Jackie shares how she began facing up to her Parkinson’s diagnosis and in the process, has reminded herself what she is still capable of.
"When my consultant told me I had Parkinson’s, I truly believed my life was over,” remembers Jackie, who was 56 at the time. “I was handed a prescription, advised to exercise and sent on my way. In reality, I had no idea what to do next, which way to turn or how or what exercise I was supposed to do.
“I was devastated, I was scared and I felt very lonely. I had never been ill before so it all felt very overwhelming,” says Jackie. “I remember at that first appointment, I sat under a whiteboard in the waiting room which said ‘Parkinson’s nurse clinic’ and I just thought, ‘This is me now, I’m a patient.’”
I started to think that perhaps if I could set myself a monthly challenge it would serve as a positive focus, a reminder of living for today and what may be possible – and that’s how it began, this new life of mine.
When Jackie was diagnosed, a friend recommended Jackie might benefit from seeing a private neurophysiotherapist, who could help to improve her balance, mobility, core strength and general fitness level.
“I’d been trying to cope with everything, but really, I was very broken,” admits Jackie. “It felt like after my diagnosis nobody gave me anything positive to hang on to. But in my very first appointment with my physio, he told me I had a future – perhaps not the future I had planned, but I still had a life to lead.
“I’d been seeing him for about 6 months when he pointed out to me I was so focused on what I couldn’t do, I was missing out on what I could – he even told me I could climb a mountain if I wanted to.”
This conversation proved to be a turning point for Jackie. A friend had always wanted to climb Snowdon in Wales, so Jackie agreed she would try and do it with her.
“To my surprise, I found I really enjoyed the training,” says Jackie. “And the fitter I got, it felt as though I was taking back some control over my physical limitations. This helped boost my confidence and improved my overall wellbeing.”
Almost a year to the day after being diagnosed with Parkinson’s and with the help of a guide, Jackie successfully climbed Snowdon. The sense of achievement was huge.
“When I was diagnosed, I told my consultant that I walked everyday in local woodlands. He was horrified and told me I had to avoid uneven ground as I was a ’high falls risk’. And now here I was, having just climbed a mountain!
“I started to think that perhaps if I could set myself a monthly challenge it would serve as a positive focus, a reminder of living for today and what may be possible – and that’s how it began, this new life of mine.”
Facing the fear
“For me, I need to deal with the fear which can overwhelm me with Parkinson’s head on,” says Jackie. “So I like to take on activities that directly challenge the restrictions Parkinson’s tries to impose on me.”
Jackie’s stability can be affected, so she completed a high-ropes course. Her symptoms get worse when she is cold, so she went wild water swimming in a freezing Scottish loch, and to tackle her balance issues and problems with performing repetitive movements, Jackie tried stand-up paddle boarding. She loved being on the water so much it’s since turned into a hobby.
Jackie has also been paragliding, rode pillion on a motorcycle and tried horse riding. “The latter terrified me the entire trek, but I survived to tell the tale!” she laughs.
“Although most of the challenges are very physical, the psychological benefits are paramount. They help me feel that I’m not defined by my diagnosis – that I’m capable of fighting back and not giving in.”
But perhaps Jackie’s biggest hurdle is being able to tell people she has Parkinson’s.
I’m still selective about who I talk to and what information I share with people...I just don’t want anyone looking at me differently. I’m the same person I’ve always been – just with a little extra burden.
“After the diagnosis, I didn’t want to tell anyone,” says Jackie. “All that was going round in my head was, ‘How has this happened?’ Perhaps I was too wrapped up in myself, but I thought it was my story to tell. And I felt embarrassed, which I’m ashamed to admit now.”
The first time Jackie started talking more openly about her condition was just under a year after she was diagnosed, when she went on a local radio station to talk about her Snowdon climb as part of a fundraising effort. 3 years on from her diagnosis, opening up is still difficult for Jackie.
“There have only been 2 occasions when it came out easily. When I did the high-ropes course, I was standing on a platform waiting for my instructor to get to where he needed to. I said to the man behind me that I had Parkinson’s and he just said, ‘Well good on you for doing this.’ Another time I was paddle-boarding and mentioned it to someone who was with me.
“I’m still selective about who I talk to and what information I share with people,” admits Jackie. “People can be intrusive, but I am learning that people are not shocked or horrified by the news.
“I just don’t want anyone looking at me differently. I’m the same person I’ve always been – just with a little extra burden.”
As Jackie continues to set targets for herself, she reflects on what these challenges have given her. “I have met so many wonderful people who have helped and supported me and I’ve had experiences I’d never have contemplated before Parkinson’s.
“If I think about the future too much, I can get into a spiral of negative thinking. But when things get bad I remember what I’ve achieved and those who have helped me get there, and I plan what to do next.”
Jackie adds: “I take each day as it comes, but I know I’m going to be OK. I have a future. Everything is not over and I can cope.”