I am Ooi Lin Kah, a MND (motor Neurone Disease) patient, 63 years old. I was diagnosed in NNI (TTSH) in late 2013. Since early 2017, I had been wheelchair bound, and lost the functions of my two arms and fingers one year earlier. For feedings, I have a PRG tube since Sep 2020. From late 2017, I was on NIV (non-invasive ventilation) round the clock, until I did a percutaneous tracheostomy operation on 29 June 2021 (excellently performed by Dr Chan Yeow).
My MND illness, specifically ALS (Amyotrophic Lateral Sclerosis), is a terminal, progressive neurodegenerative disease, with a prognosis of 2-5 years. I am now into my 9th year with the help of three special artificial life sustaining technologies: (1) PRG feeding tube, (2) Tracheostomy breathing apparatus and (3) the AAC (Augmentative and Alternative Communications) device, ie eye gazing technology.
Among these three, the PRG and Tracheostomy are giving inputs to my physical subsistence but the AAC is giving me the SOUL, the quality of life and the willingness to continue living! … Without AAC, I cannot communicate my physical needs to my caregivers, and more importantly to exchange my gratitude and my love with my family, caregivers and friends… as well as with the medical professionals.