Lifestyle Changes
Living with Pompe disease often means making thoughtful adjustments to your daily routines. Fatigue and muscle weakness can affect work, school, travel, and everyday tasks. Changes to your diet and exercise can help you conserve energy, maintain independence, and stay engaged in the activities that matter most. Although they are not necessarily treatments, they can help your quality of life.
“It was really hard to accept the limitations at first,” says Heather Shorten, who lives with late-onset Pompe disease and is founder and the executive director of Pompe Alliance, a Pompe disease organization in Ohio. “But I learned to reframe how I thought about it. Before my diagnosis, I could take the stairs; now, I take the escalator. It’s just about changing how I do things so I can still enjoy them.”
Pompe disease varies dramatically in severity. For some, it may only require minor tweaks to daily habits. For others, it can be legitimately debilitating and may demand wholesale lifestyle changes.
Diet and Nutrition
Because Pompe disease can weaken the muscles you use for chewing and swallowing, you may need to adjust what and how you eat. Consider working with a dietitian to make sure you’re getting the nutrients to feel your best.
It may help to consider a diet that includes:
- Ample Protein Good protein sources include lean meats, fish, eggs, beans, soy, and dairy products. Marrero-Stein suggests that proteins make up 30 percent of your total caloric intake.
- Smart Carbohydrates Whole grains and high-fiber fruits are better choices than sugary snacks to help you get enough nutrients and avoid weight gain. Eating small portions throughout the day can also keep your energy steady.
- Softer Textures If chewing feels tiring or swallowing is difficult, try mashing or moistening foods. “Don’t feel compelled to try to finish everything on that plate when you’re having difficulty swallowing,” says Marrero-Stein, who also recommends a swallowing study to make sure food and liquid is not entering your airway, known as aspiration.
- Smaller Portions Eating less but more often can help prevent fatigue and ease digestion.
Exercise and Movement
Although people with Pompe disease were once told to avoid activity, experts now encourage gentle, regular movement to keep your muscles active. In addition to physical therapy, exercises may include:
- Strength Training Resistance training can help you maintain muscle function.
- Flexibility and Mobility Work A stretching routine can reduce stiffness.
- Aerobic Activities These may include walking, cycling, and swimming.
Talk to your doctor and physical therapist about what exercises might be appropriate for you.
Read the full article here
