Apr 29, 2019
Too many people affected by stroke aren’t getting the support they need. As a charity, the Stroke Association UK knew they needed to reach more people.
On Friday 26 April they have launched their first ever TV-led marketing campaign, Rebuilding Lives.
Rebuilding Lives is aimed to change the way people think about stroke using the real life stories of stroke survivors. Told in their own words. Unscripted. Unfiltered. It is directed by award-winning director Lotje Sodderland, who is herself a stroke survivor. The stories told show that stroke can strike anyone at any time, changing lives in an instant, but that life after stroke is possible. With the right specialist support and a ton of courage and determination, people can recover and adjust to a new normal. The Stroke Association is there to support people to rebuild their lives after stroke.
For more information, please visit https://www.stroke.org.uk/rebuilding-lives
Apr 25, 2019
“Currently, in Portugal, when a stroke occurs, the first phase of treatment, the acute phase, happens in similar conditions to the ones of the best practices in Europe. The first rehabilitation, still within a hospital circle, is already implemented with great differences across our country, and, on average, isn’t as satisfactory. After… when the real life after stroke begins, the survivors and care givers, generally, feel alone, helpless! It’s mostly in that moment, when the biggest problems start (including the psychological, socioeconomic, life reorganization, etc. ones), that, in most cases, there are flaws. Not only in the continuity of the strictly therapeutic recovery, but also in the social and psychological support, among others…” says António Conceição, President of the Portugal AVC, a stroke support organisation that is part of SAFE.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
AC: In Portugal, above all, it’s necessary to remind people, specially people with influence (not only political but other), that survivors have a life after stroke! That they can be active and useful citizens just like everyone else. And an essential contribution for that is making rehabilitation possible and accessible to everyone, as well as making it starts fast, timely and multidisciplinary (since it needs to involve multiple medical and therapeutic areas, that don’t restrict themselves to the physical or motor situation).
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
AC: Our procedure, especially in our possibilities of public intervention, has been directed towards two themes: life after stroke and the defense of a better rehabilitation. Recently, we celebrated in Portugal the National Day of Stroke Survivor (31st March). All of our communication, including the one on social communication, followed this line of work: the defense of a fast, timely and multidisciplinary rehabilitation. We pointed out some very concerning flaws. The Portuguese Stroke Society (a medical and scientific organization) also followed an identical theme in its communication. Furthermore, the president of this society, a very prestigious person, said a sentence, a few years ago, that we also repeat many times: “Rehabilitation isn’t a charity, but a right! If needed, during the entire life!” We have conscience that our action has contributed to give prominence to this subject too.
Deeply connected to this theme is the defense of life after stroke, with the maximum quality possible, and the Action Plan for Stroke, by giving the proper importance to life after stroke, has helped us in this struggle. In Portugal, for initiative of the Portuguese Stroke Society, we are working on adapting this plan to our national situation. Unfortunately, we are aware that our action is only starting…
SAFE: Please tell us more about your organisation.
AC: Portugal AVC is a national association, made of stroke survivors, but also of caregivers and health professionals, founded in September 2016. Working like this, we have been functioning very well.
We have, as statuary goals, to contribute to the prevention of stroke and to respond to the needs felt by stroke survivors and their caregivers. And we defined three areas of action as priority:
– Making information available, about all “stages” of stroke, from the prevention to the life after stroke.
– To be the voice of survivors and caregivers, in the government entities and social communication.
– Mutual help. By giving answer to the multiple requests we receive, including by telephone, email, Facebook, … But also, we have promoted and supported the appearance of Support Groups (GAMs). We have already 14, in different places in the country.
Among other activities, we highlight the “Portugal AVC Meetings”. They are moments of interaction with the survivors, caregivers and health professionals, that have had a strong adherence and fantastic environment. We already organized seven, always in different locations, from the north to the south of the country.
However, we are aware that, considering the needs, we are only beginning…
Apr 23, 2019
Atrial fibrillation (AF) is an irregular heart rhythm with rapid and irregular beating. It is estimated to increase the risk of stroke 3 to 5-fold and to be associated with around a quarter of all ischaemic strokes. Additionally, AF is associated with more severe strokes leading to higher mortality and disability. We have discussed this topic with Prof. Dr Anita Arsovska, University Clinic of Neurology, Medical Faculty, University “Ss Cyril and Methodius”, Skopje, North Macedonia, FESO, SAFE Board Member.
Apr 19, 2019
Portugal AVC, stroke support organisation and a member of SAFE, recently published a collection of 21 life stories of stroke survivors. We present you the text that Portugal AVC President, António Conceição, shared with us on this occasion.
…
Author: António Conceição
We started with posting on Facebook 2 or 3 testimonies, that arrived to us, of people describing their post-stroke life. We quickly realized that these were the most read posts and that they had incredible reactions: We were contributing, with concrete examples, all very different among them, to the motivation of other stroke survivors!
