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.

H.A.S. SSO-Hellenic Alliance/Action for Stroke: the first SSO in Greece Hariklia Proios and Konstantinos Vadikolias

What is H.A.S. SSO?

During the Greek National Stoke Conference 2016, organized by the Hellenic Society of Cerebrovascular Diseases, in Thessaloniki Greece, the stroke patient organization held the first ever platform meeting on calling for better stroke care and prevention across Greece. H.A.S. SSO (Hellenic Alliance/Action for Stroke - Stroke Support Organization) was established as a member of the Stroke Alliance for Europe, SAFE (1) with the major goal of echoing a national awareness campaign on primary prevention and treatment of stroke to avoid needless mortality long-term impairments, and discrimination as well as mandate better stroke training for the community at large. 

The organization emphasizes the cooperation of local, state services and to meet the ongoing needs of individuals in order to unify those individuals with stroke as well as family members. Emphasis is on support outreach and promotion of scientific research on stroke, on the field of prevention, treatment, rehabilitation and quality of life issues (2,3,4) including quality of communication (5).

Following the regional meeting of SAFE in Athens 2016, H.A.S. continues to develop with aims to establish good communication and cooperation between members, to exchange experiences, views and knowledge in order to disseminate this information throughout the county. To achieve these goals participation in a wide variety of activities- stroke related internet based support group (6), lectures, speeches, conferences, debate, seminars and social events should be mandated. Online social support groups, are more preferred even from live groups (7,8). With web-based supportive intervention, care givers are more informed about disorders and could more effectively communicate with their stroke patients as well as their family.

H.A.S. hopes to open up a discussion about establishing guidelines and a new framework for the Greek government and spread good practice with regard to prevention of Stroke and ways of helping individuals with strokes and their families once it has occurred. One area of immediate importance is to apply pressure for better organization of the treatment of strokes because, in Greece, the development of STROKE UNITS is particularly low and there are currently very few of them throughout the country. Issues of concern for H.A.S. are that it is unlikely that any major investments in Greece can be made in the next few years, in view of the recent crisis and capital controls.

Furthermore, group support is not common practice and/or non-existent throughout the country. This creates “lack of trust” and hinders further involvement in the organization’s structure and activities, which overall results in difficulty in achieving unitary health care. Thus, a better sense of community as it relates to stroke is on the agenda. These as well as cultural differences should be taken under formal consideration.

Establishing a support forum is a big challenge for the nation and even more so globally. This forum may be expanded on in other countries where such structures do not exist. Compare corresponding findings and knowledge to Balkan and Mediterranean countries, like Spain, Portugal, Italy in the area and internationally and enhance its broad application. This is especially viable for other countries that do not have established stroke guidelines.  It is important to emphasis the improvement of prevention and quality of care will reduce the physical, mental social as well as financial costs of stroke for the country and Europe.

References

(1) Levy S. SAFE: The Stroke Alliance for Europe. Sandra Levy. 2010 International Journal of Stroke, World Stroke Organization Vol 5, December 2010, 483.

(2) Kontodimopoulos, N., Niakas, D. & Pappa, E. (2005). Validating and norming of the Greek SF-36 health Survey. Quality of Life Research, 14, 1433-1438.

(3) Lin, K.C., Fu, T., Wu, C.Y., Hsieh, C.J. (2011). Assessing the Stroke-Specific Quality of Life for Outcome Measurement in Stroke Rehabilitation: Minimal Detectable Change and Clinically Important Difference. Health and Quality of Life Outcomes, 9, 5-13.

(4)  Carod-Artal, F.J., Egibo, J.A. (2009). Quality of Life after Stroke: The Importance of a Good Recovery. Cerebrovascular Diseases, 27(1), 204-214.

(5) Paul DR, Frattali CM, Holland AL, Thompson CK, Caperton CJ, Slater SC. (2004) The American Speech-Language-Hearing Association Quality of Communication Life Scale (QCL): Manual. American Speech-Language-Hearing Association; Rockville

(6)  E.P. Kouki, M.H. Kosmidis, H. Proios, The usefulness of Facebook or Website for Information about Aphasia, Encephalos, 53, p.76-83, 2016.

(7) De Simoni Anna, Shanks, Andrew, Chantal Balasooriya-Smeekens, Mant, Jonathan, Stroke survivors and their families receive information and support on an individual basis from online forum: descriptive analysis of a population of 2348 patients and qualitative study of a sample of participants. BMJ journal, Volume 6, Issue 4, e010501; D01:10.

