Sunday, July 27, 2014

Strike Out Stroke July 2014 Update

                        Thank You Genentech!

Because of you...
To date we are half way through our National Stroke awareness campaign.

• 11 Major league Strike Out Stroke events across the country.
• Over 600,000 fans have heard the F.A.S.T. message at their local baseball stadium.
• Over 50 stroke centers/hospitals have been involved.
• 11 first pitches’ thrown by stroke survivors of all ages!!
• Over 500 hundred volunteers across the country have “stepped up to the plate” to Strike Out Stroke!
• Thousands of F.A.S.T message T-shirt's and magnets are now being worn and hanging on refrigerators across the country!!!
Thank you Genentech, because of you we are Striking Out Stroke and saving lives!

Strike Out Stroke™ is a powerful campaign to combat stroke and its devastating effects. In cooperation with
Professional Baseball, SOS is a national campaign raising awareness about the warning signs and risks of stroke.

Strike Out Stroke Days are fun, impactual events presented at Major and Minor League stadiums, educating thousands of people about the symptoms of stroke through an increased awareness of the FAST concept.

Stroke Survivors and Caregivers are critical SOS Event partners in educating about stroke and its effects by telling their stories of recovery and demonstrating, by example, life after stroke. Here are but a few of the amazing people that have shared their stories:

Karen Dionne threw out the First Pitch for the Seattle Mariners
Strike Out Stroke Event. At age 37, Karen suffered a life threatening
stroke. Fortunately, her fiancée, now husband, Michael, recognized
her stroke symptoms and quickly sought emergency services. The
stroke left Karen without feeling on her entire left side, and she
had to re-learn to walk. With hard work and determination, she
was able to walk down the aisle for her wedding four months after
her stroke. Karen founded a support group for young adult stroke
survivors called Reclaiming Ourselves (
Ourselves), an online young adult stroke support group. Over
a thousand young adult stroke survivors from around the world
participate, providing peer support and encouragement for each
other’s successes. Karen states, “I don’t limit myself. Most of us let
the fear of not succeeding at something, hold us back from trying.
Keep pushing to the next finish line. There’s no end to our potential.”

Bill Allocca suffered his stroke three years ago
and as a result of FAST recognition of his symptoms
and immediate treatment, Bill functions today with no
physical, speech or cognitive disabilities. He recognizes
how blessed he is to have received timely treatment
and as a result is strong FAST education advocate and
volunteer. “I just believe in the cause .....if it wasn’t for
how fast my medical team helped me, I would not be
here!” Bill has participated in Stoke Awareness Walks,
Atlanta Braves Strike Out Stroke Events and he volunteers
at a Critical Care Stroke Center as a peer counselor for
new stroke survivors and their caregivers.

On Christmas Day, 2013, Kevin Sheehan, 49, suffered a
stroke. Family members recognized the symptoms of his stroke and
called 911. His stroke has left him with paralysis on his left side. Kevin
owns a landscaping company and is now back at work supervising
project installations and is in ongoing physical therapy. Kevin says “It is
all about hard work”. As one who loved to play softball and baseball
and as a baseball fan, Kevin was thrilled to have an opportunity to
throw out the first pitch for the Colorado Rockies SOS Event and to
educate baseball fans about the FAST symptoms of stroke.

And here s my favorite: Twins First Pitch Stroke survivor, Emma Friesen

In addition to major league baseball, there are numerous Strike Out Stroke™ events across the country in minor league communities. For more information, explore and be sure to “like” Strike Out Stroke™ on Facebook. For questions and interests in sponsoring a Strike Out Stroke™ event in your community, contact Larry Schaer, Associate Director at 1-866-688-5450 or Through working together, we can Strike Out Stroke! Strike Out Stroke™ is a division and registered trademark of Retreat & Refresh Stroke Camp.


May 4 Atlanta Braves
May 6 Pittsburgh Pirates
May 8 Texas Rangers
May 10 San Diego Padres
May 15 Minnesota Twins
May 17 New York Yankees
May 17 Colorado Rockies
May 24 Cincinnati Reds
May 30 Arizona Diamondbacks
May 31 Seattle Mariners
June 1 Chicago White Sox
June 14 Houston Astros
July 5 Anaheim Angels
July 13 Baltimore Orioles
August 14 Boston Red Sox
August 17 Washington Nationals
August 24 LA Dodgers
August 31 St. Louis Cardinals
September 4 Milwaukee Brewers

And, the list is still growing!

Sunday, July 20, 2014

Director’s Corner - July/August Newsletter

Boy, exciting things are happening for Retreat & Refresh Stroke Camp! The camp season has started and we’ve had a blast with the 50’s Rock ‘n Roll theme. Everyone seems to know at least some of the music from that era. Hula hoops, bubble gum, saddle shoes, and car hops help us to really rock it out this year. This year we will complete 20 camps which will bring our total since that first camp in 2004 to over 100 ! It is also exciting to report our overwhelming success with the Strike Out Stroke events that have been held already this year. These events allow us to get the F.A.S.T. message out to the masses (see related article in this newsletter). We have 11 down and seven (7) to go. We hope to grow these events even more next year.

Finally, I am thrilled to report that our corporate office has moved. We have found new office space where everything will be under the same roof. For several years, we have had things in four different places around town. When preparing for our camps, it requires going from place to place in order to gather all we need. Having everything under the same roof will be amazing. For the time being, our mailing address will remain the same. We have lots of work to do before the camp season gets crazy busy, but it will be well worth it. Next newsletter we will post some photos, especially Lauren near her window, the biggest criteria for our new space!
Marylee Nunley,
Executive Director


Now introducing the 2014 line of Stroke Camp and Strike Out Stroke™ merchandise! 

