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Tuesday, September 29, 2009

Aphasia robbed Keith Howells of his ability to talk. But he's determined to be heard

'It affects more people than Parkinson's, yet few know what it means'

Rhianon Howells

The Guardian, Tuesday 29 September 2009


'A foreigner in his own life' . . . Keith Howells with his daughter Rhianon. Photograph: Graham Turner

At my wedding earlier this year, my father gave me away. Our progress up the aisle was shaky – he walks with a stick – but we made it. It was an important, but achievable goal; giving a speech was not.

Since his stroke eight years ago aged 55, my father, Keith Howells – ex-policeman, confident public speaker, and last man standing at a party – has suffered from aphasia. A communication disorder, it occurs when the parts of the brain that process language are damaged. It affects 250,000 people a year in the UK and can be caused by head injuries or degenerative illness – but the most common cause is a stroke.

For some people, it's a problem producing language; they know what they want to say but can't find the words, or can't put them together. Some struggle with comprehension. For others, such as my father, with "global aphasia", the damage is so extensive that all aspects of language are affected, but the intellect remains intact.

Before his stroke, my father had a degenerative condition that limited his mobility. But, naturally gregarious, he could still chat, joke and argue, read, and watch films and plays. After he retired he worked in a school for children with behavioural difficulties.

Then, one morning in September 2000, my mother heard a thump from upstairs. She found my father on the bedroom floor, conscious but confused. He'd had a stroke. Thankfully, the physical damage was minimal, but his speech, understanding of speech, reading and writing were all severely impaired.

He seemed bewildered, and although able to say single words, they often didn't make sense. Before I arrived he kept repeating my name, which everyone thought very touching, but it turned out to be a default word used in place of the one he really wanted.

The thought that this social man might never regain his language skills was horrible, but my mother was positive from the start. And we were hopeful – many people recover from aphasia, although doctors warned that significant improvement was unlikely outside the first 12 months.

My father received speech therapy once a week. However my mother's work as an Ofsted inspector took her away from home – and as they didn't qualify for carer's allowance, my father had to go too, so appointments were missed. After several months therapy was discontinued: the magic first year passed and my father was still a foreigner in his own life.

A 2003 study found that more than eight hours of speech therapy a week, for at least 11 weeks, is needed for treatment to be effective, yet the NHS typically provides less than three hours – sometimes just an hour a week for six weeks. There's also evidence that people with aphasia actually can and do make progress after a year – Jenny Dautlich, co-founder of the website Aphasia Now, says it was three years before she began speaking in sentences.

My father has benefited from a supportive family, loyal friends and a stubborn personality. He battles to communicate using gestures, drawings and convoluted verbal guessing-games. He'll often use an associated word to convey an idea; so "America" becomes "where cousin", because we have a cousin who lives in America. If he can't say a word, he might try writing it down. A quirk of aphasia is that the part of the brain that deals with "pre-programmed" language such as swearwords is often unaffected.

One of dad's greatest frustrations is people saying they understand him when they don't, or not taking the time to make themselves understood. It takes patience to communicate with someone who's globally aphasic – you need to talk slowly, repeat yourself, perhaps mime or draw your meaning – but the Eureka moment when you finally make the connection can be great.

Aphasia affects more people than Parkinson's, yet few know what the word means, let alone how the disability presents itself. Shopkeepers, waiters and passersby commonly talk down to my father, shy away or tut in disapproval. For an intelligent man, this is hard to take.

Professor Chris Code, an aphasiologist and neuropsychologist at Exeter University, believes lack of awareness – and media coverage – is partly responsible for the serious shortage of funding available for aphasia services and research. And pharmaceutical companies tend to be more interested in disorders that are amenable to drugs, although this is gradually changing.

Since his stroke, dad's linguistic ability has improved only marginally, but his other communication skills have never been better. And now my mother has signed them both up for a course in Makaton, a communication system based on gesture and graphic symbols. My father is living proof that even if you can't speak, you can still be heard – if only people take the time to listen.

Talking points

• Speak slowly but not as if you're talking to a child. And don't shout.

• Exaggerate stress, intonation, expression and gestures – and pause regularly.

• Use clear, simple words and short, active sentences.

• If you don't understand, say so.

• Ask questions that allow two options only. • Above all, be patient.

