brain tumour survivor with nerves of steel

Meet the brain tumour survivor with nerves of steel

https://www.star2.com/people/2016/09/08/meet-brain-tumour-survivor-nerves-steel/

Rehabilitation may be a long and arduous journey but it is greatly beneficial to a newly-disabled person. Regardless of the cause of disability – it could be a spinal cord injury, a serious car accident, a freak accident, a brain tumour, brain aneurysm or a stroke – the consequences are often far-reaching.

A newly disabled person may suddenly find that he has lost control over his limbs, suffer bladder and bowel dysfunction or speech impairment and cognitive problems. Most are unprepared for this sudden change. Fear, frustration and despair can set in easily.

Besides the physiotherapist, occupational therapist, and speech therapist, rehabilitation also involves family members and friends. They all play a part in my well-being. Emotional support goes a long way in helping a patient to stay positive despite the setback.

In every case, rehabilitation helps to empower a person with disability and his family. It helps survivors to become as independent as possible and to attain the best possible quality of life. Even though rehabilitation does not cure or reverse any brain damage sustained prior to the disability, it can substantially help survivors to achieve the best possible long-term outcome. More notably, it helps us to maintain our strength, avert muscle wastage, and work towards the quality of life we wish for.

The most important thing I learned from rehabilitation was adapting to new ways of conducting daily activities – from getting out of bed to working on the buttons, wearing trousers, standing, sitting, working around minor obstacles, and using a wheelchair and crutches.

I was diagnosed with a meningioma brain tumour in 1998. A craniotomy was performed to remove the tumour. However, subsequent complications involving a relapse and stereotactic radio surgery and epilepsy, left me paralysed in 2001. Overwhelmed by grief and having to cope with limbs that didn’t seem to belong to me, I didn’t step out of the house for another five years.

Finally, in 2006, I registered as a person with disability and attended my first physiotherapy session.

Ten years on, I am still working with a physiotherapist, hoping to gain more independence. In my case, the road to rehabilitation is not a straightforward one.

Due to lack of information and knowledge about rehabilitation at that time, I started my physiotherapy sessions in the hospital’s general physiotherapy department before attending hydrotherapy sessions.

At that time, I alternated between physiotherapy and hydrotherapy. This went on for six years before a physiotherapist in the hydrotherapy department referred me to the neuro-rehabilitation department, and I started my neuro-rehab programme.

As I gained more control over my situation, it boosted my confidence and strengthened my resolve to continue with rehabilitation.

When my new physiotherapist advised me not to expect too much because of certain muscle weakness due to the long lapse before neuro-rehabilitation, I could only smile in response. I am a survivor.

There is no point dwelling on lost time; no harm trying after all.

The lesson I learnt is this: Getting into a correct rehabilitation programme is as important as getting an accurate diagnosis for an ailment.

Beyond Barriers is a platform for sharing and raising awareness on disability issues and any chronic medical condition. We welcome contributions from readers who have a disability or any special needs, caregivers, advocates of disability groups, or anyone living with any chronic medical condition. E-mail your stories to star2@thestar.com.my. Contributions which are published will be paid, so please include your full name, IC number, address and contact number.

https://www.star2.com/people/2016/09/08/meet-brain-tumour-survivor-nerves-steel/

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