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COMING SOON:

I have written a new book that is going to be released in late May or early June entitled: “The Teaching of Talking; Learn to do Expert Speech Therapy at Home with Children and Adults.”
It is a wonderful contribution to the field, especially since this book is designed for the families and caregivers of those who have stroke and aphasia as well as the speech language pathologists who work with stroke patients. This book was written because for many with moderate to profound aphasia, the insurance will run out way before they are at a level of communicative competence.
The Teaching of Talking teaches the family to do expert speech and language stimulation which corresponds with the way children learn to speak from the start: at home with a loving family member. I hope you will consider educating the public in this revolutionary approach to helping people with stroke and aphasia speak again.Mark A. Ittleman,MS,C
READ an article by the Author by Clicking here . To pre-order the book, click on The Teaching of Talking .

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 .

Here is our first installment from Mary and Darryl Moulder on their experience with 4 weeks of intensive therapy at an Aphasia Center in Florida.

From The National Stroke Association Lenice Hogan, 46, has won the identity crisis facing many stroke survivors who are progressing through recovery. “I spent two years as a victim,” says Hogan, a Faces of Stroke Ambassador, “but have definitely moved to survivor.” Hogan is a survivor of not one stroke, but three, all at young ages. She survived hemorrhagic strokes at the ages of 26, 38 and 39. Only the third was actually recognized as stroke—the first two went undiagnosed or misdiagnosed.
Read more of Lenice’s and other’s stories

Save the Date

National Aphasia Association’s

25th Anniversary Benefit

June 13, 2021
6:00 to 9:00 pm

HONOREES
Barbara Kessler

Aphasia Center of California

The NAA Founders Group
Martha Taylor Sarno, M.A., M.D. (honorary)
Martin L. Albert, M.D.
Thomas Anderson, M.D.
Alan Bandler, Esq.
Antonia Buonaguro, Ed.D.
Don A. Olson, Ph.D.

Helen Mills Event Space and Theater
137-139 West 26th Street
New York City

Details to Follow.

Telling your stroke story helps us save lives.

We call them Faces of Stroke… these stories of real people surviving and thriving and the stories of those who help them through it. Dozens of personal stories were shared last year on our website through our Faces of Stroke campaign, and we’re looking to do even more this year. These stories are enormously powerful tools to educate people about the warning signs and risk factors of stroke. And they’re a great way to prove that no one has to face the aftermath of stroke alone.

With National Stroke Awareness Month fast approaching in May, we want to hear from you! We want to share Faces of Stroke stories far and wide—during May and all year long.

We’re looking to get submissions—text, photos, or videos—in by next Friday, February 24, so please share your story today!

Click here to tell us your Faces of Stroke story. Hearing from survivors, caregivers, family members and healthcare professionals helps us put a human face on stroke to raise awareness and save lives.

We know that for this campaign to be successful we need the courage and inspiration of so many willing to share their stroke story. This is a real opportunity for our community to come together, and we are so grateful for all the stroke champions who make it possible.

With your continued support and participation, we can do more and more every day to prevent stroke. Hope to hear from you soon!

Contact the National Stroke Association to tell your Faces of Stroke story. Hearing from survivors, caregivers, family members and healthcare professionals helps us put a human face on stroke to raise awareness and save lives. Or email: nsa@stroke.org.

Jim Baranski
Chief Executive Officer

National Stroke Association

P.S.: You can already read Faces of Stroke stories from members of the stroke community on the website: Stories

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

An article posted in The New York Times on May 2, 2021
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, 2021
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 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

An article posted in Advance for Speech-Language Pathologists & Audiologists, September 20, 2021 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 .

The NAA would like to share information about this precedent setting case in MA. We are proud to have been involved from the onset and invited to sign on as an “Amicae Curiae” in the amicus brief filed by the National Disability Rights Network (NDRN) in the McDonough appeal.

An “amicus brief” is a document filed in a case by someone who is not a party to the case but is interested in the outcome. National organizations sometimes file an amicus brief in a case that has the potentially of having an impact on other persons who are similarly situated to one of the parties to the case. It is an opportunity to inform the court about broad policy issues that it might consider in deciding the case.

This case involves a crime victim who was denied an opportunity to have the crime prosecuted due to a communication disability that the court failed to accommodate. Other crime victims with communication disabilities in Massachusetts might be affected by the result in this case, and more broadly courts in other states might be influenced by the outcome. Given the potentially broad impact that this case might have on other crime victims with communication issues, an amicus brief is an important vehicle for informing the court about reasonable accommodations that courts can provide which make it possible for individuals to testify despite their disabilities.

Through the unwavering commitment of her attorney, Wendy J. Murphy, and the support of NAA friends including Jerry Kaplan and Paul and Judy Dane, Ms. McDonough has retained her rights. This has ensured that disabled crime victims are entitled to accommodations to ensure their equal access to Justice in criminal cases. In particular, this is a strong, positive step in advocacy for the more than 1 million Americans living with aphasia.