Aphasia robbed Keith Howells of his ability to talk. But he's determined to be heardSocialTwist Tell-a-Friend

Saturday, September 26, 2009


Vocabulary - soap, broom, sponge

by Dorothy E Ross PhD CCC-SLP
CleanSocialTwist Tell-a-Friend

Wednesday, September 23, 2009 Text to Speech Software an Attractive Alternative to High-Priced Custom Devices for Voice Communications

I have aphasia and I have a hard time reading. So I decided to search for some software that will read the article, book, email, etc. I did a hard search and finally came up with TextAloud and NextUp Talker. The voice that I have bought is Cepstral Callie 5.1.0 but you can use any voice. as long as TextAloud alouds it. I really like TextAloud I have been using it for two years. What is good about any reader is it voice synthesis. What that means is instead of chops up you will get a man or a woman who talks like we do. I give TextAloud and speech an A.

aphasia and aneurysm survivor
TextAloud and NextUp Talker are modestly priced software titles offering real voice-communication alternatives to high-priced gadgets and devices costing thousands of dollars (and more)
Clemmons, NC (PRWEB) September 23, 2009 -- With health care coverage a hot-button issue in recent weeks, one topic that continues to make headlines is the fact that health insurers are repeatedly willing to cover devices and options that cost patients thousands of dollars, yet those same insurers will not cover the modestly priced, everyday alternative gadgets that are proving far more useful to those battling illnesses or other afflictions day to day. The issue is a familiar one for the software creators at NextUp Technologies (, which specializes in Text to Speech software for PC users everywhere. The company's top two software titles NextUp Talker and TextAloud are bestsellers in part because they have been adopted and championed by those with illnesses or disabilities, and because they are not only affordable solutions (both titles are priced at under $100), they simply work better than machines or devices that often cost hundreds or thousands of dollars.
"Recent media attention has helped to clearly illustrate what we've been working constantly to promote," comments NextUp President Rick Ellis. "The simple truth is that inexpensive software combined with an inexpensive notebook PC can provide a much better solution than dedicated, proprietary devices that cost thousands of dollars yet which can actually do far less. Software solutions like ours are also far more flexible, offer access to dozens of excellent and highly realistic voices, and are inexpensive enough to be a viable option for many people, with or without insurance."
Both NextUp Talker and TextAloud have become welcome solutions for many with disabilities, as user-friendly PC programs that work easily on Windows computers, and which are able to be used in combination with smaller portable devices like iPods, iPhones, and PDAs. Both are budget-friendly, as well, with TextAloud priced from $29.95, and NextUp Talker priced at $99.95. Most importantly, as with the technologies discussed in the media over the past week, both programs have proven to offer useful solutions for everyday people seeking to overcome their disabilities.
NextUp Talker (
NextUp Talker software has become a popular resource for those suffering voice loss, whether from ALS, cancer, stroke, injury, aphasia, or other conditions. With NextUp Talker, users are able to communicate in a clear and human-sounding spoken voice once again, simply by using an ordinary Windows computer, laptop, or Tablet PC. The program installs in minutes, and even offers convenient shortcuts for quickly entering commonly-used sentences and phrases, making quick conversation easy and accessible for anyone.
As discussed in the media over the past week, while there are other custom machines and devices that are 'approved' for this kind of vocal support for patients, they are often prohibitively expensive (with many costing as much as $8,000), restrictive, clunky, and not nearly as mobile or easy for patients to take anywhere. NextUp Talker is meanwhile priced at just $99.95, and includes two Premium AT&T Natural Voices with purchase -- and it works with almost any laptop or PC.
Vocally impaired users of NextUp Talker include:
  • William F., an accident survivor who turned to Talker to be able to communicate more clearly and easily. (August, 2009)
  • Cancer survivor May Rone, who turned to NextUp Talker after researching her best voice communication options along with her husband Chuck, and who used NextUp Talker to maintain a busy and productive life in spite of her voice loss. Chuck and May were even able to record her voice in favorite words and phrases, for use via NextUp Talker even after her surgery. (January, 2008)
  • ALS sufferer and College Professor Stephen Smith, who along with several other ALS sufferers discussed the advantages of NextUp Talker as a resource for those suffering the slurring and voice loss caused by the degenerative process of ALS. (October, 2006)
TextAloud (
TextAloud has similarly become very popular -- in this case, with the visually disabled as a support or even an alternative in some cases (as with NextUp Talker versus comparable yet highly expensive vocal devices) to the traditional 'screen readers' available for the blind. Once again, TextAloud is a budget-friendly alternative because the voices are more naturalistic, and the software is simply more limber and easy to use -- users can listen to e-mails, PDFs, documents, websites, etc., anywhere they go and in more pleasant and realistic voices. The program has also proven to be highly popular with users suffering from dyslexia, ADD/ADHD, or other learning or reading disabilities. TextAloud works with any PC and is priced from just $29.95.
Visually impaired users of NextUp TextAloud include:
  • Welsh Educator Tony Rucinski, a director for learning and information services at a major Welsh University, and who overcomes his legal blindness with TextAloud. (June, 2009)
  • Busy media and theatre student Robert Hansen, who attends a Chicago university, and who turns to TextAloud to help him to maintain a full and demanding academic schedule. (September, 2008)
  • Active retiree Stephen Sprenger, who turned to TextAloud to support his tired eyes and blurred vision. (September, 2008)
About TextAloud:
A highly useful PC program for students, scientists, writers, business people, students and people from all walks of life, TextAloud has been featured in The New York Times, PC Magazine, Writer's Digest, on CNN, and more. Hailed by critics and users alike, TextAloud is priced from $29.95, and is compatible with systems using Windows (R) 98, NT, 2000, XP and Vista. TextAloud can even be listened to on TV, using Tivo's (R) Home Media Option, and also works seamlessly with iTunes, for easy synching with iPod (R), iPhone (TM), or other iTunes-compatible portable audio players. The program is available for fast, safe and secure purchase via
In addition to Nuance (R), also offers TextAloud with optional Premium Voices from AT&T Natural Voices (TM), Acapela (R) and Cepstral (R) for the most natural-sounding computer speech anywhere. Available languages include U.S. English, U.K. English, Indian-Accent English, Scottish-Accent English, Arabic, Basque, Catalan, Cantonese Chinese, Mandarin Chinese, Czech, Danish, Dutch, Belgian Dutch, Faroese, Finnish, French, Canadian French, German, Greek, Hindi, Icelandic, Irish, Italian, Japanese, Korean, Norwegian, Polish, Brazilian Portuguese, European Portuguese, Russian, Castilian (European) Spanish, Latin American Spanish, Mexican Spanish, Swedish, Taiwanese, and Turkish.
About NextUp Talker:
NextUp Talker is priced at just $99.95, and is compatible with Windows (R) Vista, XP, 98, NT, 2000, or Tablet PCs. The program is instantly accessible for download, evaluation and purchase via, and includes a free 30-day trial so that users can truly get familiar with using the software as a new part of everyday life. NextUp Talker comes with "Mike" and "Crystal," an excellent pair of male and female Premium Voices from AT&T Natural Voices (TM), or additional Premium Voices are also optionally available from including Nuance RealSpeak (R) and Acapela (R).
About, a division of NextUp Technologies, LLC, provides award-winning Text to Speech software for consumers, professionals, businesses, educators, and those with visual or vocal impairment, or learning disabilities.
In addition to TextAloud, markets several other innovative Windows software designed to save time and deliver vital information.
Evaluation copies of TextAloud or NextUp Talker are available upon request. For more information on, NextUp Talker or TextAloud, or for a rich assortment of case studies involving users ranging from firefighters and lawyers, to writers, editors, teachers, actors, students, entrepreneurs, doctors, truck drivers, musicians, and more, please contact publicist Angela Mitchell at (904) 982-8043.
All companies and products referenced in this press release are the trademarks of their respective owners.
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See the original story at: Text to Speech Software an Attractive Alternative to High-Priced Custom Devices for Voice CommunicationsSocialTwist Tell-a-Friend

