6 Self-Care Tips for Living With Myotonic Dystrophy


Myotonic dystrophy (DM) is a multi-systemic condition. There are literally hundreds of potential symptoms a person may experience, but thankfully few people experience all of them. Three of the most common symptoms are fatigue, gastro-intestinal complications and dysphagia (difficulty swallowing).

Two years ago I was invited to make a presentation at Stanford University’s Annual DM Information Meeting on Adults Living with DM. For my preparation I reviewed my history of making lifestyle changes and experimentation with self-care and developed a personal hierarchy of needs (a la Abraham Maslow). Sleep is the foundation of this hierarchy. Culling from
the presentation are the following six self-care tips:

1. Cultivate a healthy sleep routine. This may include avoiding food at least 3-4 hours before bedtime, eliminating screen time (computer/television/cellphone) at least one hour before bedtime, and gradually transitioning your activity by taking a warm bath.

2. Adopt the perspective of food = medicine. Look at all that you consume in your diet and examine how it fuels you. Make gradual dietary changes with enough time to evaluate if you feel better or worse with each slight change. Eat a primarily plant-based diet. Avoid processed foods and beverages. Don’t ignore swallowing difficulties; make changes to food preparation to avoid choking hazards. If you are able to, embrace soft healthy foods like hummus, avocado, mashed potatoes and foods pulverized in a blender.

3. Do what you can to increase your physical activity for both your mind and body. Seek out adaptive exercise and recreation programs in your community. Although it seems counter-intuitive, exercise really does energize. Take it slow and don’t try to prove anything to anyone.

4. Begin to explore the grieving cycle (denial, anger, bargaining, depression, and acceptance) as it relates to the acceptance of having a chronic health condition. Once there is acceptance of what is, you can focus on the attitude of what’s possible. There are many ways to cultivate a positive attitude. Consider surrounding yourself with positive people, expressing gratitude and helping others.

5. If you’re open to it, while still maintaining the medical care you require, explore alternative, non-invasive modalities of healing. What’s one person’s woo-woo is another person’s salvation. Consider that ancient cultures have a long, rich history of healing with natural remedies. Although your condition cannot yet be cured, you may experience healing and solace in ways your neurologist can’t tell you.

6. Remember the excitement as a kid when you went into a candy or toy store? Capture this feeling however you can. Maybe it’s the joy you feel around young children or the novelty of being in a new place. Or it may simply be a new perspective of gazing at the sky, trees, and flowers and feeling the awe of the world’s natural beauty.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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