After years of walking and traveling together, Christine found herself thrust into a role caring for her husband, Tony, as undiagnosed Progressive Supranuclear Palsy (PSP) symptoms changed his personality and daily life. Here, Christine shares her experience of Tony’s diagnosis, progression, and final years.
“Tony’s active, adventurous side, walking, and sailing, was what attracted me to him all those years ago. We walked the Yorkshire Moors at least once a week, chatting and laughing as we went.
But during 2018, Tony’s personality subtly shifted. By the end of 2019, his bright, beautiful voice faded to a quiet whisper.
Our journey into the healthcare system immediately exposed a lack of professional awareness regarding atypical neurological conditions. A GP referred us to ENT, where Tony was promptly discharged with a clean bill of health. As a former nurse, I recognised that his falls, impulsivity, and reduced hand dexterity pointed to something neurological.
I pushed for a neurologist referral in June 2020. It took until October to get a phone call, and until December for an appointment. This agonising delay was compounded by misdirection when the neurologist initially discharged Tony, claiming it was likely just depression. Unwilling to accept this, I booked a private appointment with a movement disorder specialist. The moment we walked through the door, the specialist recognised PSP, a diagnosis later confirmed by a DaT scan.
While the system dragged its feet, my life was upended. Tony had always been the organiser who looked after me; being suddenly thrust into the primary decision-making role was a steep, daunting learning curve.
By late 2020, I was utterly exhausted. I had to watch Tony constantly to minimise harmful falls, down the stairs, out of bed, or just from standing. Our beloved walks became terrifying ordeals because his impulsivity caused him to blindly run down big hills. In March 2021, we moved to a bungalow in Burnley to move away from the moors and be closer to my son, Ben, whose support became my lifeline.
Getting a diagnosis didn’t mean getting help. The rapid progression of PSP consistently outpaced the slow-moving nature of service and equipment provision. Six weeks after our community support referral, I chased the Parkinson’s Nurse only to find out none of the paperwork had been actioned.
Physio and speech therapy referrals were actioned by the Parkinson’s nurse, but the latter exhausted Tony so much that his communication worsened the next day. Tragically, some of our friends dropped away because they couldn’t understand him or couldn’t bear to see his decline. Our world became much smaller. But our best friends and family were constant support.
When Tony’s mobility sharply declined in late 2023, we ordered a wheelchair. It took six months to arrive, forcing us to borrow and hire chairs in the interim.
Every time Tony’s needs increased, I was forced back into a constant, exhausting admin cycle of re-referrals.
Desperate for a break, I self-funded care to take a holiday and arranged residential respite. Yet, the lack of PSP awareness followed us. Despite being given PSPA publications, respite staff struggled to manage his symptoms, so he faced constant chest infections and UTIs.
As Tony’s swallowing deteriorated, he decided to have a PEG feeding tube inserted. The procedure knocked him for six; he never fully recovered.
Relief finally came through the local frailty and advanced planning service. With a named coordinator, the fighting stopped. Services just happened whenever I flagged a decline. The hospice was equally wonderful, providing day centre activities Tony loved and compassionate “hospice at home” care at the end.
Tony was desperate to help uncover more information about PSP and was disheartened by the lack of local clinical trials. But when he peacefully lost his fight at home in March 2026, he fulfilled his wish of helping by donating his brain to research.
There were so many ups and downs during Tony’s six years living with PSP, the most frustrating being the admin and constant chasing of services and equipment. But looking back, I am so glad that for as long as we possibly could, we kept walking and travelling, clinging to the adventures that brought us together in the first place.”
