Young stroke survivor Nicky Bruno reminds us of the importance of self advocacy

Two years ago Nicky Bruno had a stroke, as a young adult working and coaching in collegiate athletics in the USA, this was absolutely devastating. Here Nicky shares her story and encourages us all to take the initiative in preventing a stroke.

Where were you when you had your stroke? - I had my stroke at my home at the age of 30.

Could you access hospital? - I was in the vicinity of two hospitals (within 30 minutes) of my home. One was a Primary Stroke Center and one was a Comprehensive Stroke Center.  

What expectations did you have for your treatment, rehabilitation and recovery? -  I was diagnosed with a spontaneous vertebral artery dissection, which is a tear that formed in the artery of my neck, that produced a clot which disrupted the flow of blood to my brain. This led to my cerebellar stroke. Following my diagnosis, I expected that there would be more information known about my specific condition and that there would be a set plan for recovery already in place. 

What was your experience of treatment and rehabilitation? - Since my condition is rare, I had to research and visit a young stroke specialist to help me devise a rehabilitation plan. The stroke affected my cerebellum and left me unable to walk, balance, or read. Entering a rehabilitation and nursing facility and then finding an outpatient physical therapy clinic that could help create innovative vestibular exercises was crucial to my recovery.  

What has helped you in your recovery? - Directly following my stroke, I dedicated myself to learning as much as I possibly could about my condition and focused relentlessly on my rehabilitation. Having been an athlete all of my life and a collegiate coach at the time of my stroke, I transferred my focus to retraining my brain. Currently, I have slowly regained my balance and the ability to not only walk on my own but jog again. With time, dedication and practice, I was also able to manage my visual symptoms enough to be able to type, read, and drive. Each day I continue to work to find ways to modify my daily life to fit my new normal.  

What have been/are your fears? - I would have to say my biggest fear was/is sustaining another stroke since mine was spontaneous. 

How did your family and friends feel and respond? -  Following my stroke, I was unable to work or care for myself. Without the help and support of my family and their tireless pursuit to get me the best possible care, I would not be where I am today! 

Do you have a message for our World Stroke Campaign this year?

I firmly believe that it is equally important to be your own advocate when it comes to your health if you are able. This begins with taking the initiative to employ prevention strategies, knowing your individual risk factors, and identifying the various signs and symptoms of a stroke! 

While stroke is typically thought of as something that affects only older individuals, this experience has opened my eyes to the fact that young stroke is more common than we think. I am passionate about advocating for young stroke, and I wanted to reach out in the hope that I can help others! 

Exploring solutions for multimorbidities prevention and control

The Global Coalition for Circulatory Health gathered for a side event around the UN General Assembly this week. WSO Global Policy Chair Prof Bo Norrving contributed to the event - 'Exploring solutions for multi-morbidities prevention and control: the case for circulatory health". Other participants in the panel included David Wood (past WHF President) and Vivekanand Jha (President of the International Society of Nephrology). 

Multi-morbidity, the concept under discussion is core to stroke, heart disease, kidney disease, and vascular diseases, which together form a strong cluster along with hypertension driving premature morbidity and disability globally. Multi morbidity, where patients experience several conditions needs to be recognized as a major prognostic factor on its own right and clinicians and health systems need to be able to respond to multiple needs of patients to reduce mortality, disability and improve quality of life.

While multi-morbidities are expected to increase largely as a result of demographic change, circulatory diseases share many risk factors and show incredible potential for prevention. This potential provides a strong "glue" that binds partner members of the Global Coalition for Circulatory Health in their work towards global health goals. 

Prof Norrving presented recent epidemiological data from Sweden, which demonstrates that incidence of first and recurrent strokes can be substantially decreased with effective intervention on risk factors, providing proof of principle that prevention works. The priority now is to ensure that inequalities in access to preventive and acute care are reduced, so that those countries currently experiencing the greatest increase in stroke and circulatory disease - typically LMICs - can get ahead of the curve on prevention.

Multimorbidity and strengthening of the workforces will be themes for future discussions within the Global Coalition for Circulatory Health, which will have a next next summit in June 2020.

For more on the shared agenda between stroke and circulatory disease download Sustainable Action for Circulatory Health White Paper

Improving stroke prevention and support in Tanzania through primary health care

Joel Samson Ruvugo is a primary health care consultant in Dar es Salaam

Tanzania, here he talks about his commitment to increasing stroke prevention and support through his public health skills and knowledge.

What has inspired you to be involved in stroke support?

For me getting involved in stroke support is both an informed and worthwhile decision. Stroke support, and organisations that provide it, are needed urgently in Tanzania. I feel a responsibility to invest the knowledge and skills that I have gained in my public health work in communities through a cascading approach.

What does stroke support look like in your country?

There are a good number of health facilities in Tanzania that offer cardiovascular disease (CVD) treatment services, including clinical assessment, MRI, CT-SCAN, ECHO, ECG, X-ray, and weight, body and waist mass indexes. However, CVD prevention and post stroke care services for stroke survivors need to be improved in order to ensure long term impact for stroke survivors, family members and the general community.

How did the project come about?

 As a tutor with the People’s Open Access Education Initiative, which partners with EUCLID, I facilitate a topic on NCDs, in particular CVD and diabetes mellitus. In collaboration with different research institutions we provide public health capacity building to health care professionals in low and middle income countries, where the burden of NCDs is growing. I am in close contact with people affected by stroke and we have discussed many issues in regard to the impact of stroke, and family and community needs. I have used this learning and insight to develop my stroke support activities.

What have been some of the outcomes of the project?

There is increasing awareness of stroke and sensitisation of health services to the needs of stroke patients and their carers. They are increasingly accessing available health facilities for stroke assessment and rehabilitation. There are now health and heart clubs in different parts of the country as a result of the project’s stroke management cascading model.

