Weekly club a lifeline to survivors of stroke
JAKARTA (JP): If experience is the best teacher, then Berry Tanukusuma is the most fitting person to lead the Indonesian Stroke Club at Cipto Mangunkusumo Hospital.
As club president, Berry has come a long way on his journey of regaining independence since his stroke in 1986. He was 46 years old then, and working at state oil company Pertamina.
"My biggest problem was I couldn't speak at all, and I had to go to a speech therapist, but I was also paralyzed on the left side of my body," he said.
Even after he completed therapy it was still difficult, but Berry got through by "singing popular songs at every opportunity" and reviving his amateur radio hobby.
"I could contact every member I wanted to meet and that made me use my speech."
He credits his singing with helping him get his speech back, and he continues to this day.
Dr. H. Suhardi, the secretary of the Indonesian Stroke Foundation, said a multidiscipline approach was needed to help patients live with their problems and to cope with their erratic emotions due to stroke.
To facilitate that need, the stroke club was started at several hospitals, where patients could gather to exercise, share experiences and motivate one another to find quicker independence.
"That's really important: The patients should not be in a dependent situation for a long time as that starts depression or other problems," Suhardi said.
The club is also open to family members of survivors.
There are 10 clubs at various hospitals around Jakarta boasting a combined membership of over 1,000 stroke patients, with neurologists, physiotherapists, speech therapists, dietitians and cardiologists on hand to help them, depending on their individual needs.
Psychiatrists and psychologists are also ready to give support to families as well as patients.
Dr. Hardhi Pranata, a neurologist at Gatot Soebroto Army Hospital, said a speech therapist, one who knows the patient's native tongue, is needed to improve their ability to communicate, as it motivates the patient to be independent.
Since paralysis is almost always involved, a physiotherapist will help a patient with controlling their movements, aiding them to learn how to get up, gain coordination and manage their activities of daily living again.
Suhardi said the club also provides information on how to prevent secondary attacks, as once a patient has had a stroke, they could easily have another one.
Hardhi added that survivors were six times more likely to have another stroke than someone who has not had one yet.
But patients need that family support, both emotionally and physically.
"We must educate the family on suitable emotional responses for the patients and their anger, and to help solve any problems because it's all very normal," Suhardi said.
At Cipto Mangunkusumo Hospital in Central Jakarta, about 30 to 40 active members of the 400 who are enrolled in the club meet weekly to exercise and spend time with each other.
For Syahrul, 71, the exercises and his friends were essential for him to regain his health since he joined six years ago.
"Gathering with my friends has been my good therapy -- not medicine!"
Depression is still a problem for Toerino, 74, who is the chief of the stroke club at the hospital, 12 years on.
"I always have to take things slowly," he said, adding that his wife, children and friends were the main source of his moral support.
Unfortunately, there is no suitable public transportation for handicapped participants to reach the hospital, and that is the main problem preventing a higher turnout for the sessions, one member, Liswar Saybi, 56, said.
Yet every Thursday morning, Liswar, Berry, Syahrul and Toerino manage to make their way to the hospital to faithfully take part in their exercises, but more importantly to enjoy a social outing together and provide support for one another.
Berry said he wanted people who have just had a stroke to know that it is important not to give up.
"It's OK to lose your health, but don't ever lose your spirit." (Maria Kegel)