Motor neuron disease (MND) is a rare, progressive condition that affects the nerves controlling muscle movement. It impacts how a person walks, talks, swallows, and eventually breathes. While there’s currently no cure, early support and an integrated approach to care can make a real difference to the quality of life of someone with MND.

In South Africa, access to care may differ depending on where someone lives and what their medical aid in South Africa covers. But with early planning and the right team in place, people living with MND can maintain independence for longer and be better prepared for the journey ahead.

MND refers to a group of diseases that damage the motor neurons – the nerve cells that carry signals from the brain to the muscles. Over time, these neurons stop working, causing muscles to weaken and waste away.

There are different types of MND, including amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA), progressive bulbar palsy (PBP), and primary lateral sclerosis (PLS). Symptoms often begin subtly and vary between individuals, which can make early diagnosis challenging.

Although MND remains “obscure, even in the broadest possible terms”, with both genetic and environmental causes, research teams around the world are working to better understand and treat these diseases.

MND usually progresses in three stages, each with its own challenges. During the early stage, people may notice muscle weakness, cramps, or twitching, often in the arms, legs, or face. They might struggle with grip, balance or speech, but these signs are often mistaken for other conditions.

Symptoms become more pronounced in the middle stage. Muscle weakness may increase, and joint stiffness can make movement difficult. Some people experience personality or emotional changes, and breathing may start to feel more laboured. Swallowing may also become harder, requiring input from a speech and language therapist.

In the advanced stage, people often experience severe mobility limitations and paralysis. At this point, assistive technologies become essential – such as communication aids, feeding tubes or non- invasive ventilation. A wheelchair and home adaptations (like hoists or ramps) can support daily care.

The progression varies from person to person, but the average life expectancy after diagnosis is two to five years. This makes early, coordinated care especially important.

Getting support early helps people living with MND manage symptoms, plan ahead, and reduce stress. A diagnosis can be overwhelming, but building a support team and accessing available resources early can improve quality of life in the longer term.

This support often includes:

While some individuals may qualify for dread disease or disability benefits, many do not. Local organisations like the Motor Neuron Disease Association of South Africa (MNDA SA) help fill these gaps by offering counselling and support groups, and lending medical equipment.

Motor neuron disease doesn’t only affect the body – it impacts every aspect of a person’s life. That’s why care by a multidisciplinary team is so essential. An integrated or multidisciplinary approach means different healthcare professionals work together to support the person, rather than treating isolated symptoms separately.

This team might include a GP, neurologist, physiotherapist, speech therapist, dietitian, counsellor, social worker, caregivers, and family members. Coordinated care reduces hospital admissions and carer dependence, improves day-to-day functioning, and makes it easier for everyone to understand and respond to changes as the illness progresses.

UK-based neurologist Professor Pietro Fratta and his team focus on understanding the extraordinary complexity of motor neurons – among the most intricate cells in the human body. Their research emphasises the importance of collaboration and a holistic approach to slowing disease progression and alleviating symptoms.

Although MND remains difficult to treat, international research is making progress. In late 2023, University College London (UCL) released a documentary called Turning the Tide, sharing a discovery about how a specific protein, TDP-43, is lost from the motor neuron nucleus in people with MND.

This loss seems to disrupt how another protein-encoding gene, UNC13A, is produced – potentially triggering the disease’s progression. Fratta’s team believes that by targeting this process in the lab and later in clinical trials, we may be able to stop or slow the nerve damage.

While treatments are still being developed, the research offers hope – and strengthens the case for long-term investment into what has too often been seen as a “lost cause”.

Although MND is not currently listed as a prescribed minimum benefit (PMB), certain aspects of care–such as allied health services, medicines and assistive devices – may be covered by a comprehensive medical aid plan. It’s important to review your benefits and speak to your medical scheme for guidance on available cover.

If you’re a Medihelp member, you can log in to the Member Zone to find out what benefits your plan offers and how to apply for additional support and services.

Members on MedPlus and MedElite may qualify for non-PMB chronic medicine cover for MND, subject to pre-authorisation and funding guidelines. Other support, such as consultations or assistance, may be covered from your plan’s medical savings account.

Conclusion

Living with MND is undeniably challenging – but early diagnosis, proactive support, and a multidisciplinary care team can make the road easier to navigate. In South Africa, MND is often underdiagnosed, which makes awareness and early intervention critical. Initiatives like the J9 Foundation, started by the late rugby legend Joost van der Westhuizen, have helped raise awareness and support the establishment of dedicated MND clinics in some public hospitals. These clinics offer coordinated care and guidance for families navigating the complexities of the condition.

If you or a loved one is living with MND, don’t wait to build your support system. Explore available resources, speak to your healthcare provider about specialist clinics, and connect with local organisations. Start now – because early support isn’t just helpful, it’s essential.

Further reading

Message banking* brings hope for persons with MND – A fascinating local initiative by the University of Pretoria that allows people with MND to preserve their voice and communication style before speech deteriorates. Read more

(*Note: This is a research-based initiative and may not be widely available yet, but it reflects the kind of innovative approaches emerging in South Africa.)