“Everyone who cherishes the gift of language will cherish Diane Ackerman’s narrative masterpiece, an exquisitely written love story and medical miracle story, one that combines science, inspiration, wisdom, and heart.

One day Ackerman’s husband, Paul West, an exceptionally gifted wordsmith and intellectual, suffered a terrible stroke. When he regained awareness he was afflicted with aphasia-loss of language-and could utter only a single syllable: “mem.” The standard therapies yielded little result but frustration. Diane soon found, however, that by harnessing their deep knowledge of each other and her scientific understanding of language and the brain she could guide Paul back to the world of words. This triumphant book is both a humane and revealing addition to the medical literature on stroke and aphasia and an exquisitely written love story: a magnificent addition to literature, period.”

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The National Aphasia Association and The Association for Frontotemporal Dementias are proud to be a part of this important conference for both caregivers and persons with Primary Progressive Aphasia that is being hosted by Northwestern University’s Cognitive Neurology and Alzheimer’s Disease Center.

The conference will be held Monday, March 21st, 2011 at The Robert H. Lurie Medical Research Center of Northwestern University in Chicago, IL. The program will include a Keynote Address by Bradley F. Boeve, MD, a professor of Neurology at the Mayo Clinic in Rochester, MN; approaches to assessing and treating mood and behavioral symptoms by Deborah Reed, MD, assistant professor of Psychiatry at Northwestern University; a number of breakout sessions for caregivers, and so much more.

For more information, or to register to attend, please click here .

“This aphasia must be akin to what a foreigner feels knowing very little English. After all, I am learning English as a second language — English the Second Time Around.”

Schultz suffered an aphasic stroke that left her completely without words. She could not speak, read nor write and had difficulty understanding words spoken to her. “Crossing the Void” is the story of her courageous journey back.

With the language part of her brain permanently damaged, in an unorthodox approach to re-learning speech and writing, she taught herself to visualize words to prompt her speech. Her book describes the painstaking process that led her from wordlessness to book author.

In a masterfully crafted narrative, the author brings the reader into her aphasic mind enabling them to better understand what it is like to be aphasic. She provides fascinating insight into the workings of a damaged brain driven to regain normalcy, as well as a frank appraisal of the resources available to help aphasic victims. Hers is the inspiring story of a woman determined to overcome a major disability and, now, to help others do so as well.

“Crossing the Void” is a compelling read for everyone. But especially, it begs to be read by every professional and lay person working with aphasia and language learning disorders.

Order this book through www.crossingthevoid.com or through your local book store.

Below is Aphasia Hope Foundation’s upcoming Professional Forum Series for 2011

January – Maura Silverman, MS, CCC-SLP; Triangle Aphasia Project, North Carolina
February – Kristine Lundgren, PhD., CCC-SLP; Boston University School of Medicine
March – Nan Musson, MA, CCC-SLP; BC-NCD-A, VA Medical Center, Gainesville, FL
April – Mary Beth Clark, MS/CCC
May – Audrey Holland, Ph.D., CCC-SLP, BC-NCD; University of Arizona
June – Anne Ver Hoef, MA, CCC-SLP; Alaska
July – Roberta J. Elman, Ph.D., CCC-SLP, BC-NCD; Aphasia Center of California
August – Carole Pomilio, MA, CCC-SLP; Speech Language Teacher, Kyrene Schools, Arizona
September – Claire Penn, Ph.D., CCC-SLP; ETH University of Witwatersrand, South Africa
October – Leonard LaPointe, Ph.D., CCC-SLP; Florida State University
November – Margaret Forbes, MS, CCC-SLP; University of Pittsburgh Medical Center
December – Anita Halper, MA, CCC-SLP, BC-NCD; Rehabilitation Institute of Chicago

Princeton, New Jersey (January 7, 2011). Lingraphica, maker of the Lingraphica® speech-generating device for aphasia, announces the release of four new SmallTalk apps on the Apple App store.

Designed for people with aphasia, an impairment in the ability to use language, these apps provide a vocabulary of pictures that talk in a natural human voice.

Our New SmallTalk Apps:

SmallTalk Conversational Phrases: words and phrases commonly used in conversations, such as greetings, responses, requests, and statements about well-being.
SmallTalk Daily Activities: words and phrases related to the activities of daily living, such as bathing, dressing, grooming, and leisure.
SmallTalk Pain Scale: pain descriptions and images from the Wong-Baker FACES pain scale.
SmallTalk Intensive Care: words and phrases patients can use to communicate with medical providers in the ICU.
The Rest of the SmallTalk Family:

Other Lingraphica apps available on the Apple App store are SmallTalk Aphasia Female; SmallTalk Aphasia Male; SmallTalk Dysphagia; SmallTalk Oral Motor Exercises; SmallTalk Phonemes; SmallTalk Consonant Blends; SmallTalk Common Phrases; SmallTalk Days, Months, Dates; and SmallTalk Letters, Numbers, Colors.

