We are opening up this “front page” of The Aphasia Hope Foundation’s website to feature your experiences as a Survivor, Caregiver or Therapist; experiences that have given you Hope, that you could share with others. We would love to hear from you regarding different therapies, what worked, what didn’t work, exercises that can be done at home, etc. Most of all this is a place for you to share with each other and give hope and encouragement to others that find themselves in similar situations due to stroke, TBI, or illness (such as PPA). Please email your submissions to sandycaudell@aphasiahope.org .

For an article on the experience of one caregiver after 18 years, Click on EXPERIENCE

Here is a highlight of a recent question for our Professional for the Month and the Pro’s reply:

Question from “aphasiawife” Regarding “Window of Recovery:
Is there a window of recovery from anomic aphasia after a stroke? Can any more progress be made through therapy though the stroke happened 10 years ago? Thanks.

Our Professional of the Month answers:

Absolutely!!!! There has been so much research in the last 5-10 years focusing on what we now know about about brain and it’s plasticity! It’s exciting information for individuals who were told that they would make all of the progress that they ever would make in the first 6 months or year after their stroke/insult. It’s just not true. The brain can continue to change and new pathways can be forged… it does take work, but if you do it right, the work will be stimulating, salient and fun!

First of all, check out the work that is out there written by people that have gone through this…there are several wonderful books from My Stroke of Insight (Jill Bolte Taylor), The Miracle Mind (Sonya’s Story), Healing Into Possibility (Allison Shapiro), etc. There are so many wonderful testimonials for individuals to realize they are not alone and that there is much to be done.

Secondly, understand the main tenants of recovery and new pathways are: 1) Opportunities: an individual needs lots of opportunities to communicate; fun, social, educational, vocational… the more opportunities, the more practice! 2) Challenge: the brain changes, and does what we teach it to do… the more we do for the person with aphasia, the ”easier” it may seem, but it actually denies the individual that communicative pressure they need. Instead of filling in, teach those around you to ”cue” the person… give them direction vs. the answer. 3) Support: This can be found with groups that have others that have aphasia,… a local university may have a program, or graduate interns that are looking for clinical experience, … look for aphasia groups and aphasia centers in your area for purposeful, engaging and satisfying experiences.

Let me know if I can help you further.

Maura

Many people, Survivors, Caregivers, Students, etc. have been posting questions and answers in our forums/message boards section. See if someone is having the same issue you are or offer your advice to help someone else out! Go to AHF Forums!

When a loved one suffers a stroke or acquired brain injury that results in aphasia, family members often want to assist in the recovery process. Questions regarding home activities that can assist with language and communication recovery frequently arise. However, it can be difficult for families to determine what types of activities would be beneficial and helpful.

Using the Life Participation Approach to Aphasia persons with aphasia (PWA) can still have meaningful life experiences despite having communication impairments. The Life Participation Approach focuses on the “real-life goals of people affected by aphasia” and an emphasizes “re-engagement in life by strengthening daily participation in activities of choice.” Today, there are many resources that are available to help support the long-term communication needs of PWA. A speech-language pathologist is often the best resource for obtaining this type of information, as it is not a “one-size-fits-all” paradigm. No two persons with aphasia are exactly alike in terms of their abilities and their communication needs. Therefore, seeking out input from a speech-language pathologist is highly recommended.

Below are just a few examples of various tasks and activities that have been modified to facilitate the PWA’s participation and communication. Using these methods, in addition to speech therapy, can help the PWA have successful communication in all aspects of their everyday life.

1. Add Speech Therapy to Everyday Tasks

Preparing Lists and Grocery Shopping
Have the PWA copy the names of needed items from the grocery store flyer. See if they can try to say the words, or imitate a family member saying the words. While at the grocery store, see if they can locate items from the list. You could also ask yes/no questions regarding the list. For example, “Do we need milk?” Reading the Newspaper
Ask them to locate various sections of the newspaper (i.e. movie listings, sports section) to work on reading and listening skills. Review the weather forecast, as weather picture symbols are often listed for the local area, which can help with their understanding. Ask yes/no questions, such as, “Is it going to be sunny today?”, or “Is it going to snow today?”

