It's a life lost—not just for him, but for her too
In quiet corners of the UK, roughly 5,000 people are living with a disease most doctors have never encountered — progressive supranuclear palsy, a neurological condition that strips away movement, speech, and vision while wearing the face of something more familiar. Families like those of Gillian Manitara and Clive Hughes have learned, too late and too slowly, that a misdiagnosis is not merely a medical error but a theft of time — months and years spent treating the wrong illness while the right one advances unchecked. Their stories join a growing call for the kind of awareness that might, for someone else, make all the difference.
- PSP affects 5,000 people in the UK yet remains so obscure that six in ten patients are misdiagnosed — most often with dementia or Parkinson's — while the disease quietly accelerates.
- One in three patients waits more than a year just to see a neurologist, a delay that forecloses early intervention and leaves families adrift without answers or support.
- Gillian Manitara, 62, lost her speech and independence before her true diagnosis arrived; Clive Hughes, 77, went from leading walking groups and traveling the world to needing a wheelchair and full-time care from his wife.
- Families are not only grieving their loved ones — they are becoming full-time caregivers overnight, emotionally exhausted by years of wrong turns through a medical system that did not know what it was looking at.
- Both families have enrolled in research at Addenbrooke's Hospital and pledged brain and spinal cord donations, turning private grief into a public act of hope for earlier diagnosis.
- The PSPA charity is investing millions into research platforms, but families on the front lines are asking for something more immediate: that doctors simply know this disease exists before it has already taken everything.
John Manitara describes caring for his wife Gillian as a kind of drowning — manageable until, suddenly, it isn't. Gillian, 62, was diagnosed with progressive supranuclear palsy only in January, after years of misdiagnosis and a slow, bewildering loss of the woman her family knew. She can no longer speak or open her eyes. She needs round-the-clock care. Her daughter Anna, 26, grieves not only her mother's condition but the relationship they can no longer have — the conversations, the theatre trips, the moment she cannot share her engagement with the woman who would have been overjoyed to hear it.
PSP is a rare neurological disease affecting around 5,000 people in the UK. It dismantles balance, movement, speech, and vision — and because its early symptoms so closely resemble Parkinson's disease or dementia, it is routinely mistaken for both. Gillian's decline began in September 2022 with subtle behavioral changes her doctors attributed to menopause. A dementia diagnosis followed. It was only when she reached Dr. Timothy Rittman, a consultant neurologist at Addenbrooke's Hospital in Cambridge, that PSP was finally identified — by which point the disease had already advanced significantly.
Clive Hughes, 77, traveled a similar road. After years of symptoms initially attributed to Parkinson's, he received his PSP diagnosis in 2022. He had been living an active retirement in Norfolk — volunteering at a heritage railway, leading walking groups, traveling across four continents. Now he cannot walk unaided or manage personal care alone. His wife Barbara, who had looked forward to retirement beside him, has become his full-time caregiver. His daughter Ceri Evans calls it a life lost — and means it for both of them.
The diagnostic delay is not incidental — it is systemic. One in three PSP patients waits more than a year to see a neurologist, and sixty percent receive a wrong diagnosis along the way. Dr. Rittman, who sees up to 100 PSP patients a year, describes the clinical trap: early symptoms are subtle, the gait problems mimic Parkinson's, and the absence of a response to Parkinson's medications is often the first real clue. There is no drug that slows PSP's progression. The disease simply continues.
Both families have enrolled in research at Addenbrooke's and committed to donating their brains and spinal cords for study. The PSPA charity is investing in research platforms aimed at earlier diagnosis and better care. But the families speaking out are not waiting for a cure — they are asking for something more immediate: that the medical community learn to recognize PSP before it has already stolen everything from the people it touches.
John Manitara describes caring for his wife as a kind of drowning—you keep your head above water until suddenly you don't. Gillian, 62, was diagnosed with progressive supranuclear palsy in January after months of confusion, misdiagnosis, and the slow erosion of everything that made her herself. She can no longer speak. She rarely opens her eyes. She requires round-the-clock care.
Progressive supranuclear palsy, or PSP, is a rare neurological disease that affects roughly 5,000 people across the UK. It attacks balance, movement, speech, and vision with a relentlessness that leaves families scrambling to understand what is happening to their loved ones. The problem is that PSP is so uncommon, so poorly known even among doctors, that it masquerades as something else—usually dementia or Parkinson's disease. By the time the correct diagnosis arrives, months or years have passed. Patients have been treated for conditions they don't have. Families have been left isolated, confused, and emotionally exhausted.
