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

An article By Randy Stark published in the Stroke Network May Newsletter

Have you ever wondered why some golfers stare at the ball for so long before they actually swing? Or why some basketball players seem to zone out just before shooting a free throw? And some track and field athletes seem to be in a trance right before they line up to race? Chances are, these athletes are tapping into the amazing potential of the human mind.

No, there’s nothing supernatural or weird going on at that free throw line. I’m not suggesting that he’s trying to mentally levitate the ball toward the hoop. (Although that probably couldn’t hurt Shaquille O’Neal’s free-throw percentage!) I’m talking about the use of mental practice….also known as visualization, or imagery.

For many years, great athletes have used mental training as well as physical training to achieve their maximum performance. When performing mental practice, a person visualizes the entire task or skill they are trying to improve, imagining every specific movement of that activity. From start to finish, the athlete will mentally rehearse the movement or skill, and can actually improve his/her physical performance of that movement or skill through mental practice.

In his book “Mental Training for Peak Performance,” Steven Ungerleider, PhD, reports of a study conducted on Olympic track and field athletes regarding mental practice. Out of 633 athletes surveyed, 83 percent reported using mental practice as part of their training. Some mentally practice their performance right before the sport or event, but others set aside time for mental practice as part of their daily training regimen.

Obviously I didn’t write this article to encourage you in your golf game, or prepare you for the next summer Olympics. Mental practice is a not just a widely used training technique for athletes, but also a valuable treatment option in stroke recovery.

Consider the research below on the effectiveness of mental practice in stroke rehab.

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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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Published 10/17/10

WASHINGTON, D. C. When her stroke hit, Edna Wooten somehow stopped her car. Then her grown daughter ignored her slurred protests and raced her to the hospital – in time for a drug to dissolve the blood clot causing her stroke.

Wooten was lucky: Too few stroke sufferers get that clot-busting treatment, especially black and Hispanic patients who are at highest risk of having a stroke and also may be particularly hesitant to seek fast care.
New research is targeting those underserved populations to better spread the word that “time is brain” – the faster you move the more brain you save.

“We basically scare people so much about stroke, it motivates them to denial,” says Dr. Lewis Morganstern of the University of Michigan, an expert on stroke disparities. “What we haven’t done a good job of is telling people there is an effective treatment, that people are in control of their own destiny.”

That was the message stroke educator Shauna St. Clair of Georgetown University took to a senior center in a predominantly black neighborhood in the nation’s capital last week, part of a project funded by the National Institutes of Health.

Most strokes are like a clogged pipe, St. Clair explained: Break up the clog and blood can resume feeding starving brain cells on the other side, which is what happened when Wooten, 61, was treated at a nearby hospital.

“Damaged brain cells we can fix. That’s why we want you to get treatment as soon as possible,” St. Clair told the rapt group. “If they stay damaged, they die.”

About 795,000 Americans have a stroke every year. It is the nation’s leading cause of disability and the No. 3 killer. Symptoms include: sudden numbness or weakness in the face, arm or leg, especially on one side; sudden trouble speaking or understanding speech, seeing or walking; a sudden super-severe headache.
While some strokes are caused by bleeding in the brain, the vast majority are ischemic strokes, the clot kind that the drug TPA can help treat — but only if it’s given within a few hours of the first symptom.
Yet 14 years after TPA hit the market, overall only about 5 percent of U.S. patients get it. That’s partly due to problems within the health care system — but also partly because only about a third of stroke sufferers get to the hospital in time for testing to tell if they’re a good candidate.

Everyone needs to know to act fast if they experience or witness stroke symptoms. The new research comes because African-Americans have strokes at twice the rate of whites and are more likely to die. Hispanics are at increased risk of stroke as well. Worse, both populations tend to have strokes at much younger ages than whites.

Georgetown researchers tracked ischemic strokes for a year in Washington, and found black patients received TPA less often than whites in part because of slower hospital arrival — despite community surveys that found widespread knowledge about stroke symptoms.

“No, you can’t wait to see if your symptoms go away,” says Dr. Chelsea Kidwell, a Georgetown neurologist who heads the project. “No, you should not call your relative or friend. … You’ve got to call 911.”
The findings echo a major study that Morganstern leads in Corpus Christi, Texas, where Mexican-Americans were 40 percent less likely than whites to call 911 for a stroke.

The disconnect isn’t surprising, says Dr. Walter Koroshetz, deputy director of the NIH’s National Institute of Neurological Disorders and Stroke. The most common mistake among all populations when feeling a stroke symptom is to go rest.

Adding to the confusion are so-called ministrokes, a TIA or “transient ischemic attack” where an artery is blocked for a few minutes, leaving no permanent damage. But it’s a warning sign that a major stroke may be imminent, something prompt care to treat risk factors like high blood pressure might avert. Other studies have found half of people who have a TIA never tell a health provider.

