In a recent interview with the BBC, Rugby star Rob Burrow broke down as he revealed that he was diagnosed with motor-neurone disease (MND). “It was a bit of a shock. I had not had any sort of prep for being told that you (sic) have something where there’s no cure,” said the 37-year-old.
A life-changing condition, MND affects everybody differently, often causing increasing loss of mobility and difficulty in basic bodily functions, such as walking, speaking, swallowing and breathing. First described by Jean-MartinCharcot in the nineteenth century, the most common MND is amyotrophic lateral sclerosis (ALS). Some well-known global figures affected by ALS include the renowned, late English physicist Stephen Hawking, who lived with the disease for many decades until his death in March 2018. Guitar virtuoso Jason Becker has also been living with ALS for several years.
ALS and MND are also known as Lou Gehrig’s disease, named after the famous New York Yankee Base Ball player who was affected with the disorder. Relentlessly progressive, these are neuro degenerative disorders with no cure, causing muscle weakness, disability and eventually death. It can appear at any age, but symptoms usually appear after the age of 40 years, affecting more men than women.
Taking the expert opinion
Dr Jayasree, consultant neurologist, KIMS Hospitals, described MND as a neurodegenerative condition that affects the brain and spinal cord. “Symptoms include limb and torso muscle weakness, difficulty in swallowing and speaking, and respiratory muscle weaknesses that lead to respiratory failure and death.”
While reiterating the incurability of the disease, Dr Shyam Jaiswal, consultant neurologist, CARE Hospitals, points out how ethical debates around assisted suicide —mostly a very difficult topic for patients and their relatives — as the course of this disease has put a spotlight on it. However, he also points out that symptoms of the disease can be controlled, thus ensuring optimum quality of life (QOL). In other words, while MND is still incurable, it isn’t untreatable and symptoms can be managed.
That being said, Riluzole is currently the only drug licensed for the treatment of individuals with ALS. The medicine has been shown to slow down the progression of the disease.
“When prescribing medicines, however, it’s important to consider if the patient has dysphagia and is unable to swallow,” cautions Dr Shyam, adding, “Speech and language therapists (SALTs) will be able to provide advice on the consistency of food and drinks, as well as the appropriate body positioning during meals. Dietitians can help determine calorific intake and optimise nutritional supplements.”
