MS rare but leading cause of disability

MULTIPLE SCLEROSIS or in short, "MS", is a chronic inflammatory disease of the central nervous system. 

It affects those between the 20-40 age group and is more common among females.

And although it is rare in Malaysia - and Asia - it is one of the leading causes of disability in the young.

It affects the nervous system which gradually impacts the whole body.

There is currently no known cure for the disease because the exact cause of MS remains unknown in the world of science and medicine.

The good news, however, is that the condition is treatable.

Proper diagnosis and medication can effectively slow down MS' progression and ease its symptoms – resulting in a higher quality of life for those who have it.

The common symptoms are blurring of vision, double vision, numbness and weakness of hands and legs, speech difficulty, bowel and bladder symptoms, memory problem, unsteadiness in walking.
An individual could have an attack and the symptoms may resolve partially or completely over weeks or months.

These attacks or symptoms could occur again at a different time.
It is essential that one see a doctor early for diagnosis and treatment. Repeated attacks could result in repeated scar formation and hence resulting in disability.

Starting treatment early will ensure people with multiple sclerosis either remain free of disability or the need to be in a wheelchair is delayed.

KC, (not her real name), 29, has been living with multiple sclerosis since the age of 21. She had her first symptom on Merdeka Day nine years ago.

KC noticed that her right side of her entire body had suddenly gone numb and weak so much so she was unable to lift her hand.

She didn't know what had happened to her until various tests were conducted at the government hospital. Weeks later it was finally confirmed that she had MS.

Although the doctor who broke the news to her warned KC that her life was about to embark on a "completely different journey in life," she just shrugged it off as a horrible nightmare in a fairy tale book - thinking that she could get on with life as before and continue as normal with her studies.

However, the ugly and insidious disease began to wreak havoc within a few weeks.

KC had a number of relapses. Despite getting some of the best and latest medications in town from her doctors, the MS patient ended up in a wheelchair.

She also lost her sight in both her eyes. The situation required her to become dependent on others for everything. KC needed help in daily living chores such as to get in and out of her bed and to the bathroom, bathing, dressing up and more.

Fortunately, she had her parents to assist her. But now, they are getting old and find it increasingly hard to help her physically.
KC has no choice but to listen to the radio to pass her time. She occasionally gets to go out when her friends stop by and invite her to the mall for dinner.

Despite such a predicament, KC remains cheerful and optimistic that things will one day start looking positive for her again with the government's help.

When someone becomes handicapped either in a wheelchair or bedridden because of MS, it shuts down most of the opportunities for them, such as academic qualification, loss of income and an impaired quality of life.

Other social issues come into play which adds further burden to an individual and their caregivers.

However, with proper support and care, there is no need why persons with MS can't have a good quality of life.

What is needed for them is access to early and appropriate treatment to healthcare workers and hospitals.

Experts say management and treatment consists of an acute attack where steroids are given either in the hospital or daily as outpatient.
This helps reduce the severity of the illness or for early recovery. 

The rate of recovery can vary from individual to individual.
The long term treatment are aimed at reducing the frequency or number of attacks. This invariably reduces disability of needing a wheelchair or bedbound and ensures a patient is ambulant.

A healthcare official who has wide experience working with MS patients says the long-term treatment currently available in Malaysia are the Interferon group of drugs taken orally like "Natalizumab", "Fingolimod" and a few other immunosuppressant's used with the approval of the director general of health.

However, the cost of these treatments are between RM3500 to RM10,000 per month.

These medications are expensive for an average Malaysian to pay out of their pocket. Employers may not be able to cover these expenses too.

Insurance agencies may find it difficult to cover the medical bills long term which may result in treatment interruption.

Currently, most people with MS are obtaining their drugs from government hospitals.

However, in view of the cost, not all patients will have these drugs available to them.

The social welfare department has been aiding some patients in government hospitals. They may withhold support for these patients soon.

Activists who work in support for Malaysians with MS have urged the government and various agencies to support the MS cause by ensuring that all MS patients in the country are able to get full funding for all treatment related to MS.

An Uncaring Malaysia Day

I AM WRITING this, my first article on rakyattimes, a day after Malaysia Day.

As I do, I can't help but reflect back on my life being born as a disabled person in our beloved country almost 54-years ago.

That's, mind you, more than half a century of confronting challenges, innumerable adventures, as well as misadventures for a Malaysian living in our society with a disability.

A botched surgery at the age of 10 put me permanently in a wheelchair.

It wasn't until much later when I found out that the operation conducted by a paediatric orthopaedic specialist was really to make himself famous (if it was successful) instead of trying to cure my condition.

The hospital didn't want to see me anymore after the three-month experiment and neither did the primary school in which I was studying.

It was "way too expensive", they said, to make a wheelchair-friendly cubicle in the washroom of the school and restructuring my classes so that it could be held downstairs instead of upstairs wasn't worth the trouble. This, even though I had been top in my class for over three years when I was walking with a severe limp on my right foot.

I was pretty much banished in my home 24/7 after that. I had only my dog to keep me company when my able-bodied siblings were in school.

It was also strange that my parents themselves didn't think of educating me at the time. Perhaps the horrifying words from the doctors who told them that I wouldn't live long after birth must have been still haunting in their minds.

All these negative perceptions and reinforcements told me that I was not only a useless creature as long as I was in a wheelchair, but that I should definitely stay out of the way of the able-bodied for whom our society was designed for.

The only Merdeka events I heard or knew about were the annual parades I watched 'live' on TV.

And the only excitement that I got was to hear the roar of the jets fly over my house in Petaling Jaya after they were done with their performance in Kuala Lumpur.

My teenage years threw me into deep depression. I was not able to go out into the nearby local community park because of the lack of access for my wheelchair.

The Petaling Jaya City Council (MBPJ) became my biggest enemy.

I imagined every director who sat behind the desk to be a horrible monster. it was obvious that their jobs were to keep handicapped people out of every fun things in the city.

My depression eventually led me to develop life-threatening pressure sores on my body. These were caused by sitting for long periods in a wheelchair or sleeping on the bed.

In no time, I was back to the horrible hospital again where I was admitted and treated for over two years.

However, the good side of being hospitalised was that I was able to meet others whose conditions were far worse than mine. Quite a few of them were even in a terminal state.

It was about then when an extremely kind British couple who met me decided to sponsor me to Singapore for treatment. My pressure sores were gone within two weeks!

It was then that I decided to stop believing in all the lies that society told me about my disability. I tried virtually doing everything I possibly could which I previously thought was simply not possible for someone in a wheelchair.

I learnt to swim. That lead me to learn the piano afterwards.

I went on a three-month sponsored trip to United States where strangely enough, I was able to celebrate my true Merdeka at last.

The training given to me - conducted by people more handicapped that I was - sent me on a number of adventures I thought was utter madness.

I went water-skiing in my wheelchair on a speedboat. I also went white water  rafting down the McKenzie river in Oregon. These were special ability events conducted by Mobility International USA in Eugene to help build disabled people's confidence. 

However one of the biggest impacts in my life was to take the public bus daily from my home-stay families to the training centre. 

     

All I needed to do to was to wait until the steps of the bus magically turned into a lift to take my wheelchair on it. After the bus driver helps to securely strap me into my seat slot, I would be off to my various destinations.

I couldn't do such a thing in Malaysia!

This was all done through the push of several buttons. Even though this technology was made available in the late eighties, it has yet to be adopted by our Malaysian buses which are using inferior and unreliable methods currently. 

Things continued to improve significantly for me after my American trip. I am a writer now and was councillor for MBPJ for five years from 2008 - 2013.

As councillor, I managed to get not only that park's access way near my house properly fixed by the local authorities but others around PJ as well with special wheelchair access.

It's extremely important for all of us to realise that it isn't our personal disabilities that cripple us but the attitudes of society and the government - when our inalienable rights to our needs are ignored.

Only when we all make a conscious effort to change them, only then will Malaysians with disabilities be truly able to celebrate Malaysia Day.