Strike Out Stroke™ shirts are $15 for M-XL $17 for 2XL and (bulk pricing available-call for more information) 

Hats are $20 each. 

The Stroke Camp merchandise this year is a zip-up hoodie in your choice of either white or light steel. Hoodies are $40 for S-XL and $45 for 2XL and 3XL. 

We will be bringing the zip-up hoodies to each of the camps to sell; however, order now if you want to guarantee your size and color. 

Order yours today at

Peoria, IL Area News

Fifth Grade Education - On June 1, we had our annual Strike Out Stroke game with the Peoria Chiefs. It was a great success! There were EMS personnel on hand, as well as many stroke survivors and caregivers. Fans in attendance received FAST magnets, cards, and stickers, and throughout the game, were educated on how to recognize a stroke. The winner of our fifth grade stroke poster contest, Slade Mulvaney from Beverly Manor in Washington, IL flew in the OSF LifeFlight helicopter, landed in centerfield, and threw out the first pitch of the game! Survivors made up the Dream Team and got to go on the field prior to the start of the game.
We would like to extend a big thanks to Genetech, a Member of the Roche Group for their help in sponsoring this event. 

We would also like to thank the following for being inning sponsors:

 Mid Illinois Co., 
Standard Heating & Cooling, 
Peoria Logo, 
Total Income Tax,, 
C.T. Gabbert Remodeling & Construction, 
Legacy Insurance, 
Lawns R Us, and 
Barracks Cater Inn  

Each time the Chiefs struck out a Cougar in the businesses respective inning, that business donated $50 to Retreat & Refresh Stroke Camp!


Sunday, July 13, 2014

RRSC Stroke Learning Center

Retreat & Refresh Stroke Camp presents 
The Stroke Learning Center

Stroke is the fourth leading cause for death in the United States, cutting short the lives of over 133,000 people each year. It ranks as the number one leading cause of serious, long-term adult disability. There are definite steps you can take to prevent or at least reduce your chance of experiencing a stroke. Should a stroke occur, there are steps you can take to minimize its long term effects and improve your recovery. Retreat & Refresh Stroke Camp is committed to teaching the public about stroke and, in turn, improving outcomes through their knowledge of the appropriate action to take.

Retreat & Refresh Stroke Camp, headquartered in Peoria, Illinois, has designed and developed an educational tool called The Stroke Learning Center to promote stroke awareness and education. This tool consists of six ten-inch electronic tablets containing a quiz targeting the most important and frequently asked questions pertaining to stroke awareness. The Stroke Leaning Center is usually set up in conjunction with the MegaBrain exhibit at pro baseball games, convention centers, shopping malls and other similar venues. 

It is the goal of The Stroke Learning Center quiz is to raise awareness through the answers to questions which in turn, educate the public on ways to minimize the chance of getting a stroke, how to recognize the onset of its symptoms, as well as how to reduce its long term effects should such an event occur. The Acronym F.A.S.T. often used in National Stroke Association venues and many other organizations working with stroke issues is also used throughout the quiz to help the quiz taker recognize and remember these signs.

The current version of The Stroke Learning Center quiz is presented in English and Español, and consists of fourteen questions designed to raise awareness. It also offers preventative measures so participants learn how to recognize the symptoms of a stroke and the appropriate response.

Each question offers five possible answers that are presented on a touch screen ten inch tablet. The quiz taker touches the answer that they think best answers the question. Once the question is answered correctly, the next question appears. Even selecting the incorrect answer is a learning experience because any answer chosen results in a detailed explanation.

And now a glimpse into just how The Stroke Learning Center App works.

The first screen gives you a choice of which language you wish to use. Currently, only English and Espanol are available. 

You then proceed through the fourteen questions. Here is a sample of one of the questions:

If you select a wrong answer you will be shown the following screen, for example, and after touching the continue button, sent back to the question for another try:

When the correct answer is chosen, the following screen is presented and, after touching the continue button, the quiz proceeds on to the next question:

Upon completion of the quiz, a screen depicting the acronym F.A.S.T is presented to keep it fresh in your mind:

Finally, a screen is presented showing how well you did answering the questions:

Often, depending on the event attended, the participant is awarded a stroke related gift after completing the quiz.

Also included with the quiz is an app for the presenter to use to obtain aggregate statistical information on how the quiz takers did on that particular tablet. This information can be used by the exhibitor to determine which questions were answered incorrectly the most often and which incorrect answers were chosen. This will help the presenter determine where more emphasis should be placed in educating the public.


Sunday, July 6, 2014

What Do Baked Potatoes Have To Do With Stroke

The following was taken from AARP's online blog:

Click on the red words for more detail from the AARP site.

Originally Posted on 09/1/2011 by Candy Sagon |Personal Health and Well-being

New research indicates that if older adults want to lower their risk of getting a stroke, one of the best things they can do is eat more high-potassium foods.

That would be things like baked potatoes with the skin, cooked spinach, orange juice, bananas, yogurt, acorn squash, raisins and beans.

People whose diet contains plenty of these foods may be less likely to suffer a stroke than those who get little of the mineral, according to a recent study reported in the journal Stroke. The Swedish researchers analyzed 10 international studies involving more than 200,000 middle-aged and older adults.

An even larger analysis, published last year in the British Medical Journal, found a similar effect: A higher potassium intake decreased stroke risk by 24 percent in people with high blood pressure. All that was needed was an extra two to three servings of fruits or vegetables a day.

High quality evidence shows that increased potassium intake reduces blood pressure in people with hypertension and has no adverse effect on blood lipid concentrations, catecholamine concentrations, or renal function in adults. Higher potassium intake was associated with a 24% lower risk of stroke (moderate quality evidence). These results suggest that increased potassium intake is potentially beneficial to most people without impaired renal handling of potassium for the prevention and control of elevated blood pressure and stroke.