Looking at Family Photos
Reminisce over family photos. Ask the PWA questions about the photos. They can be yes/no questions, either spoken or written down, or consider asking and writing a more open-ended question and providing the PWA possible answer choices. For example, speak and write: “What was your favorite activity at Disney World?” Then, write down and verbally review possible answers, such as, “a) seeing the castle; b) spending time with family; c) going on the rides; d) enjoying the nice weather; e) all of the above”. This provides the PWA with opportunities to express an opinion or make a comment.

2. Use Specialized Workbooks and Software

Aphasia Workbooks
There are several companies that sell workbooks and other products to address speech and language difficulties. Linguisystems and The Speech Bin are just two examples. For additional options, a simple internet search for “Aphasia workbooks” will yield additional results.

Aphasia Computer Programs
Parrot Software offers a monthly internet subscription program for personal computers, as well as iPads. There are a variety of computer programs to address speech and language difficulties. Tasks can be modified for different levels of ability with corrective feedback provided.
Bungalow Software sells computer software programs with numerous options that are specifically designed to meet the needs of persons with aphasia and other communication difficulties. There are different levels of difficulty for many of the tasks with corrective feedback provided.
3. Take Advantage of Books and Movies Adapted for Persons with Aphasia

Aphasia-Friendly Book Club
The Aphasia Center of California has created support materials for a number of popular books such as, “The Greatest Generation Speaks” by Tom Brokaw, and “Tuesdays with Morrie” by Mitch Albom. These materials can be downloaded directly from the website for a fee. Fees vary, depending on the length of the book. The materials include chapter summaries that have been simplified, along with worksheets to stimulate discussion. Although intended for an aphasia book club, the materials can be utilized on an individual with basis with family members’ support. A speech-language pathologist can guide family members with how to best utilize these materials at home. This is a great way to continue an individual’s love of reading after a stroke.

Aphasia and the Movies
Speaking of Aphasia is an aphasia therapy practice in New Jersey that is heavily focused on the “life participation approach.” They offer “Aphasia Film Forum” support materials for internet download at a nominal fee. Movie titles include, “The Devil Wears Prada” with Meryl Streep and “The Pursuit of Happyness” with Will Smith. A speech-language pathologist can guide family members with how to best utilize these materials at home.

By: Kim Winter MA CCC-SLP, Speech-Language Pathologist at Hospital for Special Care
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Each year in June, National Stroke Association brings the stroke community together to raise our collective voice in the halls of Congress on issues important to the stroke community. This action shows our numbers and our passion for preventing stroke and lessening its impact on the lives of today’s and future stroke survivors.Take action today and make your voice heard in the halls of Congress on stroke-related issues and legislation. Last year, network members from every state sent more than 4,450 messages to Congress. Help us beat that number by sending messages to your members of Congress today!

We’re focusing on five actions Congress can take right now to improve the lives of stroke survivors, caregivers, family members and the healthcare professionals who care for them. These include:

Repeal the caps on Medicare therapy services
Help stroke survivors return to work
Support advancements in stroke diagnosis, treatment and recovery
Fund the BRAIN Initiative
Learn more about stroke by joining a stroke- or neurology-related group
Learn more about these actions and urge your members of Congress to take one or more of them today!

Take Action

NIA has launched a new blog, specifically aimed at the research community, as well as a broader audience interested in policies and priorities in aging research. NIA hopes Inside NIA: A Blog for Researchers will provide a lively forum on topics of interest to us all.

The reason they chose a blog is its interactive nature. Its success depends on participation, and NIH is reaching out to you, as friends and colleagues in the aging community, to help get the conversation off to a strong start.

