EMPOWERING TESTIMONIALS

Life is full of obstacles and adversities, we look into the eyes of our friends, family and client to bring you their stories. Each one with a different beginning and ending; all of which, an unexpected journey.

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What matters is that life goes on no matter what. Survivors and family members have to live on through the trauma.

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While financial planning will not prevent life uncertainties, it can help mitigate material struggles. Money can buy options for treatment, or just time spent with family. Small victories as such, empower people to go on and live bravely.

JOCELYN

Living with NMO

Can you describe your life before NMO? Lifestyle, Work, aspirations etc?

I was a go-getter before NMOSD. I worked in the learning and development field, particularly specialised in hospitality and service sectors. I aspired to be a learning and development consultant. Being a family oriented person, I spend most of my time with my family. Besides family and career, I’m pretty much a foodie, a traveler and a pianist in my own bubble.

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What is NMOSD, is there a cure? How did you find out about your diagnosis? How did NMO changed your life in terms of Health, lifestyle, finances, work, outlook of life etc?

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Neuromyelitis Optica Spectrum Disorder

(NMOSD) is extremely rare, affecting between 0.052 and 0.44 in every 100,000 people worldwide. It occurs when the immune system mistakes normal tissues of the central nervous system as being foreign. As a result, the immune system attacks these tissues, making proteins (called antibodies) and recruiting immune system cells that can harm otherwise healthy parts of the central nervous system. The attack targets the nerves of the eyes, spinal cord and brain. It can lead to accumulating, permanent neurological damage, visual impairment and disability, and in some cases death. Because NMOSD is a progressive disease, symptoms continue to build with each relapse.

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There is currently no cure for this rare autoimmune disease.

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My presenting symptoms were intractable nausea, vomiting and hiccups for a month. My bowel movements were affected and I felt numb from neck downwards. Right after, I lost my hands and legs sensations and had bowel incontinence. My head was constantly in an electric shock mode (painkillers didn’t help) and I suffered uncontrollable spasms and seizures. I went to two private hospitals but there were no findings due to the complicated and unsettling symptoms. I was finally diagnosed in a government hospital after going through extensive examinations. Such tests included blood tests, lumbar puncture (spinal tap), and magnetic resonance imaging (MRIs). 

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I have never felt more grounded and connected to life ever since. Before sickness, I was conditioned to find happiness in material things, riches, titles, accomplishments, people and whatnot. With sickness, I’ve had many losses. Because of the losses, I’ve been able to tune myself into seeking happiness from within. I’m able to introspect and feel contentment from the smallest things (sometimes nothing). Much of the joy now comes from celebrating life with my loved ones. They aren’t things. By reminding myself regularly that all things will come to an end, I’ve started to live my life as wholly and unreservedly as possible, and this will always be a work in progress until my time is up.

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Did/ Will having any insurance payout/ benefits make a difference to your treatment options, mental health, financial health etc? 

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I personally feel that insurance payout and coverage can ease the financial burden as my treatments are costly and lifelong. I am not able to work full time due to my daily symptoms and condition hence having insurance provides some kind of financial security and support. Because of this, I can focus on healing and in other aspects of my health rather than stressing about finances. 

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Having said that, I know there are patients who cannot afford to buy insurance and as a result they don’t have the luxury to rest. Many have to work extremely hard in order to pay off their medical bills. I can also empathise with people who have to give up on treatments because they do not have sufficient financial support. 

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If you could turn back the clock, what would you have done differently with your life? Hobbies, work, family, finances? 

I would worry less and not sweat over the smallest stuff. I would probably start my own family earlier as I am not able to conceive now. 

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What do you think will be your greatest challenge moving forward, or what are your plans for the future?

The greatest challenge will be having a quality of life, something as simple as getting out of bed without pain or with energy to live the day. There is just too much to manage - daily symptoms and side effects from treatments. 

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With a chronic illness like mine, it is difficult to have plans for the future. Every hour is different, every day is unpredictable and the pain level is ever changing. Henceforth, I stopped making plans. I constantly remind myself to live in the moment and be absolutely present in things I choose to do. 

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To be grateful in light of this critical illness has been such an eye opener for me. I will continue to find the good in each day whether it’s small, like a rainy weather when it’s too humid, or big, like being able to survive through all the pain.

WILLIAM

Surviving GBS

Can you describe your life before Guillain Barre Syndrome (GBS)? Lifestyle, Work, aspirations etc?

