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Ted’s story

“He did live life as full as he could do, right until the end in 2017. He remained connected to people and challenged himself in aid of charity.”

Ted’s dreams of a blissful retirement were shattered by his PSP diagnosis but here his wife Sally shares how he lived life to the full. 


 

After two decades together, we were looking forward to retiring together, but then Ted started to become ill.

Once a chatterer who relished tramping through country woods, Ted quickly deteriorated, and had to use a wheelchair to get about. He also found talking increasingly tough and exhausting.

These were some of the first signs something wasn’t right. Some of his students spotted small changes in the way he walked and spoke but, such was his immense popularity, no one could bear to publicly voice their worries.

Ted used to describe his initial symptoms as akin to drunkenness; swaying as he walked, falling up flights of stairs, clumsiness and anger.

Doctors seem to be baffled what his symptoms could be and they eventually put Ted’s condition down to stress. It was only a year before his death that a neurologist pin-pointed it as PSP.

By that point, Ted had felt he had lost control of life and used to get very frustrated, especially since he used to walk everywhere. Despite being unable to read and feeling like his fingers weren’t where they were supposed to be, the clarity of his thoughts were unaffected.

We used to love travelling together and had visited the likes of Germany, India and New Zealand but then we were landlocked in Winchester. This was partly due to Ted’s frailty but also because of the difficulty of securing travel insurance for him.

Instead our days were punctuated with activities organised by Winchester’s Live At Home Scheme which included exercise classes and subsidised pub lunches. Once a month, we also attended a PSPA Support Group too. Here we gained a lot of solace.

We received all the medical and social care we needed but that’s only because we knew how to access it through our shared professional background in social work.

Ted attended the Rainbow centre where they use conductive education, the principles of neuroplasticity to enable him to keep functioning as long as possible. He used to inspire and encourage others by his attitude to his illness, in always doing what he could. He was always grateful for everything and thanked all his carers every time they did anything for him.

He did live life as full as he could do, right until the end in 2017. He remained connected to people and challenged himself in aid of charity.

He did a zip wire to raise money for the rainbow centre two years before he died, which he loved – imagine flying through the air when you are normally stuck in a wheelchair! He also had a ride in a speedboat and many other adventures with his carer John.

He died with a smile on his face, having just heard that his favourite football team had just won 7-0 the night before, and with me and my brother beside him.

Karen’s story

“We continued to live life to the full.”

Dawn’s story

Dawn’s dad, Noel MacCoombe,  was a really athletic and active man, having played rugby and boxed when he was younger.