Tuesday, September 22, 2009

Sun comes out for CAS Walkathon

Walkathon participants were seen scattered on the bike trail Saturday afternoon.Walkathon participants were seen scattered on the bike trail Saturday afternoon. WRANGELL, ALASKA (2009-09-21) Despite the rainy weekend, around 25 Wrangellites gathered at the Shoemaker rec site to participate in the first annual Walkathon for Children with Apraxia of Speech. The walk was organized by Holly Hammer and Victoria Martin to raise awareness of Childhood Apraxia of Speech, or CAS, as well as to raise funds. Carter Hammer, a five-year-old Wrangell child, has been diagnosed with CAS, which is a neurological disorder that affects motor speech skills. KSTK's Lisa Phu participated in the walk and files this audio postcard.

Those were the voices of Victoria Martin, Dana Ivy, Noel Rea, Borough Manager Tim Rooney, Mari Selle, and Carter's father Clay Hammer. There were a few of the individuals who participated in the first annual Walkathon for Children with Apraxia of Speech, which took place on Saturday.
Sun comes out for CAS WalkathonSocialTwist Tell-a-Friend

Imaging short- and long-term training success in chronic aphasia

To date, functional imaging studies of treatment-induced recovery from chronic aphasia only assessed short-term treatment effects after intensive language training. In the present study, we show with functional magnetic resonance imaging (fMRI), that different brain regions may be involved in immediate versus long-term success of intensive language training in chronic post-stroke aphasia patients.

Results: Eight patients were trained daily for three hours over a period of two weeks in naming of concrete objects.

Prior to, immediately after, and eight months after training, patients overtly named trained and untrained objects during event-related fMRI. On average the patients improved from zero (at baseline) to 64.4% correct naming responses immediately after training, and treatment success remained highly stable at follow-up.

Regression analyses showed that the degree of short-term treatment success was predicted by increased activity (compared to the pretraining scan) bilaterally in the hippocampal formation, the right precuneus and cingulate gyrus, and bilaterally in the fusiform gyri. A different picture emerged for long-term training success, which was best predicted by activity increases in the right-sided Wernicke's homologue and to a lesser degree in perilesional temporal areas.

Conclusions: The results show for the first time that treatment-induced language recovery in the chronic stage after stroke is a dynamic process.

Initially, brain regions involved in memory encoding, attention, and multimodal integration mediated treatment success. In contrast, long-term treatment success was predicted mainly by activity increases in the so-called 'classical'language regions.

The results suggest that besides perilesional and homologue language-associated regions, functional integrity of domain-unspecific memory structures may be a prerequisite for successful (intensive) language interventions.

