Therapy Plan for Muscular Dystrophy
Muscular dystrophy (MD) is a group of genetic conditions that cause progressive muscle weakness and loss of muscle mass. The most common forms — Duchenne and Becker — primarily affect boys, though many other types exist across all ages and genders. Physiotherapy and occupational therapy are the foundation of care, focused on maintaining function, preventing contractures, and maximizing independence at every stage. While muscular dystrophy is progressive, proactive therapy and adaptive strategies can significantly extend mobility, comfort, and quality of life.
Recommended Therapies at a Glance
| Therapy | Priority | Best Ages | Frequency | Funded? |
|---|---|---|---|---|
| Physiotherapy | Essential | All ages | 2-3 sessions/week | Yes |
| Occupational Therapy | Essential | All ages | 1-2 sessions/week | Yes |
| ADL Training | Essential | All ages | 1-2 sessions/week | Yes |
| Hydrotherapy | Recommended | All ages | 1-2 sessions/week | Varies |
| Assistive Technology | Recommended | All ages | Periodic assessments + training | Yes |
| Peer Mentoring | Recommended | 10+ years | Biweekly to monthly | Varies |
| Music Therapy | Beneficial | All ages | 1 session/week | Varies |
| Yoga & Mindfulness | Beneficial | 8+ years | 1-2 sessions/week | Varies |
| Social Recreation | Beneficial | 5+ years | 1-2 sessions/week | Varies |
Early Childhood (0-5 years)
Early intervention sets the tone for your child's entire journey. Building strength and flexibility now, while your child is most active, creates reserves that make a real difference down the road.
Essential Therapies
Introduce at This Stage
Sample Weekly Schedule
| Day | Activity | Duration |
|---|---|---|
| Monday | Physiotherapy (strength and stretching) | 45 min |
| Wednesday | Occupational therapy (fine motor, play skills) | 45 min |
| Friday | Hydrotherapy (pool-based movement) | 30-45 min |
Focus on gentle stretching to prevent early contractures, especially in the ankles and hips. Encourage active play and movement without overexertion. Night splints may be introduced to maintain ankle flexibility. Get baseline assessments for pulmonary and cardiac function. Connect with Muscular Dystrophy Canada for family support from the start.
School Years (6-12 years)
Your child is navigating school and friendships alongside their condition. Accessible environments, adaptive equipment, and inclusive activities help them participate fully and build confidence.
Essential Therapies
Introduce at This Stage
Sample Weekly Schedule
| Day | Activity | Duration |
|---|---|---|
| Monday | Physiotherapy (stretching, functional mobility) | 60 min |
| Tuesday | Occupational therapy (school tasks, ADL skills) | 45 min |
| Wednesday | Hydrotherapy | 45 min |
| Thursday | Assistive technology training | 30-45 min |
| Saturday | Adaptive social recreation | 60-90 min |
This is often the period when walking becomes more difficult, particularly for Duchenne MD. Prepare for wheelchair transition proactively and positively — a wheelchair is a tool for freedom, not a loss. Ensure the school is fully accessible with an IEP that includes physical accommodations. Power wheelchair assessment should happen before walking becomes unsafe, not after a fall. Continue stretching to prevent contractures in the hips, knees, and ankles.
Teen Years (13-17 years)
Adolescence brings new challenges and opportunities for independence. Your teenager's voice should lead their care planning — their goals and preferences matter most.
Essential Therapies
Introduce at This Stage
Sample Weekly Schedule
| Day | Activity | Duration |
|---|---|---|
| Monday | Physiotherapy (respiratory and upper body) | 60 min |
| Tuesday | Occupational therapy (independence skills) | 45 min |
| Wednesday | Hydrotherapy (gentle) | 45 min |
| Thursday | Music therapy or social recreation | 60 min |
| Biweekly | Peer mentoring | 60 min |
Respiratory therapy becomes increasingly important — teach cough assist techniques and monitor lung capacity regularly. Focus OT on power wheelchair skills, computer access, and environmental controls. Address mental health proactively, as teens may grieve lost abilities. Transition planning for post-secondary education or employment should begin. Connect with Muscular Dystrophy Canada's youth programs and peer networks.
Young Adult (18-30 years)
Young adulthood is about building the life you want with the right supports in place. Assistive technology, personal care attendants, and community connections open doors to education, work, and relationships.
