How can I maintain balance and prevent falls, especially on toilet seats, given my Duchenne muscular dystrophy (DMD) and muscle weakness?

Balance and Fall Prevention in Duchenne Muscular Dystrophy

Install grab bars, raised toilet seats with armrests, and consider a commode chair immediately—these adaptive devices are essential safety interventions that prevent falls and maintain independence for wheelchair-bound DMD patients with severe muscle weakness. 1, 2

Immediate Environmental Modifications

Bathroom Safety Equipment:

• Install grab bars on both sides of the toilet to provide stable support points for transfers and balance maintenance 2
• Use a raised toilet seat with integrated armrests (adds 3-6 inches of height, reducing the distance you need to lower/raise yourself) 2
• Consider a bedside commode or over-toilet commode frame with armrests if transfers remain unsafe despite other modifications 2
• Ensure the bathroom floor has non-slip surfaces or mats to prevent sliding during transfers 2

Transfer Equipment:

• A sliding board (transfer board) can bridge the gap between wheelchair and toilet, reducing the balance demands during transfers 1, 2
• Mechanical hoists or ceiling-mounted lifts should be considered if upper body strength is insufficient for safe transfers, even with grab bars 1

Wheelchair Seating Optimization

Your wheelchair configuration directly impacts your ability to perform transfers safely:

• Ensure your wheelchair has removable or swing-away armrests to allow closer positioning to the toilet 2
• Wheelchair height should be matched to toilet height (with raised seat) to minimize the vertical distance during transfers 2
• Consider a wheelchair with elevating leg rests that can be moved out of the way during transfers 2
• Proper wheelchair positioning (as close as possible, at appropriate angle) reduces the balance challenge during the transfer 2

Multidisciplinary Assessment Required

Physical and occupational therapy evaluation every 4 months is recommended to reassess your transfer techniques and equipment needs as your strength changes 3

Key assessments should include:

• Evaluation of current transfer technique to identify unsafe compensatory movements 1, 2
• Assessment of upper extremity strength (critical for using grab bars and armrests) 2
• Measurement of trunk control and sitting balance 2
• Review of home bathroom layout and accessibility 1

Ongoing Medical Management to Preserve Function

Continue glucocorticoid therapy (prednisone 0.75 mg/kg/day or deflazacort 0.9 mg/kg/day) even after loss of ambulation to slow further muscle deterioration and maintain upper body strength needed for transfers 3, 4

Maintain regular clinic appointments every 6 months to monitor progression and adjust supportive interventions 3

Critical Safety Considerations

Common pitfalls to avoid:

• Attempting transfers without adequate support equipment puts you at high risk for falls and fractures (DMD patients have significant osteopenia from disease and steroid use) 5
• Delaying equipment installation until after a fall occurs—proactive installation prevents the first fall 2
• Using equipment not specifically designed for your weight and strength level 2

The muscle you're concerned about preserving is already severely compromised by DMD pathology—no amount of "practice" or repeated transfers will strengthen it, but proper equipment will compensate for the weakness and keep you safe 1, 6