Speech at RehabTech Asia Media Conference 29th Jan 2013

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I was invited by Hocoma to give a short speech at RehabTech Asia’s media conference on 29th Jan ahead of the actual conference from 27th Feb to 1st Mar. The company wanted me to talk about the experience of using their ArmeoSpring therapeutic robot, which I also wrote about previously. Here’s the speech minus some off-the-cuff remarks:

Good Morning.

Zen [MD of Hocoma in Singapore], I don’t know if you remember, but I met you When you were still running START Centre and I was in EDB.

Dr Kong [chairperson of the RehabTech Asia conference but also my doctor], I will see you in the hospital next month again.

My name is Hawyee. I’m a futurist and a strategist with Singapore’s Ministry of Trade and Industry; And I’m also a stroke patient. It is in that latter capacity that I’ve been invited to share my experience with you today. When I was still with the Economic Development Board, I was responsible for the robotics industry. I met Hocoma at a medical conference in Tan Tock Seng Hospital at a time when the company was preparing to introduce its rehabilitation devices to Singapore. Little did I expect to be a beneficiary of these a few years later. And they say Karma isn’t real.

I was 30 years old in May 2011 when a malformed blood vessel in my brain ruptured without warning leading to a loss of my left sensory motor function. Immediately after the stroke, I couldn’t walk or even sit up by myself. Now, one and a half years later, I still have significant weakness on my left side of the body, but have regained independence in everyday life. I’m back at work and I can get to most places by myself by taking cabs. I was probably one of the first patients at Tan Tock Seng’s Centre for Advanced Rehabilitation Therapeutics to use the ArmeoSpring rehabilitation device.

So far, I’ve had almost fifty training sessions with the ArmeoSpring, which is complemented with conventional physical and occupational therapy. Let me share with you some of my experiences using the ArmeoSpring.

Because the ArmeoSpring provides arm weight support, it allowed me to start exercising even when I had very little active movement. When I could move better, I asked for the support to be reduced so that I could initiate movements more and more by myself. Based on the movements I wanted to achieve, my therapists would choose the exercises together with me. Furthermore, the software provided scoring that kept track of how well I could move. Another benefit of the training with the ArmeoSpring was that it helped me reduce unnatural, compensatory movements, such as twisting of the upper limb when attempting to raise it.

For me, it’s extremely difficult to differentiate physical improvements that are part of the body’s natural recovery from the ones attributable to therapy. However, I have noticed the following: although my level of motor ability is still very low on the left side, but I’ve experienced an increase in the smoothness of movement. Where previously movements were jerky, they are now more controlled even if not smooth. Over the course of a year, I’ve noticed a better connection with my left arm or a better proprioception. The exercises required me to pay attention to the games on the computer screen while moving my arm intentionally. This forced me to not look at my arm and allowed me to practice paying attention to the sense of movement and touch, even though those senses are impaired.

Overall, my experience with the ArmeoSpring has been positive and it will definitely continue to be part of my therapy program. To help make such therapy affordable and accessible for more people, last year I worked with Tan Tock Seng Hospital’s charity arm to set up and raise funds for the Rehabilitation Assistance to Cure, Heal, and Enable Lives, or RACHEL, fund that will bear part of the cost of therapy for patients at Tan Tock Seng’s rehabilitation centre.

I hope that I will also get to work more with Hocoma and the healthcare providers to further improve patient’s experience, because I believe there is still potential for improvement. This could be done through close collaborations between clinicians, patients, and companies like Hocoma. Hence, I am glad that RehabTech Asia will offer an extensive platform for various stakeholders to drive forward innovative and patient-tailored therapy solutions.

 

Channel 8 interviewed me for a soundbite after the speech, and this ended up getting a hilarious translation (something about repeated sex) because the soundbite was in English:

Screen Shot 2013-02-05 at 8.13.18 PM


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Stroke victim sets up rehab fund (Sunday Times article on 06/01/2013)

Original article here in the Sunday Times (alternatively, PDF version here). I’m archiving it here on my blog for my own reference:

Friendships forged at hospital spur civil servant to help needy patients pay for occupational therapy

— ST PHOTO: ASHLEIGH SIM

“I started to see that everybody was not as well off as I was, even though I am only middle class. I wanted to help people get back their independence.

MR AU YONG HAW YEE, who set up a fund to help pay for occupational therapy for needy patients. He suffered a stroke last year and now walks with the help of a cane.

By Tham Yuen-c

Civil servant Au Yong Haw Yee woke up from brain surgery groggy and tired last May, and one of his first complaints was the lack of air-conditioning in his Class B2 ward.

Suffering the after-effects of a brain injury caused by a stroke, the 30-year-old was not his usual self, and the absence of cool air so bothered him that he demanded to be upgraded to a Class A ward.

His father did not agree, fortunately. Because in the next few weeks, the younger Mr Au Yong would end up befriending the other patients in the Tan Tock Seng Hospital ward, who like him had lost the use of parts of their bodies after suffering a stroke.

These friendships and others he forged at the hospital’s rehab centre in Ang Mo Kio inspired him to set up a fund to help pay for occupational therapy for needy patients.

“I started to see that everybody was not as well off as I was, even though I am only middle class,” he quipped.

Most of the stroke patients he met were middle-aged. There was also a diabetic amputee and a man with a spinal cord injury. Many were resigned to a life of immobility.

At a subsidised rate of about $80 a week, physiotherapy can be expensive, even for middle-class patients.

“I wanted to help people get back their independence,” said Mr Au Yong, who walks with the help of a cane.

As soon as he was discharged, he began setting up the fund. Although he had lost the use of the left side of his body and had difficulty speaking, sitting, standing and walking, he did not let his disabilities stop him.

He posted a letter of appeal on Facebook and set up the fund with $25,000 of his own money. Within months he had raised some $45,000.

