Survivor Voices Heard Loud and Clear in Stroke Awareness Month

Sharing member highlights from Stroke Awareness Month 2019

In many countries May is traditionally the month to talk about all things stroke. Across the USA and Europe Stroke Awareness Month has been marked on the calendar of stroke organizations and stakeholders as a key opportunity to raise public awareness and start conversations about stroke. 

Famous or not speaking publicly about stroke, while crucial to raising awareness and reducing the stigma of stroke, can be extremely daunting. But the decision to  ‘step up to the plate’ by several high-profile stroke survivors in May 2019 has given stroke perhaps higher visibility than ever and served as a vital support to those of us who have important stories and information to share.

The decisions of Michael Johnson, once the world’s fastest man, talking about his long journey to recovery after stroke and of Game of Thrones actress Emilia Clarke to share her story have been incredibly helpful in reaching the wider public and showing that with the right care, treatment and rehabilitation stroke is treatable and beatable. The death of movie director John Singleton at the age of 51, while just one of many less well known people who have lost their lives to stroke recently, did much to highlight the tragic impact of stroke, the fact that many strokes happen to younger people.

In the UK, the Stroke Association the country’s first ever TV stroke advertisement was aired in May as part of a partnership campaign with the UK’s Channel 4 network. The 60 second piece which is part of a wider media campaign, uses the voices and faces of stroke survivors to describe the moment that their stroke hit, the need for support with recovery and is working to ‘change the face’ of stroke survivors.

Elsewhere in Europe, members of SAFE kept the WSO #UpAgainAfterStroke campaign flag flying with a month-long focus on stroke rehabilitation and long-term support across the region. From politicians to family members a multitude of voices shared their perspectives on the urgent need to develop better and more equitable access to rehabilitation and care. The translation and dissemination of the European Burden of Stroke report gave policy weight to the awareness campaign offering a valuable advocacy tool for stroke organizations in the region. 

Outside Europe, but equally focused on stroke survivor experience, the new but fast-growing Michael and Francisca Foundation in Nigeria took the opportunity of Stroke Awareness Month to run a special event for stroke survivors to connect, share stories, challenges and inspiration. 

In the USA the American Stroke Association focused on the fact that the biggest single risk factor for stroke is having already had a stroke.  ASA’s campaign ‘Don’t let stroke strike twice’ was a supported by an online patient education resource highlighting key risk factors and encouraging survivors to ask their doctor to create a personalised stroke prevention plan.

It really seems like a change is happening in relation to stroke awareness and as we look forward to World Stroke Day, we will be learning from and building on the work of our members in May and collaborating to make the many voices of stroke sound loudly on October 29th.

Well done to all of our members who worked hard during May to raise stroke awareness. If you would like to share your Stroke Awareness Month highlights with us, you can post to our Facebook page or tag @WStrokeCampaign on twitter.

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 - Tom Head

The stories of stroke survivors are what drives our fight at the World Stroke Organization to achieve our goal of a world free from stroke. Welcome to our Stroke Survivor Stories series, which we'll pop up on the blog every Thursday, you may wish to contribute to this poignant narrative of stroke globally. Please contact Sarah.Belson@stroke.org.uk

Where were you when you had your stroke?

I was visiting relatives in Kent with my family. My stroke occurred at a very young age, shortly before my 3rd birthday so I don’t remember anything about what happened.

Could you access hospital?

My Mum, a nurse, realised that something was wrong and took me to the nearest GP in Kent, then to the local hospital. From there I was taken by ambulance to Guy’s Hospital in London.

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

Very few. I think everyone hoped the treatment and rehabilitation would minimise the effect of the stroke on my life although as I had to grow and develop there were lots of unknowns.

What was your experience of treatment and/or rehabilitation?

The NHS treatment was excellent throughout my childhood. I was seen by paediatric doctors and had regular physiotherapy to help with the walking difficulties and dystonia I suffered. There have been many challenges as the approach was to monitor and wait and see how my body developed and react with medications and treatments along the way. When I reached adulthood and moved around the country more I did find it more difficult to access treatment and to have continuity of care, but now have an excellent orthopaedic surgeon who monitors my progress and has operated on me to alleviate arthritic pain caused by my right sided weakness, dystonia and uneven gait.

