No one has really heard of PSP, but it's as common as Motor Neurone Disease.
PSP is as prevalent as Motor Neurone Disease but receives significantly less public awareness and recognition, with 60% of patients initially misdiagnosed. Wright's diagnosis came after four years of worsening symptoms including balance problems and backwards falls, accelerated by video documentation of his walking.
- Graham Wright, 77, diagnosed with Progressive Supranuclear Palsy in January 2025
- Symptoms worsened over four years before diagnosis; video of his walking helped neurologist identify PSP
- 60% of PSP patients are initially misdiagnosed with Parkinson's, stroke, or depression
- PSP is as prevalent as Motor Neurone Disease but receives significantly less public awareness
- PSPA is the only UK charity focused exclusively on PSP and related condition CBD
Graham Wright, 77, diagnosed with Progressive Supranuclear Palsy (PSP), is campaigning to raise awareness of the rare degenerative neurological condition that affects mobility, speech, and balance.
Graham Wright was fit enough to run, to volunteer for charity events, to move through the world without thinking about it. Then came the lopsided walk. Then the balance problems. Then the backwards falls, one after another, until four years had passed and something was clearly wrong.
At 77, Wright had spent decades in North Yorkshire living an active life with his wife Ruth. They ran together. They attended social gatherings. They were the kind of people who stayed busy, stayed engaged. But the symptoms kept worsening, and Wright kept brushing them aside. It wasn't until Ruth pushed him to see a doctor that he finally got a neurologist's referral.
The breakthrough came through something simple: video. When Wright's neurologist watched footage of him walking, the diagnosis became clear. In January 2025, he learned he had Progressive Supranuclear Palsy—PSP, a degenerative neurological condition that gradually steals mobility, speech, vision, and balance. The disease works by destroying neurons in specific regions of the brain, and there is no cure.
The diagnosis hit hard. "To go from being so fit to dealing with PSP was a lot," Wright said. "It took time for us to wrap our heads around what it meant for our future." He can no longer run. The balance problems that caused those backwards falls mean he has to move differently now, more carefully. But he and Ruth have adapted. They still get out for meals with friends who understand what's changed. They still potter around the garden when they can. They stay busy, because being busy helps them stay positive.
What strikes Wright most is how little anyone knows about his condition. PSP is as common as Motor Neurone Disease—a disease that dominates headlines and fundraising campaigns—yet almost nobody has heard of it. Around 60 percent of PSP patients are initially misdiagnosed with Parkinson's disease, stroke, or depression. The condition is incurable and life-limiting, yet it operates almost entirely in the shadows of public awareness.
Since his diagnosis, Wright has made it his mission to change that. He uses his personal networks, his professional contacts, and media outreach to tell people about PSP. He directs them to PSPA, the only UK charity focused exclusively on Progressive Supranuclear Palsy and Corticobasal Degeneration, a related condition. He shares resources. He talks about what early diagnosis meant for him—how video footage of his walking accelerated the investigation process and gave him answers instead of years more of uncertainty.
Wright is realistic about what comes next. He knows there will be a time when he can't get out for meals anymore, when the garden becomes inaccessible, when the disease takes more than it already has. But for now, he remains philosophical. "I try to be as busy as I can be," he said. By speaking publicly during Rare Disease Day and beyond, Wright is trying to ensure that the next person who develops a lopsided walk, who starts falling backwards, who feels something shifting in their body, might get answers faster. Might not spend four years wondering. Might find a community and support before the condition has already stolen years of their life.
Notable Quotes
To go from being so fit to dealing with PSP was a lot. It took time for us to wrap our heads around what it meant for our future.— Graham Wright
The prevalence of PSP is very similar to Motor Neurone Disease, so it can feel very frustrating to see so much coverage of MND, but very little awareness of PSP.— Graham Wright
The Hearth Conversation Another angle on the story
Why did it take four years for Graham to seek help, when the symptoms were clearly worsening?
He was brushing them off. That's what he said himself. A lopsided walk, balance problems—these things don't announce themselves as emergencies. You adapt. You compensate. And then one day you realize you've been falling backwards repeatedly and something is genuinely wrong. It took his wife Ruth pushing him to finally see a doctor.
The video footage seems to have been crucial. Why would watching him walk reveal something that four years of symptoms hadn't?
A neurologist knows what to look for. They see the pattern in movement that tells them which part of the brain is degenerating. But they need to see it. A patient describing their symptoms is one thing; watching the actual mechanics of how someone moves is another. It's the difference between hearing about a problem and seeing it.
Graham mentions that 60 percent of PSP patients are initially misdiagnosed. What does that mean for those people?
It means years of wrong treatment. Years of being told you have Parkinson's when you don't, or depression when what you actually have is a degenerative neurological disease. It means the window for early intervention and support closes while you're being treated for the wrong condition entirely.
He says PSP is as common as Motor Neurone Disease but gets almost no attention. Why the disparity?
MND has had high-profile campaigns, celebrity advocates, the ice bucket challenge. It's entered public consciousness. PSP hasn't had that. It's rarer in the sense that fewer people know about it, even though the actual prevalence is similar. That invisibility means less funding, less research, less support infrastructure.
What does Graham's decision to become an advocate tell us about how he's processing the diagnosis?
He's not accepting it passively. He's taking something devastating—a condition that will progressively rob him of mobility and speech—and trying to make meaning from it. If his story can help someone else get diagnosed faster, if it can direct resources toward PSPA, then the diagnosis becomes something he can act on, not just something that happens to him.
He says he remains philosophical about what's coming. Is that acceptance or something else?
It's pragmatism mixed with defiance. He knows the disease will take more from him. He's not in denial about that. But he's also saying: for now, I'm still here. I can still get out for meals. I can still be busy. I can still matter. That's not acceptance of the disease—that's a refusal to let it define every moment before it has to.