Let me tell you about a rare and little known condition called Progressive Supranuclear Palsy (PSP). 

PSP is a neurological condition caused by the premature loss of nerve cells in certain parts of the brain due to a build up of tau proteins which damage the nerve cells.

What does this actually mean?

Initial symptoms of PSP start you off with a sudden loss of balance when walking that usually results in repeated falls (often backwards), muscle stiffness (particularly in the neck), tremors, slow movement, extreme tiredness, changes in personality (such as irritability, apathy and mood swings), changes in behaviour (such as recklessness and poor judgement), photophobia, difficulty controlling the eye muscles (particularly problems with looking up and down), blurred or double vision.

There are no simple tests or brain scans for PSP and in its early stages, symptoms can resemble those of other neurological conditions such as Parkinson’s, Alzheimer’s, Stroke or Multiple System Atrophy so you're often misdiagnosed.

Over time, the initial symptoms of PSP become more severe making everyday tasks like reading and eating increasingly difficult whilst walking becomes impossible and you'll need a wheelchair.

As PSP progresses, controlling the muscles of mouth, throat and tongue becomes increasingly difficult and speech becomes slow and slurred, making it harder to understand so eating and speaking become nearly impossible meaning that the more you need help the less you can communicate it and most likely you'll need a feeding tube to prevent choking and chest infections caused by fluid or small food particles passing into the lungs. Usually once dysphagia sets death is often a matter of months.

You'll also have some brand new symptoms such as reduced blinking reflex (which can cause the eyes to dry out and become irritated), involuntary blinking or twitching of the eyelids (which can last from several seconds to hours), disturbed sleep, slowness of thought and some memory problems, neck, back and joint pain and headaches.

Due to the lack of muscle control you will probably also develop problems with your bowels and bladder functions like constipation and difficulty passing urine or complete loss of control over your bladder and bowel movements.

Although there may also be some problems with thinking, concentration and memory (dementia), these are generally mild and in a particularly cruel twist you will normally retain an awareness of yourself and of what is happening to you.

So basically your body, muscles and organs slowly shut down whilst you're fully aware of it and of all the frustrations and indignities it takes you through.

At the same time you disappear but you're still there.

PSP is a horrible condition that I do not wish on anyone, it robs you of everything, your body, your ability to function inside and out, your ability to express yourself to your friends and family and even your ability to cry out for help when you most need it but your brain is fully able to experience all that's happening to you as well as all that's happening to your loved ones and their frustration/sadness/anger of seeing this happening to you but being unable to help you. 

PSP HAS NO CURE and management is primarily supportive, there is medication to ease certain symptoms but in the end these things WILL happen to you if you develop this condition.

So the question is if it's such a horrible condition why have you never heard of it?

PSP is quite rare only 6 per 100,000 people develop it, to me that's 6 too many but because it's quite rare funding for treatment research and development isn't great.

Why am I telling you all of this?

Because one of those 6 was my uncle.

I'm running the London Royal Parks Half Marathon on the 8th of October in his name in an attempt to raise awareness to this horrible condition and funds for PSPA.

PSPA is 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. 

Together we can stop PSP & CBD in their tracks.