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Hope for persons with multiple sclerosis

 | June 11, 2014

Awareness programme on multiple sclerosis received overwhelming response from public

Anthony-SB-ThanasayanMultiple sclerosis or ‘MS’ in short, is thought to be an abnormal immune response of the body which attacks substances and tissues present in an individual who has the condition.

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

MS seems to occur more in women than men, usually between the ages of 20 and 50.

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.

This awareness was exactly what the Petaling Jaya based MS Society of Malaysia managed to achieve a fortnight ago when more than 400 persons turned up for their ‘MS Walk 2014’ at Sunway University in Bandar Sunway, Selangor.

The event was held in conjunction with World MS Day which fell on May 28, last month.

“The response was simply overwhelming and we couldn’t have done it without the strong support of the Rotary Club of Bandar Sunway and Sunway University,” said a beaming Padma Panikker to Life Lessons.

Padma is secretary of the 11-year old MS Society of Malaysia.

“From start to finish, the three-hour event provided for an action packed and most eye-opening morning for everyone to get to know more about MS and how it affects the lives of people who have to live with it,” added the 67-year old activist and businesswoman who was diagnosed with MS 39-years ago.

“There was already a long beeline of about a hundred participants looking all excited and waiting for the event to get started just before 7am when I got there,” Padma went on to explain.

“Some of the Rotarians and Sunway University volunteers who stayed up late into the night the previous day to put up the banners, wrap up the goodies bags and more, were eagerly adding some last minute touches before show time.”

“It was tremendously encouraging to see the lengths that these volunteers went to ensure that our members had a great time.”

walkParticipants mingled with each other

Padma pointed out that as everyone’s experience and symptoms with MS is different, there were persons with various types of disabilities in the event.

They came from all around the Klang Valley. One MS patient even came all the way from Johor. Distance was no excuse for her to miss out on such a rare treat.

Those who were unable to walk or had walking problems came in their wheelchairs and walking sticks with their helpers. The blind and those hard of hearing came with their families or carers.

However, their handicaps didn’t stop many of them from taking part in the one hour 3.5 kilometre walk that was flagged off at 8.15am. Those in wheelchairs were wheeled by their families, friends or volunteers.

Each of the participants were given orange coloured Tee-shirts which they wore during the walk, gaining curious looks from onlookers and the traffic nearby.

Some MS persons, however, who were not feeling up to mark that morning decided to stay back and mingle with others. Breakfast was provided free to everyone by the organisers.

Apart from the MS Walk which was the main highlight of the day, participants got to relish the other interesting events of the morning’s line-up.

The lively professional Zumba dancers on stage quickly got everyone – especially persons with MS – moving to the rhythm of some infectious Latin beats which all enjoyed.

They even conscientiously included some simple dance styles which made it easy for MS persons to follow.

“This served as a great icebreaker for the non-disabled and persons with MS.”

Padma pointed out that probably the most beneficial session of the event was during the times when participants got to mingle with each other.

“For some of our members, it was the very first time for them to be in the company of so many people and celebrating who they are. And for those meeting MS persons for the first time too, I hope it would have been an experience they will never forget.”

“Empathise but never feel sorry for us”

In her opening speech as one of the co-organising chairman of the event Padma quipped, “I see 800 of you today” and then went on to say MS has given her double vision as one of the symptoms she has had to struggle with for most of her life.

“(The best way forward for those who have MS) is to learn to accept (our condition) and (not stop) carrying on with our lives as normal as possible.

“This is where family support is very important. We know it’s (often) very tough on our caregivers as they too (may not and) do not fully understand (each and every part of) our difficulties.

“We don’t ask for sympathy, never feel sorry for us.

“Empathise with us instead. Your encouragement is very important to us in helping us carry on with our lives.

“Be a volunteer to spend some time and become a friend to a person with MS. If they are blind, read to them, go with them on an outing or offer to give caregivers a break by once in a while sitting in for them.

“Meanwhile, with this year’s theme being ‘Access’ for World MS Day, I wish all MS patients in Malaysia will be given subsidised medication from the government as currently only some get such a benefit.

“Medication costs can run between RM3,500 to RM10,000 a month. Often such medication must to be taken for life.

“To conclude, I would like to say I want to live in a world that will solve for others what I have struggled with for most of my life as I continue to hope that a cure for MS will finally be found soon.”

The MS Society is pleased to have two consultant neurologists as advisers who help them with their members as well as new members seeking treatment. They are MS specialists Dr Shanthi Viswanathan and Dr Joyce Joseph from Hospital Kuala Lumpur in Jalan Pahang.

 


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