John Manitara, 62, from Essex, is grieving the loss of his wife Gillian, 62, who has progressive supranuclear palsy (PSP), a rare and fatal neurological disorder. John, founder of a community interest company and charity, said: "It's like waking up to a living nightmare each day. Her love is there, but everything else feels lost." He added that he wishes he could swap bodies with her rather than watch her suffer.
Early Symptoms Mistaken for Menopause
Gillian, a former receptionist for French Connection UK, began acting out of character in late 2022. She experienced falls, irrational and impulsive behaviour, such as disappearing to buy something without telling John while waiting for a train, and nearly falling for phone scammers. John initially thought it was menopause. In May 2023, she had a car crash with no other vehicle involved and appeared dazed. John said: "Her reaction was low key and almost nonchalant. She seemed so oblivious and like a lost soul."
Diagnosis of Progressive Supranuclear Palsy
In autumn 2023, Gillian was initially diagnosed with dementia, but this was corrected to PSP in early 2024 as her condition rapidly declined. PSP is caused by a build-up of the protein tau, damaging brain cells and causing balance issues, cognitive impairment, and movement difficulties. It progresses faster than Parkinson's disease and has no cure. John said: "Almost overnight, she became unfit to work and required supervision. She needed help with everyday things like cooking, washing, and cleaning." He recalled dangerous incidents: "Gillian left the taps running and the gas on. Eventually, she fell when getting up at night and couldn't bathe or dress herself."
From Husband to Carer
John said: "I went from being her husband to becoming her carer. It was devastating." Those with PSP typically live around six years from symptom onset. The family fought for support, which arrived late. John said: "I was at the end of my tether when we finally received the support required. Time isn't something we've got." Their children, Andrew, 32, and Anna, 26, miss their mother. Anna said: "One of the hardest parts is grieving the mother-daughter bond. I listen to old voice mails or read old text messages to feel close to her again. Every time I see her, I want to wake her up from this cruel illness."
Weddings and Heartbreak
Andrew is getting married this year, and Anna next year. John said: "Gillian will attend our son's wedding, but sadly not our daughter's. It's unlikely she will be around then. We took her wedding dress shopping for Anna. She gave a thumbs up and we all cried." John added: "I miss hearing her lovely voice and chatting about everyday things. I feel I have lost my partner and soulmate."
Raising Awareness
John is determined to raise awareness of PSP. He said: "I feel lost and empty, but I am determined to raise awareness, despite it being too late for my Gilly. Life can be cruel, but our love is eternal." Gillian now needs 24/7 care, is fed pureed food to avoid choking, and is almost in a vegetative state but still responds with smiles.
