黄雅诘部落格 - Jackie's Journey

Chinese New Year

2012-01-20T17:06:00.001+08:00

The hustle and bustle of Chinese New Year always set me on the mood of reflection and relive past memory.

I remember when I was physically able; I actively participated in every detail throughout the preparations leading to this major celebration. Besides the usual shopping I would take part in spring cleaning, driving Mom to numerous marketing trips to both supermarkets and the wet market, accompanied Mom to buy paper products for rituals, cookie baking, doing up home with decorations to helping Mom in the kitchen to prepare the reunion lunch.

On the eve of Chinese New Year, we spent the evening preparing for the ritual to usher in Chinese New Year at the stroke of midnight. Red paper were wrapped around each fruit, sweets and cookies were arranged in a red tray. During the ritual scented incense and paper money burnt were burnt.

Every morning during Chinese New Year, we prepare to greet visitors by putting as much drinks as possible in the refrigerator, get the Chinese tea leaves and tea pot ready and arrange cookies in a very nice swivel tray, placed peanuts and kuaci in separate containers. When my siblings and their families came bai nian on the second day of Chinese New Year, while Mom was busy exchanging greetings with our love ones, I would be busy serving drinks, beers, Chinese tea, cookies and others which we had prepared earlier. Ang Pow time soon follow, the act of giving and receiving ang pow among a group of people in the house was quite a happy scene. Being bachelor, I received ang pows of course.

Then it was time to prepare lunch for about forty people. I would play assistant to Mom in the kitchen. After lunch, the adults would adjourn to the gambling table while the children would be left to enjoy the endless drinks and snacks. I would be a happy waitress at the gambling table by then, serving beers, peanut, kuaci, cookies and cordials to the gamers.

The preparation for the Birthday of the Jade Emperor which falls on the 9^th day of Chinese New Year starts on the 7^th and 8^th day of Chinese New Year. Mom would make all sorts of kuih on the 8^th day but the ingredients need to be prepared on the 7^th day of Chinese New Year.

The ninth day of the Chinese New Year is a day for Chinese to offer prayers to the Jade Emperor of Heaven in the Taoist Pantheon. This day is especially important to Hokkiens and Teochews (Min Nan speakers). Come midnight of the eighth day of the Chinese New Year, Hokkiens will offer thanks giving prayers to the Emperor of Heaven. Offerings will include all different kinds of meat and seafood; chicken, duck, roasted pig, fish, crabs, prawns, besides these there would be hard boiled eggs, vermicelli, flowers, fruits, cookies, and sugarcane. Sugarcane which come in a pair complete with leaves and root is a must as it was the sugarcane that had protected the Hokkiens from certain extermination generations ago. Tea and liquor is served as a customary protocol for paying respect to the Jade Emperor.

My siblings, their families and a few relatives would join us in our home for thanks giving prayers to the Emperor of Heaven. After prayers we would eat vermicelli soup and hard boiled eggs for good luck and prosperity.

Since 2002 we would celebrate Chinese New Year like to old days, but with less frills. I didn’t take part in the physical stuff anymore but am still qualified for ang pow. I found myself in the planning department where some of the major tasks were to jot down the to-do list, shopping list, grocery list and remind Mom about the things she misses out.

During Chinese New Year I put my best foot forward in entertaining guests, be it siblings, relative or friends.

In the year of rabbit, I had graduated from hydrotherapy department to a more specialised and personalised rehabilitation centre. The rehabilitation physicians, physiotherapists, occupational therapists and I are pushing as hard as possible in the hope of finding a breakthrough in my physical ability in the year of the Dragon. Another positive from last year was that I had tried some writing and found it to be quite fruitful so far. In fact I took it as a good start to 2012 when my article was published in early January.

I hope the year of Dragon would bring with it peace, health and the many returns that I had work for all these years.

Happy Chinese New Year! Have a prosperous year of Dragon. Everybody.

Rehabilitation

2011-12-03T22:17:00.002+08:00

Medical professionals like physiotherapist, occupational therapist and rehabilitation physicians are viewed as the front of all wisdom regarding disability. The purpose of people with disability attending rehabilitation services is to improve a person’s quality of life. Normally rehabilitation services are focused on a person’s functional independence in the society. Among the common goals are increasing strength and mobility; improving one’s ability to accomplish activities of daily living. Basically rehabilitation services are based on one’s ability rather than disability. This highlights the fact that one of the most important responsibilities of physiotherapists is to enhance on a person’s ability according to an individual’s needs instead of fixing the disabilities in question.

Some people were born disabled, there are others who become disabled after a lifetime- whether brief or long, it may happen in a catastrophic moment, or it may take days, weeks, months or years for illness to develop and manifest. In some cases a full recovery is expected but in most cases the damage is done and hopes of recovery if any is slim or takes a long process. This kind of disability is not something anyone can fix or undone over a short period. Trying to fix a disability is like trying to accommodate a rectangular into a cube of the same parameters.

I have attended a new rehabilitation center recently; all the medical professionals involved from the rehab physician, physiotherapist to occupational therapists were very good. They were most encouraging and helpful, besides they teach me new tricks on how to improve my mobility.

However during my second visit to the center I was saddened to find that not every physiotherapist applies the same approach to their patients, apparently one of the physiotherapists still possesses the mentality that a patient’s disability can be fixed. Instead of working to improve my physical weakness the wise therapist spent time perfecting the exercise routines which was previously taught by her colleagues and trying to correct my immobile ankle and outward right foot. Using her professional knowledge the therapist kept asking me to perform what would look normal to her. After trying a few times without success the therapist said I was not doing it according to her way, I was so frustrated and upset that it almost reduced me to tears. I immediately escaped to the washroom to regain my composure. After that I decided to cut the session short and went for some personal grooming.

Although most professionals are intentioned and sincerely desired to help, their personal knowledge about the disability was limited to textbooks and offices. If a patient spent time doing physical therapy throughout the day till she is too tired to continue with her daily activities, then just how could she improve on her quality of life? Should this patient double her effort in doing more physical therapy till she recovers one day, then only start doing the things which she enjoys? According to MedicineNet.com the definition of quality of life is; Quality of life: An important consideration in medical care, quality of life refers to the patient's ability to enjoy normal life activities. Some medical treatments can seriously impair quality of life without providing appreciable benefit, while others greatly enhance quality of life.

Generally, it is necessary to evaluate the ways the various impairments impact people's lives. Disability is a highly individual issue; as such there isn't a one-size-fits-all approach when dealing with people with disability. For example deafness or even blindness may impede a person's participation in a conversation, whereas physical disability might prevent one from attending the gathering at all. In physical therapy there appears to be a number of categories of disability. For example; disabilities could be due to spinal cord injury, stroke, cerebral palsy and neurological problems. Furthermore how a person reacts to disability was greatly influenced by the fact that whether the disability was present at birth or happened later to a previously normal individual. And how people react and adjust to disability is partly determined by the mix of helps and hindrances they encounter in their lives.

In recent years through concerted efforts by World Health Organisation, respective Ministries in the Governments(in this particular case no doubt the health ministry and the relevant departments), Non-Government Organisations, Disability Rights Movements, Disability Advocates Groups and an increasing society and cultural awareness have made adjustments to a whole new life easier for the disabled. I hope the day would come when everyone at least everyone in the medical profession who are working with disabled person will be guided by the vision that one day all people will live, work, learn and play based on abilities, not disabilities.

The 13th Year Of My Brain Surgery

2011-11-16T12:00:00.001+08:00

The 13^th Year of My Brain Surgery

Time flies, I will be celebrating the 13^th anniversary of my second chance at life this coming 20 November. It was on this day, thirteen years ago when I was wheeled into the operation theater for a brain surgery. Little did I know that the beast which had invaded my brain would leave a trail and would later redefine the course of my future.

It all began after I was diagnosed with brain tumour on 15 November 1998, I was only 32 then. The then MRI impression read as follows:

The meningioma measuring 5x5x5cm ,

mid sagittal vertex meningioma extending more to the left,

meningioma surrounding the superior sagittal sinus which appears to be patent.

Slight odema can be seen near the frontal lobe,

cortical veins were displaced by tumour,

superior sagittal sinus block by meningioma.

A brain surgery was carried out to resect the tumour four days after the diagnosis. Fortunately as massive as the tumour was, after an eight-hour delicate surgery I came out of the operation theater alive. (Not kicking though). However due to the size of the tumour, the neurosurgeon didn’t manage to get all of it. Post-surgery recovery took six months before I was fit again for work. Being a cooperative patient I went for annual brain scans on schedule despite my diligence the neurosurgeon detected a recurrence two years later. It was very close to the aorta thus precluded invasive surgery. In order to prevent further neurological damage I underwent stereostatic radio surgery to remove the recurrence.

Six months later on 1 June 2001 I experienced a grand mal seizure and then paralysis ensued. Expectation of an early recovery grew thin as days turn to weeks, weeks to months then months to years while my condition wasn’t getting any better. Naturally hope turned to despair at the same time fear and worry surfaced amidst denial and grief. Finally we came to a stage when we realized that there was nothing we could do to change the situation in a short term. The future of having to live with paralysis permanently looked gloomy at that time.

The onset of disability was a cruel blow to me. I suffered a sense of loss over the functional ability that the brain tumour has destroyed. Gone were the dreams of climbing up the corporate ladder, posh cars, lavish home and luxurious travels. My fear and worries that life would be painful or meaningless without mobility is beyond imagination. The fact that I treasured independence and freedom highly made the reality difficult to accept. The anguish was equivalent to those suffered by a marathon runner who fell down after finishing three quarter of the most important race of her life time. Suddenly happiness seemed beyond my reach.

Subsequently I became distant and non-committal with friends, ex-colleagues, it was impossible for me to find some sense of connection going at that time, our friendships sadly has been fading. Needless to mention my social circle had been diminishing since. Due to various reasons disability prevented me from attending any social gathering at all, unless the event was held in my home.

I began to regard myself as handicapped, not capable, not efficient, not useful, troublesome, always creating too much inconvenience for others and unaesthetic. This is true regardless of the fact I was around family members or friends. In the end the emotional stress just got the better of me and I shunned away from people whenever I could.

I have questioned thousands of times whether my disablement was a punishment from god for past sins. I did not possess the spiritual knowledge to view it as a test or an opportunity for spiritual and self development. Instead I believe in the purpose of living is to look for happiness. And the ingredients which made up happiness are health, family, friendship, career, achievements and hope. In the process of pursuing achievements survival and independence are prerequisites and disability has no place in between all these. It was so unfair for all it took was an illness to take these away from life and shortened the pursuit for happiness. My liberty was seriously hindered thus put life in continual jeopardy. I feared that happiness would leave me due to my disability.

The feeling of helplessness, fear, anxiety, agony and negative emotions while coping with reality made me weak at times even paralysed me. The fact that I become disabled because of a rare decease made the adjustment to daily basic needs more difficult.

In the early stages of disability, friends, relatives, myself included had hoped for my early recovery; recover so that I could go back to my previous healthy, energetic, confident and happy same Jackie again. Months turned into years, years into decades, we realized we were hoping against hopes. However hard it is we have to accept the cruel reality.

There were lots of up and downs in the past thirteen years. The relief after each recovery and the frustration after each fall. I fell many times, picked myself up as many times and cried even more. With each fall I became more determine and persistent in physical therapy. Now, I am able to look back to the last thirteen years with a victory smile, though I haven’t gain full mobility but I have survived the toughest part of the journey and managed to prevent further disability. Actually I am quite satisfied and proud with these small achievements.

Throughout these years I have learned to appreciate more, to count my blessings for the good things in life and never take things for granted however small or petty they might have appeared. Therefore I am grateful for:

1. 1.Waking up every morning.

2. 2. Having the ability to practice physical therapy.

3. 3.Having a healthy and strong mother.

4. 4.Having a very supportive family.

5. 5.Having supportive relatives and friends.

6. 6.Having food on the table.

7. 7.Having a roof above the head.

8. 8.Having the resources to use the internet.

9. 9.Jobs that came my way.

10.10. Possessing the ability to read.

11.11. Possessing the ability to hear.

12 12. Having the peace of mind. And

13.13. Having the ability to use my damaged brain.

For those who found yourselves disabled due to whatever reason, I have some precious lessons to share; Accepting the notion that nothing is permanent; One should never ever dwell in self pity when life dealt a cruel blow, after grief, denial, don not deny yourselves new lifestyles, start adapting to a totally new life; Despite some lost friendships there are still others who you can call friends and cherish; Try living healthily through having peace of mind, body and soul; The ability to forgive and forget without holding on to holding grudges or hatred can help in cultivating peace of mind; Do not let yourself idle, choose hobbies suitable for your ability such as keeping a pet, gardening, needling, reading, writing, physical therapy, playing computer games, watching television, listening to music, surfing the world wide web or anything that you would find therapeutic; It is very important to be patient; Taking very good care of yourself, don’t let others worry about you, this way you will also be doing something for the society; After all you are responsible for your own life and the priority should be to find serenity and happiness.

Walking tall despite difficulty

2011-10-15T16:22:00.001+08:00

Every Sunday I take a morning walk around the neighbourhood. This exercise is always accomplished in the company of our helper. We set out with the necessary accessories; my walking frame and sports sandals. I said sports sandals instead of sports shoes because I have difficulty wearing shoes on my right foot.

We start by negotiating the drain and the cemented rough patch in front of our house. Then I need to use all my strength to haul up and balance my entire body on the road which is on a higher surface.

Holding on to the walker I make a 90 degree turn carefully in the direction of our journey. We begin our morning walk from that point. Throughout our walk I have the opportunity to observe and meet up with various people who are living in the neighbourhood. Just to quote a few;

There is this guy who walks his dog and stops to wish ‘good morning’ and commented about the weather. Then there is this very nice couple who walk after walking their dogs, sometimes the husband will tend to the garden while the wife continue walking.

Also there is this kind old lady in her seventies who always gives encouraging words. Although this grandma visits other children outside of town, she prefers living in this area with her unmarried sons where she has been living for the past fifty years. We meet and chat every Sunday morning while she waits for the dobby.

Then there is this retired nurse in her sixties who lives alone in the double storey house. The nephew who used to live with her has succumbed to brain tumour last year. This lady has even offered to massage my lower limbs to improve blood circulation. Then there is this grandpa who will wish good morning and god bless you.

Almost all these people asked similar question when we met for the first time. Their queries naturally surround the events which led to my disability.

They would ask;

What happen to you?

Did you fell and injured your leg?

Did you have a stroke?

My answer;

No, I am a brain tumour survivor. A kind of growth in the brain.

Their response;

Oh dear. Did you have an operation? How long ago? How come the brain affects your leg?

My response;

Yes I underwent operation about ten years ago. Our brain have a lot of nerves it’s just like a CPU to a computer, if something goes haywire in the CPU, the computer will not function correctly, same thing here, if there is a damage in the brain certain parts of the body will not work properly.

Their response;

Are you still on medication? What did the doctor said? Will you recover?

My response;

Yes, I am on certain types of medication. The doctor says something about scar tissue pressing on the nerves. Nobody can say for sure if I would recover to my previous form but the doctor said physical therapy would help, and here I am working very hard at it.

The answer to their last question normally brought some regret to their faces. Some of them express relief (maybe because I am still alive), others said I was lucky to have come through the illness in with only my mobility affected, and point out that they have heard about patients losing their eye sight, hearing, memory, senses and even lives. There are yet others who offered encouraging words and good wishes. However there is this particular guy, who responded in his unique way, he said something like: (Aiyo! But if you could not recover, you will spend the rest of your life with this disability. So pitiful lah). At the moment I thought to myself: Am I giving this gentleman a pitiful impression?

I think pitiful or not, the particular person with disability has the last word and is not for others to judge. We may have limitations in our daily lives but we try to overcome or work around these obstacles. Sooner or later we will find our own ways to adapt to our new lifestyle. After that before you know it we are adapting very well and enjoying our new lifestyles. For me it is a repetitive process of adapting, trying, falling, adapting, trying, falling and getting up and trying to adapt to the environment. For some persons with disability they just make the best out of their circumstances trying to reach for the sky. For others they just want healthy, peaceful, relax and comfortable environment. For example the participants in Paralympics Games tried their best to be the fittest, the strongest and the fastest in their respective competition. On the other hand not all people with disability wish to take part in the Paralympics.

