Supporting Someone with Motor Neurone Disease (MND)

Life can look very different for those living with motor neurone disease and everyone’s journey will be unique. As a loved one, your priority will likely be prioritising their comfort, peace of mind, and safety. While these factors are universal, there are also other things you can do to support them through their illness.

Caring for someone with motor neurone disease is challenging.

There are 3 stages of MND:

• Stage 1: Early stage
• • • muscle weakness
    • speech and swallowing issues
    • mild mobility issues

• Stage 2: Middle stage

• • • Symptoms become progressive.

• Stage 3: Late stage

• • advanced muscle weakness
  • loss of mobility
  • breathing difficulties 
  • communication limitations.

Whether you are confronted with a new diagnosis of motor neurone disease for someone you care for or you have been providing a patient with motor neurone disease support for a long time, there are a lot of important factors to consider.

There are many treatment options to manage the symptoms of motor neurone disease, and the NDIS plan management services along with NDIS garden maintenance can also provide additional support to make the difficulties of the illness that much easier to digest.

What is Motor Neurone Disease (MND)?

Motor Neurone Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS) in some regions, is a devastating and progressive neurodegenerative disorder that primarily affects the motor neurons in the brain and spinal cord. These motor neurons are responsible for controlling voluntary muscle movements throughout the body. 

MND is categorised by several significant features:

• Loss of functions – MND results in a gradual loss of motor functions, such as muscle control and movement. As the disease progresses, your loved one may experience muscle weakness, leading to difficulties with mobility, speech, swallowing, and other essential daily activities.
• Lateral sclerosis – In some cases, MND is referred to as Amyotrophic Lateral Sclerosis (ALS), indicating the hardening (sclerosis) of the lateral region of the spinal cord. This hardening is a result of the degeneration and scarring of motor neurons (nerve cells) in the spinal cord.
• Muscle cramps – Muscle cramps and twitches are common early symptoms of MND. These can progress to muscle stiffness and spasticity as the disease advances.
• Frontotemporal dementia – Some people living with MND may experience cognitive changes, including frontotemporal dementia (FTD), which can affect memory, personality, and decision making. 
• Muscle atrophy – Muscle atrophy (shrinkage) is a hallmark of MND, as the affected motor neurons die off, and the muscles they control break down. This leads to a progressive loss of muscle mass and strength.
• Respiratory failure – In advanced stages, MND can impact the muscles involved in breathing, resulting in respiratory difficulties. Many patients with MND will require respiratory support to assist with breathing.
• Emotional liability – Emotional liability is a common symptom of MND, your loved one may experience uncontrolled emotional responses, such as uncontrollable laughter or crying, this can be unrelated to their actual emotions.

Care options for MND

Unfortunately, medical scientists are still working on a cure for motor neurone disease. In the absence of one, the primary focus shifts towards providing holistic care aimed at symptom management and enhancing quality of life. This journey is often multifaceted, involving palliative care, physical therapy, speech therapy, assistive devices, respiratory support, occupational therapy, nutritional support, and medication management. 

Above all, emotional support from therapists, medical professionals and family members is essential for navigating the complex challenges and emotional burdens that come with an MND diagnosis. Care options can be tailored to the specific needs of your loved one and you may find they need to evolve as the disease progresses. 

What are the 3 stages of MND?

To better understand how to support a loved one with motor neurone disease it’s a good idea to learn more about what to expect from their diagnosis. MND most often begins with muscle weakness in the hands, feet, or voice, although it can present in different parts of the body with varying patterns, symptoms, and rates of progression. People with MND become increasingly disabled as the disease progresses with a life expectancy of one to five years after diagnosis. Only 10 percent of people with ASL live 10 years or more after diagnosis.

People living with MND have complex and varying needs. There are 3 main stages of MND however each disease progresses at different speeds and vary widely in severity. 

Early Stage

During the early stage of MND symptoms develop slowly and may resemble similar symptoms of other health conditions which makes it difficult to diagnose. These symptoms depend on the type of MND and the area of the body that is affected by it. 

Typical early symptoms may start in any of the following areas:

• The arms and legs
• The mouth
• The respiratory system

Symptoms at this stage can include:

• a weakening grip, which makes it hard to pick up and hold things
• fatigue
• muscle pains, cramps, and twitches
• slurred speech
• weakness in the arms and legs
• clumsiness and stumbling
• difficulty swallowing
• trouble breathing or shortness of breath
• inappropriate emotional responses, such as laughing or crying
• weight loss, as muscles lose their mass

Middle stage

As the condition progresses, the early symptoms become more severe. In addition to the early symptoms people may also experience:

• muscle shrinkage
• difficulty moving
• joint pain
• drooling, due to problems with swallowing
• uncontrollable yawning, which can lead to jaw pain
• changes in personality and emotional states
• difficulty breathing
• Memory and language problems
• They may develop dementia
• Experience insomnia, anxiety and depression

Advanced stage

Eventually someone who has ALS will most likely require help or assistance with any or all movement, eating and breathing. The advanced stage of ASL becomes life threatening and the most common cause of death is from breathing problems.

