Empowering Movement: Your Definitive Guide to Exercising with Myelomeningocele

Living with myelomeningocele presents unique challenges, yet it absolutely does not preclude a vibrant, active lifestyle. Exercise is not just beneficial; it’s crucial for maintaining health, preventing secondary complications, and enhancing overall quality of life. This guide cuts through the noise, offering clear, actionable strategies and concrete examples for individuals with myelomeningocele to integrate effective, safe exercise into their daily routines. We’ll focus on the “how-to,” providing practical advice that empowers you to move with confidence and purpose.

Understanding Your Body: The Foundation of Effective Exercise

Before diving into specific exercises, it’s vital to understand your individual body and its capabilities. Myelomeningocele impacts each person differently, with varying degrees of neurological involvement and muscle weakness. This understanding forms the bedrock of a successful exercise program.

Actionable Steps:

• Consult Your Healthcare Team: This is not optional. Before beginning any new exercise regimen, discuss your plans with your neurosurgeon, physical therapist, and occupational therapist. They can provide a comprehensive assessment of your motor function, sensory deficits, joint stability, and any contraindications. For example, your physical therapist might identify that you have good quadriceps strength but weakened hamstrings, guiding your exercise selection.

• Identify Your Baseline Function: Work with your physical therapist to establish your current level of mobility, strength, and endurance. Can you stand with assistance? How far can you walk with braces? What is your sitting balance like? This baseline helps track progress and tailor exercises. For instance, if you can only hold a seated position for 30 seconds without support, your initial focus might be on core stability exercises rather than dynamic movements.

• Recognize Potential Complications: Be aware of common secondary conditions associated with myelomeningocele that can influence exercise, such as hydrocephalus (and shunt function), tethered spinal cord, latex allergy, bowel and bladder dysfunction, and skin integrity issues. For example, if you have a shunt, strenuous exercises that significantly increase intracranial pressure might be modified. Always monitor for symptoms like headaches, nausea, or changes in vision.

• Understand Your Sensory Limitations: Many individuals with myelomeningocele have decreased sensation. This means you might not feel pain or pressure in certain areas, increasing the risk of skin breakdown or injury. Always visually inspect your skin before and after exercise, especially pressure points. For instance, if you’re using crutches, check your hands and underarms for redness or blistering.

• Embrace Adaptive Equipment: Wheelchairs, walkers, crutches, braces (AFOs, KAFOs), and other assistive devices are not limitations; they are enablers. Learn how to use them effectively and incorporate them into your exercise routine. Your physical therapist can help you find the right fit and teach you proper usage techniques. A person using a wheelchair, for instance, will focus on upper body strength and core stability, using their chair as a stable base.

Building a Strong Foundation: Core Strength and Stability

A strong core is paramount for individuals with myelomeningocele, regardless of ambulatory status. It provides stability for upright activities, improves posture, and enhances overall functional movement.

Actionable Strategies and Examples:

• Seated Postural Holds:
  • How to do it: Sit upright in a stable chair with your feet flat on the floor (if possible) or supported. Imagine a string pulling the crown of your head towards the ceiling. Engage your abdominal muscles by pulling your belly button towards your spine. Hold this position without slouching.

  • Example: Start by holding for 30 seconds, 3-5 times. Gradually increase the duration as your strength improves. You can challenge yourself by trying to maintain this posture while performing simple arm movements, like reaching for an object.

• Trunk Rotations (Seated or Supine):

  • How to do it (Seated): Sit tall, cross your arms over your chest. Gently rotate your upper body to one side, leading with your shoulders. Keep your hips facing forward. Return to center and repeat on the other side.

  • How to do it (Supine): Lie on your back with knees bent and feet flat on the floor (if able). Keep your shoulders pressed into the floor. Gently let your knees fall to one side, then return to center and repeat on the other.

  • Example: Perform 10-15 repetitions on each side, 2-3 sets. For the supine version, if your legs have limited movement, you can assist the movement by gently guiding your knees with your hands.

• Pelvic Tilts (Supine):

  • How to do it: Lie on your back with knees bent and feet flat (if able). Flatten your lower back into the floor by tilting your pelvis upwards, engaging your abdominal muscles. Relax and repeat.

  • Example: Perform 10-15 repetitions, 2-3 sets. This exercise helps activate the deep core muscles crucial for spinal stability.

• Bridging (Modified):

  • How to do it: Lie on your back with knees bent and feet flat (if able). If leg strength is limited, you can use your arms to push off the floor, or have a caregiver provide gentle assistance to lift your hips slightly off the floor. Focus on engaging your glutes and lower back muscles.

