Jul 30, 2019
The celebrations of the 25th anniversary of the German Stroke Foundation officially ended on its birthday on January 29th 2019. Of course the work on many projects and events continues. Here are some examples.
New Case Manager for children with stroke
The second “Case manager for children with stroke” (Schlaganfall-Kinderlotsin) was installed at the beginning of the year. Franziska Schroll works at the Schön Clinic in Vogtareuth (Bavaria) and will support families with stroke-affected children in southern Germany. The foundation “RTL – We help children” finances the project for two years.
The case manager provides information about stroke and helps families to get all the treatments, therapies and social support they need. The other case manager, Marco Vollers, continues his work in Bremen and is responsible for the northern part of Germany.
Seminar for parents
When a child has a stroke, the parents have many questions. Which therapy is best? Which lasting consequences will the stroke have? Will my child need special support at kindergarden or at school? How will the family cope with the difficult situation? Experts answered these questions at a seminar for parents. Parents had the chance to get general information about stroke and discuss their individual situation with doctors and therapists.
Stroke-scan “in jail”
Many people have high blood pressure or diabetes and don’t know about it. This is why the German Stroke Foundation offers to scan the risk of stroke at work. At the beginning of the year the testing took place in a very special location: in jail.
Jail-employees had the chance to test their risk of stroke and discuss stroke prevention. Alexander Leipold, former professional wrestler and ambassador of the foundation, talked about his rehabilitation and motivation after the strokes.
Workshop for leaders of self support groups
The foundation offers workshops for leaders and spokespersons of self support groups. In 2019 they took place in Hamburg, Halle and Zwickau. The participants learn for example about new laws, how to finance their group, how to use social media and discuss many questions. The workshops help them to be up to date and pass important information on to the other group members.
Case Management Symposium
The project “STROKE OWL” is continuing successfully. Professional case managers support stroke survivors in the region Ostwestfalen-Lippe (OWL = East part of Westphalia covering 2 million inhabitants) for one year.
With this project the foundation wants to proof that a close support after the stroke can improve the quality of life of stroke patients and reduce the risk of further strokes. 1,5 years into the project the foundation organised a symposium for case management experts to discuss the outcomes and challenges to date.
Stroke in daily soap
“Unter uns”, a popular German daily soap on RTL-television, picked up stroke as a topic in the storyline. One of the main characters gets a stroke and suffers from paralysation and aphasia afterwards. The foundation supported and advised the crew. Actors visited the foundation and spoke to stroke patients to prepare for their roles and employees of the foundation gave advice on the script.
Photo: Stroke survivor Sascha Stachorra (left) helps actor Patrick Müller to prepare for his role.
Volunteer stroke-helpers
Volunteer stroke helpers support stroke survivors in their every day life. For example they get groceries together, accompany them for a walk or play board games. More and more people are interested in working as a volunteer in this field. This is why the foundation supports courses of instructions all over Germany. Local partners help organising the project, which is now offered in twelve regions.
Day against stroke
The national “Day against stroke” on May 10th is one of the most important days for communication about stroke related topics. The motto in 2019 “I feel something you can’t see…” is based on the German name of the child’s game “I spy with my little eye.”
Main goal was to focus on the unseen consequences of stroke like difficulties to recall information or to concentrate, neglect, visual field fail and emotional changes. Many newspapers, TV- and radio stations reported about the topic and it was successfully spread across social media. #Taggegendenschlaganfall (#dayagainststroke) made it into the top 10 hashtags on twitter in Germany for the first time.
Jul 30, 2019
First published on ScienceDaily.com
Aging men with low testosterone levels who take testosterone replacement therapy (TRT) are at a slightly greater risk of experiencing an ischemic stroke, transient ischemic attack (TIA), or myocardial infarction, especially during the first two years of use, reports a study appearing in The American Journal of Medicine, published by Elsevier. The findings confirm concerns voiced by many health agencies about the potential risks associated with the treatment.
The study analyzed a large database of electronic medical records of patients enrolled in primary care practices in the United Kingdom and formed a cohort of 15,401 men, aged 45 years or older, with low testosterone levels (hypogonadism). Users of TRT had a 21 percent greater risk of cardiovascular events compared with nonusers, corresponding to an additional 128 events. The increased risk appears to be transient, declining after two years of TRT use, which the investigators attribute to a phenomenon called “depletion of susceptibles.”
“Our findings show that the use of TRT was associated with an increased risk of stroke, TIAs, or cardiac arrest during the first two years of use,” noted Christel Renoux, MD, PhD, Centre for Clinical Epidemiology, Lady Davis Institute for Medical Research, Jewish General Hospital; and Departments of Epidemiology, Biostatistics, and Occupational Health, and Department of Neurology and Neurosurgery, McGill University, Montreal, QC, Canada. “There is limited evidence on the long-term clinical benefits of TRT to effectively treat the modestly declining levels of endogenous testosterone levels of aging but healthy men. We strongly recommend that clinicians proceed with caution when considering prescribing TRT and first discuss both the potential benefits and risks with patients.”
Please read the full article here.
Jul 26, 2019
“The life of stroke victims is made difficult in several aspects. It is not only the physical handicap, but also a state of desolation. Family members can act against these troubles with good vigor and vitality, nevertheless a support of the surrounding society would be much helpful.” says Prof. Pavel Kalvach from Czech stroke support organisation Sdružení pro rehabilitaci osob po CMP (Czech Association for stroke victims).
