Nutrition resources

Nutrients provide the fuel your body needs to function and stay healthy. While research has not identified a specific diet that reduces DM symptoms, general healthy eating guidelines apply to most people living with myotonic dystrophy.

The following are some general nutrition guidelines that can be helpful.

• Eat a well-balanced diet with protein, whole grains (like oatmeal or whole grain bread), unsaturated fats (like avocado, salmon, nuts, or olive oil), and water. Avoid sugary drinks, too much caffeine, and saturated fats (such as fried foods, processed foods, deli meats).
• Add fruits and vegetables where you can.
• Do not skip meals.
• Take a daily multivitamin if recommended, especially if you take medications that may cause nutrient loss (for example, steroids may lower calcium and vitamin D levels). Always consult your doctor before starting new supplements.
• Spread out meals/snacks throughout the day.
• Drink at least 6-8 glasses of water a day.

For more information on nutrition and DM including sample mini-meals and snack lists, managing constipation, being over or underweight, managing swallowing problems, modified foods, feeding tubes, supplements, and where to get answers see MDF’s Nutrition Guide for People Living with Myotonic Dystrophy. For recipe ideas check out MDF Cooks a recipe book put together by the MDF community tailored towards people with swallowing difficulties.

Swallowing Issues

Myotonic dystrophy can cause weakness or myotonia in the mouth, tongue, and throat, making it harder to bite, chew, and swallow. If your throat and tongue muscles are weak, you may accidentally breathe in something that does not belong in your lungs, like a piece of food. This is called aspiration. When food gets into your lungs or airways, it can lead to pneumonia, so it is a serious concern if you are living with myotonic dystrophy.

Difficulty swallowing is known as dysphagia. If you experience dysphagia, you may notice:

• Trouble managing liquids or solids
• Food or liquid leaking from your nose
• Food “sticking” in your throat
• Pain when swallowing
• Coughing during or after meals
• Changes in breathing while eating
• You avoid particular foods
• Unintended weight loss or dehydration
• Difficulty with cold foods or drinks
• Fatigue during meals

Evaluating Dysphagia

If you are experiencing swallowing challenges, your provider may recommend a clinical swallowing evaluation. In most cases, this is a referral to a speech pathologist. They may:

• Ask about your symptoms
• Perform a physical exam
• Observe you swallowing different textures
• Recommend further tests to identify the cause of your swallowing issues and what can be done to help ease your symptoms

Treatments and Interventions

The types of treatments and interventions for dysphagia vary. Work with your provider to determine the best options for you, your specific symptoms, and the food you like to eat.

Treatments might include the following:

• Diet modification (soft, moist solids; thickened liquids, avoiding cold items, liquid supplements)
• Aid of equipment or utensils (e.g., cups that slow the flow of liquid like a coffee cup)
• Maneuvers (a speech pathologist would work through different maneuver options with you in a clinical setting and see what works best for you given your abilities)
• Pacing and eating strategies (small bites and sips)
• Postural/position techniques (chin tuck i.e., tilting your chin down while you swallow, eating/drinking in an upright position)
• Avoiding foods that are difficult to swallow such as popcorn, nuts, or other hard/crunchy foods
• Education/counseling on aspiration precautions
• Counseling on alternative means of nutrition such as:
  • Feeding tube: A tube that provides nutrition to the digestive system. Feeding tubes can be temporary, or long-term.
    • Nasogastric tube: A temporary, soft, flexible tube inserted through the nose, down the esophagus, and into the stomach to provide nutrition, administer medication, or drain stomach contents.
    • Gastronomy tube: A long-term feeding tube inserted through a surgical opening in the abdomen directly into the stomach to deliver nutrition, fluids, and medication.

While dysphagia and aspiration can add challenges to daily life, there are many proven approaches to help keep you safe and supported. By learning what works best for you and staying connected with your medical team, you can continue to enjoy food and maintain your well-being.

Want to learn more? Check out MDF’s Digital Academy resources on Nutrition and Swallowing in the related videos section further down.