My first epilepsy episode 10 years ago

2011-09-16T15:20:00.005+08:00

The Star Paper Thursday September 15, 2011

Overcoming hurdles from a disabled person’s point of view

CLOSE TO HEART

BY JACKIE NG

A little fortitude can take one through unexpected twists in life.

MY body convulsed violently and the table which I was holding on to, shook as if it was hit by an earthquake. It was the first time I had experienced a seizure, and I was as shocked as my colleagues.

After I had recovered sufficiently, I was rushed to the hospital. When I regained consciousness, I spoke incoherently. I felt very weak and could not even walk on my own. Though the whole episode lasted less than five minutes, it changed my life from that day.

Later I found out that what I had experienced was a type of seizure which is common in those with epilepsy. It could be due to a lesion in the brain or some other neurological problem. The only way to keep the condition in check is through anti-convulsion drugs.

The epileptic attack took place six months after stereotactic radiosurgery to treat a residual tumour in the brain. (Stereotactic radiosurgery is a highly precise form of radiation therapy which focuses on a specific area of the brain. Some years prior to the treatment, I had undergone an operation to remove a tumour in the brain.)

It has been 10 years since I had the first epilectic attack. I manage my condition through medication but the weakened side of my body never recovered.

According to the physiotherapist, it was due to the loss of strength and control over some muscle groups.

There were many dark days as I struggled with self-denial and depression, before I finally came to terms with the fact that I may have to live with what the doctors termed as progressive paralysis of the right side of the body.

After months of diligent physiotherapy, I managed to slow down the progress of the paralysis and regained some muscle strength.

I have come a long way from the early days when I was bed-bound most of the time. I learnt to use the walker, and later the wheelchair which gave me a certain newfound freedom. I can now move around more independently and with a certain measure of ease and speed.

It isn’t easy learning to live with a disability. There was times when the challenges seemed insurmountable. Trying to live with accessible facilities or the lack of it is a norm for the disabled community in the country.

Logistics is always an issue in any outing. I rely mostly on taxis for transport. Sad to say, some taxi drivers would not stop for me. Some pretended that they did not see me when I tried to wave down a taxi.

Then there are taxi drivers who take advantage of disabled passengers. They charge extra for boot usage despite a ruling from the Commercial Vehicle Licensing Board (LPKP) that there should be no extra charges under the new fare system.

Once when I complained about the charges and tried to jot down the cabbie’s particulars so that I could lodge a complaint with LPKP later, the driver ticked me off when he realised what I was trying to do.

Feeling vulnerable and afraid that I would be harmed, I alighted without taking the cab’s particulars.

Like any other shopper, I enjoy retail therapy once in a while. I like to hang out at Suria KLCC because of its disabled-friendly facilities. But there’s one thing that baffles me: the toilets for the disabled are always locked. I have to ask the cleaners to unlock the toilet each time I need to use it. However, not every cleaner has the key!

As all the cleaners are either Indonesians or Bangladeshis, they are not around between 12.45pm and 2.45pm on Fridays as they need to go to the mosque for prayers, so I avoid visiting this premier shopping mall on Fridays.

I also like to shop at Jusco because it is well-equipped with facilities for the disabled.

Just like any abled-bodied person, the disabled enjoy the simple pleasures of life.

We make the best of our circumstances, and are thankful for the blessings that come our way.

Many of the hurdles in our path are man-made. With a little more empathy from society, we hope to overcome barriers and push into new frontiers.

The New Year

2011-04-02T16:55:00.004+08:00

I know it is April already and only now I am starting to write about the new year. After all the holidays and feasting of the new year, almost the rest of January was spent on preparations in ushering in The Chinese New Year - The Year of Rabbit which we celebrated on the 3rd February 2011.

On the 17 January, when I was still in new year mood and preparing for the Chinese New Year, bad news arrived. Tan, my high school mate had passed away last night. Apparently he was taking his nap when his wife (who has been my friend since primary school ) found him semi-conscious. By the time para-medics arrived they failed to revived him and the rest was history. He left behind his aged parents and three young sons aged 16, 14, and 12.

Within a week of Tan's demised, my nephew who was 36 died in his sleep. He left behind his parents (my cousin sister and her husband) both about 60 years old, a 4 year-old son and a two months pregnant wife.

Their untimely death came so sudden and shocked their close ones, friends and relative to the bones. It seems life is so unpredictable. Therefore I have made a note that there are three things which we cant delay. There are 1) filial piety 2) being human - do good cause and 3) be as healthy and fit as possible. It is very important to set my priorities right in my daily life.

For a start I have made a pledge to donate a small sum to UNICEF on a monthly basis.

I once read the book 'Tuesdays With Morrie' by Mitch Albom and I remember sentences like "Death is as natural as life" "Learning how to die is learning how to live" "make peace with living" "All things born are bound to die" "We could die anytime" etcetc. So after some deep and thorough thinking I did some research, went shopping and finally decided on a final resting place for myself.

My next biopsy should be some time in June. For the time being I just keep a healthy lifestyle and I vowed to enjoy life in health and in sickness.

12 YEARS

2010-11-20T00:00:00.008+08:00

Time flies, it has been 12 years and I have survived till this day ! To say the least, I have struggled both physically and mentally throughout the 12 years. The initial shock had lead to fear then grief and thank GOD after some time the world was normal again. The second time came when everything was well and the procedure went well too. Then came the third round... this time was more severe. Hope lead to despair as things got from bad to worst. Quickly the cruel facts/reality turned into fear, anger, anxiety, agony, worried and depression all took place at the same time or sometime or the other. I fell many times, picked myself up as many times and cried even more . Tears welled up my eyes whenever I think of the toughest part of a journey I have been. At the same time I am very happy that I have actually survived and experienced so much during the difficult period .

I was diagnosed with a parasagittal meningioma in November 1998. Surgery was done 4 days after diagnosis. Six months later I was back at work. I underwent a stereostatic radio surgery (gamma knife) in December 2000 but GOD has other plans for me as I suffered a grand mal seizures on I Jun 2000 which left me living with paralysis. It was beyond my imagination then I will survived a decade after battling endless emotional roller coaster and physical difficulties. Yes ! I am a 12-year brain tumour survivor ! Yoohoo....

Life Is So Fragile

2010-09-25T12:46:00.007+08:00

One of my cousins passed away from an accue terminal decease recently. The fact that he was only 49 and I met him last November in a wedding dinner and some relatives met him again somewhere between March and April 2010, made the news of his death sounded so sudden and unreal.

Life is so fragile. Every moment is precious. We truly have to appreciate everyone and everything we have around us while there is still time. May everybody lives happily and peacefully till the end.

Irritated

2010-08-22T12:24:00.004+08:00

Have you ever conversed with someone whose every other word was 'frankly, honestly, lets be honest, to tell you the truth, lets be honest about it, if you know what I mean, think about it, you got that........ Some people seem to preface every remark with an assurance of their candor. Instead of providing assurance it made the listener wondered why you need to mention those words. Its so unnecessary and irritating. (conversations are not contracts).

PC, Travelling and Some Lost & Found Friends

2010-04-09T11:36:00.005+08:00

I was preoccupied by some real life events lately. First of all is the issue with computer. The home PC had been behaving weirdly for the past six months or so, initially it just crashed at the middle of something or the monitor would go blank at the wrong time but since last month the frequent crash has become more disturbing and annoying, it would 'froze' within seconds after start up. I have given up in trying to solve the don't know hardware/software problem and is considering getting a new computer. At the moment I am borrowing my sister's desktop. Secondly, I have been attending an exhibition at another state at the end of last month. It was a rather tiring trip and I need some time to recuperate. Thirdly, I am attending to matters involving a bad tenant. How I hate this 'sigh'.

Early this month I met up with some secondary school mates .....after twenty over years. We get to know each other at the age of thirteen, we spent twelve years in the same school some of us enrolled in the same high school, others entered the workforce after secondary school, there were yet others who migrated. The other day one of them came back from Shanghai, China. We decided to call for a gathering on this occasion. After a flourish of e-mails and phone calls, thirteen persons turned up for the dinner at a Korean restaurant. Ten adults (nine women and a man), two teenagers and a helper. Luckily everyone was still able to recognized everyone, besides growing a bit horizontally there was not much features changes on everybody. Laughter were aplenty when conversations were about old time teenage stories and jokes. Six were married with-family, four are single. Some of them were quite shock to find out about my last ten years. We also discussed about how and where to find some long lost friends. On top of these, I tried to keep up with physiotherapy which is my most important core business.

I Ain't No Patient loh !

2010-03-04T17:40:00.018+08:00

Tuesday morning I accompanied mother to the hospital, Mom had to be admitted for epidural injection the next day. We first went to the admission counter to processed Mom's admittance. After we were done the counter staff asked us to wait for concierge to bring us to the room. All these while I was using a wheelchair, Mom with her cane and Sim to carry our stuff. We waited for about five minutes before a gentleman emerged he then picked up some papers from the counter and without another word he came to push my wheelchair and was striding towards the elevator, amused and flustered I stopped the wheelchair by holding both the rear wheels. I told him repeatedly that Mom was the patient but he couldn't listen properly because he was standing behind the wheelchair until a counter staff told him actually who was the patient. With his ' oh! sorry! sorry!' we proceeded to the room, this time slowly with the handsome guy waiting for Mom. This incidence says a lot about our society's view on disabled person. Whenever a disabled person appeared at a hospital he/she must be the patient even though the disabled person happened to be a healthy-looking person.

A surprised visitor

2010-02-20T15:03:00.020+08:00

The day before yesterday, an aunt-my mother's adopted sister came visiting. In my memory the relationship between my 83 -year old aunt was never close. I can't even recall when was the last time my aunt visited us, I think maybe forty years ago or so. When they arrived, I greeted my aunt and cousins. While my cousins responded my aunt seem not to notice, I greeted a few more times but still no response later my cousin explained to us that his Mom is near deaf due to old age and that my aunt went under the knife to remove cataracts about two years ago. We updated each on past and present state of affairs. Of course Mom had to sit very near and talk very loudly to my aunt while were trying to tell our stories. One thing was obvious though, seeing that I am using a walking frame my cousin wished to know what happened to me so I told my story again. I felt very proud of myself because I am confident that I am happy, healthy and well. I have adjusted to the new lifestyle very well. Six years ago I can't even bring myself to think about my fate without feeling sad, angry, and regret. The grief was so overwhelming, I cried every time thinking about the things I could have achieved, the uncertain future and fear built up within me. To date, I am proud to be a 12-year brain tumour survivor and glad to share my story.

The other day my sisters and I had dinner at a crowded restaurant. Despite all the curious stares, I managed to keep cool and took time to walk steadily entering and leaving the restaurant. These might be petty to a perfectly normal person but to me success in any activity is an achievement.

2nd day of Chinese New Year

2010-02-16T22:52:00.010+08:00

It is traditional practice that the married daughters' families came home to 'pai nian' or 'new year visit' on the 2nd day of Chinese New Year. Our family home was filled to the brim on this particular day as all my brothers, sisters, their spouses and children came to 'pai nian'. My mother has 2 married sons, 5 married daughters, 22 grandchildren, 1 granddaughter-in-law, 1 grandson-in-law and 5 great-grand children. That meant we had about 50 people in the house ! There were lots of cheers, greetings, well wishes and exchange of 'ang pow' - red envelope containing money; it is a traditional custom that the elders and married couples give 'ang pow' to children and those who are single. Plenty of drinks, cookies and other new year delicacies were served. Our marvelous, terrific and ever brilliant Mom also served sumptuous lunch and dinner for everybody.

As the first two days of Chinese New Year were reserved for close families and relatives, we planned to go house visiting the following days.

Year of Tiger

2010-02-13T11:33:00.003+08:00

Today is Chinese New Year Eve. Mom busied herself in the kitchen since 6.30 in the morning. Sim, our Cambodian helper was assisting Mom. I stayed around in case both of them needs some translation. Not that I understand any Khmer, but Mom doesn't speak English and Sim understands little English and Mandarin. Training a person is tough, training one with language barriers is much more difficult. During the last two weeks I got tired of walking from all the showing the exact matter and the location of things to Sim. I think the process of demonstrating and showing was more exhausting than working on physiotherapy. I expect today to be a long day, after the reunion lunch and cleaning, the preparation to usher in the Year of Tiger will begin. The celebration would start at midnight. Flowers, Chinese tea, fruits decorated with red paper, sweets (the more colourful the better), cookies, and some of the must-have are arranged nicely in festives' trays are among the essentials for worshiping ceremony.

Ushering in the year of tiger

2010-02-01T15:40:00.006+08:00

Chinese New Year is only 2 weeks away, this year would be 'the year of tiger'. As normal preparations are being made to usher in the year of tiger. Every home is engaged in spring cleaning, cookies baking and house decorations at this time of the year. Shopping complexes are abuzz with festive songs and crowds of shoppers. Even nurseries who are selling plants and flowers with prosperity symbols are doing good business.

At a time when we are trying to get things done in time to ring in the new year, our Cambodian domestic helper join us timely. The 22 year-old Sim reported for work last Wednesday, armed with very limited English language, doesn't understand a word of Chinese, Sim couldn't follow instructions properly and needs close supervision in all the task designated to her. Most of the time she only understands after a demonstration of how to carry out a particular job. Despite all the confusion, frustration, laughter and relief, Sim did play her part helping with house chores. Meanwhile we tried to communicate with her in Chinese hopefully she will pick up some Chinese soon. At night I teach English and Chinese using pictionaries. Besides I trained her how to assist me occasionally and ways to handle the wheelchair. Hopefully she would find her stint with us pleasurable and enjoyable.

A Great Beginning To The New Year

2009-12-30T18:18:00.007+08:00

I went to get the latest MRI report this morning, before I had enough time to peep at what the Radiologist had written on the report, a nurse announced it was my turn to see the Neurosurgeon. The Neurosurgeon was in casual mood this morning: it could be due to either the year end festive mood or it could be the patient who just walked into the room displayed a cheerful outlook. I would like to think it was the latter (^-^). While the gentleman was viewing the MRI films on the light box, I asked him whether I could have a look at the report and he agree. Holding the report, I was looking for significant phrases and found it.........There is no perceptible increase in the residual. No mid-line shift.

Though these lines had been in the last five MRI reports, I still felt relieved. The Neurosurgeon said the fact that there was no difference from previous MRI is a very good news indeed. He also looked through some of the bone density X-rays and told me that the bones mass and the joint looked normal and there is no indication of osteoporosis as previously suggested by a calcium supplement promoter.

Noticing the work I put in physiotherapy has done me good, the Neurosurgeon reminded me to continue working in both hydrotherapy and gym exercise.

I am very happy with the MRI findings and the result of bone X-rays. A great way to begin a new year.

I would like to wish all my readers A Happy New Year & may 2010 be full with abundance for you.

Dong Zhi

2009-12-22T13:36:00.004+08:00

Traditionally the Chinese celebrate Dong Zhi (winter solstice) on 22 December which is just a few days before Christmas. Glutinous rice balls (tang yuan) served in gingerly sweet soup is a must during Dong Zhi. Some families hold reunion dinners during this auspicious festival. Though sometimes we prepare tang yuan as dessert and it is available most of the time at dessert outlets, tang yuan is a staple dessert to mark Dong Zhi.

Euro Deli Grill

2009-12-16T17:33:00.008+08:00

Today Whai Yee is on leave from work and we decided to go out for lunch. Whai Yee suggested that we go to a place along Jalan Yap Kwan Seng that serves tasty sausages and pork knuckles.

The restaurant is Euro Deli Grills, an European food outlet which serves Swiss-German delicacies. The restaurant has an outdoor sitting area as well as indoor. The inside of the restaurant is quite comfortable with a bar at the middle, pictures on the walls, footie pictures hanging around the top of the bar, checked table linens, nice furnishings and one can feel Christmas is coming as all the Christmas decorations were up, garlands, baubles, bells and etc etc.

After going through the menu and browsing the buffet spread, we decided on the buffet lunch. We tasted soup of the day, salads, spaghetti, sausages, pork knuckles, pork chops, fruits, and desserts.. Oops I only focus on the food ...forgot to take pictures of them. On the way home I told Whai Yee I planned to skip dinner after such a sumptuous lunch.

Holiday at my sister's

2009-12-11T12:14:00.002+08:00

Later in the afternoon, Siew Yew, my younger sister is coming to take us to her home at Sri Gombak. Mom and I will be staying with her family for about 10 days. We'll probably come home the next weekend. I am looking forward to a wonderful time with my sister's family.

Holiday in Semenyih

2009-12-07T13:39:00.005+08:00

My holiday season has begun. Mom and I spent the whole of last week in Taman Sri Semenyih with Boon Cheong's family. Semenyih is and small village where everybody knows who's who in the neighbourhood. The place is still developing, so you can see greens everywhere, jungles, trees along the road sides, fields....due to these one can smell the fresh air and breath freely..no chemical contamination blah..blah..blah..

The nearest commercial area which is the wet market is within 10 minutes drive. Banks, shopping complexes, cybercafes, pharmacies, Chinese traditional medical shops, post office, hospital, clinics, schools, all amenities are situated between 10 to 20 minutes drive. There are lots of factories at the Semenyih Industrial Area, most of these are sawmills.

There are also plenty of fishing ponds in Semenyih. In fact fishing is a weekly family entertainment for my brother. Both parents and children enjoy fishing so much that they could spend up to 12 hours just to fish. Most of the time their time is rewarded with some big and small fishes but certain times they left the fishing pond empty handed.

Last week was my lucky week because the family's harvest the day before I arrive was quite handsome. I got the chance to feast on fresh fish throughout the week. Fish is my favourite seafood and meat.

We stayed indoors most of the time due to rain. Although on holiday from hydrotherapy I did not slack in my physiotherapy. After breakfast every morning I walk in the front porch for about 30 minutes, then I do some stretching and strengthening exercise using the tetra band which I brought along. I spent of the afternoon and evenings reading and watching television. My sister-in-law prepared a variety of tit bits and fried food each day which I ate heartily, these are stuff I would normally avoid eating but since I am on holiday mood, my limitation on food also became more lenient. What matters most was I left Semenyih feeling happy and loved.

I am thankful for having......

2009-11-27T17:13:00.007+08:00

1. a roof over my head
2. clothes on my back
3. food on the table
4. my mother
5. sisters & brothers in law
6. brothers & sisters in law
7. nephews
8. nieces
9. peace and harmony in the family
10. the means to relieve mother off her aches & pains
11. my eyesight
12. my hearing
13. my helper
14. the physiotherapists
15. the doctors
16. the nurses
17. an injured but semi-functional brain
18. an caring aunt
19. cousins
20. real friends
21. cyber friends
22. taxi drivers
23. mass media
24. internet
25. the ISP
26. access to electricity & clean water
27. access to reading materials
28. access to music
29. learned to persevere in difficult times and last but not least
30. my parents for giving me life, education and most of all LOVE

A little treat for me

2009-11-21T16:12:00.005+08:00

This morning I hopped (imagine that!) into a beauty saloon for hair cut, hair colouring and eyebrows trimming. My cousin, Chun Peng who picked me up in the afternoon, teased me. When I said that I was celebrating my 11th crainaversary, she smiled teasingly. Seeing her response I jokingly asked; Don't you know a woman could come up with whatever excuse just to pampared herself a little bit sometimes ? For all you know this was the first time I got my hair coloured because previously I was weary of the toxic chemical substance contained in hair dye.

Yoohooo.........

2009-11-20T12:10:00.003+08:00

20 November 2009 marked the 11th year after I underwent a massive brain surgery. 11 years- a milestone indeed. Reflecting on life all these years......I am proud of myself and I am sure all my friends and love ones will.

The Bravehearts

2009-11-17T17:26:00.005+08:00

Over the weekend I participated in the Symposium for Spinal Cord Injuries at Kuala Lumpur International Hotel. The event was organized by Perwira K9 also meaning The Bravehearts of K9. Like many I was trying to figure out what K9 stands for, I found out later that K9 is actually a spinal ward in Kuala Lumpur Hospital. A group of patients and ex-patients decided to form The Bravehearts of K9 with encouragement and support from medical professionals namely doctors, rehab specialists, counselors, physiotherapist and nurses.

Why the bravehearts ?

Imagine...A normal person in his mid life, suddenly obtained spinal cord injuries which rendered him paralyzed, a drastic change in normal lifestyle, coping with multiple medical conditions both physically and psychologically, immobility, socially, financially and so on and so forth. It needed the hearts of a warrior (perwira) to cope with all these and move on with the new lifestyle. This is why we are called The Bravehearts.

Being a disabled brain tumour survivor I am able to identified with The Bravehearts. It was the first time I met with so many wheelchair uses (about 50) during an event. Everybody was cheerful, happy, talkative and animated during the 2-day event. I got the chance to observe all kinds of wheelchairs; big, small, light, heavy, sports, motorized and very colourful wheelchairs. One of the things that captivated me was how well most of them handled the wheelchairs by themselves in terms of maneuvering, propelling and wheelie. I watched with envy when some of them managed to balance their food on one hand while pushing the wheelchair with the other and some of them could balance food on their laps while moving.

The event was an enjoyable one and I am looking forward to attending another event organised by The Association of Interaction for Disabled People to be held on 6 December at Titiwangsa Lake Garden.

MRI Brain

2009-11-15T23:15:00.007+08:00

Last Friday I turned up at the Diagnostic and Imaging Department of Kuala Lumpur Hospital at 2.30pm. The purpose of my visit there was to have a routine MRI brain at 3.30pm. Immediately after lunch break, the registration office resumed at 2.45pm. However the staff who was manning the counter told me that they are experiencing some problems with one of the imaging machines. While waiting for further instruction I noticed he was busy making calls to enquire whether I could have MRI that day, meantime I pray that I didn't have to come back another day. Thank God I was then referred to another room (MRI 2) for the Magnetic Resonance Imaging.

A female technologist in MRI 2 was explaining that due to malfunction of the other machine, all patients were squeezed in that particular room, at that time there was a in-patient who needed urgent MRI so I was told to wait.

At about 4pm, it was my turn to get ready for the MRI. After changing into a very loose fitting gown and making sure I was cleared of any metal staff fasteners, jewelery including dentures, I was wheeled into a freezing cold room where a large cylinder-shaped tube surrounded by a circular magnet was placed. After transferring and lying down onto the super narrow bed attached to the machine, my head was placed on a brace to hold it still, a mask was then covered over my face, the technologist then told me to hold on to a plastic tear drop and I was to squeeze the tear drop in case of emergency such as difficulty in breathing, then I was given earphones to cover up my ears. After making sure I was well covered the technologist then pressed some buttons on top of the machine so that the bed slide into the cylinder before leaving me alone in the room.

After remaining very still and listening to the noise of the scanner for about 20 minutes, the radiologist came into the room with a needle filled with contrast materials, after sliding out the bed, she raised my right hand searching for veins to receive the injection. First she tried at the back of the palm but failed, I could feel slight pain caused by needle poking on my skin. She then moved up to the opposite side of the elbow, ouch! this time very painful but the contrast material refused to enter the bloodstream. I was getting a bit worry when she switch to the left side of the machine, and how relieved I was when she finally succeeded to administer the injection on her first trial at the opposite side of my left elbow.

After sliding the bed into the cylinder, they left the room again. Another 20 minutes, the scanning procedure was completed. Finally I left the department with 3 plasters, 2 on my right hand and 1 on my left.

Laws of Malaysia Act 685

2009-11-14T14:14:00.002+08:00

continue from previous post...

Access to recreation, leisure and sport

32. (1) Persons with disabilities shall have the right to participate in recreational, leisure and sporting activities on an equal basis with persons without disabilities but subject to the existence of emergence of such situations that may endanger the safety of persons with disabilities.

(2) The Council shall take appropriate measures -

(a) to encourage and promote the participation, to the fullest extent possible, of persons with disabilities in mainstream sporting activities at all levels ;

(b) to ensure that persons with disabilities have an opportunity to organise, develop and participate in disability specific sporting and recreational activities and, to this end, encourage the provision, on an equal basis with persons without disabilities, of appropriate instructin, training and resources ;

(c) to ensure that persons with disabilities have access to sporting, recreational and tourism venues ;

(d) to ensure that children with disabilities have equal access with other children without disabilities to participate in play, recreation and leisure and sporting activities, including those activities in the school system ; and

(e) to ensure that persons with disabilities have access to services from those involved in the organization of recreational, leisure, sporting activities and tourism.

Laws of Malaysia Act 685

2009-11-13T18:36:00.002+08:00

continue from previous post...

Access to cultural life

31. (1) Persons with disabilities shall have the right to access to cultural life on equal basis with persons without disabilities.

(2) Persons with disabilities shall have the right to enjoy access -

(a) to cultural materials in accessible formats ;

(b) to television programmes, films, theatre and other cultural activities, in accessible formats ; and

(c) to places for cultural performances or services such as theatres, museums, cinemas, libraries and tourism services, and as far as possible, to monuments and sites of national cultural importance.

(3) The Council shall take appropriate measures to enable persons with disabilities to have the opportunity to develop and utilize their creative, artistic and intellectual potential, not only for their own benefit, but also for the enrichment of society.

(4) Persons with disabilities shall be entitled on equal basis with persons without disabilities to recognition and support of their special cultural and linguistic identity, including Malaysia Sign Language and deaf culture.

to be continued...

Laws of Malaysia Act 685

2009-11-12T18:18:00.003+08:00

continue from previous post....

Access to information, communication and technology

30. (1) Persons with disabilities shall have the right to access to information, communication and technology on equal basis with persons without disabilities.

(2) The Government and providers of information, communication and technology shall in order to enable persons with such access, provide the information, communication and technology on accessible formats and technologies appropriate to different kind of disabilities in a timely manner and without additional cost.

(3) The Government and the private sector shall accept and facilitate the use of Malaysia Sign Language, Braille, augmentative and alternative communication, and all other accessible means, modes and formats of communication of their choice by persons with disabilities in official transactions.

to be continued...

Laws of Malaysia Act 685

2009-11-11T15:53:00.002+08:00

continue from previous post...

Access to employment

29. (1) Persons with disabilities shall have the right to access to employment on equal basis with persons without disabilities.

(2) The employer shall protect the rights of persons with disabilities, on equal basis with persons without disabilities, to justify and favourable conditions of work, including equal opportunities and equal remunerations for work of equal value, safe and healthy working conditions, protection from harassment and redress of grievances.

(3) The employer shall in performing their social obligation endeavour to promote stable employment for persons with disabilities by properly evaluating their abilities, providing suitable places of employment and conducting proper employment management.

(4) The Council shall, in order to promote employment of persons with disabilities in the private sector, formulate appropriate policies and measures which may include affirmative action programmes and other measures.

(5) The Council shall promote opportunities for training for persons with disabilities in the labour market as well as opportunities for self employment, entrepreneurship, the development of cooperatives, starting one's own business and creating opportunities to work from home.

(6) For the purposes of this section, "employer" includes the Government.

to be continued...

Laws of Malaysia Act 685

2009-11-10T15:15:00.002+08:00

continue from previous post....

Access to education

28. (1) Persons with disabilities shall not be excluded from the general education system on the basis of disabilities, and children with disabilities shall not be excluded from pre-school, primary, secondary and higher education, on equal basis with persons or children without disabilities, including vocational training and lifelong learning.

(2) The Government and private education providers shall, in order to enable persons and children with disabilities to pursue education, provide reasonable accommodation suitable with the requirements of persons and children with disabilities in terms of, among others, infrastructure, equipment and teaching materials, teaching methods, curricula and other forms of support that meet the diverse needs of persons or children with disabilities.

(3) The Government and private education providers shall take appropriate steps and measure to enable persons and children with disabilities to learn life and social development skills in order to facilitate their full and equal participation in education including the following :

(a) to facilitate the learning of Braille, alternative script, augmentative and alternative modes, means and formats of communication and orientation and mobility skills, and facilitating peer support and mentoring ;

(b) to facilitate the learning of Malaysia Sign Language and the promotion of the linguistics identity of the deaf community ; and

(c) to ensure that the education of persons, and in particular children , who are blind, deaf or deaf-blind is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development.

to be continued...

Laws of Malaysia Act 685

2009-11-09T16:52:00.004+08:00

continue from previous post...

Access to public transport facilities

27. (1) Persons with disabilities shall have the right to access to and use of public transport facilities, amenities and services open or provided to the public on equal basis with persons without disabilities.

(2) For the purposes of subsection (1), the Government and the providers of such public transport facilities, amenities and services shall give appropriate considerations and take necessary measures to ensure that such facilities, amenities and services conform to universal designs in order to facilitate their access and use by persons with disabilities.

to be continued...

Laws of Malaysia Act 685

2009-11-08T23:02:00.007+08:00

Although Act 685 (Persons With Disabilities Act 2008) has been established and implemented in the start of 2008, but very few Malaysians are aware of it, particularly persons with disabilities and their family or love ones. I am among a group of volunteers trying create greater awareness about Act 685 especially Part IV, Chapter I of the Act.

Part IV Promotion and Development of the Quality of Life and Well Being of persons with disability

Chapter I

Accessibility

Access to public facilities, amenities and services and buildings

26. (1) Persons with disabilities shall have the right to access to and use of, public facilities, amenities, services and buildings open or provided to the public on equal basis with persons without disabilities, but subject to the existence or emergence of such situations that may endanger the safety of persons with disabilities.

(2) For the purpose of subsection (1), the Government and providers of such facilities, amenities, services and buildings shall give appropriate consideration and take necessary measures to ensure that such public facilities, amenities, services and buildings and the improvement of the equipment related thereto conform to universal designs in order to facilitate their access and use by persons with disabilities.

to be continued....

Augmentative and Alternative communications

2009-11-01T21:22:00.000+08:00

Recently, I attended a 31/2 days workshop on Augmentative and Alternative Communication (AAC). In general (AAC) assists people with severe communication disorders. The workshop I attended focused on people with learning disabilities. As the saying goes ' A picture is worth a thousand words', thus pictures are powerful tools for those with restrictions on comprehension or production of spoken or written language. During the workshop our main task was to learn how to create symbols using a software named Boardmaker in order to assists those with learning disabilities to carry out and complete a certain task. Such as laundry, housekeeping, baking, gardening, cookie making and etcetc. In order to produce clear, detail and understandable symbols we began with detail task analysis. Then followed by creating and organising symbols.

For example in a commercial laundry outfit we need to create symbols from the point of labelling between 'soiled' and 'clean' containers, pull the container to '2 feet' behind the vehicle, opening the van door, transfering of soiled linens, pull container to washer, load the washer, close the washer door when its full, choose the preset program, push start button,......buzz...tranfer from washer to dryer...................finally QC, folding, stacking, tying, transfer to van for delivery.

Among the participants in the workshop were teachers in special schools, trainers, employers of people with learning disabilities.

The ultimate aim of project is economic empowerment for people with learning disabilities in Malaysia.

What do you mean ?

2009-10-25T02:24:00.006+08:00

Sometimes, I just cant figure out what people meant when they said 'I don't see your disability'. I wonder whether these people see more of my ability than disability, hence they chose to ignore my disability altogether or.... Were these people blind or what ? Were they so naive as to ignore the fact and pretending that life would be the same for me with my disability? Were they trying to accuse me of hiding behind my disability for not living what they measured as 'meaningful/fulfilling/fruitful/aspiring life' ? Like it or not the disability bit does exists. Isn't it obvious with all the walking frames, crutch and wheel chairs ? without mentioning the daily accessibility issues I am dealt with. I am sorry you have no choice other than acknowledging/accepting the fact that I am disabled. I welcome and appreciate special services offered because others acknowledge my difference and do need help due to my special needs. You can't really imagine what is it like to be in my shoes so don't try. And do not weight my life using your own yardstick.

How we are friends to each other

2009-10-16T13:08:00.002+08:00

A subtitle for this post might be 'How I have meningioma friends or epilepsy friends or disabled friends'.

