KUALA LUMPUR: Imagine not being able to see clearly, feeling weak and unsteadiness in the limbs, and being tired all the time.
These symptoms seem vague, but they are also common symptoms of multiple sclerosis (MS).
“The thing about MS is that every patient has different symptoms. What one MS patient experiences, the other person might not, making it very unpredictable,” said Rekha Naidu, an MS patient.
“MS can affect your whole body. It can affect your eyes, where patients can see colours very differently. It can affect your hands, preventing you from writing as usual. It can affect your balance, so you can be falling a lot. It also can be very painful for the patient.
“But each individual experiences MS very differently, so you can’t compare,” she told The Star Online.
Rekha explained that diagnosis for MS is difficult because the symptoms may occur sporadically over a prolonged period of time, and it could also be attributed to a number of other medical conditions.
“I was diagnosed relatively early in 2002. I had problems with my right side and I found that I couldn’t walk in the park as usual, so I decided to see a doctor. The doctor did an MRI and the radiologist said that it might be MS, but they couldn’t be sure,” recalls Rekha.
“The toughest thing after being diagnosed is not being able to be the mother I used to be before,” she said.
“But I still continued to do all the things I used to do until the doctor said that I couldn’t drive anymore.”
Rekha explained her frustration about wanting to do something, but her body wasn’t able to do it.
“My family has been very supportive. And I’ve learnt to be more positive and to put more effort into my exercises,” said Rekha.
Although she uses a wheelchair to move around most of the time, Rekha said that she would practise walking around using her walking frame.
“My family would also help drop me off at places, and when they can’t, I’d take my usual taxi driver and they would help to dismantle my wheelchair and help me into the car,” said Rekha.
But she said it is a challenge for her to get around on public transportation when it starts raining. Another main pillar of strength for Rekha was the MS Society Malaysia.
“I didn’t know what MS was until the doctor told me when I was first diagnosed, so I did the research myself and read up on what it was,” she said. She discovered many MS societies around the world, and got in touch with the MS Society Malaysia.
"When I was first diagnosed, they would without fail call me to see how I was doing, and would come visit me. And they would not do that just for me, but with other MS patients as well, especially those who are newly diagnosed,” she said.
“It is easy to not do anything after being diagnosed, but they really helped me to become more positive,” said Rekha.
Although there is no cure for MS, there are treatments and therapies that patients can undergo to help them manage the disease and improve their ability to take part in their day-to-day activities.
“Exercise and regular activity are important. You have to go back to the basics. I would do my stretching exercises every morning and I will go for physiotherapy and occupational therapy every week,” said Rekha.
Occupational therapy focuses on skills that are important to continue the daily occupations of everyday life.
“Occupational therapy is to get everything back to working order and learn how to do basic things again like buttoning and cooking,” said Rekha, adding that physiotherapy targets the muscles and gets them working again.
“The most important thing is leading a healthy lifestyle, having a good diet, and exercise,” said Rekha.
Rekha believes that it is important to be aware of what MS is. The MS Society Malaysia and the Rotary Club of Bandar Sunway are organising an MS Awareness Walk on June 1 to be held in conjunction with the MS Awareness Month.
“Since we were formed in 2003, Malaysians are slowly becoming more aware about MS,” said Padma Panikker, secretary of MS Society Malaysia and a friend to Rekha.
“The awareness is increasing because MS has been highlighted in the newspapers and people have heard about it,” she said.
“The objective of this awareness walk is to promote an understanding of the scope of the disease and to assist those with MS in making educated decisions about their health,” said Padma.
“There will be lots of activities on the day, there will be Zumba dancing, talks given by psychologists, and even a clown will be there to entertain everyone! It’s going to be fun,” she said.
“There will be free t-shirts and goodie bags, too,” she added.
The MS Awareness Walk is open to everyone and will be held at Sunway University’s field on Sunday, June 1, from 7am to 9.45am.
Interested participants can log into www.rotarysunway.org for registration forms.