  • Example: Hold for 5-10 seconds, 5-8 repetitions. This exercise strengthens the glutes and hamstrings, which are vital for hip stability and some aspects of ambulation.

• Superman (Modified):

  • How to do it: Lie on your stomach (prone position). If you have a shunt, discuss this position with your doctor first. Gently lift your head and chest slightly off the floor, extending your arms forward (or to the sides if more comfortable). Focus on engaging your back muscles.

  • Example: Hold for 3-5 seconds, 5-8 repetitions. This strengthens the erector spinae muscles, essential for back extension and posture.

Strengthening Your Limbs: Upper Body, Lower Body, and Adaptive Approaches

Strength training is critical for individuals with myelomeningocele, regardless of the level of lower extremity function. It helps maintain muscle mass, improves functional independence, and supports activities of daily living.

Upper Body Strength: Your Powerhouse for Mobility

For many, the upper body becomes the primary driver of mobility, whether for propelling a wheelchair, using crutches, or transferring.

Actionable Strategies and Examples:

• Push-ups (Wall, Incline, or Kneeling):
  • How to do it:
    • Wall Push-ups: Stand facing a wall, about arm’s length away. Place your hands on the wall shoulder-width apart. Lean into the wall, bending your elbows, then push back.

    • Incline Push-ups: Place your hands on a sturdy elevated surface (e.g., a bench, sturdy table). The higher the surface, the easier.

    • Kneeling Push-ups: On hands and knees, lower your chest towards the floor, keeping your core engaged.

  • Example: Aim for 3 sets of 8-12 repetitions. These strengthen your chest, shoulders, and triceps – crucial for propulsion and transfers.

• Dips (Chair or Parallel Bars):

  • How to do it:
    • Chair Dips: Sit on the edge of a sturdy chair. Place your hands on the edge, fingers pointing forward. Scoot your hips off the chair. Bend your elbows to lower your body, then push back up. Keep your back close to the chair.

    • Parallel Bar Dips: If accessible, use parallel bars. This is a more advanced option.

  • Example: 3 sets of 6-10 repetitions. Excellent for triceps and chest strength, directly applicable to transfers.

• Overhead Presses (Dumbbells or Resistance Bands):

  • How to do it: Sit or stand tall. Hold dumbbells at shoulder height, palms facing forward. Press the weights straight up overhead, then slowly lower them. Alternatively, use a resistance band anchored under your feet or chair, pressing the handles overhead.

  • Example: 3 sets of 10-15 repetitions. Builds shoulder strength, vital for reaching and lifting.

• Rows (Dumbbells, Resistance Bands, or Seated Row Machine):

  • How to do it:
    • Dumbbell Rows: Lean forward slightly from a seated position (or kneel with one hand on a bench). Pull a dumbbell towards your chest, squeezing your shoulder blade.

    • Resistance Band Rows: Anchor a band to a sturdy object at chest height. Pull the band towards you, squeezing your shoulder blades.

    • Seated Row Machine: Use a gym machine designed for seated rows.

  • Example: 3 sets of 10-15 repetitions. Strengthens your back muscles, which are essential for posture and balance.

• Bicep Curls (Dumbbells or Resistance Bands):

  • How to do it: Sit or stand tall. Hold dumbbells with palms facing up. Curl the weights towards your shoulders, keeping your elbows tucked in. Slowly lower.

  • Example: 3 sets of 10-15 repetitions. Strengthens the biceps, useful for pulling and lifting.

Lower Body Strength: Maximizing Remaining Function

Even with significant lower extremity weakness, maximizing the strength of available muscle groups is crucial for stability, transfers, and any level of assisted ambulation.

Actionable Strategies and Examples:

• Assisted Squats (Chair or Wall):
  • How to do it:
    • Chair Squats: Stand in front of a sturdy chair. Gently lower yourself to sit, then push back up. Use your arms for assistance as needed. Focus on controlling the movement.

    • Wall Squats: Lean your back against a wall, feet shoulder-width apart. Slide down the wall as if sitting in an imaginary chair. Hold.

  • Example: 3 sets of 8-12 repetitions for chair squats, or hold for 15-30 seconds for wall squats, 3-5 times. These strengthen quadriceps and glutes.

• Leg Presses (Machine or Resistance Band):

  • How to do it: Use a leg press machine at a gym, adjusting the weight to a comfortable level. Alternatively, sit in a chair and loop a resistance band around your feet, pushing against the resistance.

  • Example: 3 sets of 10-15 repetitions. Works the quadriceps, hamstrings, and glutes in a controlled manner.

