Motor neurone disease is a rare medical condition, which progressively damages parts of your nervous system. According to the NHS, motor neurone disease affects two in every 100,000 people in the UK each year, with 5000 people living with condition at any one time.
Although people of all ages can be affected, it is most common in people aged over 40. Most people with the condition first develop their symptoms when they are in their 60s.
You may have seen our in-depth guide to the medical conditions which affect older people. Today’s article focuses on motor neurone disease, as we look at the symptoms, treatments and possible causes of the condition.
What is Motor Neurone Disease?
Motor neurone disease actually describes a group of diseases with affect the motor neurones (nerves) in the brain and spinal that tell your muscles what to do. The condition is sometimes called amyotrophic lateral sclerosis. The Motor Neurone Disease Association explain:
MND and ALS are different descriptions of the same disease. In the UK we use the term motor neurone disease (MND) and in the USA they use amyotrophic lateral sclerosis (ALS). There are several forms of MND. ALS is the most common type. MND is an umbrella term for all forms of the disease. In the USA, ALS is used as the umbrella term.”
Motor neurone disease occurs when specialist nerve cells in the brain and spinal cord stop working as they should. This is medically known as neurodegeneration. These motor neurones control important muscle activity in your body, including:
Interesting statistics and facts, provided by The Motor Neurone Disease Association include:
- Six people are diagnosed each day.
- Six people die each and every day.
- A person’s lifetime risk of developing motor neurone disease is up to one in 300 – That’s one person in an average size cinema screening.
- The condition does not usually affect your senses, such as sight, sound and feeling.
Average life expectancy of those affected by this condition ranges from two to five years from the onset of their symptoms. 10% of those diagnosed will live for longer than five years.
All of the symptoms of motor neurone disease are linked to movement, and often affect one side of the body initially. They include:
- Difficulty swallowing (and sometimes excessive drooling).
- A weakened grip, usually first noticed in one hand.
- Small twitches and flickers of movement, known as ‘fasciculations’.
- Difficulty speaking or slurred speech, known as ‘dysarthria’.
- Cramps and muscle spasms.
- Dragging of the leg, again usually first noticed on one side.
Because it is a progressive condition, the symptoms of MND tend to manifest only slightly at first, but then get steadily worse over the following weeks and months. The condition affects everybody in a different ways, and not everybody will have all of the symptoms or have them in the same order.
Aside from checking for these symptoms, doctors have a number of tests they can use to help diagnose the condition. Electromyography (EMG) involves testing the muscles for nerve activity, while a transcranial magnetic stimulation (TMS) examination uses a magnetic coil to measure motor neurone activity in the brain. Abnormalities in these tests can be used to identify the condition.
Other tests include:
- Blood tests – Used to check that certain organs are working as they should and to look for a marker of muscle weakness.
- MRI Scan – Used to five a detailed image of the inside of your brain and spinal cord.
- Nerve conduction test – Measures how quickly your nerves can conduct an electrical signal.
- Lumbar puncture – Used to take a sample of spinal fluid for testing.
- Muscle biopsy – In rare cases, a small sample of muscle is removed for testing to help determine where the problem lies – in the muscles or nerves.
Once the condition has been diagnosed a person’s life expectancy is commonly only around three years, although some sufferers can live for up to a decade.
Currently there is no cure for motor neurone disease and the treatment available only aims to make the life of the sufferer more comfortable, and to help them compensate for their loss of bodily function.
Once who have been diagnosed with the condition, you will be introduced to a healthcare team (multidisciplinary team) who will be involved throughout your care. This team will commonly include a neurologist and a specialist nurse.
Due to the nature of the condition, most people affected are advised to draw-up an ‘advance decision‘ once they are diagnosed. This allows you to make your treatment preferences known in advance, in case you are unable to communicate in the future. Items covered include:
- Where you would like to be treated; at home, in a hospice or in a hospital as you enter the final stages of the condition.
- The type of medication you’re willing to take in certain circumstances.
- Whether you would consider a feeding tube if you’re unable to swallow food and liquid in the future.
- If you have respiratory failure (loss of lung function) in the latter stages of motor neurone disease, whether you wish to be resuscitated by artificial means, such as having a permanent breathing tube inserted into your throat.
- Whether you want to donate your organs after you die.
There is only one drug specifically made for motor neurone disease. This is call Riluzole, which slightly slows the progression of the disease, and can extend the life expectancy by up to six months. It works by slowing down the progressive damage to your neurone cells by reducing their sensitivity to the nerve transmitter glutamate.
Side affects of this drug includes mild cases of nausea, tiredness and, on rare occasions, a rapid heartbeat.
The remaining treatments are used to deal with symptoms of the disease. In order to help you with your muscle cramps, you can have physiotherapy or take a medication named quinine. Mobility can become a huge struggle as the condition progresses, so having physio can help to ease the pain.
The breathing and swallowing difficulties that go alongside the loss of your motor function can be eased with oxygen therapy and the use of a feeding tube (known as a PEG). Other symptoms have the following form of treatments:
- Muscle stiffness – Medication known as baclofen is sued to help relax your muscles.
- Drooling – The main form of medication used is a hyoscine hydrobromide skin patch, which was originally used to treat motion sickness.
- Communication – Affected people who have speech problems can see speech and language therapists in order to learn special speaking techniques. A range of communication aids are also available as your condition progresses.
- Pain relief – For those who experience pain, ibuprofen is often prescribed to help control it. Severe pain can be treated by opiate-based painkillers such as morphine.
In order to help those affected to be as comfortable and stress-free as possible, complementary therapies such as acupuncture are often suggested. Before considering complementary therapy, you should seek advice from your treatment team.
Living with Motor Neurone Disease
Once you have been diagnosed with motor neurone disease communication is key. Although it will be difficult, open discussions are the best way of allowing everybody to adjust to your news. The support of your family and friends will be very important as your condition progresses.
Keeping your friends updated with your news can also help with isolation problems. If you’re friends know and understand your condition, they will be able to accommodate for your needs and ability. Some of the treatments mentioned above will help your communication skills, so you can take part in conversations for longer.
When you feel ready, it can also help to let everyone at work know about your diagnosis, as the symptoms will become noticeable. Your company may be able to adjust and adapt your workplace in order for you to still work.
Roles and routines within your family life may change, as your children or partner become your carer at home. It’s important to always have help and guidance from health officials in order to reduce stress and strains on your relationships.
The Motor Neurone Disease Association are on-hand to help those affected by the condition.
If you have motor neurone disease then you qualify for VAT Exemption when you order a personal alarm system from Lifeline24. HMRC state that a product which has been “designed or adapted for a disability” qualifies for VAT exemption.
For a person to qualify they must meet certain criteria set by HMRC. These criteria state that the customer must have a long-term illness, a terminal illness or a disability in order to qualify.
Staying safe at home
A personal alarm can help protect people if they suffer from medical conditions such as motor neurone disease. If one of our alarm users feels unwell, or suffers a fall, he or she can press their pendant button and help will be arranged immediately.
For more information on purchasing one of our life-saving personal alarms, please speak to one of our friendly advisors on 0800 999 0400. Alternatively, complete our contact us form and we will get back to you as soon as possible.