Motor Neuron Disease in Singapore
Below is an excerpt from an article I wrote about motor neuron disease that appeared in Singapore Health, the magazine published by SingHealth, which is one of the largest healthcare groups in Singapore.
The basics about Motor Neuron Disease
Motor Neuron Disease is a rare disease that has been thrust in the public eye by famous sufferers, like baseball great, Lou Gehrig, and prominent scientist, Stephen Hawking.
By Tan Hwee Hwee
Lou Gehrig won six world series titles with the New York Yankees and was described as “the game’s No. 1 batsman” by Time magazine. But in 1939, he noticed a steady decline in his strength – he was diagnosed with amyotrophic lateral sclerosis and died two years later. Now known as Lou Gehrig’s disease, amyotrophic lateral sclerosis is the most common of motor neuron diseases. It is also what world renowned scientist, Stephen Hawking, has been suffering from for the past five decades.
Globally, an estimated 144,000 new cases of motor neuron disease have been reported each year. In Singapore, an estimated 300 to 400 people suffer from it. Although it is commonly believed to affect older people, young people in their 20s can also get it, said Dr Ang Kexin, Consultant, National Neuroscience Institute (NNI). Hawking is a prime example, having contracted the disease when he was barely 21.
The disease is progressively degenerative. Motor nerves (nerves involved in muscular stimulation and contraction) become damaged and eventually stop working. Like wires, these nerves carry electrical impulses between the brain and the body. Symptoms may start in one area of the body, and then spread to others. Dr Ang said patients are concerned because the cause of the disease is unknown, and despite ongoing research, no cure is in sight. They also worry that it could be hereditary. “But only 5-10 per cent of cases are inherited, so it’s unlikely that patients will pass it on to their children.” The biggest concern is the progressive deterioration. Dr Ang said that existing treatments do not offer a cure; they focus more on managing the symptoms with the help of medication, and the use of tools and equipment to alleviate symptoms and improve a patient’s quality of life. At NNI, a multi-disciplinary team comprising neurologists, specialist nurses, physiotherapists, speech and language therapists, occupational therapists, dieticians, prosthetists and orthotists, rehabilitation and palliative care physicians, and counsellors work with patients suffering from the disease.
Dr Ang said that the team’s approach is palliative care. “There is a common misconception that palliative care is about ‘giving up’. But it is actually about finding ways not to give up on quality of life. It involves total active care of a patient whose disease is incurable. It realigns and reframes hope to allow the patient to attain achievable goals.” For example, if a patient hopes to write a book but has lost strength in his or her hands to write or type, doctors can suggest devices such as a foot pedal-controlled or eye gaze activated mouse to allow them to continue using a computer. “To quote Cicely Saunders, founder of the modern hospice movement, ‘You matter until the last moment of your life. We will do all we can, not only to help you to die peacefully, but also to live until you die’,” said Dr Ang.