PSPA supporter completes Cayman Marathon in memory of her dad
From PSPA
PSPA supporter across the sea, Edel O’Donnell, who lives in the beautiful Cayman Islands, completed the Cayman Islands Half Marathon to raise funds.
Edel, who used to live in Ireland until a year ago, finished the race in 2hrs 3minutes, which was a personal best.
She said: “I ran the marathon for PSPA for a number of reasons but first and foremost for my Dad John, In November 2005 my Dad, after a lot of misdiagnosis from different doctors, was diagnosed with PSP. As devastating as it was to hear it was a relief to finally put a name to what was happening to him, after a very difficult couple of years and a brave battle by my Dad he sadly passed away in November 2007.”
She added: “He was the life and soul of our house and is very much missed. I ran it as a thank you to the PSP Association. In 2007 myself and my Mum attended a meeting they held in Dublin. It was the first time we’d met anyone going through PSP and it was so helpful to meet others who knew what we were going through, and we really appreciated the meeting. “I ran it raise awareness of this terrible illness so that in the future when families get this news they may have at least heard of PSP and know there is support out there. It was my pleasure and privilege to run for PSP.”
PSP (Progressive Supranuclear Palsy) – and the related condition CBD (Cortiso Basal Degeneration) – are rapidly progressing neurological conditions caused by the death of nerve cells in the brain, which affect eye movement, balance, mobility, speech and swallowing.
Over time they can rob people of the ability to walk, talk, feed themselves or communicate effectively. The average life expectancy is seven years from the onset of symptoms.
The PSP Association is the only national charity representing the needs of people living with PSP and CBD. It provides advice, information and support to people affected by the conditions, their families and carers, and health and social care professionals.
The causes of PSP and CBD are unknown
PSP symptoms include backward falls and problems with vision, whilst CBD initially affects only one side of the body
Both PSP and CBD are difficult to diagnose in their early stages
There is no treatment and no cure for either condition
It is estimated that around 10,000 people have PSP in the UK
What is PSP?
Support and Information A Brief Guide to PSP
PSP is caused by the progressive death of nerve cells in the brain, leading to difficulty with balance, movement, vision, speech and swallowing. It is so called because it’s:
Progressive – it gets steadily worse over time
Supranuclear – it damages parts of the brain above the pea-sized ‘nuclei’ that control eye movements
a Palsy – it causes weakness
PSP is associated with an over-production of a protein called tau in certain areas of the brain. In PSP, it forms into clumps – or neurofibrillary tangles – which are believed to damage nerve cells.
There is nothing to suggest that the disease is inherited but research indicates that some people may have a genetic susceptibility that puts them more at risk of developing the condition than others.
PSP is a rare condition. Research into the prevalence of the disease suggests that there are around 4,000 people in the UK living with the condition at any one time, though neurologists believe the figure could be as high as 10,000.
Signs and Symptoms
Early 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.
The average life expectancy is around seven years from onset. However, every case is different – there is considerable variation in the symptoms and rate of progression in individuals.
For more information on managing these symptoms visit our
Managing Symptoms page
Diagnosis
There are no simple tests to diagnose PSP. Brain scans are often used by neurologists for diagnosis as they help by excluding other conditions.
Due to the slowness of movement and balance problems, PSP is often initially diagnosed as Parkinson’s disease, a stroke or a brain tumour. Sometimes it is misdiagnosed as Alzheimer’s because of changes in mood, intellect and personality that can occur.
PSP often goes undiagnosed in the elderly, especially for those living in care homes.
Data held by the PSP Association indicates that three out of every four people with PSP are initially misdiagnosed and often repeatedly misdiagnosed with other conditions.
There are no effective treatments for PSP but there are many therapies that can help manage symptoms. People with PSP should see their neurologist and palliative care team on a regular basis.
Hopefully, in the future, research will lead to new treatments to stop or at least slow down the progression of the condition.
What is CBD?
Support and Information A Brief Guide to CBD
Cortico Basal Degeneration (CBD) is a 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.
Cortico – affecting the brain cortex
Basal – also affecting other parts of the brain such as the basal ganglia
Degeneration – death of nerve cells in the brain
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.
Signs and Symptoms
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.
Diagnosis
Like PSP, there are no simple tests or brain scans for CBD which can help neurologists diagnose the condition. CBD is often initially misdiagnosed as a stroke or Parkinson’s disease.
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