Life After Stroke Lessons From Survivors

As stroke happens very suddenly, many people are taken by surprise. Families who have have made preparations for unplanned life incidents may find their lives severely impacted. Urban Health visits the National Stroke Association Malaysia (NASAM) centre at Petaling Jaya for an insight into the lives of three stroke patients:

 MUNIANDY PORTORAJO, 56

Former aircraft technician Muniandy used to be an active sports player and would help neighbouring commmunities with grass-cutting services on weekends. However, his life changed in 2005 when he got stroke at the age of 48 after undergoing an angiogram for his heart problem. He went into a coma because his brain was swollen and spent five months in hospital. 

“It happened so suddenly,” recalled his third son, Shaatesh Portorajo, who was 13 at that time. “When we saw him at the hospital, he couldn’t open his left eye, couldn’t talk and his mouth was slanted to one side. For the next five months, he had to be fed through a sunction tube at the neck.”

Muniandy’s wife, Jagatheswary Nookiah, 50, took the brunt of his stroke. For the next 8 years, she had to juggle the household responsibilities while caring for her bedridden husband and three school-going children. “I’m also a diabetic, so I worry about him if something happens to me,” she revealed.

The family has exhausted all their resources amounting to about RM50,000 for his treatment. Her only consolation now is that her three children have left school and are financially independent.

WHAT WE LEARNT:

1)      Never let you insurance lapse; you’ll never know when you need it.

2)      Have a joint or shared account with your spouse. Muniandy’s family were financially challenged for the first year when they could not access his bank accounts.

3)      Family must know your medical history. “We never knew my father was on blood thinning medications,” said Shaatesh.

4)      Have good friends who can help the family in times of trouble. “The airforce people were very supportive; they came to visit and help out in the early years. We will always be grateful for that,” said Jagatheswary.

 LEE KIN SHONG, 40

Formerly a fruit-seller, Lee, who was 37 then, was having a leisurely chat with his sister one night when she noticed Lee’s mouth had sloped all the way to his ear. Alarmed, she brought him to a clinic, where the doctor found his blood pressure at shocking levels of 190. Lee was given an injection to bring down his blood pressure and sent home to rest. 

The next morning, his sister was shocked to find him unconscious. Because of his size, Lee’s sister and her husband had to cart him to the car using a fruit trolley. Lee was sent to the Pantai Kuala Lumpur Hospital where he was in coma for two days . He stayed in the ICU for the next 40 days.

“Fortunately we had bought him medical card previously. The medical bills came up to about RM35,000,” said Mo Tan.

When he was finally discharged, he continued to be bedridden and couldn’ talk for the next 4 months. His biggest blow was when his wife, who had just completed her confinement for their third child then, packed up and left one night.

Bitter and angry, he refused to take his medications and often lashed at his sisters who lovingly took care of him. His behaviour changed only after they sent him to a Rehabilitation Home, where he cried and begged to go home. “He was behaving like a child – crying, playing with water during bathtime and refusing food. After many months, he finally improved and learnt to talk and walk using supports,” said Mo Tan.

Today, Lee has found a new job as a security guard at his residential area and continues to do physiotherapy in the hope of gaining full recovery. “I hope to learn how to drive again so that I can be independent,” he said.

WHAT WE LEARNT:

1)      Stroke can happen at any age, especially if you are overweight and lack exercise.

2)      Compliance to medication is important. “Lee never took his high blood pressure medications seriously,” says Mo Tan.

3)      Weight control is crucial. Dietary control must be a part of life.

4)      Control your temper and emotions. “It was bad enough taking care of Lee when he was bedridden. But when he loses his temper, it really affected us,” shares Mo Tan.

5)      Find something to live for. For Lee, it was his three young daughters. “I have to stay strong for their sake.

ALIMATON SADIAH BTE MAHMOOD, 62

Alimaton, a retired civil servant, had been diagnosed with high blood pressure five years ago and hence keeps herself physically active with weekend walks in the park and frequent use of the stairs. Hence,  she was taken by surprise when she found herself unable to stand up in the bathroom one fine morning in 2011.

She crawled to the door and called to her husband, Kamalluddin Bin Omar, 66, for help. “We took her to Putrajaya Hospital where she was diagnosed with a stroke,” he recalled. 

Now entirely dependent to her husband for all her needs, Alimaton  undergoes bouts of depression and tearfullness when she thinks of the active life she once led.

“She feels apologetic that she cannot fend for herself, but I’m alright about caring for her. Afterall, she raised our two children single-handedly when they were babies because I travelled a lot. Now it’s my turn to take care of her,” explained Kamalluddin. The couple has been married for 42 years.

WHAT WE LEARNT:

1)      Family support is important to keep the strokee’s spirits up.

2)      Befriend other stroke patients and their families; you will feel grateful when you see many others in worse conditions.

3)      Be prepared to make changes and sacrifices. Kamalluddin makes arrangements to reduce work travel and accompanies his wife to NASAM  every weekday for therapy.

4)      Stroke is not the end of everything. “I see her as my wife, not a stroke patient,” says Kamalluddin. “Our life has changed now, but not our love.”

 52,000 Malaysians suffer from stroke annually

110 deaths due to stroke every day

6 new cases of stroke occur every hour

3rd cause of death in Malaysia

15% of strokees die within a month of their stroke

The National Stroke Association of Malaysia (NASAM) promotes stroke provention through public awareness and strives to provide rehab services to enable stroke survivors to return to as normal a life as possible within the limits of their disabilities. NASAM has seven rehabilitation centres around Malaysia. Please visit www.nasam.org for contact details of the centre closest to you.

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