Norzey was an assistant engineer for Sony Technology and six months pregnant with her fourth child when she had her first relapse. She had four more relapses before she was diagnosed and able to start treatment. Shortly after this she fell into a sleep that lasted for almost two months, after which she needed a year of rehab to learn to walk again. Here she and her husband talk about their experience.
‘Brace yourself. Just brace yourself, because this is a complex disease.’ These were the words of a doctor to Rizal when he suspected that the symptoms Norzey had been experiencing were MS and referred her to Kuala Lumpur Hospital. At this point the couple had a newborn baby, three young children and Rizal had recently set up his own business. They had no idea how the next few months would unfold and how ominous that ‘brace yourself’ had been.
Norzey’s first relapse came in 2012 during pregnancy and was followed quickly by two more. It was after the third relapse when she experienced optic neuritis, diplopia (double vision), severe headaches and poor balance that she was referred and treated with steroids While undergoing MRI scans and other tests a fourth relapse occurred. When the diagnosis finally came, a year after her first relapse, she began treatment with interferon-beta.
‘I felt sad, of course. Why was I diagnosed with this MS?’ says Norzey. ‘I just never knew that it was going to be that bad at the time’, adds Rizal. For the months following diagnosis the family tried to adapt to life with MS, but Norzey continued to be hampered by relapses. In September 2013 her seventh relapse occurred and had catastrophic results.
‘I noticed that she slept a lot, up to 20 hours. I asked Doctor Shanthi if it is normal for an MS patient to sleep this much and she suggested we bring her to hospital. We had her parents’ wedding anniversary to celebrate so we delayed a few days but then we took her in. The following day she went to sleep and didn’t wake up for almost two months,’ explains Rizal.
Norzey was in and out of ICU. She had lung failure and had to be intubated, she had a plasma transfusion, and she had a cyclophosphamide infusion, a treatment similar to chemotherapy. Even the doctors and nurses had never seen a case like this before. Throughout the two months Rizal was spending as much time as possible at the hospital, sleeping on benches and on the floor in corridors. He describes knowing the hospital like the back of his hand.
During this time their four children were being looked after by different family members and were all in different parts of the city. Rizal had to step back from his business and hand over control to his business partner. But the hardest thing to cope with was the reaction from some family members:
‘We have stigma in Malaysia, especially when you have something that the community doesn’t understand, and accusations of witchcraft came in. It was even said that I was the one responsible for putting her to sleep. I was struggling to explain it to other family members and it got to the point where we had to bring the shaman to the ICU just to avoid conflict.’
Norzey, of course, was completely unaware of what was happening:
‘I just slept the whole time, I did not know anything. I didn’t have any dreams, I didn’t even know I’d had my period, the nurses and my husband took care of everything. When I woke up I thought I had been sleeping for just one day.’
When she did wake up she couldn’t walk, talk or eat properly. She was in bed for a year and had to spend time at Cheras Rehabilitation Hospital for physiotherapy, occupational therapy and speech therapy. From the start of what they call ‘the big sleep’ to the end of her rehabilitation was two years and during that time she had to take medical retirement from Sony.
‘I loved my job! At first, I was a technician, then line leader and then a trainer. I had a lot of friends and it was a fun place to work.’
After her time asleep Norzey’s treatment was changed from interferon-beta to fingolimod. This treatment costs in the region of RM9,000 ($2,000) a month, an amount that would be completely unaffordable to Norzey and Rizal. Fortunately her medication is funded by the Kuala Lumpur Hospital’s Social Workers Fund. It will be ten years this September since Norzey’s sleep and the change to Fingolimod and she has had no further major relapses.
Norzey still experiences brain fog and problems with her speech occasionally, and she is weak on one side. She gets frustrated that she can only do light tasks around the house because her hands lack grip, but her mobility has improved so much she goes for walks and even for an occasional short jog. It’s a long way from where she once was.
Rizal has started another new business, an architectural design consultancy, and has also recently taken on the voluntary position as the President of the Malaysia MS Society. He wants to raise awareness of MS and help tackle stigma and also help to improve access to treatment:
‘In our case it sounds easy, but Norzey was lucky. Most patients have difficulty gaining access to treatment because the cost is very expensive and insurance doesn’t cover it. We would like to urge the government and policy makers to consider access to MS treatment, not just in Malaysia but around the world, because everywhere it’s the same story.’
With thanks to the MS Society of Malaysia for connecting us with Norzey.