Jean Roger Munezero is motivated to engage in NCD advocacy following his stroke

Jean Roger Munezero is 30 years old and from Rwanda. Jean had a stroke in 2015  whilst studying in South Africa, here he shares his story.

 

Where were you when you had your stroke?
I was in South Africa, I was at the University of South Africa and I was an undergraduate student in International  Relations and Diplomacy.

Could you access a hospital?
Yes of course. I was near the Steve Biko Hospital, about 1 km.I was staying in Pretoria.

What expectations did you have for your treatment, rehabilitation and recovery?
First I didn't know that I had a stroke.At the time I entered the hospital I was in a coma and the doctors told my next of kin that I will spend the whole month in a coma. Luckily I woke up the next day around 1 pm. Being in a country where they can diagnose your illness  is a very big deal in Africa. I was like "you are fine son, they will do their best don't worry." I was satisfied with the treatment they gave me. For my therapy and recovery; since I was there alone, they suggested that I should go back home in order to be with family and caregivers, so they can help me in those steps. As I am talking to you now, I am positive and the recovery is going great.

What has help you in your recovery?
Since I was a child,a positive mind was my first take, I was helped with my attitude within life, " Stay positive and everything will go smoothly."

What have been/are your fears?
I was afraid that I wouldn't manage my studies and outside life...like having  children, will I ever be the man that my partner expects me to be?

How did your family and friends feel and respond?
My family was shocked.I am lucky because my parents went to school, they knew about stroke but still they could ask why God is doing such things to me. They were very supportive and still now they are, as for my friends they could not understand  the reason why am I sick. They are supportive and they are encouraging.

What is the level of stroke support in your Country?
The level of stroke support is still low because of  a shortage of qualified personnel to provide acurate care.

What has motivated you to be involved in stroke support?
First of all I am a human being.I found myself in this situation, then I said with the level of poverty we have in this country, I have to do something like advocate for people who have a noncommunicable disease in my country.

Larry's experience shows us that we can never be complacent about preventing strokes

Larry White, a Chronic Disease Manager for the South Carolina Department of Health and

Environmental Health, was teaching a program named "Power to End Stroke" and felt very knowledgeable on the subject at the time of his Transient Ischemic Attack (TIA).

His father had passed from strokes, and his grandmother suffered from heart disease.  He knew about strokes from several different perspectives, and he knew he was at risk as far as his family history was concerned.  His first hand experience taught him more than he had ever learned though.  

He remembers missing signs from the day before he had the TIA, and even didn't take the symptoms he experienced seriously, as he now realizes he should have.  Larry was driving when this began, and he realized he was unable to stop his vehicle at a red light.  He utilized his other foot to do so, and knew he needed to call the doctor.  Ignoring the recording "If this is an emergency, hang up and call 911" on the answering machine of the doctor's office, he left a message and carried on with his day.  

Carrying on with his day included going to work meetings and "doing everything the doc asked me not to do" before driving himself to the hospital.  In fact, Larry says he wouldn't have paid any further attention to the symptoms had his doctor not instructed him to go to the emergency room.  This was because while he knew something was wrong, he did not realize he was experiencing stroke symptoms.  He was hospitalized for three days for a TIA.  

After returning home from the hospital, Larry was out of work for a few days but was then able to return to everything he was doing prior to this attack.  This included his career as a Chronic Disease Manager, and engulfing himself as an advocate for several causes around his community.  Larry reports being in good health overall prior to the TIA, and attended routine doctor visits.  He now continues a healthy lifestyle by maintaining a healthy diet and walking twice daily, and he does not hesitate to go to his doctor when he feels uneasy.  Using his "real life testimony" to his advantage, Larry finds his audiences are more engaged in his training sessions.  

As someone who has devoted his life to supporting others in his community, he is happy to hear individuals share their experiences or those of family members so openly with him.  In reflecting on his knowledge of stroke prior to his own encounter, Larry says, "I do wish that someone had told me that some strokes are silent and painless, while others can be devastating and debilitating."  This information is now something he never leaves out of his educational sessions!