Named Rehabilitation Assistance to Cure, Heal, and Enable Lives, the fund will pay for needy patients at the TTSH Centre for Advanced Rehabilitation Therapeutics.

It provides rehabilitation services using robots that cost up to $1 million apiece. Mr Au Yong had been going for occupational therapy there since he was discharged.

“You’re really like a child and you have to relearn everything,” he said. After just 3 1/2 months of intensive rehab, he returned to work as a strategist at the Ministry of Trade and Industry.

Even physiotherapy, however, could not stop him losing the use of his left hand, as the nerves were so badly damaged.

The two things he misses most, he says, are riding his motorbike and playing on his Xbox game console. He can no longer do either. But Mr Au Yong takes it in his stride.

“I bought a mouse with 12 buttons and a foot pedal so that I can play games on the computer instead,” he said. “I have completed four.”

He is also learning to write with his right hand and has started a blog about his experiences.

Ms Doreen Yeo, an allied health manager at the TTSH rehabilitation centre, said many stroke patients are unable to articulate their difficulties. She added: “For Haw Yee to be an advocate is very good. It helps to promote awareness and helps therapists understand the difficulties that they face.”

The hospital is spreading the word about the fund to doctors and therapists so they can refer patients. So far, no disbursements have been made.

But there has been one “beneficiary”. The fund’s acronym, Rachel, is the name of Mr Au Yong’s girlfriend of three years, who he will marry before 2015.

“I told her that it’s my wedding present to her, so no need to buy a ring,” he quipped, flashing a grin.

yuenc@sph.com.sg

For more information on the fund and how to donate, go to http://hawyee.com/roadtorecovery/donate-to-rachel/


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Raising RACHEL

A friend asked if I could write about the “gritty” experiences of being a stroke patient (living with disability, learning to walk/dress/eat, etc). I promised her that I would. But I want to get one last “non-gritty” post out. In this post, I want to record down the process that I went through to set up the RACHEL fund.

I think it was probably in October last year–a month after I went back to work, that I received a letter from one of my insurance companies. My father, during my hospitalization; and then I, after I was discharged from the hospital in July, had been having a contentious to-and-fro with this company on whether they would pay out on my policy. The letter I received that day stated that they would, after my rehab doctor had written in to support my claim.

The policy was a small one and the payout wouldn’t be a lot of money–not even enough to buy a COE for a car (even then), and I wondered if there was something more meaningful that I could do with it than just put it in a bank at sub-1% interest. At that point, I was still very affected by the things I had observed during my stay at the hospital. My father had, wisely, chosen to put me in a subsidized ward class even though my insurance entitled me to an unsubsidized class. The hospital experience for me was therefore similar to my National Service experience in that it was a great leveler. I’ve never made a conscious choice to just interact with people of a similar socio-economic class, but I definitely met people from more varied walks of life in the 3 months I was hospitalized than in the four years had worked in EDB. And it stuck with me how many of the people I met at the hospital seemed to have trouble coping with their medical bills. There was the middle-aged man at TTSH’s main site that told my father he simply had no money to pay his medical bills, and so would just leave the reminders unopened. There was the elderly man, hospitalized for a second stroke, who boasted about how good a cook he was, who could not be discharged because his family simply couldn’t take care of him.

Tegan (one of the occupation therapists with the Acquired Brain Injury team) and me on the day of my discharge. In case you’re wondering, yes, we are doing the ‘Kate Spade’ pose.

I was finally discharged in July after 3-and-a-half months, but I still had to go back to the community hospital for therapy. The outpatient service could offer me a slot (to see both the physiotherapist and the occupational therapist) only once every two weeks. I don’t know if that was the standard or if there was a shortage of therapists. On my second visit there, my OT asked if i would like to transfer to TTSH’s new Centre for Advanced Rehabilitation Therapeutics (CART) where I could try out some new robotic equipment. The only downside would be that I would have to pay unsubsidized rates–about twice as much. I thought I could afford it, so I agreed. It turned out that at CART, I could come in for therapy at least twice a week!

So here I was, 3 months later in October wondering if I could do something better with the money. I decided I would put some of it aside, but I will also take out a chunk to help other stroke patients get access to the same level of care that I was fortunate enough to be able to afford. I also wanted to do something that would help me remember the kindness and the care shown to me my the doctors and the nurses at TTSH.

I asked my girlfriend, Rachel, about setting up a fund. I didn’t know if she would agree since we still had many expenses to come in getting our life together started.

“Go for it”, she said.

I then texted my dad to tell him that I wanted to take $25,000 to set up a fund for stroke patients. He was working on a project in Indonesia at that point. I had inherited my father’s temperament and outlook on life, and I had a pretty good sense that he would be supportive, but I was still nervous he would say it was a stupid idea given that I was still spending about $2,000 a month on my own medical costs.

“Go for it”, he said; reminding me to set it up with the right processes so that the money won’t be mismanaged.

Over the next few months, I slowly worked my way through TTSH’s hierarchy and met with the head of their charity arm–the TTSH Community Charity Fund (CCF). She told me that a subsidiary fund would be workable.

I discussed with Rachel what to name the fund. Since both ‘Rehabilitation’ and ‘Rachel’ are spelled with ‘R’, I thought it would be fun to have a name that contracted to RACHEL. We finally came up with Rehabilitation Assistance to Cure, Heal, and Enable Lives. It was fitting. Rachel was there for me during one of the most trying periods of my life. She came to visit me every day at the hospital after work, even though she was coping with a promotion to middle management at the Singapore Tourism Board (STB) and a new portfolio.

Next came the fundraising. I wrote a note on Facebook which was soon widely shared by my friends. One of my university-mates, Zhensi, even started a started a pledge on give.sg for her 10-km runs in the Standard Chartered Marathon Singapore 2011 on 4 Dec 2011 and the Walt Disney World Half Marathon on 7 Jan 2012. I also wrote to my ex-colleagues at EDB to let them know I was raising funds.

