Congress has less than two months to act before some stroke survivors are, once again, at risk of losing access to critical speech, physical and occupational therapy services. Contact Congress today and ask them to preserve access to therapy services above the annual cap for Medicare beneficiaries.

Under current Medicare rules, beneficiaries can receive up to $1,880 per year of speech and physical therapy (combined) and another $1,880 for occupational therapy provided in non-hospital, outpatient settings (in 2012). Beneficiaries who require more services can use an exceptions process to obtain them before the start of the next year. However, this exceptions process is set to expire on February 29, 2012.

Congress extended this deadline for two months (from December 31, 2011 to the end of February 2012) through legislation passed at the eleventh hour just before the end of last year. However, this only ensures that stroke survivors covered by Medicare have access to additional therapy services until February 29. Congress must extend, or reauthorize, the exceptions process in order for beneficiaries to take advantage of it beyond this date. If Congress fails to act and the exceptions process expires, Medicare will only pay for rehabilitation services up to this capped amount—even if additional rehabilitation services are considered medically necessary by a healthcare professional.

You can help ensure that stroke survivors covered by Medicare have access to an adequate level of rehabilitation services. Send a message to your members of Congress urging them to preserve the exceptions process. Take action today! Even if you’ve already contacted your members of Congress about this issue, they need to hear from you again to ensure they take action on this issue by February 29.

Once you’ve sent your messages, follow up with your members of Congress to ensure they take action on your request. The Stroke Advocacy Network can help you identify your members of Congress and find phone numbers for their offices (local or in Washington, D.C.). Following up with a phone call will ensure that your request is not only heard but acted on as well.

Visit their website: www.stroke.org .

In response to the flood of calls, texts, postings and emails we have received from people in the aphasia community in the US and around the world, the National Aphasia Association would like to offer information about this condition to the general public in an effort to correct an error of omission in ABC’s coverage of Congresswoman Gabrielle Giffords’ recovery.

First, we would like to express our heartfelt congratulations to Gabby for her recovery so far and offer her, Mark Kelly and their family any ongoing support they might need as they face the challenge of aphasia.
While ABC did an accurate and comprehensive job of explaining aphasia, the program inexplicably never mentioned Gabby’s condition by name. It is aphasia – the inability to read, write, speak or communicate after a stroke or other sudden traumatic brain injury, such as the one Gabby tragically experienced.

Many people with aphasia, their families, friends and caregivers, were very disappointed and frustrated by this omission. Eagerly, they watched that special Monday night edition of 20/20, hoping that finally, a greater awareness and understanding for aphasia would be realized. The general public would finally hear the word aphasia and begin to understand the condition. Unfortunately, the hour-long program never used the word aphasia once, which added to the pain and frustration of the over 1 million people estimated to have aphasia.

It was only during the subsequent Nightline program hours later that night, when Bob Woodruff used the word aphasia when he talked about his struggle with the condition and his understanding and compassion for Gabby’s difficult, but hopeful journey.

We urge ABC and other news media to use the word APHASIA when reporting on Gabby Giffords and other people with the condition. This will help raise awareness and understanding.

Too often, people with aphasia are mistaken for being mentally incapacitated or being under the influence. This is not true. People with aphasia maintain their intellect completely. They have a communication disorder that makes it difficult for them to express themselves and understand language. It is estimated that there are over 200,000 new cases of aphasia every year.

At the National Aphasia Association (a nonprofit organization), we offer free and low-cost support for people with aphasia and their families including:

NAA Hotline (800-922-4622) helps over 4,000 families a year.

www.aphasia.org receives over 12,000 hits per month, helping an estimated 300,000 families a year.

NAA National Registry links to over 440 aphasia US support groups and 210 state representatives.

Emergency Responders Training Program educates first responders how to recognize aphasia and communicate with people who have the condition

Aphasia Friendly Business Program trains businesses and their employees how to interact with customers who have aphasia.