In the Swedish study, researchers found that stroke risk decreased as people’s reported potassium intake went up. For every 1,000 mg. increase in daily potassium, the odds of suffering a stroke in the next five to 14 years dropped by 11 percent.

A second Swedish study examining the relationship between stroke risk and potassium in older women found similar results. Published in the American Journal of Epidemiology, it found that among women ages 49 to 83 with a history of high blood pressure, a lower risk of stroke was linked to a diet high in potassium.

The lead researcher in both Swedish studies, Susanna C. Larsson of the Karolinska Institute in Stockholm, says the findings don’t prove that it’s potassium alone that produces the positive effect, because high-potassium foods are generally healthy ones, “but (the findings) strengthen existing evidence that it might,” she told Reuters.

Potassium is an electrolyte needed for maintaining the body’s fluid balance and is involved in blood pressure regulation.

Potassium’s effect was specifically linked to a reduced risk of ischemic strokes, the ones caused by a blockage in an artery to the brain. Ischemic strokes account for about 80 percent of all strokes.

The U.S. Department of Agriculture’s dietary guidelines recommend that adults get 4,700 mg. a day of potassium from food. The average American, according to some nutrition surveys, gets only about 2,600 mg.

Some people need to be careful about potassium, however, including those with kidney disease, or who are on certain blood pressure drugs. Talk to your doctor.

Here are some potassium-rich foods:

Acorn squash, cooked, 1 cup: 896 mg.

Baked potato with skin: 844 mg.

Spinach, cooked, 1 cup: 838 mg.

Lentils, cooked, 1 cup: 731 mg.

Kidney beans, cooked, 1 cup: 713 mg.

Split peas, cooked, 1 cup: 710 mg.

Sweet potato, baked: 694 mg.

Butternut squash, cooked, 1 cup: 583 mg.

Raisins, 1/2 cup: 553 mg.

Avocado, 3 ounces: 540 mg.

Yogurt, low-fat, plain, 1 cup: 531 mg.

Halibut, cooked, 3 ounces: 490 mg.

Banana, medium: 451 mg.

Cantaloupe, 1/4 : 412 mg.

Rainbow trout, farmed, cooked, 3 ounces: 382 mg.

Orange juice, 3/4 cup: 355 mg.

Milk, low-fat, 1 cup: 348 mg.

Broccoli, cooked, 1 cup: 332 mg.

Sunday, June 29, 2014

Stroke 101 Fact Sheet

The content of this fact sheet came from the National Stroke Association web site:  
Click on the link for "What Is A Stroke" at the top of their page and there you will see another link to download it if you want to help spread the word.

All of you RRSC Campers already know this stuff but I'm hoping to reach those readers who have not yet been exposed to strokes or stroke survivor/caregiver life. This blog gets over one thousand hits a month so I'm hoping to increase that awareness.

Stroke 101 Fact Sheet

Stroke is an emergency and a brain attack, cutting off vital blood flow and oxygen to the brain.

In the United States, stroke is the fourth leading cause of death, killing over 133,000 people each year, and a leading cause of serious, long-term adult disability.

There are an estimated 7,000,000 stroke survivors in the U.S. over age 20.

Approximately 795,000 strokes will occur this year, one occurring every 40 seconds, and taking a life approximately every four minutes.

Stroke can happen to anyone at any time, regardless of race, sex or age.

From 1998 to 2008, the annual stroke death rate fell approximately 35 percent, and the actual number of deaths fell by 19 percent.

Approximately 55,000 more women than men have a stroke each year.

African Americans have almost twice the risk of first-ever stroke compared with whites.

Types of Stroke

Ischemic stroke occurs when arteries are blocked by blood clots or by the gradual build-up of plaque and other fatty deposits. About 87 percent of all strokes are ischemic. 

Hemorrhagic stroke occurs when a blood vessel in the brain breaks leaking blood into the brain. Hemorrhagic strokes account for thirteen percent of all strokes, yet are responsible for more than thirty percent of all stroke deaths. 

Two million brain cells die every minute during stroke, increasing risk of permanent brain damage, disability or death. Recognizing symptoms and acting FAST to get medical attention can save a life and limit disabilities. 

The prevalence of transient ischemic attacks (TIA – “mini strokes”) increases with age. Up to 40 percent of all people who suffer a TIA will go on to experience a stroke. 

Women are twice as likely to die from stroke than breast cancer annually. 

The estimated direct and indirect cost of stroke in the United States in 2010 is $73.7 billion.

Stroke is an Emergency. 
Call 9-1-1. 

Few in the U.S. know the warning signs of stroke. Learning them – and acting FAST when they occur – could save your life or the life of a loved one. Do not ignore the following signs thinking stroke will go away. It Won't.

Use the FAST test to remember warning signs of stroke.

F = FACE     Ask the person to smile. Does one side of the face
A = ARMS    Ask the person to raise both arms. Does one arm
                      drift downward?
S = SPEECH Ask the person to repeat a simple sentence. Does the
                      speech sound slurred or strange?
T = TIME      If you observe any of these signs (independently or
                       together), call 9-1-1immediately.

Reducing Stroke Risk

Many risk factors are beyond your control, including being over age 55, being a male, being African-American, having diabetes, and having a family history of stroke. If you have one or more of these risk factors, it is even more important that you learn about the lifestyle and medical changes you can make to prevent a stroke. However, everyone should do what they can to reduce their risk for stroke – learn more by reading and following the Stroke Prevention Guidelines below.

Medical stroke risk factors include:

Previous stroke, previous episode of TIA (or mini stroke), high cholesterol, high blood pressure, heart disease, atrial fibrillation and carotid artery disease. These risk factors can be controlled and managed with the help of a healthcare professional.

