We invite you to comment: The WSO Stroke Research Committee research recommendations relevant to the WSO mission for Stroke Treatment, Prevention and Recovery

The WSO Stroke Research Committee has been working to establish a set of research recommendations relevant to the WSO mission for Stroke Treatment, Prevention and Recovery.  In establishing these draft recommendations the committee systematically collated, categorized, and reviewed research recommendations from multiple other national, regional, and patient-centered stroke organizations.  The WSO Board members were asked to review and prioritize these research recommendations.  Recommendations were rated on how strongly they definitely should be included among the top recommendations related to the WSO mission.  The top recommendations are listed below:

Stroke Treatment

1. Expand and integrate existing stroke trial networks to accelerate translation

2. Establish stroke centers and stroke units to assist patients with acute stroke

Stroke Prevention

1. Establish a global chronic disease prevention initiative that includes stroke as a major focus among a cluster of conditions

2. Prevent vascular cognitive impairment

Stroke Recovery

1. Standardize the practice of post stroke rehabilitation based on best evidence

2. Evaluate of the best ways to address and improve life after stroke:

            (a) Improve cognition after stroke;

            (b) Help people come to terms with the long-term consequences of stroke;

            (c) Enhance recovery from aphasia; and

            (d) Improve arm recovery and function.

These draft recommendations approved by the WSO Board in October 2014 are now being posted for member and public comment.   At present, we request WSO members and other stroke constituents to review these draft recommendations and post any comments on the BLOG.  Comments will be collated and reviewed by the WSO Research Committee and included in their final report.  We will be accepting comments until Friday, January 23rd, 2015.

If you are having difficulty commenting then please feel free to email your comment directly to carmenl@unimelb.edu.au or on our Facebook 

Global stroke bill of rights

As a person who has had a stroke, I have a right to:

Receive the best stroke care

Receive the best stroke care
• a rapid diagnosis so I can be treated quickly
• receive treatment by a specialised team at all stages of my journey (in hospital and during rehabilitation)
• receive care that is well coordinated
• access treatment regardless of financial situation, gender, culture or place that I live
• receive treatment that is right for me as an individual – considering my age, gender, culture, goals and my changing needs over time

Be informed and prepared

Be informed and prepared
• be informed about the signs of stroke so I can recognise if I am having one
• be fully informed about what has happened to me and about living with stroke for as long as I require it

Be supported in my recovery

Be supported in my recovery
• be provided with hope for the best possible recovery I can make now and into the future
• receive psychological and emotional support in a form that best meets my needs
• be included in all aspects of society regardless of any disability I may have
• receive support (financial or otherwise) to ensure I am cared for in the longer term
• be supported to return to work and/or to other activities I may choose to participate in after my stroke
• get access to formal and informal advocacy to assist me with access to the services I need
• be connected to other stroke survivors and caregivers so I may gain and provide support in my recovery from stroke

It is a tool that can be used by individuals and organisations to communicate with stroke care providers and with governments and their agencies about what people affected by stroke think are the most important things in their recovery. Many aspects of care considered important by those affected by stroke, and included in this document, have been shown to reduce death and disability after stroke.

The Global Stroke Bill of Rights is not a legal document. It is a guide to the elements of stroke care that are important to stroke survivors and care givers to drive to the best possible outcomes and experiences associated with stroke.

The Global Stroke Bill of Rights was developed by us, a group of stroke survivors and caregivers from each region of the world. We were supported by a larger group of survivors and caregivers and by thousands more from different countries, cultures and language who completed surveys to understand if there are any differences in different parts of the world. Their responses demonstrated that what is considered to be important in stroke recovery is consistent regardless of where people affected by stroke live.

The issues identified through this process are outlined in the Global Stroke Bill of Rights, listed according to the importance survivors and caregivers placed on them.

We hope that it is a useful tool to help improve access to care for people affected by stroke, better diagnosis and treatment of stroke which ultimately leading to improvements in stroke care and support across the globe.

Marta Cerar #strokeart2014

I am Marta Cerar, and it was summer 1997 when I went to mountains. Somehere half way hiking I had a stroke. My partner helped to came down to valley and to the hospital. My life has suddenly changed completely; I had a lot of rehabilitation but was retired very soon after my stroke and only at age 31. I had two children to care for. My right arm is only partly working, soon after stroke I started to ski, cycling, swimming and hiking in low hills. But was searching for more activities to fill in my life and attended few courses. Painting, however was always attractive to me and I am now painting with my left arm, using different painting techniques. I enjoyed it so much that often forget that I am using my left arm.