Author: Ricarda MenkeMarcus MeinzerHarald KugelMichael DeppeAnnette BaumgartnerHagen SchiffbauerMarion ThomasKira KramerHubertus LohmannAgnes FloelStefan KnechtCaterina Breitenstein
Credits/Source: BMC Neuroscience 2009, 10:118
Imaging short- and long-term training success in chronic aphasiaSocialTwist Tell-a-Friend

Sunday, September 20, 2009

‘He made it happen’

Student-athlete works his way back from brain injury

Hit in the face by a line drive, Matt Cook (shown with father Tom and mother Ann) spent four weeks in the hospital.

Hit in the face by a line drive, Matt Cook (shown with father Tom and mother Ann) spent
four weeks in the hospital. (David Kamerman/Globe Staff/File 2007)
By Jonathan Raymond Globe Correspondent / September 20, 2009

After the injury. After the rehabilitation. After the attention, and recovery, and return to the diamond and court, Matt Cook finally gets to take a breath, and just be a senior in high school.

It was in March 2007 when a stray line drive found its way around a protective screen and struck Cook, who was tossing batting practice, in the face.

Then a freshman, Cook incurred a brain injury called expressive aphasia, leaving him with symptoms similar to a stroke victim. Speech and walking were difficult for a time. But after four weeks of therapy at the Spaulding Rehabilitation Hospital in Boston, he was able to return home to Hamilton.

And 10 months after being hit, he was back on a basketball court, suiting up as a small forward for the Hamilton-Wenham varsity boys’ team.

If you speak to him now, you won’t get even a hint at the traumatic brain injury he suffered. And that’s what Cook prefers.

Instead, he wants to be known as the 6-foot-4 right-hander with an 88 mile- per-hour fastball that projects to top 90 in a few years. The senior who already has a baseball scholarship awaiting him at Northeastern University. The teen with a job at the local YMCA teaching 4- and 5-year-olds the game of soccer. The kid who will go to homecoming, the prom, and then head off to college, just like everyone else.

And not just simply as the kid who got hit by a ball and made an amazing recovery.

“People have said that to me, but for me it’s crazy to be going to college and everything now. I’m fine. Thinking back on it, it is pretty cool that I’ve gone through recoveries, gone through therapy [with success] and everything. But I just don’t really think about it.’’

It’s hard to blame him. He was a bit preoccupied during the summer, playing ball, continuing to regain his skills, performing under the watchful eye of college scouts.

He had interest from close to 30 colleges, including nine Division 1 programs, among them the University of Massachusetts at Amherst, Rhode Island, and St. John’s.

He caught scouts’ eyes at the All-Star Baseball showcase in Milton and the Bay State Games. Northeastern coach Neil McPhee offered Cook a scholarship at the Lynn Invitational.

”During the summer he did well when people were watching, and it worked out very well for him,” said his father, Tom.

His parents still remember, though, when baseball took a back seat.

“The doctors thought he had a chance, but I don’t think anybody saw him coming back as far as he’s come back,” said his father.

His mother, Ann, recounted a recent fund-raiser at Spaulding that put things in perspective.

“Seeing all these patients, one 16-year-old girl who had a head injury seven years ago spoke, and she did a great job, but her speech is still impaired and she still goes through therapy,’’ she said. “So we know it could have been much worse.’’

Normal stuff, like sports and getting ready for college, helped with her son’s recovery.

“That’s the best thing right now. I thought I would be looking at schools and everything and I knew I wanted to go to college for baseball, but I didn’t really know how early I would get into a school,’’ said Cook.

“This process is definitely really cool, but right now it just feels good to be a normal senior.’’

And he has plenty more to look forward to. School started Sept. 2. Basketball practice starts the week after Thanksgiving.

Next month, he and the rest of the Northeastern baseball recruits will spend a night on campus, and go to a hockey game. And there’s that baseball thing.

“I think he can be a dominant player in the [Cape Ann League]. I think he has terrific upside,’’ said his coach at Hamilton-Wenham, Don Hoak. “It’s a credit to him that he had that will to get back. He made it happen.’’

It’s simple, really. Cook is excited to play ball. He’s excited to go to college. He’s excited to be like any other high school senior.

“I’ve just been working hard, getting back into the routine and everything, just trying to get better, and live a normal life, I guess,’’ he said. “Nothing really has changed or anything.’’

