Source: BBC
Gillian, 62, of Roydon, Essex, was diagnosed with progressive supranuclear palsy (PSP) in January 2024, leaving her unable to communicate and she rarely opens her eyes.
PSP affects about 5,000 people in the UK and causes problems with balance, movement, speech and vision.
John, also 62, says a lack of awareness about PSP means the condition can be misdiagnosed as dementia or Parkinson’s disease, with patients and their families left confused and isolated.
Gillian’s family began to notice small changes in her behaviour in September 2022.
John says at first the changes were attributed to the menopause, but in March 2023 he noticed his wife had become more irrational and did not react as expected when she had a car crash.
“She just seemed different and distant in some ways from how she would have reacted,” he says.