***************************************************************** We have a lot of good, fun things happening in 2020. In addition to our Strike Out Stroke, Youth Education, Retreat & refresh Stroke Camp and BEFASTER programs we have a couple more.
For instance:
Great Egg Scramble
CLICK HERE --> 2020-great-egg-scramble <-- b="" nbsp="">VIEW OUR OFFICIAL WEBSITE FOR DETAILS AND TO REGISTER
Around Easter time, Saturday, April 4 from 6:00-10:00 pm at the Peoria Riverfront Museum in Peoria, Illinois we are having a Great Egg Scramble.
Why should kids get all the fun this time of year? Join the United Stroke Alliance for your opportunity to act like a kid again! Register your team of 4 below to hunt for prize-filled eggs throughout the Peoria Riverfront Museum! After the egg hunt entertainment is provided by the band, Three and a Half Men. Raffle basket winners will be drawn, and you can check out the museum exhibits. Appetizers and a cash bar from Barrack's Cater Inn will be available throughout the night!
***Must be 21+ to Attend***
All proceeds will support the United Stroke Alliance's programs on the Prevention, Awareness, and Recovery of Stroke.
Trivia Night This is a fun night of brain teasers, good food, raffle baskets, raffle tickets, blind auctions and more. Our raffle baskets are generally worth around $100+ each. We have organized these for several years, and in 2020 we are planning another sometime in the first quarter of the year. All proceeds will support the United Stroke Alliance's programs on the Prevention, Awareness and Recovery of Stroke. Visit our United Stroke Alliance Web Site to watch for locations and dates. *****************************************************************
***************************************************************** At the bottom of this article you will find a link to a series of videos about stroke and stroke recovery. They are available on the American Heart Association(AHA) web site. AHA has a wealth of information about stroke. We are not affiliated with AHA but, with their permission, I offer them to you on our United Stroke Alliance blog.
Our goal at United Stroke Alliance is to promote stroke awareness, how to recognize a stroke and what to do. We provide three programs to achieve this goal: Strike-Out-Stroke (SOS), Youth Education on Stroke and Retreat & Refresh Stroke Camp.
Strike-Out-Stroke (SOS)
Our SOS program is the nation’s largest awareness campaign – reaching MILLIONS of people with the lifesaving BEFASTER message! We take this message to thousands of people attending major and minor league baseball games – a captive and passionate audience. Our goal is to teach the signs of stroke and how they could strike, so BEFASTER and call 911. We deliver our messages on the field, on signage at ball fields, handing out flyers and info, news interviews and radio spots!
Since 2014, we have reached live – over 3.2 million game attendees, and over nearly 40 million impressions from radio, web and other news media. We are striving to double those numbers in the next 2 years, but we need your help to spread the word – and generate more funds to keep striking out stroke. We also plan to grow the programs into the National Basketball Association, National Football League, World Racquetball Tour and Major League Soccer and much more. Stay tuned for more exciting sponsors and sports heroes and more!
B.E.F.A.S.T.ER
BALANCE
Sudden loss of balance
EYES Sudden blurry or loss of vision
FACE Sudden numbness, one side drooping - can you smile?
ARMS Sudden weakness in arms - can you raise both?
SPEECH Slurred or mumbling speech
TIME Call 911 NOW!
ER EMERGENCY RESPONSE
Get to the ER by ambulance they know what to do FASTER!
Youth Education on Stroke
Our Youth Education on Stroke Awareness program has proven to be extremely effective in classrooms and helped save lives in families! We teach a curriculum around prevention and awareness in 5th grade classrooms as part of the health & wellness program and now hope to share this program worldwide. Our youth has the ability to learn very easily! Our new site has referral programs and forums to teach learn and share stories of success, along with hero of the month nominations for those great people, students and teachers that help spread the word and save lives.
