Celebrating MS

Many of us may not have heard of a disease called multiple sclerosis or "MS".

Simply put, it is a disease in which the covering of the nerves in a person gradually becomes destroyed and damages an individual's speech, sight and ability to move.

This may sound pretty scary to many.

However, that didn't stop those who have the condition to come out of their homes and join nearly 600 people last week to celebrate World MS Day.

The international occasion is observed every year on the last Wednesday of May.

The local event called "MS Walk 2015" was held on the 24th of last month, about a week before the actual occasion, in Sunway University in Subang Jaya, Selangor. 

It was organised by the MS Society of Malaysia with the help of the Rotary Club of Bandar Sunway. Sunway University offered their venue free of charge to the MS charity's three-hour event. 

The enthusiasm and support for the MS cause was so strong that almost half of the crowd had turned up before sunrise to register for the activities.

Most of them were young people and university students. (They had also volunteered on the day before to set up the necessary items for the venue.) 

Members of the public started turning up shortly after.

Persons with MS, of course, were also there with their caregiver families and friends.

However, because MS is an invisible disability to some extent, it wasn't easy to spot them at once.

The Zumba, the well-known highly energetic Colombian dance fitness programme of the 1990s, was already in session as participants registered themselves.

After that, there was a quick talk on MS at 7am by a consultant neurologist. He introduced everyone to some vital details of what MS is – and some of the problems they are facing in our country.

Among them are the facts that many Malaysians still do not know what the disease is, and that they could be having it themselves and not realise it.

The special 5km walk around the area, with the police and ambulance on standby, was flagged off immediately after the talk.

The awareness-walk took about an hour to complete. The famished participants returned not only to a hearty breakfast, but also to entertainment and laughs by a clown as they reflected on the event's happenings.

"Awareness about MS – both for the person and their families who have to deal with the condition – and the public at large is critical and this is why we make it a point to organise events like this every year," explained Padma Panikker, secretary for the MS Society of Malaysia based in Petaling Jaya, Selangor, to me after the event. 

The 68-year old, who has had MS for 40 years, hailed the overwhelming turnout as a big success for the MS cause in Malaysian society. 

"What we, who live with MS, are looking for is empathy; not pity," she added and then went on to make the following observations about persons who have MS whom the public should be mindful of: 

– We may look perfectly normal but we get exhausted easily when walking or standing for too long. Please offer us a seat realising that we may have MS.

– Some of us may not walk in a straight line. Please don't stare or laugh at us when we do this in a room full of people.

– If I look normal, and park in a handicapped parking spot, please understand I desperately need it because of my problems with balancing myself and walking. If in doubt, please ask me politely if I have MS. It's the same situation when a MS person takes a bus and wants to sit in a "handicapped" or "pregnant woman"'s reserved seat.

– Don't get mad with people with MS if they have to cancel an appointment at the last minute or are unable to confirm an activity with you only until the eleventh hour. This is because we may be well on certain days and then be totally out on other days. We have no control over how our bodies choose to react from one day to another.

And here's what we all can do as volunteers for MS persons at home:

– Visit them at home and be their friend. We always appreciate a listening ear and love to hear what's happening in your world.

– Take them out for dinner or to one of your activities. You would be most surprised about how doing something like this can be a very enriching experience for you, too.

For information, please contact the MS Society of Malaysia at the following number: 03-7874 6601. – June 1, 2015.

* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.