Ivan Lesjak #strokeart2014

I am Ivan Lesjak from Slovenia. I am 68 years old. I value my life through what I am doing and have been always busy. Stroke has »caught« my arm and leg but my longing for doing meaningfull occupations has stayed within me. After stroke, I have been searching for my occupations… a lt of trial and errorr… and finally – I have found the meaning of life again. The desire from my youth to do something that time did not allow me to do it in the past has emerged into modelling the old vessells from 15.-16. centrury. Some also have wireless management and they were already sailing in the lake close to where I am living. I have made some tools by myself and endless hours of hand work has given me a lot of pleasure. I am proud of what I am doing.

Molly McGlade #strokeart2014

					I live in Draperstown and was born on 20 August 1934 in Ballymacpeake, County Antrim. I suffered my first 'mini stroke' at the age of 55. This didn't affect me so much and I recovered well. At the age of 61 I then suffered a 2nd stroke which was a bleed on the brain. I needed alot of speech therapy. I joined the NI Chest Heart & Stroke shortly after my first stroke. I found it very helpful to meet with people who suffered the same thing. I also got introduced to new activities - eg. art, pottery, handcraft work. I have enjoyed the art work in particular. (see example below). I suffered a 3rd stroke at the age of 70 which affected my balance on the left hand side. I received physiotherapy along with occupational therapy. I enjoy meeting up with colleagues at the NICHS in Cookstown and have made good friends. We have produced alot of art work which I enjoy doing.

Jo Avis #strokeart2014

I started painting during my rehab and recovery from x 2 massive strokes that I had at 26. They were caused by the heart infection endocarditis. I had to relearn to walk, talk, swallow and all activities of daily life. But over a 2 year period I manage to regain enough lost skills to return to my job as a special needs tutor at the local college, although only part time and back to living independently rather than at my parents home. I am doing very well in general but do suffer with sensory deprivation and central stroke pain on my left sides and lots of headaches as a result if my stroke but I not complaining, I am better than ever predicted. With a friend I started a Facebook page (www.facbook.com/year10.avis.art) to mark my ten year milestone as a stroke survivor.by selling my paintings to fund raise (for the Stroke Associations life after stroke centre Bromsgrove UK) It felt like the right thing to do as my love for painting was as a direct result of having strokes. I do landscapes, seascapes and abstract painting using acrylics, My painting is a daisy field 80cm x 30cm x 3cm

Hikka Honkasalo #strokeart2014

My name is Hilkka Honkasalo. I live in Finland where I was born. I had a brain tumor resection done in 2000, leaving me with a right-sided hemiparesis and aphasia. I had to give up my 30-year career in the garment business. After the onset I found painting. I started with the aquarelle and acrylic painting, but have moved onto oil painting completely now. I am inspired by the following artists: Soile Yli-Mäyry – strong colors and the dissimilarity Claude Monet- softness of the colors Vincent van Gogh- the movement and craziness, expression of ugliness with a beauty Paul Gaugin- the colors Name of my art piece for the competition is “Joakim “

Jack Sully #strokeart2014

Age 80. Jack has his stroke in 2003 and has weakness down his right side and has learnt to use his left hand post stroke. Jack was not involved in art prior to his stroke and a friend told him about the Thornbury Stroke Art Group. Jack States the inspiration behind this piece was a Christmas card and it took him 4 hours to complete. When asked what art means to him, Jack replied ‘A new interest that I find therapeutic’

Jo Smith #strokeart2014

Age 60. Jo has always enjoyed art, she has trouble using both hands, she is unable to walk and has problems with her memory and speech. Jo enjoys attending Brushstrokes and using watercolours.

Elsie Pruett #strokeart2014

Age 80. Elsie had her stroke when she was a teenaged and has since had trouble walking and with dexterity. Elsie was not involved with art prior to her stroke and joined in art groups with friends post stroke. This piece was created as a birthday gift for a friend. Each piece took Elsie about 6 months to complete and her friend (June) wanted to show this piece to celebrate her achievements. When asked what art means to Elsie, she simply replied ‘Everything’

Graham Jerrold #strokeart2014

Age 72. Graham has his stroke in August 2010 and was left with right sided weakness and loss of manipulative skills. He also has some cognitive problems and memory loss. Graham always drew and sketched prior to his stroke an enjoyed visiting art exhibitions and galleries. Post stroke graham has art therapy at a hospice day centre and then joined an art group that meets once a week. This picture was produced at the suggestion of a very inspiring art therapist who helped Graham to overcome the despondency of loss of fine motor skills. It took Graham an hour to create this piece and he wanted to show it as it represents a complete break with his previous accurate and precise style and he is able to recognise his merits. When asked what art means to him, Graham replied ‘It is something I can do alone or in company and I have met some very kind and appreciative people through joining a group’

