Motor neurone disease care

Motor neurone disease usually affects people over the age of forty. Diagnosis is more common in women than men, and around seven in every 100,000 people in the UK have MND. Approximately 5% of people with the disease have a family history, but for the majority diagnosed with MND, the reason is unknown.

The disease gradually destroys the nerve cells it attacks, meaning symptoms will worsen over time. The exact impact of MND on a loved one’s life will depend upon the type of disease they have. Home care can help those affected to adapt, as their symptoms change and develop.

Motor neurone disease (MND) can be a daunting diagnosis, with symptoms that make day-to-day living a challenge. Care is available to help your loved one manage their symptoms, ensuring they can live life as independently as possible in their own homes.

While a small proportion of cases may be hereditary, identifying the exact cause is not always possible, and more research is needed to assess the risk factors.

What is motor neurone disease?

Motor neurone disease affects the nerves responsible for everyday functioning such as swallowing, breathing, and walking. There’s no cure available at the moment but being informed can help a loved one to better understand and manage their condition.

The right treatment and care can help to slow the progress of the disease and improve their quality of life. Additionally, with support from a live-in carer, your loved one can receive personalised practical and emotional comfort.

It’s thought that approximately 10% of motor neurone diseases have genetic components and are hereditary. The remaining 90% are considered random, with no clear explanation.

It, therefore, appears that in some forms of MND genetics play a role, but not always and a combination of other influences and risk factors likely lead to the expression and experience of MND in later life.

What are the symptoms of motor neurone disease?

Symptoms often progress slowly, affecting specific areas such as the arms and legs, respiratory system, or the mouth.

Symptoms then may include:

• Slurred speech
• Fatigue
• Muscle pain and weakness
• Cramps
• Difficulty with swallowing
• Clumsiness
• Weight loss and muscle loss
• Shortness of breath.

As the condition advances, symptoms may progress to the point of:

• More severe difficulty breathing
• Joint pain
• Muscle loss
• Drooling from problematic swallowing
• Personality changes.

Many with ALS may find language and memory are affected, and some may develop dementia. Home care is targeted to support and assist with everyday living where these symptoms become problematic, so those with MND needn’t feel alone in managing the condition.

If a loved one shows a number of these symptoms, they should see their GP as soon as possible. They’ll be referred to a neurologist if there is a suspicion that the cause of the symptoms is motor neurone disease.

There are no specific tests for MND. However, a GP may use the following measures to rule out other causes and confirm their diagnosis:

• Blood tests
• MRI Scan of brain and spine
• A lumbar puncture that collects fluid from the spine with a thin needle, also known as a spinal tap
• An electromyogram (EMG) or nerve conduction tests to establish the level of electrical activity in the muscles

What are the common forms of motor neurone disease?

The most common type of MND is amyotrophic lateral sclerosis (ALS), the same condition Stephen Hawking lived with for decades. It affects the muscles in the face, arms and legs, causing stiffness, weakness and muscular deterioration.

Other forms include progressive muscular atrophy (PMA), primary lateral sclerosis, spinal muscular atrophy (SMA) and progressive bulbar palsy (PBP).

Progressive bulbar palsy affects the muscles used for chewing and swallowing, affecting one in five people with MND.

Frontotemporal dementia with motor neurone disease (FTD-MND) is a rare form of MND that causes personality changes and memory difficulties and may require specialised dementia care.

Progressive muscular atrophy is less common, with symptoms first appearing in the hands and feet.

Primary lateral sclerosis is another rare type of MND with symptoms appearing in the legs before affecting other parts of the body.

Motor neurone disease can affect children and adults, although it typically affects those in their 60s and 70s. Many of those seeking private care for their loved ones will be looking for dementia care and support with MND.

It is important to appreciate how vital compassionate elderly caregivers are in making a positive difference to lives. Those with MND shouldn’t feel they have to give up their homes to get the support needed. Your loved one can maximise their independence, their freedom of choice and stay in the comfort of their own home with professional, trusted live-in carers.

There’s no cure, but there are ways to manage and hopefully slow the progression of MND. Practical personal support, assistive therapy and devices for independent living, possibly physical therapy, speech therapy, and in some cases medication, can all form part of a management plan.

How to care for motor neurone disease

There’s no cure for motor neurone disease, but a team of medical specialists can help to manage the effects of MND on your loved one’s life:

• A physiotherapist will help with physical and mobility problems, so that movement and breathing is easier
• An occupational therapist can help with managing everyday tasks using adapted equipment for greater independence
• A dietician will advise on eating, healthy diet, hydration and maintaining a healthy weight
• A speech and language therapist can help with slurred speech and problems with swallowing

Treatment options include medicines to manage symptoms, tube feeding, breathing and ventilation support and complementary therapies. There are also treatments currently in development that could prove effective in the future.

Researchers are currently developing new treatments for MND that may prove effective in the future. These include: