Although there is currently no cure, a great deal can be done to maintain quality of life and address many of the effects of motor neurone disease (MND).
Before trying a therapy
People living with MND are encouraged to discuss any therapies they hear about with their neurologist, GP or care team. This is because these therapies can be harmful or may already have been shown to have no effect on the progression or MND.
Resources currently available to assist people to make informed decisions about alternative and unproven treatments include:
There is one medication approved for treatment of MND in Australia – riluzole (sold as Rilutek™ or APO-Riluzole). Riluzole probably prolongs median survival by two to three months. Research indicates that people who start taking riluzole early in their disease progression are more likely to remain in the milder stages of the disease for longer than those not taking riluzole.
View Riluzole pdf
Multidisciplinary care – a network of health professionals
Multidisciplinary teams give the person with MND access to a range of health professionals who work together to provide a coordinated response to care. Since the progression and symptoms of MND vary from person-to-person, so too the make-up of health professionals in the team varies. A multidisciplinary care team for people with MND usually includes:
The general practitioner (GP) is usually the first and primary person of contact for people with MND. GPs can carry out the basic neurological examination, and recognise symptoms which indicate the need for referral to a neurologist. The GP will then liaise with the neurologist, other specialists and allied health care providers in order to provide the best possible standard of care to maintain quality of life.
The role of the neurologist is to undertake tests which diagnose MND and exclude other conditions which may be amenable to different treatments. The neurologist will be able to monitor the progress of the disease and help to initiate supportive care at appropriate times. Sometimes, the neurologist may encourage a person to seek a second opinion from another neurologist.
An occupational therapist (OT) helps to maintain mobility, function and independence. OTs can advise on different ways of performing tasks and the selection, acquisition and adaptation of disability aids. Occupational therapists can visit private homes to advise on equipment or home alterations.
A physiotherapist helps to maintain the physical activity and mobility of the body, make the most of muscle strength and alleviate or prevent joint stiffness and pain caused by wasting, spasticity and cramps. Physiotherapists can instruct carers in a range of passive exercises, and the techniques of positioning and transfer to avoid injury to themselves or the person with MND.
An orthotist can construct and fit braces and spints that provide support and increase mobility.
A speech pathologist (SP) helps in the management of communication and swallowing problems. Communication aids range from simple manual systems such as alphabet boards, to voice-synthesising computers that can be operated from a single soft-touch switch. Speech pathologists can assess and advise on different swallowing techniques, food preparation and selection. This may be done in collaboration with a dietitian who can provide dietary and nutritional advice.
Community or district nurse
A community or district nurse can provide a range of nursing and ancillary services to people in their own homes. Services are usually obtained by referral from a health professional such as a GP. Provision of services varies from state-to-state so check with a GP or your state MND association.
Social worker, psychologist or counsellor
A social worker, psychologist, or accredited counsellor provides counselling on the psychological and emotional aspects of MND. In addition, a social worker offers advice on legal and accommodation services, and financial supplements available in the local community, or through Federal, state, territory or local government programs.
Palliative care specialist
Palliative care specialists can help with emotional support and advance care planning. They can also advise about medications to manage breathing difficulties and pain. There are now several MND-specific clinics and programs of care in Australia. Contact your state MND association for more information.
MND Advisors assist people with motor neurone disease connect to the services they need. MND Advisors also offer ongoing information to families and service providers as questions arise or needs change. For more information contact your state MND association.
Podiatrists are experts in foot, ankle and lower limb health.
See information on multidisciplinary care and multidisciplinary team care.