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FEATURE:  Facebook Groups for Young Stroke and Aphasia Survivors



Editor's Note:  
Amy Edmunds, a stroke survivor, is a globally 
recognized advocate of young adult stroke patients. Her group - YoungStroke, Inc., is a 501c3 non-profit advocacy organization that evolved from her graduate research to extend understanding of the stroke experience among young adults and their caregivers.


Referring to young stroke survivors in her article  "Speak Up and Speak Out", she says:


When stroke leaves a young adult with aphasia, the sudden loss of ability to communicate imposes hardships upon social and workplace relationships which differ from geriatric stroke survivors. 


Social relationships are often honed during early adulthood as interpersonal evolve during dating and early marriage. Young adults who experience aphasia may forfeit opportunities to build such meaningful, committed relations due to their inability to effectively express emotions . . . in addition to managing other deficits imposed by stroke. In contrast, many geriatric survivors have already experienced such relationships. Additionally, many have nurtured long-lasting friendships and raised children into adulthood. 


Amy adds:

Globally, young stroke survivors are an emerging population driven by epidemics of obesity, hypertension and diabetes. Within six years, nearly two million Americans who have suffered a stroke or brain injury will be living with aphasia according to the American Speech-Language Hearing Association. 


The growth in survivors - with stroke or stroke resulting in aphasia, correlates with the formation and growth of Facebook groups specifically for young adults (ages 18 to 50 of age). This age group can certainly be considered to be digital natives,  and their use of Facebook and other social media reflects that trend.


Here we identify some of the leading groups for young people with stroke and aphasia.   


Contact us if you want to know how we can help a young person in your life with aphasia,  or if you want to learn about our YPRA (Young People Recovering from Aphasia) Cafe, a conversation group.  

Aphasia Recovery Connection - Update


ARC Logo new

The Aphasia Recovery Connection has its Ohio Retreat scheduled for August 5 - August 7. ARC has advised us that the retreat is sold out.


Please contact Kim Huggins if you would like to be placed on the waiting list should cancellations occur. 

"Strokefinder"  helmet  may save lives


A device, dubbed the "Strokefinder", may help doctors  find the underlying cause of a stroke fast.



The device, under development in Sweden, was inspired by computerized simulations created to investigate the effect of cellphone radiation on the brain.


The Strokefinder "consists of an array of 12 antennas arranged around the head like a helmet. One by one, each antenna beams a low-power microwave signal through the skull, and the other 11 detect how the signal has changed after passing through the brain. The device then analyzes the microwave patterns to detect cranial bleeding. The whole process takes only a few seconds."


Biomedical engineer and Strokefinder designer  Mikael Persson says that " the ultimate goal is to give treatment in the ambulance because so many brain cells are dying each second"


In the  first pair of clinical trials of the prototype,   the device was tested on 45 stroke patients, and the results were compared with CT scans.  The device correctly identified all 19 patients suffering from cranial bleeding. However, it also gave five false positives by indicating that patients might have cranial bleeding when they were actually suffering from a blood clot.


Further trials on patients are planned,  and  NPR reports that the  first ambulance trials will begin in the fall.


Sleep, Learning and Memory 


A June 5, 2014 paper discusses research showing how sleep after learning encourages the growth of dendritic spines, those connections to other brain cells that facilitate the passage of information across synapses.




The findings, in mice, provide important physical evidence in support of the hypothesis that

sleep helps consolidate and strengthen new memories, and show for the first time how learning and sleep cause physical changes in the motor cortex, a brain region responsible for voluntary movements.


Says senior investigator Wen-Biao Gan, PhD, professor of neuroscience and physiology and a member of the Skirball Institute of Biomolecular Medicine at NYU Langone Medical Center: 


We've known for a long time that sleep plays an important role in learning and memory. If you don't sleep well you won't learn well  . . .    But what's the underlying physical mechanism responsible for this phenomenon? Here we've shown how sleep helps neurons form very specific connections on dendritic branches that may facilitate long-term memory. We also show how different types of learning form synapses on different branches of the same neurons, suggesting that learning causes very specific structural changes in the brain.  

Aphasia Camp, Ontario, CA  September 19 - 21, 2014

The March of Dimes is offering its Aphasia Camp, scheduled for September 19 - 21, 2014.




The program is offered by The March of Dimes, in partnership with the Adult Recreation Therapy Centre.


Come join for a recreational and relaxing weekend camp retreat for people with aphasia and friends, because "Life is Larger Than Aphasia". 

Location of the Aphasia Camp:

Tim Horton Onondaga Farms

RR#2 Glen Morris Road East

St. George, Ontario
Robin Tavistock Award 2014  will be presented to Professor Linda Worrall



Editor's Note:

Paul Berger, from www.strokesurvivor.com and a member of the aphasiatoolbox staff of presenters, had the opportunity to meet Dr. Worrall during his recent trip to Australia.   To hear more about his trip, contact Paul about joining his Aphasia Communication Cafe at information@aphasiatoolbox.com.


