Motor neurone disease (MND)
Motor neurone disease (MND)
Motor neurone disease (MND) is also called amyotrophic lateral sclerosis (ALS) and Lou Gehrig’s disease. It is a rapidly progressing, neurological disease.
MND often begins with weakness of the muscles in the hands, feet or voice, although it can start in different areas of the body and progress in different patterns and at different rates. People with MND become increasingly disabled. Life expectancy after diagnosis is one to five years, with 10 per cent of people with MND living 10 years or more.
The needs of people with MND are complex and vary from person to person.
Symptoms of motor neurone disease (MND)
The physical effects of motor neurone disease can include:
muscle aches, cramps, twitching
clumsiness, stumbling
weakness or changes in hands, arms, legs and voice
slurred speech, swallowing or chewing difficulty
fatigue
muscle wasting, weight loss
emotional lability – for example, where a slight upset can cause an exaggerated response, such as crying or laughing
cognitive change (changes in thought processes)
respiratory changes.
It was thought that MND only affected the nerve cells controlling the muscles that enable people to move, speak, breathe and swallow. However, it is now known that up to 50 per cent of people with MND can experience changes in cognition, language, behaviour and personality. Most people experience relatively mild changes.
Causes of MND
The causes of MND are unknown, but worldwide research includes studies on:
exposure to viruses
exposure to certain toxins and chemicals
genetic factors
inflammation and damage to neurons caused by an immune system response
nerve growth factors
growth, repair and ageing of motor neurons.
Familial (hereditary) MND accounts for about five to 10 percent of cases. Several gene mutations have been identified since 1993, and current research aims to identify further genes linked to MND. The majority of cases, 90 to 95 per cent, are sporadic.
Effects of MND
People who have MND may:
develop generalised paralysis (paralysis of both sides of the body)
lose speech and have difficulty swallowing
become breathless and experience sleep disturbance
experience mild cognitive and behavioural change
become increasingly dependent on others for all aspects of day-to-day activity.
Impact of MND on carers
As MND progresses, the person’s physical condition will change rapidly, and require increasing assistance from a carer. Over time, both the carer and the person living with MND will need increasing levels of support, both physically and emotionally.
Carers can seek support through:
Carers
Victoria
External Link
(Tel.
1800 242 636
) or through the
carer association in their state or
territory
External Link
MND
Victoria
External Link
.
Treatment for MND
MND is still incurable, but it is not untreatable, as many symptoms can be managed. The drug riluzole – available on the Pharmaceutical Benefits Scheme – has been demonstrated in clinical trials to prolong survival by several months and may help people to remain in the milder phase of the disease for longer.
Research has shown that people live better and longer under the care of a multidisciplinary team. Interventions such as assistance with nutritional intake and breathing improve quality of life.
Costly and unproven therapies are sometimes recommended by well-meaning people. Seek professional advice before trying unproven therapies.
Coping with the effects of MND
MND
Victoria
External Link
can help people to cope with the physical and emotional effects of the diagnosis by providing:
information about MND and support services via telephone, email, in person, printed and via the MND Victoria website
MND
Advisor
External Link
service
home visits, and assessment of the needs of people living with MND
help to connect to services that people need, such as speech pathology, occupational therapy, physiotherapy, attendant care and nursing
equipment loan service or referral to other agencies for equipment
volunteer programs.
Where to get help
Your
GP (doctor)
Specialist neurologist
MND
Victoria
External Link
Tel:
1800 777 175
Department of Families, Fairness and
Housing
External Link
Tel.
1300 475 170
Disability, Sickness and Carers line, Centrelink Tel.
13 27 17
NDIS
External Link
My Aged
Care
External Link