The Aphasia Handbook: A Guide for Stroke and Brain Injury Survivors and Their Families

Aphasia can occur in people of all ages, nationalities, socio-economic backgrounds and equally among men and women. Understanding, patience and a few commonsense strategies will help family, friends, caregivers and the public communicate with people with aphasia:

1) Have the person’s attention before you speak.
2) Minimize or eliminate background noise (TV, radio, other people).
3) Keep your own voice at a normal level.
4) Keep communication simple, but adult.
5) Give them time to speak, resist the urge to finish sentences or
offer words.
6) Communicate with drawings, gestures, writing and facial
expressions.
7) Confirm that you are communicating successfully with “yes” and
“no” questions.
Praise all attempts to speak and downplay any errors.
9) Engage in normal activities whenever possible.
10) Encourage independence, avoid being overprotective.

For more information, media outlets and the public can contact the National Aphasia Association at (800) 922-4622 or (212) 267-2814.

Best wishes to everyone in the aphasia community,

Ellayne S. Ganzfried, M.S., CCC-SLP
ASHA Fellow
Executive Director

Barbara C. Martin
President- Board of Directors

The National Stroke Association is excited to announce their 2011 Raising Awareness in Stroke Excellence (RAISE) Awards winners in the coming days and they wanted to thank everyone who sent in nominations to be considered for the inaugural year. The winners are excited to have their activities highlighted and they are honored to showcase them.

They had a tremendous response to the call for nominations and thank you for sharing these truly amazing efforts being made across the country. It is clear that those of you invested in raising awareness—no matter your reach or resources—are inspirations that deserve support and recognition.

While they are only able to honor a few winners this year, they hope you will join them as they work to establish a devoted and organized community engaged for the long term to raise awareness. You are the reasons why people everywhere are becoming better armed to recognize and respond to stroke.

Watch in the coming days as the 2011 RAISE Awards winners are revealed. The National Stroke Association hopes you share their successes—and your own—with loved ones and others who might be inspired to become a stroke champion

A student from University of Cincinnati is working on a project designing rehabilitation devices for people suffering from aphasia. Adrienne is currently seeking more information, and has created a survey with questions for caretaker of people with aphasia. If you would like to participate, and/or pass it along to those that would be willing to help, it would deeply appreciate it.

Click Here for survey .

Adrienne Pearson’s information:

(248) 225-7416
pearsoar@mail.uc.edu

An article posted in STROKENET, By David Wasielewski

Many stroke survivors need to deal with changes in their memory following a stroke. These issues can vary widely and may be difficult for the patient and caregiver to understand. Some individuals will experience a specific inability to remember faces. Some may have problems with numbers and calculations. In my personal experience there is often a decrease in the speed at which I can retrieve a certain memory.

In severe cases survivors can experience a complete inability to form any new memories (short term memory deficit). But how do strokes affect the ability to store and access one’s memories? Neurologists are only just beginning to understand the complexities of what are two very different brain functions, 1) The formation of new memories and 2) The storage of those memories once they are created.
Read full article

“Aphasia: The Movie”
Official Selection, 2011 Feel Good Film Festival
August 13th, 2011, 6:30pm

Cal State LA Student Union Theatre
August 15, 2011, 5:30pm

The short narrative film Aphasia, starring Carl McIntyre, has been announced as an Official Selection of the 2011 Feel Good Film Festival (www.fgff.org) in California during the weekend of August 12-14 at the historic Raleigh Studios in Hollywood. Aphasia will screen on Saturday, August 13, 2011 at 6:30 pm. Tickets can be purchased online: http://www.brownpapertickets.com/event/187692.

If you are unable to make the Film Festival, Cal State LA & Cal State Northridge are sponsoring a screening on Monday, August 15th at 5:30pm at Cal State LA’s Student Union Theatre. Tickets are $17 and can be purchased online: http://aphasiamoviescreening.uticketit.com/.

Aphasia was written by Jim Gloster, a Charlotte, NC director, actor and writer. Gloster wanted to capture the story of his friend, actor Carl McIntyre who suffered a massive stroke in 2005 at just 44 years of age. As a result, McIntyre lives with aphasia, an acquired communication disorder that impairs a person’s ability to process language but does not affect intelligence.

