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 all​ow 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 Kexin, Consultant, Department of Neurology​, National Neuroscience Institute​ (NNI), a member of SingHealth​ group.

1. For weakness: There are mobility aids to help patients, like bendable spoons/modified utensils to help patients with weakened hand muscles feed themselves.
2. For speaking: There is a wide range of communication aids available, from picture charts and alphabet charts to higher technology communication devices with predictive speech/ text. Stephen Hawking is well known for for his speech generator communication device that he uses his single cheek muscle to operate.
3. For swallowing: A feeding tube may be inserted into the stomach to facilitate nutritive intake.
4. For breathing: A non-invasive mask ventilator helps patients breathe while sleeping.

Ref: O17