‘He made it happen’SocialTwist Tell-a-Friend

Saturday, September 19, 2009

The University of Michigan Aphasia Program (UMAP) VIDEO

The University of Michigan Aphasia Program (UMAP)
The University of Michigan Aphasia Program (UMAP) VIDEOSocialTwist Tell-a-Friend

Local Child Leads by Example Despite Rare Speech Disorder

Image by Tony GormanCarter Hammer during with his swimming lesson with Victoria Martin. Carter was diagnosed with Childhood Apraxia of Speech when he was three years-old.
Tony Gorman

WRANGELL (2009-09-18) This weekend, Wrangellites will be geared up in support of a local child who has a rare disorder. Carter Hammer was diagnosed with Childhood Apraxia of Speech (CAS) when he was three years-old. Since then, his family had to make adjustments and receive outside help in order to accommodate his needs. The 2009 Wrangell Walk for Childhood Apraxia of Speech will take place, Saturday, at Shoemaker Park in an effort to raise awareness about Carter's disorder. KSTK's Tony Gorman was able to spend time with the Hammers to learn more about Carter and CAS and filed this report.
Local Child Leads by Example Despite Rare Speech DisorderSocialTwist Tell-a-Friend

Friday, September 18, 2009

Apraxia Study Unveils Possible Subset of Children with Previously Unrecognized Syndrome (SAAM)

A recently published study identifies a group of children with a syndrome of allergy, apraxia, and malabsorption (SAAM). When given a nutritional intervention containing a combination of omega-3 and vitamin E these children showed dramatic improvements in speech, communication, behavior, and motor skills.

Lake Forest, IL, September 17, 2009 --( According to SpeechNutrients, the results of a recently published research study documents a previously unclassified group of children with a syndrome of allergy, apraxia, and malabsoption (SAAM) who respond to nutritional intervention. The study, published in the July-Aug 2009 edition of the journal of Alternative Therapies in Health and Medicine1, collected data on 187 children with verbal apraxia (VA). After supplementing with an omega-3 and vitamin E combination, 97% of the children showed dramatic improvements in speech, behavior, sensory issues, imitation, coordination, and eye contact.

Apraxia is a neurological disorder characterized by the inability to perform purposeful motor movements, despite having the desire and physical ability to perform the movements. Verbal apraxia affects the ability to produce normal sounds needed for speech while limb (motor) apraxia involves the programming of a hand, leg, or whole body movement. Limb apraxia often occurs with verbal apraxia.

The children in the study shared a commonality of male predominance, autism, sensory issues, low muscle tone, coordination challenges, food allergy, and gut issues. Due to allergies and malabsorption, these children may experience excess inflammation and oxidative stress that may be reduced through supplementation with a combination of omega-3 and vitamin E. Although the exact mechanisms contributing to the benefits remain to be determined, the majority of children experienced a reduction in the symptoms of apraxia. According to the study, “Use of high-dose PUFA and vitamin E in children with a history of VA appeared to lead to rapid clinical improvement of many symptoms of this neurological condition in a large cohort.” (Morris, Agin, p.39)

The SpeechNutrients division of NourishLife has produced an omega-3 and vitamin E nutritional formulation based on the Therapeutic Treatment of Apraxia patent licensed to NourishLife by Children’s Hospital & Research Center Oakland (CHRCO). Thousands of families have tried this formulation currently available as NourishLife speak, and hundreds have reported the same improvements experienced by children in the study.

Mark Nottoli, founder of NourishLife states, “The cases of verbal apraxia and autism are on the rise at an alarming rate. Even though autism is a relatively known condition by the general population, apraxia is not. We now know that over 500,000 children have been diagnosed with autism, and of those, an estimated half may have apraxia. This study is consequential in that not only does it highlight a previously unrecognized combination of apraxia, allergy, and malabsorption, but it suggests help in the form of nutritional intervention.”

Nottoli continues, “Our nutritional supplement NourishLife speak contains the combination of omega-3 and vitamin E nutrients shown to be effective. We are excited that the availability of speak will enable more families to try this nutritional formulation to see if speak is helpful for their child. Already, the results have been stunning. Parents are reporting first words spoken, more complex sentences, easier word recall, and even singing in addition to improved motor planning and movements.”

To learn more about the study and the nutrients used therein, please visit NourishLife speak™ is available at or by calling 800-471-0358.

1Morris, Claudia R, and Agin, Marilyn C. Syndrome of Allergy, Apraxia, and Malabsorption: Characterization of a Neurodevelopmental Phenotype that Responds to Omega 3 and Vitamin E Supplementation. Alternative Therapies in Health and Medicine 2009; Vol. 15, No. 4: 32-41.

About NourishLife:
NourishLife ( intends to contribute to a major improvement in health and wellness by addressing nutritional deficiencies. Founded by nutrition industry veterans, the firm includes expert scientists and nutritionists passionate about health.

The firm was awarded an exclusive license to a patented nutritional formulation designed to support normal speech development. Preliminary evidence shows promise with reports of benefits that include improved speech, imitation, coordination, eye contact, behavior and sensory issues. NourishLife formed a partnership with Croda, the makers of Lorenzo’s Oil, for the pharmaceutical grade omega 3 used in their speak™ product. More information can be found at

NourishLife is a privately held business located outside of Chicago.

