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Family, community support key in stroke recovery

I was 30 and working as an assistant head at the Economic Development Board when I had a stroke in 2011. One Sunday morning, as I was washing my motorcycle, I felt a sudden pressure in my head and collapsed in the car park. That was where the security guard on duty found me and immediately called for an ambulance.

Recent initiatives such as the launch of a new Wellness Centre by the Stroke Support Station (S3), are important in improving community access to therapy for stroke patients.

TODAY file photo

Recent initiatives such as the launch of a new Wellness Centre by the Stroke Support Station (S3), are important in improving community access to therapy for stroke patients.

TODAY file photo

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I was 30 and working as an assistant head at the Economic Development Board when I had a stroke in 2011. One Sunday morning, as I was washing my motorcycle, I felt a sudden pressure in my head and collapsed in the car park. That was where the security guard on duty found me and immediately called for an ambulance.

I had suffered a sudden haemorrhage in the brain from an arteriovenous malformation — an abnormal tangle of blood vessels — that had, until then, shown no symptoms. The bleeding occurred within the parietal lobe of the right hemisphere of my brain, severely affecting movement and sensation on the left and dominant side of my body.

In my journey through the medical establishment since, I have had many opportunities to talk to doctors, therapists and fellow stroke patients. But one particular conversation has stuck with me.

An occupational therapist from the wonderful team at Tan Tock Seng Hospital explained to me that in his professional experience, disability was seldom a purely physical phenomenon. Much depended on the patients’ own reactions to their new physical realities and their willingness to participate in rehabilitation and to devise coping strategies.

Looking back, my fellow patients who approached their rehabilitation journey with positive attitudes had one thing in common. They were optimistic about their future at the same time that they accepted their new physical disabilities.

Later on, I discovered that there is a psychological term for this sense of optimism tempered by realism. It is called the “Stockdale Paradox”, named after Admiral James Stockdale, who was the highest-ranking American soldier to be held prisoner during the Vietnam War.

He and his fellow prisoners of war who survived kept each other going, while maintaining a realistic assessment of their chances of rescue.

Faced with a challenge or trauma, the Stockdale Paradox defines those who are willing to accept the realities of their situations and yet are confident enough to believe that they will somehow prevail.

IMPORTANCE of FAMILY AND COMMUNITY SUPPORT

Although attitude and effort may make the greatest difference in how stroke patients approach rehabilitation, family and community support are vital in reinforcing this.

Trauma can be just as hard for family members and loved ones to come to terms with as it is for those directly affected. But mutual understanding and encouragement can keep everyone grounded and positive.

Family members need to be prepared to be flexible to help patients regain a sense of normalcy. Being able to regain some independence in daily routines early on can be a huge boost to self-esteem and encourages further effort.

While family members should provide help where needed, the line between being supportive and being patronising needs to be constantly negotiated.

One of the hardest things for both patients and their immediate relatives to cope with may be negative moods and emotions, which may be a direct cause of the brain injury itself as much as a normal psychological reaction to trauma.

For me, one of the most noticeable mood changes after my stroke was a quicker temper. In the years since, I have learnt to cope by detecting early signs of anger and quickly acting to calm myself down.

Even if both patients and their families are invested in the rehabilitation process, the larger social support and healthcare infrastructure must facilitate the journey.

A 2012 study by the National University of Singapore showed that adherence to post-discharge therapy in Singapore was dismal, at less than 40 per cent.

The direct cost of therapy aside, even those with access to subsidies often find the cost of transport prohibitive, especially specialised transport such as ambulances, which can cost many times the therapy itself.

Recent initiatives such as the launch of a new Wellness Centre by the Stroke Support Station (S3) this month by Minister for Health Gan Kim Yong are important in improving community access to therapy.

Mr Gan recognised the importance of such community-based efforts in helping stroke survivors “re-integrate into society and return to their normal activities as soon as possible”. However, in my opinion, still more can be done to address “last-mile” issues such as travel to and from therapy.

In the United Kingdom, where the National Health Service pays for both post-discharge rehabilitation as well as ambulance transport, therapy adherence rate is around 90 per cent, more than twice that in Singapore.

It is imperative that Singapore improves on its rehabilitation adherence rate as our population ages. Already, there are more than 10,000 new stroke patients every year, two-thirds of whom suffer moderate to severe physical disabilities.

Community support can help patients take advantage of the crucial one-year recovery window, and stop them from getting trapped in a self-reinforcing cycle of reduced mobility and exclusion from society.

In fact, faster social re-integration may help the country save on long-term healthcare costs by reducing associated chronic illnesses.

Dealing with trauma is never easy, but a positive attitude, encouragement from family and friends, and support from the wider community can greatly ease the road to recovery.

Five years after my stroke, I still cannot move my left hand much or walk without aid.

But if you ask me if I would trade what I have gained since then in terms of new friendships and life experiences for the ability to move normally again, I would be really hard pressed to give you an answer.

ABOUT THE AUTHOR:

Hawyee Auyong is the founder of the Rehabilitation Assistance to Cure Heal and Enable Lives (RACHEL) Fund administered by Tan Tock Seng Hospital Community Charity Fund that provides assistance to low-income families for stroke rehabilitation therapy. He is also a Research Associate at the Lee Kuan Yuan School of Public Policy.

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