If you have been recently diagnosed with SMA, you may need walking and  / or standing equipment.

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.

If you cannot sit comfortably and safely because of your muscle weakness or any breathing difficulties and are seen by a specialist occupational therapist (OT) or physiotherapist (physio), they should recommend comfortable seating for you. If you are not being seen regularly by an OT or physio, talk to your parents about contacting your GP or neuromuscular consultant and ask for a referral to an OT or physio.

Funding

Your OT should be able to supply some seating free via the NHS or the Local Authority. Usually they can only supply what is needed at your main home address. If your parents are separated or you spend a lot of time with grandparents or other relatives, it might be good to have more than one seating option, but your family will probably have to find the money for this.

If your family does 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 your family does not place an order or pay any deposit until you have all funding ready or it has been pledged.

For more information see: Funding for Equipment below.

If you are finding it hard to get out and about with your friends and family to do the things you enjoy, talk to your OT or physio if you have one. If you do not see one regularly, talk to your parents about contacting your GP or neuromuscular consultant. Explain what is going on and ask them for a referral so you can get advice.

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 might be worth thinking about.

Read More >

The muscle weakness caused by your SMA may mean that you need powered mobility equipment to get around at home and school and for going out. Whether you have had one or several powered wheelchairs before, or whether this is your first, we hope these pages will help you get the chair that best suits you and your family.

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If the muscle weakness caused by your SMA means the current set up you have in the bathroom is not working for you, you may need some equipment to help.

Washing and Using the Loo

If you already have an occupational therapist (OT), tell them what the problem is and they will do their best to sort out equipment so that doing these things are as easy and stress-free as possible for you, your parents and anyone else who helps you out with your personal care. If you do not have an OT but you are having difficulties, your parents can contact your GP or neuromuscular consultant and ask for a referral to an OT. In many areas you can self refer to your local authority Occupational Therapy service for Equipment and Adaptations.

There is a wide variety of equipment and new products coming onto the market all the time to suit different ages. These include:

• Using the bath: bath chairs, lifts, cushions, inserts and portable baths
• Showering: multi-function shower and commode chairs, mobile and wall-mounted shower cradles and trolleys, shower chairs and stools
• Using the loo: toilet seats, cushions, frames and rails, urine deflectors, junior and travel urinals, wash and dry facilities.

Living Made Easy – choose the top tab: Health and personal care shows some of the options that might be possible for you. Having an idea of what is available may be helpful for any discussions with your OT / physio

Your OT should be able to advise you about what would work best for you. They should be able to provide most items of equipment and / or tell your parents how to get assistance to pay for them. SMA UK’s Support & Outreach Team may also be able to help with funding suggestions. For more information see: Funding for Equipment 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 will need to buy a RADAR key

The muscle weakness caused by your SMA may mean that the bed you have now is not comfortable and safe for you. A different mattress or pillow may be more comfortable. Some people find a sleep system (which uses wedges and rolls to support the body) is 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, your parents can ask your GP to make a referral or self- refer to your Local Authority Occupational Therapy service.

Some families find it useful to buy a portable electric pressure relieving mattress to take on holiday or for when you stay with friends or relatives.

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.

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

The NHS should fund a suitable bed and mattress for you at your main home address. If your parents are separated or you spend a lot of time with grandparents or other relatives it may not be possible for a second bed to be funded. It is also unlikely that a portable pressure relieving mattress would be funded but it is worth your parents asking your OT.

If you do need additional sleeping options, your parents may want to apply for help to buy them. Support Services at SMA UK can suggest charities that may provide a grant. Most charities will not fund anything that has already been bought. It is important that your parents do not place an order or pay any deposit until all you have all the funding ready or pledged. For more information see: Funding For Equipment below.

Once you are taller and heavier, your parents and PAs (Personal Assistants) need to avoid injuring their backs as well as making sure you are lifted safely. Your physio and OT can give advice on this and equipment that will help, such as hoists.

Read More > 

This includes smartphones and iPads / tablets, but there may be some other Assistive Technology (AT) around that you would find helpful. 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
• Environmental control systems

For play and learning opportunities at home, you will usually need an assessment by a Specialist in Assistive Technology. Your OT / physio will be able to tell you about local services and potential funding.

If you need specialist computer access at school, this should be assessed through your Education, Health and Care Plan (EHCP – see the If You Need More Support section on this page) and be provided through education services.

If an item cannot be funded by the health or local authority but your OT or other specialist can confirm you would benefit from having it, you may be able to get help with funding. Most charities will not fund anything that has already been bought, so it is important not to place your order or pay any deposit until all funding is ready or pledged.

In this video, Julian Fiorentini talks with Emma Vogelmann about getting his home set up and other useful tips:

Recorded December 2020

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." Julian

Communication aids and environmental controls

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.

Environmental control systems (ECS) 

These can be built into smartphones, laptops and wheelchair control pads including 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 the person to call for help.

Your Local Authority and community OT can advise. They will usually involve an Electronic Assistive Technology (EAT) Service provider with in depth knowledge of latest developments and between them advise what funding might be available and how to apply. An ECS may be included in an application for a Disabled Facilities Grant – read more on this page.

Muscular Dystrophy UK’s Adaptations Manual looks at Environmental Controls in more depth

These links take you to a whole range of information and products:

• 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 – provides information and support on all aspects of computing for disabled people.

Special Effect – adapted gaming controls.

A lot of the possible equipment you might find you need to support you day-to-day is mentioned in the other equipment sections. There are many other items and accessories, sometimes small, which can also make a difference and help you at home and school, 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

You can talk to your OT (occupational therapist) or physio about what help you need – they may well be able to provide it. If you have not got an OT or physio, ask your GP to make a referral for you. If you need something for a medical reason, the health authority should fund it. If you need equipment to help with personal care or daily living, your Local Authority should fund it via Social Services. Your OT should guide you.

These 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 your parents are thinking of buying something, do ‘try before you buy’. You may find it helpful to visit one of the equipment exhibitions held around the country. There are four ‘kidz’ exhibitions in the UK a year specifically for children and young people (aged up to 25 years) – read more here.

If an item cannot be funded by the health or local authority but your OT or other professional can verify you would benefit from it, you may be able to get help with funding. See Funding for Equipment below.

Check Health or Local Authority Funding

Your own fundraising

This might be via cake sales, sponsored events or online appeals such as crowdfunding. It pays to be very clear about your target and details of the equipment (including maintenance etc.) that you are fundraising for. It is good to let your sponsors know what you will do if your money exceeds the target you need.

You can find advice and possible avenues for online fundraising here:

• Independent advice on crowdfunding
• GoFundMe
• JustGiving
• Tree of Hope

This is how Jasmine went about her own fundraising:

"The way I fundraised was by simply being persistent – I arranged quiz nights, raffle nights, pub nights…you name it I did it!" Jasmine

Buying used disability equipment

If the NHS or Social Services cannott 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. It 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 equipment and services to the 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.