They anticipate blog posts will include:
the latest on the Institute’s research priorities
candid information about the budget and sequestration
tips about successful grant applications
insight into peer review
news on training and programs for early career researchers
NIH hopes the blog will be informative, timely, and yes, maybe even a little provocative. Their goal is to encourage a dialogue with you and your research colleagues and the larger network involved in research on aging. We know it will take time before reading Inside NIA becomes part of your regular routine. There are three quick actions you can take to move forward:

Share. What do you think? Comment on the blog.
Subscribe. It’s easy and ensures you’ll be notified weekly, when a new post is available. Join the list by entering your email address in the Subscribe box on the blog page.
Support. Encourage your peers, members, Board, and others to subscribe. Send blog posts to people you think might be interested.

Sign up! .

10 common misconceptions about stroke – from Barrow Neurological Institute:

Strokes aren’t preventable. Fact: Approximately 80 percent of strokes can be prevented with healthy lifestyle changes.
Strokes are painful. Fact: The symptoms that often lead to stroke, such as dizziness or a loss of balance, do not cause sudden pain.

Smoking doesn’t cause a stroke. Fact: Smoking is a large risk factor for stroke.

Strokes are rare. Fact: Every 45 seconds, someone in United States has a stroke and, on average, one American dies from a stroke every 4 minutes.

Drugs and alcohol use don’t increase the risk of stroke. Fact: Substance abuse and excessive alcohol consumption are leading indicators for stroke among the young.

Misdiagnosis is rare. Fact: An estimated 1 in 7 strokes in young adults is misdiagnosed.

Strokes can’t be treated. Fact: Patients who receive treatment for stroke within 4.5 hours of their first symptoms tend to have better outcomes.

It’s all in the genes. Fact: Although family history does play a role in the risk of stroke, the hereditary conditions that increase stroke risk can often be controlled.

High blood pressure and cholesterol should not be taken seriously. Fact: High blood pressure and high cholesterol contribute to stroke.

A stroke is a heart condition. Fact: Although many believe a stroke occurs in the heart, it actually takes place in the brain

Read more

Canadians unaware of stroke rehab improvements, By Lynn Desjardins on Wednesday 12 June, 2013

Most Canadians don’t have a good understanding of stroke and 20 per cent mistakenly believe it is almost always fatal, according to the Heart and Stroke Foundation. They often don’t realize that research is dramatically improving the outlook for rehabilitation.

Stroke is a worldwide issue. As young people become more sedentary and eat foods containing high levels of sugar, salt and fat, they increase their chances of getting the “double whammy” of stroke and dementia at a much earlier age than their parents or grandparents, says Dale Corbett, professor of neurosciences at the University of Ottawa and head of the Heart and Stroke Foundation’s Centre for Stroke Recovery.

Popular misconception holds that there is not much one can do after having a stroke. But if patients get to hospital quickly they can get drugs which will break down blood clots and dramatically limit the damage they cause.

Science improving rehab

It’s not true that after a few months of rehabilitation there can be no more improvements in a stroke survivor’s condition. Science is moving ahead rapidly in finding ways to rewire the brain to help stroke survivors regain skills they have lost in speech and mobility.

“We’re…into this exciting new area of brain repair and realizing that the brain is highly plastic,” said Corbett, “it can reorganize and rewire. And this is all a relatively new science.

“What we’re finding is that types of rehabilitation—things like exercise and other kinds of interventions—have a large impact on the brain’s ability to help heal itself after stroke…Now what we’re finding is that things like the timing or the intensity or the number of repetitions of rehabilitation makes a big difference in the amount of recovery. So science is starting to lead rehabilitation.”

Families can improve rehabilitation

Families can have an impact on a stroke survivor’s recovery, said Corbett. They can support, encourage, and even push the survivor to work hard on rehabilitation. He cited the example of one parent who built exercise equipment especially adapted to his child’s needs.

“Stroke recovery is a journey that can continue for years or a lifetime,” reads the 2013 report by the Heart and Stroke Foundation. It calls for more funding for research for the ever-growing problem of stroke.

