Living with Pompe: Day to Day

Adapted exercise is essential in Pompe disease:

• **Moderate aerobic exercise**: Walking, swimming, stationary cycling: improves endurance and cardiovascular function

• **Gentle strength training**: Under physiotherapist supervision, strengthens muscles that still function

• **Breathing exercises**: Ventilation techniques and diaphragm strengthening

• **Stretching**: Maintains flexibility and prevents contractures

Important: Avoid overtraining. Excessive fatigue can worsen symptoms. Always work with your rehabilitation team.

Nutrition

Diet plays an important role in managing Pompe disease:

• **High-protein diet**: Helps preserve muscle mass

• **Weight management**: Excess weight increases the load on weakened muscles

• **Adequate hydration**: Especially before and after infusions

• **Supplements**: Your doctor may recommend vitamin D, calcium or others based on your blood tests

If you have difficulty swallowing (dysphagia), a speech-language therapist can teach you safe swallowing techniques and your dietitian will adapt food textures.

Fatigue management

Fatigue is one of the most limiting symptoms of Pompe disease. Strategies for managing it:

• **Plan your energy**: Spread activities throughout the day with rest periods

• **Prioritize**: Identify which activities are most important and save energy for them

• **Adapt your environment**: Assistive devices, ergonomic furniture, home automation

• **Sleep well**: Nocturnal hypoventilation worsens fatigue: if you snore heavily or wake up tired, discuss it with your pulmonologist

• **Ask for help**: Do not try to do everything on your own. Rely on your social network and available resources

Workplace and social adaptations

Living with Pompe may require adaptations at work and in social life:

• **Work**: Workplace accommodations, remote work, reduced hours, disability certificate

• **Mobility**: Wheelchair, scooter, vehicle adaptations, accessible parking

• **Home**: Barrier removal, hoists, adapted bathroom

• **Benefits**: Disability rating, dependency benefits, social welfare programs

Your social worker and patient associations can guide you to the resources available in your community.