Lindsay's Story

Lindsay, my wife of 35 years and the mother to our 3 wonderful boys, as well as being a daughter, nana, sister and aunt was diagnosed in November 2021 with PSP – Progressive Supra Nuclear Palsy at the age of 60.

PSP is a rare progressive degenerative brain disorder that is untreatable. It affects circa 10,000 people in the UK and regrettably that number is increasing. It is incredibly difficult to diagnose because so little is known about it and indeed, for many people who receive the eventual diagnosis, it has taken up to 3 years for that diagnosis to be conclusive.

With the benefit of hindsight, Lindsay and her family realise that she had been suffering from PSP for a good number of years prior to her own diagnosis.

How does this cruel disease affect those who have it and those who live with them and support them?

Typical symptoms include a loss of balance, a loss of cognitive function, effects on their speech and sight, sensitivity to light, difficulty swallowing, changes in behaviour, sleep disturbance and depression – it is a slow and inevitable decline from being a fully functioning adult to one incapable of independent functioning, all in a fully conscious state.

Lindsay now demonstrates all the main symptoms and like so many of her fellow sufferers now requires care and support.

As a family we have always looked for a positive in everything we do in our lives so we have been thinking where the positives are in Lindsay’s situation.

The first and most important one is to make Lindsay’s life as comfortable and as fulfilled as we are able to for as long as we can and we are doing that.

Secondly, however, we wanted to find a way to raise awareness of this ghastly disease and to help raise funds for a Charity that supports those affected by the disease, both the individuals and their families. That Charity is the PSPA whose website details are as follows www.pspassociation.org.uk.

How have we decided to do this?

We are organising a Charity Event – to complete a 100 mile circular walk known as The Two Roses Way in 6 days which I, along with friends, family and other supporters will be undertaking from 4th June to 9th June this year. The walk starts and finishes in our local village of Whalley, takes a route through some of the most attractive parts of Lancashire and Yorkshire - travelling from Whalley to Gisburn, Skipton, Malham, Slaidburn, Chipping and back to Whalley. In doing so, we hope to raise awareness about the disease and raise funds for the PSPA for their vital work in supporting those affected by this disease.

How can you help us?

• DONATE - by clicking 'Give now' on this Just Giving page to help us reach our target

• FOLLOW - @walkforlindsay on Facebook, Instagram, Twitter and Tik Tok

• VISIT - www.pspassociation.org.uk and spread awareness of the disease and the work that people are doing in support of those that have it

We would be happy whether through our supporters and sponsors or whether directly, for all to join in this endeavour in any way they can, including joining us on the walk and fundraising directly.

For any enquiries in respect of the walk please contact me, Andrew Coney on 07974 017378 or via the dedicated walk email of walkforlindsay@hotmail.com

Thank you