After living a healthy and active lifestyle for many years, it was a shock when Graham Wright was diagnosed with PSP in January 2025. Once the shock subsided, Graham and his wife, Ruth, set about preparing for the future and upholding relationships to keep them busy and positive.
“I’ll admit I had probably been brushing off some of my initial symptoms for much longer than I should have. I developed a bit of a lobsided walk and balance problems, both which led to numerous backwards falls.
After around four years of living with these progressing symptoms, my wife finally pushed me to go to my GP and get things sorted.
I received a direct referral to a neurologist and appointments lined up quickly. I think my GP sending the neurologist a video of me walking, perhaps aided this. My PSP diagnosis came within weeks of being moved to a specialist Parkinson’s team at the hospital and after the results of some scans.
The diagnosis was quite a shock. Up until around 2000, I had been a very fit and active man. I ran regularly, not just on my own, but also weekly with a group. With one friend I often took on a running challenge like the Great North Run, to raise funds for charities. To go from that to the debilitating symptoms and diagnosis, was a lot. Initially it was difficult and took some time for us both to wrap our heads around what PSP was and how it would impact our lives.
Once the shock had subsided, we set about planning for the future. Already being cared for by a healthcare team that has good knowledge of PSP really helped this to progress fast. It took just weeks to have assessments with physios and OTs in the team, who suggested the right aids and adaptations for me and how my PSP is likely to progress.
I now use a walking stick to give me a little more stability. And we’ve moved our house around, transforming our dining room and summer room into bedrooms downstairs and investing in a wet room on the ground floor too.
I am not currently at the stage of needing to use the downstairs facilities, I can still currently make it up to the bedroom and bathroom safely. But it is reassuring to know things are in place, as and when I need them.
I couldn’t possibly run now my balance is so bad, which is sad, but I keep busy. Being busy helps us to remain positive and uphold social connections with our friends and family. Things are just at a different pace now. I do stay in touch with one friend from the running group, this helps me to maintain a good friendship and stay up to date with news from the group. We eat out with friends we know well, people I am comfortable seeing the changes in me that are occurring. And family visit regularly too.
I also do enjoy my garden still. I do have a gardener come in to help with the bigger maintenance jobs now, but I do the smaller ones, potting and repotting plants and vegetables, watering, that sort of thing. Tasks that sometimes frustrates my wife – as I can be out in the garden for hours! Falling can still be a problem; I fell backwards a couple of times this summer. But the sunny weather this summer has enabled me to be in the garden a lot which I find uplifting.
I know things will change, that there will come a time I can’t get out for meals or potter around the garden, but for now I try to be philosophical and remain as busy as I can be.”
Keep reading more personal experiences like Graham’s below.
