy, there are times when I can see people's eyes on me, I can feel them looking at me. You just want to say, 'It's ok, guys, I've got Parkinson's, there's nothing wrong with me'. It's knowing people are looking at you and not knowing what they're thinking, that's what I found challenging."
A Simple Badge Making Rail Travel More Inclusive
To address these challenges, Trainline has partnered with leading charity Parkinson's UK to launch an innovative campaign. They've developed free, purple badges bearing the powerful message: 'Patience please, travelling is challenging for me.'
The initiative aims to help those with Parkinson's feel more confident using public transport while raising awareness among fellow passengers. The campaign responds directly to research showing that 55% of people surveyed said wearing a visible badge would make them more likely to offer help.
Ben, who regularly travels by train and finds standing for long periods difficult, welcomes the initiative: "I'll be wearing the badge when travelling. It gives you the confidence, and this idea of giving people around you permission to understand, give you a bit of time or talk to you. It's a great thing to wear."
He explained the badge's subtle power: "This badge gives them the reassurance that there's a reason behind my symptoms. It doesn't mean they have to do anything. They might not have to do anything or say anything. It takes that anxiety away from other people so they can see that I might need a bit more time, I might need a seat, whatever it may be."
Sarah Helppi, UK Country Director at Trainline, stated: "There is a growing need to recognise those travelling with accessibility needs, especially less visible conditions which might not be immediately apparent during everyday travel. We have worked closely with the team at Parkinson's UK and the broader Parkinson's community to develop a travel aid that enables those with Parkinson's and others to signal their needs."
The badges are available for free on the Parkinson's UK website and are offered to anyone who might benefit, not just those with Parkinson's. Additionally, Trainline is offering £10 off train travel to 500 people living with Parkinson's disease, further supporting the community's mobility and independence.