Lingraphica’s chief executive officer, Andrew Gomory, is delighted to be offering additional SmallTalk apps for use on the iPod touch, iPhone, and iPad. “These SmallTalk apps provide affordable communication solutions,” said Mr. Gomory. “We are pleased to be able to offer our growing family of apps to aid people with their day to day activities.”

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 888-APHASIA (888-274-2742) or visit www.lingraphica.com

Resources and Education for Stroke Caregivers’ Understanding and Empowerment, or RESCUE for short, is a lifeline to help caregivers “keep their head above water.” Stroke onset is very sudden and new caregivers are not always prepared for this new role. The caregiver may be overwhelmed and feel like the person who needs to be rescued. The RESCUE website provides stroke caregivers with information and resources to help them better care for their loved one. The website also gives caregivers information to help them take care of themselves. There are 44 easy-to-read “fact sheets” about stroke and stroke caregiving on this website. They can be downloaded and printed. The 44 fact sheets will be available in Spanish soon. Read More .

NJ Aphasia Study Commission Bill Passed
Dear Friends,

We are pleased to announce on behalf of our friends in New Jersey that the Bill to form an Aphasia Study Commission has been signed by Governor Chris Christie. We hope that this will encourage all of you in other states to push for similar legislation. If you are interested and would like some guidance, please let us know by replying to this email.

Below are comments by Karen Tucker from the Adler Aphasia Center in Maywood, NJ, who was instrumental in the passing of this Bill. Big thanks also goes out to the wonderful people at Kean University’s Institute for Adults Living with Communication Disabilities for partnering with the folks at Adler Aphasia Center to help push along this legislation.

Dear Friends & Supporters,

I am very excited to report that the bill to establish an Aphasia Study Commission in NJ was signed by Governor Christie on Thursday, 1/6/2011.. The bill was sponsored by Senators Weinberg & Allen and Assembly people Huttle, Johnson, Wagner, Voss and Diegnan. It is the first such commission in the nation and is an important first step in helping to improve the quality of life for New Jerseyans living with aphasia.

I want to thank all of you who took the time to write a letter in support of the bill. Your voices were heard and acknowledged by this signing. We know how prevalent and under-recognized aphasia is in our community….in our nation….again- a significant step toward raising awareness about aphasia.

The bill provides for a 12 person commission of professionals and consumers to look at the prevalence of aphasia in NJ, the needs of people with aphasia and is charged with making recommendations to meet those needs. Once the commission is appointed, they have one year to complete their study. I will keep you posted on their progress and share the report with you once it is published.

Thank you again for your continued support as we bring aphasia out of the shadows and into the public forum so that the 1,000,000 Americans and their families that live with condition can live with dignity, understanding and a full and richer life.

With sincere thanks and gratitude,

Karen

Karen Tucker, Executive Director
Adler Aphasia Center

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

An article in Advance Magazine By Jason Mosheim

Widespread for centuries, music therapy took root in the United States in the 1950s. By the early 1970s, most of the work in music therapy on the east coast had been split into two categories: early childhood development-to address pre-educational skills in children with Down syndrome, autism and learning disabilities-and psychotherapy, to help patients deal with mental health issues.

Clinicians also tried to tap into the power of music for a third area: geriatric care. At the time, however, music simply was used to connect with individuals or help them pass the time. “There wasn’t any insight or understanding of how and why music was effective as a therapeutic tool,” said Concetta Tomaino, DA, MT-BC, executive director and co-founder of the Institute for Music and Neurologic Function (IMNF) and senior vice president of Music Therapy at Beth Abraham Family of Health Services in the Bronx, NY.

She realized the power of music when she worked in a nursing home and received positive reactions to it from people with end-stage dementia who were catatonic or agitated. “When I played a specific song, not only did they respond but they recognized the sound as music, which told me that they still had the ability to cognitively process auditory information specifically related to familiar music,” she told ADVANCE.

This discovery led her on a journey parallel to that of other music therapists who were beginning to observe a much stronger connection between music and function that went beyond the psychotherapeutic aspects. “There was something specific about how the brain processed the music or how music gained access to parallel networks,” she said. “This was 30-something years ago, so nothing in the scientific literature even hinted at that.”

Advance Web .

At the age of 21, shortly after moving to Ithaca, New York, to begin a new life with her fiance, the author experienced a stroke that left her aphasic and partially paralyzed. She returned home to Altoona, Pennsylvania, where she underwent months of physical therapy and rehabilitation.
This memoir takes us through the process of self-discovery by which Barbara Newborn learned first to understand and cope with her disabilities and then to overcome them. It recounts her depression and determination, her disappointment and exhilaration. Return to Ithaca ends about nine months after the stroke when the author had indeed returned to Ithaca to begin (once again) a new life.

This is a concise, clearly written story of one young woman’s “triumph over the disabilities of a severe stroke.” The author is currently the Chief of Staff of the National Stroke and Quality of Life Medical Education Institute at Columbia Presbyterian Medical Center in New York.

The book is “user friendly,” including a brief Appendix that gives relevant facts about the occurrence, clinical features, and economic costs of stroke. There is also a reading list and a list of resources available for stroke patients and their families. To order .