Wheelchairs, Seating, and Other Adaptive Equipment
- While you are walking, a mobility scooter or manual or electric wheelchair may be used for long distances to conserve your strength
- When you start needing to use a wheelchair for longer periods, it is important that you are using a chair that keeps your posture in proper alignment and provides good support for all parts of your body
- As difficulty with walking increases, it is recommended that a power wheelchair is provided sooner rather than later. Additionally, a power standing feature is recommended if available
- Physiotherapists and occupational therapists will be helpful in recommending assistive devices to help maintain your independence and promote safety
- It is best to think ahead about the kind of equipment that will continue to support your independence and participation in activities you enjoy and to plan accordingly
Box 4. Pain Management
It is important to let your NMS know if pain is a problem so that it can be addressed and treated properly. This should be reviewed at every neuromuscular visit. Unfortunately, very little is currently known about pain in Duchenne. More research is needed. If you are in pain, you need to talk to your NMS and explain that this is a problem.
- For effective pain management, it is important to determine why there is pain so your neuromuscular team can provide appropriate interventions
- Pain may result from problems with posture and difficulty getting comfortable. Interventions may include appropriate and individualized orthoses (braces), seating, bedding, and mobility as well as standard drug treatment approaches (e.g. muscle relaxants, anti-inflammatory medications). Interactions with other medications (e.g. steroids and non-steroidal anti-inflammatory drugs [NSAIDs]) and associated side effects, especially those that might affect cardiac or respiratory function, should be considered
- Rarely, orthopedic surgical intervention might be indicated for pain that cannot be managed in any other way. Back pain, especially in people using steroids, may be a sign of vertebral compression fractures, which respond well to bisphosphonate treatment
- Narcotic pain medication should be used with extreme caution, expecialy if there is pulmonary dysfunction. Narcotics can cause more shallow breathing or may cause breathing to stop
- You may need additional adaptations to help with getting upstairs and transferring, eating and drinking, turning in bed, toileting and bathing
- Simple devices such as elevated lap trays and adaptive straws can optimise function
- Advanced technologies such as robotics, Bluetooth, and infrared environmental controls may be helpful. Advanced Assistive Computer Technologies such as Tecla Home Automation devices and Dragon Naturally Speaking, and voice-recognition devices such as Google Home and Amazon Echo can help to control your environment and assist with daily tasks
It is very important that you do everything, inside and outside your home, to stay safe. In figure 9 are some suggestions to help you to avoid accidents and potential broken bones.