Marathon for PSPA - Terry Stout

Hi there, I'm Sam and on November 26th 2023 I will be running the Firenze Marathon in Florence, Italy. I would love for more than personal gain to come from this, and so, I want to raise funds for a cause close to my and my family's hearts.

A couple years ago Terry Stout, my mum's partner, was diagnosed with PSP and CBD, only a year after retiring from his career in Oil & Gas. Since then, Terry and my mum have truly had their world flipped upside down. I want to raise money for the PSP Association, a charity aimed at conducting essential research into this life changing disease.

Besides raising funds, I want to raise awareness. Specifically, I want to share the impact the disease can have on someone's life. This is with the hope that an increased awareness might lead to improved support and an eventual cure. Below I will share Terry's story, and some more info on PSPA.

Terry's Story

May 2020, Terry had taken early retirement after working more than 35 years in the Oil and Gas industry. He was looking forward to a new life in his new home in the countryside with his partner Susan. Shortly after moving in to their house, friends spoke to Terry of their concerns about the changes they saw in him, especially in his speech. After a GP referral to a neurologist there followed a year of dementia assessments, blood tests, scans, intravenous antibiotics and spinal taps. Finally in June 2021 Terry was given the life changing diagnosis. He had Progressive Supranuclear Palsy and Corticobasal Degeneration, both atypical Parkinsons conditions. The consultant told them the journey ahead would not be an easy one, with no cure or treatment available.

Two years on and Terry is dependent on his now wife, Susan, and a team of round the clock carers, for every aspect of daily living. Each new phase of the disease brings a new set of challenges. Terry now uses a wheelchair, and requires help with all his personal care. Changes in vision, swallowing and fine motor skills mean even the smallest tasks are exhausting. Disturbed sleep and agitation add to the daily battles.

No one can say how the condition will progress for Terry but he continues to be supported by his family, friends and health team, and he continues to face each day with grace and determination.

More about PSPA

PSPA is a small charity dedicated to helping people living with Progressive Supranuclear Palsy (PSP) and Cortico Basal Degeneration (CBD). PSP and CBD are both rare brain diseases, for which there is no treatment or cure. To learn more visit their website here.