Kavita Basi shares her inspiring story of stroke recovery

In March 2015 at the age of  38, Kavita Basi suffered a subarachnoid brain haemorrhage, a life-threatening type of stroke caused by bleeding on the surface of the brain. Here Kavita shares her story to continue to raise awareness of stroke. 

I was taken into the accident and emergency wing of the hospital on 17 March, 2015, with a life-threatening subarachnoid haemorrhage. I was only thirty-eight years old and had always been a healthy person. I was successful, career-oriented, and travelled the world while working too many hours with no time to relax and think. Then, one night, I suddenly became extremely ill, and my whole world fell apart. I was in the hospital for nearly two months, and after four intense brain surgeries, I had difficulty understanding what was happening to me and why.

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

I didn’t understand what had happened to me therefore I was not in the right frame of mind to be able to have any expectations , also considering that this had never happened to me before it was all a new experience. However I was given very basic detail on how my recovery would progress and didn’t find this helpful.

What was your experience of treatment and/or rehabilitation?

My journey to recovery has been challenging, my perspective has drastically changed, as I now see the important things in life I had to relearn how to do the simplest tasks, like climbing stairs, re-tuning noises due to losing some sense of hearing, severe constant headaches as a result of watching any TV, leaning how to use my mobile devices without having motion sickness. My personality changed, and I was left with short term memory loss, intense mood swings, an emotional state of mind, being very direct when talking, having the black and white thinking and losing that middle ground of understanding. This new life also had a major effect on my relationships, family, and view of work.

What has helped you in your recovery?

• Starting my own blog and youtube channel
• Writing a diary to get my emotions out and help with memory loss
• Tools on mobile device like notes and sharing calendars have helped with memory loss
• Therapy at the priory – with confidence and understanding
• Neuropsychology – which I still attend helped with other tools to adapt to give me a more normal life
• Neuropsychology for my family – this has helped my relationships as they now understand
• Talking to others – by joining health unlocked forum
• Walking – daily to help my high anxiety and keep my focus and fitness
• Diet – eating healthier to keep my fitness
• Not going to loud places – it hurts my head and ears when I’m tired.

What have been/are your fears?

That it will happen again

How did your family and friends feel and respond?

Its been very difficult for my family to understand this just as much as me and maybe even more difficult for them as they have not experienced the daily challenges. By making some of them go to talks from charities or neuropsychology with me has really helped them to understand better. 

My social circle has changed as a result of lack of understanding.

How and why have you got involved in stroke awareness and advocacy?

I have got involved since I came out of hospital because I felt so alone in my early days of recovery and didn’t want anyone else to feel the same which is why I started to get so involved in helping others. So I started my blog, website www.kavitabasi.com and then I wrote my book Room 23 Surviving a Brain Haemorrhage.

Seven Minutes in Stroke - Benjamn T. King

Dr Benjamin King from  the Department of Neurology, Dell Medical School and the University of Texas submitting author of the manuscript 'Optimal Delay Time to Initiate Anticoagulation after Ischemic Stroke in Atrial Fibrillation (START): methodology of a pragmatic, response-adaptive, prospective randomized clinical trial.' published in the International Journal of Stroke. 

1.      What inspired you towards neuroscience?

Unsurprisingly, I came to the field of neuro-epidemiology in a roundabout way, but the neurosciences were always a focus. My undergraduate program at Bard College provided the opportunity to partner with a team building a zebrafish neuroscience lab from the ground up. I was thrilled by my time studying the mechanism of addiction in this model, but I was also determined to move on to human subjects research. From there I went to work at inpatient psychiatric care facilities for a while, but never left the mind/brain question behind.

2. Why stroke?
As we all know, stroke results in a massive amount of disability and death. Public health training recognizes the benefits of addressing the largest drivers of disease burden such as this. Moving the needle even slightly in the prevention, care, or recovery from stroke can lead to inflated population health benefits. I was developing and managing research in emergency medicine when our first acute ischemic stroke trial came along.  It didn’t take long before that became our focus.

I'm lucky to really love the work I do

3.      What have been the highs so far?

I’m lucky to really love the work I do. There is something special that happens when a completely new research question gets introduced – usually when one of my clinician partners kicks down my door out of the blue – and we get to start solving a design question from scratch. There is also a great feeling when you get to see the work you do as an epidemiologist lead to changes in service delivery.  Add to that any and every time I get to take a crack at a clean dataset …and there are too many highs to count.

