Enhancing Clinical Practice in Motor Neuron Disease (MND) Rehab

Motor Neuron Disease (MND) presents complex challenges for neuro rehab professionals due to its progressive and multifaceted nature. For physiotherapists, occupational therapists, and exercise physiologists, staying up to date with the evidence base is essential to delivering effective, client-centred care.

At ARC, our Motor Neuron Disease Special Interest Group (SIG) recently reviewed the latest research and therapy recommendations, with a focus on exercise prescription, respiratory management, and seating/head positioning. Here are the key insights to guide clinical practice in MND rehabilitation.

1. Exercise Prescription in MND

While evidence for exercise in MND remains limited and sometimes inconclusive, Zhu et al’s (2022) systematic review and meta-analysis offers some guidance. The review evaluated various exercise interventions, suggesting that carefully prescribed, low-to-moderate intensity aerobic exercise and strength training may support function and quality of life without accelerating disease progression.

Clinical considerations:

Tailor programs to individual capabilities.
Monitor fatigue closely and adapt interventions as MND progresses.
Prioritise quality of life and safety over intensity.

2. Respiratory Management in Neuro Rehab

Respiratory decline often signals transition from moderate to late stages of MND, making early screening and intervention vital. Tools such as expiratory flow meters and threshold inspiratory muscle trainer devices were discussed.

Evidence highlights:

Inspiratory muscle training improves inspiratory muscle strength and ALS Functional Rating Scale scores following an 8-week inspiratory muscle training program (Vicente-Campos et al, 2022).
Expiratory strength training can improve expiratory strength and maintain peak expiratory cough flow (Plowman et al, 2018).
A range of interventions—breath stacking, cough assist, non-invasive ventilation and respiratory strength training —are feasible and safe (Sales de Campos et al, 2023). Further research is needed to clarify doses and optimal timing for initiating respiratory interventions.

Clinical takeaways for therapists:

Screen regularly: ineffective cough, SpO₂ <94%, peak flow <270L/min, breathless when lying down/at rest or symptoms of hypercapnia, warrant referral to a specialist respiratory physio.
Implement respiratory care in the earlier stages of MND care:
- early airway clearance strategies (ACBT, PEP devices, incentive spirometry, breath stacking )
- expiratory/inspiratory muscle training (threshold devices)
- breathlessness management – monitoring and regular assessment
In mid and later stages of MND, consider:
- non-invasive ventilation
- more invasive airway clearance techniques
- palliative care (would be under the guidance of specialist respiratory team)
Use expiratory flow meters with filters or masks to accommodate hygiene and comfort.
Explore dual-function inspiratory/expiratory trainers, which are affordable and adaptable.
Educate clients and carers on the use of these devices, with support coordinators facilitating access through funding pathways.

3. Seating & Head Positioning in MND

Postural management, particularly head and neck support, is critical for comfort, safety, and daily function. While head collars are a common solution, they are only one part of a broader strategy of postural management and clinical reasoning is relied upon to establish the most appropriate interventions. Seating position and head positioning are important factors to be considering.

Seating considerations:

Use the ALS Functional Rating Scale to guide equipment planning e.g. a significant decrease in the ‘gross motor’ domain may indicate the need for a wheelchair to maintain mobility and independence.
“Future-proof” equipment that can be adjusted to continue to provide support as disease progresses (e.g. consider adjustable power wheelchairs with sufficient head support and hand controls) to reduce repeated funding applications.

Head positioning strategies:

There is limited research and evidence base on head positioning support in MND. Spears et al (2023) considers the role of collars in the MND population compared to other conditions, such as spinal cord injuries. In conditions such as spinal cord injuries where most of the head collar research is completed, the objective is to restrict cervical movement to prevent further injury. Whereas, in the MND population, the role of neck collars is to provide comfort and controlled movement. Therefore, we can’t always translate research on other conditions/indications for neck collar use to MND population.

Collars in MND should prioritise comfort and controlled support, rather than immobilisation.
Self-reported comfort is a key determinant of adherence – consider self-reported levels of comfort by utilising the PSFS.
Consider impact on speech, swallowing, breathing, ability to don/doff and functional need/goals.
Consider combining collars with tilt-in-space seating, forehead bands, or external supports.
Involve carers in safe handling education, especially for transfers and transport e.g. travelling in a car.

4. Navigating MND Progression

Defining early, mid, and late stages of MND remains subjective in clinical settings. While research offers some staging criteria, in practice, transitions are often based on functional decline—particularly in mobility and respiratory capacity. Clinicians are advised to rely on their clinical judgement, supported by multidisciplinary input, to guide intervention timing and intensity.

Conclusion

Managing MND requires a flexible, evidence-informed approach that adapts to each client’s evolving needs. While research continues to develop, practical strategies in exercise, respiratory care, and positioning can significantly enhance quality of life. Collaboration, creativity, and clinical insight remain central to delivering effective care in this complex field.

Reflection Questions for Clinicians

Do you routinely screen respiratory function in your clients with MND (or other neurodegenerative conditions)?
Which assessment tools do you find most useful?
How do you balance evidence-based recommendations with individual client goals and comfort?