If you have muscular dystrophy (MD), take heart. There’s a wide variety of assistive devices to help you live more independently and comfortably. What’s more, innovative technology is radically changing the lives of people living with MD and other neuromuscular disease.
As MD is a progressive illness, your need for assistive devices will change over time. This is why it’s important to get expert advice from an occupational therapist (OT) or a physical therapist in your health-care team. They’ll be able to assess your specific needs and situation, and recommend the most appropriate aids to enhance your independence and make your life easier and safer.
Since there are so many assistive devices available, this article will only outline the most common ones. These include:
• Orthopaedic devices
• Mobility devices
• Other devices to aid everyday living activities
• Assistive technology
Remember to ask your physical therapist or occupational therapist for advice and recommendations on the most suitable devices to meet your needs.
Many neuromuscular disorders such as MD result in weakened muscles and joints, so you may find it helpful to use an orthosis, a special body-support device. Orthoses are useful because they enhance comfort, support the joints when muscles weaken in certain positions, prevent contractures and enhance joint, spine and limb movement.
Some of the most common ones include:
• An ankle-foot orthosis (also called an AFO) is a simple plastic splint worn under pants or trousers. It aids walking and prevents stumbling or tripping. This occurs when muscles supporting the ankle joints become weak, making it difficult to pick up the foot and walk properly.
• If you’re struggling to grasp eating utensils and other small objects, a hand and wrist support is a good option. This is available in different forms, including a wrist and thumb splint to facilitate grasping and additional support to position the fingers and make it easier to perform fine motor movements such as writing. The familiar universal cuff straps over the hand to support weakened hand muscles, making it easier to grasp small items and objects such as hairbrushes and cutlery.
• Neck and shoulder supports such as slings can lessen pressure on arm ligaments and muscles that weaken over time together with shoulder muscles. A cervical collar helps to support the head if neck muscles get weaker.
• Power scooters: These mobility devices are available in front-wheel or rear-wheel drive versions and maximise functional independence. While they’re fairly lightweight and you can disassemble and transfer them in your car, you need good upper body strength to drive them.
• Canes and walkers: These devices can enhance your mobility and reduce fatigue, a common problem in MD. If your one leg is stronger than the other, you might find a cane useful when walking, while a walker provides more overall support and stability.
• Wheelchairs: There are two types of wheelchairs, manual and power, each with their own features and benefits. Many people with MD and other neuromuscular disorders use wheelchairs to enhance mobility. They’re especially useful for people who often stumble and fall, get fatigued when they walk or avoid outings for fear of injury. But don’t just buy any wheelchair – ask an OT to do a comprehensive professional assessment first to find the most suitable one for you.
If you’re able to position yourself easily in a wheelchair and are stable in your upper body, a manual wheelchair is a good option. It’s light and usually collapsible to fit easily into your car.
In the later stages of MD, power wheelchairs are most suitable if you’re unable to manually propel yourself forward. These chairs are usually custom designed for a specific user to ensure they’re easy to manage. A power wheelchair utilises a joystick or other device that you can control easily, using almost any body part you can move. Although they’re more expensive than conventional wheelchairs, power wheelchairs offer far greater independence and mobility, especially in outdoor settings. You’ll need a special car ramp for a power wheelchair as it’s not collapsible.
• The popular ASL mini-proportional joystick is an example of how modern technology is improving the quality of life for people with limited mobility. You can operate this thimble-sized device with a feather-light touch, even if you have little strength or limited movement.
Equipment for activities of daily living (ADL)
From button hooks and oversized cutlery to innovative beds and car-door openers, there’s a long list of simple assistive devices to help you preserve the ability to perform daily tasks. Apart from low- or high-tech electronic devices, many commonly used items have been cleverly modified so you can cope with self-care, household and occupational tasks more easily.
Your OT will help you deal with your illness as it progresses by recommending assistive devices so that you can remain independent, mobile and functional. They will also show you how to adapt your home or work environment as your needs change.
