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Commentary on “Supported Standing in Boys With Duchenne Muscular Dystrophy”

Case, Laura E. PT, DPT, MS, PCS; Coats, Julie MPT; Draper, Ryan M. Individual with DMD

doi: 10.1097/PEP.0000000000000286
CLINICAL BOTTOM LINE
Free
SDC

Duke University Durham, North Carolina

Durham, North Carolina

The authors declare no conflicts of interest.

“How might I apply this information?”

Results of this study support the use of motorized stand-and-drive wheelchairs for individuals with Duchenne muscular dystrophy (DMD). Supported standing has long been advocated for DMD, with knee-ankle-foot orthoses (KAFOs), standers, and stand-and-drive wheelchairs1–10 used to prevent/minimize contractures that accelerate with walking cessation.11–19 Muscle length benefits reported here suggest the need for earlier initiation and increased dosing within a context of comprehensive management for even more robust effects. At baseline, all participants had impaired muscle length at hips, knees, and ankles; 3 were non-ambulatory; and none participated in daily stretching or had ankle foot orthoses (AFOs) except post-operatively. Nonetheless, muscle length improved in 3 of 4 participants.

Individual comments: I'm 33 years old, have DMD, and have used supported standing since I was 9 years old. I used KAFOs from ages 9 to 15. Between 9 and 10, I used KAFOs for stretching but could still walk without them. Stretching with KAFOs made walking easier afterwards. I used a motorized chair for long distances. I began using a hydraulic stander when I was 13 to stretch my hips. Between 13 and 15, I walked with KAFOs and used the stander. From 15 to 20, I used a stander and motorized wheelchair. I got my first stand-and-drive chair when they became available, at age 20. This chair was safer because it didn't require transfers to stand. I've continued to use stand-and-drive chairs since then, and still stand daily. I've used AFOs and daily stretches since I was small, and have always had regular physical therapy (PT). My knees and ankles are straight, with straight leg raising to 90.

“What might I be mindful of when applying this information?”

For optimal benefit, stand-and-drive motorized wheelchairs in DMD should be used within the context of comprehensive PT programs7–9 that include daily stretching, stretching AFOs,20,21 support of submaximal active movement, and earlier, preventative implementation of supported standing prior to contracture development.

Individual comments: As an individual with DMD, I'm glad research is being done and I think the study recommendations are reasonable. But, I feel that standing should have started earlier, and been longer, with more research examining the combination of supported standing, PT, stretching and AFOs. This combination has worked best for me.

Laura E. Case, PT, DPT, MS, PCS

Julie Coats, MPT

Duke University

Durham, North Carolina

Ryan M. Draper

Individual with DMD

Durham, North Carolina

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