Frustrated by the delays and still without answers, Jane decided to seek a private consultation. She secured an appointment with a private neurologist within a week, a stark contrast to her previous NHS waits.
When Jane first began to experience unexplained falls, her GP referred her to NHS Ear, Nose and Throat specialists. When those investigations didn’t reveal a cause, she was sent to Podiatry, and later to Neurology when professionals suspected Parkinson’s. Each time she was referred to a new service, she faced a waiting time of around seven months.
Frustrated by the delays and still without answers, Jane decided to seek a private consultation. She secured an appointment with a private neurologist within a week, a stark contrast to her previous NHS waits.
In 2025, Jane was diagnosed with Parkinson’s and initially felt hopeful. She knew some medications could help, and she looked forward to regaining the strength and mobility so she could get out and enjoy walking again, something that had become an essential source of therapy and social connection since her husband died three years earlier.
However, when Parkinson’s medication didn’t make any difference, further investigations began. After 18 months of appointments, referrals, and uncertainty, Jane finally received a diagnosis of PSP in February 2026.
“It’s quite a frightening diagnosis to receive, especially when you live alone,” Jane explains. “Within a relatively short period of time, I’ve gone from being very independent and active to relying on family and friends for support.”
Jane is currently living in rented accommodation while essential works are completed on her home ahead of selling it. “My balance and mobility aren’t what they used to be, so I need to find somewhere that will suit my needs better. Around Easter, I plan to visit some assisted living properties so I know help will be on hand if I need it.”
Beyond the practical challenges, Jane has also found the condition quite isolating.
“I’m lucky my daughter lives close by, I see her most days, and she takes me out every weekend, so I get a good airing. I see friends about once a week, too.”
But one of the hardest losses has been giving up the independence of walking her dog. “After my husband died, walking became my therapy, getting out, chatting to others.”
Reflecting on her situation, Jane says, “I find it sad on days like yesterday, when the sun is shining, but I can’t go out unassisted, so I’m stuck inside. Adapting to needing support with so many parts of my life is difficult. And knowing there isn’t anything that can improve my condition, it’s a lot to take in and deal with alone.”