Here are just a few of the assistive devices to help people with MD cope with increasing muscle weakness and fatigue:
Adaptive devices focus on using unaffected or stronger muscles to perform daily tasks more efficiently. These include:
• Customised cutlery and dinnerware with oversized handles to grasp more easily and utensils with an angled head that reduce the dexterity needed to bring food to the mouth.
• Pens or pencils with an enlarged triangular grip or cylindrical foam to position the fingers and lessen the strength needed for legible writing.
• Doorknob adaptors and key holders to provide additional leverage for opening doors or turning keys in a lock.
• Car door openers with strong plastic handles that use leverage and grip instead of finger dexterity.
• Button hooks and zip pullers to make it easier to get dressed.
Home and work modifications include:
• Wheelchair or pedestrian ramps
• Widened doorways and wall hand rails
• Bathtub seats, walk-in showers and bathroom lifting equipment to facilitate bathing and showering
• Innovative beds and mattresses designed for people with limited mobility or who cannot change their positions while sleeping, an important issue to prevent pressure sores. While modified beds can be expensive, you can sometimes rent them. Check with your doctor or therapists whether your health insurance will cover this equipment if they give you a prescription or letter stating that it’s medically necessary.
Ergonomic devices (e.g. arm rests, computer arm supports and an easy-touch or hands-free mouse) will allow you to continue working and be productive at home if you’re experiencing severe weakness in your arms.
Communication: Apart from exciting technological devices, people with MD can also benefit from numerous modifications and accessories for telephones that make communication easier. These include voice-activated systems, hands-free headsets and large button adaptors for easier dialling.
Assistive technologies and MD
Technology, says Steve Spohn, an expert in gaming with assistive technologies and disabilities is inescapable, and for many people with progressive muscle weakness it keeps them alive.
In a recent online article on the MDA website, Spohn, who has spinal muscular atrophy, says that while different neuromuscular diseases like MD progress at different rates, eventually those with the disease all start losing mobility, strength and/or dexterity. The upside is that assistance technology “allows increased freedom, improved quality of life and furthers independence”. While new technologies are often expensive, Spohn highlights a few technologies that will improve your life if you have MD, but which won’t break the bank.
• If you have mobility and some hand strength, the Apple iPad offers a host of apps to enable multitasking and adapt the device to your specific abilities. For example, if you find it physically difficult to hold a book, you can upload books to an iPad. An Amazon Kindle is another option. These devices can also be mounted onto wheelchairs.
• The Ubiquitous Computer (Ubi), described as “the ultimate in security and independence” for people with restricted mobility, is a voice-activated computer assistant. Similar to the ones your find on newer smart phones, the plug-in Ubi device accesses the Internet via Wi-Fi. At the sound of your voice, you can control the lights, phone, TV and thermostat without pressing a button.
• With the unlimited range of assistive PC technologies available to maximise your personal computer, you need never worry about not being able to communicate. Dragon NaturallySpeaking-12 voice recognition software enables the user to speak into a microphone and control a PC without lifting a finger. With voice recognition integrated into many cars and devices, Dragon is now capable of up to 99% accuracy.
• Available soon is Google’s Project Glass computer eyeglasses. They have an overlay imbedded in the glass lenses themselves that looks identical to your smart phone. If you have weakness in your arms, hands and fingers, you’ll be able to “wear” your smart phone and operate it by speaking, instead of fiddling with small buttons on a hand-held device. Voice command will enable you to perform a multitude of functions such as browsing the internet, taking pictures and calling friends.
1) MDA Online article: Spohn, S, “Assistive Technologies.” Link: Quest Vol. 20, No. 2
2) Muscular Dystrophy Canada: Website link: http://muscle.ca/living-with-muscular-dystrophy/mobility/
3) Muscular Dystrophy: Queensland (Australia) Website: Carehttp://mdqld.org.au/neuromuscular-condition/care/
4) Muscular Dystrophy America (MDA): Website link: http://mda.org/publications