It takes community-specific research to learn what act-fast messages work, Morgenstern says. His Corpus Christi project recently taught middle-school students to call 911 if they witness someone having stroke symptoms, with homework assignments to teach their parents, too — thus reaching a hard-to-target population. Next, the project is designing ways that local Catholic churches can help with stroke education.
In Washington, Kidwell is working with ambulances to bypass the closest hospital for one of three certified “stroke centers” — hospitals with 24-hour special capabilities to give TPA. The community education won’t just target seniors but younger people who may witness a stroke, like the woman who told St. Clair she’d noticed her mother leaving church looking drunk — a loss of balance caused by a stroke. And it will stress happy endings like Wooten’s. She slept off a TIA two weeks earlier, and credits her daughter’s love of TV hospital shows for recognizing the major stroke. About an hour after getting the clot-buster, “it was like it never happened,” says Wooten, who says her only lingering problem is a slight shake when her right hand holds something heavy. “I’m driving my car, I’m messing with my grandkids. Thank God I’m doing OK.” ___ EDITOR’S NOTE — Lauran Neergaard covers health and medical issues for The Associated Press in Washington.
For this complete article, Click on www.hometownannapolis.com or
Yahoo NEWS

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

Posted in the January/February, 2011 edition of Stroke Connection Magazine

A poll of stroke patients commissioned by the American Heart Association a year ago that found stroke survivors and their families face significant challenges in the healthcare system. Among the survey’s key findings were that a whopping 69 percent of stroke patients reported difficulty paying for medical care. Of those who said they had difficulty paying for medical expenses, 85 percent reported delaying or putting off needed care or skipping or reducing their medicine. Forty percent of survivors reported difficulties with their insurance plans in the past couple of years and 36 percent had gone without insurance coverage at some point since their stroke.

“Research has found that stroke patients without health insurance have up to a 50 percent higher risk of death who are underinsured also have up to a 50% percent higher risk of death compared to stoke patients with insurance, and patients who are underinsured also have poorer outcomes,” said AHA President, Ralph Sacco, M.D., chairman of neurology at the University of Miami and Jackson Memorial Hospital. “These statistics reinforce why reform or our healthcare system is critical to stroke survivors and those at risk for stroke. We need to make sure all Americans with stroke and cardiovascular disease have accessible, affordable and high quality care.”

Now that healthcare reform legislation — the Patient Protection and Affordable Care Act – is law, many survivors are concerned how it will affect them. While the law is not perfect, the good news is that it contains a number of provisions that should make healthcare coverage more accessible, affordable and adequate for survivors. There are several new protections that stroke patients with private health insurance coverage (or seeking to buy private coverage) should know.

PRE-EXISTING CONDITIONS:
As of Sept. 23, 2010, for children under age 19 (and beginning Jan 1, 2014 for adults), no one can be turned down for insurance coverage because of pre-existing conditions such as stroke or high blood pressure Also as of this past September, insurance plans can no longer cancel coverage when a person becomes sick.

New health plans, called Pre-Existing Condition Insurance plans, were launched last summer. Intended to help bridge the gap leading up to Jan. 1, 2014, these plans are available for people who have a pre-existing conditions and have been without health insurance for at least six months. The details of these plans depend on the state where you live.

COVERAGE REQUIRED:
Beginning Jan 1, 2014, all Americans will be required to have health insurance. In exchange, insurance companies will be prohibited from charging higher premiums because of health status or pre-existing conditions.

Those who don’t receive coverage through an employer will be able to purchase a private plan through state-based health insurance exchanges beginning no later than Jan 1, 2014. Theses exchanges will be one-stop marketplaces where you can compare plans and choose the one that is best for you from a menu of options.

For more information or to read the whole article in Stroke Connection Magazine, January/February 2011 edition, sign up for this free subscription by clicking on Stroke Connection Magazine

For more information on this law click on Healthcare.gov

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Check more websites for brain health by going to Google

Games for Purchase:

Writing classes:
Scrabble: Scrabble

Scrabble Slam (cards): Scrabble Slam

Scattergories: Scattergories

Boggle: Boggle

Speech classes:
Catch Phrase!: Catch Phrase

Guestures: Guestures

Likewise: Likewise

Name 5: Name 5

A stroke, the medical term for when blood and nutrients are cut off from the brain, can have a devastating effect on a person’s ability to communicate. Words that once came naturally for even simple objects before the stroke—such as a chair, a pen, or an apple—are suddenly difficult if not impossible to retrieve. Although some people may recover their language skills in time, for others, the effects can be chronically debilitating.

