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World Brain Day 2020

World Brain Day 2020

Today, 22nd July, marks World Brain Day 2020. Approximately 800,000 people live with a neurological condition in Ireland. To celebrate this day, we would like to promote greater awareness and understanding of hydrocephalus, uncover the experience of living with a neurological condition during the pandemic, in addition to highlighting the need for more investment in services.


Video explaining hydrocephalus:

What is hydrocephalus?

Put simply, hydrocephalus is a condition where there is too much ‘water on the brain’. This water is called cerebrospinal fluid (CSF) and is found within the brain and the spinal cord. A small amount of CSF is produced by the spinal cord and is absorbed back into the bloodstream. CSF contains nutrients and proteins necessary for the nourishment and function of the brain and carries waste products away from tissues in and around the brain.

The brain maintains a balance between the amount of CSF that is produced and the amount that is absorbed. Hydrocephalus occurs when there is an imbalance between the production and absorption of CSF. This can be caused by a blockage in the pathways through which the fluid travels, from an overproduction of fluid or a difficulty in absorbing the fluid that is produced. This then causes the ventricles to enlarge and the pressure inside the head to increase, resulting in an enlarged head and increased pressure symptoms.

Causes

Some cases of hydrocephalus are present at birth, while others develop the condition in childhood or adulthood. Hydrocephalus can be inherited genetically and may be associated with developmental disorders such as spina bifida or encephalocele. Hydrocephalus can also occur as a result of brain tumours, head injuries, haemorrhage, or diseases such as meningitis.

Treatment

Hydrocephalus can be treated in a variety of ways. Hydrocephalus is most commonly treated indirectly by implanting a device known as a “shunt” to divert the excess CSF away from the brain. The shunt is a flexible tube which, along with a catheter and a valve, is placed under the skin to drain excess CSF from a ventricle inside the brain to another body cavity such as the peritoneal cavity (the area surrounding the abdominal organs).

Once inserted, the shunt system usually remains in place for the duration of a patient's life (although additional operations to revise the shunt system are sometimes needed). The shunt system continuously performs its function of diverting the excess CSF away from the brain. A limited number of patients can be treated with an alternative operation called endoscopic third ventriculostomy. In this procedure, a surgeon utilizes a tiny camera (endoscope) with fibre optics to visualize the ventricles and create a new pathway through which CSF can flow.

Living with Hydrocephalus

The effects of living with hydrocephalus vary between individuals depending on the area of the brain most affected and pre-existing degrees of ability. Some people with hydrocephalus may have problems with:

• Learning

• Decision-making

• Logical thinking

• Executive Functioning

• Organisational problems and an inability to follow verbal instructions

• Short-term memory difficulties

• Physical co-ordination

• Passive behaviour

All of these have major implications on managing everyday life. Receiving adequate, easily accessible, and frequent neurological care is vital to individuals living with hydrocephalus.

For more information on hydrocephalus, please click here.


Life in Lockdown

As part of World Brain Day 2020, we would like to reflect upon an article in the Irish Daily Star which featured two of our members, Seán O'Kelly and Megan McGuckin, as they virtually planned their upcoming wedding in 2022 and discussed living with a neurological condition during the lockdown. A study from Rare Diseases Ireland at the time had uncovered that more than half of people surveyed had their medical appointments cancelled as a result of COVID-19, and almost two thirds felt that the lockdown had affected their mental health. Seán experienced both issues during the pandemic but managed to stay positive by focusing on the present. Recent findings from the Neurological Alliance of Ireland (NAI) also indicate that out of 600 patients/carers surveyed, 26% had significant challenges accessing neurological care and over 50% reported that the lockdown had a considerable affect on their family life, relationships, and emotional wellbeing.

Looking back on the piece, Seán is increasingly concerned that the country will fall back to where we began back in March. ‘Thankfully, I haven't needed urgent care/services regarding my shunt, but if someone asked me during lockdown would I avail of neurological services, I would say no. As we ease out of the lockdown, I would be slow to avail of them unless absolutely necessary.’

The NAI are raising awareness of the impact of COVID-19 on people living with neurological conditions and their families, in addition to the neurological charities they rely on for support. To find out more about World Brain Day, please visit: www.loveyourbrain.ie and www.nai.ie


NAI SUBMISSION TO THE OIREACHTAS COMMITTEE ON COVID-19

The Neurological Alliance of Ireland has made a submission to the COVID-19 Oireachtas Committee, calling on the new government to take immediate action to protect existing services, and develop critically needed capacity in neurological care nationwide. Services provided by the not-for-profit sector are under threat due to the devastating impact of COVID-19 on charity fundraising.

More information is emerging about the neurological consequences of COVID-19 with implications for COVID-related demand on neurological care services, including neurorehabilitation. The Neurological Alliance of Ireland (NAI), the national umbrella for neurological charities, is concerned that the COVID-19 pandemic has unveiled the major deficits in neurological care in Ireland at a time when these services are critically needed in the fight against COVID-19.

Find out more by clicking here.

The NAI are raising awareness of the impact of COVID-19 on people living with neurological conditions and their families, in addition to the neurological charities they rely on for support. To find out more about World Brain Day, please visit: www.loveyourbrain.ie and www.nai.ie


NAI LAUNCH THREE YEAR STRATEGIC PLAN ON WORLD BRAIN DAY

The Neurological Alliance of Ireland are launching their three-year Strategic Plan on World Brain Day, 22nd July. The plan is being launched at an unprecedented time for the neurological charities that make up the NAI umbrella, with many struggling to survive and sustain services due to the devastating impact of COVID-19 on public fundraising.

The three-year plan focuses on developing the NAI to be a strong advocate for investment in services and supports for the 800,000 Irish people living with a neurological condition.

The plan is available to download here.

The Chair of NAI and SBHI CEO, Tom Scott, speaking about the plan: