Making The Effort

Making the extra effort

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Published: 25 January 2016

 

Nearly 200 persons – a large number of them People diagnosed with Parkinson's and their caregivers – filled up the hall of the Petaling Jaya City Council's (MBPJ) community library recently.
The purpose of this was to focus on their disease – and at the same time to learn new and latest tips on how best to stay on top of their conditions.
 

The four-hour event, held on the 16th of this month, was put together by the Kuala Lumpur-based Malaysian Parkinson's Disease Association or MPDA.

For the benefit of those who are not aware, Parkinson's is a movement disorder that affects mobility of the person as the condition progresses. 

 

The national NGO has been serving Malaysians with Parkinson's in the country for more than 20 years.
 

Here's why I think that this event was most extraordinary.
 

The room was filled with most of the right people.
 

Almost 80% of the 180 participants present at the MPDA session were persons with Parkinson's themselves.
 

If it was not them, it was their caregivers made up of husbands, wives, sons, daughters, relatives or a close friend who accompanied them there.
 

How often have we as disabled activists attended events organised for us and then much to our chagrin afterwards, find out the target group, that is, the handicapped not there?
 

So clearly credit must be duly given to the MPDA organisers for going all out to ensure that persons with Parkinson's and their loved ones turned up.
 

Wheelchairs and walking aids, as we know, are not the easiest things to carry around – not when we live in a society which had totally forgotten about the handicapped in our infrastructure.
But thank God that it did not stop the MPDA from doing their best to bring in as many persons with Parkinson's as they could.
 

Those that came were in various stages of the disease.
 

While most of them who were invited were able to walk, some others felt more comfortable to bring along their wheelchairs and walking canes. Because I myself use a wheelchair, I can appreciate how having a loved one around would have been a great relief for the latter.
 

This, in case we suddenly encountered a step in a building which our wheelchairs can't negotiate. 

 

Or what if we had a sudden attack of symptoms that required medication there and then?
 

Our close friend or loved one would know exactly what to do to help us.
 

I wish to point out that not all NGOs for the disabled bother to go through such details when things are organised for us. They just expect us to turn up without bothering about how we are to get there or checking if the bathrooms are disabled-friendly.
 

I have been told once or twice quite flat in the face to wear an adult diaper and "do your business in it if you have to."
 

Speaking of disabled-friendly restrooms, the MPDA scored top marks because it was available right next to the hall. MBPJ also deserves credit here for renovating their toilets to provide the facilities. 

 

Previously it had not been available.
 

The majority of people with Parkinson's were in their 60s and 70s while others in their fifties. The younger group were diagnosed with the condition as early as in their 40s.
 

Needless to say, the organisers didn't forget to invite the important "others" for the event. These include health professionals and members of the public who were interested in the topic.
 

Heads of other Parkinson's NGOs also turned up. They included one from Terengganu and also Sibu, Sarawak.
 

The main highlight was a talk on exercise and brain change.
It was presented by Dr Claire McLean, an international expert from an organisation called Parkinson Wellness Recovery, USA.
 

She left her audience totally captivated during her three-hour talk where she presented useful and much-needed tips for persons with Parkinson's on how exercise can be used as a treatment for motor, cognitive and emotional symptoms of Parkinson's disease.
 

Dr McLean illustrated how exercise can be used as a first line of defence against Parkinson's based on research evidence.
Many, if not most, persons with Parkinson's not only already know about the importance of exercise to their well-being but are already engaging in it.
 

However, now having personally listened to a top expert share new and supportive facts about its benefits will no doubt motivate them to work harder in their own exercise regimes and never give up.
During the second part of her talk, Dr McLean went further to illustrate specific exercises which persons with Parkinsons can and should perform in order to bring about necessary brain change.
Some of the exercises were so practical that they can do it while remaining seated or standing up.
 

A quick note of improvement here on wheelchair parking: Instead of the only one disabled parking available at MBPJ's community hall (which is nearer to the library than the actual hall, the council should add at least another one or two slots to cater for more handicapped people).
 

In conclusion, bravo again to MPDA for all the trouble and pain you took to ensure that your event was as comfortable and friendly to your members with Parkinson's disease and others.
I think that there is a lot that other NGOs can learn from your wonderful example. – January 25, 2016.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

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Mindset change on mental illness

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Published: 18 January 2016

 

One of my resolutions for the New Year is undoubtedly to read more books. And my problem with that has always been with ones written by professionals.
 

They often become too technical and boring – leaving you with the frustrating urge to reach for the dictionary in each sentence.
 

Recently, however, I came across a wonderful new book without any of that nonsense. It is written by Datuk Dr Andrew Mohanraj and will be launched next month.

Dr Mohanraj is an internationally and locally recognised psychiatrist. 

 

His book, called “Battling Adversity”, is a collection of 41 essays on mental health and society. 

 

It takes a fresh, interesting and timely approach into the conscious and subconscious psychological elements in many events happening around us today.
 

What I like most about the book is the author's ability to take readers through the difficult, and often uncomfortable and even scary subject of mental illness.
 

He dispels the false notion that mental illness only affects some people by making us realise the issue touches virtually every aspect of our everyday lives and needs to be dealt with rather than be ignored.
 

