Mandy’s story

Mandy’s story

Mandy’s mum, Veronica – or ‘Wonky’ as she’s known to all, a self-selected moniker from her childhood when her full name was unpronounceable – has Progressive Supranuclear Palsy (PSP). Despite the cruel disease, Mandy says her mum’s days are happy days thanks to Rennie Grove.

“Mum was misdiagnosed with Parkinson’s Disease at first,” explains Mandy, a common misdiagnosis for PSP as early signs are similar to symptoms of Parkinson’s. “Just before lockdown, she was doing OK and getting about with a walker. But then she went downhill really fast. Now, she’ll have several weeks where she’s stable, then a sudden dip.”

The latest step change in the disease’s progression has left Mandy’s mum unable to talk. No longer able to swallow, she has to take food through a tube because there’s a risk she’ll choke.

“She was so fit, healthy and active. A regular swimmer, cycling for hours with us on family holidays, and a huge fan of line dancing, she’d romp the 2.5K through the village to get her paper every day,” recalls Mandy. “I have fond memories of her at my wedding, dragging my uni friends onto the dance floor for a line dance where she was the last woman standing!”

The transformation is painful to watch. But Mandy says that’s why her family is so grateful to Rennie Grove. “They’ve helped take some of the pain away. My dad and I had been really struggling; they understood the condition, knew what mum would need and make sure she gets it. They’ve organised equipment and helped us access funding. Their knowledge and ability to anticipate the care needed at the next stage means mum got 24-hour care just at the right time for her and my dad.

“The Rennie Grove nurses are always kind, compassionate and positive – there for us whenever we’ve needed them throughout Mum’s fight with this cruel disease. Mum loves seeing people and they really bring her to life. The house is still full of laughter, despite everything. And my dad is so much more relaxed as a result. I know he felt very alone during lockdown – and he was so stressed by the situation that he collapsed. Now he knows things are in place, he knows who to call and he knows he can call them at any time of the day or night and they’ll be there. And we have needed to call the overnight team out, for example when Mum’s had a choking episode. I know Dad relies on Rennie Grove and he trusts the nurses implicitly, to the point where now he won’t worry if he misses a visit. For example, if a nursing visit clashes with his Pilates class, he’ll leave the nurses to it. He knows they’ll look after Mum, and he’s learnt he needs to take care of himself too.”

Mandy’s friend and colleague, Ali Arber, knew how much Rennie Grove’s support means to the family. When she spotted an advert for the Tour de Rennie Grove, she thought it may be the way to ‘give back’ that Mandy had been looking for.

“We called ourselves the Wonky Wheelers, in mum’s honour, and we’ve done all three legs over three consecutive weekends!” explains Mandy proudly. “Although I’ve done a few triathlons, the distances – and the hills – were a challenge.

“But we’ve loved the routes and we’ve enjoyed visiting places we used to go together, like Whipsnade Zoo and Tiggywinkles – that one was a slight deviation from the route – but so worth it for the smiles we got when we showed Mum the photos. It’s been lovely for lots of reasons. Mum adores hearing the stories about the ride, and she met us at the end of the first leg, all smiles. Her cousin, whom she hadn’t seen for three years, joined us there too.”

As well as supporting her parents in the neighbouring village, Mandy’s a PE teacher at an Aylesbury school, and her children are both currently sitting exams (GCSEs for one, A levels for the other). She says training for the bike ride has been a healthy distraction and a great focus.

“The routes are tough – but when you know you’re doing it for a really good cause, it’s easy to keep going,” she says. “Rennie Grove has been a lifeline to Mum and our family and friends. Their specialist care, day and night, has guided us every step of the way and helped ensure she receives the best care. Above all, it’s meant she can stay home, where she wanted to be – and that’s just meant the world.