On 31st May 2015 I will be running the Edinburgh Marathon (or attempting to anyway) Although I've never really considered myself to be much of a runner, taking part in a marathon is something that has interested me for a while. Earlier this year when I received an email from the PSP Association offering marathon places through the charity, I decided that if I was ever going to do it, now was the time!

I'm running the marathon to raise funds and awareness for the PSP Association; a charity that works closely with PSP (Progressive Supranuclear Palsy) sufferers and their families. PSP is a largely unheard of, but debilitating disease that my grandad was diagnosed with in September 2011. At this point, none of us had heard of PSP, as was the case with many nurses and carers we came across - so don't feel too bad if you've not heard of it either! Grandad lost his battle with PSP on the 3rd January 2015.

So what is PSP?

• PSP is a terminal degenerative brain disease

• Its cause is not known

• Symptoms include falling and problems with vision

• PSP progressively robs people of their ability to walk, talk, see or swallow

• There is currently no known treatment and no known cure

As is often the case with the disease, he was misdiagnosed with Parkinson's or 'Parkinsonism'. The rate in which Grandad's condition worsened wasn't fully consistent with Parkinson's, In the space of a year grandad suffered several falls which resulted in many trips to A&E and stays in hospital. The severity of these falls varied from a cut on his head & a hole in the wall, stitches above his eye after a coming together with the fireplace, a broken ankle, two broken ribs and a serious infection caused by a simple catheter change. As I'm sure you can tell, this wasn't an easy time for our family. In particular my Gran, who did a fantastic job of caring for him at home as his condition deteriorated rapidly. In May 2012 he was admitted to Cynthia Spencer hospice, which at the time we believed would be a temporary solution and grandad would return to the comfort of his own home once he was 'better'. However, in August 2012 the inevitable decision was made to move Grandad into a nursing home to ensure he would receive the care he needed.

Unfortunately despite moving into Red Ruth nursing home to receive 24 hour care, the misunderstanding of his illness and neglect of Grandad resulted in a problematic stay over the year he spent there, and eventually resulted in him being re-admitted to Northampton General Hospital because of a life threatening infection. After a 6 week stay in the hospital he was relocated to Richmond Care Village in September 2013, this wasn't without it's problems, but it was certainly a more comfortable and caring place for him. He stayed at Richmond until he lost his fight with PSP in January 2015.

Seeing the disease completely take over grandad's life over the 4 years, gradually robbing him of his life and personality wasn't nice to see. Visits slowly consisted of less conversation as he lost the ability to talk. Simple sign language such as a thumbs up or down became the only method of communication, until eventually a blank stare was the only response he could offer. Despite his efforts to continuously greet us with a strong hand-shake and a big smile, it was clear that he was becoming increasingly uncomfortable and there was nothing anyone could do to combat the disease. The fact that we had never heard of PSP is one of the reasons I'm making this appeal. Of course I'm hoping you will donate money to help fund research into PSP, but I'm also trying to raise awareness of this devastating illness.

To ensure that PSP sufferers are diagnosed effectively and receive the care they need, PSP and the symptoms of PSP have to be more widely known, both within the medical profession and the wider community.

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