What has helped you in your recovery?

My family who have been there from the beginning and took me to so many hospital appointments when I was young. As my stroke occurred so early in life I haven’t known any different so it’s a case of working out ways to overcome challenges rather than thinking how I did things before the stroke and how to do them after.

What have been/are your fears?

When I was young I feared being different and not able to do the same things as my friends. As I’ve gotten older the worries have mainly been focused on whether I can live independently and just how the wear and tear on my body because of the after affects of my stroke impact my day-to-day life. There is a lot of uncertainty and new health issues crop up because I’ve lived with right sided muscle weakness and dystonia for so long.

How did your family and friends feel and respond?

Naturally there have been anxieties along the way but on the whole I don’t feel I’ve been treated any differently. We have all had to adapt but 35 years on from my stroke it has shaped who I am but does not define me.

Stroke survivor stories - Youko Yamaguchi, Japan

The stories of stroke survivors are what drives our fight at the World Stroke Organization to achieve our goal of a world free from stroke. Welcome to our stroke survivor stories series, which we'll pop up on the blog every Thursday, you may wish to contribute to this poignant narrative of stroke globally. Please contact Sarah.Belson@stroke.org.uk

Where were you when the stroke happened?  

My wife, Youko Yamaguchi, was travelling with her friends 17 years ago. While chattering at a night club after dinner she had a subarachnoid haemorrhage at the age of 53. The hotel manager called an ambulance, and she was taken to an emergency hospital

Could you access hospital?

A phone call at 11 pm asked me to come to the hospital soon. I drove about 440 km all night, and arrived there at 7 am. After I approved the surgical operation, it took place immediately.  The shrinkage of blood vessels occurred 7 days after the operation and my wife suffered aphasia and became right side hemiplegic.

What expectations did you have for treatment, rehabilitation, recovery?

We didn’t know anything about aphasia, so we couldn’t imagine anything about treatment, rehabilitation and recovery.   She murmured “I am sorry, sorry, I made a serious thing! How should I manage many tasks to be done”. She couldn’t recognize that she couldn’t continue these tasks.  One month later without any special rehabilitation, she left the hospital.

What was your experience of treatment and/or rehabilitation?

Two days later, after we returned home, my wife was admitted to a rehabilitation hospital cerebrovascular center.  Here physical therapy, occupational therapy and speech therapy took place.  She was positive about the physical therapy because it was carried out in a large gym and she could connect with other patients. On the other hand, occupational therapy and speech therapy took place in a small private room, and therapists sat down side by side without noticing the appearance of my wife. They executed the curriculum without any advice or instruction from their superiors.  During three months stay, my wife’s communication didn’t improve clearly.  But, she could stand up and walk by herself and use a spoon and knife with her right hand.

What has helped in the recovery?

Three months later she moved to the another rehabilitation center in Yokohama for two months, which mainly focused on language rehabilitation. The speech therapist sat face to face with my wife, greeted and talked about easy topics.  Then, the language rehabilitation curriculum started. This speech therapist advised us to make a Japanese syllabary table. Each Hiragana was combined with each Chinese character which was easier to remember than Hiragana for my wife.  Using this table, rehabilitation was carried on.  Also, this speech therapist advised my wife to join the calligraphy circle which was open next door to the hospital.  After my wife left the hospital, we visited once every week for language rehabilitation for two and half years.   The speech therapist advised us to install specific software to my wife’s PC, and advised my wife to write and send a short mail to the therapist about any topics.  A few days later the return mail came back without fail. Video conversation through IPad and Facetime with daughters and grandchildren was also a great help for her rehabilitation.

What have been/are your fears?

When my wife has to live alone, how she can manage to live daily life without my support.   This is the most serious matter to us.

How did your family and friends feel and respond? 