Professor Linda Worrall is the 2014 recipient of The Robin Tavistock Award. Linda  is the Director of The Centre for Clinical Research Excellence (CCRE) in Aphasia Rehabilitation and she is based at The University of Queensland.  


Linda is recognized as being a "passionate and exceptional teacher, galvanising and inspiring the next generation of speech pathologists. This, coupled with her rigorous, ground-breaking client centred research has established her as a leader in the field of aphasia, and someone who has a earned the respect from her peers not only in Australia, but internationally". 


About The Tavistock Trust for Aphasia

The Tavistock Trust for Aphasia is the only grant-making trust in the United Kingdom that focuses solely on aphasia.  
For further information, please visit the Trust's website.  
Life is not a race


Through The Journey of Life
by Author Unknown   


Do not undermine your worth by comparing yourself with others. It is because we are different that each of us is special.

Do not set your goals by what other people deem important. Only you know what is best for you. 
Do not take for granted the things closest to your heart. Cling to them as you would your life, for without them, life is meaningless. 
Do not let your life slip through your fingers by living in the past nor for the future.  By living your life one day at a time, you live all of the days of your life.

Do not give up when you still have something to give. Nothing is really over until the moment you stop trying. 
It is a fragile thread that binds us to each other.

Do not be afraid to encounter risks. It is by taking chances that we learn how to be brave. 


Do not shut love out of your life by saying it is impossible to find. The quickest way to receive love is to give love. The fastest way to lose love is too hold it too tightly. In addition, the best way to keep love is to give it wings.

Do not dismiss your dreams. To be without dreams is to be without hope. To be without hope is to be without purpose.

Do not run through life so fast that you forget not only where you have been, but also where you are going.

Life is not a race, but a journey to be savored each step of the way

Photo of the Month -  Aphasia


Courtesy of the Nova Scotia Aphasia Association

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 June 29, 2014
"Finally, when finding words is hard, finding help is easy . . . with BCAT." Contact us to find out how you can become a person recovering from aphasia.
This is Sharon Rennhack, the  chief  editor for the aphasiatoolbox newsletter.  
This month we are offering a Special Edition, focusing on stroke in young adults  (resulting in aphasia).   
These are some of the highlights in this month's edition:
>  I review the research documenting the increase in stroke
 in young adults; 


>  Bill Connors discusses the challenges and opportunities regarding young people recovering from aphasia;


>  We review some of the newer Facebook groups targeting young adults who are stroke/aphasia survivors.


Please share this edition with a young person.


Sharon Rennhack

Chief Editor 
VIDEO:  Master Clinician Bill Connors discusses Aphasia in young adults 


Editor's Note:

In this video, Master Clinician Bill Connors  discusses aphasia in young people focusing on the implications for:


caregivers and family members;

speech/language pathologists;

young people recovering from aphasia (YPRA) .


Bill Connors Interview:  Young People recovering from Aphasia
Interview with Bill Connors: Young People recovering from Aphasia


If you have questions about this video or if you want to receive Bill's powerpoint presentation, please contact us or  call  us at 724-494-2534.  

Stroke/Aphasia in Young Adults 


Editor's Note:


Stroke and Aphasia have a new face.


Stroke is a leading cause of disability, cognitive impairment, and death in the United States and accounts for 1.7% of national health expenditures. [1] On average, every 40 seconds, someone in the United States has a stroke; but,  it's no longer elderly people 65 and over;  according to articles in The Washington Post  [2] and the journal  Circulation [3]:

Approximately 10  - 15 percent of the nearly 800,000 strokes that Americans suffer each year occur in people younger than 50.


If these estimates are correct, an estimated 80,000 to 120,000 young people yearly may have aphasia as a result of stroke.


A 2012 article from The Lancet  [4]  shows  that "evidence is emerging from the USA that, while the incidence of stroke is falling in elderly people, there is a shift towards an earlier age at stroke onset and that incidence of stroke is rising in young adults. Stroke in young people has an enormous  effect on the overall burden of stroke because of greater loss of productivity and higher health-care expenses over time; thus, urgent action is needed to address this alarming trend. 

Burden indeed;  a  recent study [5] found that 12 percent of survivors age 50 and younger failed to recover their independence after 10 years.


> Types of Strokes


The most common type of stroke is a blockage, called an ischemic stroke. It happens when a clot blocks an artery that carries blood to the brain. That type of stroke may be caused by cerebral thrombosis, in a main artery of the brain. 


It could also happen if a cerebral embolism, a blockage caused by a blood clot, air bubble or fat globule or embolism, forms in a blood vessel somewhere else in the body and is then carried through the bloodstream and into the brain.


Finally, the cause could also be a blockage in the tiny blood vessels deep within the brain, called lacunar stroke.


Approximately 42% of strokes in young adults are ischemic strokes.


The second type of stroke is a bleed, occurring when a blood vessel bursts, causing a hemorrhage inside the brain, called an  hemorrhagic stroke. It may be caused by intracerebral hemorrhaging, when a blood vessel bursts within the brain or a subarachnoid hemorrhage, when a blood vessel on the surface of the brain bleeds into the area between the brain and the skull in subarachnoid space.


