Living with a neuromuscular condition may mean that you need to use equipment or assistive technology to enable you to do the activities you need or want to do in your daily life. In this section, you will find information about the common types of equipment that may be used by people with neuromuscular conditions, who can help you get the right equipment and where to go for more information.
How equipment and assistive technology can help
Assistive technology is the overarching term used for all equipment that you use in your daily life to maximise function, be as independent as possible and mobilise safely at home and in the community. It includes customised, complex, standard and off the shelf items.
A neuromuscular condition can make your normal daily tasks and activities difficult. You might use equipment and assistive technology for short periods, such as after surgery, to enable you to complete a particular activity, or long-term if you experience a change or decline in your abilities.
Equipment and assistive technology can be useful for everyday activities such as:
- Looking after yourself, for example, showering, dressing and transferring
- Participation in daily tasks and routines such as preparing food, tying shoelaces, doing up buttons
- Education, to help you attend and participate fully in childcare, school and university
- Work, both paid and unpaid
- Caring for others
- Getting around your home and community
- Participating in your usual hobbies, interests and social events.
Types of equipment
Types of equipment include:
- Mobility aids
- Pressure reduction and positioning
- Personal care and daily living aids
- Splints
- Seating and postural supports
- Health and medical aids
- Communication aids
- Technology and environmental access
- Minor home modifications
- Transport
- Recreation and sports
- Off the shelf products
Mobility aids
Mobility aids should be chosen in consultation with your physiotherapist or occupational therapist. Manual wheelchairs, electric scooters and power wheelchairs need to be trialled and scripted to your individual requirements. Ideally, any mobility aid should be trialled in your home environment, or where you intend to use them most, to ensure that there is enough access and space for you to use the equipment safely.
It is also important to discuss transport options when considering manual and power wheelchairs:
- Is there enough room in the boot of your car for a manual wheelchair?
- Can you or your carer easily lift the chair into the car?
- Do you need a car hoist?
- If you have a modified vehicle, is there adequate head height clearance?
Mobility aids include:
Walking sticks and crutches
Walkers
- Some people with neuromuscular conditions have upper limb weakness and do not have the strength in their arms to use walkers)
Manual wheelchairs
- Most off the shelf chairs have a slung seat and back support made from fabric. You may need more support on your manual wheelchair than this so work with your therapist to determine the best chair for you.
- There are many factors that need to be considered when determining the frame type for a manual wheelchair including transport, intended use, the ability of the user to self-propel, growth of the chair (children), and customisation.
- Manual wheelchairs have either a folding frame or a rigid frame. There are pros and cons for both types which your therapist and equipment supplier will discuss with you. A folding frame chair has a crossbar, removable leg rests and fold-up footplates. They can fit easily into the boot of most cars. Rigid frames have less moving parts and are sturdier, and often lighter and easier to self-propel. The leg rests and footplates are fixed.
- Other factors to consider include pneumatic versus solid tyres, size of front castors, seating requirements, ability to self propel, the weight of the chair, swing-away versus fixed footplates, seat angle, armrests
- For many people with neuromuscular conditions, it is difficult to self-propel a manual wheelchair and for some conditions (eg. children with Duchenne Muscular Dystrophy) self-propelling is not recommended.
Power wheelchairs
- There are many power wheelchairs on the market and it is important to work closely with your therapist to ensure that you get a chair that suits your requirements, including consideration of intended use, power functions, seating and postural supports and accessories/ modifications.
- There are specific power functions of the wheelchair – tilt, elevate, recline, elevating leg rests - as well as the mechanical components of the chair - lateral supports, backrest options, headrest, harness, seat belt, cushion, calf supports, armrest modifications. Together they ensure that you attain the optimal seating, postural control and support that you need.
- Power features such as tilt and elevation increase functional independence. Tilt is needed to adjust the chair position when driving up and down slopes. It also aids in pressure reduction and decreases the effect of gravity through the spine. Elevate allows the user to see things on high shelves and to engage in conversations with people at eye level rather than always having to look up at people and/ or be excluded from conversations happening around them. Recline allows for easy positioning of a sling for hoisting.
- The combined power features, tilt, recline and elevating leg rests, allow the user to fully rest in the chair, which increases comfort and reduces the need to transfer out of the chair through the day to rest. Active reach is a powerful feature that provides an anterior tilt to the chair and improves your ability to reach objects in front of you. Other factors to consider include orientation of the pelvis on the cushion, backrest type, harnesses, lateral supports, lumbar support, headrest, armrest height, thigh guides, footplate adjustability, control box and position of the joystick. [1]
- You can learn more about seating for power wheelchairs in Chapter 6 of Wheelchair Provision for Children and Adults with Muscular Dystrophy and other Neuromuscular Conditions Best Practice Guidelines from Muscular Dystrophy UK.
Standing power wheelchairs
- These are high cost and specifically designed for individual use. They include all of the power features listed above, plus have an additional standing function to bring you to the upright position. From this standing position, you are able to drive the chair on level flat ground at reduced speed.
- Standing wheelchairs must be prescribed early, prior to the development of contractures and for best results, the standing function needs to be integrated into everyday life.
Power assist add ons to manual wheelchair
- You first need to check that your manual wheelchair can support the use of these items:
- Smart drives - a power-assist device that easily attaches to your manual wheelchair, so that you and your wheelchair can travel over almost any surface. [2]
- E-motion wheel - “The e-motion combines active mobility with therapeutic benefit. Wheelchair users with limited arm and body strength can gain back mobility with e-motion. The electric motors that are integrated into the wheel hubs so every pulse on the push rim is registered by a highly sensitive sensor and translated into the perfect amount of electric power assistance”. [3]
- Firefly - an electric power add-on that attaches to the front of most rigid frame wheelchairs and even some folding models of manual wheelchairs. It turns your manual wheelchair into an ‘electric scooter’. [4]
Electric scooters
- Considerations for children:
- Feet must be supported, provide a built-up foot block if feet do not touch the base of the scooter. They should not be left to dangle.