Gillian's decline began quietly in September 2022. Small shifts in behavior, a distance in her manner. Her doctors attributed it to menopause. Then in March 2023, after a car accident, John noticed something deeper had changed. She seemed unreachable, as though the person he knew had stepped back from the world. Within months she was diagnosed with dementia. It wasn't until she was seen by Dr. Timothy Rittman, a consultant neurologist at Addenbrooke's Hospital in Cambridge, that the real diagnosis emerged. By then, Gillian—a former head receptionist at French Connection, a mother of two—had already begun to disappear into her condition. Her daughter Anna, 26, speaks of missing the person her mother was: bubbly, full of answers, always ready for the theatre or a gym class. Now Anna cannot share her engagement with her. The life they had together is gone.
Clive Hughes, 77, experienced a similar journey. In 2022, after years of symptoms that doctors initially attributed to Parkinson's disease, he received his PSP diagnosis. He had been living a full retirement in Norfolk—volunteering at a heritage railway, leading walking groups, traveling to India, Australia, New Zealand, the United States. His daughter Ceri Evans describes him as active, curious, fiercely independent. Now he cannot walk without a wheelchair. He cannot manage personal care alone. His wife Barbara, who was meant to enjoy retirement alongside him, has become his full-time caregiver. Clive still speaks, still remembers the life he had, but that life is gone. "It's a life lost," Evans says, and she means it for both of them.
The diagnostic delay is systemic. One in three patients with PSP waits more than a year before seeing a neurologist. Sixty percent are misdiagnosed along the way. Dr. Rittman, who sees between 80 and 100 PSP patients annually, explains the trap: the early symptoms are subtle, the walking and balance problems can look like Parkinson's, and when patients don't respond to Parkinson's medications, the penny slowly drops. There is no drug that can slow PSP's progression, though Parkinson's medications sometimes help. The disease simply advances, taking speech, vision, swallowing, and mobility in its wake.
Gillian and Clive are now part of research efforts at Addenbrooke's Hospital. Both families have committed to donating their brains and spinal cords for study. James Cusack, chief executive of the PSPA charity, which supports people living with PSP and related conditions, points to the brutal arithmetic of ignorance: most people have never heard of PSP, including some healthcare workers. That lack of awareness has consequences that ripple through families. People don't get timely diagnoses. They don't receive the support they need. The charity is investing millions into research platforms designed to improve early assessment and treatment. But the families calling for change know that research takes time, and their loved ones do not have time to spare. What they want now is simple: for doctors to know what PSP is, for families not to spend years in the dark, for the disease to be recognized before it has already stolen everything.
Citas Notables
It's sink or swim but at times you feel like you're drowning— John Manitara, on caring for his wife with PSP
When people have the combination of those early subtle symptoms it can be hard to pick up... people often have a diagnosis of Parkinson's disease and when they don't respond to the treatments, then as the penny drops we realise it could be PSP— Dr. Timothy Rittman, consultant neurologist at Addenbrooke's Hospital
La Conversación del Hearth Otra perspectiva de la historia
What strikes you most about these families' stories?
The gap between what they expected and what arrived. Clive had a whole retirement planned—travel, volunteering, independence. Gillian had a daughter getting engaged. Then PSP erases the future they were living toward.
But they're participating in research now. Does that feel like hope?
It's complicated. Yes, they're contributing to something that might help others. But they're also donating their brains because they know the disease will take them. There's a kind of acceptance in that—maybe even dignity—but it's not the same as hope for themselves.
Why does misdiagnosis matter so much if there's no cure anyway?
Because a wrong diagnosis means wrong treatment. You're taking Parkinson's drugs that don't work. You're being told you have dementia when you don't. You're isolated because you don't know what's actually happening to you. And your family is isolated too—they're grieving someone who's still alive.
The article mentions that 60% of PSP patients are misdiagnosed. That's a staggering number.
It is. And it means the disease has already progressed by the time anyone gets it right. You've lost months or years. For a condition that's progressive and incurable, time is everything.
What would change things?
Awareness among doctors, first. If neurologists knew PSP as well as they know Parkinson's, they'd recognize it faster. And families wouldn't spend years thinking their loved one has dementia when they actually have something else entirely. It's not a cure, but it's the difference between being lost and being found.