Facts from the Heart and Stroke Foundation:

50,000 strokes occur in Canada each year—one every 10 minutes

315,000 Canadians are living with the effects of stroke.

Stroke costs the Canadian economy $3.6 billion a year.

Stroke is the leading cause of death and disability among adults.

Symptoms of stroke:

Weakness, numbness or tingling in face, arms or legs, especially on one side of the body.
Trouble speaking or understanding speech.
Sudden blurring, double vision or loss of vision.
Sudden severe headache.
Dizziness, loss of balance.
If you have these symptoms go to a hospital immediately.

Read and listen to Video.

This article was posted in Advance Stroke victims affected with loss of speech caused by Broca’s aphasia have been shown to speak fluidly through the use of a process called “speech entrainment” developed by researchers at the University of South Carolina’s Arnold School of Public Health.

Aphasia, a severe communication problem caused by damage to the brain’s left hemisphere and characterized by halting speech, occurs in about one-third of people who have a stroke and affects personal and professional relationships. Using the speech entrainment technique, which involves mimicking other, patients showed significant improvement in their ability to speak.

The results of the study were published in the neurology journal Brain.

“This is the first time that we have seen people with Broca’s aphasia speak in fluent sentences,” said Julius Fridriksson, Ph.D., the study’s lead researcher and a professor with the Department of Communication Sciences and Disorders at the Arnold School. “It is a small study that gives us an understanding of how the brain functions after a stroke, and it offers hope for thousands of people who suffer strokes each year.”

In Fridriksson’s study, 13 patients completed three separate behavioral tasks that were used to understand the effects of speech entrainment on speech production. During the “speech entrainment-audio visual” portion of the study, participants attempted to mimic a speaker in real-time whose mouth was made visible on the 3.5-inch screen of an iPod Touch and whose speech was heard via headphones.

The “speech entrainment-audio only” condition involved real-time mimicking speech presented via headphones with the screen of the iPod blank. During a spontaneous speech condition, patients spoke about a given topic without external aid.

Each patient also completed a 3-week training phase where they practiced speech every day with the aid of speech entrainment. Overall, the training resulted in improved spontaneous speech production, something that is relatively rare in this population. Ultimately the patients were able to produce a short script about their stroke to tell to other people.
Neuroimaging results from the patient subjects have also given Fridriksson and his research team a greater understanding of the mechanism involved in speech entrainment.

“Preliminary results suggest that training with speech entrainment improves speech production in Broca’s aphasia, providing a potential therapeutic method for a disorder that has been shown to be particularly resistant to treatment,” Fridriksson said.

Read, email or print this article.

If you could stand in someone else’s shoes… Hear what they hear. See what they see. Feel what they feel. Would you treat them differently?

These words end this incredibly beautiful video produced by the Cleveland Clinic, a nonprofit medical center that integrates clinical and hospital care with research and education. We spend quite a bit of effort here at On Being focusing on the sound of the human voice and how each guest adds to our collective discussion. We attempt to draw out the best of their stories and experiences in all its messiness and glory. This video speaks to each person’s complexity, the stories that go unsaid but float just beneath the surface.

Titled “Empathy,” this video was presented by the health care organization’s CEO Toby Cosgrove at his annual State of the Clinic address on February 27, 2013. And it gets at a point that immunologist Esther Sternberg explores in her work and personal life: how new knowledge about the physical spaces of our lives can stress us, make us sick, or help us be well and connect with others.

Check this article and Video out by clicking on Empathy .

By Wendy Corona
ATLANTA — Doctors are referring to the Southeast as the Stroke Belt, and they’ve been seeing a rise in the number of younger stroke victims in the region.

While the decrease in age may be a surprise to many, youth can be an advantage in survival and rehabilitation.

Amanda Parks’ Facebook page chronicles her journey from stroke victim to Shepherd Center patient. A mother of two, Parks was only 37 when the stroke struck March 2.