Press Contact:
Kara Bolton, NourishLife LLC, 250 E. Deerpath Road, Lake Forest, IL 60045 USA Tel: 847-582-1316

Contact Information
Kara Bolton
Apraxia Study Unveils Possible Subset of Children with Previously Unrecognized Syndrome (SAAM)SocialTwist Tell-a-Friend

Thursday, September 17, 2009

Monday Night Aphasia Support Group 2009-2010 Dates for Groups

Monday 6:30 PM to 8:00 PM 2009 - 2010

Support groups for people with aphasia, and those who care about them on two Monday evenings each month. Each evening that we meet, there are two groups, one for people with aphasia, and the other for co-survivors, significant others, family members, friends, and caregivers.

We can offer this service for
FREE because St. Vincent's Medical Center donates the space, and group facilitators donate their time.

Our Mission
To empower people who are affected by aphasia to access and negotiate the services and opportunities they need for a better life.

Harvey Alter, Stroke Survivor
Monday Night Aphasia Support Group 2009-2010 Dates for GroupsSocialTwist Tell-a-Friend

Wednesday, September 16, 2009

Speaking Out! @ The Midwest Conference Registration Date Change

Speaking Out! @ The Midwest Conference
October 2009

This announcement is to alert you that the Registration Cutoff date for the Speaking Out! @ The Midwest Conference has been pushed up to this Friday, September 18th!

In order to meet this deadline, we are asking that you call us at (800) 922-4622 or fax the completed form to (212) 267-2812 in order to register. You may find more information by visiting

Speaking Out! @ The Midwest Conference will be held October 19th and 20th in Perrysburg, OH. This conference is for Persons with Aphasia, their Caregivers/Co-Survivors and Professionals. This conference has been created especially for you, with an opportunity to participate in a Conversational Cafe that will discuss what's going on in the world of aphasia, as well as a day dedicated primarily to communication devices and other assistive technology. You asked - and we listened!
You won't want to miss this!

We look forward to meeting you in Ohio,
The Speaking Out! @ The Midwest Conference Planning Committee
National Aphasia Association
DaZy Aphasia Centre
The University of Toledo

350 Seventh Avenue
New York, New York 10001
Speaking Out! @ The Midwest Conference Registration Date ChangeSocialTwist Tell-a-Friend

Stroke May Be Striking at a Younger Age


Stroke could be affecting Americans earlier in life than ever before, a new study suggests. “Stroke is no longer an affliction of old age,” says lead researcher Timothy J. Wolf, OTD an instructor of occupational therapy and neurology and investigator for the Cognitive Rehabilitation Research Group at Washington University School of Medicine, in St. Louis. “People in the working ages of life are having strokes with greater regularity than ever before.”

Reporting in the September/October issue of the American Journal of Occupational Therapy, the team also found that while more people under the age of 65 are suffering strokes, rehabilitation is often not offered to younger people with mild stroke.
Wolf and his colleagues gathered data on 7,740 people treated for stroke at a St. Louis hospital between 1999 and 2008. They found that 45 percent were under 65 and 27 percent were under the age of 55. This differs drastically from data from the U.S. National Institutes of Health, which states that 66 percent of all strokes occur in people over 65, the researchers noted.
Most of the strokes among those under 65 were mild. “These individuals typically do not have outward signs of impairment and therefore are discharged with little or no rehabilitation,” Wolf noted. “What we now know though, from following up with this group of people, is that they are having trouble reintegrating back into complex activities of everyday life such as employment,” he says.
About 71 percent of patients who had a mild to moderate stroke were discharged directly home, discharged with home services only, or discharged with outpatient services only, the researchers found.
On follow-up, 46 percent of those with a mild stroke say they were working slower, 42 percent say they were not able to do their job as well, 31 percent say they were not able to stay organized and 52 percent say they had problems concentrating.
“If you are young and have a mild stroke, chances are you will not receive rehabilitation services,” Wolf says. “That does not mean that you do not have any impairments. It means that we as a healthcare community are not doing a good enough job at detecting the more subtle deficits associated with mild stroke.”
The healthcare community needs to pay more attention to this trend in strokes, and begin to modify assessment and intervention strategies to meet the needs of younger, less neurologically impaired stroke patients, Wolf says.
“Right now, our services are heavily weighted toward assessment and intervention for motor impairments and preparing an individual with a stroke to return home,” he says. However, “the younger working age stroke survivor has needs that go way beyond self-care, and he or she needs to be able to return to work and community roles,” Wolf stated.
Richard Isaacson, MD an assistant professor of neurology and medicine at the University of Miami Miller School of Medicine, Florida says that while people may be having strokes younger, it is hard to know from this single study whether this is a trend throughout the United States.
Nevertheless, “this brings attention to the fact that stroke is not just a disease of old people, it’s a disease of people as we age,” Isaacson says.
He speculated that if a trend exists it could be due to risk factors for stroke, including high blood pressure, high cholesterol, diabetes and obesity. “People in their middle-age need to realize they need to control these risk factors,” Isaacson added.
And he agreed that doctors need to do more to help younger people with mild strokes re-enter their lives.
“Neurologists do not obtain enough information to determine whether a patient will have difficulty with returning to work, family and other life events,” Isaacson says. “A lot of times we don’t realize that this person needs occupational therapy to help them focus in getting back to full participation in their previous activities.”
More information
For more information on stroke, visit the U.S National Library of Medicine,
Stroke May Be Striking at a Younger AgeSocialTwist Tell-a-Friend


by Dorothy E Ross PhD CCC-SLP
DeskSocialTwist Tell-a-Friend

Tuesday, September 15, 2009

Emma Allen's stories

Left out of the circle How can a person with aphasia represent their own
interests and participate in making important decisions when they are
not invited to use any of their communication methods?
Emma Allen's storiesSocialTwist Tell-a-Friend