Find out more about stroke prevention at www.worldstrokecampaign.org

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

My reason for preventing stroke? Watching my entire family carry the burden of my stroke

Mike Shapland is 56 years old and has experienced stroke twice here he shares his experience and why we should all think about our stroke risk and do more to prevent stroke.

Before the stroke did you have any idea that you were at any risk of stroke?

Well I had a stroke about 10 years prior to the recent one so although I personally didn’t think it would happen again – I think my wife was worried about my “lifestyle”. I found out recently that my Grandmother on my paternal side died from a stroke and that my Grandfather from my maternal side died of a stroke. I am aware that Strokes are not hereditary.

When and how did you realise that you were having a stroke?

I was at work – it was just after mid-day and one of my staff members asked what was wrong with my face – I also had a headache and “pin-pricks” of light spots flashing in my vision.

Can you tell us a little about your life before stroke?

I had been fairly successful in business being a Director of a listed Company. I regularly paid golf and was an active river fisherman. I was fairly social and mixed easily with people. I was seldom sick. I enjoyed alone time with various hobbies and interests. My family members being a wife Bev, and two daughters Kirsty and Caity, were in my mind a happy “team” who shared easily and openly with each other. They were very protective over each other and slotted easily into society at large. I was probably the most closed emotionally of the family.

How has life changed for you and the people around you since your stroke?

Dramatically – I was stopped from driving, I was boarded (stopped from working), I spent over a year doing rehabilitation and getting psychological help. My co-ordination was lost so I couldn’t play golf, walk easily, fishing was a struggle. Money became very tight, I went through a long stage of depression, my wife Bev was put under enormous strain keeping family and her work commitments alive. I became a loner, I couldn’t deal with noise, Malls, family get togethers, restaurants etc. I lost my pride and confidence and was terribly embarrassed that I’d had a stroke. My vision deteriorated and I live with headaches from what we assume is high blood pressure. I have managed to find part time work – but it is not meaningful.

What steps do you take now to prevent stroke?

I try to avoid stressful situations – my family better understand my people phobia so they do not put pressure on me to go out. I am on blood pressure medication and I have taken up a few hobbies. I do not smoke, but I am still overweight. I need to address that. I have read up quite a bit about strokes, so I am more aware of them, how easily they occur and that I am not alone.

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

I would tell them that I was normal once – just like them…and within a few hours, life would never be the same. I often tell them that excess stress is not worth the lifelong sentence of being a stroke survivor. I believe our lifestyle, our values of what we need and what we want are blurred and that chasing what we need, can end in disaster – I would also tell them that I am just one of the stroke survivors in my family, because my entire family have had to carry my burden – and the guilt of that is heavy.

What is your reason for preventing strokes?

There is very little knowledge out there of what a stroke is, how it affects you, how it affects your family and how common it is. This could be changed.

Stroke survivor stories - Ron Smith

Where were you when you had your stroke?  

The initial mini strokes happened at my home in Nanoose Bay, British Columbia. I had my stroke on November 19, 2012, a day, as a stroke survivor, you never forget and your family never forgets. So many people are affected

Could you access hospital?

I had what the emergency doctor referred to as a stuttering stroke. I think what he meant by this is that I had a series of smaller strokes at home before the bigger stroke hit. After the major event, which happened in the waiting room of emergency or I wouldn't be here today, I wasn’t having thoughts that registered. I inhabited a place I can only describe as ‘limbo’.

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

I was in denial from the onset, an all too common response to the symptoms of stroke. My right side was paralyzed. This was frightening. Initially my speech was impaired but this righted itself fairly quickly. With a little effort, people could understand me after a few days. Perhaps the biggest problem was that I didn’t feel like I belonged to the world anymore even though I felt my cognitive powers were still intact. The combination of loss of physical and emotional control and the sense of no longer belonging to the everyday world resulted in severe depression. After a couple of weeks I decided I could either wallow in self-pity or take action. In combination with physical therapy I decided to meditate. I also decided, very deliberately, that I needed to take a positive and proactive approach to my recovery. I have never stopped therapy. I have read as much as possible by other stroke survivors and a number of books on the brain, brain plasticity and new forms of therapy. I also used memory to find my way back to myself, to the person I had been. Patience is vital to the stroke survivor’s well-being because recovery can be very slow.

