Motor Neuron Disease (MND) is a term used for a group of neurological disorders that affect neurons (nerves) that control movement. Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s Disease is the most common form of MND.
The brain uses motor neurons to send messages to muscles that allow us to walk, move our hands and arms, talk, swallow and breathe. In MND, these motor neurons breakdown and die, so muscles are unable to move, causing them to weaken and waste.
Who is affected?
About 300 to 400 people are living with MND in Singapore. It is more common in people aged over 50 years and slightly more common in men than women.
At the start, MND usually affects the muscles in one of the following body parts causing the following symptoms:
Over time, more of these body parts are affected. This can occur in any order and by the advanced stage of MND, all of them are affected, causing severe physical disabilities.
Sensory nerves which control sight, hearing, taste, touch and smell are not affected.
Although some persons with MND may describe some brain ‘fogginess’ or suffer dementia, around half of persons with MND continue to think clearly and are fully aware of what is going on throughout their illness.
The cause of MND is not known, although 5 to 10% of people with MND have a family history of the condition.
MND is difficult to diagnose because there is no specific blood test or scan for the condition. Neurologists rely on physical examinations, information supplied by the patient on their symptoms and the exclusion of other possible causes for the patient’s neurological symptoms.
Persons with MND require the support of a multi-disciplinary team to help them live and cope with such a complex and challenging condition.
The team usually includes:
There is currently no cure for MND, but medications, therapies and assistive devices can help people with MND manage and come to terms with their condition.
Medication: drugs to slow down the progression of MND are limited and only have a modest effect, however medication can help manage symptoms such as pain, excessive saliva, constipation, anxiety and depression.
Therapies: support and advice from a range of allied healthcare professionals can help people with MND and their caregivers manage their symptoms and live as independently as possible. Examples include:
Assistive devices: these can help persons with MND manage their symptoms, continue to engage with those around them and live as independently as possible. Examples include communication aids, walking aids or other mobility devices e.g. motorized wheelchairs, orthoses; tools to help with tasks of daily living such as eating, dressing, hygiene; pressure relief mattress/ cushion; hospital bed; feeding tube; ventilator
Counselling and support: feelings of hopelessness and depression are relatively common due to the lack of a cure and severe disability MND causes. Counselling and strong social support can help people with MND and their family members come to terms with the diagnosis, find positive meaning in life and find ways to cope with the condition.
Advance care planning: MND is a life-limiting condition and communication challenges are common because it affects speech. Advance care planning in the early stages of the disease helps ensure the person’s goals, values and care wishes are respected throughout their illness and when they pass on.
MND is one of the most complex and severely physically disabling conditions. Disease progression varies so it can be difficult to provide accurate life expectancy. The majority of patients live for two to five years after diagnosis, but about 10% will survive for more than 10 years.
For details about the NNI MND Support Group, please click here.
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