(8) Rosa Spierings, Andre. Burden of Stroke Board Meeting, short presentation, Amsterdam 2016.

Raising awareness of the importance and dimensions of stroke treatment and rehabilitation in Malaysia

Cheras Rehabilitation Hospital in Malaysia (Hospital Rehabilitasi Cheras/HRC) was awarded a World Stroke Campaign Award for its work to raise awareness of key issues in treatment and rehabilitation of stroke patients. Here, project lead Dr Norhayati Hussein sets out why HRC got behind the 'Stroke is Treatable' campaign and how they went about raising awareness and engagement of senior government, clinicians, patients and families.

What would you say are the key issues in stroke treatment? 

Stroke is more than a brain attack. It is a multidimensional life-altering event that, as well as affecting stroke survivors, affects their families, healthcare resources and wider society. Stroke patients can really struggle with accepting the effect of stroke on their lives and many find it difficult to adjust to a different life. For some, the reversal of caring roles following a stroke can also be really challenging. For these reasons rehabilitation is an incredibly important part of the treatment pathway for stroke patients. Previously, there has been much emphasis on the vascular pathology of stroke and acute treatments. Primary and secondary stroke prevention strategies are important and while the use of thrombolysis therapy has benefited a small proportion of patients, the majority of stroke patients are still affected by stroke- related impairments. The focus of stroke care needs to place equal emphasis on promoting recovery, in line with the growing evidence of the importance of stroke rehabilitation interventions. The challenge lies in ensuring that research gets translated into practice to ensure a comprehensive and balanced stroke care which incorporates rehabilitation as a major component.

Why did Cheras Rehabilitation Hospital choose this particular approach to increasing awareness and understanding treatment needs of stroke patients? 

 Hospital Rehabilitasi Cheras (HRC) / Cheras Rehabilitation Hospital is a rehabilitation facility which offers specialised stroke rehabilitation service. We strongly believe that rehabilitation is a critical step in the stroke treatment process and were committed to get behind the campaign as a way to raise awareness and action around stroke rehabilitation.

The strength of our campaign was the string of events, specially designed to encourage everyone to build awareness, drive action and push for better access to stroke treatments, with a focus on rehabilitation. The 360-degrees approach which we implemented was simple, yet creative and designed to cut across all target groups.

 What would you say were the most successful parts of the campaign? 

 The campaign was successfully organized in collaboration with all services directly involved in stroke rehabilitation and truly embraced the tagline ‘Awareness, Access, Action’. Each aspect of the campaign is a winner in its own right. For the first time, the World Stroke Day brochure and infographic was translated to Bahasa Melayu which is the national language. This allowed us to reach a wider target audience for the World Stroke Campaign and to increase stroke awareness in Malaysia. Involving people in sharing the message through our stroke Infographic Competition generated wide participation from medical staff and the public - including a stroke survivor.

The Hospital CME highlighted malignant MCA Infarct, a previously life-threatening condition, while a patient- inspired ‘Santai Senam Silat’ incorporates traditional Malay martial art as means of wellness.

Our ‘Stroke for An Hour’ event was designed for caregivers to find out how it feels to physically experience a stroke and to instil the importance of preventing complications related to hemiplegia and unilateral neglect. Low-cost materials were used to simulate role-play activities in a ‘hemiplegic’ manner; focusing on transfer techniques, positioning and mobility. Sessions with catchy names eg ‘Single Magic Hand’, ‘Express Your Need’ and ‘Now You See...Now You Don’t’ allowed people to experience for themselves the significant and sometimes unseen effects of stroke on everyday tasks and communication.

In addition to participatory events, we organized interactive booths highlighting the various interdisciplinary teams involved in the rehabilitation management of stroke patients. A special interactive booth on Sexuality and Intimacy was an eye-opener to the often less discussed sexuality aspect of life after stroke.

There was also live demonstration on music therapy and art-doodling. This is in line with increasing evidence on music therapy and art therapy as treatment approaches which confer benefits to stroke survivors by improving fine-motor, visuo-spatial, eye-hand coordination and providing positive emotional benefit.

We also took the initiative to improve access to stroke rehabilitation in Hospital Rehabilitasi Cheras. A session aptly named ‘Information & Exposure: You Ask, We Answer’ was planned to provide a platform for interested parties to pose questions about the rehabilitation service offered for stroke patients. We also published World of HRC: NeurOne - a bulletin on the neurological rehabilitation service, focusing on stroke and stroke survivors.

