Adults Living with SMA, Equipment
Adults Living with SMA, Equipment
Page last reviewed: July 2024
Last update added: September 2024
Walking equipment
You may need walking equipment to help you with:
- your stability and balance.
- maintaining an upright body posture.
- confidence in your walking ability.
- interacting with family and friends.
- keeping your muscles as strong and supple as possible.
- preventing contractures. These happen when there is a permanent tightening of the muscles, tendons, and skin. Contractures also affect nearby tissues and cause the joints to shorten and become very stiff.
- keeping your bladder and bowel working well.
Your OT or physio should provide suitable equipment. For example, some people find it helpful to have lower limb splints (sometimes called orthoses). These can help maintain flexibility, posture and function at the ankle and knee. Some people use a walking frame to get around.
Standing Equipment
If you are unable to walk, it is still important to maintain activities like supported standing for as long as possible. Standing is good for many things including posture and range of motion, preventing contractures, breathing, blood circulation, bladder, bowels, bones and joints.
Your physio or OT will provide equipment to support your standing and positioning; this may include a standing frame. They will tell you how often, when and where you should use any equipment.
The right seating is really important for your comfort and posture whether you are at home, at work, studying or out and about.
If you are a full-time wheelchair user, your wheelchair seat is very important. The key elements are:
- a firm base cushion which will encourage a level pelvis
- a firm back support which will encourage an erect posture
- arm rests at the correct height
- foot rests at the correct level so there is a 90 degree angle at the hips, knees and feet.
If the seating in your chair is no longer comfortable or supportive, contact your physio or OT about a re-assessment. If you do not have a physio or OT, ask your neuromuscular consultant or GP for a referral. You may also be referred to Wheelchair Services for a review. You can find related information in the section: Powered Mobility tab below.
If you are not a full-time wheelchair user, it is still important that you get expert advice about any seating needs you have at home and work. This includes making sure that any wheelchair you use part-time is suitable for you (see the Mobility section tab below).
If you are not being seen regularly by an OT or physio or neuromuscular consultant, ask your GP for a referral to one to assess your needs at home. If your seating at work is causing you discomfort or affecting your posture, talk to the manager responsible for your health and safety at work. If you have not already had an assessment you may be eligible to ask for one. See the section on Access to Work on this page under the Study, Work & Volunteering tab.
Options for people who can stand and walk
Riser Recliner Chairs
If you need to sit in a chair for any length of time, a riser recliner chair can be useful. This enables you to change position by reclining the back and / or lifting your legs. To help you get up and out of the chair, usually the seat tips forward as well as rising. This can be unsafe for people with muscle weakness in their legs, so you may need to consider a riser recliner which can be set to rise straight up without tipping. Ideally, any chair you are thinking about should be trialled before it is bought to make sure it is both comfortable and safe to use.
Living made easy – gives an idea of the range of different models – tick the boxes on the left hand side that apply to you. Your OT can advise on what features are right for you.
Perching Stools
These can be helpful in the kitchen or bathroom for short-term use to simply rest while carrying out a personal care or domestic task. The seat is angled forwards and the overall height of the stool can be adjusted as required to enable the user to reach a sink or worktop for example.
Living Made Easy – gives different options and ideas to discuss with your OT / physio.
Funding
If you are assessed as needing it, your OT should be able to supply some specialist seating for home use free via the NHS or the Local Authority.
If you fulfill the eligibility criteria, seating needs for work may be funded via Access to Work – see this page under the Study, Work & Volunteering tab.
If you want to apply for help to buy additional or specialist seating, Support Services at SMA UK can suggest charities that may provide a grant. Most charities will not fund anything you have already bought. It is important not to place an order or pay any deposit until all your funding is ready or pledged. For more information see: Funding for Equipment tab below.
The health authority is responsible for providing equipment for medical needs, including wheelchairs. How WS are organised and what they will fund varies from region to region; many have a waiting list.