The NAA thanks all those involved especially Ms. Murphy and NAA President Emeritus, Alan Bandler.

Below is Ms. Murphy’s summary of the events of the case for your information:
Earlier this month, Ruby McDonough was in a Massachusetts court fighting for her rights as a crime victim with a disability. Ruby, who has aphasia, was sexually assaulted in 2009 by a male nurse’s aide at the nursing home where she has lived since suffering a stroke more than ten years ago.

As with many aphasic persons, Ruby has trouble communicating in narrative style. But she had no trouble telling her family, the staff and the police exactly what happened.

The man accused of violating Ruby was charged with sexually assaulting Ruby in early 2009. During pretrial proceedings his attorney asked that Ruby be subjected to a competency hearing. A court-appointed expert evaluated Ruby and found her to be mentally competent, though noted that she would need accommodations to help her communicate at trial, such as being allowed to answer in yes and no fashion, use gestures and images, and being allowed sufficient time to reply when more of a narrative was necessary.

The court did not allow ANY accommodations, and Ruby was made to testify at her own competency hearing without any help. Thus, when defense counsel asked things like “tell us what happened”, Ruby struggled. At one point, defense counsel stood between Ruby and the perpetrator and asked whether Ruby could “see” the man who abused her. Clearly use of the word “see” in such circumstances is unfair, and a fully abled person could simply have responded, “no, I can’t SEE him because you’re blocking my view” - but he is right there behind you”. Ruby knew the attorney was trying to trick her, so she became frustrated and emotional. The court ultimately found her not competent to testify.

This is when I became involved as Ruby’s private attorney. A lawyer from the Victims’ Rights Law Center had been assigned to represent Ruby at the competency hearing, but that attorney filed no pleadings, objected to nothing that occurred during the hearing and never once argued that Ruby’s rights under the Americans With Disabilities Act were being violated by the court’s refusal to afford Ruby any accommodations. Some advocacy groups as a matter of policy refuse to aggressively represent the interests of crime victims, which is why it is critically important for a victim to ask around and to get feedback before agreeing to utilize the legal services of certain “victims’ rights” groups.

I filed a special appeal for Ruby to the Massachusetts Supreme Judicial Court, arguing that Ruby’s rights under the ADA had been violated, and that the violation caused her to be illegally adjudicated incompetent. After a hard fought battle during which the prosecutor and defense both opposed our effort, we finally prevailed in August, 2010. The court not only ruled that Ruby’s rights had been violated, it established brand new rules to ensure that the rights of all disabled crime victims will be better protected. The landmark decision was a first of its kind court ruling and makes clear that persons with disabilities not only have a right to things like wheelchair ramps to ensure they get IN to the courthouse, they have a right to accommodations that will enable their “full and equal” testimonial and participatory rights as WITNESSES in criminal cases. Given that persons with disabilities are disproportionately victimized by criminal violence, in part because perpetrators anticipate they will not be held accountable - especially if the victim has a communication disability - this new court ruling means that many more victims will be allowed to testify and criminals will be better deterred from selecting vulnerable individuals to be their victims.

After announcing its new decision, the Supreme Judicial Court sent the case back to the trial court where Ruby’s rights had been violated. When we went back to the trial court in October, we expected the judge to rule that Ruby would now be allowed to testify, but instead the judge announced that Ruby would have no such opportunity because the perpetrator, an illegal immigrant, had been sent to Miami for immediate deportation. The judge also refused to simply reverse the illegal ruling that had labeled Ruby “incompetent”.

I decided to file another appeal to the state supreme court, after which we went back again to the trial judge in November, hoping that this time the perpetrator would be present so that Ruby could have her day in court.

To our delight, the perpetrator showed up, and the judge completely changed his attitude, finally acknowledging not only that Ruby was entitled to all sorts of accommodations, but also that she would indeed be allowed to testify at trial. The judge essentially ruled that because the basis for the earlier decision on competency had failed to recognize Ruby’s capacity to testify with accommodations, she had a right to take the stand at trial and utilize all reasonable accommodations to facilitate her communications as a witness against her assailant.

The trial date is now set for January 12, 2011.

Needless to say, Ruby is very excited that her dignity has been restored and her voice will be heard. Win or lose, Ruby’s strength and perseverance in this case have helped ensure equal justice for all persons with disabilities.

We are grateful that members of the aphasia community were in court with Ruby during the last two court hearings. We hope to see support for Ruby again on January 12.

The aphasia community has been extremely helpful in more ways than I can say in this brief summary.

Thank you - and Happy Holidays.

Wendy Murphy

The National Aphasia Association
Ellayne Ganzfried, Executive Director
Amy Coble, Info/Admin Coordinator