Our two daughters were at a loss when the accident happened.  They lived apart from us and were too busy to help their mom due to their office works. But they afforded as much time as possible to talk, encourage and go shopping with mom in their holidays.   To close relatives and friends, I explained about aphasia and asked them to talk slowly and clearly and write on paper.  Now, the situation has improved. She can walk and use both hands, and conducts most housework.
My wife doesn’t hesitate to talk to close friend and relatives and goes shopping or enjoys chatting with them. 

Stroke survivor stories - Letlhogonolo Modise, South Africa

The stories of stroke survivors are what drives our fight at the World Stroke Organization to achieve our goal of a world free from stroke. Welcome to our stroke survivor stories series, which we'll pop up on the blog every Thursday, you may wish to contribute to this poignant narrative of stroke globally. Please contact Sarah.Belson@stroke.org.uk


Where were you when you had your stroke?

I was at school for a choir workshop. I wouldn’t say the way it happened was obvious. I didn’t experience any of the symptoms of the face drooping, arm weakness or speech difficulties, though my friends did make sure no time was wasted once they knew what was going on. It was a fast reaction to a stroke.

We were about to start warming up then suddenly I started feeling strange. My first reaction was to run out thinking I needed some air. The feeling continued. My friends who followed me outside tried whatever they could think of. I was sitting. Next thing I was lying on the floor with my eyes closed. I could hear my friends calling my mother and one of them crying, not knowing what was going on.

Could you access hospital?

Yes I could. Though I feel a lot of time was wasted on the road travelling to different hospitals and finding out certain equipment could only be accessed in one of the hospitals.

I’ve always thought to myself that’s how my chances of survival became slimmer.

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

My expectations were to get discharged from hospital where I had rehabilitation and get back to school to finish my final year of High School. Basically I thought I wouldn’t take years to recover from a stroke.

What was your experience of treatment and/or rehabilitation?

The first three years of rehabilitation were tough. My mind was on how my friends were at a different level of education than I was.

My emotions were still in shock from what happened.

I believe if you are emotionally ready for something then you won’t struggle to get yourself to where you want to be physically. I personally think I took longer to get to a certain point of recovery in my first three years compared to the years after those.

Through positive thinking I’m able to push myself to work harder.

What has helped you in your recovery?

Support from both my family and friends. Reading spiritual books in order to resolve my emotions. Ever since my emotions were resolved I feel more confident about the journey I’m currently on, the recovery journey. Having one of the best therapists was also a great addition to my recovery.

What have been/are your fears?

Before I feared missing out on life as I thought I was left behind as I was on a different level of education as my friends, but as time went by I have overcome that fear.  

Recently, I fear my children and their children having a stroke. I wish no one else has to experience a stroke. The struggles that come with it weren’t easy to get over. At such a young age it made things even more difficult to understand. When you have plans with your friends for your future and having to see that dream become impossible at the age and time you planned for it to happen. It hurts… a pain you wouldn’t wish upon anyone.

I fear my children or their children blaming me if they ever experience it.

How did your family and friends feel and respond?

At the time it was happening I believe their emotion was the fear of not knowing what exactly is going on and not knowing what they could do. The feeling of helplessness. But everyone just responded with support through prayer and visiting my family and me.

I feel blessed to have such supportive family and friends. Having people support you without asking makes a person wonder what did I do to deserve so much support. If the support was less or no support at all I think it would’ve made life harder and acceptance almost impossible. I probably would’ve taken longer to get to where I currently am in my journey to recovery.

Nobody should go through this alone.

Stroke support stories: National Stroke League of Hungary

The World Stroke Organisation is committed to developing more Stroke Support Organizations (SSOs) and stroke support activities around the world. Supportive activity can include information and advice, peer support, family counselling, rehabilitation therapy or welfare services. We want to promote this invaluable activity as much as we can. If you would like to share your stories of stroke support please contact Sarah.Belson@stroke.org.uk

What has inspired you to be involved in stroke support?

Krisztina (SSO President): It was 17 years ago when my husband had a stroke. So in my case there was a personal involvement when seven years ago I accepted the request to be the leader of the Hungarian Stroke Support Organisation. Besides this personal involvement I had several personal contacts with Hungarian neurologists and rehabilitation specialists.