Masami Hasegawa #strokeart2014

My name is Masami Hasegawa. I was born and currently live in Japan. I had a stroke twelve years ago at age 60, which left me in long-time struggle with right hemiplegia and severe aphasia. I had no interest in making my own art work before the stroke. However, things have changed since I joined the Sumomo Club in Osaka, Japan, a day-care facility specialized for people who have aphasia or other communication disorders. Encouraged by my peers and staff there, I started photography and painting with my left hand. It took me some time to get used to it, but I have enjoyed it so much, that now I do it every day, even at home. Picking up my camera/paintbrush is one of the essential parts of my current life in terms of expressing myself.

Taketoshi Maesugi #strokeart2014

My name is Taketoshi Maesugi. I was born and currently live in Japan. I had a stroke eight years ago at 49 years old. I had no interest in making my own art work before, as I had been extremely busy with my job, carpenter. However, things changed since I joined the Sumomo Club (a day-service facility in Osaka, Japan). Encouraged by my peers and staff there, I started photography and painting. I really found out that anybody has artistic potential. I never imagined that I could take photos or draw a picture, but I am enjoying it very much now. I am also very happy to see people smiling when receiving

presents of my art work.

Kiyokazu Omori #strokeart2014

I’m Kiyokazu Omori. I was born and still live in Japan. I had a stroke four years ago when I was seventy years old. Since then, my speech has become extremely limited due to severe aphasia. I spend most of my time painting at home. Selecting a nice scene, which I like, drawing it even to the details, and showing my work to my friends at the Sumomo Club (a day-service facility in Osaka, Japan): the whole process is hugely enjoyable. Beyond the speech/language barrier I’m facing, I get to express myself with confidence through art, which is very valuable to me.

Michio Umeki #strokeart2014

My name is Michio Umeki. I was born in Japan and still live there. I was forty-eight years old when I had a stroke, which is already nine years ago. This event brought me a drastic change in my life, with right hemiplegia and moderate aphasia. Actually I have never painted before the stroke. When I began to paint at the Sumomo Club, I had a hard time for a while to get used to, as I use my left hand. But now, I get to work even on pretty big paintings. An activity like this has been helping me to regain self-confidence little by little. I am extremely happy when I see my wife put my paintings on the wall at home. I also often give it away to somebody like my friend or family. It is such a rewarding experience to get to see someone’s smile with my art work.

Yoshiaki Aoki

My name is Yoshiaki Aoki. I was born in Japan and still live there. I was fifty-six years old when I had a stroke, which is now sixteen years ago. Since then, I have struggled with severe aphasia, but no physical disability. I spend a lot of time outside walking around in town with my company: my camera. I try to find patiently an interesting or funny place or thing to take the best shot. Even though my speech is quite limited, my photographs tell everything about me, my focus and my interest. It is my utmost joy to show my work to my family and friends at the Sumomo Club.

Keith Anderson #strokeart2014

My name is Keith Anderson I am 58 years old.I live in England my stroke was in 2007, I was left handed but lost the use of my left hand side, I self taught myself to paint and have dabbled in all mediums from oil paint to Pastels, also air dry clay, metal embossing, parchment craft and more. This year was given the chance to attend classes at The art Studio Sunderland a charity run place where members get their own studio space to make and display their own artworks and use the facility's~ ceramics room with kiln, printmaking room with various printing processes. A friendly group who all have mental/ Physical disabilities

Keith Anderson #strokeart2014

Since my stroke in 2007aged 50,despite having the use of one hand I've taken up painting, in oils,acrylic,watercolour. Also attend The art studio Sunderland a charity based centre for people with mental issues where activities include ceramics,printmaking,digital photography,painting etc have many paintings etc to have to choose just one is difficult.

Lisa Wagner #strokeart2014

I am from Pine Bluffs Wyoming, USA. I had a stroke on Aug 10th 2013 and have aphasia now. Learning to talk and write again a long on going journey. I am 56 now and have had two other stroke on May 17th 2014 and July 15th 2014. Still work with doctor find out why. My artwork keep my brain working and right arm, which a battle sometime now. This computer art. My strokes from blood clot too fast. I not give up, I PICK to Survive this. I hope I inspire others to try too. Blessings.

