Occupational Therapy for SMA

Overview
Occupational therapy (OT) can help people with spinal muscular atrophy (SMA) increase independence in daily activities at home, work and in school. An occupational therapist plays an essential role in helping people with SMA walk, dress themselves, write, use a computer, or drive.

To help with physical limitations, occupational therapists typically recommend assistive devices for improving or maintaining mobility and making homes accessible for wheelchairs. OTs often work with schools to provide modifications at school for children with SMA, including avoiding fatigue from upper extremity activities such as keyboarding. OTs also teach people with SMA how to prevent or reduce complications, conserve energy, and avoid overuse of muscles.

Occupational therapists are key members of a multidisciplinary SMA health care team that includes physical, respiratory, and speech therapists as well as dieticians, surgeons, and primary care doctors or pediatricians.

What does it involve?
On the initial visit, an OT may conduct several tests to evaluate a person’s abilities and needs, then recommendation interventions or treatments that could help maximize activity and participation.

Occupational therapy treatments for adults and children may include:

Assistive devices. OTs help people with SMA learn how to use mobility-assistive technologies such as wheelchairs, or scooters. Manual or power devices may be used as early as 18 months to two years.

An OT may recommend wheelchair positioning, bracing, and seating modifications to improve balance and posture for people with scoliosis (curvature of the spine). OTs can also help integrate respiratory equipment into a power-mobility device.

Leg braces, standing frames, canes, and walkers. OTs may work with people on using an array of mobility devices, including standers, walkers, and braces (orthoses). People who can bear weight and have trunk control may be prescribed a standing frame. Some standers can be adjusted to position children at eye level with their peers, which has psychosocial advantages.

Home modification. Occupational therapists can also advise on home modifications, such as installing a mechanical lift, resizing a bathroom door for wheelchair access, or removing a bathtub to create a level platform for mobile shower-chair access.

Adaptations at school. OTs work with schools to coordinate adaptations for children with SMA, such as access to elevators, preferential classroom seating, or wheelchair accessibilty.

Self-Care. Therapists can provide instruction on living with physical limitations, setting priorities, and developing an action plan for energy conservation and work simplification. Avoiding overuse of muscles is another strategy that is commonly shared; some research suggests that overloading or excessive mechanical stress may accelerate muscle cell deterioration.

Intended outcomes
The goal of occupational therapy is to help people find ways to live as normally as possible. This includes access to household and community activities, independence in self-care, use of adaptive equipment, and improved or maintained motor functioning.

Results
Studies suggest that some occupational treatments – such as stretching and positioning, as well as swimming pool exercises - may provide improvements in people with neuromuscular diseases.

Constraints
Excessive movement and standing may create fatigue and accelerate muscle cell degeneration.

Lack of insurance coverage or availability of therapists in certain areas may prevent people with SMA from receiving treatment. Many people fail to complete or follow up with therapists’ exercises and recommendations.

For more details, visit:
1. Physical/Occupational Therapy – Columbia University Spinal Muscular Atrophy Research Center
2. Facts About Spinal Muscular Atrophy - Muscular Dystrophy Association
3. Occupational Therapy for Patients with Neuromuscular Disorders 一 The Hong Kong Society of Neuromuscular Diseases
4. Spinal Muscular Atrophy 一 American Physical Therapy Association
5. Musculoskeletal System - CureSMA
6. Diagnosis and management of Duchenne muscular dystrophy 一 The Lancet Neurology
7. Referral of patients with neuromuscular disease to occupational therapy, physical therapy and speech therapy: Usual practice versus multidisciplinary advice - Disability and Rehabilitation