This section looks at a variety of options, not all of which will be right for you, but it will hopefully give you some ideas about what is available to assist with your mobility.
If Wheelchair Services cannot provide the powerchair you need, how do you go about selecting the right one for you and getting help with funding?
For some people, mobility scooters and buggies may be a good way to enable you to remain independent. It is advisable though to consult an OT or physio to decide if one is suitable and safe for you. If it is, you need to consider which scooter best suits your requirements and also which retailer to buy from.
Living Made Easy – information on mobility scooters that may be helpful when discussing this option with your OT.
Research Institute for Disabled Consumers (RiDC) – information on mobility scooters.
Insurance
Generally speaking, you do not need insurance for a mobility scooter although it is strongly recommended given the cost and the possibilities – not just for loss or damage, but also for any damage that could be caused to other people, or other people’s property. When you are setting up your insurance, check what is covered.
If you already have a home contents insurance policy, you may find that you can add on some mobility equipment. However, it is not usually easy to add on a powered wheelchair.
If you plan to travel outside the UK with your mobility equipment, please speak to your insurance company to see if you need additional insurance.
There are many insurers available, but if you would like any support with finding insurance, contact our Support and Outreach Team to help.
Further guides and information
If the muscle weakness caused by your SMA means the current set up you have in your bathroom is not working for you, you may need some equipment to help.
Washing and using the toilet
If you already have an occupational therapist (OT), they will be the best person to talk to. They can sort out equipment so that doing these things is as easy and stress-free as possible for you and anyone else who helps you with your personal care. If you do not have an OT, contact your GP or neuromuscular consultant and ask for a referral. Or you can self-refer to your local authority Occupational Therapy service for an assessment of your equipment needs at home.
There is a wide variety of equipment and new products coming onto the market all the time. These include:
- Using the bath: bath chairs, lifts, cushions, inserts and portable baths
- Showering: multi-function shower / toileting / commode chairs, mobile and wall-mounted shower cradles / benches and shower stools
- Using the loo: toilet seats, cushions, frames and rails, urine deflectors, travel urinals, wash and dry facilities.
Living Made Easy – choose the top tab: Health and Personal Care and then Bathing & Toileting. It may be helpful to have an idea of what is available for any discussions you have with your OT / physio.
Your OT should be able to advise what would work best for you. They should be able to provide most items of equipment and / or tell you how to get assistance to pay for them. SMA UK may also be able to help with funding suggestions. See: Funding for Equipment tab below.
Managing days out
Days out and travelling away from home can bring extra challenges.
Changing Places toilets provide a height adjustable changing bench with a hoist and plenty of space. Visit their website for more information and a map of where Changing Places can be found.
The National Key Scheme for accessible toilets that can be found in shopping centres, cafes, department stores and in bus and train stations around the country. To unlock the toilets, you’ll need to buy a RADAR key.
Clothing
You may find that it is easier if you have clothing that fits easily over your head, legs and arms. You may also find it hard to get comfortable footwear. If you are a wheelchair user, you may want something that fits over both you and your wheelchair when you are going out.
If you are looking for practical options, adults / families have recommended these suppliers for adapted clothing and footwear:
- Rackety’s
- Able2Wear
- Friendly Shoes
- BILLY Footwear:
- click here for a UK supplier;
- click here for the original US supplier.
If you are having difficulty keeping your feet warm, in November 2023 some people in our Families’ WhatsApp Network recommended looking at the shop at:
The muscle weakness caused by your SMA may mean that you need a specialist bed and / or mattress to keep you comfortable and safe at night. An example is an electric profiling bed that is divided into sections. This allows areas of the bed to be positioned at different heights and angles, depending on what is needed for posture and comfort. Some people use a profiling bed which can be programmed to offer ‘side tilt’ during the night. This may mean that they do not need a carer to turn them. There are also devices available which can be fitted to standard profiling beds which assist carers to turn someone in a safe manner.
