My reason for preventing stroke? Seeing how stroke turned my father and our family’s life upside down

Dolan Das shares her family experience of stroke and how that has led her to raise awareness of stroke and stroke risk in India

Before the stroke did you have any idea that your father was at risk of stroke?

Partly. Because we did know that my father was suffering from high blood pressure.

When and how did you realise that your father was having a stroke?

On that very day, my father felt weakness in his left arm and with passing time he was having difficulty talking. Later,when he was consulted with a local physician he suggested a CT scan and it revealed that my father had suffered an ischaemic stroke.

Can you tell us a little about life before you father's stroke?

My father was the single earning member of our family. My mother was a house wife and me and my brother was busy with our studies then. When my father had his first stroke it was not so very severe. We consulted a stroke expert after getting the CT scan report and my father was under his treatment. As he was recovering from the first attack of stroke, however, he suffered from a recurrent stroke. This was 5 months after the first one and this time it was a severe one. He lost his cognitive power and his left side was paralysed. He was then admitted to a government hospital under the care of a stroke expert. At first acute treatment was given and then rehabilitation started. He was released from the hospital after 3 weeks. But now my father’s whole life as well as that of all of our family members was changed. My father was very active and busy with his office. My mother handled all the household work. But now my father had to depend on someone for his daily life and my mother had to play the role of caregiver while simultaneously taking care of the household. Life became hectic for us all, both economically and physically.

How has life changed since your father’s stroke?

Our life was changed after my father suffered from stroke. As he was the sole earning member and worked in private sector, we had to think about the financial part of our family. Moreover, my mother’s health became an issue with the increasing pressures on her and her workload got increased. She had to manage the household works and my father’s care also. Me and my brother tried to help her but we also had our own studies at that time.

What steps do you take now to prevent stroke? How are you working to reduce your specific risks?

We have become more aware about the risk factors and burden of stroke. I personally have become associated with the Stroke Foundation of Bengal and take part in their different programmes to make people aware about stroke. I personally tell my friends, relatives and neighbours about the risks of stroke and make them aware about the signs and symptoms so that they can easily identify stroke and take proper care of the individual who suffers from stroke.

What would you say to other people to make them take stroke prevention seriously?

Be aware about the sign and symptoms of stroke. I would tell them about FAST:Face drooping; Arm weakness in any one side or both; Speech problem in talking or understanding; and Time is brain, not to waste time and immediately take the patient to nearby hospital or stroke care centres.

What is your reason for preventing strokes?

I know personally how stroke changes one’s life, so I try to make people aware of the risk factors, especially high blood pressure, the single most important cause of stroke. By knowing your risks, following the precautions and modifying life style one can easily prevent stroke.

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My reason for preventing stroke? Watching my entire family carry the burden of my stroke

Mike Shapland is 56 years old and has experienced stroke twice here he shares his experience and why we should all think about our stroke risk and do more to prevent stroke.

Before the stroke did you have any idea that you were at any risk of stroke?

Well I had a stroke about 10 years prior to the recent one so although I personally didn’t think it would happen again – I think my wife was worried about my “lifestyle”. I found out recently that my Grandmother on my paternal side died from a stroke and that my Grandfather from my maternal side died of a stroke. I am aware that Strokes are not hereditary.

When and how did you realise that you were having a stroke?

I was at work – it was just after mid-day and one of my staff members asked what was wrong with my face – I also had a headache and “pin-pricks” of light spots flashing in my vision.

Can you tell us a little about your life before stroke?

I had been fairly successful in business being a Director of a listed Company. I regularly paid golf and was an active river fisherman. I was fairly social and mixed easily with people. I was seldom sick. I enjoyed alone time with various hobbies and interests. My family members being a wife Bev, and two daughters Kirsty and Caity, were in my mind a happy “team” who shared easily and openly with each other. They were very protective over each other and slotted easily into society at large. I was probably the most closed emotionally of the family.

How has life changed for you and the people around you since your stroke?

Dramatically – I was stopped from driving, I was boarded (stopped from working), I spent over a year doing rehabilitation and getting psychological help. My co-ordination was lost so I couldn’t play golf, walk easily, fishing was a struggle. Money became very tight, I went through a long stage of depression, my wife Bev was put under enormous strain keeping family and her work commitments alive. I became a loner, I couldn’t deal with noise, Malls, family get togethers, restaurants etc. I lost my pride and confidence and was terribly embarrassed that I’d had a stroke. My vision deteriorated and I live with headaches from what we assume is high blood pressure. I have managed to find part time work – but it is not meaningful.

What steps do you take now to prevent stroke?

I try to avoid stressful situations – my family better understand my people phobia so they do not put pressure on me to go out. I am on blood pressure medication and I have taken up a few hobbies. I do not smoke, but I am still overweight. I need to address that. I have read up quite a bit about strokes, so I am more aware of them, how easily they occur and that I am not alone.

What would you say to other people to make them take stroke prevention seriously?

I would tell them that I was normal once – just like them…and within a few hours, life would never be the same. I often tell them that excess stress is not worth the lifelong sentence of being a stroke survivor. I believe our lifestyle, our values of what we need and what we want are blurred and that chasing what we need, can end in disaster – I would also tell them that I am just one of the stroke survivors in my family, because my entire family have had to carry my burden – and the guilt of that is heavy.

What is your reason for preventing strokes?

There is very little knowledge out there of what a stroke is, how it affects you, how it affects your family and how common it is. This could be changed.

Promoting SSOs in China

Sarah Belson, WSO International Development Manager, has just spent a week in China.