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I was a Husband, a Father of two, a teacher. I led a normal life, and loved teaching. In terms of lifestyle, not the healthiest with late nights and early starts, meal times that are erratic. Hardly exercising. 

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What is GBS, is there a cure? How did you find out about your diagnosis? How did GBS change your life in terms of Health, lifestyle, finances, work, outlook of life etc?

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Guillain Barre Syndrome (Ghee-Yan Bah-Ray) is an autoimmune neuromuscular disorder. In essence, your immune system attacks the nerves, and as a result, paralysis of legs, arms, breathing and face. It is rare, affecting 1-2 per 100,000 people, and patients have different experiences, ranging from tiredness to full on paralysis. Fortunately, it’s an acute condition that affects most people once. Unfortunately for me, I was in the small minority (less than 5%) who had a recurrence.

Because it was my second round with it, I detected similar symptoms as my first round, and made my way to the hospital. Basically, I felt tired, tingling in my feet, numbness in my face. 

GBS does not have a medical cure; it depends on your immune system stopping the attack, and your nerves recovering. Some treatments have been shown to speed up this process. For me, I was intubated for 10 days, and spent 14 days in ICU. I took another 26 days in normal ward and therapy to get well enough to be discharged. In comparison, my first episode was a 6 day intubation with a 4 day recovery. So even my two episodes were different. And for others, there are permanent disabilities; including inability to walk well. 

It changed my outlook. I started to live more in the now; I started to worry less about how fast I could be promoted, but looked more at doing my daily work well. I started realising that the condition was a reminder to take care of myself and my family; they matter more than anything else. I started to be more deliberate in my time with my kids, just being present with them.

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Did/ Will having any insurance payout/ benefits make a difference to your treatment options, mental health, financial health etc?

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Yes. I didn’t have to worry about the bills. I was covered; the medical treatment (infusion of immunoglobin) was about $10 grand. I knew the insurance would cover, so was ok to sign for it. It helped me realise that when financial concerns were taken out of the picture, you could focus on the recovery. And when you are sick, especially with severe conditions that threaten many aspects of your life, taking out financial worries is very powerful in allowing you to focus on recovering. I had to learn how to sit, learn how to eat, learn how to shower, brush my teeth, wear clothes. I even forgot how to walk (I had to actually remind myself to move my legs).

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If you could turn back the clock, what would you have done differently with your life? Hobbies, work, family, finances?

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I would choose to be more present in every day, every moment. I would exercise more, be less upset over minor issues. It doesn’t mean i would work less or reduce my workload, but the reality is health is not something we can control (beyond a limit) and we should still aim to live a full life everyday.

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What do you think will be your greatest challenge moving forward, or what are your plans for the future?

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I am fully recovered; whatever remains of the condition I can deal with so I am not considering the impact. My greatest challenge is living a life balancing both the need to avoid unnecessary risks to my health and living a full life. While it is suspected that viruses do trigger this condition, it is also true that I can’t prevent a third round.

My plans moving ahead is to continue to pursue a worthwhile life. I continue to help people, continue to grow as a person. I am more careful; taking time off once I fall a bit sick, in order to recover. My plan is not to allow the illness to scare me, scare me into hiding, but to live life fully as far as i can. I am thankful I do not have severe lingering physical scars.

AGNES

Amputee to an Enabler

Can you describe your life before your road traffic accident? Lifestyle, Work, aspirations etc?

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I had just graduated from university. I felt that I had finally gained independence, I was a young adult. I had a career and was looking forward to build up the career. I was full of dreams and aspirations, and eager to take on the world.

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What happened? How did the accident changed your life in terms of Health, lifestyle, finances, work, outlook of life etc?

In 2003, when the world took on SARS, I faced the greatest challenge of my life. 

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On one fateful night, 9 Jan 2003, I was on my way home as a pillion rider on my friend’s motorbike. While making a right turn at the traffic light junction near home, we were hit at the side by an oncoming car. I was thrown off the motorbike and my left foot was severed on the spot.

I had multiple fractures on my ribs and left leg. My left foot was so badly crushed that the doctors could not re-attach it, and the only solution was an amputation.

I found myself in the high dependency ward for about 4 more days, and spent another 19 days in the normal ward before I finally went home. But life after amputation changed drastically. I felt my world come crashing down.

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The physical recovery was difficult, especially as Singapore was battling SARS. My Rehab Centre, the Artificial Limb Centre, was located at Tan Tock Seng Hospital, which was the main quarantined hospital for SARS Patients. That meant access to the rehab centre was next to impossible as they closed off all non-essential services to fully take on SARS.

