Padma Panikker didn’t let MS stop her from living a full life

Originally published on Malaysiakini by Indra Sathiabalan. Published: Nov 26, 2023

Multiple sclerosis (MS) advocate Padma Panikker is one of the founders of the MS Society Malaysia and is seen as the voice of this disease that can strike anybody.

MS is a condition that happens when the immune system attacks the brain and spinal cord and Padma, now 77, has been living with it for nearly 50 years.

According to the World Health Organization, symptoms of MS vary from person to person and depend on the location and severity of nerve fibre damage.

“These often include vision problems, tiredness, trouble walking and keeping balance, and numbness or weakness in the arms and legs. Symptoms can come and go or last for a long time.”

There is not much known about the causes of MS and it is not hereditary. There is presently no cure for MS although there are treatments and medication to help reduce symptoms and prevent further relapses.

Several celebrities suffer from MS, including actresses Christina Applegate and Selma Blair.

MS is commonly diagnosed in people when they are in their 20s to 40s. It is two to three times more common in women than men.

Nonetheless, you can live a full life as evidenced by Padma who helped run a successful business with her late husband, had three children, and is now a doting grandmother.

During an interview with Malaysiakini at her home in Petaling Jaya, Selangor, Padma said she was diagnosed in 1974 when she was 28.

It began with one of the common symptoms associated with MS, neuromyelitis optica. She woke up one morning and could not see from one eye. That soon escalated.

“I couldn’t walk. I had severe pain in the back and my head. I was put in a ward in Kuala Lumpur General Hospital for a month,” she recalled.

Because she had young children, she was sent home for home leave on the weekends. She had been suffering for two years by then.

“I came home and the pain was unbearable,” she added.

However, on one of the Mondays that she returned to the hospital, her regular neurologist was on leave and a neurosurgeon came to check on her. He said they had to do an angiogram on her.

She was shocked when he returned to see her that evening.

“So he said, do you want the good news or the bad news? I had reached a stage where it didn’t matter to me,” recalled Padma.

Accused of seeking attention

Like many who suffer from MS, Padma had to put up with people who thought she was merely seeking attention. “When people can’t see what is wrong with you, they assume you are okay,” she reflects.

The neurosurgeon, on the other hand, told her he initially thought the pain was due to tumours but ruled that out after tests.

Having just returned from the US, he had seen patients who suffered from MS. Though it was rare in Malaysia at the time, he correctly diagnosed that was what Padma was suffering from.

She was only too happy to hear there was a name to her condition. The doctor put her on a special hormone therapy - there were no steroids back then.

He also warned her she would recover slowly but she might also relapse. Padma admits she was so happy she did not hear the relapse part.

“You won’t believe it, every three months to four months, I was back again in the hospital after some relapse. Each time we relapse, we lose something,” she said.

Over the years, Padma suffered from bowel problems and numbness on the right side of her body.

She also suffers from vision problems and when she looks at a person, she sees an additional outline of that person akin to double vision. She also has difficulty using her right hand properly and had to train herself to use her left hand to pick up things.

Pins and needles as well as cramps are part of life. Just like developing an allergy to prescribed medication.

Shocking reaction to drugs

When she was trying the first drug for MS that was available here she developed a black, blister-like rash that felt like pinpricks.

“It was a new drug at that time. I called the pharmaceutical company and their representative came to the office. She said, ‘I better straight away take you to a hospital’,” Padma said.

She was admitted straight away. While she was forthcoming about the spots in her mouth, on her foot, and other parts of her body, she was too shy to disclose that they were also in her vagina.

Her eyes were also extremely dry and her lungs felt like they were burning.

She was isolated from other patients and the next day, another specialist came to visit and asked her bluntly if the spots were in her vagina.

When she reluctantly admitted there was, he raised his voice and asked if she was trying to kill herself.

The doctor later discovered she was one of the seven people in the world to have this reaction to the drug and what she had was called the Stevens-Johnson syndrome.

Support for MS patients

Despite all of Padma’s medical problems, it was her young children who kept her going. Her husband, a government servant, became the sole breadwinner in the family.

Her family became a huge support to her as she went through her journey living with MS and learnt how to adjust her diet when she started having food allergies.

This was despite taking medicine prescribed to suppress her immune system.

Receiving more familial support, her brothers, who lived in the UK, advised her to join a support group for people living with MS. Padma also suggested to a doctor that it would be nice to be in contact with more people who had MS.

That was when the idea to set up her own support group was born. During that time, she did a lot of voluntary work such as meeting and talking to other patients.

MS Society Malaysia was established in collaboration with University Hospital, Hospital Universiti Kebangsaan Malaysia, and Hospital Kuala Lumpur in 2003.

They aim to provide patients with a support network, increase public awareness, encourage earlier diagnosis and treatment, and seek government assistance in approving medications for MS patients.

According to their website, it is estimated that 2.5 million individuals worldwide suffer from MS and there are about 1,000 in Malaysia. The society also joins efforts to advocate for MS research as part of a collective worldwide effort to solve MS.

Padma was the first president and held the position intermittently until 2023. She took time off in between to take care of her ailing husband.

“I used to get some of the patients at home. Sit and talk, and have tea. So, they also felt there was somebody to talk to. That’s how it started.”

Despite inroads made into this disease, Padma noted not many people want to talk about it.

“In my first talk when the society was formed, I said the illness doesn’t choose. Whether you’re rich, poor, the colour, creed, nothing. Anybody can get it. So, be together, and help each other. I used to call it the endless family,” she said.

The annual MS Walk - they took a break during the Covid-19 pandemic - was one of the ways they helped spread the message and come together. She is grateful for the help of the Rotary Club of Bandar Sunway and the Rotaract Club of Sunway University which helped organise this event.

“It’s like, almost like an uphill battle, you know. I wanted help for the patients. And I was not shy to say, I am an MS patient. What is there to be shy about?

“So, slowly, I think, even the patients started realising, there’s no harm in talking about it,” said Padma who also advises those with MS to ignore those who judge them and concentrate on taking care of themselves and their families.

She is living proof that life can be lived, against the odds.