I was very touched by the many generous contributions that came in from my friends. a number of cheques were for 4-figure sums; One even came from a secondary school classmate who just had her first kid!

By the time I stopped collecting the cheques on behalf of TTSH CCF in Feb 2012, a total of more than $42,000 had been collected (including my own contribution). Some donations still trickled in to me afterwards,which I passed to TTSH without tallying. I think the final figure would have been somewhere near $45,000. I estimated that this should be enough to support 10 patients for about a year’s worth of therapy at unsubsidized rates.

TTSH CCF has spent the subsequent months doing the real hard work of formalizing the processes, criteria, and setting up the chain of approval, etc. Most of that has been done and they are in the process of publicising the fund to the doctors and medical social workers. I’m hopeful we’ll see our first patient in the beginning of 2013.

If you would like to make a donation to the RACHEL fund, I’ve written a ‘sticky’ page with the details. If you’ve decided to help, Thank you!

 


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Psychological resilience – a presentation at In Her Shoes

Hawyee here. This is an expanded version of a talk I gave at on 18 November 2012 at In Her Shoes, a festival of art and music that supports the fight against cancer. My five-minute talk was part of a larger presentation by Benjamin Yang, one of the directors of the Positive Psychology Centre, on The Science Behind Our Happiness.

After my stroke in May 2011 in which I lost the use of the left half of my body, in my journey through the various medical establishment, in setting up the RACHEL fund and then this blog subsequently; I had the opportunity to talk with many fellow travelers and stroke patients, and the various ways people reacted to and coped with their traumas became a nagging puzzle for me.

In my case, I lost the use of the half of my body that included my dominant hand, and still managed to get back to work within 3 and a half months of the stroke, so I was curious as to why some people whose disabilities were less serious than mine nevertheless seemed to be stuck and unable to move on.

I first asked my occupational therapist about this puzzle seven months after my stroke. He was the principal occupational therapist at Tan Tock Seng Hospital’s Centre for Advanced Rehabilitation Therapeutics (CART), with 14 years of experience under his belt. He explained to me that disability was unfortunately never a purely physical phenomenon, and that the extent of disability depended very much on the patient’s psychological resilience and reaction to his/her condition.

What is resilience?

There’s been a spike in interest in resilience research recently, driven by several high profile natural disasters (eg Hurricane Katrina; the Tohoku earthquake, tsunami, and subsequent nuclear meltdown at Fukushima), and, more recently, the near collapse of the global financial superstructure in 2009. Most of this interest is in the resilience of systems, but since systems are ultimately made of people, I think the smallest meaningful unit of analysis is the individual, and I hope to share with you some characteristics of individual resilience that I’ve uncovered through research and personal observation.

Let’s start with a definition of resilience. Andrew Zolli, executive director and curator of PopTech, co-authored a well-received 2012 book with Ann Marie Healy on resilience. In an interview with The Atlantic Magazine, he explains that resilience can mean different things in different contexts, but two essential characteristics of resilient systems is the ability:

[for] continuity and recovery in the face of rapid change…Among other things, resilient systems sense and respond to their own state and the state of the world around them, compensate or dynamically reorganize themselves in the face of novel shocks, decouple themselves from other fragile systems when necessary, fail gracefully, and have strong local self-sufficiency.

The human body is at once an amazingly fragile and an astonishingly resilient biological system, and one can quickly identify how the human body has many characteristics of a resilient system as Zolli points out.

What I want to share instead in this essay are five traits that I’ve observed to be essential in building psychological resilience. I’ve taken Benjamin’s advice to be as explicit and as unambiguous as possible so that others might benefit when reading this.

1. A sense of purpose

A sense of purpose is important whichever stage of life you’re in. Some people get their sense of purpose from religion. Others, like me, don’t. A sense of purpose doesn’t need to come from grandiose ideas about saving the world, and can come from even simple goals like achieving a certain minor milestone in rehabilitation. Or it can be even simpler, like getting up to go to work at the same time every day. When I was discharged in July 2011, I told my therapist that I would be back at work in September. She advised against it. Looking back, I was still probably a bit too weak to have gone back to work when I did, but the simple goal of having to make it to work and then back home again by myself everyday (even if I was avoiding public transportation) proved to be a strong antidote against just staying in bed and feeling sorry for myself.

Of course, not going back to work so soon in order to focus on rehabilitation also works if you’re the highly motivated sort. My physical therapist tells me stories of his two patients who have not gone back to work yet, but who dedicate 4 hours every day to exercise and are making tremendous progress as a result. This has in turn inspired me to dedicate for 2 weeks’ leave this December to intensive training.

2. Focusing on what you still have, not what you lost

For me, being grateful for what I still am able to do and for minor accomplishments keep me from falling into depression and help me achieve longer term rehabilitation targets. Some patients I speak to obsess with the things they can no longer do, instead of what they could possibly achieve with what they have left. I’ve always been a fan of the (albeit fictional) master improvisor McGuyver from the 80’s television series of the same name. It’s been surprising the number of things I can still do one-handed—for eg taking apart my Apple Mac Mini to install a new hard drive, or (more mundanely) clipping my own fingernails. The only psychological barrier I needed to overcome was an aversion to looking awkward or silly as I struggle [Tip: BlueTac is your best friend when you have to do things one-handed].

In particular, I’m grateful that I still seem to have the full use of my cognitive faculties, even though I’m speaking slightly slower and more prone to frustration sometimes.

When I was first transferred from Tan Tock Seng’s main acute hospital to their community hospital in Ang Mo Kio, the resident psychologist paid me a visit to do an initial assessment. She kept asking me why I wasn’t depressed, perhaps out of concern that I was in deep denial. I found that quite amusing. What she didn’t understand was that I had the good fortune to inherit my father’s attitude of always looking on the bright side of things; which really helped in the recovery process.