Aphasia is a double dose of reality told in narrative form. Carl stars as himself and portrays his life story in a powerful and nuanced performance. Aphasia uses comedy and pathos to raise awareness about aphasia and provide hope and inspiration to anyone working to overcome obstacles in their lives. The film recounts McIntyre’s first person experience during the stroke, his recovery and his struggle with his inability to communicate.

For more information about the movie, visit http://aphasiathemovie.com.

June 26th, 2011
Rehabilitation Institute of Chicago
Chicago, IL

Conference Highlights Suggested Audience
* Special Interest sessions for families and consumers
* Technology Demontrations
* Recreational, Art, Theatre, Reading, Gardening & Music Activities
* Networking & Discussion *People with aphasia & their families
* Aphasia Community Group Leaders
* Rehabilitation professionals; including speech-language pathologists, physicians, psychologists, social workers, and nurses

Snyder Center for Aphasia Life Enhancement (SCALE) members in
Baltimore, MD prepared “EMPOWER” for the Speaking Out
Conference in June 2010. The theme is “Empowering Others to Live
Well with Aphasia”. The acronym “Empower” is used to represent
seven ways that SCALE members live well with aphasia:
1) Engage yourself in everyday activities
2) Make new friends, community & relationships
3) Practice, patience and be positive
4) Other ways of doing things
5) Working on new interests, teaching others
6) Exercise & recreation
7) Religion…Keep the Faith

For more information, please contact the National Aphasia Association
(800) 922-4622
naa@aphasia.org