Eszter (SSO volunteer): It was my very first day at the hospital as a physiotherapy student, when I decided that I wanted to work with stroke patients in the future. In the summer I volunteered in a hospital, where my first day I was sent to the stroke rehabilitation department. To be honest, that time I knew so little about neurology and more precisely stroke, but of course I realized immediately that this is a really serious condition which has a tremendous impact not only on the stroke patient's life but on their families and friends as well.  

Frankly, I was concerned at first about how I would be able to help them and what should I say to encourage them. How would I give them strength not to give up and continue doing so much work for their recovery? Despite the fact that I was supposed to be the person who helped them, they were the ones who taught me a lot!

I have never seen that willpower, that motivation and strength in how these patients carried on with their lives and did their best in the rehabilitation process. Since then I am amazed by stroke patients and I respect them.

How did the project come about?

Krisztina: My husband was 52 years old when he had an ischaemic stroke with complete unilateral obstruction, resulting in hemiplegia and aphasia. We went through the acute phase, early and then late rehabilitation phase, struggling together with all of the condition’s consequences from loosing his job to psychological effects.

I was also young - at the end of my 40s and since then I have been actively involved in his rehabilitation, and can provide useful information, advice and answers to questions from patients suffering from the same condition. That’s why I was elected to be the leader of the National Stroke League of Hungary.

What does stroke support look like in your country?

Each year approximately 40-45 000 people have a stroke in Hungary. This number shows a slightly decreasing tendency, and also the rehabilitation outcomes are more positive. In the last 15 years the number of prevention campaigns has increased, which is one of the goals of the League. Also we are seeing the benefits of the growing availability of thrombolysis.

What have been the highs so far for your project?

The League is a founding member of the National Patient Forum (Nemzeti Betegfórum - NBF), a civil advocacy forum in Hungary. We have secured an individual, autonomous section in the Forum for cerebrovascular diseases. Besides being one of the founding members of the NBF, the League also took part in the formation of the Alliance of Patients Organizations in Hungary (BEMOSZ).

What have been some of the outcomes of the project?

We have built relationships with two well-known Hungarian rehabilitation institutes. In one of the institutes we were successful in ensuring that two of our members could have access to the expensive muscle relaxant botox therapy for free.

We play a role in expanding stroke patients’ access to innovative medicines, since we participate in the ministerial discussions concerning new stroke prevention and rehabilitation medicines.

What has been the feedback from stroke survivors to the project?

The League provides an individual consulting service, giving useful information to stroke patients and their families with reference to rehabilitation, legal questions and accessibility options to electrical devices. It means a great help to families, who face stroke as a sudden event in their lives. Unfortunately financial resources of civil patients associations in Hungary are very scarce. We do not get any governmental support and tender opportunities are complicated and almost inaccessible. Therefore mainly have human resources through volunteers.

What has been response from others?

The League often participates in media and we are frequently invited to national campaigns and training programmes organised by innovative pharmaceutical companies. The European Patients’ Forum has elected us among nine patient associations to a Capacity Building Project. We take part in the World Stroke Day event in Hungary with presentations and brochures and also in screening programmes, organised by local governments. Moreover, we maintain excellent relationships with several Hungarian patient associations, frequently meeting each other and exchanging information and experiences.

The Hungarian Stroke Support Organisation is a member of the Stroke Alliance for Europe http://www.safestroke.eu/
The Stroke Alliance for Europe is a member of the World Stroke Organization http://www.world-stroke.org/

Stroke survivor stories - Kasia Siewruk, Poland

The stories of stroke survivors are what drives our fight at the World Stroke Organization to achieve our goal of a world free from stroke. Welcome to our stroke survivor stories series, which we'll pop up on the blog every Thursday, you may wish to contribute to this poignant narrative of stroke globally. Please contact Sarah.Belson@stroke.org.uk

Where were you when you had your stroke? 