Its amazing how we formed an instant shall I say bond? or connection? between us. Many of you I have not spent any significant time with. Some of you I have not met in person at all. We barely know each other in 'real' lives. Yet, we are friends. Ours is a friendship of narrated experience, ideas, encouragements and supports. I would love to have drinks with you, go to the movies, have meals.....I probably wouldn't get to do that, sadly. But I find our friendship vital in my life.

I may not see you in your world, but I am there in spirit. I will listen/read more likely to your narrated experience and share my own. Or you may have read about my experience and was trying to relate/identify to your own circumstances. We can and I hope we will engage in the deepest friendship of support. We will learn from each others' experience to bettered our lives.

Happy Birthday Dad

2009-10-10T10:03:00.000+08:00

If Dad were alive, we would be celebrating his 80th birthday today, 10 October.

Dad was famous for his 'kid spoiling character' and was ever playing the good guy compared to Mum and late grandmother. He would never raised his voice towards his children let alone scolding, reprimanding and beating up his children. Dad was super democratic with his children, he would let us carry out whatever we had planned. So we children could make our own decisions most of the time, provided we informed Mum and Dad about our plans. Luckily we never ended up in hot soup! Come to think of it, Dad's style of bringing up children would most likely to spell disasters in families in this century and age.

It still hurts to recall that Dad would buy gifts for any of his children who did well in school. I still remember my first gift was a watch for getting into the top three in class during primary school. If any of us entered into any kind of competition such as singing, calligraphy etc etc in school, Dad would buy us our favorite food as a reward.

I remember Dad liked Malay and Indian cuisine very much, such as curries, (the spicier the better) nasi bryani, nasi lemak, roti canai, teh tarik and tosei. Other than buying 'pisang goreng and kuih' on his way home, Dad would take us out for supper once in a while.

23 years had past since my father passed away, there are times I do missed him still.

Patients with brain tumour

2009-10-06T14:15:00.002+08:00

Higher Risk Of Brain Function Decline When Whole-Brain Radiation Therapy Is Added To Standard Radiosurgery.

For patients with brain tumours, the current method is stereotactic radiosurgery (SRS), which is a technique for administering narrowly focused beams of irradiation to the brain in a very precise manner. This is done with or without whole-brain radiotherapy (WBRT). However, to date it has been unclear whether addition of WBRT outweighed the risks. The article is the work of Dr Eric L Chang, of The University of Texas M. D. Anderson Cancer Center, Houston, TX, USA, and colleagues. The authors conclude that patients given WBRT are at greater risk of decline in learning and memory function. They recommend that SRS plus close clinical monitoring be the standard initial treatment.

Source: The Lancet Oncology

Multiple sclerosis

2009-10-03T17:20:00.000+08:00

The first time I learned about multiple sclerosis or MS was after my eldest sister was diagnosed with it about 10 years ago. Gratefully, besides a certain visible frozen gaits and difficulties dealing with uneven surfaces she was not affected too badly by this sound-horrible disease. My sister is leading a normal life at the age of 55, a home maker and nanny to his grandson. In fact recently she went on a family holiday to Macau and Hong Kong.

However the MS experience is completely different for everyone. I know someone from UK who has had this condition, diagnosed about 10 years ago, unfortunately her condition deteriorated and has been using a wheelchair to go about for the last 4 years. This friend of mine is doing part-time modeling jobs and sometimes in a wheelchair.

The Biwako Millennium Framework 2003-2012

2009-08-30T10:04:00.001+08:00

Lake Biwa is the largest freshwater lake in Japan, in the city of Otsu. It is in this city that the Inter-government Meeting to Conclude the Asian and Pacific Decade of Disabled Persons was held. Hence, the name of the framework is 'Biwako' ('ko' means a lake). The word Millennium indicates that the framework was adopted at the beginning of the new millennium and also that it is structured to supplement the United Nations Millennium Development Goals and Targets. "An Inclusive, Barrier-free and Rights-based Society' represents the guiding principles of this framework. An 'inclusive' society is a society free from institutional, physical and attitudinal barriers, as well as social, economic and cultural barriers. A 'rights-based' society means a society based on the human rights of all individual where peoples with disabilities are valued and placed at the centre of all decisions affecting them.

In the Biwako framework, there are seven priority areas for action.

(1) Self-help organizations of persons with disabilities and related family and parent associations.

Persons with disabilities and their self-help organizations are the most equipped and best informed to speak on their behalf and can contribute to solutions on issues that concern them. By 2004, Governments, international funding agencies and NGOs should establish policy to support and develope self-help organizations. And by 2005, Governments and civil society organizations should include self-help organizations in decision-making processes.

(2) Women with disabilities

Women with disabilities are multiply disadvantaged through their status as women. By 2005, Governments should ensure anti-discrimination measures, where appropriate, to protect women with disabilities. Self-help organizations which include women and girls with disabilities, persons with intellectual disabilities and persons with psychiatric disabilities shold adopt policies to promote full representation of women with disabilities and should be included in the membership of national mainstream women's organizations.

(3) Early detection,early intervention and education

In the Asian Pacific region, fewer than 10% of children and youth with disabilities have access to any form of education. This exclusion from education for children and youth with disabilities results in exclusion from opportunity for further personal, social and vocational development. It was targeted that by 2005, children everywhere, boys and girls alike, will be able to complete a full course of primary schooling. By 2012, all infants and young children will have access to and receive community-based early intervention service.

(4) Training and employment, including self employment

Persons with disabilities remain disproportionately uneducated, untrained, unemployed, underemployed and poor. They have insufficient access to the mainstream labour market partially due to social exclusion, lack of trained and competant staff and adequate training for independent workers. It was included in the framework's target that, by 2010 reliable data on the employment and self-employment rates of persons with disabilities will exist in all countries. And by 2012, at least 30% of all vocational training programs in signatory countries will include persons with disabilities.

(5) Access to built environment and public transport

Inaccessibility to the built environment, including public transport system, is still the major barrier for persons with disabilities. It was concluded that, Governments should adopt and enforce accessibility standards for planning of public facilities, infrastructure and transport.

(6) Access to information and communications, including information, communication and assistive technologies

(7) Poverty alleviation through social security and livelihood programme.

With almost three quarter of a decade gone, questions arise as to how much Malaysia has accomplish in terms of the seven priority areas in the Biwako framework. Well the answers depends very much on whether you were affected by disability issues or other wise.

Happy Independence Day--- Selamat Hari Merdeka

1 Malaysia, Rakyat Didahulukan, Pencapaian Diutamakan

(1 Malaysia, People First, Achievement Emphasized).

US Senator Kennedy dies at 77

2009-08-26T23:06:00.001+08:00

New Straits Times Online

2009/08/26

WASHINGTON: US Senator Ted Kennedy, a lion of the American left and the last of the brothers who dominated US politics for years, has died of brain cancer, his family said Wednesday. He was 77.

Edward M. Kennedy, known as “Teddy,” was a towering, controversial figure whose death late Tuesday night at his home in Hyannis Port, Massachusetts, ended an era when his family appeared born to rule.

“We’ve lost the irreplaceable center of our family and joyous light in our lives, but the inspiration of his faith, optimism, and perseverance will live on in our hearts forever,” his family said in a statement.

“We thank everyone who gave him care and support over this last year, and everyone who stood with him for so many years in his tireless march for progress toward justice, fairness and opportunity for all.

“He loved this country and devoted his life to serving it.” The “liberal lion” of the Senate was the youngest of the Kennedy brothers.

President John F. Kennedy was assassinated in 1963.

Senator Robert Kennedy was shot dead as he campaigned for the 1968 Democratic presidential nomination.

Joe Kennedy, a pilot, died in World War Two.- AFP

The women summit 2009

2009-08-23T23:23:00.000+08:00

A Summit Round table was held in the afternoon session on the summit day. Participants discussed issues which are relevant to women in the workplace and society with the objective of presenting key recommendations to the Minister for Women, Family & Community Development. One of the topics given was regarding marginalized women in society. These women include women with disabilities. These include disabled women either young or old. It could be learning, physical, mental, cerebral palsy, down syndrome, autism, other locomotive disorders, heredity or onset later in life.

Besides the most often talked about topics such as accessibility and inclusion for people with disabilities in general. It was suggested that a task force consists of doctors, midwives, nurses, pediatricians, therapist and social workers must be put up for early detection/intervention in babies/toddlers who developed abnormal symptoms. Preferably before the child reach the age of two. This would ensure the ultimate vision of all parents that their disabled children could lead independent lives at the end of the day.The task force would also make sure an up to date data base is managed for the relevant authorities.

The women summit 2009

2009-08-21T12:50:00.001+08:00

I attended The Women Summit held recently in Sime Darby Convention Centre. Among the issues high-lighted was the lack of women board members in Malaysia. A recent survey by Corston-Smith Asset Management has revealed that Malaysia is at the bottom compared to other Asean countries and Hong Kong in terms of the number of women on the board of public-listed companies. The Philippines ranked highest where 10.3 per cent of directors were female, followed by Hong Kong (7.8 per cent), Thailand (6.7 per cent) Singapore (6.2 per cent), Indonesia (5.5 per cent) and finally, Malaysia with just 5.2 per cent. Why does this happen? Given that women now make up the overwhelming majority of undergraduates in universities.

The question reminded me of a scenario when I was an undergraduate in UKM. My dorm mates and I were chit-chatting in a group. We arrived at the question of what would each of us like to do after we graduate. I mean its normal to listen to aspiring and ambitious plans after spending a few years studying for a degree, but we got to hear two very unique answers. Both said they plan to balik kampong (return to hometown) get married and be full time housewives. My point is if we are really serious about getting women on board shouldn't we consider including questions like 'What is your plan after you graduate? or 'Where do you see yourself in 5 years'?
in the application forms to various institutions of higher learnings

I am left-handed too

2009-08-17T22:38:00.000+08:00

Despite 13 August being the International Left-handers Day. I didn't know such a day exist until now. Since very young I was taught to write and eat using my right hand. I played racket games, sports, using knives and scissors with my left hand (when my parents and other elder family members were not around)! Because all my siblings are right-handed, my mother used to say to me" Aiyo! How can you cut nicely by using your left hand"? I would just shrugged my shoulders and showing a smug look along the way. For me being left-handed might be a blessing in disguise because the brain tumour rendered the body muscles on the right weaker and the functions on the right is not as efficient as on the left of the body.

Stairs climbing skills

2009-08-13T15:16:00.001+08:00

The week ahead

2009-08-07T10:00:00.001+08:00

After lunch today, I will be travelling to Kuala Trengganu via flight MH 1336 and return to Kuala Lumpur on Monday via morning flight. The purpose of the trip is to participate in voluntary work conducted by BAKTI-MIND Project.

We will be celebrating Grandma's 31st and Dad's 23rd death anniversary on Tuesday.

On Wednesday I need to attend a regular but seems all-important Neuro appointment.

Then on Thursday is back to physiotherapy and I will be looking forward to hydrotherapy.

And...... it would be weekend again!

Invisible disabilities

2009-08-01T13:26:00.001+08:00

The universal sign of disability is a wheelchair logo. Whenever people see somebody using wheelchairs or walking aids they recognized immediately that these are persons with disabilities and gave special treatment either good or bad. What about those living with invisible disabilities ? Such as deaf, learning disabilities, extreme fatigue, dizziness, chronic illness and pain. Cognitive impairment like poor mental function, associated with confusion, forgetfulness and difficulty concentrating are examples of invisible disabilities. Do these people have to use aids before the society accepts them as persons with disabilities.

Walking Tall

2009-07-28T20:30:00.003+08:00

New Straits Times 27 July 2009

By: Meera Murugesan

Most of them may not be able to walk, but they hold their heads up high. MEERA MURUGESAN speaks to four disabled persons about starting over.

WHEELCHAIR-bound she may be, but it’s her infectious smile and open, friendly face that people first notice when they meet Bathmavathi Krishnan.

In fact, her positive attitude belies the fact that she has experienced personal tragedy.

But as someone who once spent her life as an able-bodied person, Bathmavathi understands only too well the hurt and pain of losing the ability to walk, the one thing many of us take for granted.

When she was just weeks away from turning 21 and her life seemed full of possibilities, Bathmavathi had to face the fact that the rest of her days would be spent in a wheelchair.

Some people never recover from such a blow but for Bathmavathi, it was the start of a courageous journey to regain her life.

Bathmavathi, now a retired librarian, was a second-year undergraduate in Universiti Malaya when an accident left her permanently disabled in 1975.

A campus bus driver lost control of his vehicle and slammed directly into her and a few other students waiting on the pavement.

Bathmavathi, an active sportswoman, was dragged under the vehicle, and suffered severe injuries. The news that she was paralysed soon followed.

She spent her 21st birthday in hospital, having only one wish when she blew the candles on her cake — that she would walk out of the ward on her own.

Her wish didn’t come true. Instead, what followed was the most emotionally and physically challenging period of her life.

“Sleep was the only escape I had from the reality that I would never walk again but I tried to be brave for the sake of my family who were devastated by what had happened.”

Eight months in hospital and intensive physiotherapy followed, and Bathmavathi eventually regained her strength to move back into campus and resume her studies.

But going back to familiar haunts in a wheelchair proved very emotional. Just looking at the pavement where she once walked brought tears to her eyes.

Two years after her accident, the death of her mother left her severely depressed and she contemplated suicide. It was only the thought of the hurt she would cause her siblings which stopped her from ending her life.

Still in pain and unable to sit up for longer than two hours at a time, Bathmavathi prepared for lectures and exams, and eventually graduated. She also learned to drive using a modified vehicle and was eventually offered a job at the Universiti Malaya library. She opted for retirement in 2004.

These days she keeps busy as President of the Association of Women with Disabilities Malaysia. She also writes for a magazine which focuses on disability-related issues and is a member of Toastmasters.

“God gave me a second chance after that accident and I’m grateful. I still remember what it’s like to walk though, to feel dew on the grass and soft sand on the beach. Those memories, no one can take from me.”

Ibrahim Surin also understands the challenge of starting life from scratch after a tragedy.

In 1990, aged 20, when he was on his way to work on a motorcycle, he was hit from the rear in an accident that caused him to slam directly into a tree. Ibrahim was in a coma for two weeks and spent seven months in hospital, six of them, completely bedridden.

Devastated by the news that he would never walk again, Ibrahim became severely depressed and for four years, remained at home, avoiding contact with people and losing touch with all of his friends.

“At 20, all I could think of were the things I would never be able to do. I couldn’t accept the turn my life had taken.”

His family members never gave up on him and were extremely patient when he was gripped by anger or frustration over his condition.

Ibrahim’s concern was that he would never be able to work and support his parents but when he was eventually offered a job as a clerk with a leading accounting firm, his confidence slowly took root again.

He has been working with the firm for 15 years and today, has found the stability that he once sought in life but thought would never be possible after the accident.

“I thought people would never be able to see beyond my disability but that isn’t true. It wasn’t an easy journey but I learned to put my life back on track again.”

V. Murugeswaran was a young man when a motorcycle accident in 1988 left him wheelchair-bound.

Initially, he refused to accept his condition and was hoping against hope that doctors would be able to do something to help him walk again.

When he was eventually moved to a ward for patients with spinal injuries, the reality of his situation hit home hard.

“I saw the wheelchairs and thought to myself, this is not the life I want. My world is different. I don’t want to be a part of this world.”

Murugeswaran, whose father died when he was 14, had always worked to support himself, even as a schoolboy, but now faced the prospect of being dependent on others. A job offer from a group of friends brought a ray of hope. That, and the fact that he learnt to drive and was soon mobile.

For the first time since the accident, he felt confident that he could be gainfully employed.

He eventually got another job as a telephone operator at a trading company, convincing the management to take him on despite the fact that they were looking for a female employee and did not have a disable-friendly environment.

He remained there for 15 years, getting promoted along the way and picking up invaluable computer knowledge.

He also found time to become an advocate for the rights of the disabled and is one of the founding members of the Damai Disabled Persons Association of Selangor & Wilayah Persekutuan.

Now working as a customer care coordinator and recently married, Murugeswaran has much to look forward to.

