Report of EAN /WSO / AAN/IBRO/WFN / EHF/LINF 9th Regional Teaching Course (RTC) on Neurology in Sub - Saharan Africa . Ougadougou, Burkina Faso 8 - 11th November 2017

The 9th Regional Teaching Course (RTC) took place in Ouagadougou Burkina Faso on November 8 – 11, 2017. The meeting was hosted by Prof. Jean Kabore, Head of the Neurological Department of the Yalgado Ouedrago Hospital of Ouagadougou together with Prof. Athanase M ilogo, Head of the Neurology Department of the Sanou Sourou hospital in Bo Bo Dialasso and Prof. Christian Napon, head of the Neurology Department of the District Hospital of Bogodogo, Ouagadougou. The RTC took place at the National Hospital “Blaise Compa ore”.

Agreed definitions and a shared vision for new standards in stroke recovery research: The Stroke Recovery and Rehabilitation Roundtable taskforce.

Stroke Recovery and Rehabilitation Roundtable - definitions - Karen Borschmann and Kate Hayward

Common language and definitions were required to develop an agreed framework spanning the four working groups for the The Stroke Recovery and Rehabilitation Roundtable taskforce. 

: translation of basic science, biomarkers of stroke recovery, measurement in clinical trials and intervention development and reporting. 

The Stroke Recovery and Rehabilitation Roundtable (SRRR) was convened with the aim to move rehabilitation research forward. Working collectively across four initial priority areas the #SRRR team reviewed, discussed, and attempted to achieve consensus on key recommendations in each of the areas of translation of basic science, biomarkers of stroke recovery, measurement in clinical trials and intervention development and reporting. 

Stroke support stories - Dr Arosha Siriwardana, Sri Lanka

The World Stroke Organisation is committed to developing 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

The establishment of the first stroke support group in Sri Lanka

Dr Arosha Siriwardana, Senior Medical Officer, Neurology Unit, National Hospital of Sri Lanka, tells us about the new stroke support group.

Context

There has been a growth in stroke incidence in Sri Lanka since 1990 (Global Burden of Disease 2010) and stroke is the second leading cause of death in the country (WHO 2012). There are also a significant proportion of stroke survivors of working age in Sri Lanka.

Response

Dr Padma Gunaratne, Senior Consultant Neurologist at the National Hospital of Sri Lanka, recognised the need for increased support for stroke survivors and she mobilised a team of professionals to organise the stroke support group. The team consists of doctors, nurses, therapists, social services officers, counsellors and care givers.

The vision

On 28^th January 2017, the first stroke support meeting was held and the group was established. 26 stroke survivors attended. It is a mixed gender group and members have both speech and motor disabilities. During the meeting, the participants registered as members of the group and the objectives of the group were agreed in all three languages: Sinhala; Tamil and English.

Dr Gunaratne welcomed the new  members and shared the vision to establish more groups across Sri Lanka. The Deputy Director General of the National Hospital, Dr Jasinghe talked about the popularity of social support groups in other countries and the advantages of setting up stroke support groups in every main hospital. President of the National Stroke Association of Sri Lanka, Dr Riffsy, highlighted the importance of sustaining this activity in future. 

Discussion
Mr Bandara, from the Social Services Department of Sri Lanka, explained the role the department can play in providing financial support and assistance devices such as wheelchairs and walking aids for stroke survivors.

One of the care givers, Mrs Ovitigedera, told the group about her experience as a successful care giver of her husband who was affected by a stroke.

Other participants shared their stories and experiences, which at times were quite emotional. They were worried about the abilities that they have lost and they dream about getting back to their previous lifestyles. Some expressed their happiness about still being alive. 

The issues raised in the question and answer session included questions about the length of rehabilitation treatment and living with epilepsy.

The future

As Buddhists, Dr Siriwardanawe explains that they have been taught to listen to Dhamma sermons, to learn and remember them and to practice them. In Sri Lanka, stroke support groups can help people to practice Dhamma, demonstrating altruism, generosity and humanity. Ultimately, all members of the stroke team can also benefit from developing and providing stroke support for stroke survivors and their families. Dr Siriwardanawe feels confident that the stroke support groups will be cherished by Sri Lankans in future.

If you would like to find out more about the stroke support activities in Sri Lanka, please contact sarah.belson@stroke.org.uk 

Stroke Survivor Stories - Ron Smith

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?  

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.