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
PK: This is a point, which we should stress in our Czech community: more clubs for stroke victims, for stroke carers, more encouragement in terms of mutual communications, music, creative activities. The people affected by stroke can produce these activities partly on their own, but they need necessarily organizational as well as logistic support. Given such meetings would be established, we could believe, that they could then run already spontaneously. Certainly much enthusiasm is needed to put these intentions into reality.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
PK: The Czech Association for rehabilitation of stroke victims provides counselling, provides courses, activates clubs throughout the country, but its reach is by far insufficient. Many healthy, retired people, who could actively contribute to the care of those less happy in their physical health state, ignore the needs of stroke individuals and thereby also their eventual personal pleasure of making good deeds. Our organization should be more proactive in sharing knowledge and encouraging people in those activities. Self-supporting groups could be conceived and we should reach out to put them in life.
SAFE: Please tell us more about your organisation.
PK: The activity that the Czech Association for stroke victims takes the most merit for is the arrangement of summer camps, aiming at rehabilitation. These courses occur in recreational regions of Czech republic. Care of physiotherapists, of medical doctors, psychologists and logotherapists is provided for groups of approximately 40 persons. These courses are financially supported by our Ministry of health, who would cover ½ of the expenses. The other ½ is covered by each person himself. Besides of the medical and psychological individual and group training also cultural activities are organized, like visits to the sightseeing around, or collective singing, or even dancing. People take great pleasure in such course, but the number of those, who achieve to participate is still too low: About 200 per year. If we compare this with the prevalence of stroke victims in Czech Republic, this number make less then 5% of people, who could profit.
Jul 24, 2019
First published on ScienceDaily.com
A new method of evaluating irregular heartbeats outperformed the approach that’s currently used widely in stroke units to detect instances of atrial fibrillation.
The technology, called electrocardiomatrix, goes further than standard cardiac telemetry by examining large amounts of telemetry data in a way that’s so detailed it’s impractical for individual clinicians to attempt.
Co-inventor Jimo Borjigin, Ph.D., recently published the latest results from her electrocardiomatrix technology in Stroke. Among stroke patients with usable data (260 of 265), electrocardiomatrix was highly accurate in identifying those with Afib.
“We validated the use of our technology in a clinical setting, finding the electrocardiomatrix was an accurate method to determine whether a stroke survivor had an Afib,” says Borjigin, an associate professor of neurology and molecular and integrative physiology at Michigan Medicine.
A crucial metric
After a stroke, neurologists are tasked with identifying which risk factors may have contributed in order to do everything possible to prevent another event.
That makes detecting irregular heartbeat an urgent concern for these patients, explains first author Devin Brown, M.D., professor of neurology and a stroke neurologist at Michigan Medicine.
“Atrial fibrillation is a very important and modifiable risk factor for stroke,” Brown says.
Importantly, the electrocardiomatrix identification method was highly accurate for the 212 patients who did not have a history of Afib, Borjigin says. She says this group is most clinically relevant, because of the importance of determining whether stroke patients have previously undetected Afib.
When a patient has Afib, their irregular heartbeat can lead to blood collecting in their heart, which can form a stroke-causing clot. Many different blood thinners are on the market today, making it easier for clinicians to get their patients on an anticoagulant they’ll take as directed.
Please read the full article here.
Jul 22, 2019
Today, on this year’s World Brain Day, SAFE is very proud to share the information of one of our stroke support organisations receiving a project grant from EFNA. The Stroke Association Serbia (“Moždani udar”) is awarded a grant for their #BrainLifeGoals campaign which includes young stroke survivors from Serbia.
Disclaimer: The information below was first published on EFNA website.
The #BrainLifeGoals campaign is an initiative of the European Federation of Neurological Associations [EFNA] that aims to raise awareness of the impact of neurological disorders.
In support of this campaign, EFNA will award grants, of €2,500 each, to projects that best reflect the theme of the campaign, raise awareness and improve understanding of neurological disorder. 28 applications were received from 13 different countries and a wide range of disease areas. The original intention was to award a grant to five projects, but we are pleased to announce that due to the high-level of interest and quality of applications, eight projects have been selected!
The chosen projects are:
‘Brain Conditions Cartoon Novel’ – Association of Patients with Neurodegenerative Conditions (APAN), Romania
‘Raising Awareness of Restless Legs Syndrome’ – European Alliance for Restless Leg Syndrome (EARLS), The Netherlands
‘Empowering People with Neurological Conditions to Realise their #BrainLifeGoals’ – Neurological Alliance of Ireland (NAI)
‘Cavernoma Society Raspberry Day’ – Cavernoma Society UK
‘Stroke Survivors’ #BrainLifeGoals’ – ‘Moždani udar’ – Stroke Association Serbia
‘Aspirations of Hope’ – European ME Alliance, Belgium
‘Stand Up Chemistry for children with learning difficulties’ – Pan-Hellenic Association of individuals with Attention Deficit/Hyperkinetic Disorder (ADHD Hellas), Greece
‘Step Up for Parkinson’s Performance’ – Step Up for Parkinson’s, Malta
For more information, please read the full article here.