Lifestyle stroke risk factors include:

Smoking, being overweight and drinking too much alcohol. You can control these risk factors by quitting smoking, exercising regularly, watching what and how much you eat and limiting alcohol consumption.

Stroke Prevention Guidelines

1. Know blood pressure (hypertension). High blood pressure is a major stroke risk factor if left untreated. Have blood pressure checked yearly by a doctor or at health fairs, a local pharmacy or
supermarket or with an automatic blood pressure machine.

2. Identify atrial fibrillation (Afib). Afib is an abnormal heartbeat that can increase stroke risk by 500 percent. Afib can cause blood to pool in the heart and may form a clot and cause a stroke. A doctor must diagnose and treat Afib.

3. Stop smoking. Smoking doubles the risk of stroke. It damages blood vessel walls, speeds up artery clogging, raises blood pressure and makes the heart work harder. Stopping smoking today will immediately begin to decrease risk.

4. Control alcohol use. Alcohol use has been linked to stroke in many studies. Most doctors recommend not drinking or drinking only in moderation – no more than two drinks each day. Remember that alcohol can negatively interact with other drugs you are taking.

5. Know cholesterol levels. Cholesterol is a fatty substance in blood that is made by the body. It also comes in food. High cholesterol levels can clog arteries and cause a stroke. See a doctor if your total cholesterol level is more than 200.

6. Control diabetes. Many people with diabetes have health problems that are also stroke risk factors. Your doctor can prescribe a nutrition program, lifestyle changes and medicine to help control your diabetes.

7. Manage exercise and diet. Excess weight strains the circulatory system. Exercise five times a week. Maintain a diet low in calories, salt, saturated and trans fats and cholesterol. Eat five servings of fruits and vegetables daily.

8. Treat circulation problems. Fatty deposits can block arteries carrying blood to the brain and lead to a stroke. Other problems such as sickle cell disease or severe anemia should be treated.

9. Act FAST at the first warning sign of stroke. If you have any stroke symptoms, seek immediate medical attention.


Sunday, June 22, 2014

Thoughts That Can't Be Spoken

New York Times SundayReview


MONDION, France — ONE early evening a week before last Christmas, I sat down at my desk to answer a letter. But just as I was about to write the first words, I felt as if they were escaping me, vanishing into air before reaching the paper. I was surprised but not concerned. I was very tired and promised myself to stop work after finishing the note.

Trying to concentrate harder, I attempted to form in my mind the sentence I was supposed to write. But while I knew the gist of what I wanted to say, the sentence would not take shape. The words rebelled, refused to do as I asked them; unlike Humpty Dumpty, who tells Alice that when using words, “the question is which is to be the master — that’s all,” I felt too weak to give the elusive words orders that they would be required to follow.

At last, after much mental strain, I managed to string a few words together and set them down on the page. I felt as if I had been groping in an alphabet soup for the words I needed, but as soon as I put in my spoon to grab a few, they would dissolve into meaningless fragments. I tried to tell my partner that something was wrong, but I discovered that I was unable to mouth the words, except in a protracted stutter. He called for an ambulance, and an hour later I was in an emergency room being treated for a stroke.

To prove to myself that I had not lost the capacity for remembering words, only that for expressing them, I began to recite in my head bits of literature I knew by heart. Thankfully, the flow was easy: Poems by St. John of the Cross and Edgar Allan Poe, chunks of Dante and Victor Hugo, doggerel by Arturo Capdevila and Gustav Schwab echoed clearly in the darkness of my hospital room. The ability to read never left me, and a few hours later, I found that I was again able to write. But when I tried to speak to the nurses, the stammer persisted. Only after four or five weeks of hesitant speech did it disappear.

The experience, while terrifying, made me reflect on the relationship between thought and language. If thought, as I believe, forms itself in the mind by means of words, then, in the first fraction of a second, when the thought is sparked, the words that instantaneously cluster around it, like barnacles, are not clearly distinguishable to the mind’s eye: They constitute the thought only in potential, a shape underwater, present but not fully detailed. When a thought emerges in the language of the speaker (and each language produces particular thoughts that can be only imperfectly translated), the mind selects the most adequate words in that specific language, to allow the thought to become intelligible, as if the words were metal shavings gathering around the magnet of thought.

A blood clot in one of the arteries that feeds my brain had blocked for a few minutes the passage of oxygen. As a consequence, some of my brain’s neural passages were cut off and died, presumably ones dedicated to transmitting electric impulses that turn words conceived into words spoken. Unable to go from the act of thinking to its expression, I felt as if I were groping in the dark for something that crumbled at the touch, preventing my thought from forming itself in a sentence, as if its shape (to carry on with my image) had been demagnetized and was no longer capable of attracting the words supposed to define it.

This left me with a question: What is this thought that has not yet achieved its verbal state of maturity? This, I suppose, is what Dante meant when he wrote that “my mind was struck / by lightning bringing me what it wished” — the desired thought not yet expressed in words.

Under normal circumstances, the progress from the conception of a thought in the specific linguistic field of the thinker to its verbal constellation, and on to its expression in speech or in writing, is instantaneous. We don’t perceive the stages of the process, except in half-dreams and hallucinatory states (I experienced this when, in my 20s, I experimented with LSD).

Unable to put my thoughts into words, I tried to find synonyms for what I knew I was trying to say. Again, a simile might help: It was as if, traveling down a stream, I had come to a dam that blocked my way and sought to find a side canal to allow my passage. For instance, in the hospital, discovering that it was impossible to say, “My reflective functions are fine, but I find speaking difficult,” I managed to blurt out to the doctor: “I have words.”