Retreat & Refresh Stroke Camp
The Retreat & Refresh Stroke Camp program was first developed in 2004 by Marylee & John Nunley (Executive Directors) following John’s stroke in 2001. They realized a dire need for a program that could help stroke survivors and their care providers in many ways cope with the many challenges of stroke. The mission of this program – is to improve the quality of life for stroke survivors, caregivers, and families through relaxing weekend retreats. Such activities include, group discussion, speakers, music, games and massage, dance, swimming, fishing and craft activities to stimulate the body, mind and spirit!
United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees. To receive your free Booster Box please call our office at 309-688-5450 or email info@strokecamp.org to request yours. Subscriptions will be available for purchase and information will be inside your free box.
***************************************************************** This is the final part of the Augmentative/Alternative Communication (AAC) for Aphasia three part series. *****************************************************************
Selecting a device
There are oodles of options for AAC and a dizzying number of features. People with aphasia should work with their SLP to identify the processes and devices that will best support them.
SLPs understand what is available and will be able to match the person’s needs with device or system features. “In general, a speech pathologist should be involved in all aspects of assessment,” Gutmann said. “Whether you’re thinking high-tech, low-tech, it doesn’t matter. In aphasia, you can have various profiles of impairment. In general, there are four major language domains that can be affected by aphasia — speaking, understanding, reading and writing. Spoken language subsumes speaking and understanding, and written language subsumes reading and writing.”
To start the process of identifying appropriate AAC, an SLP evaluates the survivor’s communication needs. They identify what the survivor wants to be able to do. They consider information from the survivor’s comprehensive language assessment. The survivor’s other deficits also must be considered:
Are they in a wheelchair? Do they use a cane?
What can they carry?
Are there vision problems?
Can they swipe a page? Press a home button? Tap an icon?
If they can’t use their hands, are they willing to use alternate access, like auditory cues?
Do they need symbols, text or pictures? A combination of those?
Can they identify communication environments, topics, partners and current modes of communication?
“Once a thorough evaluation is complete, we would consider the various technological options and conduct a process called feature matching, where you match the person and their needs to what each technological option offers,” Gutmann said.
“The research is very clear now that people with aphasia can work with and relate to personally meaningful, highly contextualized photographs much more readily than a grid of symbols arranged according to parts of a sentence — noun, verb, object, adjective,” Gutmann said. “So we would look at the various apps and devices that are available, thinking about what this person wants to be able to accomplish in their everyday communication, and then narrow down the field from all the available AAC apps to things that are more specific, tailored to adults, and that support text, pictures and VSDs, and can be customized.”
Speech generating devices use a variety of components — text, icons, photographs. “That’s part of the assessment process to see how the person relates to and understands those different forms of representation and also how they can use them,” Gutmann said. “Can they put together icons to make a sentence, or can they spell well enough that they’d rather type something, or are they better looking at a picture?
“In the best-case scenario, you might have a system that supports all of those different aspects,” Gutmann continued. “So, if you want to talk about a fishing trip, it’d be great to have a picture of the humongous fish that you caught and whoever was on the trip smiling in the background. They could work together with the speech pathologist to have messages related to that picture programmed and saved so that they can be readily accessed, or a message for a doctor connected to a pain scale or a specific question about a medication or upcoming surgery.”
Learning the system
McKelvey emphasized that any form of AAC is useless without training. “You can’t hand a survivor a speech-generating device or phone app and say, ‘Here, now use this to communicate,’” she said. “That is no more effective than sitting someone in front of a grand piano and saying, ‘Now, play Mozart.’ There has to be training and support involved, and that means the family and caregivers, too. My task is to bring them into this treatment process and show them ways to support their loved one’s comprehension and communication. When I do that, they are a part of the process. It’s when everybody understands the supportive techniques, strategies and systems, it’s much more effective.”
So, go low or go high?
Bottom line, low-tech is usually less expensive and is user friendly for those unaccustomed to tech devices. High-tech is versatile with almost endless capacity to meet diverse needs and can be the preference of those already familiar with devices.