As further proof that stroke is treatable and beatable, stroke survivors conducted domestic skill classes for making steam-buns (pau) and cupcakes. As a symbol of appreciation; stroke patients, survivors and their families were treated to a special tea party to acknowledge, appreciate and celebrate the courage of stroke survivors.

Can you describe the immediate impact of the campaign a) on the public and b) on healthcare professionals and policy makers? 

 The campaign enabled the public and the medical staff to acknowledge the courage and perseverance of stroke survivors. The Stroke Forum amongst stroke survivors provided valuable insights from the patients’ perspective and also contributed to our continuous service improvement.

A real achievement for our World Stroke Day Campaign celebrations was the attendance of the Director of Medical Development Division in the Ministry of Health at the peak highlight celebration. This event which was also attended by neurologists, geriatricians, internal physicians and allied health professionals from other hospitals increased awareness and action of top government stakeholders and other partners to solidly support the development of stroke rehabilitation provision in Malaysia.

Finally, what does it mean to you to receive an award from the World Stroke Campaign? 

It is a tremendous honour to receive the award from an esteemed and prestigious organization such as WSO. Receiving the award helps to set a benchmark for stroke rehabilitation service in the country. The recognition has served as a driving factor for HRC, and has propelled us to provide better quality service in the future. We look forward to further fruitful partnership with the World Stroke Campaign.

You can find out more about the World Stroke Campaign on our campaign website and be first to hear about new campaigns by following us on Facebook

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/

Seven minutes in stroke - Caterina Breitenstein

1. What inspired you towards neuroscience?

Trained as a clinical psychologist, I have always been fascinated with human behavior, particularly with social interactions. With the emergence of cognitive neuroscience, I wanted to explore the neural basis of successful and unsuccessful verbal and nonverbal interactions.

2. Why stroke?

To me, post-stroke aphasia is one of the most devastating human conditions. Patients frequently appear physically unharmed, but are mentally „locked in“ because of their inability to successfully interact with other humans.

3. What have been the highs so far?

I recently had the privileg to be the local principal investigator of the to-date largest randomised controlled clinical trial (RCT) on the effectiveness of intensive speech and language therapy/SLT in chronic post-stroke aphasisa. The results demonstrated statistical superiority of intensive SLT compared to no or low intensity SLT and have been accepted for publication by the prestigous medical journal The Lancet [http://dx.doi.org/10.1016/S0140-6736(17)30067-3]. I am confident that the results will contribute to improved treatment options for stroke patients with aphasia in the intermediate future.

4. What have been the lows?

Having worked at a neurology department for the past 17 years, I experienced how limited the research devoted to post-stroke aphasia has been in the medical field. Significantly more contributions in terms of publications and grants have been made in the field of physical post-stroke symptoms. The sad consequence has been that access to SLT has become increasingly difficult for stroke patients with aphasia.

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

This is clearly not one of my strenghts. It feels like an ongoing struggle between following my passion for work and spending time with my two lovely children and my husband. So it is actually a constant ‚imbalance‘, one way or the other…

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

As a postdoc, I worked for two years with Diana Van Lancker Sidtis at the University of Southern California in Los Angeles (USA). Diana inspired me to unorthodox ways of thinking in solving ‚the brain puzzle‘ – and taught me that food is of minor importance when you are analysing data from one of your recently completed studies! Stefan Knecht and E. Bernd Ringelstein (formerly Dept. of Neurology, University of Muenster, Germany) shared my passion for language from their neurologists‘ perspectives and were always highly supportive of my scientific projects.

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

The FCET2EC study group designed and realized the above mentioned RCT on SLT effectiveness in chronic aphasia. Without the joint expertise of the group members, the study would have never accomplished. The Collaboration of Aphasia Trialists (CAT) initiative lead by Marian Brady (University of Glasgow, UK) got me involved with aphasisa experts worldwide. In this collaboration, we are currently aiming to develop international core outcome sets (COS) for aphasia research as well as to establish an international registry for routine care aphasia outcome data. I consider both projects to be of outmost importance in the field of aphasia.

Caterina is from the Dept. of General Neurology with Institute for Translational Neurology
University of Muenster, Germany she can be contacted at breitens@uni-muenster.de