What was your experience of treatment and/or rehabilitation and therapy?

I have two complaints: My formal therapy was terminated far too early; and all forms of therapy need to be tailored to the individual; that is, personalized. The patient needs to be consulted if therapy is to be effective. Too many assumptions are made about what will work. Anecdotal accounts can be every bit as reliable and as useful as clinical research if collected properly.

What has helped you in your recovery?

Before my stroke I taught English and Creative Writing at the university level; I owned a publishing company; and I wrote and published books. I was lucky, writing was my life and was a vocation to which I could return with relative ease. Eight months after my stroke I decided to write about my stroke experience. My only handicap was that I had lost the use of my right arm and hand. I typed my book, The Defiant Mind: Living Inside a Stroke, over 300 pages, with the index finger on my left hand. The Defiant Mind is a book about the wonder that is the human brain, both before it has been damaged and after. I hoped the book would be useful to other stroke survivors, care-givers and therapists. I also hoped it would help the general public understand what a stroke is, at least from my perspective. But if my book doesn’t achieve these goals at least it will have been another form of therapy for me; another way to explore my own experience. Writing also puts my brain to work, which seems essential to my recovery. I also take walks, cane assisted, amongst trees, practicing Japanese 'forest bathing' or Shin-rin Yoku. Scientific studies indicate that trees help reduce the stress hormone, cortisol, and increase the immune defence system. And at least three to four times a week I go to a local pool. I can exercise in water with abandon. I love the water’s primal feel and wish it had been a part of my therapy from the beginning.

What have been/are your fears?

Of course, always at the back of my mind is the fear of having another stroke, a risk for which I'm genetically predisposed. But I tuck this away and carry on.

How did your family and friends feel and respond?

I've been very fortunate; my family and friends have been incredibly supportive and loving.

Stroke survivor stories - Mrs. Chithra Padmini

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?  

Ten years back, when I was forty-two, I flew to Dubai to be employed as a domestic helper. When I was on the verge of fifty, I had ill health, so I flew back to Sri Lanka in late September 2016. The following day, suddenly, I fell down in my room. I noticed that I could not talk and move my right arm and right leg.

Could you access hospital?

I was helpless because nobody was at home. I started dragging myself along the floor slowly and was able to come to the verandah. There I saw a neighbour, so I waved my left hand which was movable. Luckily, she saw me and ran to me quickly. Then with the help of my neighbours, I was admitted to a local hospital and was found to be anaemic and was transfused with two pints of blood. On the same day, I was transferred to the National Hospital in Colombo for a CT scan of my brain. I was diagnosed as having a stroke and was transferred to the stroke unit of the National Hospital.

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

By the time I was admitted to the stroke unit, I was unable to talk, walk and swallow. But my vision, hearing and bodily functions were not affected. I feared I would be bed-ridden and I felt that my life was not worth living disabled. I started losing my courage, strength and hopes.

       

What was your experience of treatment and/or rehabilitation and therapy?

The next day, I heard a gentle female voice from my bedside. She was the Doctor-in-charge of the stroke unit. She took plenty of time to explain my condition to me and my family and she advised me to engage in physiotherapy, occupational therapy and speech therapy daily. She also explained the importance of not losing courage. I just listened to her with tears in my eyes. I could not do anything else as I could not utter a word. 

What has helped you in your recovery?

Slowly, day by day, I started improving with medications and the rehabilitation programme. At the end of the first week, I was able to talk, sit up in the bed, walk with support and swallow semi solids. My hopes started blossoming. Everyday, I had to undergo well planned schedules of physiotherapy and occupational therapy. The counsellor was a kind lady who met me frequently. The social worker helped me to get the financial support that was granted by the government. After staying one month in the stroke unit, I was completely recovered without any residual deficits which I did not expect at all at the outset.

How did your family and friends feel and respond?

Although members of my family were shocked and disappointed, they gave me the maximum care and support that was vital at that moment.