In spring 2012, I had a TIA, which scared me to death, because it happened behind the wheel of a car. Back then I didn't know that it was a TIA, so I wasn't that concerned about it. My first stroke happened in December 2014 in a toilet. I did everything to prevent a second one, but it happened in August 2016 while riding a bike with my mom on vacation. I was lucky. All three times I was with someone – the TIA with a panicked friend, the first stroke my flatmate was at home and she reacted pretty fast (my boyfriend wouldn't wake up). Last time I was with my mom.

Could you access hospital?

Both times I was taken by ambulance. With the TIA no-one recognized a stroke and in the end I refused to go to hospital. I'm not sure whether my flatmate recognized the stroke. But she knew that something was seriously bad, so called for an ambulance very fast. The second stroke (a mild one) I recognized myself.

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

At the beginning I expected that within a few months I would be back to my 'old life'. After these few months I found out that it won't be that easy.

What was your experience of treatment and/or rehabilitation?

The immediate treatment was ok, I guess. In the end I'm alive and 'almost' healthy. I think that the experience with long term treatment and rehabilitation has been worse. It all depends on the specialist, luck and access to friends in hospitals, hard work and research by me and my family, and money to pay for private visits.

About rehabilitation - it depends on the place. I had rehabilitation on four hospital wards, one excellent, one very good, one ok and one very poor. My private physiotherapist is great and seems to be well-qualified.

What has helped you in your recovery?

Good physiotherapists and also internet sources. My family has helped me very much, they gave me comfort. And last but not least, my hard work.

What have been/are your fears?

My biggest fear is that I will never have a peaceful, comfortable life, even if I would work for it very much. And I'm afraid of the third stroke. Before the second one I thought that the cause of stroke was found and eliminated. The second one is a mystery which I need to be solved, and that makes me feel troubled and scared.

How did your family and friends feel and respond?

At the beginning all my loved ones were just lovely. My family were a bit overprotective, but everyone gave me full support and didn't leave me by myself. I found most of my friends were great supportive people and if, as we say in Polish, we find our true friends when we become poor or unwell, I'm certain that I have plenty of true friends. However, I regret the loneliness that I am left with. 

To hear more about Kasia's experiences please visit her blogs:
Polish blog, lewaczka.pl and English version of her blog stroketales.com

Stroke survivor stories - Mrs Jayatilake

The stories of stroke survivors are what drives our fight at the World Stroke Organization to achieve our goal of a world free from stroke. Welcome to our stroke survivor stories series, which we'll pop up on the blog every Thursday, you may wish to contribute to this poignant narrative of stroke globally. Please contact Sarah.Belson@stroke.org.uk

Where were you when you had your stroke?  

It was early October 2016, I was a fifty three year old stenographer at a leading institute in Colombo. I had brought my breakfast to my office and was engaged in my routine work. Suddenly, I wanted to phone my husband. I was trying to talk but I noticed that my speech was slurring. My husband too had noticed this and thought that I was pretending. As the slurring continued, I could not convey my message to my husband. He said he would come to my office and he advised me to go to hospital.

Could you access hospital?

I met my husband at the hospital and met a doctor. The doctor advised us that I had the symptoms of a stroke and needed to get admitted immediately for a CT scan of the brain. I was frightened, and was admitted to Colombo South Teaching Hospital. The CT scan was done but it was normal. After the overnight sleep, I got up in the morning. Then I noticed that the left side of my face, left arm and left leg were paralysed.

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

I was shocked. My husband and son were close by my side with desperate faces. One of my relatives volunteered as my care giver. I was frustrated and helpless when I thought of the care I rendered towards my family. Daily I cried, asking God why I was given this sort of terrible punishment. Despite counselling, I was not cooperating in physiotherapy and occupational therapy.  I did not want to live because how could I engage in my routine household work or my office work with the weakness of the left side of my body.

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

After two days in the hospital, I was transferred to the stroke unit of the National Hospital, Colombo. The day I was admitted to the stroke unit, the doctor ordered a repeat CT scan of my brain. Next day, I was seen by the senior consultant neurologist and told that as I had four major risk factors for stroke, they would commence medications to control these to prevent further strokes and at the same time commence daily physiotherapy, occupational therapy and speech therapy.

What has helped you in your recovery?

