Lin Kah was one of the early champions of our organisation, bringing together our MND organisation and coordinating -- to the very end -- our group's community outings. His indomitable spirit inspired those of us who worked closely with him.
Losing a fellow "Warrior" is painful, a term that Lin Kah embodied.
Lin Kah's last wish was to donate his brain after death for biomedical research.
 

Life is full of unexpected twists and turns, and for certain individuals, the journey can be incredibly challenging. Today, we share s true story of Philip, a senior engineer in the semiconductor industry, who was diagnosed with Amyotrophic Lateral Sclerosis (ALS) at the young age of 36. Over the past eight years, Philip's unwavering resilience and unyielding determination have been a shining example of strength in the face of adversity. His journey serves as a powerful testament to the human spirit and the ability to overcome even the most daunting obstacles. We're proud to announce that Philip now serves as our MNDaSG Vice President, continuing his advocacy and support for the ALS community. Let's join him in making a difference to spread hope and positivity together!
ALS is a progressive neurological disorder that affects nerve cells in the brain and spinal cord. It's a rare disease that causes muscle weakness, paralysis, and eventually respiratory failure. The average lifespan of an ALS patient after diagnosis is two to five years. However, I have beaten the odds and lived with ALS for a long eight years.
It all started when I noticed that I could not use my fingers to screw things in and my speech was becoming slow. So, I decided to go to the National University Hospital (NUH) for a check-up. After a year of testing, I received the devastating news that I had ALS.
Although my diagnosis brought immense sadness, my wife and I refused to give up. We continued to exercise by swimming and brisk walking at the gym. Despite the worsening of my condition, we actively sought out new ways to support my body and even explored Traditional Chinese Medicine treatments such as acupuncture, massage, and herbal medicine. We even traveled to Thailand for a two-day special massage and more.
However, after two years, I could not swim due to the weakness in my arms. I could only walk slowly in the pool. Around the third year, my balance became too unsteady to walk on gym machines or in the pool. Yet, I was determined to keep walking and started taking slow walks in parks and gardens. Eventually, after five years, I realized that I could no longer will my body to move normally, and I decided to resign from my job. I began thinking about how to support my daily life and maintain some independence. To achieve this, I had to learn about smart home systems to convert my house into a place I could control using my smartphone.
Throughout my journey, I held onto hope despite my challenges. I underwent various treatments, some of which were painful and difficult to endure. Despite this, I am grateful to have surpassed the average five-year lifespan of an ALS patient. I maintained my faith that everything else would fall into place if I did my best.
Now, eight years after being diagnosed, I walk slower than a snail’s pace, I hunch rather severely and hold on to my wife's hand to move around, but I still make myself walk. Although I fall more often, I still persist. I only use a wheelchair when I go shopping and traveling. I am thankful for living in the 21st century because I can manage my life through online shopping, internet banking and maintain my connections with friends and family through technology.
I am deeply grateful for the unwavering support of my family and friends, particularly my wife, who is my caregiver. Her encouragement has been invaluable during moments of emotional instability and depression.
Like mine, your life might have worsened significantly, but please do not give up. Live your life to the fullest, like me, even with ALS. Our stories will be a testament to the human spirit and how determination and resilience can overcome even the most challenging circumstances.
 