“I couldn’t see it then, but the accident was an opportunity not just to make changes in my own life but in the lives of others as well. Through Damai I have had the opportunity to impact the lives of other disabled people in a positive way.”

For Jackie Ng, it wasn’t an accident but illness which robbed her of life as she knew it.

She was 32 and working as a buyer for a large departmental store when she started having headaches which became increasingly severe.

A scan revealed a tumour in her brain and in 1998 Ng underwent surgery to correct the condition. But a recurrence of the problem in 2000 and eventually a seizure left her paralysed on the right side.

Her condition completely changed her once active life. She went from being a young working woman with career goals to someone who struggled just to take a step.

Ng too sunk into depression and for almost four years became reclusive and withdrawn.

“Like anyone else, I asked why me? I hadn’t committed a crime or murdered anyone, so why did this happen to me?”

But towards the end of 2005, Ng came to a realisation. She faced up to the fact that she had many years ahead of her and she didn’t want to spend them in isolation.

After intensive physiotherapy, Ng regained the use of her right hand but her right leg remains affected.

Her family rallied around her and Ng drew strength from their love and support. Her life still revolves around physiotherapy and exercises to strengthen her muscles but Ng now also works from home doing translation work and gives tuition as well.

She can now walk with the aid of a walker, though a wheelchair is still necessary when she goes out to places such as shopping complexes.

Although Ng would love to drive her own car and be completely independent, the fact that she suffers from fits has made that goal impossible.

But she rarely lets anything lower her spirits these days. She has come too far and struggled too much to let anything bring her down. Her illness awakened her to the fact that she has a fighting spirit.

When Meera from NST approached me for an interview, she told me that her purpose was to find how previously abled-bodied turned disabled people cope with life after disability. I think for a grown up to start life by learning pretty much everything from scratch is never going to be anyone's first choice of lifestyle. But what choice do we have at the end of the day other than adapt to these totally new lifestyle? We just get on with it by hook or by crook. We are not trying to be inspirational or anything. We just wanted to lead normal and comfortable lives. Of course how people react to their disability depends a lot on the stage in life when disability happened whether they were in teens, 20s, a student or someone just kicked start on a career path. But there is a quite similar process every abled-bodied turned disabled have to go through which is - Denial-Anger-Grief-Depression-Acceptance

D- day 1 August 2009

2009-07-21T22:43:00.003+08:00

Come 1 August commuters taking buses and taxis will deal with another blow to their pockets when bus and taxi fares increase by 30%. The taxi fare hike will further burdened those who are not well served by public transport system and rely solely on taxis to get from Point A to Point B. This group consisted of mainly the less mobile, such as the elderly or disabled who are already facing higher medical costs than most people.

The fare hike will ultimately result in the disabled trying to cut transportation cost and venture out less. I am wondering how would the fare hike affect the disabled group's participation in society which is already at a very unsatisfactory level. As a matter of fact I am considering whether to reduce the physiotherapy appointments to once a week from twice weekly and I will think twice before going anywhere beginning August.

My family - My treasure trove

2009-07-19T15:52:00.002+08:00

All the while I didn't realized I was born into a priceless treasure trove until the day illness struck. My family- my treasure trove.

The diagnosis of brain tumour in 1998 shocked everybody around me especially my mom and siblings. Very soon the shock turned into worries and fear. Worry due to the uncertainty of the type of tumour inside my brain whether it was cancerous or otherwise. Fear because the unpredictable outcome of a brain surgery which was considered a major op like no other. On the surgery day my mom and siblings waited anxiously outside the operating theater. It was a long wait for them 7-8 hours. While the others waited, my younger sister chose to do some retail therapy to release her stress and tension, she went shopping for a wig that suits me. When she came back I was still inside the operating theater.

The worries and fear soon turned into relieved after the surgery. Six months later everybody was so happy that I was capable of driving to work again.

Unfortunately, they were literally thrown off balance after I experienced a fit and lived with paralysis in 2001. The period between 2001 and 2004 was a challenging time for mom, my siblings and me because paralysis is chronic. In the beginning stress was everywhere and part of our daily lives. My heart felt gratitude to mom and my siblings for their patience and understanding. I know there were times when my behaviour was quite intolerable such as throwing tantrums, like to be left alone, teary and just being eerily quiet. I was very lucky not being abandoned and developed mental illness.

Fortunately after some lengthy and emotional conversation and thorough thinking I came to my senses and here I am. Thank you my family you have been marvelously supportive.

Staying motivated while living with disability

2009-07-16T22:37:00.002+08:00

Living with a disability brings extra challenges to daily living. Imagine the choices I made when I initially joined the disabled community about 10 years ago. There were times when I had to take nearly 2 hours before getting out of the house ( and we are not talking about putting up make ups or dress to kill here). Everything could seem a challenge, from getting out of bed, getting to the bathroom, brushing teeth, taking bath, feeding myself meals to how and where to position some of the most basic things such as chairs and mobility aids. What choice do I have ? I could choose to feel sorry for myself and to live the rest of my life in misery or to just get on with it . I soldiered on despite difficult times. Once I have done a certain task a few times, I just do it again and again until it becomes easy. Even now if it is something new which I want to carry out by myself, first I need to come out with a plan, then I will do an experiment, if things workout according to plan then I will keep practicing. If Plan A didn't work out I will have to work on Plan B or sometimes Plan C and do the experiments again till I get the best method.

Having supportive family and friends is a key element in maintaining motivation. Family members' relieved and happy faces whenever I made any progress proved vital for me. Besides family, health professionals' approval and positive comments was also an encouraging factor. Whenever I met up with friends they noticed and commented on the obvious progress. Knowing there are so many who care made me more determined in avoiding letting them down, thus I tried even harder to overcome any obstacles.

In addition the desire to improve self-esteem, to feel good about myself drives me to want to enjoy life. All these years I remain positive to avoid being sucked into self-pity parties. On top of that there is this desire to make the most out of circumstances. Having disabilities often gave me a higher satisfaction in the ability to accomplish of what I can do with the functions I have. This satisfaction gives ample motivation to achieve happiness in life.

The Pavillion Kuala Lumpur

2009-07-15T17:42:00.002+08:00

The Pavillion crystal water fountain at 12.10PM today

Food adventure

2009-07-12T18:33:00.001+08:00

My taste of food was very limited. All the while I was a bit particular about food. I would choose food which are healthy and good for my diet. I avoid eating bad foods which are oily, deep fried, barbecued, salty, too sweet, dry, and high in calorie. For years carbonated drinks, ice-creme, chocolates and all types of junk foods were off limits for me.

Due to my discipline diet I found myself rather boring when it comes to any discussions regarding food. This coupled with the desire to be more adventurous, Chun Peng and I have embarked on some sort of food adventure recently. Chun Peng knows about all the eating places which I missed out before and she agreed to take us (sometimes Mom will join) to have meals at these outlets.

Even though I want to be adventurous I am still conscious of the amount and quality of food being consumed. Therefore we have agreed to eat out once weekly. Last Sunday we had roti canai and nasi lemak for breakfast. During our meals we would planned ahead as to what and where to eat the following week. It can either be breakfast, lunch or dinner. I preferred breakfast or lunch due to the short time span between dinner and bed time. (not wanting to go to bed with a heavy stomach).

Today we had lunch at Mcdonald's, a fast food joint which I have not frequented for about 20 years. Next Saturday we planned to have 'ayam rempah'-spiced chicken for dinner. We have planned to visit another fast food joint the following weekend !

Good & Bad Walking Days

2009-07-12T17:23:00.001+08:00

Some people are subjected to 'good hair days' and 'bad hair days' but in my case it is more likely to experience 'good walking days' and 'bad walking days'. On a 'good walking day' I could walk slow and steady. Whereas on a 'bad walking day' I was inclined to lost balance and needed frequent stops to readjust my balance. This morning was a 'bad walking day' for me and I spent a little bit more time (5-10 minutes) than usual to cover the same distance.

Obesity and Mental Illness

2009-07-10T18:16:00.000+08:00

Mental conditions such as bipolar disorder, schizophrenia, obsessive-compulsive disorder, depression, and other disorders often wreak havoc on the individual as well as his or her family and friends. In some respects, the fact that there are no visible signs of a disability makes it even more difficult for many people to understand the magnitude of psychological pain that a person may be experiencing within his or her own mind, which often results in friends and family members removing the person from their social network so they don’t have to deal with the high and low cycles associated with mental illness. To add to the stigma associated with mental illness, certain drugs used to keep symptoms under control increase obesity and metabolic syndrome, leading to several other health complications.

Studies showed that there is enormously higher rates of obesity observed in people with mental illness, metabolic syndrome is also substantially higher in persons with mental illness compared to the general population. Metabolic syndrome consists of five indicators that increase the risk of heart disease, stroke, type 2 diabetes, abdominal obesity (excess body fat around the waist), high triglycerides (blood fats), low HDL (the good type of cholesterol that protects your heart), high blood pressure and glucose intolerance (body can’t properly use insulin or blood sugar).

Studies also showed that , the percentage of obesity and metabolic syndrome in people with mental illness has been reported to be more than two times higher in women and almost twice as high in men compared to the general population.

The relation between depression and obesity is mainly due to that some of the medications used to control the symptoms associated with mental illness were linked to significant weight gain and metabolic syndrome. However, the expert panel also noted that some of the newer medications had less weight-gaining side effects compared to some of the more traditional, first-generation medications. Obesity and metabolic syndrome can cause as much harm to the body and psyche as the condition itself.

As such exercise and good nutrition remain the cornerstones of treatment for battling the elements of weight gain and metabolic syndrome. Despite the challenges in motivating many people with mental illness to begin a regimen of proper diet and regular exercise, there are opportunities to encourage healthier lifestyles in this often misunderstood group. One of the key elements in managing the effects of weight gain in mental illness is adding structure to the day, something that can be achieved with a regular dose of exercise.

Source: NCPAD newsletter

Aerobics Helps to Keep Brain Young

2009-07-09T17:57:00.002+08:00

Aerobic activity may help keep the brain young, says a new research from the University of North Carolina at Chapel Hill School of Medicine. In a study published in the American Journal of Neuroradiology, physically active elderly people showed healthier cerebral blood vessels.

Researchers led by Elizabeth Bullitt, M.D., Van L. Weatherspoon Distinguished Professor of neurosurgery, used non-invasive magnetic resonance (MR) angiography to examine the number and shape of blood vessels in the brains of physically active elderly people, 7 men and 7 women, ages 60 to 80.

The study subjects were equally divided into 2 groups. The high activity group reported participating in an aerobic activity for a minimum of 180 minutes per week for the past 10 consecutive years, and the low activity group told investigators they had no history of regular exercise and currently spent less than 90 minutes a week in any physical activity.

Aerobically active subjects exhibited more small-diameter vessels with less tortuosity, or twisting, than the less active group, exhibiting a vessel pattern similar to younger adults.

The authors, who were sponsored in part by the National Institutes of Health's National Institute of Biomedical Imaging and Bioengineering, identified significant differences in the left and right middle cerebral artery regions confirmed by more than one statistical analysis.

The brain's blood vessels naturally narrow and become more tortuous with advancing age, but the study showed the cerebrovascular patterns of active patients appeared "younger" than those of relatively inactive subjects.

The brains of these less active patients had increased tortuosity produced by vessel elongation and wider expansion curves.

Source- Medindia

A minor setback

2009-07-07T14:14:00.001+08:00

Come end of July, I would be celebrating my one year epilepsy free by obtaining a driving license. I was getting rather excited as we are in the month of July and pretty soon it would be the end of July. All the excitement fazed when I experienced an epilepsy on Monday the night of 6 July. It happened at about 9pm, at the time I was sitting down and watching the TV when I felt a tickling sensation on my right leg, followed by a feeling of involuntary convulsion, luckily the actual convulsion did not occur but I did feel the numbness in my right leg. The whole episode was over less than 3 minutes and so did my plan of obtaining a driving license.

As usual the occurrence of fits weakened my right leg but I turned up at the Hydrotherapy Department as scheduled on Tuesday morning. The therapists were puzzled by my unstable condition because my right foot kept turning outwards while walking and my face hit into the water more than usual as I tried to carry out my routine. Then I explained to them about the epilepsy episode the night before they were naturally regret and concerned and asked for more details. I heard my own voice cracked despite of myself before telling the therapists that I intend to work off the weakness and I need no more than one day to recover.

Water walking

2009-07-05T17:48:00.001+08:00

Due to the law of water buoyancy and gravity I was able to walk in the deeper end of the pool (4-4.5 ft) without falling. The therapists had since asked me to worked out the in the shallow end (2.5-3 ft) of the pool. Initially I fell down very often and due to weakness of right leg was unable to get up without assistance. As I adapt in the process of falling down and getting up, I tried to avoid falls at all cost but sometimes it happened so fast and was over before anything could be done my face still smack into the water ! Throughout all these gradually I managed to learn the recovering skill, which is fall and recover. Blessed me I am almost there.

One of the signs of my improving coordination is that I am able to talk while doing my exercise without losing balance. I was joking with the therapist the other day that I walk like a robot in water, my movements, strides and motion of the right leg seem unnatural. The therapist explained to me that the most important thing is the ability to walk, given time some unaesthetic details can be improved.

Water walking has trained up my confidence to walk on land using a crutch. I can now managed at least 1 meter without assistance. However the condition of surface has certain influence on my walking ability.

Equation for happiness ?

2009-06-30T18:30:00.001+08:00

Reseacher have formulated an equation to calculate a day's happiness rating.

The equation is : O + (N x S) + Cpm/T + He.

The experts added outdoors (O) to nature (N) multiplied by social interaction (S), then added childhood memories (Cpm) divided by temperature (T) plus excitement about holidays (He).

I am puzzled as to what value should be used for the symbols? Does the greater the product also means a happier day or vice versa? How would the denominators affect the outcome?

Chinese calligraphy

2009-06-26T15:50:00.000+08:00

Whenever I come across these calligraphy work which was written by me some time before the diagnosis of brain tumour, I couldn't help but wishing I would be able to produce something close to these in the future.

The Donkey Attitude

2009-06-24T13:06:00.000+08:00

One day a farmer's donkey fell down into a well. The animal cried
piteously for hours as the farmer tried to figure out what to do. Finally,
he decided the animal was old, and the well needed to be covered up
anyway; it just wasn't worth it to retrieve the donkey.

He invited all his neighbours to come over and help him. They all grabbed
a shovel and began to shovel dirt into the well. At first, the donkey
realized what was happening and cried horribly. Then, to everyone's
amazement he quieted down.

A few shovel loads later, the farmer finally looked down the well. He was
astonished at what he saw. With each shovel of dirt that hit his back, the
donkey was doing something amazing. He would shake it off and take a step
up..

As the farmer's neighbours continued to shovel dirt on top of the animal,
he would shake it off and take a step up. Pretty soon,
everyone was amazed as the donkey stepped up over the edge of the well and
happily trotted off!

Moral of the story - What can't kill you is only going to make you stronger

Life is going to shovel dirt on you, all kinds of dirt. The trick to
getting out of the well is to shake it off and take a step up. Each of our
troubles is a steppingstone. We can get out of the deepest wells just by
not stopping, never giving up! Shake it off and take a step up.

Happy Father's Day Dad

2009-06-20T12:22:00.001+08:00

Though you have left us 23 years ago, every year come Father's Day, your birthday and anniversary I missed you all the same.

I missed your loving gestures
I missed your democratic style
I missed your generosity and kindness
I rather missed your hot tempered- you used to get angry very fast but the anger would subside as soon as it came, regardless of what had caused it
You lived at your own pace and free of worries
You sometimes got into trouble because of your unassuming and unsuspecting character
Sometimes I blamed myself for failing to keep an closer eye on you health issues and your overall well being
I know you would forgive me no matter what
Do Rest In Peace, Dad

I Believe

2009-06-19T17:36:00.001+08:00

I Believe...
Just because two people argue,
it doesn't mean they don't love each other.
And just because they don't argue,
it doesn't mean they do love each other.

I Believe..
No matter how good a friend is,
they're going to hurt you every once in a while and
you must forgive them for that.

