Seven minutes in stroke - Sara Mazzucco

Seven minutes in stroke

1.     What inspired you towards neuroscience?

The mystery of the brain! In the late 90s, as a medical student in my pre-clinical years, I was fascinated by how little we knew about how the brain works. There was so much to discover. When I went on to my clinical training and started seeing patients, I was struck by how different, and special, neurological patients were. I had the feeling that some diseases affecting the brain had the power to build a wall of incommunicability and estrangement between the affected patient and the rest of the world. I wanted to understand what that wall was, and I wanted to be able to knock it down.

1.     Why stroke?

I have always been interested in blood circulation, and of course cerebral circulation is even more fascinating as it is different from the rest of the body. The brain is special even in the way it regulates its own perfusion. From a clinical point of view, cerebrovascular diseases are largely preventable and treatable, and I still feel the enthusiasm of being able to make a difference for each individual patient, helping to prevent strokes or offering acute-phase treatments.  

2.     What have been the highs so far?

Finding a non-invasive tool that allows me a glimpse into cerebral haemodynamics, using ultrasound. This tool is called “Neurosonology”. I discovered it in the late 90s and since then I have started from scratch a neurosonology lab first in Italy (in Verona, where I worked for over 10 years) and now in Oxford, UK.

3.     What have been the lows?

When I started my training, I felt very frustrated by the nihilistic attitude of some colleagues towards strokes patients, especially when compared with the enthusiasm for acute coronary reperfusion and endovascular treatments. Nearly twenty years later, we are finally getting there!

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

Working hard on both sides, and having great colleagues and a very understanding and helpful family.  

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

I am indebted to many generous and clever people, whom I was lucky enough to meet in my professional life.  Among them, the neuroscientist who lead me through the fascination of Neurology was Nicolo’ Rizzuto, head of Neurosciences in Verona University Hospital when I was a medical student and a young doctor, who nurtured and encouraged my interest for stroke and Neurosonology. He also introduced me to Gian Paolo Anzola, who taught me so much, and has always supported me with his advice and practical help.  Peter Rothwell, whom I met during my PhD in Neurosciences when he was just starting the Oxford Vascular study, has always been a guide and reference for me in understanding and treating cerebrovascular diseases. I have moved from Italy to Oxford to be able to work with him, and he is a continuous source of inspiration. And lastly, my father, who is a cardiac surgeon and an academic, to whom I have always turned in my professional life when in doubt, and from whom I suspect I have inherited my interest in haemodynamics.

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

I have always worked with cardiologists, radiologists and vascular surgeons. More recently, I have developed an interest in paediatric stroke and Sickle Cell Disease, and new collaborations with Paediatric haematologists have started. My research has always been very clinically oriented, and collaborations in research have always grown around clinical questions.

sara.mazzucco@ndcn.ox.ac.uk

Stroke Survivor Stories - Youko Yamaguchi

Where were you when the stroke happened?  

My wife, Youko Yamaguchi, was traveling with her friends 17 years ago. While chattering at night club after dinner she got subarachnoid hemorrhage at the age of 53. The hotel manager called ambulance car, and she was carried to an emergence 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 approval sign, the operation took place. 

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.  Without any special rehabilitation, she left the hospital one month later.

What was your experience of treatment and/or rehabilitation?

2 days later after we returned home, my wife was admitted to a rehabilitation hospital cerebrovascular center.  Here physical therapy, occupational therapy and speech therapy began.  She was positive about the physical therapy because it was carried out in a large gym and she could interact with other patients.   But, occupational and speech therapy took place in small private room, and therapists sat down side by side without noticing the appearance of my wife.   They only executed the curriculum without any guidance from their superiors.  During 3 months stay, her 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?

3 months later she moved to another rehabilitation center in Yokohama for 2 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.  The speech therapist also 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 a specific software to our PC, and advised us to write and send a short mail to her about any topics.  A few days later the return mail came back without fail. Video conversation through IPad 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 most serious matter to us.

How did your family and friends feel and respond?  

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 - Sas Freeman

Where were you when you had your stroke?

I am a survivor of two strokes, both at the age of 45. On the morning of my first stoke, I woke with a tremendously strong pain in a small area on the left side of my head. I am no stranger to migraines but it was stronger than a migraine yet in such a small area. 

Could you access hospital?

I told myself it would pass and I could go to work as usual. Time passed and by now I was tripping over, my eye weeping and I was struggling to get my words out as I phoned my doctors for help. Help was not as hoped, the response being 'there is a cancellation if you come now!' I have no idea how I managed this, where I left the car or its keys! 

What was your experience of treatment and/or rehabilitation?

On arrival help was fast and efficient, realising immediately it was a stroke, hospital staff were waiting for me to begin scans etc.