Penned by Sophia Nicole DeVera Schmitz and Michelle Schmitz, and Robert Schmitz
Robert, my husband, and I had great difficulty accepting my affliction of Amyotrophic Lateral Sclerosis (ALS), colloquially known as “Lou Gehrig’s Disease,” or, in Singapore and the United Kingdom, “Motor Neurone Disease” (MND). Prior to my diagnosis, I was an active woman whose daily exercise regimen included walking up to 14,000 steps a day for shopping, errands, and visiting friends in Singapore.
There are no answers for how one contracts ALS. Currently, 90% to 95% of ALS cases are named “Sporadic,” having no known cause, while the remaining 5-10% of cases are deemed “Familial” or genetic. However, we believe that my ALS was triggered in early July of 2019 when a doctor administered a triple dose of steroids in my left knee and another steroid in the second toe of my left foot — supposedly to mitigate osteoarthritis. Within several weeks, I started limping and losing control of my left side.
The initial diagnosis was “drop foot.” Over the next year, a possible diagnosis of ALS was never mentioned by any of my doctors in either Singapore or in the Philippines, where I also sought a diagnosis. In early November 2019, a panel of interdisciplinary medical specialists at the Philippines General Hospital (PGH) concluded that my drop foot was neurological, not orthopedic.
Nevertheless, we conceded to one more very expensive, in retrospect, non-essential spinal operation here in Singapore. ALS is such a dreadful disease that doctors and ourselves were searching seemingly for an alternative diagnosis.
Despite the misguided diagnosis, I gamely attempted a “recovery” process in early 2020, undergoing aquatic, land, and TCM therapies prescribed for my rehabilitation. At that time, I was able to walk unassisted and I still worked out in the pool. However, after the pandemic struck, Singapore’s first 100-day COVID 19 lockdown prevented me from attempting any kind of prescribed therapeutic exercise: no pools, no gyms, no parks.
Two days after the lockdown was lifted, I collapsed into a heap while walking across our living room. The following afternoon, on 7 July 2020, the neurologist administering the first Electromyography (EMG) — a diagnostic procedure which checks the motor neurons responsible for physical movement — invoked the words “ALS,” a specific form of motor neuron disease. This second opinion was followed by a third opinion involving three full days of in-hospital tests, the results of which all of which strongly suggested — but did not conclude — a diagnosis of “ALS.” When I was diagnosed, I was 71 years old, a somewhat advanced age for this rare disease, which largely affects men between the ages of 40-70, so I had narrowly missed this window. This diagnosis was a surprise; and any sort of prolonged hospital stay seemed rather unusual to me due to my otherwise-picture-perfect health. In the decades prior, I had only spent one night in the hospital — specifically after giving birth to my twin daughters.
Within a very short time, from my initial diagnosis of Motor Neuron Disease (MND) in July and August of 2020, my abilities to function had been stripped away. Within my first six months with officially-diagnosed ALS, I lost my ability to walk. Three months later, I could not stand even with the aid of walkers. By September 2021, I had lost all control of both arms and hands. However, I could still sit up, attempt my physical therapy sessions, and thankfully visit the park.
I am beyond denial and even anger.
My husband tries to apply the adage, “Acceptance doesn't mean resignation”. Meaning: acknowledge an unwelcome fact and embracing a mindset that you define what you can control.
What can I control? First: maintain my quality of life. Second, extend my life without the aid of medication. At my age, hustling between hospitals would be a time- and energy-consuming exercise. No neurologist could convince my husband and me that my life would be extended — with preserving my current of quality of life — given the low efficiency rates of current FDA-approved regiments. Instead --- while I was still able to move-- we preferred spending long afternoons in the East Coast Park after my aquatic, physical, and TCM therapy sessions when the COVID restrictions were lifted.
When losing control of my body was becoming my “new normal,” my health deteriorated yet again. Within three days (74 hours) after receiving the COVID booster shot in October 2021, I was rushed to the ICU with acute pneumonia. Four days later, I faced another hard reality. A tracheostomy would be required to help me breathe. In short, I had a low probability of fully recovering my respiratory functions due to neuron degeneration of my diaphragm/lungs, which meant that there would be no other options for breathing except with a tracheostomy.
With this procedure, a curved hollow plastic tube would be permanently inserted into the trachea in my throat for mechanically assisted breathing via an electric ventilator. In many, if not most cases, a trache can be viewed as a temporary set-back. Given my progression of ALS, I was very quickly losing my ability to swallow, talk, and manually eat — basically, anything involving the tracheal muscles. The insertion of a trache would be required to help me breathe; which meant that this assisted breathing and tube feeding would be with me to the end. It was another battle lost.
One month later, or 41 full days in the ICU, I arrived home on December 2nd, 2021, requiring 24/7 intensive homecare, provided first with nurses, and later followed by trained caregivers and cum domestic helpers. My daughters rushed to Singapore from the United States. One of my daughters, Michelle, is credited for tracking down medical equipment and supplies for home use despite supply chain issues due to the COVID-19 pandemic. My other daughter, Nicole Sophia, left her graduate programme despite a lot of bureaucratic red tape almost a month before her term ended to be by my side.
Before I left Mount Elizabeth Hospital, my husband and our daughters converted the largest room of our flat into my “medical suite.” where I currently spend almost every single hour of my day and night. Due to my progressing paralysis, I have not left this room since my arrival in early December 2021. Instead, I spend my time in stasis, unable to do most things unassisted like eat or drink, cough, or scratch. Instead, I watch TV. The hospital bed is circled by a ventilator, a humidifier, an oxygen concentrator, along with a cough assist, suction machines, and shelves of medical supplies and equipment.
Though I am now locked within a paralyzed body, I can still think and hear as clearly as ever. My family and care team does everything they can to keep me comfortable. No longer able to speak as my paralysis has reached my throat and vocal chords, my caregivers are now my only avenues for communication. Perhaps starting late, perhaps my age, perhaps ALS affecting me so rapidly, or perhaps having to face yet another kind of existential dread, I cannot get the hang of Tobii or other eyegazers. When I need to convey my thoughts, we communicate by acknowledging letters with my eyes via an alphabet chart, similar to Jean-Dominique Bauby and Julian Schnabel‘s story about a paralyzed man in the film and French memoir “The Diving Bell and the Butterfly.”
Locked inside my own body, my main source of company, and entertainment, are my thoughts. My disappointments are largely that I am a burden on my family. Our daughters’ lives have been disrupted. Their worrying about me obviously impedes their promising careers. One of our daughters, Nicole Sophia, is following in my footsteps into Architecture, while her twin sister Michelle is using her microbiology and epidemiology science degrees for mitigating infectious disease to improving healthcare systems. Due to the distance, one or both daughters will travel once, twice, or as many feasible times a year, from Atlanta, Georgia where they reside, to Singapore — a distance of 17,627 km, or a 22-hour flight — away. Robert, who wanted to spend post-retirement in directorship roles related to his restructuring expertise, instead spends nearly all his time with me.
My greatest disappointment is that I cannot enjoy our retirement dreams, our passions of travelling, and spending time with friends and loved ones. I did not expect this rare disease. Most of my grandparents and great-grandparents lived well into their late 80s and 90s.
I am so thankful that my family and friends are trying to keep me in mind over the course of this excruciating physical, emotional, and existential journey.
Beulah De deVera -Schmitz
7 May 2023

