Motor Neurone Disease (MND) is a rare disease affecting two in every 100,000 people in the UK each year. At any one time there are around 5,000 people living with the disease.
While rare, more and more people are becoming aware of the disease. Most recently terminally-ill Noel Conway, who suffers from the disease, lost his High Court challenge against the law on assisted dying.
The disease was temporarily brought into the spotlight in summer 2013 with the Ice Bucket Challenge, a global viral social media campaign where people nominated others to pour ice cold buckets of water over their heads to raise awareness and funds for MND.
What is MND?
MND is a fatal, rapidly progressive disease that affects the brain and spinal cord. It affects the nerves that control the body’s movement, it can affect arms and legs, speech and swallowing, or ability to breathe.
Belinda Cupid, head of research at UK-based Motor Neurone Disease Association (MND Association), told HuffPost UK: “Normally, the trigger for movement begins in the brain’s motor cortex. This transmits signals down the spine to the relevant area - whether to the nerves in the hands or the feet. The nerves carrying these messages are motor neurones and with MND these systems and nerve pathways become damaged.”
“Think of motor neurones like domestic wiring,” she added. “Developing MND is like pulling the plug out of the wall - once the connection is lost, you can’t control the muscle anymore.”
According to the MND association, the disease can affect adults of any age, but usually when they are 50 years old or more. It is more common in men than women, but this evens out with age.
As mentioned, symptoms can manifest in a number of ways. Some will experience slurred speech while others will find they start to drag their feet.
Common symptoms and effects of MND include:
- Pain and discomfort
- Muscle cramps and spasms
- Stiff joints
- Bowel problems
- Speech and communication issues
- Eating and drinking difficulties
- Saliva and mucous
- Coughing and a feeling of choking
- Cognitive changes
According to the NHS, in most cases the condition isn’t painful.
Life expectancy for about half of those with the condition is three years from the start of symptoms, according to the NHS. However, some people may live for up to 10 years, and in rarer circumstances even longer.
There is currently no cure for MND, although you can have treatment to improve quality of life and help ease the progressive loss of bodily functions.
The condition kills five people every day in the UK, half within 14 months of diagnosis, and can affect up to 5,000 adults at any one time.
Cupid added: “Aside from there being no cure, there is also no diagnostic test for MND. This means that people may wait months to find out what is wrong with them. Due to the very rapid nature of MND this means it is vital that patients need care in a range of areas - they will need to see speech therapists, physiotherapists, respiratory experts. At the moment patients are expected to travel from clinic to clinic - and their lives get overrun by MND.
“We need more co-ordinated care in multi-discplinary clinics. Studies have shown that this improves quality of life and life expectancy.”
For more detail visit the MND Association website.