Essential Therapies
Sample Weekly Schedule
| Day | Activity | Duration |
|---|---|---|
| Monday | Physiotherapy (respiratory, range of motion) | 45-60 min |
| Wednesday | Occupational therapy (technology, home setup) | 45 min |
| Friday | Yoga/mindfulness (adapted) | 45 min |
| Biweekly | Peer mentoring or social recreation | 60-90 min |
Transition from pediatric to adult medical care requires proactive planning — adult neuromuscular clinics may have different structures. Explore provincial programs for attendant care, accessible housing, and assistive devices. Technology like voice-controlled smart home systems, eye-tracking computers, and power wheelchair upgrades can dramatically increase independence. Maintain cardiac and respiratory monitoring. RDSP and disability benefits planning should be in place.
Long-Term Management (30+ years)
Long-term management is about maintaining comfort, preventing complications, and continuing to live life on your terms. Your care team adapts with you through every change.
Essential Therapies
Sample Weekly Schedule
| Day | Activity | Duration |
|---|---|---|
| Monday | Physiotherapy (respiratory, positioning, comfort) | 45 min |
| Wednesday | Occupational therapy (equipment optimization) | 45 min |
| As needed | Music therapy or relaxation | 30-45 min |
| Monthly | Peer support group | 60 min |
Focus on respiratory care, skin integrity, seating optimization, and pain management. Regular cardiac monitoring is essential. Ensure ventilation equipment (BiPAP/CPAP) is properly fitted and used. Caregiver support and respite are crucial — burnout affects the entire care system. Continue to pursue social connections and meaningful activities. Advance care planning should be discussed with the medical team when the individual is ready.
Build Your Therapy Team
Neuromuscular Neurologist
Monitors disease progression, manages steroid therapy (for Duchenne), coordinates cardiac and respiratory monitoring, and stays current on emerging treatments and clinical trials.
Physiotherapist (Neuromuscular Specialist)
Designs stretching and exercise programs to maintain range of motion, prevent contractures, and support respiratory function. Adjusts approach as the condition progresses.
Occupational Therapist
Addresses independence in daily living, recommends and trains on adaptive equipment, assesses wheelchair seating, and modifies home and school environments for accessibility.
Respiratory Therapist
Monitors lung function, teaches cough assist techniques, fits and manages ventilation equipment (BiPAP/CPAP), and provides respiratory crisis planning.
Social Worker
Navigates funding applications, disability benefits, respite care, attendant services, and emotional support for the entire family. A crucial coordinator of non-medical services.
Coordination Tips
- Attend a multidisciplinary neuromuscular clinic if one is available in your province — having all specialists in one visit saves energy and ensures coordinated care.
- Keep a shared document tracking current range of motion measurements, respiratory function numbers, and equipment needs so all providers work from the same data.
- Plan wheelchair and equipment transitions well ahead of need. Waiting until function is lost leads to falls, frustration, and emergency decisions.
- Coordinate school accommodations with your OT and physiotherapist — they can provide specific recommendations for IEP meetings that go beyond generic accommodations.
- Connect with Muscular Dystrophy Canada early and stay connected. They offer equipment loans, summer camps, peer mentoring, and family support that complement clinical therapy.
Annual Cost Estimate
These are theoretical maximums if paying fully out-of-pocket for private therapy. In practice, most families combine public services, provincial funding, insurance, and tax credits — and focus on the 2-3 therapies with the most evidence for their situation.
Essential Only
$10,000 - $18,000
1-2 core therapies (private rates)
Full Program
$22,000 - $35,000
All therapies at private rates — rarely needed
Realistic Out-of-Pocket
$4,000 - $12,000
With public services, provincial funding + tax credits
How to Reduce Therapy Costs
- Most families focus on 2-3 core therapies, not all of them. Prioritize based on what has the biggest impact right now.
- Many therapies are available free through the public system — schools, children's treatment centres, and community health centres provide speech, OT, and physio at no cost (though waitlists can be long).
- Provincial autism/disability programs often cover the most expensive therapies — apply immediately after diagnosis, as waitlists can be 1-2 years.
- University and college clinics offer supervised therapy sessions at 40-60% below private rates.
- Group therapy sessions are typically 30-50% cheaper than individual sessions and provide additional social benefits.
- All therapy costs can be claimed on the Medical Expense Tax Credit (METC, line 33099) — this includes travel costs over 40km to appointments.
- The Disability Tax Credit (DTC) unlocks the Child Disability Benefit ($3,411/year) which can directly offset therapy costs.
- Employer benefits plans may cover therapy — many now include speech, OT, and psychology with $500-2,000/year limits.
Questions to Ask a New Therapist
- 1What are the qualifications and experience with this specific condition?
- 2What does a typical session look like, and how do participants and families get involved?
- 3How is progress measured, and how often are updates shared?
- 4How long before meaningful improvement is typically expected?
- 5Is there coordination with other therapists and the school team?
- 6What can be done at home to reinforce what is worked on in sessions?
- 7What is the cancellation policy, and are makeup sessions offered?
- 8Is direct billing available through insurance providers?
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