Thursday, April 27, 2017

Stroke survivor stories - Shriram Varadharajan, India

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 in my first year of medical school (Jan 2004, 17 years of
age) trying to distract myself ahead of an internal test the next
day for which I was under prepared. My brother was playing a
computer game and I was standing behind him watching the
screen when suddenly I had an awful sensation on my 
right side, feeling weak and I could not balance myself. 
I eventually fell and wanted to shout for help but could 
only mumble incomprehensible words. My mom rushed to 
my side and found my mouth deviated to one side. We 
quickly realized this was serious and I was taken to my family
physician who recognized this as stroke and directed me to nearest hospital.

Could you access hospital?
I was taken to the emergency services of a tertiary care hospital within a couple of
hours. The neurologist was consulted and imaging was done (initial CT which was
normal and subsequent MRI scan which revealed infarct (area of irreversible damage)
in my left brain which controlled my right side.

What expectations did you have for your treatment, rehabilitation, recovery?
Even though I was in medical school, it was my first year and I had very little idea
about what a stroke meant. However, the feeling of feeling powerless, unable to use
one side of your body was overwhelming and frightening. My treatment was based on
imaging studies and I was put on medications to prevent further clotting of blood.
Miraculously most of my power (ability to use my weakened side) returned within a few
hours and my speech improved as well.

What was your experience of treatment and rehabilitation?
My treatment in hospital continued for the next 2 weeks and I underwent a battery of
tests to find out the cause of the stroke. I was also put on multiple medications to
prevent a secondary stroke (subsequent attacks). I did not require much rehabilitation
since my muscle strength had mostly recovered.

What has helped you in your recovery?
I realized that the only thing that helped me was the awareness to recognise that
something was seriously wrong and to seek medical aid within time.

What have been/are your fears?
My biggest fear initially was that I could suffer another stroke. It was so severe for the
first 6 months or so that I needed to consult my family physician every other day for
minor unrelated complaints. I realized later that it was post-traumatic stress reaction to
my initial stroke.

How did your family and friends feel and respond?

My family (parents, brother and now my wife who is my batch mate in medical school
and fully understands my medical history) have been and continue to be my biggest
strength. They gave me confidence to pursue my life to its fullest. I felt that it (my
stroke) was my calling in life and hence I have always been trying to work in the field
of stroke to help other patients. Currently I have finished my higher specialization in
neuroimaging and interventional neuroradiology and continue to pursue my passion.

Thursday, April 20, 2017

Stroke survivor stories: Kara Russo, USA

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 in the hospital, I was having a medical procedure and I was 27 years old. I remember talking to the doctor ahead of time who said I had a less than 1% chance of having a stroke. A massive bleed was caused. When I awoke I was having headaches, dizziness and vomiting. After discharge I went for another appointment at a different hospital and I was not able to sit up and had severe pain. I was taken to the emergency room. I was told my symptoms were because I was nervous. Nurses fought for me but I was sent home and it was considered symptomatic – ‘you’re young, you’re fine’.

Could you access hospital?
I went to two further emergency rooms before I got admitted, which was only actually because I was dehydrated. This was three days after the initial procedure. The neurologist on call said I was fine, but the doctor insisted on doing a CT scan. They saw that I had had a stroke and the extent of the bleed. I was discharged home after a week. I was not referred to the adjacent rehabilitation unit.

What expectations did you have for your treatment, rehabilitation, recovery?
I was told I would have speech therapy, physical therapy and occupational therapy. I was informed that I wouldn’t have these people coming to my home, but as I had parents, they would need to take me to therapy five times a week. I thought I would have a discharge plan or case manager to help with my recovery but I didn’t get anything. I was a young independent woman and suddenly boom, my life changed.

What was your experience of treatment and/or rehabilitation?
I had to raise the questions, this might have been because I am a nurse so knew what questions needed to be answered. I had to discover for myself what my rehabilitation should look like. If I needed equipment I was advised to look in the catalogue that I had been given to see what would work for me. I am not sure what happened in my case – whether I fell through the cracks.

What has helped you in your recovery?
I had a lot of friends who were nurses and they were trying to find out what support I could have. I went to a support group but they were at different points in their life. Friends and the practical support they offered about financial support, and which therapists would be a good idea, really helped me.

What have been/are your fears?
Not knowing what to expect and initially being told that I would be fine, but how I work, think and go out socially is very different now.

