Skip to main content

61 02 8877 0999 FREECALL 1800 777 175

DONATE NOW

Types of MND and progression

MND can be classified into four main types depending on the pattern of motor neurone involvement and the part of the body where the symptoms begin. Sometimes MND is diagnosed without specifying a type. This is because MND is difficult to diagnose, and the neurologist may need to observe changes overtime to determine the type of MND.

Types of MND/ALS

Amyotrophic lateral sclerosis (ALS)

  • ALS is the most common form accounting for about 70% of cases of MND
  • both upper and lower motor neurones are affected
  • limb muscle weakness and wasting.

ALS is the most common type, characterised by muscle weakness and stiffness, over-active reflexes and, in some cases, rapidly changing emotions. Initially the limbs cease to work properly. The muscles of speech, swallowing and breathing are usually also later affected. ALS is the term commonly applied to MND in many parts of the world.

Progressive bulbar palsy (PBP)

  • PBP accounts for around 20% of cases of MND
  • both upper and lower motor neurones are affected
  • speech and swallowing muscle weakness and wasting.

When ALS begins in the muscles of speech and swallowing it is designated PBP. PBP, mixed bulbar palsy and pseudo-bulbar palsy involve the muscles of speech and swallowing. The nerves that control these functions are located in the bulb (the lower part of the brain), hence the term bulbar palsy (paralysis). The limb muscles may also later be affected.

Progressive muscular atrophy (PMA)

  • PMA is a rare form of MND that accounts for around 5% of cases of MND
  • lower motor neurones are affected
  • slower rates of progression and significantly longer survival compared to ALS and PBP.

PMA is characterised initially by lower motor neurone signs resulting in more generalised muscle wasting and weakness, absent reflexes, loss of weight and muscle twitching. PMA can be the hardest form of MND to diagnose accurately. Recent studies indicate that many people diagnosed with PMA subsequently develop upper motor neurone signs. This would lead to a reclassification to ALS. PMA may begin in the arms (flail arm type) or the legs (flail leg type).

Primary lateral sclerosis (PLS)

  • PLS is most rare form of MND accounting for roughly 3% of cases of MND
  • upper motor neurones are affected
  • diagnosis is often provisional.

What is Kennedy’s disease?

Kennedy’s disease is a disorder of motor neurones which is not motor neurone disease. It is an inherited disorder affecting adult males causing slowly progressive weakness and wasting of muscles with only lower motor neurone involvement and other features.

Reference: Types of MND: ALS, PLS, PBP, PMA, MND/FTD | MND Australia

How does MND progress?

Progression of MND, also known as Lou Gehrig’s disease and ALS, can vary depending on the site of symptom onset, the type of MND and from person-to-person. The site of symptom onset means the place in the body where changes occurred first.

Each person diagnosed with MND will experience the disease differently. Symptoms may occur in a different order and may occur at a different rate. For some people, symptoms can progress overtime while others can experience more rapid progression.

As MND is different from person-to-person, it is difficult to predict how MND will progress. Your neurologist is the best person to speak with about how MND may impact you.

Does MND shorten life expectancy?

MND is a life limiting illness and does shorten life expectancy.

Find out more about life expectancy and MND.

Can the progression of MND be managed?

Although treatment options that slow progression of the disease are currently limited, there are ways to manage the symptoms of MND and to improve quality of life.

The following supportive interventions are considered best practice in MND care and have been shown to support better quality of life and to also prolong life. Along with this, there are a range of symptom management strategies available to respond to each MND symptom. Accessing the right support and equipment can help manage symptoms and support quality of life.

Riluzole

Riluzole is a medication that can be prescribed by a neurologist. It may result in modest slowing of progression of MND by around 6-19 months. Riluzole will not be suitable for everyone diagnosed with MND, speak with your neurologist about riluzole.

Find out more about riluzole.

Respiratory care

It is common for people living with MND to use non-invasive ventilation (NIV). We recommend being assessed by a respiratory specialist soon after diagnosis, even if you have not noticed respiratory change. This will give a baseline to assess against in the future. People with MND are usually prescribed a bi-level positive airway pressure machine, known as BiPap to support their breathing. Research suggests that good respiratory care may improve quality of life and may also prolong life.

Find out more about breathing and MND and watch a video about NIV

Multidisciplinary care

Multidisciplinary care is a term used to describe coordinated input from a range of health and community care professionals. Health professionals can recommend symptom management strategies and prescribe equipment from the FlexEquip loan library. Research suggests that multidisciplinary care has been shown to improve quality of life and prolong life.

Find out more about multidisciplinary care

Nutritional care

Maintaining weight and nutrition helps with wellbeing and overall health. Maintaining weight and nutrition can have a positive impact on survival time for a person living with MND. Some people with MND choose gastronomy (a feeding tube) to assist with nutrition which may prolong life.

Find out more about nutritional care and maintaining weight

Equipment: FlexEquip

Equipment and aids such as bathroom aids, shower commodes, walking aids, transfer aids and communication aids play an important role in supporting people with MND to live better for longer. FlexEquip is a service of MND NSW which provides equipment to people with MND.

Summary

  • The rate of disease progression varies depending on the site of symptom onset, the type of MND and from person-to-person
  • There are ways to manage the symptoms of MND to improve quality of life and to prolong life
  • Your neurologist is the best person to speak with about how MND may impact you
  • Accessing support early is important
  • We can support you to link with the services you need.