Hemorrhagic stroke, the deadliest form that is mainly caused by high blood pressure, is the most common type of stroke in young adults. Hemorrhagic strokes represent 20% of all strokes in the United States and young people account for many of these.


Intracranial hemorrhage accounts for 41% and subarachnoid hemorrhage accounts for 17% of these strokes in young adults.


> Stroke Risk Factors in Young People


A study by Ji et al [5] "shows the contemporary profile of ischemic stroke in young adults admitted to a tertiary stroke center".  The study said:


The causes are heterogeneous; however, young adults have a high rate of traditional vascular risk factors. There were high incidence rates of hypertension (20%), diabetes mellitus (11%), dyslipidemia (38%), and smoking (34%). Relevant abnormalities were  shown on cerebral angiography in 136 of 203 patients, on cardiac ultrasonography in      100 of 195, on Holter monitoring in 2 of 192; and on hypercoagulable panel in 30 of  189 patients.


Multiple infarcts were observed in 31% and were more prevalent in individuals  younger than age 35 years. Relevant arterial lesions were frequently detected in the middle cerebral artery (23%), internal carotid artery (13%), and vertebrobasilar     arteries (13%).  Cardioembolic stroke occurred in 47% (including 17% with isolated patent foramen     ovale), and 11% had undetermined stroke etiology. 


The Lancet concurs  [4]:


It  is  a "change in the demographics of causal risk factors for stroke: increasing  obesity in  . . . young adults caused by sedentary lifestyles and unhealthy diets . . . [translating] into premature vascular disease, including stroke, through raised blood   pressure and diabetes.


The journal goes on to state:  


According to the National Health and Nutritional Health Survey, prevalence of stroke  risk factors has almost doubled in recent years among adults aged 20-54 in the USA: prevalence of diabetes increased from 2% in 1988-94 to 4% in 2005-06; high    cholesterol from 11% to 21%; and obesity from 19% to 34%. Increased cigarette         smoking and use of recreational drugs, and decreased access to health care among   those at highest risk, such as ethnic minorities and poorly educated individuals, might  also play a part.


The age factor  may also work against young people when they show up in emergency rooms. A  recent study from Johns Hopkins University suggests that ER doctors may be up to 30 percent more likely to overlook signs of stroke in women and minorities. And for patients under 45, the odds are much greater than for those who are older.  [ 7]


Dr. David Newman-Toker,  a neurologist at Johns Hopkins and the study's lead author,  used federal health care data  and  tracked the discharge records and emergency visits of nearly 200,000 stroke patients in more than 1,000 hospitals.


Says Newman-Toker:  


Younger people are less likely to have a stroke, but when they have that stroke, they're much more likely to be missed. 


Nearly 13 percent of people admitted to the hospital with a stroke diagnosis had visited the emergency room up to 30 days earlier with complaints of headaches and dizziness, which . . . may have indicated that they either were having a stroke with atypical symptoms or were having a minor attack that acted as a precursor to a more severe stroke.


But during the initial visit, these patients either were diagnosed with benign conditions like inner ear infection or migraine, or were sent home with no diagnosis at all. 


Roughly a quarter of these patients returned less than 48 hours later in the midst of an obvious stroke.




1. AHA/ASA Policy Statement: Forecasting the Future of Stroke in the United States, Stroke.

2013; 44: 2361-2375


2. Heart Disease and Stroke Statistics-2014 Update, Circulation, "Chapter 14 - Stroke",  2014; 129: e28-e292


3.  Strokes long on the decline among the elderly are rising among younger adults, Washington Post, June 16, 2014


4. Challenging age-old ideas about stroke, Lancet.com/neurology Vol 11 December 2012


5.  Early strokes leave many young adults with long-lasting disability,  Science Daily, February 27, 2014         

6. Ji,  R et al,  JAMA Neurol. 2013 Jan;70(1):51-7


7.  Emergency Docs More Likely To Miss Signs Of Stroke In The Young,  NPR,  April 05, 2014  

Upcoming Seminars with Bill Connors


Master Clinician Bill Connors will offer the following one-day seminar through Motivationsceu.com: 


Aphasia-Apraxia Therapy: Exploiting Neuroplasticity 

This 1-day seminar will present innovative treatment protocols and technology-based tools that enhance clinical skills, assist in the integration of evidence and patient values into aphasia rehabilitation, and save clinician preparation time. Techniques and tools that optimize exploitation of neuroplasticity to maximize aphasia recovery will be featured. Participants will observe demonstrations of and be involved in aphasia and apraxia treatment including live telepractice sessions and video recordings that utilize the comprehensive Brain Compatible Aphasia Treatment Program. 

The session will be highly interactive and will address the synergies between the treatment of adult and childhood speech and language disorders.   


Dates:                           Location:


July 19, 2014               San Antonio, TX 

August, 15, 2014         Dallas, TX

Visit www.motivationsceu.com for more information and to register. 

The Aphasia Center of Innovative Treatment, Inc | | bill@aphasiatoolbox.com | http://www.aphasiatoolbox.com
800 Vinial Street, B408
Pittsburgh, PA 15212

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