Emma Allen's stories

Introduction Emma works with a stroke survivors' project. She tells the story
of Fred, who dies in hospital, lonely and confused, having suffered from aphasia
since his stroke in 1997.
Emma Allen's storiesSocialTwist Tell-a-Friend

Wednesday Without Words promotes Aphasia awareness

Released 15/09/2009

Despite up to one third of people experiencing aphasia after they have had a stroke, there is very little community awareness of the condition, ACT Minister for Health, Katy Gallagher MLA said today.

The Minister was speaking in support of Wednesday Without Words - a national awareness day being held on the 16th of September during National Stroke Week to try to improve community knowledge of the condition.

"Aphasia is a communication difficulty caused by trauma to the brain, often as a result of stroke," Ms Gallagher said.

"People with the condition can have difficulties speaking, understanding, reading and writing. They may experience significant changes to their quality of life which impacts on their relationships, employment opportunities and ability to engage more broadly in the community. But aphasia is a potentially treatable condition."

Ms Gallagher said ACT Health provided treatment services for patients diagnosed with aphasia in both the acute intervention and rehabilitation phases of care.

"Speech Pathologists within ACT Health Acute Support, and Aged Care and Rehabilitation Services also actively liaise with the Australian Aphasia Association to ensure the provision of evidenced-based speech pathology, and to support patients and families adapting to life with aphasia."

ACT Health speech pathologists are supporting Wednesday Without Words with a foyer display at Canberra Hospital, a whole of government email providing an ‘experience aphasia' activity and a hosted morning tea with clients of Talkback - a supported conversation program to provide social interaction for clients with chronic aphasia.

Wednesday Without Words promotes Aphasia awarenessSocialTwist Tell-a-Friend

Sunday, September 13, 2009

The greening of Gray Gardening has no side effects

Susan Gray harvests a head of lettuce from her garden behind her Terryville home. Whatever Gray doesn't use herself, she puts up for sale at her farm stand in front of her house, called Zelda's Vegetables. Josalee Thrift / Republican-American

For the life of her, she couldn't remember the word "jaw." In 2006, Susan Gray was trying to explain a new pain to her neurologist. But her mind couldn't retrieve the word. Aphasia, the partial or total loss of ability to articulate ideas or understand language, is one of the remaining side effects from a stroke Gray had in 2004 when she was 49.

The other effects — the loss of her job as a chief financial officer, temporary paralysis of her right side — were ultimately less aggravating than the aphasia. Numbers, once her lifeblood, are now gibberish. But what makes sense is her plentiful 2,500-square-foot garden in Terryville. The garden has become her sustenance and her passion.

Most people have up to a year and a half to recover from a stroke, said Dr. Steven Eisen, medical director of the stroke program at Waterbury Hospital. After that window, progress plateaus. To compensate, Gray is finding new ways to communicate. For example, when she couldn't will herself to remember "jaw," she looked up "chin" in the dictionary, then called a friend and described the part of the face.

"Mandible?" her friend asked, before exclaiming, "Jaw!"

After asking how to spell it, Gray wrote down "gar."

"It's kind of comical," said Gray, who is now 54 and has short blond hair and blue eyes. "I can't write an e-mail, and I have to listen to a voice mail five times to get the number down right, but I had been a finance person who drew up complicated insurance contracts."

The greening of Gray Gardening has no side effectsSocialTwist Tell-a-Friend

Saturday, September 12, 2009

Commitment evident at Aphasia Camp


My June 12, 2004, and June 12, 2006, columns were about aphasia, a condition shared by about 40,000 Ontarians.

Aphasia is a language impairment that results from a blockage or bleed in the blood flow on the left side of the brain. More commonly known as a stroke or aneurysm, this damage is a brain attack, in the same way a person can suffer a heart attack. Depending on the location and extent of injury, the loss of language affects each person differently. The ability to talk, read, write and comprehend conversation can be impaired. This doesn't mean that the person's intellect is affected. The person can think and knows what he wants to communicate, but must find an alternate way to express his thoughts.

My husband, Steve Goff, had a stroke 15 years ago in March, at the age of 48. It changed his life immensely. He was unable to read, write, speak, or move his right arm and leg. The physical impairment cleared quickly, but he remained unable to speak many words. He had speech therapy in Kingston, where he was living at the time. Now he speaks a few words, but mainly uses writing and gestures to communicate.

