Sunday, March 31, 2013

Charlotte, North Carolina, AANN Conference

by Lauren Kramer
Retreat & Refresh Stroke Camp Coordinator  

Larry Schaer, Retreat & Refresh Stroke Camp's Associate Director, and I got the privilege of going to beautiful Charlotte, North Carolina for the AANN conference.  AANN stands for the American Association of Neuroscience Nurses.  Lucky Larry drove the entire way there, but I flew down because I had to conduct a Chime Strokers concert the day that he needed to leave with our supplies.  

If you haven't heard of the Chime Strokers before, be sure to check out our website -

You can also listen to some of our songs on  

Anyway, so Larry drove and I flew.  He timed picking me up from the airport on Saturday perfectly, and we headed off for downtown to the Charlotte Convention Center.

You might ask why we went to the conference - well, we wanted to talk with the conference attendees about our DVD and our camps. The DVD is called "You've Had a Stroke, Now What? Insights from Survivors and Caregivers."  It is designed for hospitals, stroke centers, rehab facilities, etc... to distribute to their patients at discharge.  The DVD is over three hours long, but is broken up into 15 different topics that you can select and watch at your leisure. Of course, if you want to have a movie marathon and watch the whole thing you can do that, too - just be sure to have lots of popcorn on hand!  The categories on the DVD are:

1.) The New Normal: Life After a Stroke
2.) Family & Friends: Changing Roles & Relationships
3.) I Need a Nap!: Fatigue & Stroke
4.) Darnit! I Know That Word: Dealing with Aphasia
5.) Walking in Your Shoes: Advice FOR Caregivers FROM Caregivers
6.) Facing the Public: Going Out in the World Again After a Stroke
7.) Lean on Me: Stroke Support Groups/Stroke Camp
8.) Five Dark Clouds: Depression, Anger, Frustration, Sadness, Anxiety
9.) True Grit: Perseverance in Recovery
10.) Just One More Time: The Role of Exercise & Repetition in Recovery
11.) Creativity: Music & the Arts After a Stroke
12.) Faith & Inspiration: The Role of a Higher Power
13.) Don't Forget to Laugh: The Power of Humor in Recovery
14.) Attitude & Motivation: Finding Joy Again
15.) Out Takes & Credits

Here are a couple of photos of our booth that we set up at the conference.

In addition to our DVD's, we also had our other merchandise for sale-t-shirts, long sleeve shirts, hoodies, hats, and Monica Vest Wheeler's book for caregivers Coping With Stroke.

 Now through May 15, you can save $5 off a hoodie!  Go to to place your order.  On the screen, after you enter your credit card information, there is a discount code box.  Simply enter the code "Hoodie", without the quotation marks, to get the $5 savings.

The conference was great!  We met so many wonderful people from all over the country, even as far away as Alaska!!

The weather was absolutely gorgeous with temperatures in the 70's each day we were there.  It was hard to force ourselves to go inside and not enjoy the warm temperatures.  As we drove home, we went through a cold front and lots of rain.  Then, as we pulled in to Peoria, it started snowing!  Talk about a shock to the system!!

Just to give you a taste of spring, here is a photo of a tree that was just starting to bloom.

Speaking of spring and flowers, Stroke Camp is doing a fundraiser through the great folks at Flower Power. Click > here < to order your spring flowers and bulbs!  50% of all proceeds will go to Retreat & Refresh Stroke Camp.

Think Spring :-)

Sunday, March 24, 2013

Speech & Language Recovery Software for After Stroke, Aphasia or Brain Injury

by Chuck Jones

This week I'm going to give you a look at some software that we demonstrate at our camps. Marylee, the camp Executive Director, and her stroke survivor husband, John, are also using this software regularly to help John improve his communication skills. 

Go to HOME PAGE for Bungalow Software - Speech & Language RehabilitationBungalow Software gave me permission to put their product web page into this blog article complete with all their active links.
When you click on a link it will open a separate page, that is actually on their site, so that you can easily switch back and forth between it and this blog article. The page you open will stay open until you close it.

In this article, the products they offer are organized by a survivor's symptoms. Knowing your survivors and their needs, you should be able to match them with the categories listed below.

Speech therapy software, by symptom

Therapy software programs for your home computer or in the clinic following a stroke or brain injury. View them by symptom (below), with the easiest programs in each section listed first.

Therapy Categories (symptoms)

Articulation {Apraxia, Dysarthria} Speaking clearly.
  • Speech Sounds On Cue - Videos show patient how to say letters and words. For patients who benefit from watching your mouth model the sounds they are trying to repeat.
  • Sights'n Sounds 1 - Works on speech production and articulation at the word level. For patients who can repeat what you say (possibly with effort) without seeing your mouth modeling the word for them. Patients verbally names pictures, reads words aloud and repeats words they hear.
  • Sights'n Sounds 2 - For speech production and articulation at the sentence level.  Records patient's voice and plays it back along with a model sentence for comparison.
  • Numbers 'n Sounds - Speaking numbers out loud.
  • SpeechPacer - Helps to slow down (or speed up) patient's speech.

Word-Retrieval {Expressive Aphasia}

Thinking of the right word to say or write. 
  • Aphasia Tutor 1: Words  -Learning letters & words. Written naming. Also available in an Out Loud version that speaks the letters and words in a human voice.
  • Aphasia Tutor 2: Sentences -Sentence completion and word retrieval. Also available in an Out Loud version that speaks the sentences aloud in a human voice.
  • Sights'n Sounds 1 - Verbal naming (spoken word retrieval) and oral reading.
  • Sights'n Sounds 2 - For speech production and articulation at the sentence level.  Records patient's voice and plays it back along with a model sentence for comparison.
  • Numbers'n Sounds - Reading numbers aloud.
  • Synonyms, Antonyms, & Homonyms - Matching and written word retrieval.
  • Sentence Shaper 2 -our newest (and most challenging) program for aphasia. This helps patients turn halting, hesitant speech into conversational phrases and speeches.

Reading comprehension {Receptive Aphasia}

Auditory Comprehension

Auditory Processing Disorder

Read more about Auditory Processing Disorder

Auditory Discrimination

Thinking and Reasoning (Cognitive Therapy) exercises

Written Worksheets

Voice Assessment Tool

  • Speech Prism  - Helpful for vocal cord or voice pitch quality. It provides a visual display of what the voice looks like and is thus recommended for a patients with voice disorders who can not hear when they are voicing sounds correctly or not. 

Trial CD

Need help finding a program?

Bungalow's Therapy Advisor can suggest appropriate programs right now. Or contact us for help.

If you wish to visit their site directly their address is:  
This will take you directly to their Home  page. 

Sunday, March 17, 2013

Adaptive Equipment

by Chuck Jones

I've been thinking about adaptive equipment for stroke survivors for a while and wondering how to go about writing something up for the blog that would make sense and not overwhelm you readers with too much detail.

I wanted to come up with a list of equipment that I thought would be useful to a stroke survivor but, since I have no firsthand experience with that, the best I could do was scour the internet for adaptive equipment web sites and see what is being offered. I was surprised with the amount of items that are available.

Those of you who are stroke survivors or caregivers know firsthand how difficult it is to adapt to missing or impaired motor skills on one side of the body. How difficult it is to try to live a daily life with the use of only one hand and to move about with only one leg working. The difficulty may be even more amplified if the affected side is the one that used to be the dominant one. 

There are so many daily two handed, two legged tasks that we take for granted: eating, tying shoe laces, removing the lid from a jar, cutting a piece of meat, getting in and out of a car seat, taking a bath, putting your clothes on, using a restroom...the list goes on. I'm sure you can add a dozen more daily tasks that are impossible or nearly so after experiencing a stroke.

While there is no one-hundred percent substitute for pre-stroke skills, there are tools in existence today - we're calling them adaptive equipment - that can help a stroke survivor gain more independence. That's what I want to share with you today.

One of the many perks you get attending one of our camps is that sometimes you might get to see adaptive equipment demonstrated. I have seen adaptive equipment demos at some of the Retreat & Refresh stroke camps I've attended, and most of them were fascinating - ingenious, I should say (and some even made me scratch my head and wonder why I didn't think of that) - but the number of items presented at camp are nowhere near what is at your fingertips on the internet. 

However, at the same time, there were things demoed at camp that I have not found on the internet, yet. For instance, the camp has a device that allows a fisherman to tie a fishing line onto a hook with one hand. I have not seen anything like that on the sites I looked at for this blog article. However, I need to add that I never saw any of our campers use that device because our volunteers are more excited about assisting the campers with fishing than they are to be fishing themselves. The camp also has an electric fishing rod and reel that can be cast with one hand and reeled in with the push of a button. A variation of this one I did see on the adaptive recreational web site.

To help with my search, Marylee, our camp Executive Director, gave me a document she prepared titled "Resources for Families of Stroke Survivors". It contains a list of about twenty addresses of web sites that provide either stroke information or products available to assist stroke survivors and their caregivers. I picked out six sites that were emphasizing products for disabled customers. I am sure there are many many more sites that could have been on this list but these are the ones we know about at this time. If you know of any others that you like, please let us know so we can include them, too.
One website has twenty-three major categories of adaptive equipment, such as: Car, Bathroom, Memory, Toilet, Bedroom, Kitchen, to mention just a few, and each of those categories contained several items. I think it is safe to say there are over a hundred items being offered at just this one web site alone. While browsing other sites, I noticed many of the same items being offered, even the same brands, but there are still many that are unique to their site.

I thought about including some pictures here but after trying to include a few, I realized I couldn't do enough of them or do them justice, so what I'll do is include the six links that I visited and you can go look for yourself. You'll get better descriptions and prices than I can provide in this limited space:  - Daily Living Aids for In Home Care. This site has many useful products for the kitchen, around the house, on the move, and for your comfort.   - Making Living at Home a Little Easier. This site is the one with twenty-three different categories I mentioned earlier in this article.   - Lifestyle Products, Disability Aids and Independent Living Aids. This site has helpful products for independent living as well as some rehab and recovery ones.   - Access to Recreation. While this site has products to assist outdoor activities as well as indoors, it also has a lot of aids for daily living as well. It even has some adaptive equipment for sports activities such as golf and fishing.   - This site is a huge online catalog store with many products and gadgets and some categories with adaptive equipment.  - Adaptive Driving Marketplace. This site has wheelchair vansscooter and wheel chair lifts, turning auto seating, steering controls, ramps. You can buy or rent wheel chair vans here.

I hope you find these few sites useful. There certainly are enough products available on these six sites alone to keep you searching for hours. If you have any other sites you think we should visit pertaining to stroke survivors needs please let us know. If you have a specific need and can't find any information about it let us know that, too. Maybe we can help or find someone who can. Use the "Contact Us" link in the list of links at the left of your screen.  

Sunday, March 10, 2013

Artist Stacy Gupton - Survivor Story

by Chuck Jones

 First, some Announcements:
                             Flower Power is back. Click here >> RRSC Flower Power
                             Strike Out Stroke at Peoria Chiefs game is scheduled for May 23rd
                             New camp schedule for 2013 is out. Click here >> Camp sched

Introducing Stacy

Stacy Gupton is a Wyoming native, cowgirl, and 10 year, post stroke survivor. She suffered a massive hemorrhagic stroke in 2003 when she was a 21 year old college junior majoring in art education. She has been one of our RRSC Campers for the last three years, soon to be four. While Stacy has been living independently for some time now,  her mother, Mona, serves as her caregiver at camp.  