Find out more about the conference and register by clicking on Speaking Out

An article posted in The New York Times on May 2, 2011
By JANE E. BRODY

Steve Riedner of Schaumburg, Ill., was a 55-year-old tool-and-die maker, a job that involves difficult mental calculations, and a frequent speaker at community meetings when he found himself increasingly at a loss for words and unable to remember numbers. He even began to have difficulty reading his own written comments.
The neurologist he consulted thought Mr. Riedner had suffered a stroke and for three years treated him with cholesterol-lowering medication. But instead of his language ability stabilizing or improving, as should happen following a stroke, it got worse.
A second neurologist concluded after further testing that Mr. Riedner might have a condition called primary progressive aphasia, or P.P.A., a form of dementia affecting the brain’s language center.
Having seen only one other case in his career, the neurologist referred Mr. Riedner and his wife, Mary Beth, to the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University, whose director, Dr. M. Marsel Mesulam, is perhaps the world’s leading expert on this relatively rare disorder.
P.P.A. is a clinical syndrome, one of several forms of brain disease lost in the medical shadow of their much better known relative Alzheimer’s disease. While hardly as common as Alzheimer’s, P.P.A. is often misdiagnosed, and many patients like Mr. Riedner lose valuable time trying inappropriate and ineffective treatments. Though there is no cure, patients and families can learn ways to minimize the disabilities it causes.
Unlike Alzheimer’s, P.P.A. does not affect memory, at least not initially. It also tends to occur at younger ages, often in the late 50s, and affects twice as many men as women. While symptoms of Alzheimer’s are readily recognized by friends and relatives but not those affected, people with P.P.A. are painfully aware of their struggle to communicate, often long before it is apparent to others.
“Early symptoms are usually very subtle, and patients may be the only ones aware of the problem because they have to work harder to communicate, even though they may not make obvious errors,” said Joseph R. Duffy, head of speech pathology at the Mayo Clinic in Rochester, Minn. “Initially, their communicative errors are like those we all make and may be written off as due to chronic fatigue. But gradually the errors of speech occur with increasing frequency.”
‘Like Being a Parent Again’
The disorder is also commonly misdiagnosed, usually as Alzheimer’s disease or a result of depression or anxiety, Dr. Duffy said in an interview. But while a definitive diagnosis can be made only at autopsy, the results of neuropsychological testing and the patient’s progressive difficulty with communication despite a normal memory can pinpoint P.P.A. as the problem.
As the condition worsens, cognitive difficulties may become apparent. Now seven years into the disorder, Mr. Riedner is having increasing problems performing the tasks of daily living.
“He can no longer punch in the numbers to operate the garage door or the microwave or the remote for the TV,” Mrs. Riedner, his wife of 38 years, said in an interview. “He might open the car window, then not know how to close it. We bought him an iPad, but he can’t learn how to use it.”
New ways of communicating have to be learned, like using gestures or making lists of things to say or do or eat, so that the person can point to them when needed. Unfortunately, sign language doesn’t work because it, too, depends on the region of the brain that is diseased.
“In some ways it’s like being a parent again. He acts in childlike ways sometimes, but he still wants to be himself, an independent adult,” Mrs. Riedner said. “Coping with the problem takes an immense amount of patience on both our parts.”
Mrs. Riedner said the center at Northwestern has been “a lifesaver for us,” a source of support, speech therapy and rehabilitation, help with practical matters like applying for Social Security disability insurance, and tips on how to minimize the inevitable frustrations that can accompany lost language skills.
Dr. Mesulam was the first in modern times to recognize the distinction between P.P.A. and other forms of dementia.
In 1975, as a newly minted neurologist at Beth Israel Hospital in Boston, he became puzzled by a group of patients who seemed to know what they wanted to say but couldn’t string words together in an intelligible sequence. Their communicative problems got progressively worse, although there were no lesions apparent in their brains.
His report in 1982 on six such cases stimulated modern interest in P.P.A. As Dr. Mesulam explained in a retrospective article in the journal Alzheimer Disease and Associated Disorders in the fall of 2007, “The aphasia can interfere with word-finding, object naming, syntax, phonology, morphology, spelling or word comprehension. The progression occurs in the course of years rather than months, and the primary nature of the aphasia is demonstrated by showing that memory for recent events, recognition of familiar faces and objects, reasoning, and basic aspects of comportment are relatively preserved at the initial stages.”
Focus on What Remains
With no therapy available to treat the underlying disease, treatment involves determining which aspects of language are strongest, then providing speech therapy that emphasizes those areas and avoids areas in which patients are weakest, Dr. Mesulam said.
Dr. Duffy said that early intervention is important and should focus on alternative approaches to communication like using a computer, picture icons, or iPhones or iPads that have apps that can talk for a person. Family members are taught how to aid comprehension by communicating simply and clearly: telling patients only one thing at a time, reducing noise and other distractions, and avoiding multitasking.
Family members are also taught coping skills and helped to prepare for the future as the disease progresses, said Darby Morhardt, a social worker at the Northwestern center. “There’s inevitably a grieving process as patients change right before their eyes, but at the same time families want to grasp as much as possible of what remains.”
Patients often are encouraged to develop new hobbies and skills that don’t rely on communication, like woodworking, gardening, fishing, sculpting or painting. Among Northwestern’s patients is one who began breeding pigeons and another who started judging dog races.
Unfortunately, if patients live long enough, other deficits — including those involving memory and cognitive abilities, and motor problems resembling symptoms of Parkinson’s disease — often become apparent, as is now happening to Mr. Riedner.
Like Alzheimer’s disease, P.P.A. shortens life expectancy: The average age of death is 67. Ms. Morhardt said it’s important for patients and their families not to delay getting financial matters in order. Many would be wise to consult a lawyer who specializes in elder law, she said.
This article has been revised to reflect the following correction:
Correction: May 5, 2011
The Personal Health column on Tuesday, about primary progressive aphasia, a type of dementia that affects the brain’s language center, misspelled the hometown of Steve Riedner, who struggled with symptoms for years before the disease was correctly diagnosed. It is Schaumburg, Ill., not Schaumberg.
Read full article by The New York Times

FOR IMMEDIATE RELEASE

Lingraphica Welcomes Jaleel Shujath as Director of Sales and Marketing

Princeton, NJ. – February 21, 2011 – Lingrapghica, Inc., one of the nation’s leading medical devices companies serving persons affected by aphasia, announced today it has hired Jaleel Shujath to the position of Director, Sales and Marketing.

