What is Motor Neuron Disease?
Today we woke up to the sad new about Professor Stephen Hawking's death, which shocked and saddened many. Professor Hawking was known as one of the most famous scientists of modern times, with books such as A Brief History of Time, and the black hole theory now known as Hawking radiation, to be left as his legacy.
He did not, however, only shock the world with his scientific thinking, but also with his defying of medical predictions. He was given an expected two year to live diagnosis due to motor neuron disease in 1963, but two years turned into 55 years. Professor Hawking's long live baffled many, as statistics show that the average life expectancy for somebody diagnosed with Motor Neuron Disease is five years.
So what is Motor Neuron Disease?
- It is a rare progressive condition that affects the nerves and the cells in the brain an spinal cord - they control the muscles in the body. This causes weakness and wasting of the muscles
- The motor system in our body controls all the movement, and motor neutrons are a key part of the motor system, as they send messages through our nervous system, telling our muscles to move.
- It is always fatal disease - most people die within five years of onset of symptoms
- People are most likely to develop the condition between the age of 75 and 79, but it can happen at any age
What are the possible symptoms of Motor Neuron Disease?
- Muscle weakness is one of the first signs, so one may experience difficulty with every day tasks like opening bottles bottles, carrying objects, walking up stairs. This may be put down to being clumsy or stressed to start with, and diagnosis of MND may take a bit longer.
- Muscle loss with experiences of twinges, pins and needles
- Loss of mobility in the limbs, or stiffness in their arms or hands
- Developing 'foot drop' where one foot drags and gets in the way of walking
- Experiencing fasciculations - rapid muscle contractions, rippling effects under the skin
- Difficulty with speech, or experiencing slurred speech - people may appear drunk or as if they've had a stroke
- Difficulty with swallowing and breathing
Are there different types of Motor Neuron Disease?
There are four different types of Motor Neuron Disease, each can progress differently:
- Amyotrophic lateral sclerosis (ALS): the most common, with people experiencing muscle wasting, weakness, fasciculations, speech problems, swallowing difficulties, and muscle spasms. This is the type that Professor Hawking lived with.
- Progressive muscular atrophy (PMA): slower progression and less common type, not normally experiencing muscle spasms.
- Progressive bulbar palsy (PBP): this type normally affects mostly muscles in the throat, tongue and face, causing difficulties with speech and coughing. It can also affect people's emotions, making them laugh or cry for no reason.
- Primary lateral sclerosis (PLS): a very rare type, with experiences of spasms but not muscle wasting or fasciculations.
What can Kemble at Home do to assist with Motor Neuron Disease?
Kemble at Home can assist with various aspects of living with MND like:
- Administering medication: Due to the Motor Neuron Disease being degenerative, medication intake may become problematic after a while. Kemble carers are trained to administer medication safely and securely, and to keep a record of the medications that are being taken.
- We can work along other professionals like speech therapists, occupational therapists, physiotherapists and dieticians who will be helping you cope with Motor Neuron Disease. Our carers can help you practice your physiotherapy exercises, assist with preparing healthy meals prescribed by dieticians and also shop for required ingredients, and they can also monitor how the condition is progressing, keeping in constant communication with the OTs in order to make sure you have the right equipment in your home.
- If eating and drinking is problematic, you may need to be fed through a tube in your nose or by PEG (percutaneous endoscopic gastronomy), where a tube is inserted directly into the stomach. Our carers receive in-depth PEG training enabling them to assist appropriately in these cases.
- End of life and palliative care: We specialise in end-of-life and palliative care, making sure the person is comfortable and has everything they need in terms of support in this difficult time. Our carers receive training and emotional support in these situations, being able to provide not only care for the service user, but also support for the family.
For more information on our end-of-life and palliative support, click here.
- Live-in care or visiting home support: Some people may be happy with carers popping in several times a week through visiting care, while other may want full time support with a carer living in their home. Both options are available with Kemble. Find our more here.