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Denise’s story

“I know research is the only way we will better understand the conditions, the symptoms and how they progress.”

Denise’s mum was an extremely busy and active person before she became ill and it took four years to receive her PSP diagnosis.

Here Denise shares details of her mum’s diagnosis journey and why supporting PSPA research is so important to her.

Denise said:

“I’m sure many of you will be able to relate to research statistics which highlighted 50% of people living with PSP & CBD receive a delayed diagnosis. I know I can.

“My 83-year old mum was diagnosed with PSP in June 2018. It took over four years; numerous GP visits and hospital appointments, two MRI scans, a lumber puncture, a brain shunt procedure and a back operation, to get to that point.

She continues:

“Mum was an extremely busy and active person, so when she started experiencing back pain in 2014, we thought it was just a trapped nerve. But when the dizzy spells began, we headed to the GP.

After ENT and orthopaedic investigations failed to identify any issues, the GP referred mum to an elderly care physician. He suspected Normal Pressure Hydrocephalus. Initially, draining fluid from mum’s brain seemed to help, so mum was referred to a neurosurgeon to have a shunt fitted. Mum then had a back operation to release the suspected trapped nerve, but mum still didn’t feel better.

Mum’s PSP diagnosis finally came in June 2018 after she had a really nasty fall and ended up in A&E.

Like most people, we’d never heard of PSP before mum received her diagnosis. It was a relief to finally have an answer, but it was also a huge shock to find how little known the condition was, even within the medical community.

Greater awareness of PSP & CBD would have given mum a diagnosis much earlier.

Earlier diagnosis would have meant fewer referrals, less appointments and more time together. Time to build lasting memories before mum’s mobility became too poor and she had to move into a care home to meet her changing needs.

As soon as my mum was diagnosed, I began raising awareness of PSP & CBD and donating to PSPA research.

I know research is the only way we will better understand the conditions, the symptoms and how they progress.

Sadly, mum passed away last summer, and even though mum is gone now, I feel, through my awareness raising and donations to PSPA’s research, I am part of a collective effort to create a better future for everyone affected by PSP & CBD

Learn how you can support PSPA Research this summer, here.

2022 Research Appeal

“For me, living well is about being able to be independent for as long as possible.”

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PSPA Funded Research

Research that has been awarded a PSPA Grant or Fellowship

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