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

I was left with right sided paralysis,loss of  speech, weaker hearing and sight on my right side, my right arm and leg were twisted in and my face dropped, I also was left with cognitive difficulties and huge problems with fatigue, which even now six years on is still the case.

I have fortunately always been an optimistic and determined person, so despite eventually leaving hospital in a wheelchair with the departing message, 'this is as good as it is going to get,' I was not prepared at 45 to live the rest of my life totally dependent on others,

At that stage I had no idea what if anything I could do about it but I had to and would do something. 

What has helped you in your recovery?

I worked using visualisation, trying absolutely anything as I simply had nothing to lose. Eventually little by little, I began to make very small but some improvements. I did not ever let go of my positive mental attitude even in the very low times, and there were many.

This drove me to write my book, ‘Two Strokes Not Out’ to help fellow survivors through these difficult and lonely times and also their families who have also been thrown into this devastating mess without warning. The child forced to become carer, yet at school they return to child role. The book's intention is to be a companion and personal reference guide to the survivor and a support to their families. It is a long and lonely road.

How did your family and friends feel and respond?

Stroke changed our lives as a family forever, overnight, taking away my mobility, independence and ability to work. It left me having to rely on others to eat, wash and dress simply to do everything for me for a great deal of time,

My most recent and exciting task will be revealed on World Stroke Day, Take a look on my website www.sasfreeman.com and Sign Against Stroke website www.signagainststroke.com

Wishing all survivors a good recovery, from someone who understands,

A Fellow Survivor and Mentor, Sas

Stroke supporters around the world - Janet E. Marshman

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 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

Janet E. Marshman RN, Stroke Coordinator, Virginia USA

What has inspired you to be involved in stroke support/stroke awareness?

      Nursing, is a profession of diversity. You may not think about it in this way, but it provides many adventures in healthcare. That is how I got involved with stroke support. I initially was hired as a nurse to do data abstraction for stroke measures, and two weeks after I was in this role, my hospital asked me to lead the project of primary stroke certification. Part of these responsibilities included community stroke awareness and education.

      How did the project come about?

      I have always had an interest in integration of arts with healing. I asked myself, “How can I create a profound community experience integrating art, stroke survivors and their care partner?” Being that I am an artist myself, I had connections with artists. What if I had artists have a conversation with stroke survivors and their care partners about what it is like to live with a stroke and then the artist would create an art piece from that conversation? So I invited artists and stroke survivors to be part of the project, curating two shows with artworks completed by the artist’s interpreting  living with stroke.

      What does stroke support look like in your country? 

      The American Stroke Association and the National Stroke Association are the foundation for professionals and those who have experienced stroke. Comprehensive Stroke Centers and Primary Stroke Centers are key to the stroke care provided in the United States. This project was recognized by the American Stroke Association.

      What have been the highs so far for your project?

      As part of this project I wanted to engage individuals that had lived with stroke a long time and recent strokes. One caregiver shared, “I have been waiting 40 years to tell my story.” At the end of the project when she was picking up the art piece that the artist had given her, she said, “You have no idea how much healing has taken place for me and my family as a result of this project.”

      What have been some of the outcomes of the projects?

      Because this was a different way to create stroke awareness, it provided a new platform to educate the community about stroke. Healing for our stroke community was center stage. It was a format of stroke education and visual experience having a long term impact in the community.

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

      The quote above says it all.

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

      The community embraced this project. I worked with two art galleries in the community to create the shows of 25 artists, which included water color, acrylic paintings, ceramic pieces, mixed media pieces, photography, poet, writer, paper art/Scherenschnitte and charcoal drawing. Some of the works were created by artists who were stroke survivors and who wanted to create an art piece for the show. The stroke survivors and care partners found new friends in the artists, and the artists loved doing something they had never done before. It was a new and novel approach to creating art.

Canadian Stroke Awareness Month Highlights Stroke Experience at All Ages

Our colleagues at Heart and Stroke Foundation Canada are using the month of June to raise awareness and share stories from people of all ages who experience stroke and their families encounter personal triumphs and face common challenges in their recovery.



The majority of people (80%) survive stroke, and as the Canadian population ages and more young people are having strokes, the number of people living with stroke and requiring support will continue to increase. In fact, there are more than 400,000 Canadians living with long-term disability from stroke, and this number will almost double in the next 20 years.


Half of all Canadians living with stroke need help with daily activities such as eating, bathing, dressing, going to the washroom and getting around and more than 40% require more intense support. Yet many needs are not being met. While some excellent resources are available in communities, they are too few and mostly in major centres, and barriers exist around awareness, access and cost.

There are unique challenges in stroke recovery at different ages. Kids brains’ are growing and recovering at the same time, and can face cognitive and behavioural issues. Younger adults encounter issues around: being able to drive again, returning to work or school, raising young families, and long-term finances stress. The average older stroke patient has five other chronic conditions, and many older patients and their caregivers face isolation and depression. Family caregivers play an essential role in stroke recovery yet they rarely receive the preparation and support they need.