In silence, we drove to our apartment the day that Beulah was diagnosed with ALS. When I closed the door, we had inconsolable tears. We were absolutely devastated. We could not understand why. Until that appointment with the neurologist, Beulah was diagnosed with “drop foot.” Until the COVID lockdown, Beulah was making progress following a regime of aquatic, land, and TCM therapies prescribed for rehabilitation.
All we knew from articles and medical literature is that there are no answers about how one contracts ALS, and 90% to 95% of ALS cases have no known cause. Beulah had or has no relatives with ALS, so we assume that it is a “sporadic” case, as 90% of ALS cases are. (The remaining 10% fall into a category called “Familial” or hereditary disease.) We quickly learned that ALS is a terminal disease with a terrible life and a painful death — without exception.
Now our focus is on keeping Beulah comfortable and secure. These are my axioms for caregiving.
I remind Beulah’s caregivers to put ourselves in her place. Often, I try imaging laying with a motionless body where I cannot even move a finger, with a field of vision of, say 15% to 20% of the room. My sensitivities for light, smell, and hearing are consequently elevated. Then having to tolerate a runny nose or tearing eyes or a small mosquito that finds its way under my hospital gown or in my hair before anyone notices. Meanwhile, I am unable to speak due to the trach and because ALS has reached my tongue /throat. Thus, getting your attention is by moans or grunts. -----Now, replicate Beulah’s situation for a mere 20 minutes. This could drive you crazy! Then think about living that for 24/7 for the past 563 days and counting.
For communication, suitable technology exists for expressing an ALS patient’s thoughts and communicating with the outside world. Had we thoroughly thought through the ALS journey before Beulah lost control of her hands and fingers, she might have mastered electronic Eye-Gaze technology. (Patients’ eyes can guide a computer keyboard to write their messages.) Beulah did not slur her speech before her acute pneumonia in October 2021 which promptly led to the insertion of the tracheostomy tube in her throat. Only then did I totally understood Beulah’s need for assistive devices when her life locked to a motionless body with curtailed speech. She could not master the Eye-Gaze technology despite recognizing the need and the active coaching and encouragement from several MNDa society members and TTSH therapist.
The second Axiom: -Safety. I have been told that ALS does not cause physical pain. Instead, pain might happen from accidents, such as when we move Beulah from the bed to the commode to the big chair and then back to her bed. Moving Beulah is highly choreographed to minimise bobbing head, hands falling, bumping whatever, etc. It takes at least two people — usually the caregivers and myself — to move Beulah without incident. A hoist was initially considered to smoothen any movements to protect the tracheostomy from twisting and pinching in her throat, but we decided to go without because we still have more dexterity than belts and crane. Sundays are a challenge because it is the day off for our helpers; they leave after we get Beulah settled. Then it’s me, alone.
Beulah’s caregivers are two wonderful Filipinas who are abundantly empathic and quick to respond. Intuitively they understand Beulah as she communicates her needs with her tongue, eyes, and nods. Both women had previous experience with disabled and aged individuals. Besides their high Emotional Quotient (EQ), they spend their entitled day off upping their skills for caregiving. Because we need to be attentive — Beulah needs 24/7 observation — they work well beyond what is required under MOM rules, often with 16 hours daily shifts. They rotate their day and night shifts every two weeks due to the otherwise- perpetual effect of “jet lag.”
Sustaining a healthy emotional and intellectual life for Beulah is a high priority. Unlike other crippling diseases such as dementia, an ALS patient is mentally alert. Beulah remains alert and engaged, aware of everything going on around her. She is in pretty decent spirits despite her situation, and her days have been filled with a lot of news, Netflix, or family video watching to fill the time. We watch tonnes of TV and movies. Beulah has always had a wide array of interests from architecture, documentaries, and politics to food and travel. We struggle to find meaningful TV to watch.
With the obvious logistical constraints from the Pandemic, Beulah was not well enough to travel outside of our house, let alone to the Philippines where we initially considered seeking further treatment and care, even after the borders between Singapore and the Philippines had finally opened up. I concluded that Beulah receives the best care here in Singapore; though our daughters specifically wonder how much of their mother’s Quality of Life would further improve if Beulah was closer to her extended family, college friends, and loved ones overseas. It would be very difficult to replicate this level of caregiving. We have a daily routine that works for Beulah, her two caregivers, and me. As a group, we have become quite dependent upon the responsiveness of Tan Tock Seng Hospital’s (TTSH) home ventilation team, who deserves the distinction as the centre of excellence for a vast number of ALS/MND patients in Singapore.
The emotional drain is enormous. Most of that drain comes from looking ahead. The moments when Beulah has prolonged struggles with her breathing, especially in the middle of the night, which are very disturbing. Beulah’s vitals may be great, with her oxygen staying stable at 98%, but her newest challenge is having a series of panic attacks. The ALS will bring on increasing spasms — involuntary muscles nerve action connected to her respiratory system. Consequently, this affects our fear of Beulah’s worsening condition. Meanwhile, I try to retain my composure. After these episodes that can last several hours, and being exhausted, Beulah has a deep, relaxed sleep. My emotional state is clouded for much of my day.
We are fortunate to receive spiritual and emotional support from our vast array of friends and our family. While ALS is slicing away Beulah’s strength and we are accepting ALS as a one-way street, seeing Beulah’s bright engaging smile when I awake each morning tells me to endure this journey as long as possible, as vowed the day Beulah and I heard, “you might have ALS.