• Hamstring Curls (Machine or Resistance Band):

  • How to do it: Use a hamstring curl machine, or loop a resistance band around your ankles and anchor it to a sturdy object, pulling your heels towards your glutes.

  • Example: 3 sets of 10-15 repetitions. Focuses on the hamstrings, important for knee flexion.

• Calf Raises (Seated or Standing with Support):

  • How to do it:
    • Seated Calf Raises: Sit with your feet flat on the floor. Place a weight on your knees (or use your hands for resistance). Lift your heels as high as possible.

    • Standing Calf Raises: Stand holding onto a stable support (e.g., a railing). Lift onto your toes, then slowly lower.

  • Example: 3 sets of 15-20 repetitions. Strengthens calf muscles, important for ankle stability and push-off in walking.

• Hip Abduction/Adduction (Resistance Band or Machine):

  • How to do it:
    • Abduction: Lie on your side or stand with support. Loop a resistance band around your ankles and lift your top leg straight out to the side.

    • Adduction: Loop a resistance band around your ankles and cross one leg over the other, pulling it towards the midline. Alternatively, use a hip abduction/adduction machine.

  • Example: 3 sets of 12-15 repetitions per leg. Strengthens outer and inner thigh muscles, contributing to hip stability.

Enhancing Mobility and Cardiovascular Health

Beyond strength, improving mobility and cardiovascular fitness is crucial for overall health and independence.

Mobility and Flexibility: Preventing Contractures and Improving Range of Motion

Maintaining flexibility is critical to prevent contractures (permanent shortening of muscles or tendons) and optimize range of motion, which directly impacts functional abilities.

Actionable Strategies and Examples:

• Gentle Stretching: Hold each stretch for 20-30 seconds, breathing deeply. Never stretch to the point of pain.
  • Hamstring Stretch: Sit with legs extended (if able), or lie on your back. Gently pull your knee towards your chest, or use a strap to gently extend your leg upwards.

  • Hip Flexor Stretch: Kneel on one knee (if able), or lie on your back and gently draw one knee to your chest while keeping the other leg extended.

  • Calf Stretch: Stand facing a wall, place hands on the wall. Step one foot back, keeping the heel down, and lean into the stretch. For seated, pull your toes towards you with a strap.

  • Chest Stretch: Stand in a doorway, place forearms on the doorframe, and gently lean forward.

  • Shoulder Girdle Stretches: Gentle arm circles, arm across chest stretch.

  • Example: Perform these stretches daily, especially after exercise, to improve and maintain flexibility. Focus on areas prone to tightness based on your individual mobility.

• Range of Motion Exercises (Passive or Active-Assisted):

  • How to do it: Gently move your joints through their full available range of motion. If you have limited active movement, a caregiver can assist (passive range of motion).

  • Example: Perform ankle circles, knee bends (if able), hip rotations, shoulder rotations, and wrist circles. Aim for 10-15 repetitions per joint, 1-2 times daily.

Cardiovascular Fitness: Boosting Endurance and Heart Health

Cardiovascular exercise improves heart health, endurance, and overall energy levels. Adaptations are key here.

Actionable Strategies and Examples:

• Wheelchair Propulsion (Manual Wheelchair Users):
  • How to do it: Focus on smooth, efficient strokes. Use your whole arm, pushing through the entire rim, not just the top. Vary your speed and distance.

  • Example: Start with 15-20 minutes of continuous propulsion at a moderate pace, 3-5 times a week. Incorporate short bursts of faster propulsion (intervals) for added challenge.

• Arm Ergometer (Arm Bike):

  • How to do it: Sit comfortably in front of an arm ergometer. Pedal with your arms, maintaining a steady pace. Adjust resistance as needed.

  • Example: 20-30 minutes, 3-4 times a week. This provides excellent upper body cardio without lower body involvement.

• Swimming or Water Aerobics:

  • How to do it: The buoyancy of water reduces the impact of gravity, making movement easier and safer. Focus on arm strokes (freestyle, breaststroke), leg kicks if able, or water walking with assistance. Many community pools offer adaptive swim programs.

  • Example: Start with 30-45 minute sessions, 2-3 times a week. Water exercise is particularly beneficial for joint health and muscle activation.

• Hand Cycling:

  • How to do it: Use a hand cycle, either a standalone unit or an attachment for your wheelchair. This is a great way to get outdoor cardio.

  • Example: Begin with shorter rides (20-30 minutes) on flat terrain and gradually increase distance and explore varied terrain as you build endurance.

• Functional Mobility Training (for Ambulatory Individuals):

  • How to do it: Focus on activities that mimic daily movements. This could include walking with braces and crutches for increasing distances, practicing standing transitions, or navigating different terrains (e.g., ramps, uneven surfaces) with proper technique.