This is Incredible and I Think You'll Agree

Recently, Stacy was commissioned by Wyoming AgrAbility in Laramie to do 12 paintings that they could use to make a calendar. They needed a Wyoming artist, with knowledge of agriculture and a disability. They were looking for someone who could paint original one-of-a-kind images that capture what is uniquely Wyoming - its beauty, its people, and its agriculture. Stacy was perfect for the job. I couldn't get all 12 of her paintings into this article but I can tell you the other six are just as good as these and each one has its own story and special meaning to Stacy. 

AgrAbility is a strong partnership among the University of Wyoming Extension, Wyoming Institute for Disabilities, Wyoming Independent Living Rehabilitation, and Wyoming Services for Independent Living. Through this partnership, Wyoming AgrAbility pools resources in independent living, assistive technology, and production agriculture for individuals and their families engaged in ranching, farming, or farm-related activities that have been affected by a disability, limitation, or injury.

Building on this partnership, plus a nationwide network of state AgrAbility projects, Wyoming AgrAbility offers services and support for increasing self-sufficiency and independence. For more info click on this link > Wyoming AgrAbility

Following is the preface taken from the calendar:

The Stacy Gupton Story

A Wyoming native, Stacy lives in Laramie. The youngest of four sisters, Stacy spent her childhood on ranches in Wyoming, Nebraska, Montana, and Colorado. Her cowgirl spirit runs deep, and many members of her large extended family still call "cowboy" their profession. As a youngster, Stacy competed in rodeo - goat tying, barrel racing, and cutting. While she would have preferred to stay on her horse or in the barn instead of being forced to attend school, Stacy discovered another passion as soon as she began her kindergarten art class.

Stacy entered the University of Wyoming in 2000 as an art education major. Life took a drastic turn in April 2003 when the 21-year-old college junior suffered a massive hemorrhagic stroke in the right hemisphere of her brain - her artistic center. Stacy's family was warned that, if she survived, she would no longer be the artist she had been. After three brain surgeries, months of acute care, and intense in-patient rehabilitation, Stacy returned home to a life forever changed. With the unwavering support of her family, Stacy fought to regain functionality and to heal her brain, body, and soul. Through her determination, she returned to the University of Wyoming a few short weeks after her hospital release and graduated in December 2008.

Stacy continues to explore her artistic talents and astounds those who doubted her ability to do so. On any day she can be found in her studio working on a painting or a sketch of whatever grabs her attention. Stacy is an advocate for stroke education and shares her story of stroke survival with prople of all ages. In 2009, she and her mother, Mona, wrote a book about her stroke and journey and renewal. Entitled "A Piece of Her Mind", the book is available from Xlibris Publishing >> When you get to this book site, type the title into the search box at the top right of the page and click go.

In Her Own Words - Artist's Reflection

"I was incredibly honored to contribute to this calendar. Art has always been a passion of mine. Since my stroke, it has also been my outlet - a way for me to deal with the aftermath of what happened to me. I prefer not to refer to myself as a disabled artist. Yes, I have a disability, but it does not define who I am or what I can do. Everyone has something about them that makes them different - my differences are just more visible than others. I describe myself as a sister and aunt, a comedian at times, an artist, a cowgirl, a true friend, and as a side note, a survivor."

"All of the paintings for this calendar hold special significance for me, but a couple of them stand out. My favorites are the old tractor and the barn in winter."

"I could picture myself on the grey horse in the Powder River hills and almost smell the sagebrush." (C's ed note: This painting is also the cover of the calendar)

"The most difficult one for me to paint was the wheelchair and saddle. I had to walk away from that one several times before I could finish it. The concept was so personal - almost too emotional for me to put on canvas. It reminded me of my former life and all that has changed since my stroke but it also reflected hope. Getting back on a horse after my stroke was as theraputic as entering my studio."

"If I could offer words of advice to people who experience a life-altering illness or injury, it would be this - a changed existance can still be rewarding. I won't lie and say life with a disability is easy. It can be damned hard at times. You need to aim high and keep your focus on what's important. Never say never. Get up, dust yourself off, and keep going."
-Stacy Gupton

I want to give special thanks to Stacy's mom, Mona Gupton, for sending me one of her calendars so that I could do this blog article. The calendars mentioned in this article are not for sale nor are they available for general distribution. While Stacy still retains ownership of the original paintings, the calendars are the property of and for the sole use by Wyoming AgrAbility. 