In this role, Mr. Shujath will lead the effort to increase awareness of Lingraphica’s innovative augmentative and alternative communication (AAC) devices among stroke victims and speech language pathologists. He brings several years of experience marketing technology solutions to life sciences researchers, while at Cellomics, GE Healthcare, and PBL InterferonSource.

Located at Lingraphica’s Princeton, New Jersey office, he reports to the CEO Andrew Gomory. “Jaleel’s extensive marketing experience international background, impressive track record at PBL and GE, and his enthusiasm for business challenges and team-based success, will serve him well at Lingraphica,” said Mr. Gomory.

Mr. Shujath is a member of the American Marketing Association. He earned a Bachelor of Science in Biology from Tufts University and an MBA in Marketing from the University of New Haven School of Business
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About Lingraphica, Inc.
Lingraphica-The Aphasia Company™ is the leading provider of speech-generating devices for people whose ability to speak or understand words has been impaired by a stroke or brain injury. With the Lingraphica they can communicate with picture icons that speak words and phrases in a natural human voice, or they can practice speech using videos and language exercises. The Lingraphica is Medicare reimbursable. It is available for a no-obligation trial. For more information call toll-free 1-888-APHASIA (1-888-274-2742) or visit www.aphasia.com.
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An article posted in Stroke Connection Magazine, November/December 2010 issue

A stroke leaves physical and emotional damage – it can also zap energy and cause fatigue. Researchers report that up to 70 percent of survivors experience fatigue that includes overwhelming physical and/or mental tiredness or exhaustion. Symptoms can include difficulty with self control, emotions and memory. How severe and long-lasting fatigues ranges from mild and seldom to overwhelming and constant. Some report feeling tired when they perform a task requiring physical or mental focus. Most report that fatigue occurs without warning and makes it harder to do daily, routine activities as well as social or work activities.

CAUSES:
Because research in this area is limited, we aren’t certain what causes fatigue, but there are several possible causes.

Medical conditions a survivor has, such as heart disease, diabetes, repertory disease, anemia, pre-stroke fatigue or migraines, can contribute to fatigue. That’s because the stroke or medication side affects may worsen fatigue or even mask it. Sleep apnea is also common among survivors. It is reported at high rates among those who report post-stroke fatigue, although no solid relationship has been proven.

Poor heart health may also play a part due to higher levels of exertion. Survivors expend twice as much energy just standing upright and keeping their balance.

Survivors are often concerned about doing some tasks. This stress can increase physical and mental demands and lead to fatigue. Lack of control in movement and walking appear to increase when a person is tired. Anxiety, stress and depression, which are common after stroke, are associated with lack of energy, although research has not determined their specific relationships to post-stroke fatigue.

FIGHTING POST-STROKE FATIGUE
Talk to your family and work with your healthcare team to determine the best plan of care for you. Here are some other tips:
1. Check your prescriptions for potential side effects, including fatigue.
2. Ask for treatment options if you are experiencing anxiety, depression or difficult sleeping. Family support and understanding can also help. Let your family know that post-stroke fatigue is different from fatigue they’ve experienced.
3. Maintain good health to prevent or control other medical conditions, such as heart disease or diabetes, which can affect your energy level. Currently there is no prescription specifically for tiredness, although many related symptoms can be treated.
4. Talk to your physical therapist to understand fitness balance disorders, uncoordinated movement and walking related to fatigue. He or she can create an exercise program to increase your endurance. Balance and coordination exercises will help you perform tasks with less energy, increase our confidence and decrease your anxiety.
5. Try to schedule demanding physical or mental activities throughout the day or week. That way you’ll plan to take rest breaks before you feel tired and break up the concentrated periods of time that you’re exerting yourself.
6. Consider modifying your home and work environment to make them more efficient. Use assistive technology when possible.

Physical therapists can help patients reduce post-stroke fatigue. In most states, patients can make an appointment directly with a physical therapist, without a physician referral. Learn more about conditions physical therapists can treat and find a physical therapist in your area at www.moveforwardpt.com

Read this and other great articles by signing up for Stroke Connection Magazine a free publication, by clicking on Stroke Connection Magazine