But ultimately, it’s about what is appropriate for the individual. “I have a gentleman who has a little 97-cent flip book that he writes things on to help clarify his message,” McKelvey said. “He’s always flipping through his book to use a word or find something that he discussed earlier in the day. We enhanced it with peel-off tabs, so he could mark conversations with different colors, which made it easier to locate information. Now, that may not work for somebody else, but it definitely worked for him.”
McKelvey added this final thought: “There is no research evidence that says that an individual who uses AAC will never speak or that it will prohibit them in some way from speaking. When we talk about people with aphasia, I talk about it in terms of communication. Depending on when their stroke happened, they may get more actual speech back, but I’m not going to wait for that speech to emerge. Individuals with aphasia need to be able to communicate right now with the abilities that they have. They need to be able to participate in making decisions about their medical care as well as communicate with their family, friends and community members. Communication can’t wait. It’s critical for individuals with aphasia to have a successful way to communicate right now. As they become more adept at using strategies, their communication needs may change and therefore the strategies and systems they use should be modified to meet their current communication needs. Most people with aphasia will use more than one modality to communicate be it gestures, drawing, photographs, speech, communication board or a high-tech device. The most important thing is that the individual communicates wherever they want, with whomever they want, about any topic they choose using the most effective mode of communication they can.”
This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.
United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees. To receive your free Booster Box please call our office at 309-688-5450 or email info@strokecamp.org to request yours. Subscriptions will be available for purchase and information will be inside your free box.
***************************************************************** This is part 2 of a three part series. Next week will help you select the proper device for AAC. ***************************************************************** Augmentative/Alternative Communication (AAC) for Aphasia
Communicating When, Where and What You Want
The high and low tech of augmentative and alternative communication for aphasia
BY JON CASWELL
Benefits and Challenges
A benefit of high-tech AAC is capacity. A physical notebook can only hold so many pictures, but a smartphone or tablet can hold thousands.
“There are several mobile applications that combine the use of photographs, writing, drawing and text to allow the individual with aphasia to use those to support their communication,” McKelvey said. “It can be programmed with a greeting for your daily coffee order. Sometimes, we use what we call a floor holder that introduces the individual using AAC and says, ‘I’m using this communication device to help because it’s difficult for me to get my words out, but I can understand what you’re saying.’ It really depends on the individual needs of the person.”
Some patients prefer the high-tech, and both experts surmised that this reflects the person’s comfort with technology before the stroke. “Our folks who are in their 80s, 90s and sometimes 70s just prefer to use low-tech strategies,” McKelvey said. “But this next generation may be different. They are used to using technology all the time and may want to use … this type of technology for communication as they’re so familiar with it.”
Dr. Miechelle McKelvey
A little over a decade ago, someone carrying around a device all the time might have seemed odd. “With the proliferation of tablets, there is less stigma involved in somebody using or carrying around a tablet that they use for various purposes because lots of people do it,” Gutmann said. “Even dedicated devices these days maybe have sort of a tablet-looking- type device or a laptop type of device, so they may not be as different looking as they may have been in the past.”
High-tech allows for more complexity in communication. “In most high-tech systems, you can prepare and save messages and have them ready to go,” Gutmann said. “You could also communicate across space with something that has a voice output, so you could talk on the phone, whereas for the most part, low-tech options are very limited in that respect.”
Complexity can be a challenge with high-tech AAC — ease of navigation, ease of organization and customization are important. If survivors can’t make it their own, it will never be part of them. “It has to be organized and personalized for the individual who has aphasia. It really has to make sense for the user,” McKelvey said. “It can be a challenge to figure out how it is going to be most facilitative. A lot of trials and feedback about ease of use are necessary. When we design something for a patient, they have to take it out and use it. Then we come back together and talk about what worked and what didn’t. How can we make this better?”