4. What have been the lows?
Peer-reviewed rejections of grant proposals never seem to get easier.  I’m proud of our wins, but I’m still learning to shake off the losses.

5. How do you balance work life with the needs of home life?
My wife and I both work long hours. She has a background in social work, from before her law career, and does a good job of reminding both of us about the importance of self-care. Setting aside time for ourselves is key. It requires hard work at both ends of the spectrum.

6. Who are your most important mentors and how did you find them?
Dr. Truman Milling hired me to build the Emergency Medicine research program in Austin and we have been working and writing together ever since. It is a truly rare thing to find a clinician with his gift for writing and the technical aspects of research design. When Dr. Steven Warach relocated to Austin from his position as the head of intramural research at NINDS our team leapt at the chance to manage his research program. I have been benefiting from his leadership ever since.  His perspective and insights have literally helped to shape the modern era of vascular neurology practice.

Finally, my epidemiologic training was mentored by some of the greatest methodologists in both epidemiology and biostatistics. My doctoral advisor, Dr. Steven Kelder, has shown me over and over that the field of epidemiology can be used to enact real, systemic changes by studying and testing solutions to complex problems. I first met Dr. Kelder during the master’s program, when I walked into his office unannounced and asked for a job… over a decade before asking him to be my advisor.

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

As an epidemiologist I get to work in and around a lot of different specialties. One of my favorite endeavors is the collaboration built to connect our work in the tertiary care setting with housing and homelessness service agencies in our local community. In fact, my dissertation was a deep dive into the psychometric and validation testing of a popular vulnerability score measure used for housing resource prioritization. Honorable mentions go to our collaborators in the Lone Star Stroke Consortium, my partners in the Dell Medical School’s Department of Population Health and the Division of Psychology.

Seven minutes in stroke - Tomohiro Kawano

Dr. Tomohiro Kawano, is from the

Department of Neurology, Osaka University Graduate School of Medicine

1. What inspired you towards neuroscience?

When I was a medical student my interest in neuroscience was sparked by Professor Mitsuhiro Osame, from Kagoshima University, Japan. He is not only a great scientist and clinician but also remarkable educator. He often encouraged us by saying “In neurological diseases, there are often some limitations for treatment even after definitive diagnosis. Thereafter, there are so many things to elucidate. Neurologist never give up.” 

2. Why stroke?

When I trained as a resident, I was very impressed by successful Intravenous thrombolysis in patients with acute stroke. On the other hand, I was so discouraged by neurological worsening during hospitalization or insufficient functional recovery in stroke survivors. Based on these experiences, I made up my mind to eradicate stroke!

3. What have been the highs so far?

Dramatic recovery following successful recanalization of occluded artery always makes me happy. These days, I am working on basic research in PhD course Osaka University in Japan. When I obtained good experimental results as expected, I feel great.

4. What have been the lows?

There are two cases: in one case, experiments do not work well. In another case, paper is rejected. 

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

I think it is probably difficult for many physicians to maintain a work-life balance besides clinical work. I always try to complete work during the daytime as much as possible. However, I often go back to the lab to put myself to complete unfinished work until midnight after my children fall asleep.

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

I am very lucky to have met good mentors in my professional life. Among them, Dr Munehisa Shimamura, associate professor in Osaka University, is not only a supervisor of my PhD course, but also the most important mentor. He works incredibly hard and shows me what the physician-scientist should be.

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

Working in National Cerebral and Cardiovascular Center, located in Osaka, Japan, gave me a good network among vascular neurologist who came from all over Japan. Thanks to this network with my colleagues, I could publish a paper in Int J Stroke [https://doi.org/10.1177/1747493016677982].

Currently, I have had the pleasure to collaborate with many excellent clinicians and scientists in Osaka University. Our recent research project is development of antithrombotic vaccine for prevention of ischemic stroke in mice toward clinical applications. We hope to provide this unique vaccination as a more effective treatment on the clinical scene in the future.

Get informed about stroke prevention, as stroke can happen to anyone at any age!

At age 51, Mike Williams began experiencing a headache and dizziness while at his home. 

He passed out and woke to remember being put into an ambulance.  At the time, he had no idea he was having a stroke.  

His wife, who was home with him, called for medical attention.  Neither one of them knew just how much their lives would change following that day.  In the days leading up to his stroke, Mike worked 12 hour shifts and spent most of his free time tinkering with his truck, riding his four-wheeler, and doing yard work.  He loved the outdoors, but now has to spend most of his time inside.  He had significant difficulty with his speech following the stroke, and still often experiences dizziness.  Mike's daily activities were hindered by the deficits found in his feet and hands, and continue to hinder him by his fear of falling due to his inability to walk straight.  

