Difficulty with eating and drinking limits the ability of the body to receive the nutrition required to maintain a healthy weight. Studies have found that some people with MND might also lose their appetite, resulting in weight loss.
If MND affects swallowing, eating and drinking, mealtimes can take longer and you may eat less. As a result, you could lose weight, which also happens if your muscles shrink with reduced movement. Weight loss can impact on your wellbeing.
This handout includes information for people with Motor Neurone Disease (MND) who are finding it hard to eat and drink. MND causes muscles to weaken, including the muscles used for chewing, swallowing and breathing. This could make it more difficult to eat and drink, which you may notice as your disease worsens.
In fact, malnutrition is one of the most common symptoms and occurs in up to 50% of ALS patients [2]. Our finding of frequent loss of appetite in ALS appears to be in line with the previously reported malnutrition studies in ALS.
A person with MND will usually die between two to three years after diagnosis, but this can vary from person to person. Some people live many years after their diagnosis.
The usual cause of death is respiratory failure, often associated with infection. There are now two drugs licensed for MND – riluzole, which has been shown to slow the progression in some patients,3 and edaravone, which has been shown to help certain patient groups and is licensed in the United States.
People living with ALS may find it difficult to properly swallow foods that are a mix of solids and liquids, such as crunchy cereal with milk, or soup with chunks of meat or vegetables. Instead, substitute foods with a single consistency, like oatmeal or thick cream soups.
These weak muscles may make it difficult for people with ALS to eat enough to meet their nutritional needs. Swallowing may become difficult. They may have trouble preparing meals, feeding themselves, and experience fatigue, constipation, or a decreased appetite.
ALS patients typically lose a significant amount of weight, both because their muscles atrophy from disuse and because they are physically unable to consume enough calories to maintain weight. Recent studies suggest that reduced appetite and an elevated metabolic level may also contribute to weight loss.
As MND progresses, the muscles that help you breathe will become weaker. Your breathing will become increasingly shallow, with a weaker cough.
MND can affect somebody's ability to eat and stay nourished in many ways. People with MND can of course experience physical challenges with difficulty chewing and swallowing, but it is also common to experience issues preparing food, and many people struggle with appetite or mealtimes when they are feeling low.
People who have MND may: develop generalised paralysis (paralysis of both sides of the body) lose speech and have difficulty swallowing. become breathless and experience sleep disturbance.
For many people with MND, as the disease and consequent muscle weakness progresses, they experience problems that disrupt their sleep3, 6. Waking up frequently or having trouble getting to sleep then creates other sorts of strains and pressures, adding to the burden of the disease4.
With MND, your bladder and bowel are not usually affected. However, if your mobility is reduced, it may be more difficult to get to the toilet. Sometimes it's tempting to drink less as a result, but that can leave you dehydrated and lead to constipation.
People with MND who are in pain may also report other symptoms, the most common being: sleep problems such as tiredness, drowsiness and nightmares • constipation, diarrhoea, urinary problems • itching • sweating.
ALS often begins with muscle twitching and weakness in an arm or leg, trouble swallowing or slurred speech. Eventually ALS affects control of the muscles needed to move, speak, eat and breathe.
Among the most distressing and painful symptoms of ALS are digestive issues that accompany the disease's progression. Constipation, abdominal pain, a feeling of fullness, nausea, and difficulty moving the bowels are the most frequently mentioned gastrointestinal symptoms.
Although the course of ALS is unpredictable, fatigue is one outcome that is predictable, resulting from muscle weakness and spasticity. Fatigue can range from mild lassitude to extreme exhaustion. People often complain of tiredness, dwindling strength, and lack of energy.
It's common for people with ALS to have sleep problems such as sleep apnea, sleep-related hypoventilation, and insomnia. The connection between ALS and sleep goes both ways. Lack of sleep can aggravate symptoms of ALS. It can also affect disease progression and survival time.
There's no cure for MND, but there are treatments to help reduce the impact it has on a person's daily life. Some people live with the condition for many years. MND can significantly shorten life expectancy and, unfortunately, eventually leads to death.
It is thought that MND is caused by a mix of genetic and environmental factors, and several possible factors have been suggested, including exposure to chemicals, fractures and injuries, smoking, military service, and engaging in some sports or high levels of exercise, but research studies have so far failed to find ...