3. Non-internilization of others’ perceptions

As one comes to terms with a fresh disability, it’s vital to have a mental distinction between your own self image and others’ perceptions of you. Just because some people might see you as disabled doesn’t mean that you are.

When I was in university, I spoke with my dorm-mate’s Chinese mother about racism in the US. We eventually got around to talking about racial slurs.

“Would you feel insulted if someone called you a ‘chink’?” I asked.

“Of course, because it’s rude,” she replied.

That got me thinking: Isn’t the use of the pejorative ‘chink’ more indicative that the person using it is a racist ass rather than it is denigrating for the person on the receiving end?

Similarly, I’ve observed that some people internalize how others perceive them; instead of interpreting these perceptions as a reflection of the originators’ ignorance—which should be the appropriate interpretation.

4. Availability and acceptance of social support

Human beings are social animals. Unless you’re a psychopath, the need for social interactions is deeply embedded within our psyche; however tempting it might be to think that we are individual supermen or John Galt from Ayn Rand’s Atlas Shrugged.

There’s no shame in seeking or accepting social support, and the act of acceptance of support can even do the giver some good. Benjamin wrote in a short note on Facebook a few weeks back:

Very often, many of us are ready to give. But how many of us are ready to receive? In many ways, the act of receiving is just as important as giving. By receiving, we are in essence an instrument in completing the act of kindness.

5. Optimism tempered with realism

Optimism is tied closely with all of my earlier points. It’s an attitude that helps with all the others. For example, having a positive frame of mind helps when seeking out and when interacting with company; and helps to you to identify and be thankful for the things you still have.

The caveat, though, is that it has to be an optimism that is tempered by a sense of realism. Unrealistic optimism can be extremely disheartening when reality inevitably sinks in.

For his book Good to Great, Jim Collins interviewed admiral James Stockdale, the highest ranking US soldier to be held prisoner during the Vietnam War. Stockdale survived 8 years of torture and lived to tell his tale. When Jim Collins asked him about the prisoners who didn’t make it out, Stockdale said:

“[They were] the optimists. Oh, they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart.”

Stockdale’s answer shows how important it is for optimism to be tempered with realism. In trying to live this value, I think of rehabilitation as a journey of constantly getting better, and not as a means to reach a specific stage of recovery.

[The Stockdale paradox]

Stockdale’s story is in many ways so astonishing that I want to talk a bit more about it here. His ability to combine realism with optimism was so puzzling that psychologists called it the ‘Stockdale pradox’. In an interview with Dr Dennis Charney, a psychiatrist who is looking to find new treatments for depression, Stockdale explained that his source of optimism came from the social support that get got from the other prisoners. Even though they were all in solitary confinement, they worked out a method of using taps to communicate through the prison cell walls. Dr Charney further elaborates:

The Stockdale Paradox really defines the optimism that is most important in becoming a resilient person and that is, when you’re faced with a challenge or a trauma, you look at that challenge objectively. You might make the assessment, ‘I’m in really big trouble.’ You have a realistic assessment of what you’re facing. On the other hand, you have the attitude and the confidence to say, ‘But I will prevail. I’m in a tough spot, but I will prevail.’ That is the optimism that relates to resilience.


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Guest post: Personal account of traumatic brain injury (TBI)

Hawyee here. Bernadette got in touch with me through this blog, and we’ve met several times over the past months for chats and mutual support. This essay, in her own words, is an account of her tribulations of coming to terms, and living with the aftermath of her injury.

People have asked me what it feels like to be in a coma, which I experienced when I was 44 years old. I had what is known as a traumatic brain injury (TBI), and I was put into an induced coma after my surgery. I also want to share a bit on my experience in coming to terms with life again after my illness.

In terms of the induced coma, I can only say that, at least for me, it was mostly great when I was unconscious. I felt no pain, although I did feel uncomfortable sometimes when I was a bit conscious. The scariest part was feeling alone and unable to communicate. Usually there were tubes everywhere—including in my mouth, which meant I couldn’t call out. Because they didn’t want me pulling out my tubes, they also tied my hands down. When I finally woke up, I felt that the restraints were quite unnecessary as I was half paralyzed anyway. I had nightmares while in my coma. I have always had a fear of snakes. In my nightmares, I dreamed that there was a huge white python behind me that was slithering and poised to swallow me whole in one bite from my head to my waist. Apart from that there was no real pain, although I was definitely awake sometimes when the nurses came to wash and change me.

There were times when I was conscious during which I did want to communicate. I wanted to press a call bell to get someone’s attention, but the ICU ward I was in didn’t have that. My husband said he stayed with me all the time, but I don’t remember that. He said he never saw any signs of anxiety on my face, but I did feel comforted when he stroked my arm or held my hand. And I do remember him telling me that I had a brain operation and they were transferring me to Tan Tock Seng Hospital. I think I tended to be a bit more conscious when I heard my kids’ voices. I think I finally came out of the induced coma after about a week.

The one advice I would give caregivers is to try to be more aware of how your perspective is different from your loved one. While he or she is unconscious, you have had time to come to terms with the incident, and you have had some time to prepare to help him or her through the recovery process. It might have been extremely difficult, painful and lonely to wait alone or to be at angry at fate and fortune. For the patient, however, the reality of the situation comes in a rush together with consciousness. He or she is under stress to process everything at once. So please be understanding and allow your loved one the time to absorb and come to terms with the situation. This can take longer that you expect because you have had much more time to think about it.

For most brain injuries, as with most kinds of trauma, the medical literature indicates that depression can be a normal occurrence. My friends tell me I am the last person they imagine to be depressed, and I must admit I was also shocked at finding myself tearing up sometimes and not finding a lot of joy in everyday things that I used to enjoy—like reading. Depression comes with fatigue for me, and I constantly feel like I haven’t slept enough. I read that a person with depression has a “flat affect”. There used to be nothing flat about me, and this is the first time I find that I could possibly use “flat” to describe something about myself. This is another strange occurrence, and the change in my personality was something I had to grapple with.

