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Gemma’s story

“I hope in the future research studies will enable PSP to be diagnosed early and for a form of treatment to help improve quality of life.”

Gemma Thornton noticed small changes in her dad a couple of years before regular falls led to a Parkinson’s diagnosis. A diagnosis of PSP followed after the Parkinson’s medication failed to make a difference. Here Gemma shares her family’s experience of PSP and their hopes for the future.

“Dad was a kind man. Quite quiet but he also mixed well with others. He had a good sense of humour and was known for his sarcasm. He was a family man and a very ‘hands on’ dad. He worked all his life and retired early but he was hardworking and was never one to take time off really.

Dad was very protective of me and my sister. He filled in his time walking, visiting markets and in more latter years, he spent time with his sisters. He loved his food and was happiest when eating!

Previous to dad’s falls beginning in June 2021, I already had noticed a few changes in 2019 and maybe a little earlier. Dad’s eyelids would drop involuntarily and he started to stoop and shuffle in relation walking. He would remain quiet a lot and also socially would do things he wouldn’t usually have done. His behaviour was changing all the time, I remember thinking it may be an early onset of Dementia.

Dad fell in June 2021 at home. He had no recollection of the fall and could not tell me or my sister how it happened and it was a pretty awful fall that led to him being hospitalised. In hospital, they instantly noticed dad had Parkinsonism behaviours and symptoms and started him on the drug called Levadopa.

When dad returned home I was made redundant and decided to take a part time position to help him out a bit. He was not managing with his medication and losing the ability to do small tasks around the home, it’s like the fall had opened up dad’s disease and made it progress more rapidly.

We realised the medication wasn’t working, he wasn’t feeling any better and he was frustrated. It was an exhausting time, he heavily relied on me to sort his medical appointments as his eye sight seemed to be failing more and he was experiencing double vision.

Dad started fall excessively and he ended up in hospital again. They had begun to lower his dose of medication and was going through motions of old age psychiatry. It was at this point they began to suspect PSP.

My parents were not together but my Mam helped me support my dad a lot. She could not believe what had happened to dad. His whole body was failing him. Watching dad change was hard. Some people are very understanding and helpful but at times his erratic behaviour was difficult.

My lovely dad passed away at the age of 75 after experiencing aspiration pneumonia.

I hope in the future research studies will enable PSP to be diagnosed early and for a form of treatment to help improve quality of life. I would also love for there health care professionals to be trained with specific knowledge of PSP and how to care for someone at different stages.”

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