Weekly club a lifeline to survivors of stroke

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)