"This is going to change my life"
How a Supported Journey with Lothian has given Graham a new lease
In 2015, Edinburgh resident Graham noticed he had “slowed down” a bit and was struggling with some new aches and pains. His wife had also observed a tremor in his left hand and they decided it might be best for him to visit his GP. That visit led to Graham being diagnosed with Parkinson’s disease at just 55-years-old.
Parkinson’s is a condition in which parts of the brain become progressively damaged over many years. The most common and well-known symptoms of Parkinson’s are muscle tremors and rigidity which cause difficulties in walking and carrying out everyday tasks.
Prior to his diagnosis, Graham was a passionate runner and was very active, having run in the Edinburgh Half Marathon and climbed Ben Nevis. “I enjoyed my weekly 5K Parkrun,” Graham recalls, “and I ran everywhere in those days. I’d run to the gym, go for a workout, and then run home!”
Less well-known, perhaps, are the hidden symptoms of Parkinson’s which often have a significant impact on the person’s life. These include a person’s decision-making abilities, their understanding and cognitive processes, and unpredictable mood swings.
Even in the 5 years following his diagnosis, at the beginning of 2020, Graham was still relatively active. He only used a walking stick to help with his balance, and he was still able to drive independently. However, over the next few months, Graham developed a chest infection and found himself spending the summer in hospital.
When he was declared fit enough to leave hospital and returned home, he felt his condition had worsened dramatically.
“When I was discharged, I felt like my Parkinson’s had progressed by 10 years” Graham said.
By the summer of 2021, he found himself only able to walk short distances and he became increasingly reliant on his walking aid. He had to purchase an electric wheelchair for longer journeys and was now no longer able to drive. He had been given a National Entitlement Card (NEC) when he was first diagnosed, but hadn’t used it in the 6 years since then. Now – with his wife often unable to drive him due to work commitments – he decided that would soon change.
He reached out to Lothian with his concerns about using a bus for the first time as a new powered wheelchair user in an email to our Customer Support team. Our Accessibility and Inclusion Officer contacted Graham to discuss his concerns, and it was felt he might benefit from a Supported Journey. Supported Journeys allow customers to meet with a knowledgeable and experienced colleague from Lothian in order to share a bus journey together; together, they can identify any potential barriers facing the customer, and appropriate support and advice can be offered.
Our services are for everyone and Lothian wants all customers to feel confident in using them.
Olivia (Lothian’s Accessibility and Inclusion Officer) met with Graham to board a service on his powered wheelchair, and was struck by his enthusiasm for getting out and about again.
This initial journey was quite emotional and eye opening for Graham: “This is going to change my life”, he said afterwards.
“Olivia was very patient, and made me feel comfortable getting on the bus,” he said. “Just having her next to me was reassuring, and once I was actually on the bus, I was at ease chatting away to her.”
Since that first Supported Journey with Graham in August 2021, he’s now able to use his walking frame to catch a bus every week to attend a community café at his church and has also made a number of journeys – both independently and with his wife – to meet friends for coffee.
“That first Supported Journey really was a lightbulb moment for me,” he said. “It let me know I can get on the bus myself and get out there again.”
Due to the nature of his disability, there are still days when Graham struggles. “Most days I can use the TfE app without an issue but some days my brain is unable to process the information and I’m left anxious and stressed. Unfortunately, as this is part of my condition, I can sometimes forget simple things.” On one occasion, he forgot how to reverse his wheelchair on the bus which made him freeze up. “It was very embarrassing,” he said, “but the driver was amazing, and gave me plenty of time to collect myself and refocus.”
It’s reassuring experiences like this that have given Graham his freedom back. “It’s the one email I’m most thankful I sent,” he said.
If you or someone you know has a disability and you think they would benefit from a Supported Journey, or if you are part of an organisation and would like to book a Try a Bus Event – which are designed for groups of individuals with accessibility requirements – please contact our Accessibility Team by emailing [email protected].
Our thanks go to Graham for sharing his experiences with us.
Lothian remains committed to providing an efficient, world class bus service for the people of Edinburgh and the Lothians. Within that commitment, we reiterate that our buses are accessible for everyone. We would like to remind customers that not all disabilities are visible, and for a variety of reasons some of our customers cannot wear a face mask during their essential journey. Please be kind and considerate while on our buses.
Thistle Assistance is an initiative to help you feel safer and more comfortable when using public transport. You may prefer more time to get to your seat, or you may like your driver to speak more slowly and clearly. Thistle Assistance’s card and app let transport staff know in an easy and subtle way what extra support you’d like. Visit the Thistle Assistance website to find out more.
To learn more about Parkinson’s disease, visit NHS Inform’s website.