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Alison Norris avatar
Alison Norris

Cousins walk

We are walking 26 miles for The PSP Association because we want to raise money for this worthwhile cause

85 %
£1,700.00
raised of £2,000 target
by 63 supporters
Donate

The PSP Association

We offer advice and fund research to improve the lives of people with PSP

Story

Thanks for taking the time to visit our JustGiving page.

We are walking 26 miles on the Cerne Valley Trail on Saturday 17 June to raise money for this very worthwhile charity for the benefit of the people living with this awful disease everyday.

Two years ago our beloved Dad, Grandad and Uncle, Adrian Downton was diagnosed with PSP.  Adrian is a retired Headmaster and has been very involved in the local community, so it's been very hard to watch his deterioration at the hands of this debilitating disease. At the time we didn't know anything about PSP but as time has passed we've got to know a bit more about how it affects sufferers.

By doing this walk we aim to raise awareness of PSP and raise money to help people like Adrian who live everyday with this disease.

Thank you for your donations.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.

Claire, Sarah, Gil, Tom, George, Anna, Alex, Ali, Larry, Dave and Tim

We'd be grateful if you could take the time to read the letter below written by Adrian Downton on what it is like living with PSP.


Living with PSP

It is always a privilege to help out when one retires, as one can use skills gleaned from a working span of years. As one has the time as a retired person, it is an opportunity to put something back in to society to help…..unless you are beset with illness of any kind.

I was amazed to realise over a period of time that not all was well in my speech and it was hard to find words to express ideas and hold a coherent conversation – not my usual difficulty in life! Two years ago, I was diagnosed as having PSP, which will get progressively worse over time.  It damages the nuclei that control eye movement and it causes a variety of weaknesses because it destroys the nerve cells in the brain causing degeneration. 

There is no cure, at present, for the disease.  PSP is associated with the over- production of a protein called ‘tau’ in certain areas of the brain and limits what you are able to do.  It affects speech, swallowing and mobility, to name a few of the symptoms. 

I have been moved and supported by the love of so many family members and friends.  The support from the speech therapist has been outstanding with the addition of an app for my Ipad, which converts the printed word in to sound, which is a great help.  The Consultant, occupational therapist and other professionals help with sensible and realistic advice. 

It is easy to withdraw from life when faced with the daily difficulties presented by this disease, but the support and encouragement I have received gives me the confidence to maintain contact with all that is precious to preserve sanity.  My wife Gill and daughters Sarah and Claire and many friends play a major role in ensuring life is as normal as can be.  One has to manage and cope with adversity in life, but it does help with the knowledge that friends are with you as the journey becomes more difficult. 

Not many people have heard of PSP, unless family or friends are affected by the disease.  On the 17th June 2017, my daughters, grandchildren, nephews, niece and other members of our family are walking 26 miles along the Cerne Valley Trail in Dorset to raise awareness of the disease and funds for the PSP Association.  The Association offers support to those living with the disease and funds research into treatment and hopefully, one day, a cure for the condition. As with all charities, they rely entirely on donations to fund their work. 

Thank you for your contribution.

Adrian Downton

Photos

10
  • Living with PSP
  • Family photo +8

Supporters

63