As a Singaporean , I’ve taken the usual route in life—going through junior college, going through university, getting a scholarship, getting married, having kids, getting promoted, etc. These were the expectations and milestones that I’ve been able to meet at each stage of my life. But with the illness and subsequent depression, my life has suddenly come to a stop. There seems to be no more achievable goals, and nothing even worth trying to set as a future goal. It’s like my time has come to an abrupt end. I used to lead and enjoy singing in the church, but I find that I have now lost my voice. This came as a surprise to me, and I put this down in my journal as my first goal—to regain something that I treasured and was familiar with, even as I was having difficulty rekindling my passion for work and life. This first goal gave me something to work towards. Other things that have helped me in this period have been the support from friends and family, gospel music, and motivational books.

Depression for me did come with thoughts of suicide. However, as a faithful Christian and a rational person, not only do I know that it’s a wrong thing to do, but I also know that there is long term impact on the ones I love–my kids and my family. I don’t think I could really have done it, anyway. After my illness, I find that I now have a phobia of pain. If I think a drawing of blood etc will be painful, I would go into hysterics, which makes the process even worse–and which leaves me feeling even worse afterwards.

The only times I feel truly happy and peaceful now is when I am asleep or spending time with my younger son, who just accepts me as I am and is glad for my presence. We would do silly things like watch TV/cartoons/movies/sitcoms, or play hangman and snakes and ladders, or engage in a bit of roughhousing. I find that I’m most at peace when I’m with him, or that I’m least depressed, or maybe it’s because I would just forget about being sad. Once, when he came to me in tears because his older brother had bullied him and broken his toy, I immediately focused on making him feel better. And that was the magic that made me feel better all of a sudden. I think one possible alleviation for depression could be to find opportunities to care for others who may be in greater need.

I hope this gives you a little insight into coping with depression and TBI.

About the author

My name is Bernadette Sim. I’m a married mother of 2 sons. I was 44 years old when my AVM ruptured on in July 2010. This resulted in a craniotomy. I was paralyzed on my left side but after about 2 months of therapy, I was able to gain back most of my physical abilities, although there is lingering weakness in my left hand and left side of my face, which makes my speech a bit slower and slightly slurred.

As with many others, nothing special or spectacular took place in my earlier years. I went to school did reasonably well from secondary onward  I obtained an SIA scholarship for my university days; was active in church work from secondary school days.

22 July 2010 started as any other day did. My main worry that day was whether it would rain. My organization had planned a team building event–kite flying in the late afternoon, but before then I had several meetings, which was not unusual. The first was a team meeting to clear the air on some staff tensions; followed by a policy presentation to the Permanent Secretary of my division. It was during the presentation, in the middle of speaking, that I felt strange. There was a gushing sound in my right ear and I went deaf for a few seconds; no one else in the room noticed anything amiss. The meeting ended soon after that, and I went back to my office. There was a new pain now. The right side of the face felt pressured. I called my husband and told him I was going to drive home and could he help find a doctor who would see me; I was struggling with the decision for a while as I didn’t want to abandon the team during team building,. But felt something was seriously wrong with my face and with my brain. I safely arrived home safely and crashed on the couch. We managed to find a specialist at Paragon who would see me at 4 pm. My older son, home from school, accompanied us. We went down to paragon at about 3 because we were concerned about the parking situation, and saw the specialist at 4 as scheduled. The doctor did some physical checks on me and did not find anything wrong, but sent me for a CT scan as a precaution since there was a radiographer in the same building, I should go for a routine ct scan; after the scan we waited some time for the results. The receptionist she said that the radiographer was talking to my doctor when my son finally checked with her. That was the first sign that something could be wrong.

When we went back to see the doctor, he told us he was sorry that he had some bad news. There was a small bleed about the size of a 50-cent coin on the x-ray. They had discovered that I had a condition called arteriovenous malformation (AVM), which is a congenital condition that is usually undetected until it ruptures.

He then asked me to admit myself immediately at the nearby Mount Elizabeth Hospital. There, I was prepped for something known as gamma knife surgery–The least invasive option to close the rupture. Unfortunately, it proved unsuccessful and the AVM ruptured badly 4 days after the procedure. I had to be rushed to a hospital where the surgeon gave my husband 30 minutes to decide if he would go in and perform the surgery. The skull cap that they put in for me got infected later and I had to undergo another surgery to remove the cap . In April 2012, I went back to work on a part time basis with reduced responsibilities, and then went back to full time in June 2012, albeit still with a reduced portfolio. I’m not considering replacing the skull cap for now, so I’m basically living with a hole in my skull that is covered by scalp dura. Over 30 titanium clips are still in my brain. These were used to clamp the blood vessels left disconnected when the AVM was removed.


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Presentation at iCreate conference

I presented the following at the i-Create (International Convention Rehabilitation Engineering and Assistive Technology) for a workshop on upper limb rehabilitation and assessment on 26th July 2012. My occupational therapist had 30 minutes to talk about clinical perspectives of rehabilitation robotics and he wanted to include the patient’s perspective as well, so this is what I prepared:

Background

I’m a 30-year-old male who suffered a right frontal parietal AVM haemorrhage on 15/5/2011. 1 year later, I still have significant left hemiparesis of grade 3/5 power, but am otherwise community ambulatory.

Therapy with upper limb robotics

Underwent 4×12 sessions of on the Armeo Spring and 3×12 sessions on the IMT’s Wrist Robot

Hocoma’s Armeo Spring [Source: Hocoma]

The Armeo Spring is a sensor laden exoskeleton that provides partial weight support. Therapy is provided to the patient through the completion of exercises that require the patient to complete specific movements with his/her arm.

