What is Motor Neurone Disease (MND)?
MND specifically causes damage to cells called ‘motor neurones’ which carry messages from your brain to your muscles through your spinal cord. Normally, these messages are what allow you to make deliberate movements such as talking, swallowing, breathing and walking. When MND damages these cells, the muscles become harder to control. This can lead to the muscles weakening and deteriorating, causing loss of strength and mobility. Eventually, MND can lead to paralysis or a loss of ability to use any muscles in your body.
MND is a type of neurodegenerative disease which is uncommon but serious. In Malaysia, it is estimated there are probably more than 2,000 Malaysians with MND and 600 newly diagnosed cases every year, which is around 50 Malaysians diagnosed with MND every month, whereby men are more susceptible compared to women. MND is a debilitating condition that increasingly makes your usual activities difficult or even impossible without adequate support.
Types of Motor Neurone Disease (MND)
There are several different types of motor neurone disease (MND). The type of MND diagnosed is assessed by your doctor, based on which neurones are affected and whether the condition is hereditary or spontaneous.
5 Types of Motor Neurone Disease (MND)
1. Amyotrophic Lateral Sclerosis (ALS)
This is the most common type of MND. It affects both the upper and lower motor neurones, disrupting the brain’s messages to the muscles in the arms, legs, respiratory system and mouth. ALS is a serious condition that can reduce life expectancy, but adequate management can help you or a loved one to lead a longer, more fulfilling life.
2. Primary Lateral Sclerosis
This type of MND affects the neurones in the brain. It is less common than ALS and progresses more slowly. It is typically not fatal but can reduce the quality of life. If primary lateral sclerosis is diagnosed in childhood it is referred to as juvenile primary lateral sclerosis.
3. Progressive Bulbar Palsy (PBP)
PBP affects the brain stem. Many people with ALS have an additional diagnosis of PBP. It often causes problems with the muscles of the mouth, leading to difficulty swallowing, eating and talking.
4. Progressive Muscular Atrophy
A rare type of MND that affects the lower motor neurones of the spinal cord. It causes slow, progressive wasting (atrophy) of the muscles in the legs, arms and mouth.
5. Flail Arm / Flail Leg Variants
A type of MND that can affect the lower motor neurones, leading to progressive weakness in the arms and legs.
These symptoms can vary between individuals, and some people will experience a crossover between the subtypes of MND.
Stages of Motor Neurone Disease (MND)
The stages of motor neurone disease (MND) are defined by the progression of its symptoms. MND is typically categorised into three stages: early, middle and advanced.
Early Stage Motor Neurone Disease (MND) Symptoms
Early-stage symptoms of MND are often mild at first and progress more slowly. During early stage MND, symptoms may be mistaken for other health conditions. Early-stage MND symptoms will depend on what type of MND is diagnosed and where in the body is most affected. Symptoms during early stage MND often first appear in the arms, legs, respiratory system and mouth. Symptoms can include:
- Weakened grip
- Difficulty grasping and holding objects
- Fatigue or exhaustion
- Weight loss due to muscle wasting
- Unpredictable emotional responses (including random laughing or crying)
- Twitching, cramping or main in the muscles
- Weakness in the arms and legs
- Slurred speech
- Loss of coordination including stumbling
- Clumsiness
- Shortness of breath or breathing difficulties
- Difficulty swallowing
Middle Stage Motor Neurone Disease (MND) Symptoms
During middle-stage MND, the early-stage symptoms may become more severe. As it progresses, MND often affects the brain function of the individual. This can bring about memory and language problems and changes to their mental health and emotional state. Additional symptoms that can appear during middle-stage MND include:
- Muscle atrophy (shrinking)
- Difficulty moving
- Breathing difficulties
- Personality changes
- Dementia
- Depression
- Anxiety
- Joint pain
- Drooling as a result of swallowing difficulties
- Uncontrollable yawning
- Jaw pain as a result of yawning
Advanced Stage Motor Neurone Disease (MND) Symptoms
During advanced-stage MND, the early and middle-stage symptoms become even more severe. People in late-stage MND often need help with basic tasks like moving, breathing and eating. These symptoms can become severe and even life-threatening. The majority of deaths from MND are related to a failure of the respiratory system. People may experience additional mental health challenges due to their declining health and mobility during this stage.
Signs and Symptoms of Motor Neurone Disease (MND)
The signs and symptoms of motor neurone disease (MND) can vary depending on what part of the body is most affected. MND symptoms often change and become more severe as the disease progresses.
- Muscle weakness in their legs, sometimes causing trips and falls
- Shoulder weakness, causing problems lifting and holding things
- Difficulty speaking or speech that sounds slurred
- Weakened grip and loss of strength in their hands
- Cramping and twitching of their muscles
- Chewing or swallowing difficulties
- Fatigue
- Muscle wasting
- Respiratory changes
- Cognitive changes
- Emotional changes
- Some people with MND develop a type of dementia
These symptoms tend to progress over time until the individual has little movement and requires assistance to eat, breathe and speak.
What Causes Motor Neurone Disease (MND)?
Motor neurone disease (MND) does not have a single known cause. It is not contagious, meaning you can’t catch it from someone else.