Gutmann emphasized that programming is time intensive. “It can be fabulously successful, but it can also fall flat on its face if you don’t have buy-in from the person with aphasia and their most important conversation partners,” she said. “Also, there are so many considerations for systems. You have to consider if the person can navigate it. Can they use a smartphone? People who were tech users before they had aphasia may be more inclined to embrace this as part of their AAC. People who weren’t users of tech before they had aphasia may find themselves less inclined to embrace this as part of their intervention.”
High-tech AAC requires a battery or an electrical outlet. And, as amazing as it is, technology always has the potential not to work. “I never have an individual communicate using just one method because I don’t communicate using just one method, so I don’t expect my patients to,” McKelvey said. “There has to be a low-tech way for them to communicate when their high technology isn’t available to them for whatever reason — it doesn’t get plugged in, it doesn’t work that day, they left it in the car, whatever.”
If something does go wrong with a mobile tablet, what then? “Who’s going to be this person’s tech support?” Gutmann asked. “Is it going to be their spouse, their child, their best friend, their grandchild? A dedicated speech-generating device is going to come with tech support from the manufacturer. But when you buy a commercially available tablet and an app, who’s responsible for that? If something goes wrong, do you take it back to the place where you got the tablet? Maybe it’s not a tablet issue; maybe it’s a problem in the app. Maybe it needs updating. Maybe there’s a problem with the device. It’s harder to disentangle those things.”
Neither low-tech nor high-tech AAC is better than the other. But it’s not hard to imagine that using tech that actually speaks for you can make a different impression. “You might be perceived as smarter, more able, more capable,” Gutmann said. But not all people will relate to an artificial voice coming from a device. And there are situations that may require low-tech AAC. “What happens when the power goes out, or you need to communicate in the shower or bath? If you need help with those type of tasks, you can’t be taking a tablet or a dedicated device into the bath or the shower.”
Sometimes it boils down to simplicity. “Honestly, a lot of my patients just prefer the low-tech because they can write or draw or use the word list, and it’s just easier for them to communicate using those methods,” McKelvey said. “It really depends on how efficiently they can locate what they want to say when they need to say it. Personalizing the organization and vocabulary within the AAC system can lead to successful communication.”
Costs
“Cost can be a barrier for some individuals — if you’re looking at a particularly sophisticated speech-generating device, up to $7,000,” said McKelvey. “Speech-generating devices are considered essential durable medical equipment by Medicare and Medicaid, but there has to be an evaluation from a speech therapist.” Getting Medicare or Medicaid to cover the cost requires paperwork and the process for approval can take some time. McKelvey tells us that there are programs and organizations that may offer equipment on loan. This gives individuals with aphasia a chance to try out the technology first. “If we’re talking about an app on a phone, those can be anywhere from $5 to $250 plus the cost of the device,” she said.
United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees. To receive your free Booster Box please call our office at 309-688-5450 or email info@strokecamp.org to request yours. Subscriptions will be available for purchase and information will be inside your free box.
***************************************************************** This week starts a series of a article I found at strokeconnection.org. I have broken down the article into three sections because it is lenghty. This week it will describe what AAC is. Next week will cover the Benefits and Challenges of AAC, followed by Selecting a Device the third week. ***************************************************************** Augmentative/Alternative Communication (AAC) for Aphasia
Communicating When, Where and What You Want
The high and low tech of augmentative and alternative communication for aphasia
BY JON CASWELL
After stroke, community is important for recovery, and communication is key. “I have learned from my patients that the most important thing for them is communication,” said Miechelle McKelvey, Ph.D., CCC/SLP and professor and department chair in the communication disorders department at the University of Nebraska-Kearney. “I’ve had so many spouses of stroke survivors tell me: ‘I used to think the worst thing would be if he or she couldn’t walk. But I never really thought about them not being able to communicate.’ It’s how we connect with our loved ones and our community, even our pets. It’s how we connect with the world.”
