+What is MND?
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.
+What are the different types of MND?
There are four main types of MND, each affecting people in different ways. There can be a great deal of overlap between all of these forms, so, while it is useful to separate the various types of the disease, in practise it is not always possible to be so specific.
We give brief definitions here, but further detail is in “Your Personal Guide to MND” which is available from the Services Department in our offices, Freefone 1800 403 403 (Note this publication is free to all registered MND clients)
The following definitions talk about life expectancy, so you may not want to read any more at this stage.
Amyotrophic Lateral Sclerosis (ALS) – This is the most common form, with both upper and lower motor neurone involvement. This form of the disease is characterised by weakness and wasting in the limbs. Someone may notice they are tripping when walking or dropping things. Average life expectancy is from two to five years from onset of symptoms. Can also be known as Lou Gehrig‘s disease.
Progressive Bulbar Palsy (PBP) – Affects about a quarter of people diagnosed, and involves both the upper and lower motor neurones. Symptoms may include slurring of speech or difficulty swallowing. Life expectancy is between six months and three years from onset of symptoms.
Progressive Muscular Atrophy (PMA) – Affects only a small proportion of people, mainly causing damage to the lower motor neurones. Early symptoms may be noticed as weakness or clumsiness of the hand. Most people live for more than five years
Primary Lateral Sclerosis (PLS) – A rare form of MND involving the upper motor neurones only, causes mainly weakness in the lower limbs, although some people may experience clumsiness in the hands or speech problems. Life span could essentially be normal, although it may be life-limiting, depending on whether it remains as pure PLS or develops into ALS.
Kennedy’s Disease – Kennedy’s Disease and MND have similar traits, which can cause confusion during diagnosis. Kennedy’s Disease is a slowly progressive disorder of the motor neurones that is caused by a genetic mutation. It is a rare form of muscular atrophy leading to weakness. Although it is not classed as one of the types of MND, it is included in the conditions supported by the MND Association. It only affects men, but women may carry the mutation. It is possible through gene testing to determine an accurate diagnosis for Kennedy’s Disease. The disease is compatible with a normal life span.
+What Causes MND?
Many theories have been proposed – viral infection, environmental poisons, metabolic disturbance and genetic defects. In the vast majority of cases of MND, there is no history of the disease in any of the immediate family members (grandparents, parents, brothers or sisters). This is called “sporadic MND”, because the disease appears for no apparent reason. However, in about 20% of cases, family history of the disease indicates that inherited genetic damage causes the condition; this is termed “familial MND”.
+Is there a cure for MND?
At present there is no cure, but co-ordinated research is being carried out across the world and encouraging progress is being made. For More information about current research and the research blog please visit www.mnd.ie/current-research/
+How common is MND in Ireland?
There are approximately 350 people living with MND in Ireland, at any one time. Annually approximately 130 people in Ireland are diagnosed. MND can affect adults at any age but most people diagnosed with MND are over the age of 50.
+What help is available?
Many of the symptoms and subsequent problems can be effectively alleviated by your consultant or G.P. In addition, other professionals such as the physiotherapist, occupational therapist, nurse, social worker, speech therapist and dietician, can be an invaluable source of help. A range of leaflets dealing with specific problem areas is available from the association on request.
+Can MND be reversed?
Within the bounds of current knowledge, it would seem that the process of motor neurone degeneration is irreversible. As the first affected motor neurones start to degenerate in MND, the brain will learn to compensate for their loss so that initially there are no noticeable symptoms. The first symptoms will only appear when the number of motor neurones damaged is so great that compensation is no longer possible. Therefore, a significant number of neurones will have been lost well before somebody is aware that they have MND and can even begin to think about treatment.
+What is Rilutek?
Rilutek (Riluzole) is the first and, to date, only drug licensed for the treatment of Motor Neurone Disease. It is not a cure, it does not prevent, halt or reverse the disease but it has been shown to have an effect in extending life in both the limb and bulbar onset forms of MND. In studies, patients taking Rilutek were shown to have a modest increased life expectancy.
+What are Stem Cells?
Stem cell research is a novel area of research that has fuelled hope of a treatment for a variety of conditions including MND. Much of the excitement surrounding stem cell research arose from the idea that embryonic stem cells, which have the potential to grow into any type of cell, could possibly be used to replace diseased neurones. However, there are many unanswered questions surrounding the use of stem cells in MND. For example: How can we direct new neurones to make the correct connections? How can we replace motor neurones that may be up to a metre long when the new cells can only grow extremely slowly? Although the use of stem cell therapy for MND may eventually be possible, the general perception among scientists and clinicians in the MND research community is that the research is not currently sufficiently well advanced. In Ireland, embryonic stem cell research is currently not allowed. The UK is currently one of the world leaders in embryonic stem cell research.
+Am I entitled to any benefits?
It may seem complicated and possibly overwhelming but there are plenty of people and organisations who can give you specific help and advice in the area of work, benefits and finances:
Citizen’s Information website is very informative www.citizensinformation.ie but if you do not get the answer to your questions please call 0761074000 – Opening; 9am to 8pm Monday to Friday.
Department of Social Protection, Disability and Caring section of www.welfare.ie –
1890 662244 (Lo call), opening times 9.30am to 5.00pm Monday to Friday.
Social welfare or grant information leaflets call 1890 202325 (Lo call) from within the Republic of Ireland 24 hours a day 7 days a week. *Please note this number is for leaflet requests only so you will not be able to talk with an operator personally.
In addition, you could contact the Illness Benefits & Occupational Injury Enquiry Line (01) 704 3300.
Furthermore your diagnosing consultant should have a medical social worker attached to their team who will be able to advise on what benefits are available and how you can access them.
+Can I still drive even though I have MND?
You can still drive once your consultant neurologist has deemed it safe to do so. However, you must notify your insurance company of your diagnosis. Failure to do so may invalidate your insurance policy. Your insurance company may require confirmation of your ability to drive from your consultant neurologist.
Contact the Road Safety Authority http://www.rsa.ie/RSA/Licensed-Drivers/Safe-driving/Medical-Issues/ or Irish Wheelchair Association www.iwa.ie for more information.