That way, throughout the next year, we challenged some survivors and caregivers to give their testimony. With completely different life stories, some of them truly difficult, but with something in common: to show how it is possible, even with adaptations, to rebuild a life and reach happiness again!
We have gathered 21 life stories, available on our website, truly extraordinary, with different ages, circumstances and time passed after the stroke. All of this with a worry in the background: to take strength where it seems to lack!
We thought about putting into paper these amazing life stories, to make them more accessible, and in a lasting way. We found a writer of children’s books, a psychiatrist that doesn’t practice, an extraordinary and very sensible person, and we challenged her to compile all of these testimonies, with total respect for the story and style of each person.
Out of this came out a book that has had fantastic reactions, a lot more than what we were expecting. As the writer wrote in the preface: “When nothing seems to be in favor, there is still an unknown inner strength left, a never seen before resilience, an unbelievable ability to overcome, a selfless and unconditional love that no one imagined possible… (…) With more or less difficulties, you are able to discover a new life path, with the goal of accepting what seemed unacceptable. (…) And, if in a sea of physical, emotional, social, familiar, logistic and financial problems, there are those who are able to turn their lives around and find the inner peace and sense of life that most human beings look for, that means it is possible to survive, it is possible to win, it is possible to restart!”.
The book was published on the National Stroke Survivor Day (31st March) and had a formal launch on the last Portugal AVC Meeting (13th April).
It’s one step further in the path of Portugal AVC, who has as one of the main goals to support the stroke survivors in the path of rehabilitation and integration, as complete as possible!
About Portugal AVC
Founded on September 23rd, 2016, the Portugal AVC represents the 1st national associative entity led by stroke survivors of stroke. It includes stroke survivors’ family members, as well as health professionals, caregivers and friends who embrace this cause.
The Portugal AVC is made by and with stroke survivors, who cover three out of five positions in the Executive Board, including the President.
Photo credit: Portugal AVC
Apr 19, 2019
“There is no stroke rehabilitation center in Kutaisi, Georgia, and after their hospital treatment, patients are discharged to go home. Unfortunately, patients’ carers do not have enough information on how to take care of them once their loved ones are back home. Due to swallowing problems, many of stroke survivors return to the hospital very soon after their discharge, this time not because of stroke, but because of aspiration pneumonia- a type of lung infection that is due to a relatively large amount of material from the stomach or mouth entering the lungs” says Tamar Janelidze, MD, neurologist, co-founder and board member of Georgian stroke support organization, Medical Foundation Mkurnali.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
TJ: In Georgia, there is an observed growth trend in cerebrovascular diseases. For last years, at the national health sector level, special attention is paid to acute strokes. In general, stroke is one of the main causes of disablement of the population of Georgia. In particular, most of patients that survived stroke are disabled, and 30-40% of them needed permanent care. Because of a deficiency in rehabilitation services in Georgia, no correction of neurological impairment can be made completely for stroke patients that reduces the quality of life. In response to the urgency of this disease, it is very important to study the methods for fighting this disease and for the management of its complications, as well as for its proper diagnosis.
In Georgia, at our hospital, at the premises of the neurology department, there have been established the stroke management units, the so-called stroke units, which allow not only for effective treatment of stroke patients, but also for assessing the complications and possible risks associated with stroke. 65% of patient had dysphagia, which evolves as a result of infringement of brain blood circulation, and appears as inhibition of swallowing reflex, or as its complete elimination.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
TJ: There is the risk of an aspiration of foods in the airway that consequently may lead to aspiration pneumonia. Our organization contributes to the introduction of dysphagia screening in the neurology department, which include the studies were actively started for the detection of dysphagia. First, swallowing reflex is checked and lingual condition is assessed in all patients, as well as there is differentiated whether dysphagia is a neurological complication or not. Then the studies are carried out through video-photofluorography roentgenoscopy. Patient swallows the contrast substances of different consistencies, and radiologist assesses radioscopically the swallowing process. Also, in some cases, of high importance is to assess the pharynx condition, for which we apply to an endoscopy.
After the mentioned examination, an attending physician and radiologist make decision on how the dietary regime of patient should be carried out. Of all 120 examined patients, dysphagia was detected in 85, and an appropriate examination regime and treatment were chosen for them, and in some of them the need of gastrostomy was identified. Analysis of latest data has shown that the problem of proper diagnosis of dysphagia allows for reducing the complications, even such as aspiration pneumonia that in turn is the most dangerous complication in terms of mortality.
Thus, proper diagnosis is a guarantee of preventing possible disablement and anticipated mortality.
SAFE: Please tell us more about your organisation.
TJ: Our organization participates in s patient’s educational program not only for stroke patients. We also have relations with government of Kutaisi and also Kutaisi University and try together to make our patients’ lives better.