- Armrests must be provided and be the correct height so the child does not lean to either side.
Portable power wheelchairs
- These may be used for transport over distances. There is little adjustability to a portable power chair in terms of seating and postural supports.
Specialised accessories for power wheelchairs
- Such as attendant controller, one-click activators (buttons to control the power function, rather than control through the joystick)
Accessories for wheelchairs
- Trays, mobile phone holders, tablet holders, umbrella holders
Specialised stroller for children
Pressure reduction and positioning
Pressure reduction cushion for manual and power wheelchairs, which are categorised by:
- Material - foam, air, gel, combination cushions.
- Pressure reduction capability – low, medium, high
- Height: low, medium or high profile,
- Shape: flat, contoured, wedged
- There are many types of cushion on the market. It is important to trial cushions before making a decision.
Pressure reduction mattresses
- There are many different types of mattresses (eg air, static or alternating, gel, foam, combinations), and they depend on your pressure care needs and personal preferences
Sleep systems
- Some people require sleep systems in order to be positioned in bed correctly for comfort, pressure care and breathing. They are more commonly used in paediatrics.
Personal care and daily living aids
Examples include:
Height-adjustable power bed
- There are options regarding size of bed and they don’t all have to look like a hospital bed. The size will depend on your size as well as your rolling ability.
- Beds can be customised to ensure that the knee break is in the correct position for your height and weight.
- A companion bed can also be supplied.
Shower chair or commode
- Shower chairs are off the shelf items and basic, They have no wheels and no postural supports.
- Commodes may be off the shelf or custom made with features including tilt, postural supports, cushioned seat and head rests.
- Other options include benches, shower beds and bath lifts (usually paediatrics).
Specialist postural chair
- These are customised to your postural support needs.
Electric lift chair
- These are usually off the shelf and recommended for people who do not require a lot of pressure relief but need assistance with sit to stand.
Electric hoists
- Options for hoists include folding hoists, floor hoists and ceiling hoists.
- Please consult your occupational therapist regarding frame type, sling size, sling-type and discussion regarding the best hoist for you and your environment.
Splints
Splints can be static, such as solid ankle-foot orthotics, or dynamic with hinges that allow for some movement. You will need a referral to an orthotist for some lower limb splints. An occupational therapist will be able to assist you with hand splints. Podiatrists or orthotists will provide in-shoe orthotics.
Examples of splints include:
- Ankle Foot Orthoses (AFOs)
- In-shoe orthotics
- Walking splints such as leaf spring AFOs, supramalleolar orthoses
- Hand splints
- Second-skin- custom made medical compression garments and splints, that control tone and improve stability and function.
Seating and postural supports
Options include:
- Customised seating for power wheelchairs and manual wheelchairs. For more information see Chapter 6 in Wheelchair Provision for Children and Adults with Muscular Dystrophy and other Neuromuscular Conditions Best Practice Guidelines from Muscular Dystrophy UK
- Posture chairs for children
- Standers - supine, prone, or upright.
Health and medical aids
Examples include:
- Cough assist machine
- Intrapulmonary Percussive Ventilator (IPV)
- Suction machines
- Night-time ventilation support – BIPAP machines and other night time ventilation support
- Day time ventilators
- Ambu Bag
Communication aids
Including:
- Voice recognition software
- Voice to text and other communication software programs
- Typing programs
- Augmentative and Alternative Communication (AAC) such as speech generating devices.
Technology and environmental access
Examples include:
- Environmental controls using blue tooth and infrared technology. These can be set up through the controller of your power wheelchair and operated through the joystick.
- Mini joysticks – touch-sensitive joysticks indicated for use with marked muscle weakness, limited hand function and fatigue.
Minor home modifications
Including:
- Ramps
- Rails
- Stair lifts
- Pool hoists
Transport
Options include:
- Wheelchair accessible vehicles
- Car hoists
- Ramps
- Strikeforce power wheelchair for soccer
- Modified bikes and tricycles
Recreation and sports
- Modified sporting equipment such as boccia balls.
Off the shelf products
- These are often low-cost items and can be purchased through your CORE supports in your NDIS plan (if you have one)
Where to get advice about using equipment and assistive technology
Allied health professionals, such as occupational therapists and physiotherapists, can give you advice to ensure the equipment will meet your individual needs.
If you have an NDIS plan you can discuss your needs for assistive technology and equipment in your planning meeting. The National Disability Insurance Agency may fund assessments and reports to be completed by an allied health professional in your NDIS plan. The NDIS website has further information about NDIS and assistive technology.
NDIS classifies assistive technology into 4 categories - Level 1, 2, 3 and 4 - depending on complexity level, customisation and risk.
If you are over 65 years of age, funding for assistive technology may be provided under My Aged Care.
Useful resources
- LifeTec Australia YouTube videos: These videos cover many topics such as using smart speakers and home assistants, powered mobility options, gardening and bathroom modifications.
- Wheelchair considerations for boys with Duchenne Muscular Dystrophy-Information for families and therapists, The Royal Children’s Hospital Melbourne
- A brief glimpse into purchasing a wheelchair accessible vehicle, Muscular Dystrophy New South Wales
- A-Z guide on Disability Converted Cars, Blue Badge Insurance
- Getting funding for your disability converted car, Blue Badge Insurance
- The following resources are from Muscular Dystrophy UK. Although written for the United Kingdom most of the information is transferrable to Australia: