Monday, January 20, 2020

Life Must Be Lived in The Present


www.strokecamp.org



http://www.unitedstrokealliance.org/



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Phil Bell is a retired pastor, University Baptist Church, and a stroke survivor. He continues to write his Street & Steeple articles for his local newspaper. I believe this is good therapy for him, and reading his work may be good therapy for you, too.
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Street & Steeple for January 10, 2020 

By Phil Bell, retired pastor, University Baptist Church
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“Life Must Be Lived in The Present”

We are well into the new year. Back in the day when we wrote a lot of checks this would be the time when I’d get frustrated with myself for having too often to having dated the check with the last year, only to scratch out the year and have to replace it with the current one. Maybe you were one of those, also. 

I know people who, the day after a time change, spend the day mentally calculating what the time would have been the previous day. That may explain to themselves why they’re hungry or not, but no matter what time it was yesterday they will be eating by today’s time. 

We do not have the option to live our lives in yesterday or tomorrow, no matter how much we want to. Most or all of you know I suffered a massive stroke just over eight years ago from which I am still paralyzed on my entire left side, unable to walk nor drive a car. Interestingly enough, when I dream it’s usually with my body being whole! In one recurring dream I am driving through a McDonald’s drive thru ordering either a bacon, egg, & cheese biscuit with hash browns, and a small coffee or a breakfast burrito with hot sauce, hash browns, and a small coffee. 

I don’t know if that dream is only of my past or, hopefully, of both my past and my future! What I do know is that my present, in which I live is, regrettably, a whole lot more nutritious. It is either grits, juice, meds, toast, and milk or oatmeal, juice, meds, toast, meds, toast, and milk with me making my own instant grits or oatmeal at home. Actually, that’s not so bad. I can remember, just after my stroke, not being unable to eat at all, with a feeding tube down into my stomach. 

You see, I like my present far better than that past, but not as much as further back when I would drive through McDonalds on my way to my church office! (Please don’t tell my wife, Nancy about that. She doesn’t know that I did it!) Whatever my desire is about the time in which I live, the only option is to live in the present, as is yours. I don’t know what your life is like nor whether you long for the past or for the future or are fearful about it, but I do know that if you’re facing the future without a relationship with Jesus, you have a right to be worried. I don’t just mean whether you’re headed to heaven or hell, but I know He could help you in the present and for the rest of your life. Neither Nancy nor I could get through a day without depending on God to strengthen and provide for us! You can have such a relationship, too. Talk to your pastor or give me a call if you need help. 

Actually the Bible has a good deal to say about living in the present. You may be aware of Ecclesiastes chapter three or remember the sixty’s song by the Byrds, “Turn, Turn, Turn” from which it was taken. Its message is that there is a season and time for every purpose under heaven, meaning to live in the season in which you are. In Matthew 6:34, Jesus says not to be anxious about tomorrow because there is enough evil for today and tomorrow will take care of itself. Way back when God spoke to Abraham, He identified Himself as “Yahweh,” written in Hebrew as “Yhwh, meaning “I am.” I think, not only did He mean I always have been, not a created being, but meant, also, I am the God of the present and at work in the world today! My point is that you and I must embrace the present because that is our only option and where we live. 

I do not mean that you should not try to improve your situation, if possible. For example, I used to love fishing and thought it over after my stroke when I could not hold my rod in my left hand or use that hand to retrieve my lure or fish. However, my son, Andy, found, bought, and gave me a holster which attaches to my power wheelchair beverage holder and fits my rod. Now I can cast, retrieve my lure, get a bite, and reel in my huge catch. Admittedly, my “huge” catch so far has been a size which would not feed a single person without Jesus performing a miracle! 

My point is that you, no matter your situation, can make the most of your present and, with God’s help, thrive. Besides you have no other choice except to be miserable. I know, I’ve been there, but am not miserable now, thanks to God and my wife. In other words, life must be lived in the present, why not make the most of it? 

Phil Bell, retired pastor, University Baptist Church

Saturday, January 11, 2020

Clothing That Works for You


www.strokecamp.org



http://www.unitedstrokealliance.org/



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Clothing That Works for 
You



Getting dressed and undressed — a daily task mostly taken for granted. But after a stroke, the garments we wear can demand effort and attention that forces unwelcome choices: Do I have to give up tailored pants for sweatpants? Will I need someone to help me in the bathroom? I’m invited to a wedding and I can’t put on clothing that is appropriate for the event.
There are four common challenges associated with dressing after a stroke:
  • managing dressing with one hand
  • grasping and manipulating fasteners
  • moving garments over less mobile body parts
  • accommodating orthotics/braces
These challenges may exist alone or in combination. There are two common responses to these challenges: wearing simple clothing and seeking assistance. Simple clothing includes garments that stretch and have few or no fasteners. Assistance may be necessary for clothing that is less forgiving or to manage tricky fasteners. But independence should not require a wardrobe of sweatpants or having to sacrifice personal style.
An alternative approach is to modify the demands of dressing to match one’s abilities while maintaining personal expression and style.

Dressing tools

Long-handled shoehorns, reachers and dressing sticks are often the first dressing tools encountered after a stroke, especially during rehabilitation. These are tools that extend reach to manipulate garments around the body or over limbs. These are also tools to manipulate fasteners. A button hook enables the user to fasten and (with a bit more effort) to unfasten buttons with one hand. Most of these tools are available online. Some are available in medical supply stores or drugstores.
The tools listed above can be used with one hand. Tools designed specifically for one-handed dressing include the Bra Angel™, for donning and fastening a bra and Norco™ Easy-Pull™ Sock Aid, for donning socks.

Adapt Existing Garments and Techniques

You may already use this strategy. For example, if you leave some buttons always buttoned on a skirt or shirt so you can pull it over your head or feet, you’ve adapted the garment and technique to fit you. Some adaptations require basic sewing skills (yours or those of a helper or a tailor). What follows are some simple, low-cost adaptations to garments that make dressing simpler and easier.

ADAPTING FASTENERS

Buttons: Re-attach buttons using elastic thread, so buttons can remain fastened while garment is pulled over the head or over arms (cuff buttons). Another option is to sew buttonholes closed, sew the unused button over the buttonhole and replace with hook and loop or magnetic fasteners (like Velcro®).
Snaps: Replace with magnetic or hook-and-loop fasteners.
Zipper: Attach a small ring through the hole in the zipper pull so zipper can be grasped by hooking a finger into the ring/loop.
Shoelaces: Elastic shoelaces include single straight elastic laces that are tied and curly elastic laces that stay in place without being tied.

ADJUSTING PANTS

A common post-stroke challenge is preventing pants from falling down while tucking in a shirt or manipulating fasteners. This can be especially difficult when adjusting clothing for toileting. This task can be managed with a simple “DIY” tool: two small, spring-loaded clips attached by about 12 inches of cord. Before unfastening the pants, attach one clip to the front hem of the blouse or shirt and the other to the front waistband of the pants. When the pants are unfastened, the front of the pants will not fall to the floor. The length of the cord can be adjusted to the stature of the user.
An alternative to the clips and cord is to sew a loop of cord or ribbon inside the waistband on the affected side. The loop can be hooked over the affected hand or wrist to keep the front of the pants from falling away when the pants are unfastened.

image of long-handled shoehorn
The long-handled shoehorn is among the essentials for dressing after a stroke

Purchasing adaptive clothing

zipper with pull ring
Adding a simple ring to a zipper pull makes it easier to grasp
Adaptive clothing has been available for many years. Early producers focused on clothing for individuals using wheelchairs or prioritized ease for caregivers over style for the wearer. The next evolution of adaptive clothing focused more on function and style. However, stroke survivors have not always been aware of these products or their sources. Producers have depended on catalogs, websites and word-of-mouth to market their products.
Recently, larger clothing manufacturers and retailers have started to recognize both the need for adaptive clothing and the significant market for such clothing. Target, Nike, Tommy Hilfiger, Zappos and others have introduced lines of adaptive clothing or footwear. Simultaneously, some clothing manufacturers have developed products that are more “universally” designed. These items are targeted to the general public but have features that make them a good fit for the needs of stroke survivors.

ADAPTIVE CLOTHING

The large companies that have introduced adaptive clothing are targeting a broad market, including those with sensory sensitivities and wheelchair users. Not every item will meet the needs of stroke survivors. But many of these lines also feature simplified fasteners and ease of access, all with a focus on style. The products are featured on an “adaptive” section of these companies’ websites. Some include filters or menus to tailor the search to specific needs, such as easy closures, ease of movement and seated wear (Tommy Hilfiger) or magnetic closures and “AFO friendly” (Zappos). Adaptive clothing is available for men, women and children. Currently these companies are selling their adaptive lines via websites.
Man modeling a no-tuck shirt
No-tuck shirts are a time-saving option for both men and women.

UNIVERSALLY DESIGNED CLOTHING

Some companies have developed garments and accessories that are not marketed as “adaptive,” but the design reduces some of the demands of dressing. For example, designing men’s shirts to be worn untucked may be a way to blend style and comfort, but it also reduces some of the demands of donning and adjusting shirts with long tails. A footwear manufacturer producing shoes with removable insoles also may produce an AFO-friendly shoe.
The production and marketing of stylish clothing for people with varied abilities is still in its early stages. But it has begun. Visiting the websites where these items are marketed, giving feedback and purchasing the items sends a message to manufacturers and retailers that this is a significant market. The need for adaptive and universally designed clothing, clothing that works, is real.

Sunday, December 29, 2019

Looking to a new year


www.strokecamp.org



http://www.unitedstrokealliance.org/



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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.
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Sunday, December 22, 2019

Stroke Awareness


www.strokecamp.org



http://www.unitedstrokealliance.org/


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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!

Click the link below to see the AHA video.

AHA Youtube Video


Tuesday, December 17, 2019

Selecting a device for AAC


www.strokecamp.org



http://www.unitedstrokealliance.org/


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.  

Show Me The Booster Box
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This is the final part of the Augmentative/Alternative Communication (AAC) for Aphasia three part series.
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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.”




Mobile phone in hand: There are oodles of options for AAC and a dizzying number of features.

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.

Sunday, December 8, 2019

Benefits and Challenges of AAC


www.strokecamp.org



http://www.unitedstrokealliance.org/


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.  

Show Me The Booster Box
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This is part 2 of a three part series. Next week will help you select the proper device for AAC.
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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


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.

A hand holding a message: 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
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.”

Thought bubble with message: Sometimes the choice between low and high tech boils down to simplicity.

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.

Monday, December 2, 2019

Augmentative/Alternative Comm (AAC) for Aphasia


www.strokecamp.org



http://www.unitedstrokealliance.org/


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.  

Show Me The Booster Box
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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.
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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










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.

Notepad stating: Low-tech AAC can be as simple as a notepad.
Low-tech AAC can be as simple as a notepad.
Tablet stating: Hightech AAC encompasses electronic and computerized devices.
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.
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Sunday, November 24, 2019

The Goodness of God Verses the Tragedies of Life”



www.strokecamp.org



http://www.unitedstrokealliance.org/



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This week's blog is submitted by Phil Bell, retired pastor, University Baptist Church. He is a stroke survivor, and occasionally writes an article for the local newspaper. He permits us to post them, also.
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Street & Steeple for September 13, 2019 

“The Goodness of God Verses the Tragedies of Life”
By Phil Bell, retired pastor, University Baptist Church

Between Hurricane Dorian and mass murderers a lot of people are dealing with tragedy in their lives! Most of us probably believe in a God who is good. That may well be the first thing we were ever taught about God. That’s easy to affirm when things are going our way, like when a healthy child is born to us or when we receive a raise at work or win the Lottery! 

What about, however, when a loved one is diagnosed with cancer or we are treated unfairly or a loved one is killed! How easy, then, is it to declare, ‘God is good?!’ He still is, of course, even when our circumstances don’t seem to confirm it.

My wife, Nancy, and I find ourselves among the world of caregivers and stroke survivors. Stroke is never a good thing and has three different causes. God may, for a reason He probably won’t share with us, cause a stroke to happen. If He does, we are told in scripture, it is for our own good, as hard as that is to understand, or Satan may cause it with God’s allowance. More often a stroke is the result of Adam’s original sin and its penalty, which was that our bodies deteriorate!

In our world, God’s goodness is easy to affirm when I make significant progress toward recovery or Nancy gets an unexpected time to enjoy herself, getting a respite from my 24 /7 need for her care. Not so easy to affirm God’s goodness are times I end up on the floor or Nancy’s back hurts from transferring me or when my physical therapist asks me to do something which I simply can’t do! Just because God is good it does not follow that everything that happens is good of course, as I wrote, a stroke is never a good thing to us.