I experienced the expression of negatives as especially difficult. In my slowed-down mental process, if I wanted to say, in answer to the nurse’s question, “I don’t feel pain,” I found myself thinking “I feel pain” and adding “no” to the affirmative sentence. Accustomed to my normal rhythm of speech, I would try to answer at once, but the words would come out as “of course” or “yes” before I had time to frame my thought in the appropriate negative. It seems that in my mind, affirmation precedes negation.

Perhaps, I said to myself afterward, this is how one’s literary style works: finding the right waterway, not because of any blockage of the verbal expression but because of an aesthetic sense that chooses not to take the commonplace main course (“The cat is on the mat”) but a personal side canal (“The cat slumbers on the mat”).

Lying in the hospital, allowing my brain to be scanned in coffinlike machines, I reflected on the fact that our age has allowed our curiosity a capacity that medieval theologians believed impossible, except for God: the observation of our observing, the ability to be both audience and performer of our intimate mental acts — holding, as it were, our soul in our hands.

Now, after my stroke, I try to make myself aware of the path my thoughts travel before transforming themselves into words on the page. I try, but it’s all too quick. My thoughts outwit me.

Alberto Manguel is an Argentine-born Canadian writer, translator and editor, and the author, most recently, of “The Traveler, the Tower and the Worm.”

A version of this op-ed appears in print on March 9, 2014, on page SR8 of the New York edition with the headline: Thoughts That Can’t Be Spoken. 

Sunday, June 15, 2014

From a Brain Kept Running

At least one of our camp volunteers left her brain running last weekend when she should have been sleeping. And, this is what happens. If you are "Friends" with Monica Vest Wheeler, you've probably already read this on her FaceBook page. I did, and I was touched by it, so I thought her late night thoughts were worth sharing with the rest of you.

by Monica Vest Wheeler
An online discussion group topic on traumatic brain injury(TBI) had me typing in the middle of the night … so what else is new … Thought I'd share my thoughts on this issue before I go back to sleep …

This reaffirms what I learn from TBI survivors and caregivers as I'm focusing on creating upcoming books and related materials on coping with the emotional and everyday challenges of TBI. It affects not only the person with TBI but everyone around them. This is true with virtually all brain-related injuries, illnesses and diseases. I've learned this from my writing on Alzheimer's and being a caregiver for my father-in-law a few years ago, when he was diagnosed with Alzheimer's, which we learned after his passing was actually vascular dementia.

I've attended about 50 Retreat & Refresh Stroke Camps as a volunteer — where I am this weekend in Illinois. I've been attending some TBI camps in the last few years and will go to at least five this year, including a children's TBI camp this coming week in PA.

I've heard just about everything as I lead survivor or caregiver discussion groups at Stroke Camp and interact with survivors and caregivers in other ways around the country … from the hopes to the frustrations, from the lack of public understanding to the intense social isolation, from pure love to the joys of the simplest things in life. The same is true for those affected by TBI.

We often hear and speak about the "new normal" after a brain "event." Most people don't get that that "new normal" is constantly redefined as the brain reconstructs or adjusts itself every second. And there is a great deal of impatience and misunderstanding about fatigue, often viewed as laziness or a way to command sympathy. I've witnessed the intense pain and tears of so many survivors whose families belittle or ignore them or focus only on their INabilities or DISabilities.

Though medication alleviates many of the challenges I face with the depression I've lived with for many years, I understand that my brain gets tired more easily, and my body does, too. God bless my husband for understanding that there are days when I just need to sleep or "chill" or I'm not going to be MY best … which is the "best" for him and everyone I love

Brain injuries, illnesses and diseases ARE a human tragedy, and each of us has a chance to rewrite that script for better understanding and compassion. Communication is the biggest key to promoting that connection … survivors and caregivers and families talking, listening, observing and learning from each other the challenges each face in coping with the changes. That connection is a powerful force in healing bodies, brains and relationships.

Nearly everybody fears what they cannot control or fully understand, and the human brain is the one of the scariest unknowns in the universe. Even "normal" people have bad days when their brains are simply tired or are trying to process too much. We are surprised when the person who always has a steady positive attitude snaps at us. Alas, each of us is human

Thanks for setting my brain "on fire" enough to write this in the middle of the night … now back to sleep for another exciting day at Stroke Camp!


Sunday, June 8, 2014

Living up to your potential?

The following article is taken from the Strokenetblog website: 

It was written by Steve Mallory, President & CEO of The Stroke Network and originally posted on their site September 25, 2013. I have Steve's permission to re-post it on our blog. I hope you find it as interesting and inspiring as I do.

Please visit them for many more articles about and by stroke survivors. 
Here is Steve's:

Article written by: Steve Mallory, President & CEO, The Stroke Network,,, Personal Website:

Are you living up to your potential, since your stroke. I know that stroke can be extremely devastating to how you perceive yourself and I thought that if I can change a couple of minds then maybe my story might be worth reading. I have to warn you, what I am going to say has not all been a can of corn!

Let me take a few minutes to give you more about my background so it makes sense why I wound up where I am. I didn’t just fall into this, where I am now, but followed the path of least resistance.

I had my stroke while on a business trip in Toulouse, France. That was in 1994. What a shocker! I was only 36, which is in the age range of most of our survivor members. Ages 30 through 60 are a more predominant age for stroke than I ever thought. I had a reasonable education of an Associates Degree in Engineering and Bachelors in Business. I thought that with my education and background that I would go a longs way with Aerospace! I was highly motivated and was willing to work my tail off!

I had spent my first five years in an aerospace laboratory performing tests and writing technical papers about my mechanical and physical testing. I think that performing this type of work is what makes me so analytical and motivated to take the time to be able figure things out. This was a great job but was not something I wanted to do forever.

I spent the next two years working as a Quality Engineer. This job also required an analytical approach but usually meant that we were the bearer of bad news that our plant had manufactured a part incorrectly. My last seven years were spent as the Chief Quality Engineer in charge of the other Quality Engineers and Inspectors. I had so much responsibility I could hardly keep track of everything. I had to travel all over the world and work with businesses that made parts for my company and then also try to stay on top of what was going on in our plant.

In addition, I was the one who had to give final approval for the fan reversers that we delivered to Pratt and Whitney and then which were assembled to the wings of the Airbus A-330 aircraft. The assembly took place at Airbus in Toulouse, France and that is why I was in that country when I had my stroke.

I was stressed to the max! I could not make a move without somebody asking me about 80 million questions! I was burning out and snapping at people over nothing! I think the 14-hour days caused me to reach my breaking point!

One morning I woke up and the room was spinning out of control. Several more TIA episodes later I had my stroke. I think it lasted three days before the final attack. Naturally, I thought I had just been working too much. The stroke hit me like a thief in the night!

I tried calling my wife from the hospital but just gave a garbled a message. I thought I was speaking clearly but found out later that I made no sense. Little by little, over several hours, my motor controls completely stopped. I was locked-in and had no movement below my nose. Now here’s the scary part, my cognitive functions continued to function at about 95%. Can you imagine not knowing what was going on, not being able to talk or move and your doctors and nurses talking to you in a foreign language?

I can order French meals and knew some of the common French phrases but that’s about it for my knowing the French language! I recognized about 5% of what they were saying and everything else was Greek! They took me to an operating room and put me to sleep. When I woke up I had a tracheotomy! Talk about nightmare! It was every ones worst dream come true! Needless to say my story is probably not much different, in principle, than most of you.

Things could not get much worse and I decided right in the beginning that since I still had my mind that I was not going to give in. Figuring things out was my specialty. What was so discouraging, though, was that I was REALLY paralyzed. I could not fathom how weak I was. I don’t know how you guys feel but my paralysis is a total weakness that is impossible for an able-bodied person to imagine. I had a feeding tube down my nose, a suction tube down my throat and an oxygen tube hooked up to my throat. I did not know how I looked and still did not know that my speech was gone because of the stroke. .

Anyway, I want you to understand that I have had my share of shock and awe! I know that you and your loved ones have gone through equally devastating times. I do not consider myself to have gone through anything more or less than you all have. Just consider that the pain that we all have gone through as enough to make us brothers and sisters.

Do you remember the movie with Richard Dreyfuss and Bill Murray called, “What about Bob?” Murray plays Bob and Dreyfuss is his psychologist. The good doctor goes on vacation and Bob follows him there bugging him for advice about his psychotic life. He is told to think about taking life in baby steps, meaning, take things slow, take your time making decisions only about one thing he can overcome and accomplish it and then move on to the next thing he wants to overcome.

This was my mantra almost from almost day one. I knew I must not focus on improving more than one thing, whatever it was, it had to be achievable and then I had to move to my next goal. Of course, my very first goal was communication! Without it I was toast! This had to be the worst period of my life! Living without communication is a horror story and I lived without it for over a month! I had to make contact with the outside world. My inner dialogue was perfect. I had to let everybody know that my mind was still there and that I could feel everything that was being done to me.

I began communicating by blinking once or twice to yes and no questions. Next, I was blinking to the written alphabet to spell out words. And finally, I was staring at objects I was interested in and looking at a communication board to spell words and sentences. This progress did not happen overnight and took tons of patience. I thought, baby steps, Steve, baby steps!

Next, my most important goal was being able to move and control my head. The human head probably weighs over 10 pounds. If I were sitting up in bed my head would flop over. The nurses would prop pillows on either side of my head. Eventually, one of the pillows would move down and my head would move with it.

One time, I was propped up in bed and left by myself for about an hour. My wife had to go eat dinner and a nurse was supposed to look in on me. Gravity soon started making the pillow move down and so did my head. My neck and head eventually were almost perpendicular to my body. I know I had to look contorted! The nurse obviously had gotten called away and then forgot about me. My wife came back from dinner and found me like that and was furious!

Little by little and day by day my neck was becoming stronger. I had to continuously perform neck exercises. For a long time, my head was bobbly. I started by lifting from left to center and then right to center, forward and backwards, over and over. The computer use was excellent exercise, too! Slowly but surely my head control got better and better. Baby steps, Steve, baby steps!

I guess my point here with telling you about my first goals and accomplishments after my stroke is to let you know that life after stroke is nothing more than a series of baby steps. You cannot give up because you think your life is ruined. I could see that the only way to get whatever I wanted was to use my noggin and then to figure out a way to make it happen.

Setting goals that are too much could make you think that something is not achievable but if you start out slow and bite off a small piece of it, just a nibble, and then be patient and take your time mastering that small piece you can do so much more than you ever thought.

If you go to my web site at you will see that I have been extremely busy over the past 10 years. I was able to accomplish these things by taking it slow, not trying to do too much at once and then making sure that I mastered whatever it was that I had to do. I certainly do not have everything listed but just the ones that I did should show you that I made up my mind not to sit still after my stroke.

You must live up to your potential if you want to feel that your life has been successful. You do not have to feel that having a stroke was the end of your life. It’s true, things will never be the same again but does that mean that living a productive life is finished? Are you ready to end things just because you are out of shape, walk or talk funny?

It’s not the end of the world but making a life for yourself again is something you and your family can brag about! You don’t need your old job back or have to drive again, especially if it’s not safe to do so. What is important is that you are the best person you can be and that you aren’t sitting around feeling sorry for yourself.

Most people know that I am a Christian and although I am not going to evangelize, please bear with me while I quote my favorite scripture.