Enrique (Hershele) Rotenberg #strokeart2014

Enrique (Hershele) Rotenberg KIBBUTZ HAHOTRIM ISRAEL I was born in Argentina and immigrated to Israel at the age of 20 to the kibbutz where I live to this day. I married, we had 3 wonderful children and today I am blessed with 5 grandchildren. I served in many key positions in the kibbutz and was also an officer in the Israeli army. At the age of 45 I had a heart attack, followed 3 years later by a severe stroke, leaving me very handicapped. Before the stroke I had no experience in creating art. However, I began to paint with a teacher and today I also sculpture in clay and papier-mâché. I enjoy great satisfaction from my creativity and am able to “console myself” with the fact that if not for the stroke, I would never have discovered my ability to create and enjoy this pastime. Today I am already 17 years after the cerebral vascular accident.

Susan Lewis #strokeart2014

My name is Susan Lewis and I was born in Manchester UK. I had a stroke at the age of 62 in 2009. My left side was affected, I was unable to walk or use my left hand and I am a left handed person. Eventually I regained the use of my limbs but I still have some weakness. I started to draw and paint bookmarks with my daughter just to see if I could manage to create something small. I found this to be very relaxing and therapeutic. I decided to find an Art Class and joined one in April 2014. I have now painted two landscape watercolour pictures for the first time in my life and I hope to carry on painting because I love to paint and I have also met some lovely people at the class. I now have new friends and a wonderful hobby which I hope will continue for the future.

Moshe Shoham #strokeart2014

Moshe Shoham (69), born in Argentina and immigrated to Israel in 1965. A member of Kibbutz Afik where he fulfilled many senior administrative roles. Worked in hotel management and specializes in economics of food and nutrition. Suffered a stroke 9 years ago. Took the leadership role in establishing a club of Neeman for stroke survivors and their caregivers in the many isolated settlements around the Sea of Galilee. “As a result of my stroke, I partially lost my third dimensional sight, in addition to left side hemiplegia. Consequently I have chosen to create largely abstract works in painting and ceramics. In that way I am able to give expression to movement and sharpness of colours.” Presenting works from 2013-14 Digital paintings and Ceramic sculpture Photos by Gal Lapid/Moran Grosz

Jessica Thåström #strokeart2014

I suffered a stroke at 16, brought on by contraceptive pills. It caused all disabilities associated with stroke, except aphasia, such as; hemiparesis, sensory disturbances, visual field loss, chronic fatigue, attention disorder and Neglect. I lost insterest in life, became suicidal and could not see a future. I suffered from depression and PTSD due to the time I spent in the hospital. It took six years to find my way back to my art, and found my own techinques and motifs. My art is stroke related; how it feels to live with the effects of stroke, to literally feel like half a body and how it feels to live with this fatigue. I will never recover fully, but I have found quality of life through art and writing my biography. I will soon be 23 years old and I have gone from being a shy and timid girl – STROKE – to being hateful and depressed with no visions for the future, to speaking publicly about my experiences and finding my own voice. I feel as though I was meant to suffer all the effects except for aphasia; I was born to speak. To tell of the flipside of stroke.

Paul Edgerton #strokeart2014

Hi I'm a stroke survivor from Stockport and I turned to art when I became ill with Angina, then I had my strokes and my art work has gone bigger and better, It helps me to relax and it takes away all the pressure and anxiety that builds up when you've had a stroke. I started drawing first then moved on to water colours, now I'm doing large canvas's with acrylics. It's great fun.

#strokeart2014 M. Shoham

Art work from stroke survivors will be on display at WSC 2014 in Istanbul.

#strokeart2014 Anita Hamers - Dijkstra

My name is Anita Hamers - Dijkstra, I'm 47 years old, born in Hoogwoud and I live in Spanbroek in the Netherlands.

I am a member of the Dutch Association stroke support organization.

After my education of four years ‘Painting and Exhibitor’ at the Nimeto in Utrecht  I worked two years as Exhibitor. In 1988, twenty-six years ago at the age of 21 years, I've had my stroke.
Since this time I had to paint left, which was pretty difficult in the beginning. Fortunately, my inspiration was not lost. Now I paint again since 1992 it has helped me in my recovery, and it will continue to help me in the future. Life has regained value by being able to paint.
In 1995 I married, our son was born in May 1997. The birth of my son has influenced my paintings at that time. I painted subjects that had to do with "children."
My motivation I get again and again the challenge to combine my fantasy thoughts with my feelings this 'combination' than is reflected in my paintings.

My technique is partly determined by the subject to paint on a fantasy - "unnatural" way to approach. The subjects of my paintings are created by combining today experiences with my colorful imagination.