Also true is that God is unchanging, always good, the church word for that attribute being immutable. Some Christians greet one another by saying, “God is good” and receive the reply, “All the time.” God enables his children to get through every tragic period, even, often turning a bad situation to good! The best example of that we find in the life of Joseph in the Old Testament. Sold into slavery by his brothers, Joseph sees them again when they come to him to buy grain due to a world-wide famine. When they recognize him and know he has recognized them, they fear reprisals for what they did to him.

In Genesis 50:20 we find he says, “As for you, you meant evil against me, but God meant it for good in order to bring about this present result, to preserve many people alive.” He does that often, as I relate in the book I’m writing, “Finding Purpose in Pain.” Our world is filled with people suffering their own particular tragedies from Hurricane Dorian and the senseless violence which seems to have overtaken our country!

Should you be suffering your own particular tragedy, I urge you to remember that God is good no matter what your circumstances might tell you! Look for what he may be wanting to teach you by your predicament or what purpose(s) it might be achieving! Those things will help you reconcile the goodness of God with life’s tragedies!

Phil Bell, retired pastor, University Baptist Church

Sunday, November 17, 2019

HELPFUL TIPS


www.strokecamp.org



http://www.unitedstrokealliance.org/



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Stroke Support Group Finder Link
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The following is from the fall Stroke Connection Magazine
http://strokeconnection.strokeassociation.org

HELPFUL TIPS FROM REED AND MARY HARRIS

When Reed Harris had a stroke at the age of 50, it left him almost completely unable to communicate verbally or understand what others were saying. He also had partial paralysis on his right side, profound apraxia, and anomia, the inability to recall or say the correct words. Reed also had some auditory processing issues, causing difficulty with how his brain processed what he heard. Reed and his wife, Mary, worked together on Reed’s stroke recovery and they share some of the most helpful things they’ve learned along the way:

Patience is a virtue 

The Harrises emphasize that it’s important to be PATIENT with all of the ATTEMPTS (successful or not). And remember, lack of speech does not mean there is a lack of hearing. 

Act with patience 

• Demonstrate: Show how to perform the task. 
• Break all actions into smaller steps. 
• Clarify the next step. 
• Repetition - Approach the 20th time as if it were the first. 

Communicate with patience
• SLOW it down. 
• E-NUN-CI-ATE. 
• Come close/make eye contact/touch. 
• Do NOT finish sentences unless asked to. 
• When questioning: MULTIPLE CHOICE is better than YES/ NO.
• BE specific. Allow time to respond.


Long-haul tips 

For couples new to stroke recovery and aphasia, Mary says, “Reed and I resoundingly respond together with the words, ‘Never give up!’” Through their own experience and that of so many people they have come to know, it’s critical to:
• Be creative and customize the plan for recovery. Everyone is
  different. Remember that even a conversation with a pharmacist
  can be a source of motivation and speech therapy!
• Be persistent in the endeavor to recover. 
• Celebrate the tiny steps of progress. 
• Life is the best therapy, so live it!


PATIENT PERSPECTIVE CONTINUED 

“THE EXPERIENCE OF 
STROKE AND RECOVERY 
HAS ENRICHED US AS 
INDIVIDUALS AND AS 
A COUPLE”

Lastly, Mary shares that the day of Reed’s stroke, “…changed the entire course and purpose of our lives. But we go on. We have learned to adapt. While our lives are forever changed, we feel that the experience of stroke and recovery has enriched us as individuals and as a couple. The stroke was our mulligan, our second chance. Our lives are enriched and fulfilled, and we have a greater sense of purpose.”

REED AND MARY HARRIS 
Excerpted and adapted from “Caring for a Survivor with Aphasia,” Stroke Connection® Fall 2016. 
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At United Stroke Alliance we urge you to Be-Faster!
If you have detected the following stroke symptoms, don't wait.  

BE-FASTER!

Don't wait, be Be-Faster to save someone's life. Awareness is critical! What if you could help save your life or someone else’s by knowing the signs of stroke? Once a stroke begins to present itself, BE-FASTER and dial 911 immediately - the more time that is wasted, the more functioning you could lose as a result – up to 1,900,000 brain cells a minute or worse - death. Act FAST when stroke strikes. Be aware of the signs of a stroke and how to act:

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
EMERGENCY
ROOM

Get to the ER by ambulance they know what to do FASTER!