MND - Motor Neurone Disease

Introduction

Motor neurone disease is an uncommon condition that mainly affects people in their 60s and 70s. It occurs when motor neurone cells (in the brain, spinal cord or nerves) which control movement, gradually stop working. Over time this results in progressive weakness.

Although some people live for many years after diagnosis, MND is likely to shorten life expectancy and, unfortunately, eventually leads to death. MND cannot be cured, but the right help and treatment can reduce the impact on a person's quality of life.

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At Fortuna we have experience with many conditions and can advise on equipment

Causes

The cause of MND is unknown, and it is likely that there are multiple factors involved, but in most cases no specific cause can be identified. Some risk factors are:
~ Age: it is more common over the age of 50, although it can affect adults of all ages
~ Gender: it is more common in men than in women
~ Family history: having a close relative with MND may increase the risk of developing the disease, but it rarely runs in families
~ Occupation: some studies have suggested that certain occupations, such as farming and mechanical work, may increase the risk of MND
~ Some medical conditions: a few people with MND have underlying medical conditions, such as frontotemporal dementia or multiple sclerosis

Rollators can help maintain mobility
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Specialist seating may improve quality of life
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Types of MND

There are several different types of Motor Neurone Disease (MND), each with its own characteristics. The most common are:
a) Amyotrophic lateral sclerosis (ALS) which is characterized by weakness and wasting (loss of muscle bulk) in the muscles
b) Progressive bulbar palsy (PBP) - this affects the muscles in the mouth and throat, leading to difficulties with speech, swallowing, and breathing
c) Primary lateral sclerosis (PLS) is rare and will usually cause weakness and stiffness (spasticity)
d) Progressive muscular atrophy (PMA) is rare and  affects the motor neurons in the nerves, tending to cause weakness and wasting

Symptoms

Symptoms of motor neurone disease start gradually and may initially be dismissed as unimportant. Symptoms vary with the individual and the specific type of MND.  Early symptoms can include:

~ leg weakness causing problems with mobility
~ weak grip and loss of hand control
~ slurred speech and difficulty swallowing
~ loss of coordination and balance
~ muscle cramps and twitches (fasciculation)
~ muscle wasting (loss of bulk) in the arms or legs
~ weight loss
~ crying or laughing in inappropriate situations

 As MND gets gradually worse, mobility, swallowing and breathing get increasingly difficult, and may necessitate the use of a feeding tube to help with feeding or a face mask for support with breathing.

Investigations

Diagnosis may be difficult, as there is no single test for MND and other conditions can cause similar symptoms.

Therefore, diagnosis is typically based on a combination of test results and a thorough evaluation of the patient's symptoms, together with a physical examination to identify muscle weakness, atrophy, and reflex changes.

 The following tests may be done to rule out other conditions:

~ Blood tests
~ CT and or MRI scans of the brain and spine
~ NCS / EMG tests to measure the electrical activity in muscles and nerves
~ LP (lumbar puncture)  – to obtain the cerebrospinal fluid for analysis

Management of MND

Prevention
There is no known way to prevent MND, however it will be beneficial to take measures to maintain good general heath, such as a balanced diet, regular exercise and treatment of other medical conditions. Smoking has been linked to an increased risk of MND and quitting is therefore advised. If there is a risk of head injury, for instance with some sports, wearing a helmet may reduce risk.

Treatment to Control Symptoms
There's no cure for motor neurone disease and treatment is focused on managing symptoms and maximizing quality of life. Care will be undertaken by GPs, and a specialist team including nurses, physiotherapists, OTs and hospital-based doctors. Treatments include:
a)   physiotherapy and exercises to maintain strength and reduce stiffness
b)   advice from a speech and language therapist can help with communication and improve swallowing
c)   advice from a dietitian, since MND can impair the ability to swallow causing nutritional problems
d)   occupational therapy can help people cope with physical limitations by adopting new ways of performing everyday tasks
e)   respiratory support may be needed to help patients with their breathing
f)   a medicine called riluzole that can slightly slow down the progression of the condition
g)   medicines to relieve muscle stiffness and spasms
h)   medicines to help control saliva and mucus production, and reduce the risk of chest infections
i)   emotional support for both the patient and their carer

Our staff advise on the best options

Management of exacerbations
During an exacerbation of MND, the symptoms of the disease may worsen temporarily, due to a number of possible factors, such as infections, physical strain, or emotional stress. Exacerbations will be managed by a more intensive combination of medical treatment, rehabilitation and supportive care.

Rehabilitation
Rehabilitation, provided by physiotherapists OTs and speech therapists can help to maintain muscle strength and mobility for as long as possible, and improve quality of life for people with MND.

Rehabilitation may also involve the use of adaptive equipment, such as wheelchairs, to help maintain independence and mobility. Speech-generating devices or tablets with text-to-speech software, can help the patient with communication.

A rehabilitation plan should be tailored to the individual's specific needs and may need to be adjusted as the disease progresses.

Maintaining social links and planning for the future
MND can be a very isolating and lonely experience, so it's important to connect with other people. There are many support groups and online communities for people with MND and their families, and these can be great places to find emotional support and practical advice.

 MND can be a very challenging and uncertain journey, but it's important to try to stay positive and find ways to enjoy life. This might involve setting small goals and finding activities that bring you joy, such as spending time with loved ones, travelling, or pursuing hobbies.

Although it may be difficult, if possible you should plan ahead.  MND is a progressive disease, which means that it will get worse over time. It can be helpful to think about your goals and priorities, and to start planning for the future in terms of your care, finances, and legal affairs.

FAQs

   Useful Links:

• NHS Information on MND
• Motor Neurone Disease Association
  The MNDA's excellent website provides a wealth of useful information
  
  
• Contact us:
  info@fortunabambach.com
  020 8805 2020

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