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

Overcoming culture and cost to deliver better stroke treatment in Nigeria

In this interview with MacDonald Oguike, the World Stroke Award Winner, shares his perspectives on key treatment issues for stroke patients in Nigeria and how the MasterStroke campaign aims to address them. 

The World Stroke Campaign was focussed on raising awareness that stroke is treatable. What would you say are the key issues around stroke treatment in Nigeria?

I'd say there are several issues around stroke treatment in Nigeria, but the three I'd like to highlight include public perception of stroke, the cost of treatment and the absence of stroke units in Nigeria. Regarding public perception, many cultures within Nigeria see stroke as a 'spiritual' issue and tend to seek solutions from spiritual homes which cannot provide adequate treatment and support to stroke victims. I feel public education and awareness on the risk factors and how to identify them will remove this cultural barrier over time.

Many people in Nigeria live in poverty and cannot afford the cost of stroke treatment and rehabilitation. Health insurance schemes which could be a source of support for individuals with stroke are not common in Nigeria. This really makes cost a key issue in Nigeria.

Your MasterStroke campaign made really strong use of digital and mobile technology, why did you choose this approach to awareness raising?

We chose a blended approach to the campaign, combining physical events across different states in Nigeria with a social media campaign.  Regarding the social media campaign we chose it for one particular reason; mobile devices and social media dominate the everyday lives of Nigerians.  CNN estimates that around 30-40 million Nigerians are now online and go through so many sites. For us at MasterStroke we see this as a very effective advocacy platform that will help to influence policy makers as well as creating wider awareness of stroke.

What were the most successful parts of the campaign?

For the social media campaign, the interaction with people all over Nigeria was remarkable. People shared their own stroke stories and reached out to us via our social media handles to ask about our program. From the physical events, we were awed by how many people showed up for our free blood pressure and blood sugar tests. It was good to see people take advantage of our charity events as these tests would cost $5-$10 in Nigerian hospitals.

How would you say the campaign has made an impact on the public and health policy makers?

I feel the campaign has helped raise public awareness of stroke in Nigeria. Through our campaign people are asking more questions about stroke. It's hard to gauge the policy impact as the campaign was not directly targeted at them, but we feel our campaign has generated political attention and we have had local government political leaders reach out to us to understand what we do at MasterStroke.

What does it mean to you to receive the World Stroke Award for outstanding individual achievement?

It means a lot to me to receive this award. I am tempted to keep it for myself, but in all fairness this award really belongs to the entire MasterStroke team and everyone who has helped grow the project over the past 16 months.  It is a testament that we are on the right track and all their effort and contribution didn't go unnoticed.

Advocacy work is work that involves selfless service to the community. It is all about providing services to others. Most people will never know how much effort and energy is put into advocacy work. Personally, last year was a very difficult year for me; juggling my day job and leading the MasterStroke project was too much workload for one person. Occasionally I felt overwhelmed, but the passion for the work and the energy of the team kept me going. Being recognized by the World Stroke Organization is an extraordinary achievement. This award means the hard work of the team has really paid off. This award for me is not the end but just the beginning of the many things we will accomplish via the MasterStroke campaign in Africa.

Stroke support stories - Dr Arosha Siriwardana, Sri Lanka

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

The establishment of the first stroke support group in Sri Lanka

Dr Arosha Siriwardana, Senior Medical Officer, Neurology Unit, National Hospital of Sri Lanka, tells us about the new stroke support group.

Context

There has been a growth in stroke incidence in Sri Lanka since 1990 (Global Burden of Disease 2010) and stroke is the second leading cause of death in the country (WHO 2012). There are also a significant proportion of stroke survivors of working age in Sri Lanka.

Response

Dr Padma Gunaratne, Senior Consultant Neurologist at the National Hospital of Sri Lanka, recognised the need for increased support for stroke survivors and she mobilised a team of professionals to organise the stroke support group. The team consists of doctors, nurses, therapists, social services officers, counsellors and care givers.