At the end of the stroke meeting, the entire stroke unit team was around me, the consultant neurologist was talking with me but I was not answering. She recognised that I was depressed and she read my thoughts correctly. Since then I engaged in my routine exercises with  courage and hope. At last, after two months of extensive schedules of continuous physio and occupational therapy, I was able to walk with support but my arm remained weaker than my leg. My speech was back to normal. I was able to eat prepared food, dress with help, and able to do toileting with minimal support.

What have been/are your fears?

My fear was what further disability I would have and whether I would die. Now I am leading a totally different life style - which I do not like, but I keep hope and I’ll be engaging in more and more meditation in the future. 

Stroke survivor stories - Siew Cheong

The stories of stroke survivors are what drives our fight at the World Stroke Organization to achieve our goal of a world free from stroke. Welcome to our stroke survivor stories series, which we'll pop up on the blog every Thursday, you may wish to contribute to this poignant narrative of stroke globally. Please contact Sarah.Belson@stroke.org.uk

Where were you when you had your stroke?  

For me there was no warning. In 2007, I woke up, played badminton, went to sleep and when I opened my eyes my whole world had changed. Words that I had spoken my whole life had disappeared. Physically, I looked normal – I could walk and eat and watch TV. However, when my wife asked “What time is it?” I could not answer.

Could you access hospital?

Later, they brought me to see the doctor, and the doctor asked me my full name, my words were gone and I said, “I know, I know.” This is when my family knew something was very wrong. The doctor arranged for me to go to the A&E ward. Since I was walking, functioning and eating fine I was not put as a priority case.

What expectations did you have for your treatment and recovery?

For over an hour, I walked up and down the waiting room not knowing what was wrong with me. It was a very scary and strange experience. I could only pray. When it was finally my turn, the doctors did some scans and tests. They told my family that I had suffered from a stroke; my speech was affected but the worst was over. I lost usage of the right side of my body and also 99% of my speech.

Before that day, my family never guessed I would be the sort of person that would get a stroke. I was the one who made them drink carrot juice and eat wholemeal rice. We thought strokes were for elderly, overweight people, who smoked and did not exercise.

What has helped you in your recovery?

I had always been healthy. I loved sports…my favourite is badminton and until my stroke, I was playing badminton three times a week. After my stroke, I worked hard with the speech therapist and did mild exercise. The competitive sporting side of me took over and I was determined to improve. Over time, I went from not knowing my name to regaining 80% of my speech. Apart from feeling a little more tired and losing my temper a bit more, I was fine. I was even starting to play a bit of light badminton. Life was starting to become normal again.

That was until my second stroke. My second stroke was a lot more serious. So serious, the doctors said that I would not walk or function normally again. I was in the hospital for five months, but I was determined not to give up.

How did your family and friends feel and respond?

My wife supported me every step of the way. Even when the doctors were unsure if I would ever regain what I lost, I was sure.

Today, I have gone from having no movement in both legs to being able to walk for short periods of time with my stick. I still can’t use my right side but I was always left handed anyway. My family have been very supportive and are determined that I have a normal life. My wife especially has been my greatest help. She and I have travelled the world - visiting The Great Wall of China and going to Ephesus to see the Greek ruins, where there was a hot, dusty and an extremely jagged path. Some people told my family off for bringing me there, but I don’t think that just because I am not as able-bodied I should miss out or ever give up. Just because it is not as easy does not mean that it is impossible. 

Stroke survivor stories - Mrs. Chithra Padmini

The stories of stroke survivors are what drives our fight at the World Stroke Organization to achieve our goal of a world free from stroke. Welcome to our stroke survivor stories series, which we'll pop up on the blog every Thursday, you may wish to contribute to this poignant narrative of stroke globally. Please contact Sarah.Belson@stroke.org.uk

Where were you when you had your stroke?  

Ten years back, when I was forty-two, I flew to Dubai to be employed as a domestic helper. When I was on the verge of fifty, I had ill health, so I flew back to Sri Lanka in late September 2016. The following day, suddenly, I fell down in my room. I noticed that I could not talk and move my right arm and right leg.

Could you access hospital?