I Believe...
True friendship continues to grow, even over
the longest distance..

I Believe..
You can do something in an instant
that will give you heartache for life.

I Believe...
My best friend and I, can do anything, or
nothing and have the best time.

I Believe...
Maturity has more to do with what types of experiences you've had
and what you've learned from them and
less to do with how many birthdays you've celebrated.

I Believe...
No matter how bad your heart is broken
the world doesn't stop for your grief.

I Believe...
Our background and circumstances may have
influenced who we are, but.
we are responsible for who we become.

I Believe...
Credentials on the wall do not make you a
decent human being.

'The happiest of people don't necessarily have the best of everything;

they just make the most of everything.'

Custom made for the disabled

2009-06-16T12:11:00.003+08:00

Like the able-bodied, disabled people can suffer from lifestyle diseases such as obesity, heart disease and hypertension due to the lack of physical activity. To avoid these illnesses the disabled must try their best to get some kind of exercise. There are various basic and recreational exercise which are custom made for the disabled. While basic exercise include the movement of the limbs and other body parts, recreational exercise include paracycling, wheelchair tennis, wheelchair basketball, wheelchair volleyball, sitting volleyball, wheelchair fencing, para swimming, archery and lawn bowls. Of all the recreational exercise cycling and wheelchair basketball are among the most popular choices. There are a few types of bikes for paracycling these include bicycle with stabilizer, hand cycle, tricycle, quadcycle and tendom bikes. Wheelchair basketball can be played on normal basketball courts, all the players need is a basketball and a wheelchair.

Good, well, happy & healthy

2009-06-11T15:21:00.003+08:00

Almost everyday we read about things we already know or thought that we understood them perfectly well. But being mere mortals we don't always put into practice what we comprehend. Hence sometimes reminders are needed to refresh our way of understanding, thinking, analyzing and dealing with uncertainties given any circumstances.

During one of our conversations my friends and I touched on the topic health. We concluded that in order to stay healthy, we have to stay happy, positive and wise. For one can't expect to have a healthy body if he is lazy, gluttony, negative and immerse in ill thoughts. This is due to the human body is made up of cells and tissues. At the same time the human body possess basic healing process called immune system. These naturally healthy cells and tissues would be destroyed by any negative emotions, feeling and thoughts that exist. This will lead to a less than perfect immune system and various illness will surfaced : such as hypertension, diabetes, obesity, depression and mental illness.

Then and now

2009-06-07T18:45:00.002+08:00

During a recent conversation with a few of my university mates. Some of us couldn't help but lamenting how our lives have turned out after we left university. One told of how some belong to the noisy group in the dormitory, the noise they made travelled several blocks. Those noise was a result of joking, laughing, singing, playing guitar and teasing among each other. At the same time we expressed grief and loss over the dead of one very musical-talented and soft-nature girl in the group, she was in her early 30's when she died. We took the opportunity to update each other on how our uni-mates are doing. There are certain ambition-driven ones have continued to climb the corporate ladders, surprisingly there are others who were not as motivated by ambition are climbing the ladder as well and yet there are the aspiring ones who are contented to be home makers. Who would have imagined the events as it turned out today? Its totally beyond the imagination of a bunch of under grads who are in their early 20's. Well this is life. Take it in your stride whatever happens.

Three Exceptional stories

2009-05-27T17:09:00.002+08:00

Lets read the stories of three Malaysian women who survived brain surgeries. These stories are against 3 different backdrops and their respective outcome couldn't be more distinctive.

1. The story of Grace

2 The story of Yvonne Foong

3.The story of Jackie

My Journey With Meningioma

2009-05-22T17:25:00.002+08:00

In 1998 the diagnosis of brain tumour caused shock, fear and despair in my active, happy and productive life. I was plunged into unfamiliar medical surroundings and a future full of uncertainties. My vocabulary was soon acquainted with words such as 'brain tumour, malignant, benign, meningioma, craniotomy, neurosurgeon, neurologists, hematologist'. Life has been an emotional and a challenging journey since. Recollecting events which took place throughout the long, winding and lonely journey made me feel glad and proud to be a brain tumour survivor. 20 November 2008 marked the 10-year anniversary of my second chance in life. As I have past the half way mark towards the 11 year-anniversary, still very much alive, as happy and healthy as I possibly could, I have decided to celebrate by sharing the story throughout this difficult journey with my friends.

I am delighted to share that my e-book entitled 'My Journey With Meningioma' is published electronically at http://www.myjourneywithmeningioma.com
The e-book is downloadable at an affordable price of RM18.00 only.

I have been determined, motivated, positive and disciplined so far in my quest to achieve full mobility or as mobile and independent as I can. Your support would certainly spurred me on and encourage me further in my ultimate goal.

Dear Mother

2009-05-09T21:05:00.006+08:00

She has never received any formal education but
She is my pride and joy, pillar of strength and inspiration,
I love, respect, salute her with all my heart,

The sacrifices she has made for the family,
Her prudent way of bringing up her children,
Her insistence that daughters must be well equipped with domestic skills,
so much so that they have to be both presentable,
from the living room to the food they prepared in the kitchen,
so that they will one day become good wives and mothers,
Because of that she is rather strict and critical of her daughters' domestic capabilities,
But I don't complaint, knowing what she did was for our own good,

She showed what a mother could do for her children when,
She tirelessly cared for her once bedridden daughter,
I will never forget the support, tears, anguish, anxiety and how the worried eyes looked,
I knew she felt much heartache whenever I showed glimpses of pain or discomfort,

I am very proud of her,
Although illiterate she never gave up,
She takes the initiative to ask questions whenever she wants to find out something,
Even it's only a pronunciation,
She learned from her grandchildren whenever her children was not around to teach,

I promised never to let you down Mom.

Nobody knows of the work it makes,
Nobody knows of the steps it takes,
To keep the home together,
Nobody knows but mother.
Happy mother's day to all mothers.

Simple Partial Seizures Often Refractory in Patients With Treated Brain Tumours

2009-05-05T17:48:00.000+08:00

By Andrew Wilner, MD

SEATTLE, Wash -- May 2, 2009 -- Simple partial seizures may be intractable in patients with primary brain tumours, according to a 10-year retrospective review presented on April 29 at the American Academy of Neurology (AAN) 61st Annual Meeting.

Samuel Goldlust, MD, New York University Comprehensive Epilepsy Center, New York, New York, and colleagues compared the clinical course of 56 patients seen at their institution from 1997 to 2007.

Of the patients, 30 (mean age, 39 years) had primary brain tumours and seizures and 26 (mean age, 31 years) had intractable epilepsy without primary brain tumours (control group).

Brain tumour pathology consisted of 19 astrocytomas (9 high grade, 10 low grade), 7 oligodendrogliomas (2 high grade, 5 low grade), and 4 mixed gliomas (3 high grade, 1 low grade).

Pathology in the control group included hippocampal sclerosis (n = 11), cortical dysplasia (n = 11), and gliosis (n = 4).

Patients were followed for at least 1 year after surgery. Patients with nonepileptic seizures, noncompliance, unstable imaging, long-term epilepsy associated tumours, corpus callosotomy, multiple epileptogenic foci, or biopsy only were excluded.

One year after surgery, all partial complex and secondarily generalised seizures were eradicated in the primary brain tumour patients, but these seizures persisted in 54% of the control group (P = .008).

However, simple partial seizures persisted in 47% of the brain tumour patients and only 12% of the control group.

Dr. Goldlust observed that nearly all of the simple partial seizures that were controlled in the patients with primary brain tumour responded to 1 or 2 antiepileptic drugs, alone or in combination.

The reason for the refractory nature of simple partial seizures in the primary brain tumour group could not be explained.

Because multiple drug treatment often results in sedation and other toxicity, leading to decreased quality of life, Dr. Goldlust advised against trying more than 1 or 2 antiepileptic drugs in patients with primary brain tumours and persistent partial seizures.

More options for less invasive brain tumor surgery

2009-05-04T17:19:00.001+08:00

The type of brain tumor can determine whether entry through the nose or the eyebrow is the best approach for minimally invasive "keyhole" surgery to remove the tumor, a new study finds.

Both approaches have advantages over traditional open-skull surgery, such as far less bone removal, brain exposure and brain retraction. Patients who have the minimally invasive surgeries typically recover faster and have excellent outcomes, according to background information in the study. But it hasn't been easy to determine which minimally invasive technique is best for a particular patient.

"With recent advances in micro-instrumentation, endoscopy for visualization and computerized surgical navigation, keyhole approaches are often used to remove brain tumors traditionally requiring much larger, more extensive craniotomies," study senior author Dr. Daniel F. Kelly, medical director of the Brain Tumor Center at Saint John's Health Center, Santa Monica, Calif., said in a news release.

"Going through the nose or eyebrow gives surgeons two very different minimally invasive routes to reach the same intracranial region," Kelly said. "Until now, no one has done an ongoing comparison of these two approaches. Our experience suggests that, in many cases, either route can be used, but for particular tumor types, the eyebrow route had advantages over the endonasal, and vice versa."

The study included 43 patients with benign brain tumors called craniopharyngiomas (22 patients) or meningiomas (21 patients). Both types of tumors arise in the skull base near the optic nerves and pituitary gland and can cause problem such as vision loss and hormonal dysfunction.

"We found that most craniopharyngiomas can be approached from below, through the nose, while large meningiomas are best approached from above, through the eyebrow," said Kelly, who added that "surgeon experience and the specific tumor anatomy will be the deciding factors in choosing the best approach."

The study is published in the May issue of Operative Neurosurgery.

Out of touch

2009-04-30T13:50:00.002+08:00

Very interesting indeed, certainly worth a few serious thoughts . A column by Anthony Thanasayan, a wheelchair user and municipal councilor whose pets served as carers and companions.

Do the authorities really understand the needs of the disabled?

HAVE you had one of those mornings when you wake up and the first thing that you read in the newspapers is a really silly remark that is bound to get everyone upset?

Well, last week was one such occasion.

A front-page story in a local newspaper on April 22 quoted the Welfare Department as saying that Malaysians with disabilities who come under the very poor category wanting aid of RM150 a month won’t be qualified to get it if they have Astro.

The guideline is said to apply even for someone who lives in another person’s house, whether temporarily or otherwise.

In other words, those who came up with such a ruling seem to think that the disabled who can afford pay TV are not poor. And, according to them, welfare aid should only be given to those requiring food, clothing and shelter, and certainly never for entertainment.

This reminds me of a similar situation a few weeks ago that had disabled dog owners howling in protest.

A local council decided against giving disabled residents free dog licences. The reason for doing so was purportedly to “teach the handicapped about the need for administration costs”.

They reckoned that if a disabled person can keep a dog, why can’t he pay RM10 a year?

It makes me wonder how truly in touch are the authorities with what people with disabilities go through daily in their lives, and especially in their homes which are often concealed from the public eye.

Take, for example, a man who became disabled following a car crash a few months ago, and is suffering from depression. Why would he want to learn about processing fees when he is thinking about ending his life?

Becoming paralysed for life is never an easy thing to accept. It is especially hard for those who have been very independent.

Not only does disability rob a person of his dignity to do things for himself, the situation often results in the disabled losing his job as well.

Despite the Welfare Department’s noble efforts in trying to help disabled Malaysians find jobs so that they can be self-sufficient, not many people want to hire the handicapped.

Many people are still bound by negative stereotypes about the disabled. Life is especially hard for the bedridden. Many of them hardly have any opportunity to go out.

Quite a few of them have no one strong enough to carry them out of their beds and back again.

They have to depend on others for everything. Their only “entertainment” is often to stare at the four walls of their room.

For those who have pets, these pets serve to divert them from their depression. By stroking and bonding with their pets, the disabled receive unconditional love and acceptance.

In the area of entertainment, Astro offers the disabled a window to the outside world and keeps them updated on what is happening around the world.

It is important for disabled Malaysians who are locked inside their homes to realise they are not alone in their struggles.

I have watched health shows which offer the latest information on all types of disabilities. Such information is helpful to the handicapped.

Watching how others cope with their disabilities and live positive lives in other countries, helps motivate people with handicaps in our country.

Even the blind “watch” TV. I know many who tune in daily to international news channels on pay TV to keep abreast of news-breaking events around the world.

Isn’t access to information and education also a basic human right? Would the Welfare Department stop aid for disabled people with computers and Internet access as well?

Something is obviously very wrong with the guideline. Instead of appearing to crack down on the helpless disabled poor, the Welfare Department should really be working hard to help all disabled persons in Malaysia to have such facilities.

The department should engage in talks with Astro to provide free subscription to the disabled as part of the company’s social responsibility.

On the day that the article came out, about 20 disabled people in wheelchairs – including me – met up with Women, Family and Community Development Minister Datuk Seri Shahrizat Abdul Jalilf.

She promised us that she would look into the matter and come up with realistic solutions to our problems.

Disabled persons

2009-04-28T18:42:00.002+08:00

While many of the disabled persons' stories I shared here are inspiring, there are exceptions. Especially when most of these inspiring stories emerged from North America and Europe. In a large part of Asia, the vast majority of the region's disabled people live cut off from society and experience financial difficulties. Without a minimum level of education, knowledge and some kind of financial background, a low income family is considered doomed when there is a disabled person within the family, whether the person is born disabled or become disabled later in life. The family would have a hard time coping with the extra expenses required to provide for a disabled person's basic needs not to mention any recreation activities or special programmes. This situation is partly due to a lack of awareness among the society at large. Many disabled people are unaware of their basic rights and rights which come with disability laws and regulations. This has led to lack of proper enforcement in legislation and policies concerning people with disability.

Riding and Inspiring

2009-04-26T12:40:00.000+08:00

by Dave Tompkins

When his brothers began riding motorcycles, 7-year-old Todd Macke wanted one too. Despite being deaf and limited by cerebral palsy and spinal scoliosis, he knew he could ride.

"My legs weren't strong enough to hold up a two-wheel cycle or walk, so my father gave me a three-wheeler for my birthday and adapted it so I could ride with them," recalls Macke, now 36, of Decatur, Ill. (pop. 81,860).

The all-terrain vehicle (ATV) improved Macke's coordination, and an operation on his Achilles' tendons straightened his feet and strengthened his legs so he could walk. His stronger legs made riding easier, and soon he was racing-and beating-his brothers.

Today, Macke races ATVs competitively, and his inspirational story and efforts are helping others realize that riding isn't just for the able-bodied.

Macke founded Ability Riders of Tomorrow (ART) last year to encourage people with disabilities to test their boundaries, and to provide equipment and financial assistance to disabled ATV riders and racers.

"There aren't any people with disabilities in the reality shows like Survivor or in extreme sports," Macke says. "I'm racing to broaden the horizons of the disabled community, and help others see that disabled people can do a lot of the things that able-bodied people can."

Last November, Macke received donations for every lap he completed in the Maxxis' 12 Hours of ATV America, an extreme endurance race in Greenville, Texas. He surprised himself, his competitors and sponsors with his fifth-place finish. The effort raised $2,000 for ART, which he used to purchase safety gear and ATV equipment, and to pay racing and travel expenses for riders such as Ben Brown, 21, of Weston, Nova Scotia.

"Todd invited me to go to the Redbud ATV National (in Buchannan, Mich.), but I just couldn't afford it," says Brown, who was paralyzed from the chest down in a 2006 ATV accident. "He said he would make sure I would get there. Thanks to him I had my best racing experience."

For Macke, a married father of two children, success is not about winning; it's about trying.

"I knew I couldn't play sports as well as my classmates, but I still would play baseball, football, kickball, anything," he says. "Even now, I will run in a 5K race just to help others learn not to let someone define who they are, and to not let anyone or anything keep them from success."

Macke spreads his motivational message in presentations at schools, encouraging students to do their best and recognize the potential in everyone. In November, Macke spoke at Maroa (Ill.) High School, where he entertained students with stories of his own triumphs and struggles, and shared videos of his racing victories.

"Through his accomplishments, he has shown us that we can overcome our simple problems," says senior Kaitlyn Starbody, 17. "There really is nothing we can't do if we put our minds to it."

Whether he's racing, helping another ATV enthusiast or speaking to students, Macke is opening doors for the disabled and providing inspiration for everyone. "Life is what you make it," he says.