I happen to be able to read in reverse, as a mirror image, so Steve writes words in the air, and I'm usually able to catch his meaning. I'm sure it amuses or captivates people who happen to see us in a discussion in a store or restaurant.

We found that we use whatever works to get a message across. He willingly uses mime, pointing and his sense of humour to convey his thoughts. In fact, I often need to remind myself that Steve is disabled. I prefer to think of him as differently-abled.

Over the years, Steve applied himself to use what worked, to persevere and seek a purpose. He dealt with depression while daily trying to regain reading skills. At a local coffee shop, Steve pored over the newspaper to pick out hockey or baseball scores, and finally accomplished being able to read and retain a sports article. He now reads and writes readily, and can once again do math, which was also lost, since math concepts are language-based.

Early in his years with aphasia he realized that communicating would require more than talking, and he set out to do it. That attitude has carried him far.

His daughter, Teresa Goff, did a piece for CBC radio in 1999, which proved to be a turning point for Steve. In her loss as an adult daughter, whose father has aphasia, she helped him discover his purpose.

With CBC's approval, we had 1,000 tapes of "Talking Through Aphasia" made, and, as I have joked, "Steve was now armed and dangerous!"

With a pen, notepad and paper, he approached various hospitals, Heart and Stroke offices, and anyone who would hear his plea for an aphasia conversation group to be started in Brantford.

Fortunately, he met Jan Roadhouse, a wonderful speech-language pathologist who had a similar desire to have a program for people after they were discharged from speech therapy.

Together, they initiated the aphasia programs that run twice a week at the Adult Recreation Therapy Centre on Henry Street in Brantford.

That was in 2001. When we moved to Waterford, a similar program was started here in 2004. It has expanded to this year include Susan Harper, a speech pathologist, who is centred at ARTC, and provides programs in Brantford, Simcoe, Paris and Caledonia for adults with aphasia.

Since 2002, Steve and I have been invited many places as keynote speakers, where he writes his ideas in words and phrases with a large marker on flipchart paper, while I explain as needed. Ironically, this man who had been a successful businessman and was studying to become a minister when he had his stroke, is now an advocate for aphasia.

After attending a weekend camp near Eau Claire, Wisconsin, in 2006 as keynote speakers, we returned to Canada, so impressed with the experience that we wanted to bring the concept here.

Mary Beth Clark and other speech-language pathologists we met in Wisconsin were very willing to help us plan a similar camp in Ontario.

A remarkable partnering occurred, involving many organizations and individuals, to develop Aphasia Camp 2008. Fundraising and numerous donations helped to defray the cost to campers. Last September the first Canadian aphasia camp took place at Tim Horton Onondaga Farm Camp, near St. George. For two days the people affected by aphasia could forget the condition, and with the help of volunteers and skilled professionals once again enjoy biking, fishing, golfing, crafts, campfires and stargazing. It was such a success that Aphasia Camp 2009 has registered over 100 people who will be in attendance next weekend.

At last year's camp, the energetic and cheerful camp planner, Laura Klaponski, kept things running smoothly as she functioned on very little sleep. In the wee hours of Saturday morning she slipped a schedule under the doors of the sleeping volunteers.

Near the bottom of it was a quote by Margaret Mead, which aptly sums up the work of countless speech-pathologists, volunteers and people involved in this aphasia camp: "Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has."

Our Town is an Expositor feature that presents news and views from communities in our area. Carol Steedman is a freelance writer who lives in Waterford.

Commitment evident at Aphasia CampSocialTwist Tell-a-Friend

Friday, September 11, 2009


A little trip down aphasia lane...

We're going 21st Century:

I'm pulling out all the stops this year. First, it was pipe cleaners; Now, YouTube. Sometimes, my jokes become a reality...

I was assigned to teach my group about the various aphasias a patient might present with following a stroke. Aphasias are disorders related to language. Some aphasias inhibit one's ability to speak, others inhibit one's ability to understand speech, etc... Aphasias come in all flavors and are absolutely fascinating to observe and ponder the electrical processes going awry in the brain to produce the apparent disorder.

APHASIA MADNESS!SocialTwist Tell-a-Friend

Participate in The National Aphasia Association's Survey

NAA Needs Assessment

In order for the NAA to address the many problems facing those who acquire aphasia, the following needs assessment has been geared toward the person with aphasia (PWA) and caregiver(s). If you have received this survey and you do not fit into these categories, we ask that you please click the "forward" button below and send it on to those you know who are PWA and/or caregivers.

The small amount of time that you take to fill out this survey will help the NAA tremendously by allowing us to hear how we can better serve you all. Your participation is confidential and answers are anonymous.
Thank you in advance for participating in this survey. We appreciate your time and effort.

Ellayne Ganzfried, Executive Director
Amy Coble, Info & Admin Coordinator
NAA Executive & Advisory Board Members
The National Aphasia Association
Participate in The National Aphasia Association's SurveySocialTwist Tell-a-Friend