InMotion Wrist Robot [Source: Interactive Motion Technologies]

This robot concentrates on rehabilitating wrist rotation as well as pronation and supination. Servo motors provide adaptive assistance if the patient is unable to complete the movements on their own.

Personal observations

Please note that any observations here on the effectiveness of robot-aided therapy are highly subjective, and even the therapists themselves are quite divided on the issue of whether robot-assisted therapy is more effective than conventional therapy or if it justifies the additional cost.

That being said, I did feel that there were movement, sensory, and cognitive improvements in the course of using the machines, although of course these improvements are inevitably conflated with any natural recovery.

Movement – using the Armeo Spring in the beginning was useful in rediscovering the range of possible arm movement because the machine can help to compensate for the weight of the arm when muscular control was very poor, thus allowing me to focus on moving the arm correctly rather than struggling with the weight. Even slight improvements in movement (visible through scores tabulated  during “games”) provided further motivation to train the arm. Towards the end, I did notice a distinct increase in the “resolution” of arm movement–more refined movements and not so much failing about. There was also better isolation of the muscle groups, eg less shoulder movement when I intended to bend the elbow.

Sensory – The Robot-aided therapies were not build to provide sensory rehabilitation, so I won’t discuss that here. But I did notice a significant improvement in proprioception (especially at the shoulder and elbow joints) and in the sense of “connection” with the arm. This could be due to the fact that many of the exercises forced me to move the arm while looking somewhere else (ie the computer screen), which compelled me to pay attention to the proprioceptive feedback from the arm rather than depending on what I see.

Cognitive – After my stroke, I noticed I couldn’t visualize, imagine, or recall movements of my left arm. This wasn’t surprising to me because I knew that the brain uses the same functional areas (that control movements, which in my case was damaged) to simulate movements during visualizations or recollections. Towards the end of my sessions of robot-aided therapy, I was much better able to visualize arm movements, although the muscular control remained poor.

Although my experience on the machines was mostly positive, there are various aspects of the therapy and machine design which can be improved:

  1. The “games” were primarily designed for scoring. For the patients to remain engaged over multiple sessions, they need to incorporate a larger fun element. Either that or design visually different “games” that train the same movements.
  2. The equipment were designed with Western averages in terms of human factors and were not designed to accomodate (often smaller) Asian physiques. Some of the straps on the Armeo Spring in particular had to be modified by the therapists to secure my arm properly.
  3. Session-to-session scoring can vary significantly because of minor differences in how the limb is positioned on the equipment, and this reduces the cross-comparability and reliability of the scores.
  4. The therapy plans and scoring methodologies were not designed to account for large changes in patient conditions because of other concurrent interventions. For example, I went for Botox injections to help with some muscle tone issues, and this caused a significant drop in performance for some of the exercises.
  5. The current robot-aided therapies still required significant therapist presence and intervention to initiate and monitor the therapy sessions. This doesn’t help to free up the therapists’ time to work with additional patients.
  6. The exercises should be categorized according to motions of interest. Currently, exercises are presented as a laundry list and whether the therapists pick the correct exercises depends very much on their familiarity with the exercises. Some categorization would help to speed up the exercise selection process.
  7. Scoring is done for each individual exercise. Although this already provides some good feedback, some consolidated scoring or automatic analysis of which movements are relatively poorer could be even more useful.
  8. I noticed that sensory inputs (eg texture, temperature) can help to anchor the affected arm within the proprioceptive space. I wonder if sensory input during the therapy sessions could help in the rehabilitation of movement.
  9. Visual elements on the screen that provide important feedback could be better arranged. For example, an exercise that trained finger contraction had the bar showing the exerted pressure far away from the visual focus:

    A much better arrangement could have been:

    This would have presented the relevant information near the area where visual acuity was the highest.
  10. As far as I can tell, the programmers adopted linear mappings for sensor inputs to visual outputs–ie:

    This assumes that the patient has equal ease reaching all points within the workspace. I wonder if an adjustable non-linear mapping would have allowed the therapists to target certain movement zones for more intensive training:

This was all I presented that day, but I would be happy to answer additional questions through the commments or email.


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Dealing with disability

In talking to other stroke patients, one thing that was particularly remarkable to me was the very different reactions people had to a disability. I spoke to my occupational therapist about it, and he remarked that disability is never a purely physical condition, but is a combination of actual physical disability and the person’s psychological response to the disability.

For me, I lost almost all sensory-motor function on the left half of my body. It was so bad I had trouble just sitting up straight after my surgery, and standing up was out of the question.

To some extent, functions can recover as the brain recruits non-damaged areas to replace lost functions through a process called neuro-plasticity, but that process has its limits, and there are early indicators of the possible extent of recovery.

About 2 months after my stroke, the senior consultant in charge of my rehabilitation team at the community hospital held my left hand as he gave me the bad news.

“You have basically a 0% chance of recovering dexterity in your left hand,” he said, solemnly.

I didn’t know how to respond, so I just said, “Ok, loh.” [For those who aren’t local, “loh” and other words like “lah and “leh” are modal particles in Singaporean slang–meaningless words in themselves, but which flavour the spoken sentence and highlight the mood of the speaker. In this case, “loh” indicated resigned acceptance.]

“‘Ok, loh’?” he asked. “That’s all you have to say?”

“What do you expect me to do? Cry?”

In reality though, the truth only sank in slowly over the next few months as I came to accept that there were certain things I would never be able to do again, like my favourite pastime of riding my motorcycle.

In coping psychologically with the physical disability, I was fortunate to have inherited a “keep calm and carry on” attitude from my father, which meant I didn’t spend too much time agonizing over what I couldn’t do and the physical functions I had lost, and more time figuring out how I could do as much as I used to be able to do.

