Brothers near £10,000 London marathon target, inspired by their mum, a Worthing parkrun regular with rare form of dementia

Helena Clarke, 58, was diagnosed in 2020 with posterior cortical atrophy (PCA), a rare form of early-onset dementia that initially affects vision and spatial awareness, causing difficulties with seeing what and where things are.

Her sons Matthew Clarke, 30, and Richard Clarke, 27, say they are proud of their mum for how positive and energetic she is. They ran the marathon on Sunday with cousin Ben Humphris, 29, and Matthew’s partner, Janina Pescinski, 33, and are close to hitting their £10,000 fundraising target as Team Rare Dementia Support.

The brothers said: "The PCA support group Mum is part of has been invaluable in helping her cope with all the change that has followed her diagnosis and to keep doing what makes her happy as much as possible. She loves to paint, volunteers at the local food bank, and is also a runner – she and our dad, David, are regulars at Worthing Parkrun along with friends from their running club, Run Academy Worthing."

Helena started to experience symptoms in her early 50s but getting a correct diagnosis took some time. Matthew, a structural engineer, first noticed something was wrong when they were on a family trip and were staying overnight in a hotel.

He explained: "We were playing a card game, Mum, Dad, Richard and I. It was a game we had played before, similar to snap. Mum seemed totally confused by it.”

Richard, who is in his final year of medical training, agreed: "It was odd but at the time we just put it down to her being tired from travelling. It has been hard seeing Mum and Dad in an emotionally vulnerable state. Mum has always been independent and likes to do her own thing and it is heartening to see that she has found things that she can do and enjoy.”

Helena herself realised she was losing confidence driving. She said: "I felt I wasn’t reading the road in the same way and I clipped a wing mirror. This had never happened to me before.”

Then David noticed his wife could not see where her plate was on the table in the hotel, where white plates were set out on white tablecloths, and when she drew the curtains in their bay window at home, she would often miss a set.

When Helena was eventually diagnosed, she was told it was not that her eyes could not see but her brain could no longer understand what her eyes were seeing.

Matthew said: “Like my parents, I had never heard of PCA and had to read about it. It means that mum doesn’t see shape and space in the same way as the rest of us. She might be looking for something in the fridge and can see it but she can’t understand what shelf it is on. The 3D-ness of things confuses her.

"I think they have done really well since the diagnosis and have come round to being more positive and finding so much to be happy about. I know that being part of Rare Dementia Support has really helped. We’re running the marathon for The National Brain Appeal, who fund the service. It’s nice to be doing something that will make a difference for people who have similar conditions to mum.”

A nurse put Helena in touch with Rare Dementia Support (RDS), a service funded by The National Brain Appeal, and encouraged the family to make contact. Both Helena and David signed up as RDS members and now regularly go to meetings, both in person and online.

Helena said: “Our lives were turned upside down by the diagnosis and it was reassuring to know there was someone we could talk to. Rare Dementia Support were really helpful and enabled us to get into a more positive frame of mind.”

In her very busy life, Helena takes every opportunity that comes her way. She takes part in an inclusive arts class for people with visual disabilities, sings in a community choir, volunteers at a food bank, has joined a running club and recently completed her 50th Worthing parkrun, with David or a parkrun volunteer as her guide.

Helena said: “I have always done jobs where I am helping people and it is nice to still be able to do that and be part of the food bank team. It makes me feel more useful, more like me.”

Helena will also be supporting The National Brain Appeal at the 2023 RHS Chelsea Flower Show. The charity's Rare Space garden has been designed specifically for people like her, with visual and spacial forms of rare dementia.

The Clarkes' own garden has always been an important space for Helena and the family. They have rewilded the garden and it has an amazing diversity of grass and flower species and attracts lots of wildlife.

Helena said: “What is lovely is that the wafting movement of the grasses and birds flying in and out is something that I can see, whereas stillness I can’t. The smell of the garden is also something that I really notice now.”

To support the Team Rare Dementia Support fundraising, go to justgiving.com/fundraising/helenapca