In this video, Professor Christopher Shaw at the Institute of Psychiatry, London, explains the effects of motor neurone disease and how the latest genetic breakthroughs will allow his assembled team to gain insight into the precise causes and mechanism of this disease.
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Colm Murray
Last night I watched with admiration and interest MND – The Inside Track, a moving documentary featuring the RTÉ Sport broadcaster Colm Murray, who was diagnosed with motor neurone disease nearly two years ago.
In the documentary, Colm says that he wanted to do something “positive”, despite his personal struggle. His doctor, Trinity and Beaumont professor Orla Hardiman, has hailed him for his willingness “to be of service”, and to help find a future cure by partaking in medical trials.
One in 50,000 people will develop the terminal disease, which attacks the central nervous system, and ultimately destroys all muscular function, in any one year, but what exactly is this disease?
What is Motor Neurone Disease?
Amyotrophic Lateral Sclerosis (ALS)*, also known as Motor Neuron Disease
ALS targets the nerves controlling the muscles of movement including postural muscles eventually disabling those nerves controlling chest breathing. Interestingly nerves regulating the senses, seeing, hearing, touching, tasting and smelling are not affected. Cognition is not affected – dementia is rare.
Incidence
ALS occurs in 2-5 people per 100,000 with slightly more males affected than females. The origin is still a mystery however elite sportsmen and women are disproportionally affected.
The podcast below gives an excellent in-dept explanation of ALS.
Murray, who will be 60 this year, has seen his condition rapidly deteriorate since his 2010 diagnosis. He was asked by his consultant Prof Hardiman last June if he would volunteer for the clinical trial of a new promising drug Dexpramipexole.
While he admitted at the time that he did not expect to be cured, he said that it was his most “fervent wish that the coming years will see giant steps forward in the battle to find a cure”.
“It gives me something to hope for,” he said last June. “It’s a faint glimmer of light at the end of a very dark tunnel.”
*Amyotrophic Lateral Sclerosis
A = lack of: Myo = muscle; Trophic = nourishment;
Lateral = location in the spinal cord; Sclerosis = scarring.
TV3 presenter Sinead Desmond, pictured at the launch of a patient drop-in centre by the Dublin Neurological Institute this week
TV3 presenter Sinead Desmond spoke this week of her near-fatal brain haemorrhage nearly three years ago. At the launch of Ireland’s first drop-in centre for people with neurological disorders, she spoke of her gratitude at emerging unscathed with no brain damage from the experience.
“I have been blessed with a 100pc recovery,” she said. “I met people since who had similar brain haemorrhages and suffered from brain injuries. The recovery can be tough.”
The new centre is housed within the Dublin Neurological Institute at the Mater Hospital in Eccles Street. People with neurological conditions, which include epilepsy, stroke, acquired brain injury, multiple sclerosis, dementia and motor neurone disease, can call in without having to be referred by a GP. They will be able to speak to a specialist nurse, and get free medical information and support.
National Brain Awareness Week runs until Sunday.
