Nutrition

“I get tired during meals.”
“I take a very long time to eat.”
“I am losing weight.”
“I cough a lot when I eat.”
“I no longer enjoy eating.”

 

A balanced diet with the right amount of nutrition is an essential part of maintaining good health.

Due to weak muscles, people with neuromuscular disorders may have difficulty achieving good nutrition.

The following section provides suggestions on how to deal with these challenges.

I want to learn about:

General Tips
Swallowing
Excess Saliva
Dry Mouth
Tube Feeding

 

 

General Tips

Consult a registered dietitian. Dietitians assess nutritional status, dietary intake, feeding abilities and provide recommendations, which may include:

  • Modifying the texture and consistency of your food
  • Alternative methods of preparing food
  • Substitutions for hard to manage foods
  • Recipes, meal plans, and other strategies to maximize your nutritional intake

Take your time. Eating and drinking may be a very slow and labour-intensive process. Allow enough time to enjoy meals without rushing.

Take small bites. Smaller and softer pieces of food are easier to chew and manage.

Minimize distractions. To help you focus on the task at hand, consider turning off the television or radio.

Sit in an upright position during mealtimes. Tucking your chin towards your chest may further protect your airway during feeding.

Try to avoid very dry foods that have loose crumbs. Foods like day-old muffins, toast, crackers, chips, pastries, dry fish and dry mashed potatoes may be more difficult to eat. Try adding moisture to dry foods with gravy, sauce, butter or broth.

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Swallowing

Neuromuscular disorders can affect the muscles involved in the swallowing process, such as the lips, jaw, tongue and throat. This weakness may lead to difficulties, such as:

  • Frequent throat clearing or coughing
  • Food leakage from mouth
  • Chewing
  • Moving food around mouth
  • Food or drink escaping from nose
  • Sensation of food caught or stuck in the throat
What can I do?

Get a referral to a speech-language pathologist. Consult a SLP (preferably with specialized knowledge of neuromuscular disorders) for assessment and management of swallowing problems.

Discuss your symptoms with your doctor. An x-ray procedure called a Modified Barium Swallow Video-fluoroscopy can help identify the muscles that are causing swallowing problems.

Avoid mixed consistencies. It may be difficult for the swallowing muscles to switch between eating and drinking, which require slightly different muscle activity. When eating a meal consisting of different textures, like soup containing broth, meat, and vegetables or yogurt containing granola, fruit, and nuts, separating the solids and liquid and eating only one consistency at a time may help.

To help swallowing of medications. Try grinding pills into powder form between two spoons. Or, you can use a pill crusher, which is available from a pharmacy. Mix the powder into a smooth food, like apple sauce or yogurt.

Be aware that some slow-release medications should not be crushed. Talk to your pharmacist to find out if your pill medication is available in liquid form.

Learn what to do in case of an emergency. When the throat is irritated or blocked, it can close around the irritant, which makes breathing difficult. Even your saliva can cause coughing and choking. You and your caregivers can learn appropriate responses by taking a certified First Aid course with special attention to identifying signs of an obstruction (blockage).

What not to do in an emergency

Never use liquid to wash down food. If food is stuck in the throat and liquid is added, the liquid can very easily be channeled into the airway leading to your chest, which can cause choking.

Never hit a choking person on the back. When a person is choking from food, hitting on the back can cause the food to jam tighter in the throat.

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Excess Saliva

Build-up of saliva is a common problem among people with neuromuscular disorders who have weakened tongue and throat muscles and are not able to automatically swallow saliva as it builds in the mouth. Excess saliva, which may be accompanied by thick mucus, can cause choking and disrupt sleep.

What can I do?

Discuss your symptoms with your health care team. They may recommend the use of a portable suction machine or certain medications that help decrease saliva or mucus. These may include:

  • Decongestants and over-the-counter cold and allergy medications
  • Expectorant (cough syrup)
  • Antidepressants, such as amitriptyline, which have been prescribed in some cases to reduce saliva and make sleeping easier
  • Anticholinergic drugs, which reduce spasms of smooth muscle in the bronchi and decrease gastric, bronchial, and salivary secretions
  • Transderm V patches, which are usually used for motion sickness and tend to dry saliva
  • SSK1 (potassium iodide) — 10 drops in a glass of water 2-3 times per day (this may take one to two weeks to be effective)

Try these simple home remedies for treating thick mucus:

  • Drink apple juice, grape juice, or hot tea with lemon
  • Coat your tongue with a mixture of meat tenderizer and a little water
  • Place papaya extract on your tongue
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Dry Mouth

Like excessive salivation, dry mouth can cause thick mucus to build, which can lead to choking.

What causes dry mouth?

There are several triggers that can lead to dry mouth, which include:

  • Breathing mostly through the mouth rather than the nose
  • Side effect from certain medications
  • Stress, chronic anxiety, or depression
  • Smoking
What can I do?
  • Make a conscious effort to breathe through your nose
  • Drink more liquids – ask a speech pathologist or dietitian about the right consistency of liquids
  • Use a vaporizer
  • Ask your pharmacist about oral rinses, artificial saliva spray, and tablets
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Tube Feeding

If you are experiencing significant weight loss and prolonged difficulty eating, your doctor may recommend a gastrostomy tube (also called a G-tube). Through a surgical procedure typically performed under mild sedation, a tube is inserted through the abdominal wall directly into the stomach. The tube allows for the direct delivery of nutritional formulas to the stomach.

The most common feeding tube for patients with neuromuscular disorders is a percutaneous endoscopic gastrostomy (PEG) tube.

 

PEG Tube, and kit

PEG tube, cannula and guidewire

 

Can I still eat and drink?

Some people continue to eat and drink by mouth, and use the feeding tube to supplement their nutritional requirements. For some people, the feeding tube becomes the primary source of food energy. Even when all nutrients are supplied by the feeding tube, it is still important to drink water to ensure proper hydration.

A lack of physical activity or adequate fiber or water in the diet may cause constipation. For those using tube feeding, it may be especially difficult attaining sufficient fiber and hydration. If you are experiencing constipation, ask a dietitian about ways to add more fiber to your diet or discuss other remedies with your doctor.

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