Speech language pathologists (SLPs) are all for anything that supports survivors’ ability to connect with their world and those in it. “My goal is that a person should be able to communicate in any environment they step into, about any topic they choose, and with any communication partner,” McKelvey said.
Augmentative and alternative communication (AAC) methods help make that happen. According to the American Speech Language and Hearing Association:
AAC includes all of the ways we share our ideas and feelings without talking. We all use forms of AAC every day. You use AAC when you use facial expressions or gestures instead of talking. You use AAC when you write a note and pass it to a friend or co-worker. We may not realize how often we communicate without talking.
People with severe speech or language problems may need AAC to help them communicate. Some may use it all of the time. Others may say some words but use AAC for longer sentences or with people they don’t know well. AAC can help in school, at work and when talking with friends and family.
Types of AAC
AAC methods generally fall into two categories — high tech and low tech.
Low-tech AAC can be as simple as a notepad.Hightech AAC encompasses electronic and computerized devices.
Low-tech AAC can be as simple as a notepad. One of McKelvey’s colleagues developed a small pocket calendar that, instead of dates, has word lists, sentences, phrases, topics or even pictures that a person could need to communicate. “Other types of low-tech or no-tech communication would be as simple as gestures or facial expressions,” McKelvey said. “Anything that a person would use to either support what they are communicating or that a communication partner would use to support someone with aphasia’s ability to understand what’s being communicated to them.”
“Low-tech AAC can include anything from actual pictures or photographs to a communication board,” said Michelle Gutmann, Ph.D., CCC-SLP and clinical professor in Speech, Language, & Hearing Sciences at Purdue University. “You can either develop them and customize them, or there are some prefabricated ones on the market, from an emoticon [images that indicate emotions] rating scale, to something called a boogie board that is like a magic slate that can be written on but easily erased. Low-tech pretty much encompasses anything that is non-electronic.”
High-tech AAC encompasses electronic and computerized devices. “I think we have more options now because of two things that happened in terms of the research and the technology,” Gutmann said. “Starting in 2006, researchers started talking about ‘Visual Scene Displays.’ Visual Scene Displays are highly contextualized, personally meaningful and relevant pictures on a communication device that are used to help people with aphasia communicate. Then, there was the proliferation of mobile tablets that readily support the use of pictures and the many apps that support communication.”
Different mobile apps support communication in different ways. “Some applications have sentences and phrases that speak when the person presses a button,” McKelvey said. Some apps are as simple as a whiteboard surface that can be drawn or written on with a finger or stylus or an onscreen or peripheral keyboard can be helpful.
In addition to mobile apps, high-tech AAC also includes dedicated speech-generating devices. The sole purpose of these devices is to support communication, whereas a tablet supporting AAC apps also runs apps for other purposes.
Tobii Dynavox is an example of such a device. “A dedicated speech device would have presets and access to vocabulary,” McKelvey said. “Then it has to be personalized for the individual’s needs. Some apps can be customized but the features of the apps need to meet the needs of the user. The individuals with aphasia must be able to navigate through the app and locate what they want to say efficiently during the conversation. This can be a challenge for individuals with aphasia. It is important to have an AAC evaluation with an SLP to ensure this match between the needs and abilities of the person with aphasia and the features of the AAC system be it low-tech or high-tech.”
Both experts were clear that dedicated speech-generating devices are not necessarily better or worse than low-tech communication displays, notebooks and photographs. All can be useful for people with aphasia. “And every high-tech device needs a low-tech backup, something to use when the high-tech can’t be used,” Gutmann said. “Some people prefer low-tech because it requires whomever they’re talking with to be face-to-face with them, engaged with them right there and really involved in the communication. On the other hand, a high-tech system could allow somebody to prepare a message in advance. For example, going to a family reunion prepared to ask people how they’re doing and updating them about themselves.”
Next week will cover the Benefits and Challenges of AAC. ------------------------------------------------------------------------