How did your family and friends feel and respond?
I did experience people disappearing because they did not know what to say and do. My parents have been fantastic. My two brothers along with my parents were supportive.  I always knew they were in my corner by either calling or visiting me.  It's amazing what a boost a call can make.Friends who I had not been so close to just stepped up and were amazing. I was very lucky, I had a strong support system.There was always a call or letter when I most needed it, and that was key. 

What has inspired you to be involved in stroke support?
When I was thinking about going back to work as a nurse, I was really conflicted, how could I go back into a system that I think failed me? And I realised it was my opportunity to connect the two worlds of patient and medical system. Then I heard about Amy Edmunds and YoungStroke and I saw what my role was. This has helped me be a better person and a nurse. You need to be your own advocate – and have someone with you.

How have you got involved in the World Stroke Campaign?
I was fortunate enough to be invited to participate in an advocacy workshop at the World Stroke Congress in India in 2016.  This was my first real taste of stroke advocacy.  It was absolutely fascinating to hear how stroke is treated differently across the globe.  Before the workshop I had so many different ideas about how to change and improve the care around stroke.  Some realistic, some not so realistic.  The workshop taught me how to fine tune these ideas and has provided me with detailed guidance that would help me along each step of the advocacy process.  Hopefully I'll see some realistic results!  I'm currently working to create an event in California to celebrate World Stroke Day in October.  In particular we are focusing on young stroke survivors and the changing face of stroke.  

Read more about Kara's story in her book: https://www.amazon.com/But-You-Look-So-Normal/dp/1457520753
You can also find her on Facebook: @ButYouLookSoNormal and Instagram: but_you_look_so_normal

Find out more about YoungStroke at http://youngstroke.org/

Wednesday, April 19, 2017

Saturday, April 8, 2017

World Health Day #depression #letstalk #WSO

Every year, about 16 million people worldwide have a first ever stroke. Of this population, about 5 -7 million people die. Among the survivors, depression occurs in approximately 1/3.  The pathophysiology of post-stroke depression (PSD) is poorly understood; proposed mechanisms include psychological responses to functional disability, social mal-adaptation, genetic susceptibility and alterations in neurotransmitter due to brain damage. Important predictors of PSD include physical disability, depression before stroke, and cognitive impairment. Individuals with PSD have higher healthcare use, poorer functional outcomes and quality of life, and higher mortality. Pharmaceutical treatment (selective serotonin-reuptake inhibitors or tricyclic antidepressants), psychosocial intervention, and, preferably, both are helpful in improving patients’ depressive symptoms. 
Considering the high prevalence of PSD, its negative impact on patients’ outcome, and treatability of this problem, medical personnel should be aware of the PSD, and should promptly screen depressive symptoms and apply evidence-based management.  Unfortunately, PSD has been underrecognized, underinvestigated, and undertreated. 

One of the missions of WSO is to educate health care personnel in every corner of the world this important problem and help them to facilitate research so that we can more clearly understand the pathophysiology of PSD and determine optimal strategies to prevent and treat this condition. 

Jong SKim, on behalf of WSO and Associate Editor for the International Journal of Stroke 

Thursday, April 6, 2017

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. 


Tuesday, April 4, 2017

World Stroke Organization welcomes WHO decision on stroke classification




After sixty-two years of officially categorizing stroke as a Disease of the Circulatory System, WHO has taken the major step of recognizing stroke as a Disease of the Nervous System. The decision has been warmly welcomed by the World Stroke Organization, which has actively advocated for the change, arguing that correct classification is fundamental to global efforts to address the massive challenge of stroke. The change will be reflected in ICD11 the latest document to provide the basis for classifying and monitoring diseases globally. The ICD 11 is expected to be adopted by the World Health Assembly and released in 2018

To find out why the WSO has made it a priority to achieve this change, we talked to Bo Norrving, Chair of the organization’s Global Policy Committee. Bo has also been chair of the Cerebrovascular Diseases group for the ICD 11 and is a member of the WHO Neurology Topical Advisory Group, chaired by Raad Shakir.

Why does it really matter that stroke is classified as a brain disease, not a disease of the circulatory system – aren’t the two closely related?

It’s true that there are close links between cardiovascular disease and stroke; many risk factors are shared and primary prevention will target both disorders jointly.  But the simple fact is that when strokes happen, they happen in the brain.

Delivering stroke treatment early and efficiently with effective acute therapies such as thrombolytic therapy and thrombectomy, depends on the early recognition of symptoms from the brain and early actions to call an ambulance. This is why many countries campaign to increase public knowledge of stroke symptoms (like the FAST campaign) have been conducted in recognition that ‘time is brain’. Similarly, providing early treatment of transient ischemic attacks (TIAs), which are linked to stroke, depend on public knowledge of the symptoms and rapid admittance to hospital.