The Heart & Stroke 2017 Stroke Report looks at the stroke recovery journey across the ages, highlighting common challenges and issues that occur at specific life stages: babies and children, younger adults and older adults. It examines the essential role of the family caregiver, highlights the importance of placing the patient and family at the centre of care, and identifies areas where system improvements could support the changing profile and needs of people who experience stroke.


The report is available at heartandstroke.ca/strokereport

Powerful new learning tool for stroke professionals

The World Stroke Organization and European Stroke Organisation have joined forces to provide state of the art e-learning portal and powerful portable mobile app. The new World Stoke Academy portal and app provides easy access to e-learning content from the WSO and ESO putting high quality, peer reviewed stroke knowledge in the palm of your hand.

The e-learning platform offers unique access to a wide range of tailored educational resources aimed at improving stroke prevention, treatment and rehabilitation globally. WSO members have free access to all e-learning content, while non-members can still access a wide range of content.

Find out more about WSO membership

A gram of prevention is worth a kilo of cure

A gram of prevention is worth a kilo of cure - reducing the burden of stroke in Europe

By Jon Barrick, President of SAFE and World Stroke Campaign Committee Chair

Over the past two decades Europe has seen a welcome reduction in the proportion of people having a stroke and for those who do experience stroke, their chances of recovering have greatly improved. The continent not only boasts some of the best stroke care in the world but has pioneered important developments in the prevention and treatment of stroke; supports an active stroke research community and has active patient advocacy organisations in almost every country.

It sounds like we’ve got it sorted doesn’t it? I should really be out of a job, but in spite of all this progress we still have a long way to go before people in Europe can expect to receive the same level of care, let alone aspire to the WSO vision of  ‘a life free from stroke’. Across the continent, there is still so much to do to reduce the burden of stroke that any hopes of a quiet retirement walking my dog have been reluctantly set aside.  Despite reduced stroke prevalence figures, overall numbers of stroke are set to increase by 34% by 2035, not only devastating an additional 300,000 lives, but taking the cost to the EU economy far higher than the current estimate of €45bn a year.

As the British saying goes ‘an ounce of prevention is worth a pound of cure’ and regardless of whether you prefer your quantities in metric or imperial, research estimates that over 90% of strokes are associated with 10 modifiable risks. In the context of an ageing population and concomitant increases in health and social care costs, you would expect to see political leaders and health providers doing everything within their power to reduce burden of stroke. And while the vast majority of European countries have indeed developed national guidelines for primary and secondary stroke prevention, in many countries these aren’t comprehensive or universally delivered.

While treating high blood pressure alone would almost halve the number of strokes, hypertension is significantly under-treated across Europe. Research indicates that well below half of the people who are actually being treated for high blood pressure, aren’t on enough medication to bring it to the desired target level anyway.  An abnormal heart rhythm (Atrial Fibrillation or AF), which is associated with a three to five fold risk of stroke and higher stroke related mortality and disability, is also significantly undiagnosed and under-treated.  For almost a quarter of stroke patients a diagnosis of AF only comes after they have had a stroke, despite diagnosis being as simple as taking a pulse. Even after stroke, when the risk is clearly known, AF is still an under-treated condition.

It’s not just in the treatment of underlying conditions that Europe shows room for improvement, from Sweden to Greece and Ireland to Estonia, public awareness of stroke risk factors would also benefit from more focused attention. Across the board, relatively few people are able to correctly identify all significant stroke risk factors and unsurprisingly underestimate their individual risk of stroke. Where is the motivation to listen to stroke prevention messages, let alone change your behaviour, if you don’t think stroke is likely to touch your life? While campaigns and public education initiatives have been implemented across the region - including many that are delivered as part of the World Stroke Campaign - more attention needs to be paid to measuring impact in relation not just to awareness but also to behaviour change.

And going beyond awareness, as my colleagues at WSO have highlighted elsewhere, we need to review some of our basic assumptions about public health interventions to tackle stroke. By implementing population-wide approaches that focus on creating healthier communities through for example, public smoking bans, taxing unhealthy foods, addressing obesogenic environments and tackling air pollution, we have the potential to deliver a double blow to stroke and to a range of diseases that share the same contributing factors. 

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The European Union now has the evidence and the opportunity to show leadership on stroke prevention, delivering solutions that can be learned from in other developed and developing regions of the world. Their first port of call should be the recommendations in SAFE’s Burden of Stroke in Europe Report.

A long hard road to recovery for Mr Anson

    It has taken Mr K Anson nine years to become fully independent after his stroke. Read his story of stroke survival.

 

Where were you when you had your stroke?

