Motor Neurone Disease (MND) is the name given to a group of diseases which result in the degeneration of motor neurones. These motor neurones are responsible for communication from the brain to our muscles for required actions we utilise everyday such as movement, speech, swallowing and breathing. MND has several subtypes depending on origin and presentation of symptoms such as Amyotrophic Lateral Sclerosis (ALS), Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA) and Progressive Bulbar Palsy (PBP).
While MND is the generic term used in many countries such as Australia, New Zealand and the UK, you may have heard of several other names used, especially from the United States such as ALS or Lou Gehrig’s disease, after an American baseball player who died from MND. Well known scientist Stephen Hawking died of a rare form of early onset, slow-progressing MND back in 2018. Recently there was a large social media campaign for raising awareness of MND/ALS you may remember, the “Ice bucket challenge”. Whilst the Ice Bucket Challenge went viral back in 2014, several associations and Government’s continue to promote the challenge as a way to raise funds for MND research.
There is no known cause of MND with 90% of cases believed to be spontaneous and 10% of cases being hereditary and linked to a genetic mutation of a gene found in either parent, with this particular gene tested for given a family history. MND is diagnosed via a process of elimination utilising an individuals history of symptoms as well as nerve conduction tests, muscle biopsies and blood tests. Most individuals will pass away within 2-3 years of their diagnosis.
Once diagnosed the main focus on treatment is to minimise symptoms and prolong quality of life. In Australia only one medication is currently approved for use (Riluzole). While research continues to explore other methods for treatment and even a cure for MND, current research has shown that a multidisciplinary team can provide a coordinated response to an individual’s treatment. Below is a table from MND Australia which explains the benefits of each member of the team.
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.
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 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.
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.
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
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 Association Advisor
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.
While exercise is an essential component of treatment for MND, it is important to note that not all exercise is suitable. Exercise should be carried out under supervision of a trained health professional to ensure injuries are avoided. While it is important to increase strength and function during the early stages of MND to increase an individual’s baseline strength and fitness, overtraining can become a concern, particularly during the latter stages of the disease in which individuals may lose function and find it difficult to recover.
Training should focus on cardiovascular exercise, strength training, balance and functional exercises for both upper and lower limbs as well as fine and gross motor skills. Ongoing work for speech pathology and self care techniques should be maintained throughout the treatment process to ensure prolonging of function as well as compensatory techniques once an individual is no longer able to perform a particular task.
If you are looking for additional information regarding MND in Australia, including updates in research or donating, please check out MND Australia’s page at https://www.mndaust.asn.au/Home.aspx