My physical disabilities

My actual physical physical disabilities (and current extent of recovery, one year later) are:

  • Loss of use of left leg (currently mostly community ambulatory, albeit with a walking stick).
  • Loss of use of left hand (currently able to perform gross movements using the shoulder and elbow, but no real useful functions because I am unable to open my fingers; only clench them).
  • Weakness in left trunk muscles (currently still slouching more than before, but otherwise able to maintain an upright posture).
  • Slack facial muscles on the left half (currently still unable to perform some facial expressions, although I’ve stopped dribbling when I eat–what a relief).
  • Extensive loss of sensation (touch, temperature), proprioception, and kinesthesia (often confused with proprioception, but is more accurately the sense of motion). I’m lucky not to have lost the sense that my left limbs are my own, but the sense of connection and ownership is definitely weaker than for the unaffected right side (currently, some (still very vague) sensation is starting to recover from proximal (closer to the body’s centre line) to distal (further away)).

Coping strategies

I’d like to list down a few coping strategies that were particularly helpful for me that might prove helpful to anyone else in a similar situation:

  • Accept that a terrible thing happened, whatever the cause. Speak to whoever you believe in and then accept that you have to move on. For me, I wrote in my second post “Why Bad Things Happen to Good People” that I was an atheist, so my coping strategy of accepting it as a case of a bad roll of universal dice might not be for everyone.
  • Nevertheless, don’t internalize other people’s perception of yourself. If other people look down on you as a result of your disability, it is a reflection of them, not you. When I was studying in the States, an American-born Chinese asked me about racism and if I would be offended if someone called me a “chink”. I told her no, because that just shows the person who uttered the phrase to be a racist asshole, and I would pity him rather than get angry. The same applies here. You’re going to run into some inconsiderate people, but you shouldn’t let that affect how you feel about yourself.
  • Be prepared to fight for every inch of recovery, but believe that things will get better. Dealing with disability is tough, and trying to recover whatever function you can is even tougher. Neuro-plasticity is helped by exercise. In the days after I was first discharged home, it took me half an hour to limp the hundred metres from one apartment block in my estate to the next, and being able to ever walk normally again seemed hopeless. I kept trying to walk and also practise climbing the stairs, and within the month I was climbing 25 floors’ of stairs up and then down again. Fortunately, having survived being in a Guards unit while in NS, I had a pretty high threshold for physical suffering. So while the exercise was exhausting, I kept telling myself that at least it wasn’t as bad as during NS.
  • Be nice to your caregivers and your therapists. A bit of politeness makes it easier for people to go that extra bit for you, and however bad it is for you, recognize that the people around you can suffer too.
  • Participate actively in your own therapy. Nobody knows what is most important to you like yourself. If your therapy isn’t targeting something that you want think is useful, speak up. Each person’s lifestyle is so different that it’s impossible for therapists to be able to design an effective therapy plan without your input. People tend to over-estimate how much others can read their minds. Make sure this isn’t a mistake you make. During my own therapy sessions, I usually give a running commentary on which movements I find difficult, how I’m feeling mentally and physically, and this has been very helpful to my therapists in helping me target the things I want to do.
  • If you’re lucky enough to still have a job, talk to your supervisors honestly about the changes to your workplace and workload that you need, but also be mindful that he/she has to be fair to other employees as well.

The above are the main coping strategies I can think of, but feel free to ask me (through the comments or email) specific questions if you have any.

[Edited 17/7: This article has been cross posted at the Singapore Doctor’s Directory]


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Thinking with your hands – reflection on embodied intelligence

Where is thought located? To us in the modern age, the obvious answer is the brain. But let’s pretend we don’t have the benefit of modern knowledge; Where is the seat of thought? It certainly doesn’t feel like the brain. Thought feels very visceral–how your heart races or your gut wrenches, which is why the greeks thought thinking was done with the heart or the gut. Then up until very recently, scientists were evolving towards the idea that thought or intelligence was sequestered in the brain, and artificial intelligence (AI) researchers worked with a very disembodied view of intelligence, designing thinking systems independently of their physical embodiment. But this view has proven to be too simplistic.

As far as I know, Swiss AI researcher and author of  How the Body Shapes the Way We Think Professor Rolf Pfeifer was the first to propose the concept of “embodied intelligence”–that the understanding of intelligence cannot be divorced from the embodiment of the intelligence and the context of its environment. A mechanical engineer will tell you that if you want to build a robot fish that moves in a 3D environment, you will need at least 3 degrees of freedom (DOF) or 3 channels of control. . Preifer’s team, however, built a fish that only has one degree of movement–wagging its tail, that nonetheless can navigate in a 3D space. The fish is denser than water, so it sinks naturally. However, its aerodynamics causes it to rise when it’s swimming forward. So the fish can move up or down in water by wagging its tail faster or slower. It also steers by wagging its tail to one side of the other. It’s fascinating to watch it swim–the movement seems eerily organic.

By extension, a lot of seemingly complex behavior is nothing more than nature cleverly constructing our bodies to interact with our environment. For example, running is a highly complex task; If we were asked to actively plan each step, we wouldn’t have the cognitive capacity to do it. The complexity of running is tackled by decentralizing the task. The rhythm and the walking pattern is handled by a central pattern generator located in the spinal cord,  shock absorption is engineered into the materials and structure of our musculature; only a small portion of very high level processing and coordination is actually handled by the brain.

Extending further from this view, I realized after my stroke that human beings actually depend a lot upon interactions with our environment to undertake a lot of tasks that seem purely cognitive. I was a left hander, and I lost the use of left hand in the stroke. This lead me to realize how much I depended upon my external environment for thinking. Writing, doodling, drawing, taking notes, and other ways of manipulating the environment all had functioned as a sort of external computational space that complemented my thinking process. I’ve had to “think” a lot slower as I have not yet learned to write with my right hand, and I’ve had to rely a lot more on my memory now that I can’t take notes. So even though I am not obviously cognitively affected by the stroke, a broader view informed by the perspective of embodied intelligence shows that stroke patients can’t help but be forced to “think” slower even if cognition is not affected.

