I recently interviewed Maeve Leahy.
She is the PR, Communications & Fundraising Officer of Irish Motor Neurone Disease.
What is your service called?
The Irish Motor Neurone Disease Association (IMNDA) is the primary support organisation for people living with Motor Neurone Disease (MND). There are currently over 350 people living with MND in Ireland.
MND is often referred to as the 1,000 day disease as most people die within 1,000 days of being diagnosed.
When and why was it established?
It was set up in May 1985 to provide care and support to people with Motor Neurone Disease, their carers, families and friends.
What does your service supply?
Our key services include:
*Home visiting by our two MND Nurse Specialists
*Financial assistance towards home care
*Providing specialist medical equipment free of charge to our clients
*Supporting research into the causes and treatments of MND
*Freefone Helpline & Information service for clients
What is Motor Neurone Disease?
Motor Neurone Disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord.
This means messages gradually stop reaching the muscles, which leads to weakness and wasting.
MND can affect how you walk, talk, eat, drink and breathe.
However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.
The cause of MND is not known.
There may be environmental factors that trigger the damage in people who are susceptible to the disease.
Ongoing research is necessary to find out the nature of these environmental factors, and what makes one person more susceptible than another.
MND strikes people of all ages and currently there is no cure.
How is it diagnosed?
Usually it is not difficult for a Neurologist to diagnose MND on the basis of the history and signs.
Early signs may cause some initial difficulty.
There is no specific laboratory test. Sometimes special tests, possibly including a brain and spine MRI, are necessary to exclude other diseases. Usually, electrical tests on muscles and nerves are performed and a lumbar puncture and muscle biopsy may be done.
What are the symptoms?
MND presents itself in various ways, depending on the particular groups of muscle fibres which degenerate initially. Wasting and weakness of muscles of the hands, sometimes one side a first, stiffness in the legs with dragging of one leg or the development of marked weakness in the legs may be the initial symptom.
Sometimes the muscles of the tongue and swallowing mechanism are affected early, with slurring of speech, difficulty in swallowing and coughing.
The disease may remain relatively stationary for some time or may progress to other limbs, to the tongue and to the breathing muscles.
Death in MND is usually caused by the combined involvement of the swallowing and breathing muscles, causing a severe pneumonia.
For a full list of common symptoms please see:http://imnda.ie/about-mnd/common-symptoms-and-effects-of-mnd/
What treatment is available?
Please see – a lot of very beneficial info here on this http://imnda.ie/wp-content/uploads/2014/03/More+About+MND+Brochure.pdf
Is it heredity?
Approximately 10% of people diagnosed with MND will have an inherited, or familial, form.
This form of MND is extremely rare; the great majority of people diagnosed with MND (90%) have the sporadic form, occurring for no known reason.
Is there a cure?
There is no cure, however symptoms can be managed to help the person achieve the best possible quality of life
What medication is used?
The drug Riluzole (Rilutek) has shown to be helpful in slowing down the progress of the disease by about 3 months.
PR, Communications & Fundraising Officer
Ph: 01 873 0422
Fax: 01 873 1409