“My daughter asked me, ‘Mom, what’s wrong? You can only move half your body,’” said Parks.

Dr. Ford Vox, a staff physiatrist at the Shepherd Center said, “She would’ve died had she not gone to the hospital when she did. It was the early treatments that saved her life.”

Part of Parks’ skull had to be removed to reduce swelling on the right side of her brain. Parks wears a helmet now to protect her skull.

Doctors warn that stroke knows no age.

“The No. 1 most important factor that everyone needs to know is what their blood pressure is,” said Vox.

The average age range of a stroke rehab patient is between 60 – 75. At Shepherd Center, the average stroke patient is in their 40s.

With her army of support by her side, Amanda graduated from rehab to a new reality.

“They tend to be these patients on the younger side that we’re trying to focus on and offer the most intensive therapy to because we know that there are many more decades ahead,” said Dr. Vox.

READ full article.

Is striving for 100 percent a lofty goal or the right thing to do? Learn how data can drive care and get tips and tools for performance improvement in this exclusive webinar by National Stroke Association. Jan Jahnel and Teresa Swanson-Devlin, OSF Saint Francis Medical Center, and Wende Fedder, Alexian Brothers Health System, will lead the discussion.

Contact Linda Kuhrt to register.

5 Calls to Action for Congress
Posted by Nancy Coulter-Parker Jun 03 2013

1. Co-sponsor the Medicare Access to Rehabilitation Services Act (HR 713 and S 367): HR 713 (Rep. Gerlach) and S 367 (Sen. Cardin) would permanently repeal the Medicare therapy caps. Medicare currently caps the amount of money that can be spent per patient, per year on outpatient therapy services. There are two caps — one on physical and speech therapy combined and another for occupational therapy services. As two-thirds of all strokes happen to people 65 years or older, many stroke survivors rely on these services for recovery. Yet, it is estimated that 640,000 Medicare beneficiaries exceed these caps annually. As recovery treatment is not one size fits all, this cap can detrimentally cut treatment off at a time when stroke survivors are trying to recover to their fullest potential.

2. Support National Institutes of Health (NIH) Funding: In order to continue to fight to reduce the incidence and impact of stroke, new advancements must be pursued. We support funding levels at $32 billion for NIH and $1.7 billion for NINDS. Research conducted by the National Institute of Neurological Disorders and Stroke (NINDS) has helped to make significant advances in stroke diagnosis, treatment, and recovery, including establishing the only FDA-approved treatment for acute stroke care, tPA. NINDS research has saved lives and reduced the impact of stroke on survivors. In addition, NIH and NINDS research has contributed to the economy by supporting 432,000 jobs in 2011 in the U.S.

3. Co-sponsor Return-to-Work Legislation: Legislation recently introduced in the Senate (Sen. Kirk and Sen. Tim Johnson) calls on the Department of Labor, via the Job Accommodation Network (JAN), to promote awareness and assistance among employers to enable stroke survivors to return to work. For younger stroke survivors, returning to work can be a central part to recovery. JAN is a free service of the U.S. Department of Labor for both employees and employers. It provides tools and guidance on issues related to disability and employment issues.

4. Support funding for the BRAIN Initiative: We support the BRAIN Initiative and making sure the program is funded in the upcoming fiscal year (FY14). The Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) Initiative is designed to “revolutionize our understanding of the human brain” so researchers can “find new ways to treat, cure, and event prevent brain disorders.” An expanded and deeper understanding of the brain could significantly spur advancements in stroke prevention, diagnosis, treatment, and recovery.

5. Join a Stroke- or Neurology-related Group. There are a number of congressional member organizations that have a partial focus on stroke. These include: Congressional Neurosciences Caucus (contact Rep. Blumenauer or Rep. McMorris Rodgers); Congressional Heart and Stroke Coalition (contact Rep. Capps or Rep. Chris Smith); and Congressional Brain Injury Task Force (contact Rep. Pascrell or Rep. Rooney).

Read the complete article by clicking on Stroke Smart.