The vision

On 28^th January 2017, the first stroke support meeting was held and the group was established. 26 stroke survivors attended. It is a mixed gender group and members have both speech and motor disabilities. During the meeting, the participants registered as members of the group and the objectives of the group were agreed in all three languages: Sinhala; Tamil and English.

Dr Gunaratne welcomed the new  members and shared the vision to establish more groups across Sri Lanka. The Deputy Director General of the National Hospital, Dr Jasinghe talked about the popularity of social support groups in other countries and the advantages of setting up stroke support groups in every main hospital. President of the National Stroke Association of Sri Lanka, Dr Riffsy, highlighted the importance of sustaining this activity in future. 

Discussion
Mr Bandara, from the Social Services Department of Sri Lanka, explained the role the department can play in providing financial support and assistance devices such as wheelchairs and walking aids for stroke survivors.

One of the care givers, Mrs Ovitigedera, told the group about her experience as a successful care giver of her husband who was affected by a stroke.

Other participants shared their stories and experiences, which at times were quite emotional. They were worried about the abilities that they have lost and they dream about getting back to their previous lifestyles. Some expressed their happiness about still being alive. 

The issues raised in the question and answer session included questions about the length of rehabilitation treatment and living with epilepsy.

The future

As Buddhists, Dr Siriwardanawe explains that they have been taught to listen to Dhamma sermons, to learn and remember them and to practice them. In Sri Lanka, stroke support groups can help people to practice Dhamma, demonstrating altruism, generosity and humanity. Ultimately, all members of the stroke team can also benefit from developing and providing stroke support for stroke survivors and their families. Dr Siriwardanawe feels confident that the stroke support groups will be cherished by Sri Lankans in future.

If you would like to find out more about the stroke support activities in Sri Lanka, please contact sarah.belson@stroke.org.uk 

Seven minutes in stroke - Luis M. T. Jesus

1. What inspired you towards neuroscience?

It all started in a summer school I attended during my Ph.D. back in 1998, where one of the keynote speakers was the phonologist Professor Andrea Calabrese, who presented results from discourse analysis of a Person with Aphasia that could inform health professional in their daily practice, and I was able to attend various other presentations related to neuroscience. Then, after completing my Ph.D. in 2001, during my first years as a lecturer at the School of Health Sciences (ESSUA), University of Aveiro, Portugal, I contacted Professor Alexandre Castro Caldas who generously sent me copies of all his work related to Aphasia. I then familiarised myself with this and other literature that lead to the first draft of a research project in Aphasia.

2. Why stroke?

Cardiovascular diseases, including stroke, are the first cause of death and disability in Portugal and, consequently, one of the most frequent cause of hospitalisation. A significant part of stroke related costs are related to rehabilitation (physiotherapy, occupational therapy and speech and language therapy). Given the current situation in our country and the fact that I have been since 2001 an academic based at a School of Health Sciences, where these disciplines are taught and researched, the promotion of successful community reintegration of stroke survivors and the integrated care where several areas of rehabilitation are considered, has been one of the aims of our research.

3. What have been the highs so far?

The highs of my academic life have very much been related to the successful completion of my postgraduate students research projects and their ultimate success as academics, scientists and clinicians. Facilitating and fostering the research of young clinicians and seeing them succeed afterwards has given me the greatest sense of self-completion over the last fifteen years.

4. What have been the lows?

I’m not sure I could really call some of the usual challenges every academic has to face, a true low. I look at this as a necessary step toward our greatest achievements. The constant challenge limited funding imposed on you, and the short-sighted vision of some strategic decisions constrain the impact of some work you develop. However, it has also encouraged me to take risks and tackle scientific problems that keep challenging me to learn new things.

5. How do you balance work life with the needs of home life?

My love for life and those that are closest to me have always been my greatest source of inspiration. I was blessed with great grandparents, parents, brother and friends that always supported me along my whole life, and I was also fortunate to have crossed paths with the love of my life whom I have been married to over the past twelve years. We have two beautiful children I cherish deep in my heart. So I could say I struggle, like any other academic, trying to juggle my daily work with a full personal life. The right balance between work, people, sports, visual arts, music and literature, has always brightened my days.