  • Example: Aim for 30 minutes of walking/ambulation activities most days of the week, broken into shorter intervals if necessary. For instance, walk for 10 minutes, rest, then walk for another 10 minutes.

Incorporating Daily Movement and Functional Activities

Exercise doesn’t always mean a formal workout. Integrating movement into your daily life is equally important for individuals with myelomeningocele.

Actionable Strategies and Examples:

• Active Transfers:
  • How to do it: Whenever possible, use your own strength to transfer from your wheelchair to a bed, chair, or toilet. Avoid relying solely on assistance. This strengthens your upper body and core.

  • Example: Practice independent transfers multiple times a day. If you typically use a slide board, try to reduce reliance on it over time as your strength improves.

• Reaching and Grasping:

  • How to do it: Actively reach for objects on high shelves, low cabinets, or across your body. This improves shoulder mobility, trunk rotation, and fine motor skills.

  • Example: Instead of asking for help, try to retrieve items yourself, even if it requires extra effort or a small adjustment to your position.

• Propelling Your Own Wheelchair (if applicable):

  • How to do it: Avoid being pushed unless absolutely necessary. Propel yourself as much as possible, even for short distances.

  • Example: When out with friends, take responsibility for propelling your own chair. If you’re going to the mailbox, propel your chair instead of riding in a motorized scooter (if you typically use one).

• Adaptive Sports and Recreation:

  • How to do it: Explore adaptive sports like wheelchair basketball, tennis, handcycling, swimming, or adaptive yoga. These activities make exercise enjoyable and provide social benefits.

  • Example: Look for local adaptive sports organizations or community centers that offer programs. Participating in a weekly wheelchair basketball game can provide a fun and challenging cardio and strength workout.

• Household Chores as Exercise:

  • How to do it: Many daily chores can be excellent forms of exercise. Dusting, wiping surfaces, folding laundry, or loading a dishwasher from your chair all involve reaching, twisting, and core engagement.

  • Example: Instead of rushing through chores, approach them as opportunities for movement. Take your time, focus on controlled movements, and engage your muscles.

Crucial Considerations for Safe and Effective Exercise

Safety is paramount when exercising with myelomeningocele. Being proactive and mindful of your body is essential.

Actionable Strategies and Examples:

• Listen to Your Body: This cannot be overstressed. Fatigue, pain, or discomfort are signals. Differentiate between muscle fatigue (good) and joint pain or sharp pain (bad).

• Proper Positioning and Alignment: Always ensure proper body mechanics to prevent injury and maximize exercise effectiveness. Your physical therapist can provide personalized guidance. For example, when performing seated exercises, ensure your spine is aligned and your hips are evenly weighted.

• Skin Care and Pressure Relief: Regularly check your skin for redness, blisters, or pressure sores, especially after weight-bearing or repetitive activities. Use appropriate cushioning in your wheelchair and during exercises.

• Hydration: Drink plenty of water before, during, and after exercise, especially if you have neurogenic bladder dysfunction.

• Temperature Regulation: Be mindful of overheating, especially if you have impaired sensation or autonomic dysfunction. Wear breathable clothing and exercise in a cool environment.

• Gradual Progression: Start slowly and gradually increase the intensity, duration, and frequency of your workouts. Don’t try to do too much too soon. For instance, if you start with 15 minutes of arm cycling, gradually increase to 20, then 25 minutes over several weeks.

• Warm-up and Cool-down: Always begin with 5-10 minutes of light aerobic activity and dynamic stretches to prepare your muscles. End with 5-10 minutes of static stretching to improve flexibility and aid recovery.

• Foot and Ankle Care: If you have sensation in your feet, wear supportive footwear. If sensation is impaired, regularly check your feet for any signs of pressure, rubbing, or injury, even if you don’t feel it.

• Bowel and Bladder Management: Plan your exercise sessions around your bowel and bladder routines to minimize interruptions and maximize comfort.

• Social Support: Exercise can be more enjoyable and sustainable with support. Consider exercising with a friend, joining an adaptive sports team, or working with a personal trainer experienced in adaptive fitness.

Conclusion

Exercising with myelomeningocele is a journey of empowerment, discovery, and continuous adaptation. It’s about understanding your unique body, embracing your capabilities, and consistently challenging yourself within safe and practical limits. By implementing the actionable strategies and examples outlined in this guide, you can unlock a world of improved strength, mobility, and cardiovascular health. Remember that every movement, every stretch, and every effort contributes to a stronger, healthier, and more independent you. Start today, be consistent, and celebrate every victory along the way.