The most significant loss according to Mike is his balance.  He rarely went anywhere alone, and quickly became dependent on his wife who quit her job to become his caregiver.  Initially, Mike was reluctant to see his friends and co-workers.  He didn't want to talk to others, as he felt "they could not understand him."  He recalls his best friend continued to be there for he and his wife, despite his reluctance to be seen.  This friend also offered respite for his wife, which provided her opportunities of relief from the daily tasks and stressors of being a caregiver.  Mike's stroke also greatly affected his daughters, his mother and his sister.  

Despite the impacts, Mike says their relationships have survived this obstacle and have grown even stronger from it.  Mike is able to positively reflect on how this experience has strengthened his relationship with his wife too; he shares that it has opened doors of communication for them.  Prior to his stroke, Mike had not known of any other individuals around him having strokes.  He had high blood pressure, but was unaware of how this could increase his risk for stroke.  

During his recovery, Mike was determined to learn more about stroke and prevention.  He was provided information from the rehabilitation center where he received treatment.  He reports paying more attention to signs from his body now, such as not ignoring headaches.  To continue his prevention methods, Mike is seen regularly by doctors and encourages others to do the same.  He also encourages others to inform themselves about stroke, warning signs, and prevention methods specific to them, as stroke can happen to anyone at any age!

Picture credit: Paul Olsen 
Story source: http://youngstroke.org/

Always believe when something doesn't feel right as "...life can change in a second"

Battling medical issues since birth, Meredith Harper and her family knew of general health

risks, but always believed strokes to only impact the elderly population. 

Meredith was a pre-med student who had completed an internship and given presentations on heart and stroke health.  She has always had a gift for helping and caring for others, and even wrote a short book for stroke survivors which included information and exercises for recovery.  

At the shocking age of 22, Meredith experienced her first stroke.  She had been in the emergency room four times prior to this day with Transient Ischemic Attacks (TIA), but the medical professionals dismissed further concern due to her young age.  Her first stroke was brought on by a clot after experiencing arrhythmia.  Meredith experienced this stroke while she was home from college on Christmas Break; fortunately she was with family who knew what was happening and brought her to the hospital immediately.  Meredith reported feeling as if her head was swollen prior to this, and was unable to speak when the stroke occurred.  She had major weakness on the right side of her body, and displayed drooping in her face.  

Due to the significant impact the stroke had on her, Meredith's "life changed drastically."  For the second time in her life, Meredith had to learn how to read, write, walk and talk again.  She was no longer the athlete she had poured much of her time and energy into during previous years of her life.  Some of her friends and family members even had difficulty handling the ways in which the stroke changed Meredith's life.  According to her mother, who became her main caregiver, Meredith faced this incident as she had with other challenges in her life: she didn't let it hold her back.  Her mother remembers, "she was determined to get better as fast as possible."  She had new limits to accept, but Meredith was able to defy the odds and went back to school to graduate just two years later!  

Decision making and task completion often took her longer than they used to, and she was unable to return to some of her favourite activities, but her positivity and determination pushed her along the path of recovery.  She was overseen by a stroke team following the incident, and knew to be mindful of any changes in her body which didn't seem right.  Family members were Meredith's best advocates, and they stress the importance of pushing doctors and other medical staff by asking questions to become as knowledgeable as possible.  They recall how difficult it was to obtain information related to stroke in young individuals, and reflect on how lives can be saved by spreading awareness.  

The best advice Meredith and her family pass along to others is to always believe when something doesn't feel right, and to never take anything for granted, as they have learned firsthand "...life can change in a second."

Picture credit: Paul Olsen 
Story source: http://youngstroke.org/

My reason for preventing stroke? My family of course. Everything else can be replaced.

Ifigenia Tsolakidou is a stroke survivor and member of HAS - the Greek Stroke Association. Here she describes how life has changed since stroke and the steps she takes to reduce her risk and that of her family.

My reason for preventing stroke? Spending an hour a day to take care of your health could prevent years of disease.

Jasmine Cvetkoska is 49 and from Ohrid  Macedonia. Surviving heart surgery didn't slow her down, but not recognising the risk factors of stroke that came with her condition contributed to a life changing stroke. Here she describes the impact on her life and why we should all slow down and take better care of ourselves.

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 - 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