- Virus exposure
- Certain toxins and chemical exposure
- Nerve growth factors
- Growth, repair and ageing of motor neurones
- Immune responses that cause neurone damage or inflammation
- Genetic factors
Approximately 10% of MND diagnoses are thought to be hereditary, due to inheriting a genetic mutation. This means the vast majority of MND cases are spontaneous and occur seemingly randomly. People with a family history of MND may be recommended to undergo genetic testing. People who inherit the genetic mutation that can lead to MND may be at an increased risk of developing the condition. However, not everyone who has the MND genetic mutation will develop MND. MND is a complex condition and is generally thought to be a result of genetic, environmental and lifestyle risk factors.
Risk Factors of Motor Neurone Disease (MND)
Motor neurone disease (MND) can occur at any age, depending on the type. Hereditary MND may be present at birth, but symptoms are more likely to develop from the age of 50 years onwards. MND is more common among men than women.
Genetics can be a significant factor for some types of MND. Spinal muscular atrophy (SMA) is always inherited, unlike other forms of MND. Some (around 1 in 10) cases of Amyotrophic Lateral Sclerosis (ALS) are inherited.
Exposure to certain toxins and chemicals may increase the risk of developing MND. Traumatic head injuries may also increase the chances of MND developing. Studies have highlighted this potential risk factor by demonstrating an elevated rate of MND diagnoses among professional soccer players.
With ongoing medical research, we hope to better understand the risk factors for MND to support better prevention, management and treatment of this disease.
How is Motor Neurone Disease (MND) Diagnosed?
No one test can determine if you have motor neurone disease (MND). Diagnosis is typically made by doing several tests to eliminate other conditions and monitoring symptoms. Diagnosing MND is difficult because symptoms can be very mild at first and resemble symptoms of many other conditions. MND symptoms are also highly variable, with patterns of weakness and progression varying significantly between individuals.
If you or your doctor suspect you may have MND, you should be referred to a neurologist. The neurologist will take your medical history, do a thorough examination and listen to your symptoms. They will likely also do some tests to begin the diagnostic process.
6 Tests That are Often Done During a Motor Neurone Disease (MND) Diagnosed
1. Blood Tests and Urine Tests
These can help rule out other conditions that can cause MND-like symptoms. They can also test for creatinine kinase, a substance produced when muscles are broken down.
2. MRI Brain Scan
MND can not be diagnosed with an MRI scan. MRIs can be used to rule out other conditions like stroke, unusual brain structures and tumours.
3. Nerve Conduction Study (NCS)
This test measures how fast electrical impulses are moving through your muscles.
4. Electromyography (EMG)
This test measures how much electrical activity is taking place in the muscles.
5. Spinal Tap or Lumbar Puncture
Testing of the cerebrospinal fluid to rule out other conditions.
6. Muscle Biopsy
Testing the muscle tissue can help to rule out muscular diseases.
During this diagnosis process, your symptoms will be monitored to track any progression and determine whether or not it is MND.
How is Motor Neurone Disease (MND) Treated?
There is no cure for motor neurone disease (MND) currently available. There is a range of treatments available that can help you to reduce your symptoms and improve your quality of life. The type of treatment recommended will depend on how MND affects you and what stage of MND you live with. Treatment is often focused on retaining mobility and independence and reducing discomfort.
Treatment frequently includes medications, supportive devices for activities like speaking and eating, and physical and psychological therapies. Unfortunately, many people diagnosed with MND die within 2-3 years of acquiring the condition. However, with effective treatment and early intervention, some people live for much longer and with a good quality of life. Patients with late-stage MND may receive palliative or end-of-life care to keep them as comfortable as possible.
Getting Support to Manage Motor Neurone Disease (MND) in Malaysia
If you or a loved one live with motor neurone disease (MND), you will likely be supported by a team of different healthcare professionals. This can include your general practitioner (GP), neurologists, occupational therapists, speech pathologists, psychologists, physiotherapists, social workers and nurses.
In Malaysia, non-profit organisations like MND Malaysia can offer support for people with MND and their families as below:
- Connecting people with MND to UMMC. The University Malaya Medical Centre (UMMC) MND Clinic is the first to initiate and set up a rehabilitation centre for patients with MND in Malaysia in 3 areas – neurology, palliative care, and neurorehabilitation.
- Leasing of palliative care equipment. For Bottom 40% (B40) income group in Malaysia, MND can lease equipment like Medical Respiratory Ventilators (Trilogy-100, Bipap AVAPS Dreamstation, Cough Assist) and Communication Eye Trackers (Tobii) to provide the best possible quality of life at home.
- Organizing events & activities. Initiatives to help people with MND and their families to have a shared community to socialise and stay connected.
- Resources on MND. Educating families about caregiving to support a loved one with MND at home.
Get Home Care and Medical Escort Services with Homage
Early detection and effective management of MND are crucial. At Homage, we offer medical escort service to assist your loved one to and from important hospital appointments, so you can focus on other matters.
As mobility starts to decline, there is a great sense of comfort, dignity and ease that comes with being able to receive support from the privacy of your own home. Homage’s team of experienced, dedicated Care Professionals can support you or someone you love by offering high-quality personal and nursing care like medication administration, feeding through nasogastric tubes (NGTs) and gastrostomies (PEGs), as well as basic personal care tasks.
Get in touch with our Care Advisor today for a free consultation by filling up the details below and let us tolong you in taking care of your loved one.