“I was asking, ‘Why me?’, ’cause I keep an active lifestyle, I eat quite healthily, so I never expected to have a medical condition. And in addition, it is so rare, it’s considered a rare condition – so, why me?”

Toh Kok Peng (@tohkokpeng), 38, father of 2 young boys and part of the Naval Diving Unit, is diagnosed with ALS (amyotrophic lateral sclerosis), a progressive neurodegenerative disease. The harsh truth about this motor neuron disease is that it has no cure and an average life expectancy of 2 to 5 years.

Kok Peng however, remains positive, and maintains a strong sense of optimism to live his life and create more memories with his family.

We spoke to Kok Peng and his wife Wanqi in this intimate interview of how they are coping…

(Singapore, 2nd) After graduating from studying abroad, her beloved daughter was diagnosed with ALS and was paralyzed for a year. Her parents were unwilling to let her daughter "stay" in the hospital for the rest of her life. They took her home and cared for her 24 hours for more than eight years of her life.

Since high school, Zeng Huiyi (32 years old) has studied in Canada. After graduating from university, she continued to study for another year to obtain a professional diploma and stayed there to become a social worker.

In 2014, at the age of 24, she felt unwell and then developed into dysphagia, weak voice, and muscle weakness. She lost 15 kilograms within a year and was later diagnosed with amyotrophic lateral sclerosis (commonly known as ALS), an incurable disease.

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.

RIz is a former Radio and Television Presenter. He was diagnosed with ALS, a type of Motor Neuron Disease (MND) in October 2018. Riz continues to contribute to the community in his own unique ways, especially in creating awareness for MND and ALS.

He was featured in Mediacorp’s CNA938 and has several articles in SPH’s Berita Harian most recently in February this year, sharing his experience using Assistive Technology to communicate. He was also invited to several motivational talks to share his experience.

An Interview by Sidney Kumar (The Create Don't Hate Podcast)

"I lost contact with Kok Peng after university but we remained FB friends throughout. It was only recently that i saw him post about his diagnosis and condition. What really inspired me was his positive mindset and perspective towards life. There is no cure for MND and ultimately all patients will require a caregiver as they lose most of their bodily function. " - Sidney Kumar (extracted by Spotify: The Create Don't Hate Podcast)