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

The feedback from stroke survivors is that there has to be public health promotion, which promotes healthier lifestyle behaviours and support for the development of approaches that enable behaviour change. I see the need for regular provision of stroke education and health promotion, information systems that best support the stroke strategy, ICT materials and the promotion of widespread and consistent use of patient care guidelines in all settings in the country.

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

The community, doctors and politicians recognise the need to have stroke support organisations that are accessible and reliable, with focal centres and human and financial resources to be able to execute integrated stroke interventions in any given local setting in Tanzania.

  

What would you say to other people to make them take stroke prevention seriously?

Primary health care is key to stroke prevention. There is a need to establish a framework for educating health care professionals to address the social determinants of health in Tanzania. CVDs are silent killers, therefore, individuals, family members and communities must be aware of the impact of CVDs to their health, and risk factors that they can manage.

An inspiring personal testimony about aphasia post stroke

François Grosjean, Professor Emeritus at the University of Neuchâtel, Switzerland, shares a recent interview he undertook with a multilingual aphasic stroke survivor

My interest in aphasia - language and speech impairment due to brain damage most often resulting from a stroke - started many years ago when I was writing my first book on bilingualism, Life with two languages: An introduction to bilingualism. I had a whole section on multilingual aphasic patients and related the many fascinating recovery patterns that have been reported in the literature.

I then collaborated with the Lausanne University Hospital (CHUV) in Switzerland for which my laboratory did a number of projects for their aphasia unit (see here for a list of publications). The most notable project concerned a battery of on-line perception and comprehension tests for aphasic patients.

When I started a blog for Psychology Today a number of years ago, it was only normal that I talk about aphasia in bi- and multilingual patients. A few weeks ago, a colleague in Singapore, Dr. Valerie Lim, told me that she had a multilingual aphasic patient who was willing to be interviewed for my blog. I was thrilled as a personal testimony can be of interest to others recovering from aphasia, their family members and friends, and the general public. It can also be motivating for the person herself who is struggling to recuperate her language(s).

The interview, for which I have already received wonderful feedback ("an amazing and inspiring story", "this interview is fascinating", etc.) can be found here.

Seven minutes in stroke - Dr Xia Wang

Dr Xia Wang in collaboration with Dr Tom Moullaali and Professor Rustam Salman at the University of Edinburgh submitted the article 

‘Who will benefit more from low - dose alteplase in acute ischaemic stroke?’ to the International Journal of Stroke. Dr Wang answered our Seven minutes in stroke giving us a little insight into where our stroke researchers and clinicians began their relationship with stroke.

1. What inspired you towards neuroscience?

Neuroscience is pretty cool! It is one of the last great frontiers of knowledge spanning from molecules, through cells and pathways, all the way up to complex human behaviour. Clever neuroscience tricks have been applied to all the aspects of our lives. For example, Instagram used it in the logo design to appeal to human being’s subconscious minds. The thick white line of the camera on the logo against the rich colourful background creates high levels of eye-catching visual saliency. Designs that are visually salient get looked at earlier, more often, and for longer.

2. Why stroke?

Stroke is the leading cause of death in China, with the country accounting for roughly one third of worldwide stroke mortality. Stroke burden is much higher in northern rural area where I am from. Compared with other parts of China, the prevalence of major risk factors for stroke remains high; the salt intake is much higher; tobacco use is highly prevalent; the awareness rate, treatment rate, and control rate of hypertension and diabetes are low. After stroke, stroke care quality and secondary prevention are all in a very low quality therefore the recurrent stroke rate is higher. Stroke research could help me to understand this area more and helpful to tackle the great challenge in my hometown.

3. What have been the highs so far?

I have produced 20 publications in the last 2 years including in lead international journals – NEJM, Lancet, Lancet Neurology, and JAMA Neurology.  The new knowledge I produced has been recognised by 39 countries across 5 continents of Asia, Europe, North America, South America, and Australia.  It has been adopted by 160 academic institutes/industries and influenced beyond medicine area in other 12 area including Engineering, Agricultural and Biological Sciences, and Computer Science.

The paper I co-authored – from the ENhanced Control of Hypertension And Thrombolysis strokE stuDy (ENCHANTED) – has been cited by multiple clinical practice guidelines including the American Heart Association (AHA)/American Stroke Association (ASA). Australian Commission on Safety and Quality in Health Care found a profound reduction of healthcare cost of ADU $50 million per year through improvements in patient outcomes by applying ENCHANTED findings in Australia (http://apo.org.au/node/100526). I presented a subgroup analysis in the plenary session in European Stroke Conference in Milan in May.

4. What have been the lows?

Pressure from multiple applications including grants and fellowship to do every year, hard feelings from rejections and insecurity of funding.

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

I like cooking and swimming in my spare time, really look forward to hanging out with friends on the weekend.

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

Professor Craig Anderson.

An email attached my resume with emphasis on excellent statistical skills reached Professor Craig Anderson in 2012. Then he decided to offer me an opportunity to be the statistician for INTERACT2, moved me from HIV research to stroke.

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

Collaboration with Dr Tom Moullaali and Professor Rustam Salman at the University of Edinburgh

I co-supervised Dr Tom Moullaali while he was undertaking the visiting scholar at the George Institute Australia in 2016 and 2018. We worked on individual patient data (IPD) meta analysis on blood pressure (BP) lowering treatment for acute intracerebral haemorrhage and the paper has been accepted by Lancet Neurology. Prof Rustam Salman, the supervisor of Dr Tom Moullaali, worked closely with me during his sabbatical leave at the George Institute Australia in 2014. We have co-authored some papers. I have applied an exchange award from the National Heart Foundation, if successful, it would be a great opportunity to visit them and immerse myself in a different research institute environment.