I retired at the age of 55 and started a showroom of furniture. Every day, I used to go to the showroom and sell furniture. So the whole week was full of active work which I always loved to be involved in. When I was 56 years, on the morning of 27^th September 2009, I couldn’t get up. But I was apparently well when I went to bed previous night after dinner. Suddenly, I noticed that the right side of my face, my right arm and my right leg were heavy and difficult to move. I could not utter a word. I could not see my right side. There was no control over my bodily functions and I could not swallow a drop of water. 

Could you access hospital?
Fortunately, I was at home and my wife promptly took me to the National hospital of Sri Lanka by 11a.m same day. There I was admitted to the stroke unit and was investigated. Then I was found to have left middle cerebral artery infarction after the CT scan of my brain. 

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

I was conscious, rational and alert but with so much of depression. I felt that my life was not worthy anymore. I was worrying about my little son and my loving wife.  

What was your experience of treatment and/or rehabilitation?

The caregiver was a paid person. But he was very kind and helped me so much. But with the time, I felt that my speech, swallowing and my right side motor functions were gradually improving. Because of the expert stroke team, I didn’t get any complications due to the stroke or a secondary stroke during the period of rehabilitation. As a risk factor, I had only dyslipidaemia which was in a good control by the time I had a stroke. All the relevant investigations were done and lifelong drugs were started to control  high cholesterol and prevent a further stroke. I was given speech therapy, occupational therapy and physiotherapy to a daily schedule. Actually I didn’t have any expectations when I entered the stroke unit. But day by day I had been gathering more and more expectations to get my usual life back as early as possible.

What has helped you in your recovery?

It was not very easy despite all the services I was provided with. For that, I have been waiting for long nine years to fulfil my expectations. Now, I can do my day to day activities alone. I am totally independent now. But my right side motor disability and my speech are not completely recovered, whereas my swallowing, vision and continence are completely normal. But still I have hopes to reverse these residual disabilities back to normal in future.   

                           

What have been/are your fears?

The only fear that I had in my mind was to live like a disabled forever.

How did your family and friends feel and respond?

My wife is a housewife who looks after me very well. My wife and son used to visit me daily. My friends who were working with me in the Postal Department came several times and shared my sorrow.

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

Stroke survivor stories - Mr Nishantha

Mr Nishantha was only 29 and about to become a father for the first time when he had a stroke. Read his story here:

Where were you when you had your stroke?  

I am 29 years old. I got married one year ago, and my wife is expecting. On 21^st January 2017, I attended the funeral of my friend and came back home around 3 am the following day. Soon after, I entered the bathroom and had a quick wash. I remembered that I came out of the bathroom. After that, I could not remember anything that happened. I could remember things only 20 days after the incident. 

Could you access hospital?

I was found fallen on the floor by my wife with weakened right side of my body. Although she was pregnant she had managed to admit me to the nearest hospital as soon as possible. The local hospital authority had decided to transfer me to the National Hospital of Sri Lanka in Colombo. So the same day, I was admitted to a neuro-surgical ward in the National Hospital and I was investigated. I was found to have bleeding in the left brain by a CT scan of the brain and transferred to a neurology ward on the following day without any surgical intervention.

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

Three days later, I was transferred to the stroke unit for rehabilitation. By that time, I was conscious, but not alert and rational. I was aphasic, couldn’t move my right side of the body including my right side of the face, couldn’t swallow, couldn’t see my right side and had incontinence. I was looked after and given the care by my own brother, around February 11^th I could remember things and I was alert as well as rational.

What was your experience of treatment and/or rehabilitation?

The stroke team is very specialised, giving multi-disciplinary tasks with targets on a daily basis. The head of the team is a senior consultant neurologist, who leads other doctors, nurses, therapists, counsellors and social service officers. As I was a young hypertensive and a young stroke survivor, I was investigated thoroughly. By the time I had the stroke, I was suffering from high blood pressure, diabetes and  high cholesterol.

What has helped you in your recovery?

I was asked to continue drugs to prevent a secondary stroke and to control risk factors. I was advised to continue speech therapy, occupational therapy and physiotherapy regularly. I was fed through a nasogastric tube and there was a urinary catheter inserted.

What have been/are your fears?

I was shocked by hearing the tragedy I had gone through. I had spent my all fearful days unaware. So beyond that I didn’t have any fears but expectations to get rid of the disabilities quickly. The most troublesome disability was the communication difficulty. I could understand what I was told but I couldn’t express my feelings as they were (expressive dysphasia).

How did your family and friends feel and respond?

My wife, my parents and my brother were around me to give the maximum care. After one month and 10 days of hospital stay, I was able to walk out of the hospital without support with restored good communication skills, normal swallowing, right side vision and good continence.

I would like to thank everybody that helped me to survive from the dreadful stroke. Now I expect to go to work as early as possible. May the triple gem bless them all!!

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