The Importance of Accessibility

2009-04-25T17:11:00.002+08:00

Saturday April 25, 2009

Karpal falls from wheelchair

KUANTAN: Karpal Singh fell from his wheelchair when he was about to attend a High Court hearing involving Pahang Me ntri Besar Datuk Seri Adnan Yaakob and logging company Seruan Gemilang Makmur Sdn Bhd here.

The Bukit Gelugor Member of Parliament, a lawyer for Seruan Gemilang, fell yesterday while several aides were trying to hoist his wheelchair up the stairs of the court complex.

As they made it to the first floor, they lost balance, resulting in Karpal’s fall.

“It’s time for us to have proper facilities for the disabled. Fortunately nothing happened to me. If not, there will be another by-election,” he told reporters after the court proceedings.

He added that this was the first time he had fallen from the wheelchair. His back hurt and he found it hard to move his hands initially.

None the worse: Concerned aides helping Karpal to get back on his wheelchair after a fall when they were carrying him up the stairs of the court complex in Kuantan yesterday. – Bernama

Karpal, 69, became wheelchair-bound after a road accident on the way home from the Bayan Lepas International Airport in Penang on Jan 29, 200 5.

The Last Lecture

2009-04-21T22:34:00.000+08:00

I have just finished reading a Chinese translated version of 'The Last Lecture' by Randy Pausch. I found the book inspiring, interesting, humourous and thought provoking. I have learned a few things about life from the book. Randy Pausch was a Computer Science Professor who delivered his last lecture entitled "Really Achieving Your Childhood Dreams" at Carnegie Mellon University. At the time of preparing the lecture Professor R. Pausch was battling terminal stage pancreatic cancer. With only a few months left in his life, he seriously considered whether to go ahead and prepare for his last lecture or spend more time with his family. The Professor was a workaholic thus he and his family knew he would spent most of the time with his computer if he were to accept the invitation. The decision was much more difficult to make because the lecture was scheduled on his wife's birthday and he would be out town on the eve of his wife birthday furthermore it might be the last they could celebrate together. Born with a dynamic personality the Professor chose the tougher way out- he went on to deliver and delicate the lecture to his three children.

"Really Achieving Your Childhood Dreams" wasn't about dying. It was about the importance of overcoming obstacles, of enabling the dreams of others, of seizing every moment (because “time is all you have...and you may find one day that you have less than you think”). It was a summation of everything Randy had come to believe. It was about living. It was about living it right in order to achieve your dreams.

Some of the though provoking lines from the book are:

“We cannot change the cards we are dealt, just how we play the hand.”

What wisdom would we impart to the world if we knew it was our last chance? If we had to vanish tomorrow, what would we want as our legacy?

Its not worth spending too much time on trivial things such as cleaning the underneath of a banister till it become shinny because nobody was going to notice it.

Even if you didn't achieve your goal in the end, you would have gained experience which was what matters most, because experience was one of the most valuable things you could share with somebody.

Dare to dream.

Terrified

2009-04-16T20:32:00.002+08:00

This morning, as I was reading the newspaper before going for hydrotherapy, I felt a queer sensation on the right of my head and face. Knowing that this was an indication that an epileptic seizure was about to take place, I immediately stopped what I was doing and remained very still and silent, surprisingly the funny feeling on my face was gone within a minute and nothing happened. Although no convulsion had taken place, when I tried to walk my right leg felt heavier already. What bothered me was, in previous seizures the tickling had started from the right foot, but this funny feeling on the right of my head and face....... Luckily I managed to work off the heaviness in my right leg during hydrotherapy.

What I had experienced was very similar to Todd's Paralysis. Todd's paralysis is a neurological condition experienced by individuals with epilepsy, in which a seizure is followed by a brief period of temporary paralysis. The paralysis may be partial or complete but usually occurs on just one side of the body. The only difference is that I am living with paralysis.

You can say I was being paranoid but a thousand and ten questions went through my mind during and after those few seconds. What if a full blown seizure happen again? What if my speech and vision were affected? What if a seizure occurred during my sleep? What if I found myself couldn't move my limbs? Would my efforts in physiotherapy be derailed ? and the scariest scenario was what if I lost my mind eventually? These thoughts had prompted me to bring forward some of the things which I have planned to do some time in the future because I want to do it while I still can.

Brain matters

2009-04-09T18:04:00.001+08:00

If the coverage in a local daily is anything to go by, the tragic death of actress Natasha Richardson had created the need to be more aware of the most important organ in a human body - The brain.

On 29 March 2009, The Starmag's 'Fit For Life' section had run an article 'A blow to the head', in that article Dr Y. L.M explained about “epidural haematoma” which was the cause of death of the actress.

What is “epidural haematoma”?

To understand what an epidural haematoma is, one must understand the anatomy of the brain. The brain is an extremely complicated organ, not least because it controls everything we do, even our breathing, eating and sleeping habits. Think of your brain as your command and control centre and your spinal cord and nerves as the communication relay.

The brain consists of three parts: forebrain, midbrain and hindbrain. The forebrain has the cerebral cortex, which is further divided into four pairs of lobes. The frontal lobe is the largest part, and is associated with your thinking, reasoning, planning, speech, movements, emotions and problem solving. The parietal lobe also commands your movements, perception and orientation.

The occipital lobe (back portion) helps you understand what you are seeing through your eyes and the temporal lobe has to do with perception, memory and understanding what you are hearing.

There are of course right and left lobes, and the corpus callosum connects these two hemispheres of your brain. It is said that women possess more axons (connecting nerve fibres) in their corpus callosum than men, hence they are able to integrate, process and multitask better and also talk faster!

The midbrain is made out of the tectum and tegmentum. The hindbrain, which will help us understand why Natasha Richardson had to be on life support, consists of the cerebellum, pons and medulla oblongata.

The midbrain, pons and medulla oblongata are also referred to as the brainstem. The brainstem is responsible for controlling vital life functions such as breathing, heartbeat and blood pressure.

Surrounding the brain are membranes called the meninges, which protect and cloak the brain in cerebrospinal fluid. There are three layers: the dura mater, the arachnoid mater and the pia mater.

So what does ‘epidural’ mean?

Epidural means outside the dura mater layer, which is the space between your skull and the dura mater. When blood begins to collect within this layer, this is called an “epidural haematoma”. The dura is laced with tiny veins that feed and drain the membranes and the brain, and when these are torn, they can bleed into the spaces between the layers.

Another potential space separates the dura mater from the arachnoid mater. (It is “potential” because most times, these two layers are pressing close to one another, like a thin transparent cloth laid tightly on top of the one beneath.) This is called the subdural space. And yes, a hematoma that collects within this potential space is called a “subdural haematoma”. The pia mater closely lines your brain and spinal cord.

Is it very common for people who have injured their heads to get an epidural haematoma?

It is not that common. Epidural haematomas occur in only 1 to 2% of all people with head injuries. But for people who slip into a coma after head injury, it has been found in 10 to 20% of them. If an epidural hematoma is allowed to progress untreated, as many as 50% of patients will die.

Epidural haematomas are most common in middle age. It becomes less common after you turn 40 because your dura becomes “stickier” to the bone of your skull and resists dissection. Men are affected four times more often than women, possibly because they are potentially more exposed to head injuries.

The most common part of the brain to get an epidural haematoma is the area between the temporal and parietal lobes.

If I hit my head, how will I know if I have an epidural haematoma? If Natasha Richardson had sought treatment earlier when she was still laughing and talking after the injury, could she have been saved?

The latter question is difficult to answer as we were not there and no CT scans were immediately taken of her head as to ascertain the nature of her injuries. But bleeding may always occur later and a heamatoma may only start to accumulate to a significant size after a period of time.

The unfortunate thing is that signs and symptoms of any haematoma occurring within the brain after a blow to the head can occur from immediately to as long as several weeks later! The symptoms are those of pressure on your brain structures – such as headache, nausea, vomiting, drowsiness, dizziness, confusion, slurred speech and weakness.

As more and more blood feeds into the haematoma, you may feel very lethargic, suffer fits or slip into unconsciousness. All these symptoms are caused by portions of your brain being affected. There are even patients who are struck in the head and become unconscious immediately, only to wake up later and feel better. Then they start to deteriorate as the haematoma accumulates.

Is there any treatment for an epidural hematoma?

Yes. This requires a neurosurgeon to evacuate the haematoma surgically, by drilling a hole through your skull. You have to do this before the hematoma exerts pressure onto the rest of your brain.

On 5 April 2009, 'Fit For Life' ran two brain-related. The first one was 'School of hard knocks'. In this article three specialists talked about traumatic brain injuries (tbi).

What is traumatic brain injury(TBI)?

TBI occurs as a result of extreme physical assaults on the head and brain, eg an impact strong enough to dislodge the brain within the skull or break the skull itself, or a violent shaking of the head that pulls nerve fibres and blood vessels inside the brain apart.

Such injuries can impair brain function in the short- and long-term, depending on their location and severity, as well as the age and general health of the injured person.

In the short-term, persons with mild TBI may experience a loss of consciousness, confusion, headaches, dizziness, a ringing in the ears, memory loss, fatigue, lethargy and trouble concentrating, ie a mild disruption of any given brain function.

Persons with moderate or severe TBI may experience worsening headaches, vomiting or nausea, slurred speech, a loss of coordination, weakness in the extremities, seizures, coma or death.

In the long-term, persons who have sustained TBI have been shown to stand a higher chance of experiencing permanent brain dysfunction (impaired cognition, sensory perception, and communication) and developing neurological diseases like epilepsy, Parkinsonism (symptoms of Parkinson’s disease, but not the disease itself), Alzheimer’s disease and dementia.

In general, injuries that cause a short loss of consciousness are called concussions. Impact to the head can also cause bruising of the brain, where blood vessels tear and bleed inside the skull. Such bruises are called contusions.

If bleeding continues unimpeded, blood can pool and clot in the spaces between the brain, the membranes that line it (the meninges), and the skull. This, is called haematoma. Intra-cerebral bleeds (bleeding inside the brain itself) can also occur if a very high force of impact is directed at the head.

Finally, like any bone, the skull can break, or fracture, if sufficient impact is sustained.

The three major management issues Dr Lim faces in cases of severe head injury are brain swelling (eg when a haematoma blocks the normal flow of cerebrospinal fluid); raised pressure in the skull (raised intracranial pressure); and oxygen starvation (hypoxic brain injury).

As the skull is a rigid enclosed structure, a swelling and bleeding brain will raise the pressure inside it. Unless this is relieved, the increased pressure will constrict the brain’s blood vessels and slow the flow of blood through them. Without an adequate supply of oxygen-bearing blood, the cells of the brain will die.

The second article entitled 'Headbanging: Stairway to Heaven ?' This article explained about the risk of headbanging antics of those people during certain concerts or other entertainment outlets. Researchers pointed out that headbanging might scramble our brains.

Of the various styles of headbanging identified (the “up-down”, “circular swing”, “full body” or “side-to-side”). The risk of head and neck injury for headbangers increases with an increase in song tempo and angle of movement of the head. The safe upper limits are 130 beats per minute and 75°. Upwards of these, you face increasing risk of mild head and neck injury.

Accessible Bathroom

2009-04-08T18:03:00.001+08:00

By No title Gary M Renick

No titleOne of the questions that I'm asked most often is "What must I do to make a bathroom accessible?" Well the first thing you must do is make sure that the disabled person can get into the bathroom, or any room for that matter. So let's start with the door. Ideally you want to use a 36" door. I understand that when remodeling, it is not always going to be possible to fit a door that size without some major tear out. However try to use a door no smaller than 30" if you can. Sometimes a pocket door is the answer. In new construction, it is always going to be 36" doors throughout the house. Next, in new construction we need to consider the size of the room. In bathrooms, other than the master, we sometimes lean toward smaller rather bigger when it comes to the second or third baths.

A 6'-0" x 8'-0" bathroom is going to be cramped, especially when there needs to be room for a wheelchair. You need to consider that a wheelchair requires at a minimum 48" to turn around and by standard it is 60". So if you consider this, then the minimum size bathroom becomes 8'-0" x 10'-0". In remodeling it may not always be possible to expand the bathroom in both width and depth. The most critical dimension is the width or area in front of the sink and toilet which must be 60", so in this cases we need 8'-0" perpendicular to these fixtures. Also with a wheelchair bound person counter top height is important.

So, as with the kitchen counters, use 32" maximum height counters and at the sink or anywhere else a person in a wheelchair must face a counter, in order to use the counter top area or sink, because knee space must be provided. For the toilet itself, keep in mind two things: height and shape. The fixture needs to be chair height and it should have an oval shaped bowl. Now, we come to the tub and shower area of the bathroom. In the master bath where you sometimes have both a shower and a bathtub both have to be considered. Let's start with the tub in the master bath where there is a separate shower. If the wheelchair user is planning to use the tub, then a device to raise and lower the individual will be required. Depending on the device to be used, some consideration may be needed during construction. As for the shower in the master bath, a roll-in shower will be needed along with a fold-down seat. These units take up no more room than a standard tub enclosure would. Grab bars will have to be installed around the tub and toilet areas as well as the shower area.

Additional reinforcement in these wall areas will need to be provided to support the grab bars. The grab bars for the toilet need to be installed both behind the tank and to the side opposite the counter or on both sides where the toilet is enclosed. The grab bars need to be installed at a height just above the tank. While we are on the subject of an enclosed toilet area, we need to be sure that the opening to the toilet area, or the door, is 36"and opens out of the enclosed area. You also need to allow space for 60" of turn around area. If this is not practical, then you might want to reconsider enclosing the toilet. The grab bars in a roll-in shower, as well as the fold down seat, are usually installed by the manufacturer. In the case of a custom shower enclosure, refer to the manufacturer's instructions on placement height for the grab bars. The seat, whether built-in or a fold-down, must be of chair height.

For bathrooms other than the large master, the tub will either need to be replaced with a roll-in shower, or you will want to make accommodations for raising and lowering the client. Whichever one you choose, the same rules regarding dimensions and fixtures apply here as with the master bath. Other things to consider here as well as elsewhere in the house are door handles, water valve levers in the sink and tub, temperature control in the shower and tub, and lighting. Door handles throughout the house should be a lever type, as these are easier for those with limited use of their hands to operate. The same is true of the levers on the sink and tub or shower controls for the same reason. Temperature control should be provided to prevent scalding for those individuals who lack, or have diminished, feeling or sensation. And lastly, you must consider the height and placement of switches and outlets.

Height must be in accordance with ADA specifications and you need to consider the ability of the individual to reach them when deciding the placement of outlets. Consider placing a GFI outlet, a Ground Fault Interrupter, on the front or side of the cabinet. Lighting is not something that you would normally consider important when designing for accessibility, but to a person in a wheelchair who can't reach the light switch, it is very important. Switches, as I mentioned before, must be at an easily reached height. We also must consider changing the bulbs in these fixtures. Consider using florescent bulbs or LED's for long life as the handicapped individual is going to require help in changing bulbs. And sometimes if we have to ask, too often we won't because we feel as if we are imposing on others, or we simply can't afford to have someone do it.

Wheelchair Exercise and Fitness for the Disabled

2009-04-06T17:42:00.000+08:00

Author : Helen Hecker

Sitting in a wheelchair for long periods of time can cause annoying restlessness and be quite uncomfortable for those persons who are disabled. It's important to keep the body moving and make exercise in your wheelchair a daily part of your fitness program, regardless of your disability.

Wheelchair exercise will help increase strength, flexibility, improve mobility, strengthen the heart and lungs and help control weight.

Before any exercise session, it's always a good idea to warm up, stretch and cool down for about ten minutes before and after workouts. Start slowly and work up to more weight and then to more challenging exercises. An upper body workout would include exercises for the arms, torso, neck, and shoulders.

Everyone, depending on the disability, has a unique situation, so consult with your doctor first to determine which exercises are better for you.

There are two basic types of wheelchair exercise that will be important to know for your workout -- resistance training and strength training.

