Story
Hi there lovely people. Thanks for taking the time to visit my JustGiving page.
On 22 March 2015 I will be running (maybe walking and possibly even crawling) the Reading half marathon and hopefully raising some money for a very worthy cause in the process.
PSPA is a charity that provides advice; support and information to people living with PSP and CBD, and supports and helps fund research into treatments and (hopefully) ultimately a cure for these conditions.
Unfortunately CBD touched our lives when Tom’s Mum (and my future mother in law was diagnosed in 2011. PSPA has provided support to various family members and countless others in the same situation.
Please help me in supporting a fantastic charity by sponsoring me to run the Reading half marathon. I’ve stumbled around this event in previous years but I am by no means a natural runner and I haven ‘t been able to do all the training that I wanted to do. However, I am determined to make it around the course for PSPA and your contribution will really spur me on!!!!
PSP or (progressive supranulcear palsy) is an disease associated with an over-production of a protein called tau in certain areas of the brain. It is a rare condition and it is thought that there are around 4,000 people in the UK living with the condition at any one time.
Symptoms may include loss of balance and unexpected falls (usually backwards), stiffness and eye problems. These can include difficulties in looking up or down, focusing, double or tunnel vision and dislike of bright lights.
Some people can experience behavioural and cognitive changes – depression, apathy, clumsiness, or tiny, cramped handwriting. Early on, symptoms may resemble those of other neuro-degenerative diseases such as Parkinson’s disease, Alzheimer’s disease, Motor Neurone disease or Multiple System Atrophy. As a result many people are initially misdiagnosed.
As PSP progresses, symptoms increase. There may be problems with swallowing, slurred speech, recurrent falls, irritability and apathy, slowness of response and severe difficulties walking. Sometimes the eyelids close involuntarily and it becomes increasingly difficult to look up or down. Emotional lability, such as laughing or crying inappropriately, may be another feature and there can be incontinence.
CBD (or cortico basal degeneration) is an associated degenerative brain disease, affecting people from the age of 40 onwards. Although there are biological similarities to PSP, with similar nerve cell damage and build up of tau protein in the brain, the classical clinical picture is quite distinct.
As yet, there has been no research into the prevalence of CBD but we do know that it is much less common than PSP. People are often initially misdiagnosed as having Parkinson’s disease or a stroke.
At the moment there is no treatment to stop or slow the progression of CBD. However, many symptoms can be treated and are usually managed in a similar way to those for PSP.
CBD often starts with progressive numbness and loss of use of one hand. There can also be jerking of the fingers, slowness and awkwardness and the feeling of having an ‘alien limb’ – with complex unintentional movements of one limb causing problems with normal motor tasks.
Gradually the arm and/or leg on one side is affected and then the arm and/or leg on the other. People with CBD often have trouble controlling one hand when doing everyday things such as writing or tying shoelaces – tasks that involve individual muscle movements we take for granted. Eye movements can also be disturbed but these are normally less debilitating than in PSP.
Thanks in advance – part of the mission statement of PSPA is to increase awareness of PSP and CBD and if you’ve read this, hopefully we’ve already achieved something. If you would like more information about PSPA, PSP or CBD you can get it at http://www.pspassociation.org.uk/. If you feel inclined please support PSPA awareness week from 19 – 26 April 2015.