All these examples go to show that our understanding of thought and cognition is far from complete. Science still manages to surprise us frequently. Some recent research has shown (as highlighted in the radiolab episode Guts) that something as remote from the brain as the health of the bacterial colony in our guts can affect our ability to cope with stress!


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Why bad things happen to good people

Sunday 15th May 2012. Something was very wrong. I couldn’t feel the fingers on my left hand. I was in the parking lot and I had just dropped the keys to my motorcycle on the ground. I don’t remember the keys sliding out of my fingers. Just moments ago, I tried to greet a passing neighbour and couldn’t–my speech was slurring. I sat on the ground. I needed to figure out what was wrong. I tried to recall something I learned on the medical drama House MD a few weeks earlier:

Face–numbness on the left side.

Arms–I tried raising both arms in front of me. The left side felt weak.

Speech–slurred.

Telephone–I had to get help! I was having a stroke.

I stood up to remove my helmet. That was when I keeled over and fell on the ground. Two Indian grounds keepers came running and carried me a few metres to the security guard house. They put me on the sofa and pried off my helmet. That’s when I started vomitting into blue plastic bucket that had materialized in front of my face. The security guard asked me which unit I was from. “Fifteen-o-five,” I heard myself say.”Call ambulance! Right brain stroke!” I insisted over and over.

I don’t remember much of  the next ten days, just snatches of images as I drifted in and out of consciousness. My brain was under pressure from the blood clot and was displaced to one side, and so didn’t function very well.

The first clear memory after that was Auntie Lai Tho, who is a psychiatrist and had flown in from Perth to see me, telling me a joke after I woke up from surgery.

“What’s the difference between God and a neurosurgeon?”

“God doesn’t think he’s a neurosurgeon.”

I laughed. The next morning, I grabbed my neurosurgeon as he was making his rounds and repeated the joke to him.

“I don’t think I’m God,” he replied dryly. There’s a good reason why neurosurgeons are not known for their sense of homour.

Indeed. One of the problems that plague religion seems to be the question of why bad things happen to good people. I’m not saying I’m a good person. But I am an atheist, and with atheists being more hated than homosexuals (at least in America), that’s not an easy thing to admit. I’ve heard people say that believing in a benevolent, personal God helps them overcome challenges. For me, however, it was precisely my lack of faith that helped me through my stroke. I’ve pondered before on the thin line between life and death, and come to terms with the fact that there is no such thing as life after death, just nothingness–so being disabled isn’t that bad.

And not believing that there is a personal God also meant that I had to be responsible for my own recovery. I had nobody to blame, nobody to be angry at for having an “arteriovenous malformation” (AVM) in my right brain. It was just luck of the draw. What was in my control was my attitude towards losing sensory-motor function on the left half of my body. I did cry a few times in coming to terms with my new disability, which I will attribute to heightened sensitivity to emotions because of the brain injury. But I couldn’t be sad for long; it just wasn’t in my nature.

Things did really seem hopeless the first few days after the surgery. I was so weak I couldn’t even sit up straight, and standing was out of the question. I consider the fact that I actually returned to work 3-and-a-half months later on 2nd September something of a minor miracle. My therapists insisted I couldn’t do it, and advised against it when I was finally discharged from the hospital on 22 July. I put it down to sheer bull-headedness and the loving care of my family and my girlfriend Rachel, who’s a Catholic. Maybe her prayers did work after all. I’ll write more about her and my family in later posts.

So, to answer the question of why bad things happen to good people, I quote “God”, who writes in the Last Testament: A Memoir, Book of Semiticus, Chapter 7, Verse 25-26:

25: To balance out the good things that happen to bad people.

26: Lo; it’s only fair.

It is left as an exercise for the reader to spot the logical fallacy…


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The long road to recovery

A year and a day ago, my life changed forever. The morning of May 15th 2011, a Sunday, a malformed blood vessel in the frontotemporal region of my brain ruptured without warning, and ended up destroying my left sensory-motor functions. After surgery and three months of hospitalization, I’ve spent the year since trying to restart my life and recover my independence.

At the urging of my occupation therapist at the Centre for Advanced Rehabilitation Therapeutics (CART) in Tan Tock Seng Hospital (TTSH), I’m starting this blog to recount some of my experiences as a stroke patient, given that not many stroke survivors are able to do so. Hopefully, this will prove useful both to therapists who would like to understand the recovery process from a patient’s perspective and to patients who are going through the same struggles.

If you’re reading this as a therapist, please let me know in the comments if there’s anything you would like me to recount in greater detail.

I’ll cover the stroke and its aftermath in more detail in subsequent posts, but I’ll note here the timeline of the major events:

  • 15th May 2011 – Rupture of  a frontotemporal arteriovenous malformation (AVM). admitted to Changi General Hospital, then transferred to TTSH. Kept under observation in ICU for a few days before being transferred to the general ward.
  • 24th May 2011 – Underwent craniotomy to remove AVM. Returned to ICU again before returning to general ward a few days later.
  • 8th Jun 2011 – Transferred to TTSH rehabilitation centre in Ang Mo Kio.
  • 13th July 2011 – Went back to TTSH main site for a 4V Angiogram. AVM found to be completely removed.
  • 22nd July 2011 – Discharged from TTSH rehabilitation centre. Continued to receive outpatient rehab therapy.
  • sometime August 2011 – outpatient case transferred to TTSH CART.
  • 2nd September 2011 – First day back at work.
  • February 2012 – Worked with TTSH Community Charity Fund to set up the Rehabilitation Assistance to Cure, Heal, and Enable Lives (RACHEL) fund to help needy patients access advanced therapeutics.
  • 16th May 2012 – Launch of Road to Recovery blog to recount experiences as a stroke patient in Singapore.

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