Today, as we all mark one year since the country first went into lockdown, we meet another of our Big Walkers who, after being forced to postpone a lifechanging move because of the pandemic, is now striding out to raise funds and awareness about Huntington’s disease.
On this day last year, Jessica Rowley was all set to head up to Scotland from her home down south. The lockdown announcement meant a last-minute delay to her travel plans and Jessica was finally able to move to Edinburgh last summer to start work as a waitress in the capital’s busy hospitality sector.
Then soon after she arrived, Jessica found herself on furlough from her new job – so she decided to embark on a different adventure by stepping out every day to help other families in the HD community.
“I’ve always known about Huntington’s disease, my gran had it and she died before I was born. I was 14 or so when my mum, Sam, had her test, and in November 2019 I found out that I also have the gene that leads to the disease,” said Jessica, 28.
“Mum and my dad, Steve, have always been open about it and now that Mum has symptoms, I see changes in her personality and what she’s able to do. She’s more forgetful and has mood swings, something as simple as not being able to put on her make-up because her hands are shaking can be really upsetting.
“It’s my dad I worry about the most. It takes incredible strength to watch someone you love starting to change because of the disease but he handles it really well. It’s heartbreaking and inspiring at the same time.
“I couldn’t handle not knowing, I felt I had no control and couldn’t plan anything. I lived in Bristol then and I kept my family at arms’ length throughout the testing process. I didn’t want to worry about their reactions, it had to be about how I felt so my best friend came with me.
“Then, the day after I got my result, I went home because that’s where I wanted to be. I have a consultant in Bristol who still calls me and I’ve had great support from her, my family and friends. Now that I’m living in Scotland, I want to get involved and find out more about the support here, including from SHA.
“That’s how I found about SHA’s Big Walk. It’s kept me sane during lockdown. Because I’m new to Edinburgh, it’s a great reason to get out and explore the city. Arthur’s Seat is on my doorstep, and I’ve made it half-way up. Come summer I’ll get to the top.
“I try to do at least 5k a day, I want to be ahead of schedule and I’m sticking to that even when my legs hurt! My friends helped with the sponsorship side, and I set up a JustGiving page. Soon friends and family were donating and before long we’d raised £700! Knowing donations are coming in helps to keep me on target.
“To be honest it’s been hard since my test result, everything shifted the day I found out. I thought I was fine at first but, in reality, I was grieving for the life I thought I was going to have.
“Now that some time has passed, I focus on every day, making plans and setting myself goals. I’m building myself up to be strong – it’s an ongoing project but walking every day and knowing that I’m helping other people in the same situation really helps.”