World Motor Neuron Day

June 21, 2017

On 21 June, World Motor Neuron Day brings together communities from across the globe to raise awareness about this neurodegenerative group of illnesses commonly known as Motor Neuron Disease (MND).

As with any debilitating illness, MND affects more than just the individual. Families, friends and the community at large all have a part to play in offering support and deepening their understanding of this disease. Join Selfmed as we explore the causes, symptoms and risks that contribute to MND.

What causes Motor Neuron Disease?

MND is a rare condition that wreaks havoc on the body’s motor nerves, from the brain and spinal cord, through to the processing of messages as received by the muscles. Eventually these messages fail to reach the body’s muscles due to nerve damage, resulting in degeneration and weakening in the body.

In a normal, healthy individual, motor neurons work to control important muscle activity such as gripping, swallowing, speaking and even breathing. When these functions fail, as they often do in MND patients, sufferers are left to deal with the harrowing effects of immobility that often leads to death.

Life expectancy is radically decreased upon diagnosis and many sufferers will experience a range of deteriorating symptoms such as slurred speech and visible muscular wasting. On average, the life expectancy is usually around 3 years after the first symptoms have been experienced, and very few live beyond 10 years.

Variations of MND

Dating back to 1874 when it was first identified, specialists quickly realised that MND had more varieties than originally suspected. Not limited to just one illness-causing disease, MND actually presents in four variations.

Amyotrophic Lateral Sclerosis (ALS) is the most common form of MND. You may recall individuals participating in the Ice Bucket challenge a few years back as an effort to raise money and awareness for ALS. This form of MND affects both the upper and lower motor neuron involvement in the body. This means that processing messages within the body are affected from start (at the brain) to finish (at the muscles). The results are weak and wasting muscles and limbs which may very well lead to paralysis.

Another form of MND includes Progressive Bulbar Palsy (PBP) with signs of slurred speech or difficulty swallowing. Progressive Muscular Atrophy (PMA) and Primary Lateral Sclerosis (PLS) are the two less common types, affecting only a fraction of the population. Early signs in both types include weakness and clumsiness in hands and feet.

Symptoms and Diagnosis

Each case of MND is unique and symptoms may vary over the course of the illness, and from person to person. As it is a very progressive and degenerative illness, sufferers may notice different or worsening symptoms at various stages of the illness.

Early symptoms may be mild and could include muscle twitching, stumbling, muscular cramps or difficulty holding objects. If you experience any of the above, it is advised to undergo a full assessment with your doctor who will be able to rule out any underlying conditions.

As degeneration occurs, symptoms may become more severe and may result in increased difficulty in performing necessary functions to live optimally, such as breathing and eating. Muscle exhaustion, pain, fatigue and discomfort are also common.

Although MND affects the functioning of the physical body, the mind of the sufferer may be perfectly intact. Symptoms rarely involve cognitive functioning and sufferers may maintain full control of their mental ability and reasoning.

MND is hard to diagnose but if suspected, your doctor may recommend that you see a neurologist and undergo blood tests to detect any muscular breakdown. There are various other procedures available to help doctors assess your condition and determine the presence of MND through recording muscular activity and degeneration.

Who is at risk?

In most cases, MND is not genetic and will not be passed down through your family’s bloodline. Very rarely is a young person diagnosed with MND as the disease seems to occur in advanced adulthood with the majority of sufferers aged above 60.

There is no known cause or cure for MND and no evidence exists to suggest that any specific behaviour or lifestyle choices could result in a diagnosis.

How can you support someone with MND?

As with any life-threatening diagnosis, it is important to offer emotional and physical support to anyone suffering from MND. If you are the primary caregiver, it is important to keep documents of every change in the patient. This will help doctors assess the illness and provide relevant treatment.

As there is no known cure, the best means of support is to ensure that the sufferer receives the best possible treatment to alleviate the symptoms and maintain quality of life.

Be present, be informed and create awareness to help improve the lives of those living with MND.