Mother’s moving words over battle with rare disease

Moyra Lee with her daughter Karen.
Moyra Lee with her daughter Karen.
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A grandmother has opened up about her battle with a rare neurological disease that has left her bed-ridden.

Moyra Bernadette Lee was diagnosed with Progressive Supranuclear Palsy (PSP) in 2010 after suffering from symptoms including falling over backwards, problems with her eyesight, and struggling to hear people talk.

The disease, which affects 4,000 people in the UK, has left Moyra in bed, with visits by her daughter Karen, son-in-law Maurice and seven-year-old grandson Ethan helping to brighten her day.

Speaking via her daughter, Moyra said: “I know we will all die some day, but for me that day is close.

“I lie here in this room, in this bed, and wonder when that will be. Hours, days, weeks, months, but not years.

“I can’t really see much now, just a fading light. I can’t speak, I can’t eat or drink any more.

“I am lying here in my specially made bed. It moves of its own volition occasionally to stop me from falling out, getting uncomfortable or getting bed sores.

“I will never leave this bed again. But I can still see the funny side of myself.

“Yes, life can be unfair but I have had a good one.

“People need to understand that I can think and understand most things, even if I do feel anxious and confused from time to time.”

The former secretary, who also worked at the Royal Victoria Infirmary in Newcastle, lives in Tynemouth with her husband Bobby, with her daughter living next door.

Moyra added: “I was told only 4,000 people at any one time suffer from PSP in the UK. Because of its relative rarity it doesn’t attract much investment or support.”

Her family have set out to raise awareness of the disease and funds to carry out research into a potential cure.

A Moyra’s Green Day charity event was held on Tynemouth Longsands to tie in with St Patrick’s Day, with hundreds of people taking part in a bid to set a world record for the largest human shamrock, followed by a fundraising night at Crusoe’s.

And initial plans are under way to make the event bigger and better next year.

The disease has also helped Karen – a managing partner at Tynemouth-based Blackswan – reconnect with a university friend in London, who got in touch recently and said their mother had also been diagnosed with PSP in 2012.

Moyra said: “The friend and Karen, out of touch with each other for years, had been living a parallel PSP experience through the same journey with their respective mothers.

“This is remarkable, largely because the illness afflicts so few people. To find that someone you’d shared the formative years of your life with had experienced this parallel journey, the chances must be very small.”