6. Who are your most important mentors and how did you find them?

My greatest mentors have been my undergraduate project supervisors (Professor Francisco Vaz, University of Aveiro, Portugal; José Carlos Principe, University of Florida, USA), my M.Sc. (Dr. Gavin Cawley, University of East Anglia, UK) and Ph.D. (Dr. Christine Shadle, Haskins Laboratories, USA) supervisors. Also the lab directors at the universities where I worked as a researcher have been a great inspiration: Professor Steven Cox, University of East Anglia, UK; Professor Robert Damper, University of Southampton, UK; Professor Paulo Ferreira and Dr. Armando Pinho, University of Aveiro, Portugal.

7. What are your most important collaborations and how have you built them?

Establishing interdisciplinary and international research collaborations in life sciences has long been the top priority in my agenda. Our longest collaboration in Aphasia/ Stroke has been with City, University of London, UK. I was just about to start the supervision of a new Ph.D. student, so in August 2006 I sent an e-mail to Professor Jane Marshall to arrange a visit to London. Given the nature of the project we wanted to develop, Jane introduced me to Dr. Madeline Cruice, whom I have worked with ever since. We have both been members of the Collaboration of Aphasia Trialists (CATs) network over the last three years.

Luis M. T. Jesus is a Professor Coordenador (Associate Professor / Reader) at the University of Aveiro, Portugal lmtj@ua.pt

Stroke support stories - MacDonald Oguike, Nigeria

The World Stroke Organisation is committed to develop 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 and 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

Winner of the 2016 World Stroke Campaign Award for outstanding individual achievement, MacDonald Oguike of Acha Memorial Foundation in Nigeria, shares his story of becoming involved in stroke support.  

What has inspired you to be involved in stroke support?

My brother and I lost my dad to stroke in 2015. After his death, we were inspired to educate other people about stroke because we felt this was the best way to keep his memory alive.

How did the project come about?

Before he passed away, my dad’s stroke left him with a movement disability for seven years. This could have been prevented during the early stages if we had more education and awareness about stroke. After his death we heard so many stories about people having the same experience with stroke in Nigeria. In many cases, they ended up with a disability or died. We felt we could close this gap and help people at the early stages. For us, strokes need to be prevented in the first place. This was how the project “MasterStroke” began. From March to November 2015, we started creating a project plan and decided to set up a non-profit to drive the project goals.

What does stroke support look like in your country?

Many SSOs focus on awareness creation. In Nigeria there are about 11- 15 different SSOs. Each has a different agenda. At the World Stroke Congress in 2016, some of these SSOs met and discussed the possibility of coming together to form a national stroke body that would drive stroke support activities across the country. This vision is currently being explored.

What have been the highs so far for your project? 

In 2016, the MasterStroke project reached 45,530+ people with lifesaving education about stroke prevention and treatment. In Nigeria this information about stroke prevention helped many people act FAST, and find the right hospitals for proper treatment and rehabilitation support. We also partnered with local doctors and nurses to provide free blood pressure and sugar level checks to more than 3,500 Nigerians. Free counselling was provided to 85% of people diagnosed with hypertension during the campaigns.

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

Feedback has been good overall. Many people acknowledge the work we have done around awareness and education. This said, some stroke survivors are looking for us to provide additional support such as sponsorship of rehabilitation activities or creation of a stroke survivors network to facilitate conversations about how their recovery is going. With more funding, we will expand the services we offer to stroke survivors.

What has been the response from others – community, doctors, and politicians?

Response to our work has been very positive. We partnered with local doctors and nurses to provide free blood pressure and sugar level checks to local communities. In 2016, we also partnered with many local government politicians to roll out awareness events in their local communities. Turn out to our events have been large and people within the community we visited were very happy we showed up.

To find out more about MacDonald's work please visit:

www.achafoundation.com

www.masterstrokeproject.com