By the final days of the West Highland Way, Katie Louise Hewetson had to sit and cry before she could put on her walking boots.
“I would sit there for about 20 minutes and cry until my feet went numb,” she said.
Katie Louise broke her back in three places in a riding accident shortly before her 21st birthday. Now 34, she lives with a degenerative spinal condition and is awaiting major surgery.
Yet she had committed herself to walking almost 100 miles across mountains and punishing terrain, largely alone except for her small terrier Ernie. In her head was the voice of her grandfather.
“When it was getting really tough, I could hear him saying, ‘Get on with it, Kate. Get on with it,’” she said. “I’d be saying, ‘I’m going, I’m going.’”
Michael James Knott, Jimmy to his friends and “Jimmer” to Katie Louise, died with Lewy body dementia in 2024. He was 85.
Not only a much-loved grandfather, he was Katie Louise’s closest companion, the person who encouraged her love of animals and the countryside and who stood beside her throughout her equestrian life.
“My granddad was my world,” she said. “He was always with me with the horses and he never missed a competition. We did everything together.”
They also walked together several times a week, sometimes spending an entire day outdoors.
When Katie Louise began thinking about fundraising in his memory, walking was the natural choice.
“I wanted to do something that would have meant something to him,” she said. “If he was still with us, he would be walking it with me. He would have been there every step of the way.”
Katie Louise completed the West Highland Way over seven walking days. Her mother travelled along the route to provide food, supplies and practical help, but for much of each day Katie Louise was alone with Ernie.
The physical toll was severe. The route demanded climbing and scrambling as well as walking, and the final day involved 19 and a half miles through wind and driving rain.
Her 12-year-old son Alfie called during the closing miles to offer her support, saying: “You’ve got this, Mummy.”
Katie Louise kept moving until she reached Fort William.
“I was tired, exhausted, cold, wet and hungry,” she said. “I was doing absolutely fine until I saw my mum at the finish, and then I just started crying.”
Jimmy had first become unwell around three years before his death. The earliest signs were physical: a shuffling walk, worsening tremors, falls and increasing rigidity.
He was initially assessed for Parkinson’s disease. When he began experiencing hallucinations and other changes, further tests led to a diagnosis of Lewy body dementia.
“For probably the first year, it was more the physical things that affected him than the mental things,” Katie Louise said. “Then he really started to decline mentally. The last six or eight months were heartbreaking.”
Fluctuating cognition is a distinctive features of Lewy body dementia. Katie Louise remembers a visit during which Jimmy seemed, for a few precious hours, like the grandfather she had always known. They talked about horses, terriers and the escapades they had shared.
“It was like having my old granddad back,” she said. “After he left, I said to my mum, ‘Did I just imagine that?’ She said, ‘No, he was very lucid today.’ I cried.”
Katie Louise had never heard of Lewy body dementia before Jimmy was diagnosed. Raising awareness became as important to her as raising money.
“Until you have experienced it, you don’t know what it is,” she said. “The person who has Lewy body dementia frequently isn’t in a position to speak about it, so it has to come from people who have been there and know what it is like.”
Katie Louise has raised almost £900 and is determined to continue raise awareness about one of the most misunderstood forms of dementia.
“Everyone is probably going to get sick to death of me and my story,” she said. “But I’m not stopping.”
You can support Katie Louise’s fundraising here: www.justgiving.com/page/Katie-louise-hewetson-2