The first type of wheelchair exercise is resistance training. It uses large, stretchy rubber bands called resistance bands. Wrap the bands securely around a door, pole, arm of your wheelchair, or other stable object. Now pull the bands towards you or away from you to work your muscles. You can use the bands to do arm and leg extensions, shoulder rotations and pull downs.

The second type of wheelchair exercise is strength training. This is done by lifting free weights or dumbbells. If you don't have free weights or dumbbells you can use cans of food. Look around, weigh them, if you can Start with 1-2 pound weights and work up slowly. Lift while you are watching TV if you like.

The benefits of strength training include the ability to perform daily activities, like pushing wheelchairs, carrying items and transferring. Many wheelchair users have an inefficient 'push' and strengthening the muscles involved will greatly help.

If resistance training or strength training is impossible for some reason or if you would like to supplement it, get a video or DVD that is especially for keeping fit and exercising while one is in a sitting position.

Remember to always keep a positive attitude. Use discipline to get into a regular exercise and fitness program you've created for yourself and continue to do it. Set goals and rewards for yourself. Don't do anything you know you shouldn't. Start slowly, keep your eyes on the end result. A good fitness and wheelchair exercise program, regardless of the disability, can significantly improve your health and increase mobility for you and others who are disabled.

Qing Ming

2009-04-05T16:23:00.000+08:00

Qing Ming as observe by the Chinese is a day for sweeping graves, praying for the dead and paying homage to ancestors. This morning we set off at 6.00 AM to Nirvana Memorial Park in Semenyih to pay respect to our late father. Upon reaching there we prayed at the Tua Peh Kong temple before proceeding to the burial site. The tomb was then beautified with flowers, colour papers and the food laid out.

Food stuff we have brought along included fruits, chicken, pork, Chinese tea, wine, vegetables, seafood and some of father's favourite delicacies. Once everything had been prepared, joss sticks were lit, prayers were then said and the burning of offerings such as paper money began. While waiting for the items to burn we sat around under the umbrellas provided and chit-chat. After everything was done, we had a 'picnic' in the park. The park looks like, well, a park more than a cemetary.

I wanna dance again !

2009-03-29T13:58:00.004+08:00

I used to love dancing. Dancing is a dynamic, vigor, vitality, radiant, energy and active sport, recreation or entertainment depends on how you wish to call it. For more than 10 years I have been thinking this ability was robbed off from me forever (8 years ago my Neurosurgeon told me so). But since one month ago, I have been thinking maybe the neurosurgeon could not imagine how conditions and events might have taken place over time and there and then I felt like dancing again. I dreamt about dancing, enjoying and having fun with friends to the sound of music. I watched disabled dancing videos on Youtube and tried to dance on the chair before moving on to a gym ball. I was so happy that I did not fall off either the chair or the gym ball, on the other hand I discovered that my body was rather stiff due to the lack of right-side body muscle control and practice. Anyway I believed in practice makes perfect and I intend to introduce dance moves into the daily physiotherapy routine.

Empowerment over Disability

2009-03-27T13:22:00.002+08:00

Positive Psychology News Daily

On a rainy September morning of 1989, Denny was going to work, driving along the Pennsylvania Turnpike when his car suddenly hydroplaned. Denny lost control of his vehicle and slid violently into a guardrail. “The guardrail literally pierced my car from side to side, coming in from the driver’s side all the way through the passenger-side door,” he remembers.

“I didn’t feel anything at first. There was smoke, glass and dust everywhere. Then I saw my left leg on the dashboard - it had been completely severed below the knee – and my right foot was on the passenger side, attached by just a few pieces of skin and an artery. That’s when I felt the most incredible rush of pain imaginable.”

Denny panicked, and then his survival instincts kicked in. “My wife was 7 months pregnant with our first son, so I couldn’t let myself go! Right then and there, I learned the power of visualization. I closed my eyes and imagined a group of caring and capable doctors taking control of the situation. Willing myself into as calm a state as possible seemed to decelerate my blood loss.”

Paramedics arrived, and Denny was rushed to the hospital by helicopter. Doctors did all they could to save his legs. The miracle of medicine worked for one of them. The other had to be amputated above the knee.

It took almost 4 months and 15 operations before doctors had completed their work on Denny’s legs. Their final verdict was that rehab was pointless – Denny would never walk again.

To which he immediately replied: “You wanna bet?”

No Excuses

The very next morning, Denny began lifting dumbbells from his hospital bed. He still could not move his lower body, but he trained all the muscles that cooperated. “I was told I could spend the rest of my life on welfare. I refused to accept the diagnosis and instead started my own rehab. I spent time imagining myself go to work, walk around the grocery store and do the little everyday tasks that require walking. I couldn’t get up on my legs, so I was crawling around the house alongside of my baby boy. He and I learned to walk together.”

Three years later, Denny was able to walk again. Today, he is an accomplished athlete. He graduated from climbing up the stairs to competing in 5 mile runs, half-marathons and even full marathons and triathlons.

Denny’s story is extraordinary, and particularly inspirational because he didn’t use any resources that are out of reach. What happened was a series of small miracles of everyday life, fueled by a large dose of determination and self-regulation.

Denny’s mantra was “No excuses, no limits.” In his words, “The most important disability isn’t physical. It’s the lack of accountability and discipline to take action that is most disabling.”

In this month where PPND asked its authors to discuss some of their favorite research findings, I wanted to share Denny’s story to highlight how self-regulation and exercise go a long way. I know that for many, self-regulation and exercise sound boring, even painful, but the effort required is minimal compared to the consequences of a lifestyle deprived of their benefits.

What a feeling.....

2009-03-26T16:53:00.000+08:00

From The New Zealand Herald

'Awesome' surf experience breaks disability barriers

For Auckland's Dan Buckingham, riding the surf was nearly impossible - until Saturday.

The 28-year-old, who a decade ago lost the use of his legs in a rugby accident, was one of about 20 disabled people who glided through the surf in front of Omanu Surf Life Saving Club.

"It was a real blast," said Mr Buckingham, the captain of the Wheel Blacks wheelchair rugby team.

"I definitely want to get out there again. It was so awesome having salt water in your face again. The feeling is really hard to put into words."

People aged 7 to 70 joined in the event, run by Tauranga-based Disabled Surfing New Zealand through Sport Bay of Plenty.

Each person was surrounded by at least six volunteers - about 80 turned out to help out on the day.

Organiser Pete Roberts said it was a thrill to see the smiles on people's faces as they glided across the waves. "I think the ocean is such a healer." He hopes it will become an annual event.

Invisible disability

2009-03-24T19:59:00.000+08:00

Psychiatric disabilities need accommodation in the workplace

Posted by Kelly Gaum, Cleveland

The Americans With Disabilities Act of 1997 provides protection from discrimination in the workplace for those with both physical and mental disabilities. Physical accommodations such as wheelchair ramps, automatic doors and large restroom stalls have become commonplace. But what about the less visible psychiatric disabilities? How well have they been accommodated?

Employers, like the public in general, have expressed more negative opinions of those with psychiatric and intellectual disabilities than those with physical disabilities (Hernandez & Keys, 2000). Myths of mental illness and violence continue to color our view of persons with psychiatric disorders. Persons with psychiatric disabilities are perceived by employers as less desirable than those with physical disabilities. They are also seen as more difficult to accommodate. This has some basis in reality, as employees' needs are often individual and require creative solutions. Accommodations are seldom as obvious as building a ramp.

Psychiatric disabilities often are invisible until and unless the employee chooses to disclose. This willingness (or unwillingness) to disclose a psychiatric disability affects employers' ability to accommodate. Concern about a negative response prevents employees from sharing their disabilities. Employees may also be uncertain as to what accommodations to request.

The Equal Employment Opportunity Commission has published the Enforcement Guidance on the Americans with Disabilities Act and Psychiatric Disabilities. This guide can be used by both employees and employers to generate creative solutions for accommodations. Included are ideas such as flexibility in shifts; brief, frequent breaks; noise reduction; and more frequent supervision. Employees may also benefit from Employee Assistance Programs.

Meaningful and appropriate accommodations will lead to increased productivity for persons with psychiatric disabilities. This in turn will strengthen the value of these workers in the eyes of employers and the community, dispelling the negative stereotypes of mental illness. Employees can avail themselves of their protections under the law. Employers must become versed in providing necessary accommodations.

Disability awareness

2009-03-23T16:08:00.000+08:00

Students able to experience disabilities

by Eric Peat

Eighth graders at North Side Middle School in Anderson learned what it’s like be disabled today.

Micah Dean, the orthopedic specialist for Anderson Community Schools, put on an event for students, which features a series of activities simulating disabilities. She organizes the annual event in conjunction with Indiana’s Disability Awareness Month of March.

Students were able to try wheelchairs and walkers, write with their off-hands, perform tasks with their eyes closed and talk with tootsie rolls in their mouths. Each activity was designed to show students what everyday tasks are like for disabled people.

Eighth grader Madison Cox said she understands the importance of the event.

“I don’t think it’s good for people to make fun of people with disabilities because they can’t help it,” Cox said. “It’s hard to know what they go through every day without actually experiencing it.”

The event also featured a guest speaker. Dean met a young woman named Tera Dyson at church while attending a service at the Eastside Church of God in Anderson. She invited Dyson to come speak to students about dealing with people with disabilities.

Dyson is well-qualified to speak about disabilities. She has suffered from cerebral palsy from birth. When she was as old as the students she spoke to today, she was insecure about her disability.

“Of course, I went through a time when I was in middle school and into high school that I wanted to be like everybody else,” Dyson said. “I wanted to be able to play basketball and be able to run track or go swimming.”

Dyson said was able to overcome this feeling by finding other activities she was good at, like academic super bowl. She also learned to concentrate on being the best she could be, Dyson said.

The event is the second of three trips to Anderson middle schools. The final event will take place at Eastside Middle School on April 10.

Nerves !

2009-03-22T21:47:00.002+08:00

Brain cells, neurons, electrical signals, chemical reaction, nerve messages, peripheral nervous system, motor neurons control voluntary movement.....blah...blah...etc..etc. Goodness me these are complicated !

Anyway, I have been attempting walking using the quad since Friday ! Abate timidly.

Benign brain tumour linked to epilepsy

2009-03-21T12:58:00.002+08:00

Advance scanning offers hope for surgical cure.

http://www.independent.co.uk/news/uk/benign-brain-tumour-linked-to-epilepsy-advanced-scanning-technique-offers-hope-of-surgical-cure-writes-liz-hunt-1426827.html

Respect differences

2009-03-19T16:00:00.000+08:00

By RUTH LIEW

Teach children to see beyond physical disability.

CHILDREN absorb their parents’ attitudes. They learn how to love and how to hate the differences in people from observing their parents. Sometimes children have a limited view of other people and their beliefs. Their parents try to “protect” them, fearing they may “catch” what others have.

Living in a diverse society, we should bring up our children to respect and value people who are different from us. We need to practise the good values we want our children to inherit.

Preschoolers have very little problem playing with physically challenged children. They do not really care what the less able-bodied cannot do. They are more interested in what they would like to do with them. They are eager to play with the physically disabled and enjoy their companionship.

Children are curious. They want to know why the other child is wearing a leg brace or not able to hear what they are saying. They will ask questions. Parents should help them understand that physical and mental abilities are only part of a person. There’s more to the person than what appears to be. It is important to remind children that all people have abilities. Children can focus on what their friends can do rather than what they cannot do.

It is up to parents to do the right thing by their children. Many adults can trace their own prejudices to their childhoods because their parents and care providers impressed upon them negative messages regarding people who looked different from them.

As psychoanalyst Carl Gustav Jung said: “If there is anything we wish to change in the child, we should first examine it and see whether it is not something that could be better changed in ourselves.”

Be honest with yourself and your children by examining your own prejudices and biases. If you are ignorant about people with physical or mental disabilities, find out more about them. Better still, take the opportunity to volunteer in communities where there is an integrated programme for people of all abilities.

According to The Anti-Defamation League’s Hate Hurts. How Children Learn and Unlearn Prejudice by Caryl Stern-LaRosa and Ellen Hofheimer Bettmann, parents must treat children’s questions with respect and seriousness.

Use age-appropriate language and offer correct facts about disabilities. Answer matter-of-factly without being too lengthy in your explanations.

For example, if your child asks about someone who is in a wheelchair without legs or arms, you can tell him that some people are born without limbs and others may have lost them in accidents or in sickness.

Reassure your child that people who have physical disabilities are capable of doing many things in life. Whenever it is possible, read books on stories about children who have disabilities and their success stories.

Do not cloud your child’s perception of people with disabilities with emotions such as pity and fear. Your child should be kind to people of all abilities and disabilities. Discuss with your child how he can play with his friend with a disability. Explore different ideas on doing activities that are best suited for everyone.

More importantly, use respectful language when referring to people from all backgrounds and abilities. No matter what race, creed, religion or disability, the person has a name and should be referred with respect. I remember a four-year-old Korean-American girl who had just met me in her day-care programme, calling out, “Hey, Chinese girl.” The assistant nursery teacher immediately reminded her that I have a name and she should use that instead of calling me “Chinese girl”.

If you are uncomfortable when children ask why some people are born with disabilities, or you are unable to reply, find someone who is confident to answer. You may make a mistake and say the wrong thing. Don’t cover it up. You should admit your mistakes and help the child learn that they can do the same when necessary.

Avoid using words like “us” and “them”. Instead of “We can do this but they cannot”, try saying “We can all do this together.” In your family conversations, offer more positive statements on people with diverse backgrounds and interests. This way when children start making statements of their own, they can find the right words to use.

We fear what we do not know. If children have positive experiences with diversity, they will be accepting and respectful towards people who are different from them. Parents must learn an important lesson together with their children that all people are unique and valuable.

Friendship

2009-03-14T15:40:00.002+08:00

I recently had a gathering with some old friends. It was always a thrill to get together with people who I shared so many important experiences. My friends and I have spent concentrated periods of formative time with each other. We went to the same primary, secondary, high school and university; we were team mates in sports, etc etc. Now, we only see each other once a year or so. Sometimes we people change, the foundation of our friendship becomes less relevant to one of us. I, for example, don't keep up as much with friends at my last work place ; Only recently I discovered that a close friend has left the company 3 or 4 years ago. Sometimes people find it very hard to keep some sense of connection going, and our friendship sadly has been fading. During the gathering, as we started to share about our lives I was struck by the same realization…my life is so incredibly different and it could take the shine off the excitement.

It was probably my fault that I have allowed many friendships to fade away. It was just too much to deal with then.…explaining the particular conditions and needs; explaining it to their spouses; explaining issues to anybody who wanted to know including their children and the fact that travel is a hassle in itself, trying to haul a wheelchair around and etc etc made it worse. In my mind, I was creating too much inconvenience for others. It was too much stress and I started to become distant and non-committal. Eventually we just become those people who simply exchange the annual greeting cards.

Nevertheless, I have learned that we never really know what challenges others are facing and I do think it is important for people to connect with each other. I would work hard to maintain my friendships and this is including friends I met through the miracles of the internet.

Disability spurs him on

2009-03-11T16:43:00.000+08:00

NST Online » Local News 2009/03/11

MALACCA: R. Kuganesh has never let the inability to use his right hand stand in the way of his dreams. Yesterday, the Malacca High School student scored three As and a B in STPM.

His accounts teacher, Azmi Sukmis, said Kuganesh was an exceptional student who prepared for his lessons a day before and asked questions if he had doubts.

Kuganesh said disability should not be a reason for anyone to fail.

"We have to be consistent and attentive in class, and focus more on the subjects that we are weak in.

"We should set a goal, affirm that we will succeed and learn to turn those affirmations into reality," said the lad who spent four hours a day revising.
Kuganesh scored an A for Accounts, Economics, and Business Studies and a B for General Paper.

His father, Raju Periasamy, an insurance agent, said Kuganesh was born with a disabled right hand.

"He would cocoon himself in the early days but after he attended a motivational talk, I saw changes. His school results got better.

"He scored 5As in the Sijil Pelajaran Malaysia exam."

Fourteen other students from Malacca High School also scored straight As. Top scorer Mah Shuk Ying moved from Kuala Pilah in Negri Sembilan just to study at the school.

She said the move paid off as she had "the best teachers" to guide her.