Guide by Condition: Motor Neurone Disease

Posted by Mike Phipps on December 10, 2018

Understanding and living with Motor Neurone Disease (MND)

Motor neurone disease describes a group of diseases that affect the nerves in the brain and spinal cord which tell your muscles what to do. Although there is currently no cure, the right treatment, adaptations and mobility aids can help reduce the impact that the symptoms have.

What is Motor Neurone Disease (MND)?

It is an uncommon condition that mostly affects people in their 60s and 70s, but it can affect people of all ages. There is no known cause behind why the motor neurons in the brain gradually stop working.

MND can affect how you talk, walk, breathe, eat and drink with some people also experiencing changes in their thinking and behaviour. However, it does affect everyone differently and not everyone will experience all the symptoms and they can progress at varying speeds, making the course of the disease difficult to predict.

 Types of MND include -

• Amyotrophic lateral sclerosis (ALS) -  you may recognise this from the viral ‘Ice Bucket Challenge’ that swept the internet in summer 2014 which raised a lot of money towards research for ALS. It is the most common form of MND which includes weakness and wasting of the limbs, cramps and muscle stiffness.
• Bulbar onset MND or Progressive bulbar palsy (PBP) - Mostly affecting the muscles of the face, tongue and throat, it affects a smaller number of people.
• Progressive muscular atrophy (PMA) - a type of MND which affects only a small portion of people with early symptoms showing weakness or clumsiness of the hands.
• Primary lateral sclerosis (PLS) - A rare, slow-progressing form of MND that causes weakness mostly in the lower limbs, but people can also experience speech problems and clumsiness in the hands.
• Kennedy’s Disease - Although not a type of MND, it has similar symptoms and is a rare condition that affects the motor neurons along with increasing weakness and wasting of muscles. Kennedy’s also causes hormonal changes. Due to similarities Kennedy’s and MND are sometimes confused at diagnosis.

Treatment and therapy for MND

While there is currently no cure for MND, treatments can help reduce the impact that the symptoms have. A person who is diagnosed will be cared for by a GP and a group of specialists. Treatments can vary from person to person depending what is required but may include physiotherapy and exercises, advice from a speech therapist or dietitian, specialist clinics that usually involve an OT or nurse to help make daily tasks easier. Medicines may be prescribed which can help to reduce muscle stiffness as well as a medicine called riluzole which can help slow down the progression of the disease. Wheelchairs can be an ideal way to get around if mobility becomes an issue as they are designed to meet the needs of the user with different sizes and styles available.