It took more than 6 months to be able to get my 1st prosthesis. That marked a change because I regained mobility. I was able to learn how to walk! I was able to ditch the crutches and wheelchair. As an adult, I never thought I had to relearn how to walk.

But while my physical recovery was difficult, it was my emotional and mental recovery that took a lot more effort. The loss of the leg affected me mentally in ways I was not prepared for. 

Before, I used to check myself from head to toe prior to leaving home. After the accident, I found myself in front of the mirror, staring at the emptiness where my left leg once stood. 

I lost the independence I treasured; I was dependent on the family to help with basic chores such as getting a cup of water from the kitchen, or holding me up when I tried to stand. 

I was, and still am, an outgoing person. I could not stand staying at home the whole day. Short walks around the neighbourhood brought me relief from being stuck indoors. But after the accident, this simple act became an impossible luxury.

My body became a physical oddity. Strangers would come up to my parents when I was with them, and in front of me, ask what had happened to their daughter. Good hearted uncles and aunties would stare and unconsciously do a double take to confirm that I was indeed missing one leg. I felt like an outcast.

My friends and fellow public servants in the ministry helped tremendously; they raised at least $13,000, which was an immense financial support for me and my family. Their generosity supported me, helping to pay part of my medical expenses.

My family savings were impacted negatively as a result of the accident; I was unable to earn an income, I had to rely on them to foot my medical bills, and I had to live off them. I felt I was no different from a leech.

Did/ Will having any insurance payout/ benefits make a difference to your treatment options, mental health, financial health etc? 

Having insurance payout would have given me more choices of prosthetics. For example, at that time, it cost about $4,000 to $5,000 for a prosthetic leg suitable for walking comfortably. An additional $2,000 - $3,000 would allow for an adjustable prosthetic foot suitable for high heel footwear. But to have a leg to support running, it would probably cost at least $18,000 and above. Additional costs include maintenance, and the leg will need replacement after a few years of use. 

Given that I was not as physically abled as before, with an operation scheduled every year for the next 4 years, being employed and having an income was of paramount importance. And I was fortunate that I could continue to work. I met a fellow patient who had lost a leg, and as a result of the physical challenges, he lost his job. Disasters like this can have long term implications on life.

After the accident, life was no longer about dreams and aspirations. Survival was the key. Having a job, getting an income, and making sure that my employers can empathise with the need of a staff having to go for frequent medical appointments/ rehab/ operations became the focus of my life.

If you could turn back the clock, what would you have done differently with your life? Hobbies, work, family, finances? 

I had life insurances and endowment plans then, and just like anyone else, I believed that I had spent a lot of money on insurance. What I failed to consider was whether I was spending on the right policies. If I could turn back the clock, I would find out more about my insurances and pick up a hospitalisation plan and personal accident plan. I would also have been more careful with my money and set aside more so that I had a buffer for rainy days.

How has life changed for you since the amputation and what sparked the difference.

It has been more than 17 years since I lost my leg. I could have died in the accident that night, but I am thankful that I only lost a leg. Clearly, I was given a 2nd chance in life.

Over the years, I had people telling me how good a walker I was, as I walked without limping. Well-meaning people advised me to dress up with long skirts or pants to cover up the leg, so that no one could tell that I am disabled. For years, I heeded the advice; I wanted to hide my disability. I wanted to avoid the unwanted stares, and the conversations that revolved around sympathy. In reality, I was hiding from myself. 

It took me many more years to fully embrace myself and my body, to have the confidence to wear shorts and heels again. To emerge from hiding, and to come out in the open, to stand tall and shout “Hey, there is nothing wrong with me, with being physically disabled. I do some things differently from others, but that’s all. I am still who I am.” 

After I accepted myself, I accomplished feats that I never thought possible again. I run, I swim, I rockclimb, I hike. I even ventured into theatre acting. Nothing stops the body, so long if the mind believes. 

I was not a beneficiary of insurance, but I was lucky to be a beneficiary of love and kindness by many generous people.

I left the public service 5 years after the accident to set up my own business, before becoming a financial adviser.

Am I a believer of insurance? Definitely. But more importantly, it is about being rightly and responsibly insured. I went through the ordeal of saving a penny and losing a dollar. Now, I subscribe to being penny wise and pound wiser.

My attitude towards life: We only live once. Make each day count.