The impact of delivering effective treatment for acute stroke and the opportunity to prevent a stroke where someone has had a TIA are huge and opportunities should not be missed. Understanding the role of the brain in residual symptoms and disabilities from stroke is also important to providing patients with effective long-term rehabilitation and support.  

Having had stroke under diseases of the circulatory system has put stroke in the shadows regarding the essential recognition of the brain symptoms of stroke as a crucial element in delivering effective therapies.  We are delighted that this is no longer the case.

How do you think this change will help with the achievement the global goal to reduce avoidable deaths from stroke? 

Stroke is the second biggest killer and the largest single cause of disability worldwide and yet still struggles to get the policy attention and resources commensurate with its global impact. Identifying stroke as a disease of the brain and pulling all types of cerebro-vascular diseases into a single block in the ICD 11 will, we believe, guide policy attention
to the right place and enable us to develop 21st Century services for stroke. Stroke is probably the best example there is of a non-communicable disease that is highly preventable and highly treatable, more so than almost any other NCD. With the right focus and commitment to stroke we can make a massive impact on the achievement of sustainable development goals for health.

Ø  Visit the World Stroke Organization website for more information about our work and our members
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Ø  Visit the World Stroke Campaign website for information about the global campaign for better stroke prevention, treatment and support

April 4 2017

Monday, April 3, 2017

Improving stroke treatment in Israel: from public awareness to political action


How Neeman Stroke Survivors campaigned to improve stroke treatment and outcomes




1. What are the key issues around stroke treatment in Israel? 

Key issues in Israel are lack of public awareness of risk factors and early warning signs of an oncoming stroke to ensure speedy arrival by ambulance to emergency stroke care. We also have an absence of stroke units in many areas throughout the country, developing more comprehensive access to these units would help us to deliver maximal medical care in the shortest possible time. Within stroke care centres we also have insufficient trained professionals to perform catheterization – a procedure that can remove blood clots and make a big difference to patient recovery. At present there are today only 8 specialists in Israel, which is a completely inadequate number to fulfil the needs of a population over 8 million. Once patients are out of acute care, we also have a lack of rehabilitation centers and rehabilitation beds and not enough professionally trained allied health rehabilitation personnel.

 2. Why did you choose this particular approach to raise awareness of the treatment needs of people having a stroke? 

Our strategy was to operate in two parallel directions: one was by using various media, especially a TV campaign with a large budget to influence the public, and the other was to influence decision-makers in the Ministry of Health, including the Health Minister and senior echelon from his office, by publicly signing the Israeli National Stroke Policy Declaration for Lowering Stroke Morbidity, at a large, official event. This two-pronged, multi media coverage was expected to draw interest of the public to stroke in general and to the feasibility of identifying early signs as well as influencing key decision-makers to fund the national program for long term, ongoing stroke treatment.

3. What were the most successful parts of the campaign? 

The integration between the various activities worked particularly well. We were able to generate a highly successful, generously funded film sponsored by the Health Ministry, which went viral, as well becoming as the subject of talk shows and popular news columns. The National Conference was attended by top level professionals from the fields of stroke prevention, treatment and rehabilitation, including the acting president of the WSO (by video) and in person participation of the president elect of the WSO. Our end result - a commitment was gained from the Minister of Health to continue in the future to prevent stroke and thus ensure this would not be a temporary campaign.

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

In the first stage we know of an increased number of persons who came to emergency care with early signs of a stroke and whose lives were saved. In addition, we received moving phone calls from the families who personally wished to thank us for saving their relatives from stroke. The many requests from the media for interviews from stroke survivors and Neeman representatives, together with increased utilization of social media all displayed a significant increase of public awareness to early signs of a stroke. In addition, the Health Ministry decided to set up a special working team to identify the issues involved in rehabilitating survivors of stroke and to submit recommendations, a subject that has been neglected up until now.

 5. What does it mean to you to receive an award from the World Stroke Campaign? 

It's a feeling of great satisfaction from the esteem granted to our persistent efforts over 20 years and the recognition of the effectiveness of the selected strategy chosen in our course of action. Winning the award also raises the prestige of the activities of NGOs in health care in general and particularly those which represent stroke survivors and their families, as well the many professional advisors and colleagues who assisted us. It is indeed a great honor!

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