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.
I eye typed a love message to the Angel
I have to thank the angelic speech therapist, Ms Tan Xuet Ying, who mysteriously appeared at my bedside when I was warded in mid-2018. She introduced an AAC, namely Tobii, to me. I was hesitant because then I still got my voice and I was computer illiterate. The high cost also deterred me then. But the Angel encouraged me persistently but nicely to give the Tobii a try. I pretended to say that I will try so that she could leave. After she left, I was bored with no good TV shows. So, I asked my caregiver to switch on the tablet. After some efforts to calibrate, I started to use my eyes to type. I was amazed and thrilled by the simplicity of using it. So, I eye typed a love message to the Angel. Almost one page. I am not sure whether she is still keeping it.
After being discharged from the hospital, I did not immediately buy it because I could still speak then. But from early 2019, my voice started to get slurred and soft. My caregivers sometimes could not understand me, and also they could not send or return messages from my phone. Both got frustrated and I was in bad mood most of the time because caregivers could not understand what I wanted and at the same time, lost contact with regular friends. Then, I decided to get the Tobii in mid-2019.
Since then, I have been using Tobii every day and everywhere I go. Many friends have not seen such wonderful and enabling technology before. Also, many of them almost forgot that I was handicapped because of my quick and smart replies to their messages. I have been also actively promoting AAC, in particular Tobii, to as many MND patients as possible. In between, I was keeping contact with Angel, and consulting her on technical matters…… I have to admit too that because of Tobii, we managed to gather kind-hearted volunteers and some MND patients ourselves to form the MND Association in Singapore on 27 Apr 2021.
I collapsed at home on 25 June 2021 and was intubated in KTPH. I requested to be transferred to TTSH because I wanted Dr Chan Yeow to do the tracheostomy for me and also because I was much more familiar with the speech therapists, and others in TTSH.
How Tobii Dynavox eye tracking works
During my 30-day stay in both KTPH (only 3 days) and TTSH, I made the following observations and I have given this feedbacks to the TTSH’s ward doctors and nurses (and followed up with an email to TTSH’s CEO):
1. There was no or very little knowledge among the nurses on non-verbal communication. No one knew, on my first few days, that one blink means yes, don’t even talk about communication cards. I was very distressed and my tears flowed freely.
2. Almost all nurses had not seen a Tobii before, don’t talk about helping to calibrate or even operate. Very lucky for me, the Angel appeared, and set up the Tobii for me, plus did the necessary briefing to the nurses.
3. Like all systems, there would be some instances when the hardware or software does not function well. I encountered a few such breakdowns during my stay. And I asked the nurses to look at me and see whether I blinked vigorously at them. If I were, then there were some problems with Tobii…… I am thinking it would be ideal if there exists a separate alarm system to alert the nurses or caregivers if Tobii malfunctions.
4. Using Tobii needs substantial patience from both the users and listeners. Many a time, the listeners will try to complete the sentence when the users are typing. If the guess is correct, it is good. If it is wrong, it can be frustrating to the user. Also sometimes, before the reply is typed finished, the listener may ask another question. This innocent mistake can be frustrating to the user. In some cases, the listener just answers himself, or even walk away because the responses are too slow. So, Tobii users should have some sense of humour and of course, patience.
5. With better awareness of AAC, the hospital should try out some pilot projects to equip the ward or the hospital beds with Tobii. This needs more public education from the speech therapists to both the hospital staff and the members of public. The AAC can range from a simple communication card to Tobii, and some new innovative technology in between. The beneficiaries are ultimately the patients.
Finally, I wish everyone the best. There is much greater potential of AAC being used for the benefits of all, simply because communication gives meaning to life.