I was helpless because nobody was at home. I started dragging myself along the floor slowly and was able to come to the verandah. There I saw a neighbour, so I waved my left hand which was movable. Luckily, she saw me and ran to me quickly. Then with the help of my neighbours, I was admitted to a local hospital and was found to be anaemic and was transfused with two pints of blood. On the same day, I was transferred to the National Hospital in Colombo for a CT scan of my brain. I was diagnosed as having a stroke and was transferred to the stroke unit of the National Hospital.

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

By the time I was admitted to the stroke unit, I was unable to talk, walk and swallow. But my vision, hearing and bodily functions were not affected. I feared I would be bed-ridden and I felt that my life was not worth living disabled. I started losing my courage, strength and hopes.

       

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

The next day, I heard a gentle female voice from my bedside. She was the Doctor-in-charge of the stroke unit. She took plenty of time to explain my condition to me and my family and she advised me to engage in physiotherapy, occupational therapy and speech therapy daily. She also explained the importance of not losing courage. I just listened to her with tears in my eyes. I could not do anything else as I could not utter a word. 

What has helped you in your recovery?

Slowly, day by day, I started improving with medications and the rehabilitation programme. At the end of the first week, I was able to talk, sit up in the bed, walk with support and swallow semi solids. My hopes started blossoming. Everyday, I had to undergo well planned schedules of physiotherapy and occupational therapy. The counsellor was a kind lady who met me frequently. The social worker helped me to get the financial support that was granted by the government. After staying one month in the stroke unit, I was completely recovered without any residual deficits which I did not expect at all at the outset.

How did your family and friends feel and respond?

Although members of my family were shocked and disappointed, they gave me the maximum care and support that was vital at that moment. 

Stroke survivor stories - Mak Kwok Fai

The stories of stroke survivors are what drives our fight at the World Stroke Organization to achieve our goal of a world free from stroke. Welcome to our stroke survivor stories series, which we'll pop up on the blog every Thursday, you may wish to contribute to this poignant narrative of stroke globally. Please contact Sarah.Belson@stroke.org.uk

Where were you when you had your stroke?  

I got a stroke when I was 29. Mine was a haemorrhagic stroke.

Could you access hospital?

One afternoon, in the office of the insurance company I worked for, a severe pain shot through my head and I felt dizzy. My colleagues called an ambulance and sent me to hospital immediately.

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

The experience was frustrating. Sometimes, I would throw a tantrum, and refuse to go for therapy or do any exercises on my own. But then my mother would cry, and I would relent, realising that I owed it to her to recover. She would said, “People go through ups and downs, and that to reach up is to move forward.”

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

I spent my 30^th birthday at the Singapore General Hospital. My friends and colleagues surprised me on my birthday, bringing me a cake. The doctors even gave me a birthday card, while the nurses sang a song together with me. This was the most memorable birthday I have ever spent.

I was hospitalised for a total of three months. After I was discharged and went home, I initially moved into my mom’s room so that it was easier for her to take care of me. I was still wheelchair-bound at the time, and was unable to speak nor write. I underwent physiotherapy, occupational therapy and speech therapy to improve my physical motion and speech.

What has helped you in your recovery?

I feel that there is one common remedy that is able to help all the stroke survivors, regardless of age, sex or race, and that is — LOVE.

After I recovered sufficiently, I wrote a book: “My Stroke Experience at 29”. The message I wanted to spread is that stroke does not happen only to the elderly; in fact, younger patients, who assume it cannot happen to them, may be caught unawares.

Every fall, every step, and every experience after my stroke has been a learning process for myself and my family members. With the help of everyone who loved and cared for me, I grew to become more independent. They believed in me. And their loving care was the best and truest gift I have ever received in my life.

What have been/are your fears?

After I regained consciousness, I realized I suffered a stroke and had already undergone brain surgery. My first thought was “Why me, how can it happen when I was so young?”

How did your family and friends feel and respond?

My family and friends would visit me daily in the hospital, while my colleagues saw me there regularly too.

My mom cared for me the entire day at first, and I am deeply grateful for her love and sacrifices through this difficult time.