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Amyotrophic Lateral Sclerosis (ALS) is a progressive neurological condition that affects the motor neurons — the nerve cells responsible for controlling voluntary muscle movement.

ALS is the most common type of motor neurone disease and involves the gradual degeneration of neurones which subsequently causes muscle weakness and paralysis, eventually impacting speaking, swallowing and breathing. ALS impacts both upper and lower motor neurons.

In Australia, the average age of diagnosis is between 50 and 70 years, and men are slightly more likely than women to develop ALS. It is considered a rare condition, with around 2 people per 100,000 affected each year. While ALS has no known cure, physiotherapy and a multidisciplinary care approach play an important role in maintaining quality of life, independence, and mobility for as long as possible.

Signs & Symptoms

The symptoms of ALS vary between individuals and often begin subtly, making early diagnosis difficult. The earliest signs are usually muscle weakness or stiffness, which gradually worsen over time. ALS can be classified by the location in which the onset of symptoms first commences i.e. spinal onset in which the limbs are affected (most common) or bulbar-onset in which the symptoms include speaking and swallowing difficulty.

Common signs and symptoms include:

  • Progressive muscle weakness, particularly in the arms and legs
  • Muscle twitching (fasciculations) and cramping
  • Muscle wasting (atrophy), especially in the hands, arms, shoulders, and legs
  • Slurred speech or difficulty projecting the voice
  • Trouble swallowing (dysphagia)
  • Difficulty with fine motor tasks (e.g. buttoning clothes or writing)
  • Changes in walking pattern, frequent tripping, or balance issues
  • Emotional lability
  • Difficulty breathing due to weakened respiratory muscles (later stages of the condition)

Importantly, ALS does not typically cause pain in the early stages, though secondary issues such as joint stiffness or spasticity may lead to discomfort. It is also important to note that ALS is unlikely to have a sensory impact.

Causes and Contributing Factors

The exact cause of ALS remains unknown in most cases. Around 90% of cases are considered sporadic, meaning they occur without a clear family history. Other cases are classed as familial, meaning they are as a result of genetic mutations.

It is important to remember that ALS is not contagious and does not appear to be caused by lifestyle factors such as diet or exercise. The precise triggers/causes of this disease are still being researched but the below may play a role in this condition:

  • Genetics: Mutations in genes such as SOD1, C9orf72, and TARDBP are known to contribute to familial ALS.
  • Environmental Exposures It is suggested that there are possible links between ALS and exposure to toxins (e.g. pesticides, heavy metals), although this link is still inconclusive.
  • Glutamate Toxicity: An excess of the neurotransmitter glutamate in the brain and spinal cord may damage motor neurons.
  • Oxidative Stress and Inflammation: Imbalances in free radicals and inflammatory responses are suspected to contribute to neuronal damage.

Grading

ALS does not have a universal staging system like some other diseases, but clinicians may use various functional rating scales to assess progression. One commonly used tool is the ALS Functional Rating Scale – Revised (ALSFRS-R). It scores 12 areas of daily function (e.g., walking, speaking, breathing, dressing) on a scale of 0 to 4, with a maximum score of 48. Lower scores indicate more significant functional impairment.

Another method is to describe ALS progression in three broad stages:

  • Early Stage: Mild weakness, stiffness, or slurred speech; minimal interference with daily activities.
  • Middle Stage: Worsening muscle weakness, mobility issues, increased fatigue; need for assistive devices or modified routines.
  • Late Stage: Severe muscle weakness, respiratory failure, difficulty swallowing and speaking; high dependence on carers and supportive technologies.

Prognosis

ALS is a progressive condition with no cure, and it typically leads to significant disability. However, the rate of progression varies greatly between individuals. Most people with ALS live between 2 to 5 years after diagnosis, though some live much longer — especially with supportive care.

Factors influencing prognosis include:

  • Type of onset (bulbar-onset may progress faster than limb-onset)
  • Age at symptom onset
  • Rate of symptom progression
  • Access to multidisciplinary care, including physiotherapy and respiratory support

Research into treatments and potential disease-modifying therapies is ongoing, offering hope for improved outcomes in the future.

Treatment

While there is no cure for ALS, a comprehensive care approach can help manage symptoms, slow progression, and maximise quality of life. Treatment involves a team of healthcare providers including neurologists, physiotherapists, occupational therapists, speech pathologists, dietitians, respiratory therapists, and palliative care specialists.

Physiotherapy and Rehabilitation

Physiotherapy plays a key role in supporting function, reducing complications, and maintaining mobility throughout all stages of ALS. Goals are tailored to the individual and change over time as the disease progresses. The key components of Physiotherapy management include:

  • Maintaining Mobility:
    • Individualised exercise programs can help maintain joint range of motion, reduce stiffness, and delay muscle contractures.
    • Gentle stretching and low-impact aerobic activity (like walking or cycling) can support cardiovascular health and mobility.
  • Strength and Endurance:
    • Maintaining strength in unaffected muscles can aid function and reduce fatigue.
    • Pacing strategies can help to manage fatigue.
  • Respiratory Training:
    • Techniques such as diaphragmatic breathing exercises, supported coughing, and chest mobility work can assist in maintaining lung capacity.
  • Falls Prevention and Equipment Prescription:
    • Physiotherapists assess gait and balance, prescribe mobility aids (e.g. walkers, orthotics).
  • Positioning and Pressure Care:
    • Advice on supportive seating, pressure cushions, and appropriate bed positioning helps prevent discomfort and pressure injuries.
  • Carer Education:
    • Family members and carers are supported with safe manual handling techniques and exercise assistance.

Medical Management

  • Medications:
    • Riluzole is the most commonly prescribed medication in Australia and may slow disease progression slightly by reducing glutamate levels.
    • Edaravone is another option, currently available through private prescription or clinical trials in some settings, with potential benefits in early-stage ALS.
    • Medications may also be used to manage spasticity (e.g. baclofen), excess saliva (e.g. atropine drops), or mood changes.
  • Respiratory Support:
    • Non-invasive ventilation (e.g. BiPAP machines) helps with breathing, especially during sleep, and can improve quality of life.
    • Cough assist devices or suction machines may help clear secretions.
  • Nutritional Support:
    • A high-energy diet may be recommended, and in later stages, a feeding tube (PEG) might be necessary if swallowing becomes unsafe.

Other Allied Health Involvement

  • Occupational therapists support daily living through home modifications, energy conservation techniques, and adaptive equipment.
  • Speech pathologists assist with communication strategies, swallowing assessment, and augmentative communication devices if speech is lost.
  • Psychologists provide mental health support to patients and families coping with the emotional impact of the condition.
  • Dietitian can offer nutritional support and recommend a high-energy diet if required.