Non-Sitters

Physiotherapy and rehabilitation for non-sitters aims to reduce the impact of tight joints, optimise function, and help people tolerate different positions such as being on their back, side or sitting with assistance. When a PT or OT provides recommendations, they should give guidance and provide training where appropriate.

Different supports such as rolls, wedges, beanbags and pillows will help support nonsitters when lying on their back, side or in a sitting position.

Custom-made seats and sleep systems are recommended together with power chairs or strollers that allow a reclined or tilting position.

It is important that everyone with SMA has as much flexibility in their joints as possible to achieve or maintain independence. Stretching muscles that are usually ‘tight’ is recommended.

Not all of these options are appropriate for everyone, but possibilities include:

• Assisted stretches – when someone helps with the movement. The recommended minimum number of times per week is three to five sessions.
• Splints – which support or immobilise a limb or the spine. Arm splints can assist with movement but still allow joint flexibility. To be effective at improving flexibility, splints should be applied for more than 60 minutes or overnight.
• Serial casting – which puts the limb into a series of plaster casts over a period of time, slowly correcting the position with each recasting.
• Braces – which are similar to splints and are used to support part of the body to help stabilise and promote movement. For these to be effective, they have to be used at least five times per week.
• Neck collars – can be helpful for head support and a good neck position that can assist with breathing.
• Standing frames – are an assistive aid used to support people safely in an upright ‘standing’ position. They can be used to help maintain or improve posture, bone health (bone mineral density, BMD) and digestion. These aids are not suitable for everyone and should only be used if advised by a PT.

Equipment and technology may be used to help with movement. Exercise and physical  movement can be a challenge for some non-sitters – activities in water can be helpful, if the head is supported and there is appropriate supervision. A PT or OT can advise on this.

Regular use of different techniques and devices to maximise breathing ability and remove secretions is very important. Chest physiotherapy is especially important during illness or before surgery (see Section, Breathing (Respiratory and Pulmonary Care)).

A good example of technology that can be used to aid communication and increase independence is an ‘eye tracking device’. This enables a person to use their eye gaze as a way of giving instructions  via a computer screen.