Despite the demands of running two youth charities full-time and caring for his wife, Gillian, John Manitara is a man on a mission.
Driven by love and a firsthand understanding of the gaps in the system, John is determined to improve awareness and support for the PSP & CBD community.
Here, he shares his motivation and how they continue to find light in the everyday.
“Gillian and I met at university and have been together for over 44 years. We raised our family, watched our children grow into their own lives, and spent years dreaming of our future. We used to watch ‘A Place in the Sun’ and plan how I’d step back from work so we could travel and enjoy a long retirement abroad.
“In 2023, those dreams shifted. After Gillian began experiencing personality changes and frequent falls, a diagnosis of Progressive Supranuclear Palsy (PSP) was confirmed at Addenbrooke’s. We had never heard of the condition before, and hearing that it was terminal was a shock. Gillian has deteriorated quickly; she now requires 24/7 care and has lost much of her speech and mobility. I miss her blue eyes, which are often closed now, and the simple daily ‘chit-chat’ we used to share.”
“I tried to cope alone for as long as possible, but the administrative mountain of securing equipment and benefits was exhausting. The delays in diagnosis and the constant chasing of services take away the one thing we don’t have enough of: time. Every hour spent on the phone chasing a recliner chair or another item of equipment is an hour I could be spending with Gillian.
“Securing professional care support a year ago has enabled me to keep working; Greencare have been amazing. I still get a real buzz from the difference we make through the charities; it maintains my identity outside of the home and truly keeps me going. Despite the challenges, we still make sure to enjoy moments of joy every single day.”
“Family remains at the heart of our lives. With our son and daughter both getting engaged to their respective partners last year, we have two weddings to look forward to, even though it piles on more pressure to juggle work and caring. We’ve also adapted how we spend our time together. Since Gillian loves afternoon tea, friends will often bring a spread to the house. Eating is much slower now, sometimes taking two hours, so being in a relaxed home environment is much easier than a restaurant.
“Because Gillian’s eyes are often closed, we don’t really watch television anymore, but we’ve returned to the music we bonded over at university. When we have quiet time, I’ll put on some 80s tracks, and we just listen together. Our two cats bring so much value to our lives, too. They have such distinct characters, and they know I’m a soft touch. Sure, I’ve lost weight because I’m always sharing my food with them. KFC is their absolute favourite treat.”
“More recently, we’ve taken great pride in representing the PSP & CBD community. Following a TikTok post my daughter Anna shared, we’ve been interviewed by the BBC for Look East, BBC Essex Radio, BBC Five Live and their website, talking about our reality. I am determined to make a difference because I don’t think people realise the impact that delays in diagnosis and funding have on a family.
“Time is of the essence for us now. I want to spend my spare time with Gillian, creating memories and ensuring she is comfortable, rather than battling for basic support. I wouldn’t have known about half the services available if it weren’t for PSPA’s Carer Support Groups. They were there to point me in the right direction, and now that I’m more used to the routine, I’m able to give back by sharing my own insights too.
“We even had the honour of representing PSPA at the Royal Garden Party in May. It was an amazing day, and Gillian was smiling the whole time. I managed to find a few helpful people to ensure she could enjoy as much of the afternoon tea as possible. We didn’t spot the Royal Family in the crowd, but just being part of the day and representing this community was enough.”
