When the pilot put the plane into its first dive, Claire Terry experienced something she had never felt before.
“I had a real sense of what it must be like to fly,” she said. “I felt so close to Dad all the way up there, just me and him.”
Claire was strapped to the top of an aeroplane above Headcorn Aerodrome, completing a wing walk in memory of her father, Mark Dix. The challenge marked her 50th birthday and has raised more than £1,200 for the Lewy Body Society.
“I spent a lot of the time shouting out to him,” she said. “I know that, not too long ago, he would have been right up there with me.”
Claire, a carer support adviser from Chipstead in Surrey, had initially contemplated a parachute jump before deciding against it.
“I basically completely bottled out,” she admitted. “For some reason I felt more comfortable being strapped to the outside of a plane rather than jumping out of it.”
Even the wing walk was not without nerves.
“I was chatting away like mad beforehand, which is what I usually do when I’m apprehensive, so I guess I was a bit more nervous than I realised,” Claire said. “I was genuinely excited, though, and looking forward to getting up there.”
Her family, cousins and family friends came to watch. For Claire, asking people to support the Lewy Body Society instead of buying birthday presents felt like the right way to celebrate turning 50.
“As time has gone by, the things that seemed important once upon a time aren’t so much anymore,” she said. “Being able to donate money to the Lewy Body Society is a far better use of people’s hard-earned money and a very special way for me and my family to mark the big 50.”
Mark died last year aged 81. He had been diagnosed with Lewy body dementia in 2019 and lived with Parkinson’s disease.
To Claire, he was “one in a million”: quick-witted, clever and wise, with an ability to make people laugh and to hold the attention of a room.
“He lived for us, his family, especially my mum,” she said. “‘Family first,’ he used to say, and what a family we were. Not a thing could come between us, and it still wouldn’t. Dad instilled that in all of us.”
Mark adored his four grandchildren. He took pride in watching his son and grandsons play football and his granddaughters perform on stage and ride their horse.
He was a keen sportsman himself, playing his final football match at the age of 60 and continuing to play golf at Cuddington Golf Club late into his illness, with the support of his friends.
“He wrote poems – so many poems,” Claire said. “He wrote to us all many times, including each of his grandchildren when they were born. We treasure them.”
Lewy body dementia progressively affected Mark’s movement, speech and ability to make decisions. Yet one part of his personality remained beyond its reach.
“LBD took everything from my dad: his independence, his speech, his capacity to make any meaningful decisions about the things that were important to him and his dignity,” Claire said.
“It didn’t, however, quite take his sense of humour. He was making us and the staff at his wonderful care home laugh until just weeks before he died.
“You can’t have that one, LBD. That stayed as his.”
The Lewy Body Society put the family in contact with Rachel Thompson, the UK’s first Consultant Admiral Nurse specialising in Lewy body dementia. Rachel provided practical advice and emotional support as Mark’s illness progressed and became a trusted source of reassurance for Mark and Andrea.
“Rachel was there for us all without question and was a huge source of comfort and support, especially to my mum and dad, who both grew to trust her implicitly,” Claire said.
“I can’t thank her enough for providing them with the reassurance and strength to carry on despite the immense challenges that this disease threw at them both. I wish more people simply knew about Lewy body dementia. I wish they understood the difference between LBD and other dementias.
“For anybody going through this with a loved one, be patient and kind. They truly do not say things or do things ‘just to be a pain’. Cherish every moment with them. Sometimes simply being with them is enough. Just hear them, hold their hand and tell them you love them. That is what I wish I could do one more time.”
Claire set herself an initial fundraising target of £500. Her total has since passed £1,200, including Gift Aid.
“The response has been absolutely incredible,” she said. “There has been so much support and encouragement and, of course, a huge amount of love for my dad.”
For anyone considering contributing, her message is simple.
“The difference the Lewy Body Society and the phenomenal Admiral Nurses make every single day to families like mine is immeasurable. Anything we can do to help this incredibly important work continue is appreciated more than anyone knows.
“Apart from us. We know.”
Support Claire’s wing walk fundraiser.