So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2Cor 4:18

This verse was the key to me being able to accept what I became after my stroke. I had so many things wrong with me that this burden was almost too much to live with. So, I made up my mind to do what I could and to do them well and to just accept what was too much to change. I feel like I’ve lived up to my potential by doing things this way! A friend once told me that life is like a blank canvas. You can draw anything on it that you want.


Sunday, June 1, 2014

Green Lake Wisconsin Stroke Camp

Dan Prueher, UW Health Marketing

Instead of telling you what our camps are all about I decided to include this 6 minute video:

taken at our Green Lake, Wisconsin camp last year. It was produced by Dan Prueher of the Marketing & Public Affairs department, UW Health, Madison, Wisconsin. 

Dan was also a busy volunteer at our Green Lake camp last year and did a great job reprising Johnny Carson's The Tonight Show skit as the question guesser, Carnac the Magnificent. (This video includes a sample of Dan's talent. And, if anyone remembers what the Question was...)

Thank you Dan for producing this video and for helping us at camp. It's people like you and the other UW Health volunteers who make our camps a success and a lot of fun.


Sunday, May 25, 2014

The Privilege of Volunteering

By Monica Vest Wheeler
Stroke Camp Volunteer

I'm a Hoosier girl and I can boast if I want to
In recent years at Retreat & Refresh Stroke Camp (RRSC), I've had the privilege of volunteering alongside physical therapy students studying at the University of Indianapolis, which has one of the best PT programs in the nation.

Between their first and second years, students sign up to attend a camp that gives them an opportunity to be around individuals with challenges in an environment outside the classroom and clinical setting.

RRSC opened its doors a few years ago to the UIndy students, and I've been so impressed with each and every one of them. They've attended Stroke Camps all the way from Living Springs in Central Illinois to Colorado.

These "kids" didn't need my help!
Last year and this year, I was able to attend the university's mid-May service fair in which PT students who volunteered in the previous year share their experiences with prospective volunteers for the coming year. 

It was a privilege to represent RRSC and watch these enthusiastic young adults "sell" Stroke Camp, and these "kids" didn't need my help doing it. to my ears because these students "got it."

One of their instructors asked them what they gained from the experience, and it was music to my ears because these students "got it." 

They talked about getting to know stroke survivors and caregivers as unique human beings in the relaxed Stroke Camp environment. They learned much about the everyday challenges that survivors and caregivers face by observing and interacting, and they found the separate sessions for survivors and caregivers very eye-opening.

A few of our students had the opportunity to attend camps where children of survivors and caregivers were in attendance, and they could witness family dynamics and how families cope with stroke, no matter the limitations or challenges survivors face. One described how a parent could finally spend quality alone time with their child while the survivor enjoyed their own activities at camp. These are the experiences and moments most people take for granted, not understanding how precious they are to stroke families until they face it themselves.

Physical therapy students at the University of Indianapolis who volunteered at Retreat & Refresh Stroke Camp during the 2013 camp season were, from left,
Megan Dennis, Kristina Tyler, Alyssa Zeller, Lisa Boester, Jenna Meyer, Melissa Davidson and Kelsey Wendholt.

Along with their sales pitch for RRSC, these students also "warned" prospective volunteers to sign up ASAP because slots were limited and fill quickly … especially the ones in Colorado … Hmm, I wonder why …


Sunday, May 18, 2014

Strike Out Stroke™ SPRING Is Here.

But first, a word from our director:

Director’s Corner
Tenth Anniversary of Stroke Camp

When John was reading the last newsletter he said “Why is my name never in here?” When I clarified, what he really meant was that I am always writing the articles, not him. So, I took that as an opportunity for him to “write” an article. Since John has aphasia and can no longer spell or hardly read at all, he dictated the “gist” of what he wants to say and trusts me to convey the message, so here goes.

“Almost 13 years ago, I had my stroke. It was a bad time for me, but also for Marylee and Granny (Marylee’s mother). I couldn’t talk at all and was almost like a baby. Now since we do the camps, I have a chance to talk better, see people all over the U.S. and we all help each other. I have more friends and people to love than ever and don’t know what we would have done these 10 years without all these camps. I love seeing everybody and the special people who volunteer and help us so we can do the camps. 

Marylee’s family has helped us for all 10 years. I am one of the lucky ones.” 

So there you have it, (almost) in John’s own words what this 10th anniversary year of Stroke Camp means to him. 

Marylee Nunley, 
Executive Director

And now a word from our online store:

Now introducing the 2014 line of Stroke Camp and Strike Out Stroke™ merchandise! Strike Out Stroke™ shirts are $15 for M-XL $17 for 2XL and (bulk pricing available-call for more information) and hats are $20 each. The Stroke Camp merchandise this year is a zip-up hoodie in your choice of either white or light steel. Hoodies are $40 for S-XL and $45 for 2XL and 3XL. We will be bringing the zip-up hoodies to each of the camps to sell; however, order now if you want to guarantee your size and color. 
Order yours today at

Strike Out Stroke™

SPRING is here. When we think of spring, we also think of America’s favorite pastime, baseball. Whether it is watching a major league event or seeing grandchildren play tee ball for the first time, almost everyone enjoys participating in or watching baseball. In fact, more people attend major league baseball games than the other 4 major sports (football, basketball, soccer and hockey) combined. In 2013, over 70 million people attended major league baseball games.

Almost every community has some form of baseball, which creates a unique opportunity to educate millions of people about the signs of stroke and the immediate need to call 911. In 2010, Retreat & Refresh Stroke Camp trademarked the term Strike Out Stroke™ and began building a National Stroke Awareness Campaign through professional baseball. In 3 short years, this campaign has grown from a few major and minor league events to over 20 major league and 50 minor league events in 2014.

