Living with Pompe disease—or caring for someone who does—can make exercise feel intimidating. Fatigue, muscle weakness, and the demands of daily life often make consistent movement seem out of reach. But staying active isn’t about pushing yourself to the limit—it’s about protecting your muscle health, improving energy levels, and building confidence in what your body can do.
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Why Movement Matters
For patients with Pompe disease, exercise is more than a wellness recommendation—it’s a clinically supported part of long-term care. Research by Tarnopolsky & Nilsson (2018) has shown that resistance and aerobic exercise can:
- Improve muscle strength and endurance
- Increase aerobic capacity (VO2max)
- Reduce body fat and help manage sarcopenic obesity
- Improve blood sugar regulation, mood, and energy
- Enhance daily function (e.g., walking, stair-climbing, posture)
Exercise also complements enzyme replacement therapy (ERT), with research showing that combining ERT with regular movement improves walking distance and functional outcomes more than ERT alone (Tarnopolsky & Nilsson 2018)
And it’s not just about mobility. Respiratory training, particularly in late-onset Pompe disease, has led to 15–45% improvements in breathing capacity—even in ventilator-dependent patients (Tarnopolsky & Nilsson 2018). Maintaining respiratory strength is essential for long-term independence and quality of life.
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Tips for Staying Motivated
Most individuals impacted by Pompe disease understand the importance of exercise; however, day-to-day commitment to it is a challenge for many. Here are tangible tips to help you stay on track—even on tough days:
1. Build a Plan with Your Care Team
It is crucial to build an exercise plan with your physiotherapist or another care provider to ensure the plan is both safe and effective. Be honest about your availability and limitations so your plan is realistic and sustainable.
2. Start Small
When you are beginning to build your exercise routine, start with short, low-to-moderate intensity exercises 3–5 times per week. For example:
- Endurance: Walking, cycling, swimming
- Resistance: Bodyweight exercises, resistance bands, light weights (2–3 times/week)
- Respiratory: Breathing exercises using inspiratory/expiratory devices (daily or as advised)
3. Consider Small Bursts of Activity
If you find that a 30-minute workout is too much – either physically or time-wise – consider doing three 10-minute workouts spread throughout the day.
4. Pair Movement with Joy
Consider incorporating things you love into your exercise plan. If you have a favourite podcast or TV show, have them on in the background while you are strength training. For the extroverts out there, schedule walk-and-talks with friends or consider signing up for classes at your local gym.
5. Create a Reward System
On days when motivation is low, try rewarding yourself after your workout with a fun treat, your favourite show, or some down time. Get creative with it and change the rewards as often as you need to keep you excited.
6. Buddy System
Having someone check in with you—or even just send a text reminder—can help you stay accountable. Consider asking a friend or family member for support.
7. Create a (Flexible) Routine
Block out time during your week to exercise, so it becomes a habit rather than a task. Of course, life can interrupt these plans so allow yourself some flexibility. If you find that you are frequently having to reschedule due to time conflicts, consider a couple of smaller blocks during the day (Tip #3) or making other adjustments.
8. Track Your Energy Patterns
If your energy fluctuates throughout the day, keep a “fatigue journal” for a week to see when you tend to feel strongest. You might discover you have a “sweet spot” (e.g., mid-morning) that’s ideal for exercise.
9. Make It Visual
Use a calendar, app, or habit tracker to record your movement. Seeing those checkmarks can be a powerful motivator—and serves as a reminder that you’re showing up, even when it feels slow.
10. Use Wearable Technology
Fitness trackers, smartwatches, or pedometers can help you monitor steps, heart rate, and activity levels. They can also remind you to move and celebrate milestones.
11. Revisit and Adjust Goals
Set SMART goals (Specific, Measurable, Achievable, Relevant, Time-bound), but review them regularly. As your strength improves—or as your needs shift—revisiting your goals helps keep your routine meaningful and motivating.
12. Try Adaptive Tools
Consider adaptive equipment to help make movement safer or easier. This might include seated resistance bands, hand weights with grips, foam rollers, or even stability aids. A physiotherapist or occupational therapist can help recommend options.
13. Turn Chores into Movement
On low-energy days, household tasks (like folding laundry while standing, tidying in short bursts, or stretching while cooking) can double as gentle movement. It all counts.
14. Use Visual or Verbal Cues
Set out your shoes, yoga mat, or resistance bands where you’ll see them. Even a sticky note reminder can nudge you toward action.
15. Celebrate Non-Physical Wins
Did try something new? Make a healthier meal choice? These wins matter, so acknowledge them! Tracking how you felt emotionally or mentally after movement can reinforce its value, even beyond the physical.
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Bringing It All Together
Exercise isn’t just about getting stronger—it’s about preserving independence, managing symptoms, and reconnecting with your body. A well-designed plan can lead to greater improvements in mobility and respiratory function than ERT alone.
Additionally, your muscles also need fuel to grow and recover. A high-protein diet (1.2–1.4g/kg/day), rich in quality sources like eggs, fish, and dairy, is important for muscle maintenance, according to the latest research (Tarnopolsky & Nilsson 2018).
If you’re just getting started, talk to your care team about creating a plan that includes:
- Aerobic and resistance training
- Respiratory exercises
- Nutritional support
And remember, you’re not alone. Connect with others in the Pompe community through CAP or online support groups.
At CAP, we’re here to support you—every step of the way. If you have suggestions or questions about staying active with Pompe, reach out to us at cap@pompecanada.com.
References:
- Tarnopolsky MA, Nilsson MI. Nutrition and exercise in Pompe disease. Ann Transl Med. 2019;7(13):282.