Such differences in patient outcomes have scientists from the University of South Carolina delving deeper into this language disorder—called aphasia—which results when language centers of the brain are damaged by stroke, head injury, or other causes. In new NIDCD-funded research, they’ve demonstrated not only how important the location of the brain damage is in predicting how well a person will respond to aphasia therapy, they are also investigating a new method for stimulating brain-damaged regions in people with aphasia, in hopes of increasing brain plasticity and perhaps improving word recall.

In research published in the September 15, 2010, issue of the Journal of Neuroscience, Julius Fridriksson, Ph.D., studied 26 patients who experienced chronic aphasia after suffering a stroke that damaged the brain’s left hemisphere, where the language centers are found. He wanted to observe whether treating patients for anomia, an impairment associated with aphasia in which a person has difficulty naming certain objects, can help increase neural activity in key regions of the brain. (Although there are several types of aphasia and each has a variety of symptoms, anomia is a symptom that all people with aphasia have in common.) He also wanted to learn if damage to certain regions of the brain had a particularly negative effect on the successfulness of a patient’s treatment.

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An article posted in Advance for Speech-Language Pathologists & Audiologists, September 20, 2010 in Vol. 20 • Issue 19 • Page 13

Researchers have developed a method to predict post-stroke recovery of language by measuring the initial severity of impairment. Being able to predict recovery has important implications for stroke survivors and their families as they plan for short- and long-term treatment needs.1

“These results indicate that if we know the extent of the initial impairment following stroke, we can predict with remarkable accuracy how patients will function 90 days later,” said Ronald Lazar, PhD, of New York-Presbyterian Hospital and Columbia University Medical Center. “We have established the first reliable metric of the current standard care for post-stroke language treatment and a standard against which future treatments can be compared.”

More than 1 million Americans have aphasia, and stroke is the most common cause, according to the National Institute of Neurological Disorders and Stroke. For many years it was thought that the combination of stroke size, patient age and education, and specific characteristics of language deficit were predictive of recovery, but no reliable metric had been established.

The recent study involved patients in the Performance and Recovery in Stroke (PARIS) database, which is based at the Neurological Institute of Columbia University Medical Center and New York-Presbyterian/Columbia.

Researchers used the Western Aphasia Battery (WAB) to assess language function at 24 to 72 hours after stroke onset and then again at 90 days. Among patients with mild to moderate aphasia after acute stroke, recovery improved to about 70 percent of their maximum potential recovery as long as they received some aphasia therapy. Recovery was defined as the change in WAB score between baseline and 90 days.
This study was funded by the National Institutes of Health.
Reference
1. Lazar, R.M., Minzer, B., Antoniello, D., et al. (2010). Improvement in aphasia scores after stroke is well predicted by initial severity. Stroke, 41: 1485-88.

To read, email, print this article, click on Advance Web .

An invitation from The Academi Of Life to spend a night with Dr. Jill Bolte Taylor, a Harvard-trained Neuroanatomist, Lecturer and Author on:

May 11, 2011 at The New York Society of Ethical Culture in New York City.

“Dr. Jill Bolte Taylor got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions — motion, speech, self-awareness — shut down one by one. An astonishing story.”

Dr. Jill Bolte Taylor is a Harvard-trained and published neuroanatomist. Her brother’s brain disorder and schizophrenia led Dr. Taylor to dedicate her career to studying severe mental illnesses. She is the author of the New York Times bestselling memoir My Stroke of Insight: A Brain Scientist’s Personal Journey. Dr. Taylor gave a presentation at the TED Conference, which has been watched by over ten million and has become the most viewed TED Talk to date. She was chosen as one of TIME Magazine’s 100 Most Influential People in the World.

Dr. Taylor was the premiere guest on Oprah’s Soul Series webcast and was interviewed by Oprah and Dr. Oz on The Oprah Winfrey Show. She’s now an artist as well as a scientist, creating anatomically correct stained-glass replicas of brains that are sold as fine art and also travels the country on behalf of the Harvard Brain Bank as the “Singin’ Scientist.” Dr. Taylor is an adjunct lecturer at the Indiana University School of Medicine.

o Learn how to get your brain to do what you want it to do.
o Learn who is who inside of you.

Join us for a special evening of inspirational storytelling, spiritual conversations, and meaningful music: an evening of “uncommon depth.” Jill will be joined by critically acclaimed singer/songwriter Carrie Newcomer. Presenting on the same stage, author and songwriter weave a seamless story of insight into the wonders of the human brain and the resilience of the human spirit through their own stories of change and transformation.

The evening is designed to be a completely enveloping experience as Jill and Carrie engage the audience in an intellectual discussion, while taking them on a powerful journey into the consciousnesses of their minds, bodies and hearts and at the same time, creating a space of safety, joy and celebration of life.

‘Pay attention to what you are thinking, and then decide if those are thoughts that are creating the kind of life you want created.’ – Jill Bolte Taylor

Register and find out more by clicking on The Academi of Life