Pitstone man to take part in marathon for The National Brain Appeal charity

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James Westcott is running to raise money for research into the rare form of dementia that killed his father

James Westcott, aged 33, who lives in Pitstone with his wife Lucinda and their eighteen month old son Hugo, will be taking part in the London Marathon on Sunday 23 April.

He will be raising money for The National Brain Appeal, the charity that raises vital funds for the National Hospital for Neurology and Neurosurgery where his father Peter was treated and took part in dementia research before he died in 2014, aged 72.

Peter Westcott, who lived in Hemel Hempstead, was diagnosed with frontotemporal dementia or FTD in 2012.

He had a form of FTD where he also had motor neurone disease (MND) and James plans to split the money he raises from the marathon between the Motor Neurone Disease Association and The National Brain Appeal. Peter’s mother also had FTD with MND so his wife Lindsay, James’s mother, had a good insight into what lay ahead for them as a family.

FTD is rare, with just 16,000 people in the UK thought to be affected. It is a form of dementia that can often affect younger people, typically in their 40s to 60s, and its symptoms are progressive. Whilst Peter was 70 when he was diagnosed, with hindsight his family recognise that he had the disease for at least ten years prior to getting a diagnosis.

James, who works in the renewable energy industry, says the symptoms at first were mild, such as making decisions that were slightly out of character, being less patient than normal and an increased appetite for sweet foods such as biscuits.

Peter’s spacial awareness was also affected which led to a bad fall where he banged his head. Sadly, the disease seemed to progress far more rapidly after this. His comprehension disintegrated and, outside of immediate family, he would not recognise people.

Peter had worked in the demolition and haulage business. James used to be in awe of his father’s ability to give directions.

He said: “I could call dad up if I was lost and it didn’t matter where I was in the country, he would be able to tell me what route I should take. It was very sad to see that ability, and many of his other recognisable character traits, disappear.”

James was a keen rugby player and Peter would also drive him all over the country for matches.

He said: “He never missed a game and he always told me how proud he was of me, and all my siblings.” James has a younger brother Ben and younger sister Alex and his parents are also guardians to Ellis, aged 13.

The hospital where Peter was diagnosed, The National Hospital for Neurology and Neurosurgery in Queen Square, London, is a specialist centre for diseases for the brain, spine and nervous system.

It is also home to the Dementia Research Centre, that was part-funded by The National Brain Appeal to work towards finding treatments. The charity also funds Rare Dementia Support, where patients and families can received specialist support.

Peter took part in dementia research and a clinical trial at the hospital.

He also donated his brain to the hospital for research after he died. James is also taking part in research. This involves annual visits to The National Hospital to undergo a number of tests including MRI scans, blood tests, memory and comprehension tests and a lumbar punture so his cerebrospinal fluid (CSF) can be analysed.

He, his wife, and his mother also attend Rare Dementia Support meetings.

Peter’s consultant neurologist Professor Nick Fox, who is also director of the Dementia Research Centre, said: “Dementia generally has been a neglected area of research and rare forms of the disease like frontotemporal dementia have been particularly neglected.

Our research is focused on some of these less common dementias. Our overriding aims are to find ways to prevent or delay the onset of disease and to improve care of patients and their families.

We are very grateful to Peter for so generously taking part in research while he was able to, and to his son James for continuing to take part. This provides us with such valuable information to help us work towards finding treatments.

We also really appreciate the fantastic fundraising work that James has been doing for The National Brain Appeal, the charity that helped fund the Dementia Research Centre, revolutionising our research capabilities and which continues to help fund research and support for families and patients with these rare and devastating conditions.”

In the last nine months of Peter’s life, he needed round-the-clock care. James’s mother Lindsay and his sister Alex were his main carers. His final days were spent in a hospice in Berkhampstead.

James said: “I am very lucky to have been raised by such wonderful parents. I miss my father dearly and my mother put so much into caring for him. They were married for nearly fifty years.”

Lindsay now has two grandsons whom she adores, James and Lucinda’s son Hugo who is eighteen months and his sister Alex’s son Sebastian who is three months younger than Hugo.

The family will be out in force to support James as he takes on the marathon. Whilst James has always been sporty, running is not something he enjoys but he is determined to do his best on the day and to raise as much money as possible for his chosen charities.

He said: “I felt that by asking people to donate money I needed to take on something that would be a real challenge for me. Having said that, I am now looking forward to the day and I hope I do my father’s memory proud.”

To support James go to: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=JamesWestcott1