How To Support Someone With Motor Neurone Disease

Watching a loved one take on the burden of a disease like motor neurone disease can be frightening and you may feel the effects first hand. Your loved one will require extra support to continue living a good quality of life. It involves making life as normal as possible for them while supporting them through the progression of their condition.

Learn all you can about the disease – inform yourself about the disease, what the symptoms are, and how to manage it. This will have a huge impact on helping you and your loved one deal with it. Do lots of research from reputable sources such as the Motor Neurone Disease Association, or go to doctors appointments with your loved one and ask questions. By being well informed, you’ll be better equipped to manage the disease with them.

Help with everyday tasks – day-to-day activities that we all have to do like cooking, cleaning, bathing, or shopping can become increasingly difficult for people with a neurodegenerative disorder. The simple things that we take for granted can take a lot longer to achieve, and people living with the disease may be too proud or embarrassed to ask for help. You can help by offering to take off the burden of running to the store, cooking a meal, picking up medication, or doing chores. 

Exercise – being active is important for us all, but especially for those living with motor neurone disease. The motor neurone disease Foundation Quality Improvement Initiative found that certain exercises can maintain strength and reduce stiffness as well as having a potentially neuroprotective effect by helping the brain produce dopamine, an essential neurochemical involved in movement.

Listen to them – Let them talk about their emotions and let them know you’re listening. Living with a degenerative and unpredictable disease can induce anxiety and depression which are both common side effects of motor neurone disease.  This can be diminished by having the support of the people around them.

Keep an eye out for new symptoms – Be aware of any changes or worsening of symptoms such as difficulties with walking, speech, balance, fatigue, or coordination. These symptoms will likely progress over time. Depression is also a common symptom and, without treatment, can lead to faster physical decline. Help them get the support they need from a doctor or therapist.

Be patient – the common symptoms of motor neurone disease such as losing strength, speech and movements are likely to be disconcerting. Make time and don’t rush them. Speech and physical therapy can help with these symptoms, but if they get worse, encouraging them to use alternatives such as a walker or wheelchair and other forms of communication will help them to get around and communicate.

Stay as normal as possible – talk about and continue to do things they love. You may need to think outside the box and make adjustments, but the more normal their life stays, the healthier they will be. Try to keep their spirits high by not focusing on the disease.

how to talk to someone with motor neurone disease – approach with empathy and patience, allowing them to communicate at their own pace, whether through speech, gestures, or assistive devices, and actively listen to their needs and preferences.

Supporting a loved one through motor neurone disease can be frightening, confusing, and isolating. Our specialists at Maple Community Services have a lot of experience and are ready to help in whatever capacity you need us. Get in touch with us and take the first step in finding productive solutions together.

Caring for Someone with Motor Neurone Disease

Caring for a loved one with MND can take its toll on you which is why it’s imperative not to disregard your own needs as well. The type as well as the stage of your loved ones condition will determine the level of care they might need from you and as the disease progresses they are likely to require additional support. 

At the beginning of a diagnosis they will likely be able to continue taking charge of their own care with minimal assistance but eventually they will need you to take the lead. When it comes to caring for someone with motor neurone disease there are a number of practical considerations to keep in mind.

Home Comfort

It is likely your loved one will experience levels of each of these symptoms throughout the progress of their disease. Here are some things you can do to help to alleviate their symptoms:

Tiredness – help them conserve energy by promoting healthy sleeping patterns, making sure their bedroom is a quiet and comfortable space, planning activities in advance, taking regular breaks, using gadgets to make tasks easier.

Pain and stiffness – help them to alleviate pain by encouraging gentle massaging, providing comfortable furniture with optimal support, use cushions and help them reposition regularly.

Coldness and swelling – massaging and gentle exercise can help to promote blood circulation to alleviate swelling and keep your loved one warm. Keep their legs elevated and provide cushion support. Additionally, good woollen clothing, elastic stockings and slippers will help with these symptoms.

Moving and Lifting

People with MND may be prone to falls and may need help moving around. It’s important to take care when lifting someone with MND as it may cause discomfort for both you and your loved one. Reach out to their occupational therapist or physiotherapist about lifting techniques or aids for lifting. 

Living arrangements

As we mentioned above, you can only care for your loved one for as long as you can maintain a level of positive health for yourself. 

If your loved one’s disease progresses to the point where they are no longer independent enough to participate in their own care, or you are reaching a level of burnout non conducive to continue the level of support that they require, you can work with their healthcare team to decide whether you need more help at home or whether your loved one requires professional, full-time support offered at a skilled healthcare facility.

Thankfully there are a number of different types of care facilities available and you can consider the different levels of support and independence that each one provides before you decide which one is right for you both. 

Feel free to reach out to our professional team at Maple Community Services today to find out more about our Supported Independent Living options in your area.