When I was first approached by Liying Xing, a neurology clinical research nurse at University College Hospital London, to participate in the Tiantan Stroke Conference in Beijing, my initial response was that I wasn't sure I was the person she was looking for. 'Yes you are' she said, 'we want someone to talk about stroke support in the community'. This was certainly a good start. I can’t say whether my 20 minute session introducing the WSO, its priority to support SSOs, and examples of SSO work around the world, had an immediate impact on my audience. This might have been because I was a bit of an anomaly in the session on Risk factors intervention and neuroprotection for cerebrovascular diseases. But the topic of SSOs was on the programme at least.

On the first evening of the Conference, the Chinese Stroke Association organised a celebration and award giving event for 300 of its 27,000 registered volunteers. These volunteers include doctors and nurses and are known as the Red Bracelet Movement, the stroke support arm of the Chinese Stroke Association. The movement is championed by Professor Wang Shaoshi and he attended the event along with the leadership of the Chinese Stroke Association. It was inspiring to see so many volunteers from across this vast country, committed to raising awareness about stroke - the risks, the signs and the emergency response. There is huge potential for some of these volunteers to develop SSOs and build on the stroke awareness work. This is certainly something that Professor Shaoshi recognises and wants to explore further.

And then on to Chongqing, a city that has grown from a population of 7 million to 37 million in the past two decades. We visited the Fourth People's Hospital of Chongqing and the attached Emergency Medical Centre. The hospital is not lacking in the latest modern equipment and some of the patients we met on the neurology ward couldn't be more enthusiastic about the care they had received. 'I'm a mathematician' one said, 'I only talk facts; they really took care of me'. One of the neurosurgeons said that 40% of the patients he sees have had a stroke. We met with staff from across the department and there was real consensus that support to stroke survivors in the community is lacking. Straight away we could see the opportunity to integrate stroke support work into the neurology department’s community medical association initiative, through which they share knowledge and good practice with community medical centres. So, what next? There is now a plan to set up an SSO in Chongqing and there is certainly a number of people who are in a position to make this happen.

In other meetings we met with the vice secretary of the Foreign and Chinese Affairs Office, and at the Health Commission we met with representatives of a number of other hospitals across Chongqing. There is great enthusiasm for learning more about what SSOs are, how they contribute to prevention awareness and how they can respond to the gap in rehabilitation and recovery support in China. In addition, many people we met are keen to join the WSO in order to access its resources and opportunities. The priority now is to build on this enthusiasm and these connections, in a country where stroke is the leading cause of death and where there are 7.7 million stroke survivors, who all have a right to be supported in their recovery. 

Stroke survivor stories - Ron Smith

Where were you when you had your stroke?  

The initial mini strokes happened at my home in Nanoose Bay, British Columbia. I had my stroke on November 19, 2012, a day, as a stroke survivor, you never forget and your family never forgets. So many people are affected

Could you access hospital?

I had what the emergency doctor referred to as a stuttering stroke. I think what he meant by this is that I had a series of smaller strokes at home before the bigger stroke hit. After the major event, which happened in the waiting room of emergency or I wouldn't be here today, I wasn’t having thoughts that registered. I inhabited a place I can only describe as ‘limbo’.

What expectations did you have for your treatment, rehabilitation, therapy and recovery?

I was in denial from the onset, an all too common response to the symptoms of stroke. My right side was paralyzed. This was frightening. Initially my speech was impaired but this righted itself fairly quickly. With a little effort, people could understand me after a few days. Perhaps the biggest problem was that I didn’t feel like I belonged to the world anymore even though I felt my cognitive powers were still intact. The combination of loss of physical and emotional control and the sense of no longer belonging to the everyday world resulted in severe depression. After a couple of weeks I decided I could either wallow in self-pity or take action. In combination with physical therapy I decided to meditate. I also decided, very deliberately, that I needed to take a positive and proactive approach to my recovery. I have never stopped therapy. I have read as much as possible by other stroke survivors and a number of books on the brain, brain plasticity and new forms of therapy. I also used memory to find my way back to myself, to the person I had been. Patience is vital to the stroke survivor’s well-being because recovery can be very slow.

What was your experience of treatment and/or rehabilitation and therapy?

I have two complaints: My formal therapy was terminated far too early; and all forms of therapy need to be tailored to the individual; that is, personalized. The patient needs to be consulted if therapy is to be effective. Too many assumptions are made about what will work. Anecdotal accounts can be every bit as reliable and as useful as clinical research if collected properly.

What has helped you in your recovery?

Before my stroke I taught English and Creative Writing at the university level; I owned a publishing company; and I wrote and published books. I was lucky, writing was my life and was a vocation to which I could return with relative ease. Eight months after my stroke I decided to write about my stroke experience. My only handicap was that I had lost the use of my right arm and hand. I typed my book, The Defiant Mind: Living Inside a Stroke, over 300 pages, with the index finger on my left hand. The Defiant Mind is a book about the wonder that is the human brain, both before it has been damaged and after. I hoped the book would be useful to other stroke survivors, care-givers and therapists. I also hoped it would help the general public understand what a stroke is, at least from my perspective. But if my book doesn’t achieve these goals at least it will have been another form of therapy for me; another way to explore my own experience. Writing also puts my brain to work, which seems essential to my recovery. I also take walks, cane assisted, amongst trees, practicing Japanese 'forest bathing' or Shin-rin Yoku. Scientific studies indicate that trees help reduce the stress hormone, cortisol, and increase the immune defence system. And at least three to four times a week I go to a local pool. I can exercise in water with abandon. I love the water’s primal feel and wish it had been a part of my therapy from the beginning.

What have been/are your fears?

Of course, always at the back of my mind is the fear of having another stroke, a risk for which I'm genetically predisposed. But I tuck this away and carry on.

How did your family and friends feel and respond?

I've been very fortunate; my family and friends have been incredibly supportive and loving.