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19th October 2015

Hollywood and social media bring motor neuron disease into the spotlight

Thanks to last summer’s Ice Bucket Challenge frenzy on social media followed by the Oscar-winning film The Theory of Everything about the life of theoretical physicist Stephen Hawking, motor neuron disease (MND) has gone from a relatively unknown illness to one that’s squarely in the public eye.

MND (also known as Lou Gehrig’s disease) attacks the nerves in a person’s brain and spinal cord, meaning messages gradually stop reaching their muscles. This causes increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. As we saw with Stephen Hawking (played by Eddie Redmayne in the film), the onset of the disease can be so subtle that a few stumbles or fatigue can easily be brushed off as clumsiness or stress-related tiredness. Thus, people don’t always go to the doctor straight away to get symptoms checked out. Moreover, it doesn’t affect everybody in the same way.

In the film, Hawking has a particularly bad fall that lands him in hospital, where tests reveal that he has the disease. These days, neurologists use various methods to diagnose MND, including blood tests, electromyography where fine needles are used to record the nerve impulses within certain muscles, nerve conduction tests involving electrical impulses that measure the speed at which your nerves carry electrical signals, and transcranial magnetic stimulation, a non-invasive procedure that measures the connection between the brain and the muscles by stimulating small regions of the brain with electrical current. There are also tests such as magnetic resonance imagery (MRI) scans, which doctors use to rule out other possible conditions that can mimic the symptoms of MND.

Though Hawking was only 21 when diagnosed with amyotrophic lateral sclerosis ‒ the most common of the four types of MND ‒ the majority of diagnoses come after the age of 40. Life expectancy depends on which type of MND a patient has, but Hawking is one of a small percentage of people who live more than ten years after being diagnosed.

The earlier the diagnosis, the better the symptoms can be managed to help achieve the best possible quality of life. This can range from physiotherapy to ventilation machines, depending on a person’s needs. According to Hawking, not being able to communicate effectively has been one of the most challenging aspects of the disease. “Everyone with MND should be able to access speech and language therapy and the range of communication equipment technology which is out there,” he said in a recent interview.

As with most serious illnesses, family and carers can become overwhelmed and often struggle to cope. The film, which was based on a novel by Hawking’s ex-wife Jane, focuses on their relationship and drives home how hard it was for her to look after Stephen as his health deteriorated. Jane had very little help at first and was often near breaking point, especially as she was raising small children at the same time. Although it’s still not easy going, at least today there are well-established organisations like the MND Association in the UK, which educates patients and carers, and offers online support including a forum where people can share their experiences.

In 1963 Hawkins was given two years to live, but the world is lucky that he’s defied the odds and continues to share his genius with us. Despite being largely paralysed and wheelchair-bound, and having to communicate using a single cheek muscle attached to a speech-generating device, he continues to fight. “I am damned if I’m going to die before I have unravelled more of the universe,” he says. Many attribute his longevity to this positive attitude.