Mental problems and illness can affect every one of us at any time. And there are those who are already affected but don't know that they are.
 

Instead of the stereotyped images of persons in mental wards or someone acting bizarrely in the streets, Dr Mohanraj points out that mental health problems can start to take shape with the death of a close one, for instance, or when financial problems occur.
 

Work stress, divorce and even moving to a new place can also be other factors.
 

The modest book with 132 pages sets out on its mission in presenting a holistic understanding of mental illness.
 

The opening chapter focuses on the tantalising and elusive quest to look younger through age-defying treatments by unscrupulous cosmetic surgeries which are never ending.
 

Though they may provide comfort for patients, it is only temporary if a person's self esteem issue is not addressed.
 

Suicide and the reasons of its recent rise in the country is also discussed in the book. 

 

Other topics include paraphilia or bizarre sexual behaviour like paedophilia and exhibitionism created much interest early last year, the tragedy of MH370 and the psychological impact on the families of the victims to road bullies in our society.
 

Dr Mohanraj presents an interesting take on the latter – educating readers on something called, “Intermittent Explosive Disorder”.
Aviation mental health, women and drug addiction and school mental health are more topics readers will find interesting in the book.
 

My particular favourite was the issue of stigma and discrimination suffered by those with chronic mental illness. 

 

These are eloquently explored in the author's collection of essays – a subject which is obviously close to Dr Mohanraj as well from the way he wrote it.
 

An extraordinary feature to look out for in the book is the author's collection of notes as a post disaster psychiatrist for three years working in the tsunami stricken districts of Aceh, Indonesia where a 140-thousand lives were lost within a wink of an eye.
 

This is included in the second last chapter of the book called, “Diary of a Disaster Psychiatrist”.
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Dr Mohanraj tells of the harrowing true life stories of how a mother had to snatch her children and run for their lives to escape the killer waves and to how people lost their children forever to the sea waters.
 

On the whole, Battling Adversity is a delightful source of information which makes you think, rethink and revalue things about life.
 

It's a godsend for those who know little or nothing about mental illness. It also serves as a "reset button" for anyone – until now – whom have had wrong ideas about it.
 

The author gently and carefully takes the reader deeper and deeper into what mental illness is all about.
 

It's easy reading for the most part. There are helpful points to problems with some quick and simple solutions to take for those who find themselves caught up in some of the situations.
 

For those of us who are uncomfortable with the topic of mental illness, it's the perfect book to take away with you to do some private reading in order to educate ourselves before deciding on the next step to take, like consulting a professional in the field.
 

Battling Adversities is clearly not a book that offers solutions to psychological problems but rather an explanation of why things happen (with a psychological twist) around us.
 

The only problem I had with the book is that it is far too short and sorely deserves a sequel.
 

The book is published by Yayasan Tun Suffian. It is being sold in Peninsular Malaysia for RM20 and RM30 in Sabah and Sarawak.
For more information, email Pacifica Publications. – January 18, 2016.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

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The upside down world of multiple sclerosis

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Published: 11 January 2016

 

As a disabled activist, it isn't often that I come across people who are disabled who tell me they are not handicapped – especially when they really are.
 

A new person by the name of TW whom I befriended on the telephone the other day told me that I caught her by surprise when I referred to her as "a person with a disability".
 

My labelling of her, she said, at first startled her little. But then, it also provoked her to think deeper about her life and what she was going through.

Though it is true that she lives with a chronic illness called "multiple sclerosis" (MS), typically viewed as a disability, her personal view of herself is far from "disabled".  

 

MS is a neurodegenerative autoimmune disease. The type which TW has is the relapsing-remitting one, where there is a period of time when her illness is less severe.
 

Simply put, TW's immune system self-mutilates the insulation of her brain and spinal cord, denying her the best electric supply in all parts of her body.
 

There is currently no cure for MS which can affect any part of the body.
 

TW says even though she can understand why people regard her as  disabled, she still refuses to be considered as such.
 

During her teens, she started experiencing early symptoms like pins and needles, cramps, dizziness, ringing in her ears and others, but never took them seriously.
 

Even her general practitioner told her it was nothing for her to worry about.
 

One day though, she noticed that her eyes were not moving normally. Her vision suddenly had a wider range, like that of a frog.
The specialists she consulted were initially puzzled, until a MRI test hinted at MS.
 

But by then, TW's symptoms had disappeared and she laughed the whole episode off. 

 

A Google check furthermore said "Asians never got MS" and that it was purely "a Caucasian disease".
 

Life went on quite normally until TW said she had even forgotten what her neurologist looked like.
 

Three years later, however, she found herself staring at the ugly face of MS again – this time with absolute certainly.
TW had lost the sensation in her legs even though she had no trouble walking. She was just unable to feel the shoes on her feet or the jeans she was wearing.
 

Fortunately, the sensations came back after a treatment of steroids. She had to take half a day’s leave from work for three days until her symptoms disappeared.
 

Though TW's condition is on the milder end of the spectrum compared to others, MS is no walk in the park.
 