Last year over one million people heard the FAST message about stroke. This year we are expecting over two million people will hear the FAST message. With over 800,000 people experiencing a stroke each year, it is imperative that all of us take the responsibility to educate others about the signs of stroke and the immediate need to call 911. Strike Out Stroke™ is a unique avenue to educate communities around the country about stroke. Common elements that are included in Strike Out Stroke™ events are: pregame ceremonies, first pitch by a stroke survivor, messaging on digital boards, information distribution, broadcast interviews, and tv/radio promotional spots. The single message that is brought to each community is FAST.

Use FAST to remember the signs of stroke:

      (F)ace: Ask the person to smile. Does one side of the face 

      (A)rms: Ask the person to raise both arms. Does one arm drift

      (S)peech: Ask the person to repeat a simple phrase. Is their
                      speech slurred or strange?

      (T)ime: If you observe any of these signs, Call 911 immediately!

Peoria, IL Area News

Fifth Grade Education
and Strike Out Stroke™

In the past two months, Retreat & Refresh Stroke Camp has
educated over 700 fifth grade students and teachers in the greater Peoria, IL area. With the help of the stroke coordinators from the Illinois Neurological Institute Comprehensive Stroke Center and numerous stroke survivors and caregivers, the stroke awareness and FAST message was presented to 30 classes in 11 schools. During the classes, students are taught about what a stroke is; how to recognize a stroke (Give Me 5 and FAST); ways to prevent a stroke by eating healthy, exercising, and not smoking/doing drugs. 

The stroke survivors and caregivers in attendance tell their post-stroke experience and the students are given an opportunity to ask questions. The students also participate in a disability simulation where they are given an opportunity to complete a task such as putting on and tying a shoe or putting on a belt using only one hand. Students are encouraged to participate in the stroke poster contest where the winner gets to fly in the OSF LifeFlight helicopter and land in centerfield at the Peoria Chiefs game on June 1

Peoria Chiefs, Peoria, IL 
and Strike Out Stroke™

Our 6th annual Strike Out Stroke™ game with the Peoria Chiefs will be Sunday, June 1. Gates open at 5 pm and the first pitch is at 6 pm. At this event you can expect to see:

• Winning fifth grade stroke posters on display,
• Fifth grade poster contest winner landing in centerfield in the OSF
  LifeFlight helicopter and throwing out the first pitch,
• Dream Team of stroke survivors on field before the game,
• Stroke awareness and education throughout the game,
• EMT and AMS personnel on hand with ambulance,
• Stroke survivors and caregivers honored throughout the evening,
• Promotion of FAST message to all in attendance,
• Fireworks at the end of the game.

Complimentary tickets are available for stroke survivors and caregivers. Additional tickets (for family members and friends) are $11 for adults and $5 for kids 12 and under. The $5 kids ticket includes a voucher for free food.

It is imperative that you call or email by Monday, May 26 with the number of adult and youth tickets needed (this includes survivors and caregivers wanting complimentary tickets). Don’t wait-reserve your tickets now. 309-688-5450 or email

Major League Baseball Games

Promoting Strike Out Stroke™ 
2014 Schedule

                                May   4 Atlanta Braves
                                May   6 Pittsburgh Pirates
                                May   8 Texas Rangers
                                May 10 San Diego Padres
                                May 15 Minnesota Twins
                                May 17 New York Yankees
                                May 17 Colorado Rockies
                                May 24 Cincinnati Reds
                                May 30 Arizona Diamondbacks
                                May 31 Seattle Mariners

                                June   1 Chicago White Sox
                                June 14 Houston Astros

                                July   5 Anaheim Angels
                                July 13 Baltimore Orioles

                               August 14 Boston Red Sox
                               August 17 Washington Nationals
                               August 24 LA Dodgers
                               August 31 St. Louis Cardinals

                               September 4 Milwaukee Brewers

In addition to major league baseball, there are numerous Strike Out Stroke™ events across the country in minor league communities. For more information, explore and be sure to “like” Strike Out Stroke™ on Facebook. For questions and interests in sponsoring a Strike Out Stroke™ event in your community, contact Larry Schaer, Associate Director at 1-866-688-5450 or Through working together, we can Strike Out Stroke! 

Cardinal/Cub Tickets For Sale 

We are also selling tickets for the Cardinal/Cub game in St. Louis, August 31 Ticket sales will benefit our Retreat & Refresh Stroke Camps throughout the nation. Cardinal/Cub tickets for Aug 31st game in St. Louis are $30 and helps our great organization Retreat & Refresh stroke camp. One of our members in the Peoria area has the tickets on hand. Call the office at 309-688-5450 and ask for Lauren-she will help get your tickets to you. Don't wait-call today!! Hope to see you at the game!
Strike Out Stroke™ is a division and registered trademark of Retreat & Refresh Stroke Camp.

In Other News

2015 Cruise!
Retreat & Refresh Stroke Camp is in the final 
planning stages of its second cruise! The locations 
selected are Cozumel, Mexico and Nassau, 
Bahamas in the Western Caribbean. The ship 
will be docking at both. Mark your calendar for 
February 21-26, 2015 if you plan to join us. 

A full page flyer is posted on our website and will be in the next issue of our newsletter. We have reserved handicapped rooms as well as inside, outside, and balcony rooms. Prices start under $500 per person double occupancy. 

A deposit of $100 per person will hold your room. Our travel agent, Johanna McCarty, who understands stroke very well, will help you coordinate your entire trip or just the cruise segment. She will do as much or as little as you request. We are very excited to be offering this opportunity to cruise once again. More information is available upon request, just give Johanna a call.

Johanna McCarty, Arrow Travel, 
(217) 532-2847