Following the passing of her father, a local man from Langham, his daughter Rachel Barnes will be cycling from Horsham to Langham to raise funds for charity. 

Nick Holford, a much loved husband and father, passed away in January 2023 after suffering from PSP. 

Progressive Supranuclear Palsy, or PSP, is a neurological condition which is caused by premature loss of brain cells in certain parts of the brain.  It is a rare condition in which the messages to and from the brain get increasingly blocked, causing a gradual shut down. 

A person with the condition has difficulties with balance, movement, vision, speech and swallowing. There are about 4,000 living with this condition in the UK although there may be more as many medical practitioners have not had experience of the condition and in its early stages symptoms resemble other neurological conditions such as Parkinsons. Misdiagnosis is common and can only be verified by an MRI scan.

Rachel describes the disease as "a bit like Alzheimer's, Parkinson's and MND, rolled into one but with no treatment currently available. My Dad fought like a trooper, was brave until the end, facing it like the scientist he was and ensuring we fulfilled his final wish, to donate his brain for research into this cruel disease." 

Rachel will be completing the 160-mile ride with her dedicated husband, Ian. 

The duo will be raising money for the Progressive Supranuclear Palsy Association (PSPA), the only UK charity dedicated to improving the lives of people living with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD). They provide information and support for people affected by PSP & CBD whilst funding research into the causes, treatment, and eventually a cure. 

Nick, a much-loved father and husband. Image credit: Rachel Barnes.

The challenge will take Ian and Rachel 2 days to complete and will begin at Rachel's childhood home in Horsham, West Sussex, and finish in Langham, the home of her mother and late father. 

The ride will finish on Monday May 29 at The Wheatsheaf, Langham. While the timing can't be precise, the team anticipate that they will be arriving at the popular local pub at approximately 6pm. All are welcome to come to The Wheatsheaf to wave and cheer them in. 

Rachel's mother, Susan, still lives in Langham and is very proud of her daughter.

Susan said: "Rachel visited Nick regularly throughout and in particular the latter stages of his illness. We first noticed a deterioration and change in him 9 years ago, but as PSP is so rare it took a long time to get the final diagnosis. Many GPs and medical practitioners will not have come across the condition so awareness of it is vital. Research into the causes and effects of PSP is so important."

Susan is not the only local person to lose a loved on from PSP and, as a result, has joined forces with 3 other locals who have intimate experience with this illness. Together they have set up a support group for those in Rutland and Leicestershire who are suffering from or supporting someone with PSP.

Susan explained: "A group of 4 of us from Leicestershire and Rutland have set up a support group, with the help and guidance from the PSP Association. We have all sadly now lost our partners to this condition and know the isolation that comes from being a carer for a loved one with a degenerative condition when there is no known cure. We don't profess to have all the answers, but we can offer a listening ear and advice borne from experience." 

The group meets at the daycare room in LOROS in Leicester every 6 weeks on a Saturday afternoon. Their first meeting in March drew people from the wider area of Nottinghamshire and Northamptonshire, as PSP support groups are few and far between.

Susan added: "The PSP Association offer a great deal of online support and information but we all felt that what we valued at our caring time and beyond was face to face contact."

Find out more and get in touch with the group online.

Ian in training. Image credit: Rachel Barnes.

As for Rachel and Ian, the duo have been completing regular training rides, which they have been uploading onto the Just Giving page, keeping friends, family and followers updated with their training schedule.

Click here to take a peek at how they are getting on. 

So far, Rachel and her husband have raised over £700 of their £500 target, but are hoping to boost the grand total so that they can provide as much support as possible for the charity that supported her father and their family throughout his difficult diagnosis. 

Click here to donate. 

If this challenge wasn't tough enough, Ian will be riding Nick's bike from the 80s. Image credit: Rachel Barnes.

Rachel has encouraged people to donate as little or as much as they can, adding "together we can stop PSP and CBD in their tracks." 

Good luck to Ian and Rachel!

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We look forward to hearing from you.