A LOCAL business owner and her son are preparing to take on a 10km running challenge in Edinburgh next month to raise awareness of a little-known neurological condition.
FCM Trust director Suzi Hall will be joined on the start line for the Edinburgh 10km by her 25-year-old son Charlie.
The pair will run through Holyrood Park on Saturday 23 May to raise funds for the PSP Association (PSPA) in memory of a much-loved mother and grandmother.
Suzi’s mother, Jill McLaren – known as “nanny” to Charlie and her other grandchildren – was diagnosed with Progressive Supranuclear Palsy (PSP) during the pandemic. Jill died in 2023 at the age of 91.
Suzi said: “She was a fantastic lady and she worked all her life as a nursery nurse with children with disabilities.”
The diagnosis of PSP was “a shellshock for the whole family”, she added.
PSP affects around 5,000 people in the UK and is caused by the loss of nerve cells in specific parts of the brain. Over time, it leads to worsening problems with balance, movement, speech, vision and cognition. There is currently no cure or effective treatment.
Suzi explained: “It was a long and difficult journey to obtain mum’s PSP diagnosis.
“She had been experiencing problems with her balance, mobility, speech and vision for years before healthcare professionals finally recognised it as PSP.”
Suzi added that the lack of awareness surrounding the condition made the experience even more isolating.
“It’s a frustrating process, and then at the end of it, the diagnosis is a condition that no one has heard of before,” she added. “That can make you feel so isolated.”
According to the PSPA, around 60% of people living with PSP or the related condition corticobasal degeneration are initially misdiagnosed – often with Parkinson’s disease, stroke or even depression.
Suzi hopes that by sharing her family’s story and taking part in the run, she can help shine a light on the condition’s key warning signs – which include unexplained backwards falls, speech difficulties, and problems with eye movement.
She is also aiming to fundraise to give back to the charity that supported her family during a challenging time, with Suzi accessing the PSPA website and support groups.
“You meet other people who are carers for [PSP patients], which was helpful for me,” she said.
“My father is quite elderly, so it was helpful to meet and talk to other people and feel like you’re not in it on your own.”
The idea to take on a physical challenge first emerged in December, when Suzi and her colleagues agreed to give something back to causes close to their hearts.
Inspired by a twist on the traditional Advent calendar, the team set themselves a collective challenge: instead of counting down to Christmas with chocolates, one member would commit to doing something positive or charitable on each day of December.
“Everyone committed to doing something,” said Suzi, with colleagues promising to take an elderly person out on a drive, volunteer at the Jersey Marathon, or take part in a beach clean.
“It was an easy choice to pick to do something for PSPA, but finding the right challenge was more difficult,” she added.
Eventually, Suzi settled on the Edinburgh 10km after spotting it on the charity’s website.
“I wanted something that physically was going to be a stretch, without the training taking over all my spare time,” she said. “I thought it would make a great focus for a weekend away.”
What began as a personal challenge quickly became a shared one when her son volunteered to join her.
“I shared my plans with my family, and my youngest son Charlie said he would run the 10km with me,” said Suzi.
The pair have been supporting each other through training – despite the fact Suzi lives in Jersey and Charlie in London.
“We don’t live close to each other so we can’t train together, but we maintain motivation by sharing training runs and distances,” explained Suzi.
Their preparations are well underway, with Suzi having built up to running 8km and Charlie reaching 5km so far.
The pair have set themselves a target of £1,500 and have launched an online fundraising page to encourage donations.
You can sponsor Suzi and Charlie at https://www.justgiving.com/page/suzi-charlie.
Warning signs
Progressive Supranuclear Palsy (PSP) is a rare neurological condition affecting around 5,000 people in the UK. There is currently no cure, and early diagnosis can be challenging due to low awareness and overlap with other conditions.
Symptoms include:
- Balance and mobility problems such as stiffness, clumsiness or difficulty walking
- Frequent backward falls
- Fatigue and sleep problems
- Pain including cramps and spasms, headaches, discomfort from posture
- Trouble with speech such as a harsh and strained vocal quality, reduced speech volume, slurred or fast speech, and difficulty finding the right words
- Difficulties swallowing, eating and drinking, which can look like coughing, taking a long time to eat, and weight loss
- Vision problems, especially difficulty looking up or down, and changes in facial expression such as reduced blinking or a “staring” appearance
- Bladder and bowel problems
- Cognitive changes, including slowed thinking or personality changes, with impulsive behaviour putting patients at a higher risk of falling