Mattresses need to be compatible with the bed and different ones suit different preferences and needs. Some people use memory foam mattresses. Others are assessed as needing electric pressure-relieving mattresses. These give some change of movement (and pressure areas) throughout the night.
Some people also find a sleep system (which uses wedges and rolls to support the body) helpful. Your OT (occupational therapist) can advise you what is available and what may best suit your needs. If you do not have an OT, you can ask your GP to make a referral.
Living Made Easy / Profiling Beds are specialist ones you might discuss with your OT – you need to tick the boxes on the left hand side of the website page for what is appropriate for you.
Some people find it useful to buy a portable electric pressure relieving mattress to take on holiday or for when they stay away from home. These however, cannot be funded via the NHS or Local Authority.
If you need to be moved or turned at night to keep comfortable, having satin
or cotton ‘slide’ sheets on top of the mattress can make it easier for whoever is helping you. Alternatively, there are products available such as Wendylett sheets and other devices which can be attached to a hoist, which can assist in turning you safely and comfortably.
Funding For Single & Double Profiling Beds
Generally, if you have a health or medical need, there should be no issue with a suitable single profiling bed being supplied by the NHS. This is via a district nurse. It may not be so straightforward if you need a double one.
If you need a double bed, ask your district nurse if this could be funded. Make sure to get supporting letters or information from your OT, physio or social worker.
If you get turned down, talk with your district nurse about the reasons. You may at this stage want to work with them to apply for funding.
The reasons for being refused at either point may be because positioning of a double profiling bed will compromise moving you safely – for you and / or your PA (Personal Assistant). It is hard to argue with that one.
If safety will not be compromised, some options you might propose are:
- Seeing if a ‘twin’ single can be attached to the offered single to effectively make a double. If it can, propose that the NHS supplies the single and you fund the twin (see below for help with this)
- If a twin is not possible, propose that the NHS part funds to the value of a single bed that they would be prepared to supply. Then, with the support of your OT / physio / district nurse, look at what suitable options you can find. Ask them for a supporting letter to confirm that the bed you have chosen will work for you and is safe for both you and any PA.
See: Funding for Equipment tab below
Beds are very personal and ideally you will want to try before you buy. If the supplier will not allow this, make sure you have an assurance that it can be returned if it is ‘not suitable’. Establish what reasons they understand would make it ‘not suitable’ and that you agree these are reasonable.
If transferring has become difficult or unsafe you may be thinking about getting a hoist. Some adults have said that they resisted using one for as long as possible, wanting to maintain their independence and because they saw it as extra equipment and extra hassle. However, if you have been assessed as needing to use a hoist when transferring, it will be to do with your safety and the safety of your partner / personal assistant(s).
There is a huge range:
- Computer software and hardware, such as voice recognition programmes and screen readers.
- Adaptive switches for computer gaming
- Communication aids, for example, an ‘eye-tracking’ device to operate a computer (see below).
- Environmental control systems
In this video, Julian Fiorentini talks with Emma Vogelmann about getting his home set up and other useful tips:
In the Community Voice ‘Useful Home Tech‘, Julian talks about how readily-available, everyday technology can make a big difference and make life easier at home:
"Apart from a wheelchair, probably the thing I use the most around my house is my network of Intelligent Personal Assistants such as Amazon Alexa or Google Home devices."
Communication aids
Eye gaze
This is a way of accessing your computer or communication aid using a mouse. The system follows your eyes to see where you are looking on the screen. You can then select the item you are looking at by ‘dwelling’ or staring at the screen for a length of time, blinking or clicking with a switch.
Eye gaze systems work by having lights and cameras that are constantly sending and receiving information. The camera picks up light reflections from your pupils and translates the movement of your eyes into mouse cursor movements. They are ideal systems for anyone who has limited hand and arm movement and / or communication difficulties that make it difficult to operate a computer otherwise.
