Coping with stroke hurtful, say survivors

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Bulusan (seated), her daughter, Carolyne (right) and her other family members, taking part in the Walk for Health in support of stroke awareness.

KOTA KINABALU: Having one’s mobility and speech affected by stroke, could well be the last thing anyone would imagine for themselves. But the fact remains that very few people realise that stroke could happen to anyone, anytime.

Hence, if there is anything that stroke survivors wished for people to realise, it’s that anyone is capable of being attacked by stroke.

Former accountant Bobb Lewis, 58, had a stroke six years ago. He had since been taken care of by his wife, Kayleen, with whom he has five children.

Kayleen feels that it is important for people to be aware of the possibilities of stroke and the damages it brings.

“Everything about our health was in check. But I guess, things happen. And so the best thing is just to realise that it could happen to anyone. We just want people to be aware, to look after themselves the best way they can,” said Kayleen.

For Kayleen and Bobb, the unfortunate event of Bobb’s stroke had the most impact on their communication.

“After almost 30 years of marriage, we have a hard time communicating. The normal things that we did became much more difficult and we had to figure out alternative ways to keep doing all the things that we liked in life,” said Kayleen.

She added that it had also become difficult for their children, one of whom is still in high school.

“I think for Bobb, it’s hard because he can no longer do the things he used to do, normally. It really affected our daughter’s life in a lot of ways, that her dad wasn’t the same person anymore,” lamented Kayleen.

Mrs Haris Luningning, 53, was a pharmacy lecturer before she had a full stroke on March 12, this year.

For her, the most painful part about losing most of her mobility, communication ability, and gradually losing her memory, was not being able to teach anymore.

“I cannot teach anymore,” she managed to say in between tears.

What hurts more, was the dim possibility of ever being able to carry her future grandchildren.

“I am first and foremost a mother, and someday I will be a grandmother. It hurts me to think that I will not be able to look after my children’s babies like I used to play with my children,” she said.

But this is also the very thing that drives Mrs Haris to keep doing her therapy, exercise, and to keep training.

“My therapists told me, that if I stop (training), I will go back to zero. I don’t want to go back to zero. I will keep going and keep working on gaining hopefully more of my mobility. If I can move even two of my fingers, to be able to play with my future grandchildren, I’d be happy,” she said.

Mrs Haris is positive that her determination would inspire other stroke survivors to work just as hard and to be just as optimistic.

“We have one life to live, and although it is not easy trying to keep my head together everyday, I realise I am still alive. I tell myself, I have to make the most out of it,” she said.

Fifty-seven-year-old Bulusan Enggihon @ Nanny, was at home looking after her toddler grandson when she had a full-blown stroke late last year, robbing her of her speech ability and mobility.

Her daughter, Carolyne Chau, expressed how difficult it became for their life routines.

“Suddenly everything became difficult, especially in the first few months of trying to cope with the damages that the stroke had done.

“We had to cope with our routines differently since then; how we do everyday things, how we cope with stress, my mother’s emotions,” she said.

Discovering the National Stroke Association of Malaysia (NASAM), became a turning point for Carolyne, her mother, and the whole family.

“We attend therapy sessions at the NASAM centre twice a week. At least now, instead of constantly feeling sorry for herself for being unable to do the things she used to do, she has something to look forward to,?said Carolyne.

She also hopes that more people are aware of NASAM to help those who may have had stroke, or family members and friends who had stroke, to seek support from a group such as NASAM.

Kayleen, Bob, Haris and his wife, Bulusan, Carolyne and some 100 others were participants of NASAM’s inaugural Walk for Health nationwide programme on Sunday.

Held at the Likas Jogging Trail here, Walk for Health was organised in conjunction with the World Stroke Day, which falls on October 29 annually.

Chairperson of NASAM Sabah chapter, Jasminah Ali Umar, disclosed that apart from raising funds for NASAM, Walk for Health is held to spread public awareness on stroke as well as on NASAM.

“It is also to expose stroke patients and survivors, or ‘strokees’ as what we call them, to other stroke patients, to make them see that they are not alone and that there is life after stroke.

“And in this event, we also get the public to come in and participate in the walk, where we also have other activities such as the Lucky Dip, so it becomes something fun for everyone as well as eye-opening to others about stroke and about NASAM,” said Jasminah.

Officiating the event was Assistant Minister of Community Development and Consumer Affairs Datuk Herbert Timbun Lagadan, who also stressed on the importance of stroke awareness.

“People need to realize that there are many our friends and families who had stroke were once healthy like the rest of us. This means that stroke does not choose its victim; it could happen to anyone,” said Herbert.

He added that the ministry would look into the possibility of allocating funds to assist NASAM Sabah on its need for bigger space for its centre, which he hoped the government would consider.

NASAM is a non-profit organisation dealing solely with stroke rehabilitation, located at Wisma Pandu Puteri, Jalan Tuaran.

It provides rehabilitation activities for up to 50 patients from Monday to Friday. Therapy sessions are conducted by qualified physiotherapists who are assisted by volunteers from all walks of life.

“In line with NASAM goal, our centre was set up not only for the benefit of many of Sabah stroke survivors, but also to help their families cope with trauma of the effects of stroke suffered by their loved ones,” said Jasminah.