Felled by insomnia

FACING UP TO THE TRUTH: Former minister of state Chan Soo Sen and his wife, Mrs Patricia Chan, in a photograph taken in June this year. Mrs Chan died on Oct 31 of cardiac arrest, which developed from severe brain degeneration caused by fatal familial insomnia.


    Nov 22, 2013

    Felled by insomnia

    Mind Your Body

    THE sleep disturbances began shortly after Mrs Patricia Chan's 57th birthday in April this year.

    Her husband, former minister of state Chan Soo Sen, recalled: "She would talk in her dreams, gesticulate, roll around and kick."

    As the weeks passed, the symptoms got worse.

    "She would suddenly fall asleep while talking or being driven in the car," said Mr Chan, who is also 57.

    But if she felt tired or drained, she did not show it. She kept up her routine and was active and cheerful.

    This was a day she had long prepared for, Mr Chan told Mind Your Body last week. Mr Chan retired from politics in 2011 and now works part-time as a business adviser.

    Eight years ago, Mrs Chan learnt she carried the gene for an extremely rare disease - fatal familial insomnia - which is said to affect about 100 people in some 40 families worldwide.

    Sufferers live with progressively worsening insomnia and brain function as the brain deteriorates.

    However, she continued to be active in church, meeting her friends and caring for church members who were sick.

    When she fell ill, Mr Chan said, there was one thing she feared - losing her memory.

    "In July, her short-term memory began to deteriorate progressively. She started to forget where she put her keys and her mobile phone."

    There is no cure or treatment for fatal familial insomnia, which typically strikes in middle age. Most people die within 18 months.

    By August, Mrs Chan had lost control of her fingers and her feet, and had to use a wheelchair. She became unstable and prone to falls.

    She was hospitalised in August, but the only option available to her was palliative care. As he had "no heart" to admit her to a hospice, he opted to have her at home, cared for by two full-time nurses.

    While her condition worsened, he set himself three objectives: to keep her safe, comfortable and happy.

    By September, Mrs Chan had started to mix up past and present. Towards the end, it became tough on everyone.

    "She began to lose bowel control. She started to wet the bed and defecate in bed. She also started to show difficulty in swallowing," he said.

    She would not sleep at all. Instead, she would hallucinate.

    On Oct 27, Mrs Chan suffered cardiac arrest. The hospital put her on life support, but declared her brain dead 72 hours later. Mr Chan consulted his sons and they decided to take her off the ventilator.

    Mr Chan said he, his wife and their sons were able to face the disease so calmly because they had faced up to the truth, difficult as it was.

    "The moment you ask 'why me' and wallow in self-pity and get angry with everybody, you are going to fail in your objectives and the outcome is still the same."