Practical strategies for daily life: exercise, nutrition, fatigue management and maintaining quality of life.
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.
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 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
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.
Bibliography under review by the Foundation's clinical team.
Our support team is available 24/7 for emergencies or critical questions.
Contact nowKeep a record of your symptoms, infusions and clinical progress. This information can help you communicate better with your medical team.
Learn about the different stages of the care process and what to expect at each point.