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.
What are the types of MND and how do they progress?
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.
There are four main types of MND. 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.
Amyotrophic Lateral Sclerosis or ALS
ALS is the most common type of MND. Arms and legs are usually affected first. Symptoms may progress to other limbs or affect the muscles across the body. Muscles used for speech, swallowing and breathing are generally impacted later. However, for some people, beathing muscles may be impacted sooner.
Performing everyday tasks, including walking, personal care and preparing meals can become difficult. People may experience frequent trips and falls, and they may find it is difficult to get up off the ground after a fall or find it difficult to get out of bed. People may have trouble picking up and holding objects, managing buttons and zippers or holding and using a pen.
The muscles around the torso and chest, known as respiratory muscles, may also be impacted causing breathlessness, especially when lying flat. Producing an effective cough can become difficult. People may also experience neck weakness and require a supportive collar. Eating, drinking and swallowing may be affected.
Progressive Bulbar Palsy or PBP
PBP initially affects the bulbar region of the brain causing weakness to the muscles around the face, mouth and throat and may progress to the arms and legs later. Bulbar muscles are used for speaking, chewing and swallowing. The respiratory muscles may also be affected. Change to the consistency of saliva and the way it is managed may also be noticeable. People can experience thick saliva or thin watery saliva, or a mixture of both. Breathing and coughing may become difficult. The neck muscles may also become weaker.
Progressive Muscular Atrophy or PMA
PMA can begin in the arms, also known as flail arm or in the legs, also known as flail leg. This type of MND has more generalised muscle wasting and weakness with a slower rate of disease progression. The bulbar muscles are not impacted meaning people with PMA generally do not experience changes to their speech, swallow and chew.
Primary Lateral Sclerosis or PLS
PLS is a rare and slow progressing form of MND. Initial symptoms can vary and present in similar way to other types of MND.
Find out more about the types of MND.
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.