I hope you agree with me that Stacy has a definite talent and I hope she continues to let it develop. After all she has experienced it still shows through.  

Before I end this blog article I'd like to point out my second favorite painting of Stacy's. (The first being the winter scene with the horse drawn sleigh you saw up front.)

This painting on the left depicts the fortitude that this young lady has. I'm not going to tell you her interpretation of it. Maybe you can figure it out on your own, maybe not, but you'll have to find out for yourself by going to the following link and watching her brave heartwarming story: Click here > Stacy's Video


Sunday, March 3, 2013

Strike Out Stroke May 23, 2013

by Retreat & Refresh Stroke Camp

 After you read this posting go here to see the actual Strike Out Stroke (TM) event:

       New camp schedule for 2013 is out. Click here >> Camp sched

Community Stroke Awareness with Strike Out Stroke™
With the
Peoria Chiefs and Retreat & Refresh Stroke Camp
May 23, 2013

In 2013, an estimated 795,000 people in the United States will suffer a stroke, a condition in which the brain cells suddenly die because of a lack of oxygen. The degree to which their lives will be impacted is often a matter of awareness of the signs of stroke and the speed at which they receive treatment. 

Retreat & Refresh Stroke Camp, (RRSC), a 501(c) (3) nonprofit organization, organizes camps across the country for stroke survivors and their families, is at the forefront of raising public awareness for the symptoms of stroke and the urgency through Strike Out Stroke™ events.

In addition to Minor League Baseball, Strike Out Stroke™ events have been developed by RRSC in major markets across the U.S. in conjunction with select Major League Baseball Clubs. In each participating market, RRSC and the Club designate one game during the season to be Strike Out Stroke Day. With the participation of local stroke care providers, an event-based marketing platform is created to generate high profile awareness and game day activities to promote stroke awareness, and as a celebration of recovery for stroke survivors, their families and care providers.

Strike Out Stroke™ Day
This year, Strike Out Stroke™ Day will be held on Thursday, May 23 with the Peoria Chiefs in Peoria, Illinois. Retreat & Refresh Stroke Camp is organizing and implementing all local arrangements with the Club including the selection of the date, associated promotional and recognition rights, hospitality benefits, pregame field activities and in-game signage and audio acknowledgment. 

If you would like to be a sponsor of an event please use the contact info at the end of this page.

Sponsors will share the following elements:
- Advance public relations activities with city officials, Club mascot, survivors, stroke care providers, sponsors to promote stroke awareness.

- Gate promotion (e.g. stroke education to spectators as they arrive)
Pregame on-field VIP activities such as special introductions, first pitch, Dream Team and entrance of the LifeFlight helicopter (weather permitting) with stroke survivors, care givers and sponsor VIPs.
- Scoreboard and audio recognition of SOS Day, special guests and sponsors.
- Banners located in strategic locations in ballpark.
- RRSC newsletter and website exposure ( and
- Event shirts.
- MEGA Brain and Stroke Learning Center Exhibit (Based on availability)

Featured Benefits for Sponsors Based on Level of Sponsorship
- Ad exposure as Peoria Chiefs expects 4000+ people in attendance
- Civic exposure to 750 5th grade students in 10 intermediate local schools in 30 classes
- Recognition on Strike Out Stroke Event Shirts
- Recognition on all press releases and printed material
- Maximum exposure during pregame activities
- Prominent exposure on ballpark banners
- Exposure through Social Media
- Recognition on promotional brochures and posters distributed throughout community
- Recognition on Public Service Announcements and other promotional advertising
- Access to Skyview Hospitality Suite

For more information, contact:
Retreat & Refresh Stroke Camp
866-688-5450 (M-F 8-5 CST)