Motor neurone disease (MND) refers to a group of irreversible, progressive neurodegenerative disorders that destroy permanently the motor neurons in the body. These are the cells in the brain and the spinal cord that carry electrical signals to your muscles telling them to move during activities such as speaking, walking, running, breathing, swallowing, etc. As a result, the patient is unable to cope with even the basic daily life activities on his own.
Motor neurone disease is a very serious disorder usually affecting people aged 50 and above. As of now, there is no effective treatment available for motor neurone disease. So, coping with motor neurone disease as it progresses requires the patients to be housed in special professionally managed care homes where medical and emotional for motor neurone disease support is available around the clock. MND patients normally don't live for more than 2 to 5 years once the diagnosis is confirmed.
Types of motor neurone disease
1. Amyotrophic lateral sclerosis (ALS): most commonly occurring, impairs the upper and lower motor neurones function in limbs 2. Progressive bulbar palsy (PBP): presents initially with speech and swallowing difficulties, and progresses to limbs and cognitive function impairment 3. Progressive muscular atrophy (PMA): less common, only upper motor neurones function impaired 4. Primary lateral sclerosis (PLS): quite rare, only lower motor neurones function impaired and affects only the voluntary muscles 5. Pseudo bulbar palsy (PP): affects primarily the motor neurones in the lower cranial nerves 9 to12, which control the muscles involved in eating, swallowing and speech
Causes of motor neurone disease
The reasons why motor neurones in some people start degenerating have not been clearly understood by the medical community. It is speculated that a number of factors might be involved in the development of motor neurone disease. For example:
- High levels of the neurotransmitter glutamate - Poor cell metabolism, resulting in poor nerve function - Deficient antioxidants production - Mitochondrial abnormalities - Lack of neurotrophic factors, which are proteins that facilitate the growth and repair of nerve cells - Genetic factors
Symptoms of motor neurone disease
Initially, motor neurone disease presents with the following symptoms:
- weakness of the limb muscles, as reflected, e.g., in weakening of the grip - difficulty in swallowing - unclear and inarticulate speech - twitching of muscles - muscle pains - muscle cramps - fatigue
As the disease progresses, limb muscles begin to shrink and the limbs become very weak, making movement difficult. Muscle spasms, twitches, and muscle/joint pains become worse; some limb muscles may even become spastic (abnormally stiff). Increasing swallowing difficulties make it hard to eat and drink. Verbal communication becomes harder and breathing becomes more and more difficult. Other symptoms that may show in secondary stages of motor neurone disease are: excessive yawning, drooling, jaw pain, emotional disorders like depression, changes in memory and cognitive functions, etc.
In the end stage of motor neurone disease, the patient becomes completely paralyzed. The lung muscles become so weak that breathing even with oxygen mask becomes strenuous, and eventually the patient falls into deep sleep and dies.
Coping with motor neurone disease
Till date there is no effective cure for motor neurone disease. The only drug available, riluzole - a glutamate blocker, can at the most extend a patient's lifespan by a few months. Detoxification and rejuvenation therapies available in alternative medicine, such as Panchakarma in Ayurveda, can also come to rescue to some extent. The only hope for possible successful cure of motor neurone disease in future lies in stem cell therapy.
The focus of the medical support, therefore, is to reduce the severity of the symptoms and improve the quality of life of the patient. This is possible only in professionally managed care homes where special needs of an MND patient are addressed by a team of healthcare professionals comprising neurologists, physiotherapists, speech therapists, psychologists, palliative care specialists, and many more. Barchester care homes in UK provide a one-stop solution for management of patients suffering from motor neurone disease or other such life-crippling conditions.
Caring For Someone Who Has Motor Neurone Disease
Motor Neurone disease impacts the lower and upper motor neurons, killing them gradually and causing a total lack of mobility. It can be heart wrenching to see a loved one suffer from such disorders. Not only is it difficult to take care of the patient but also the fact that people who suffer from MNDs rarely survive for more than 5 years makes it emotionally taxing for friends and family.
Motor Neurone diseases cause the gradual loss of muscular movement and patients will often need an increasing amount of help with the most basic of tasks including personal care. While the physical ramifications of the disorder have to be dealt with, family members and care workers cannot ignore the emotional aspects of the illness either. Patients will often need support to cope with an increasingly debilitating condition including psychological interventions.
Here is a look at how you can take care of a loved one who suffers from Motor Neurone disease and help to maximize the quality of the patient's life:
Motor Neurone disease care: People who suffer from MND will at some point battle depression and anxiety; the emotions are understandable given the patient's condition. There are support groups and therapist who can help people suffering from MND to the share their feelings and fears. The patient should also be encouraged to discuss matters with his/her doctor. Teach the patient breathing exercises that will help to control anxiety. Heightened emotional responses such as crying or laughing are normal and known as emotional liability.
Support with basic tasks: A patient suffering from Motor Neurone disease will gradually need help using the toilet which can be distressing for him as well as the caretaker. Privacy, safety and independence are crucial factors in the conundrum; aids do exist which can help to enhance mobility and the patient's sense of independence. These include: grab rails, commodes with foot operated spray washers, simple toilet paper dispensers, warm air dryers and more.
Help with Bathing: Warm baths will help to soothe the muscles, alleviating discomfort. However, depending on the progression of the disease, it can be difficult to get the patient into the shower. Aids such as bath boards, non slip mats, soap on a rope, long handled sponges and grab rails etc can prove to be of immense help. Mechanical devices such as seats and hoists are also available for patients who have completely lost mobility in the upper and lower body.
Help is available for patients as well as their care workers from the doctor responsible for patient treatment, the local community health centre and specialists such as physiotherapists, psychologists, speech therapists, occupational therapists etc.
Sufferers who look for Motor Neurone disease care, you will need to remember that as the ailment progresses; the patient will need assistance with personal care along with psychological support. The right aids and equipment can help to significantly improve the quality of a patient's life and his sense of independence. If you are unsure about the equipments that the patient needs, there are professionals who will be able to identify the aids, support and resources required.