You may want to consider an assessment by a specialist in Assistive Technology. If an item cannot be funded by the health or local authority but your OT or other specialist can confirm it is suitable and beneficial for you, you may be able to get help with funding.
Environmental control systems (ECS)
These can be built into smartphones, laptops and wheelchair control pads. They can include control of:
- lights
- heating
- electric profiling beds (if the existing controls are difficult to use)
- computers
- door openers
- telephones
- television
- radio.
Often an ECS can be controlled by only the smallest movement. It can also be set up for you to call for help.
Your Local Authority and community OT can advise you. They will usually involve an Electronic Assistive Technology (EAT) Service provider with in-depth knowledge of latest developments. Between them they will advise what funding might be available and how to apply. An ECS may be included in an application for a Disabled Facilities Grant – see the DFG section on this page.
Muscular Dystrophy UK’s Adaptations Manual looks at Environmental Controls in more depth
These providers offer a wide range of products and services:
- Abilia
- ACE Centre
- Communication Matters
- Contact Charity’s shop Fledglings Tech & Gaming – AAC Devices / Switches for all ages
- Eyegaze Systems (LC Technologies)
- Inclusive Technology
- Sensory Guru
- Smartbox Assistive Technology
- Tobii Dynavox
Specialist computers and gaming equipment
- AbilityNet – advice and training on computer technology for disabled people
- Everyone Can – helps disabled people to make the best use of information and communication technology by providing information and support on all aspects of disability computing
- Special Effect – adapted gaming controls
Funding
A lot of the equipment that might be helpful day-to-day is mentioned in the other equipment sections. There are though many other items and accessories, sometimes small, which can also make a difference at home and work, including for example:
- Automatic page turners, book holders and adapted pencil grips
- Ramps and grab rails
- Specialised handles and grips to help with eating and reaching
Talk to your OT (occupational therapist) or physio about what help you need – they may well be able to come up with a solution. If you have not got an OT or physio, ask your GP to make a referral for you. Depending on the item(s) you need, your OT or physio should be able to guide you as to whether it is something that could be funded either by the NHS or the Local Authority.
LA budgets are limited and may not cover every item that your OT suggests could be useful – and there can be delays. Also, new products are coming on to the market all the time. If you do want to see what the range is, and potentially buy something it is best, if possible, to try it out first. You may find it helpful to visit one of the: Equipment Exhibitions, Sport and Other Events.
If an item cannot be funded by the NHS or Local Authority but your OT or other professional agrees it would be a good idea, you may be able to get help with funding. Support & Outreach at SMA UK may be able to suggest charities that might provide a grant. For more information see the Funding for Equipment section below.
Check Health, Local Authority Or Other Funding
Buying used disability equipment
If the NHS or Social Services can’t provide you with an item, this can be a good way to save money and get the products you need for daily living.
Scope gives a summary of things to think about and where to look.
Selling used disability equipment
If you have disability equipment that you no longer need, you may be able to sell it.
Scope gives a summary of suggestions for how to go about it.
Donating and recycling used disability equipment
There are several charities that accept donations of used disability equipment.
Scope gives a number of suggestions.
If you are keen to try to pass on your equipment to other people affected by SMA, it might be worth checking if this is possible through one of the SMA online communities.
Equipz – Disabled Living’s services which relate to the provision of information and advice about equipment and services.
Naidex – Europe’s most established event for supporting independent living, showcasing wide-ranging solutions to improve mobility and accessibility, the latest innovations and tech, and explores the future of digital and physical accessibility. The event is for anyone who is living with a health condition or impairment, as well as anyone caring for or supplying to this community. Their event features suppliers, seminars and panels, and a host of interactive features.
Kidz to Adultz exhibitions – Organised by Disabled Living, these are five of the largest, free UK exhibitions dedicated to children and young adults aged up to 25 years with disabilities and additional needs, their parents, carers and professionals who work with them.