She still has episodes or flares which thankfully reverse in time with the help of steroids.
 

There are days though when she feels more symptoms – fatigue, short bursts of piercing pain, tingling in her arms and legs, loss of concentration and sometimes even the ability to say the right words during a conversation.
 

Then there are sweet days where she "forgets" that she has MS.
Keeping cool, drinking lots of water, maintaining a healthy diet and following a regular exercise regime make such good days more frequent, she says.
 

At present, TW doesn't see her MS as a "permanent disability" because the future is still unwritten for her.
 

Many others with MS have very different stories to tell.
They may face different symptoms. And many of them have been diagnosed with more aggressive and limiting symptoms which sometimes do not go away.
 

Some people start at the mild end and in time progress to more serious limitations. Some people just continue to have a mild disease for the rest of their life.
 

TW says there is one thing that all people with MS share, regardless of their disease's severity – the uncertainty of the future.
While life is innately uncertain for all humans, people with MS tend to be more in touch with this sense of uncertainty on a more regular basis.
 

There are stories of people who can tell when an episode is brewing inside them.
 

Then, there are also stories of people waking up to life-altering changes without any warning signs, and others who have had no further events after their diagnosis.
 

As one can imagine, living with MS is a life disruption. It forces life down a divergent route.
 

A lot of people with MS are suddenly forced down on their tracks, kicking and screaming.
 

But with time, coupled with good support and acceptance, the life diversion starts to look more like new opportunities.
 

Persons with MS often see life with a new set of eyes. Its uncertainty teaches them to be more grateful and appreciative of each day as it comes – to live in the moment.
 

It's all about resilience and a fighting spirit.
 

MS also sometimes becomes a calling.
 

For TW, she insists she is not disabled. She just happens to live with a chronic illness.
 

Like for so many others, TW says MS turned her world upside down when it first arrived.
 

Though she is "differently-abled" now, she is still able to accomplish great things in life in her own unique way with help from friends and support around her. – January 11, 2016.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

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Eye-opening Encounter with the Disabled

Eye-opening day out with disabled

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Published: 4 January 2016

 

Something happened during the holidays recently which surprised me.
 

And it turned out to be not only the perfect year-ender event to 2015, but it was also the best personal kick-start factor to get me started on a squeaky clean New Year in 2016.
 

A 19-year-old university student contacted me in early December for an interview project he wanted to do on disabled persons.

After spending more than two hours chatting with him – and noticing how enthusiastic he was with his assignment – I pointed out to him that they best way to understand disabled people is by going out with them and spending some time with them. 

 

Only then, I said, would you be better able to appreciate the real problems they faced in our society through our neglect for their needs and the public’s often negative perceptions about disabled people.
 

Three days later, he called me with some thrilling news. He decided to take up my challenge and go watch a movie with a wheelchair user.
 

However, finding someone in that condition among his circles wasn’t easy.
 

It wasn’t until his parents started asking around their friends when they came across another young man about the same age who was wheelchair-bound and spent most of his time at home.
 

A car accident a few years ago had made him permanently paralysed. 

 

It also robbed him of his confidence and career.
 

Although the hospital did its best in teaching him living skills when he was in the ward – it wasn’t the same when he got home.
He became a recluse and spent most of his time by the telly.
 

However, when the university student invited him for a movie, surprisingly he said, “Yes”.
 

The first challenge was to get his wheelchair into the student’s car. Unfortunately, the boot wasn’t large enough.
 

However, thankfully the wheelchair could be folded into a smaller size and be tucked away neatly in the backseat.
 

At the mall’s car park, the student made sure not to park in the disabled slot. 

 

This was because he was an able-bodied driver and didn’t want to take up the slots meant for handicapped drivers.
 

He dropped off his disabled guest in the waiting area and re-parked in a regular slot for the non-disabled.
 

When he came back, he noticed that other drivers were not as conscientious as he was. Some able-bodied drivers had grabbed the disabled slots without batting an eyelid.
 

At the ticket counter, there was no wheelchair logo sign to guide a disabled person or his helper where to go.
 

And non-disabled patrons who had formed long beelines and blocked the pathway seemed unhappy to allow a wheelchair to cross.
 

There was an awkward moment in the cinema when the university student went to get some drinks. While he had places to rest his popcorn and drink cup in the seat, there was none for the wheelchair-area seating.
 

After the movie, there was some time to catch some fast food before the adventurous duo returned home.
 

Needless to say, the sink area to wash your hands wasn’t accessible to wheelchairs. The mall’s disabled-friendly washroom was turned into a storeroom of mops and pails.
 

It took about 20 minutes before it was cleared for use.
 

The student told me that nothing was more eye-opening to him about disabilities than on the day he went on a trip with his new wheelchair friend.
 

He said that he had always thought that people with disabilities suffered because of their handicap. However, now he knows that they have a much harder time by the lack of facilities.
 

“It’s our attitudinal barriers towards persons with disabilities which we need to change most,” he said.
 

Last week, I met up with this bright student again. He just wanted to inform me that he and his friend are planning on going out again very soon.
 

“This time, it’s to the local swimming pool!” he said with a twinkle in the eye. – January 4, 2016.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

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