Monday, May 25, 2015

Chime Strokers play Springfield!

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Volunteer Staff 

Our Chime Strokers choir can make your heart and soul sing … any time anywhere.  I may have memorized most of their tunes, but I hear and learn something new every time I see them in action.

This unique "collection" of stroke survivors and caregivers bring magic to tone chimes and everyone in their audience. The simplicity, yet challenge, of the chimes give our survivors a brain workout beyond compare. I've witnessed so many amazing miracles at all of the Retreat & Refresh Stroke Camps where the chimes have been brought into play. Yes, pun intended :-)

Our Chime Strokers, created nearly five years ago to promote a little education and a LOT of fun and friendship, went to Springfield recently to represent Stroke Camp when State Senator Dave Koehler bestowed an official proclamation recognizing Stroke Camp's contribution to the quality of life for stroke survivors and caregivers across the state and now the country. Our executive director Marylee Nunley was bursting with pride as always.

Our performers go way beyond the call of duty to give their time and energy to rehearsals and performances year-round. They are individuals whose lives have been deeply and profoundly affected by stroke: caregiver Monica Mugavero, caregiver Tony Ozella and survivor Pat Ozella, caregiver Ruthanne Scott and survivor Bob Scott, caregiver Carol Lee, and survivors Randy Randall, John Nunley, Dawn Robinson, Mert Berlett, Bill Hart, and Sue Johnson.

And none of this would be possible without the unwavering dedication, talent and pure love of co-directors and music therapists Susan Bock and Lauren Kramer. What they give of themselves can't be described in words.

Keep on eye on our Chime Strokers! You never know where they're going to perform next!

State Senator Dave Koehler & Stroke Camp Executive Director Marylee Nunley

Senator Koehler and survivor Mert Berlett

Senator Koehler and survivor Randy Randall

Senator Koehler and survivor John Nunley

Senator Koehler and caregiver Tony Ozella, and survivors Pat Ozella, Randy Randall and Sue Johnson

Senator Koehler and caregivers Monica Mugavero and Carol Lee, and survivor Dawn Robinson

Senator Koehler and Chime Stokers' co-director Susan Bock

Chime Strokers co-director Lauren Kramer

Monday, May 18, 2015

Always a winner

Always a winner with Strike Out Stroke™

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Volunteer Staff

Rain may have chased away some people, but when it's Strike Out Stroke™ night in Peoria, IL, hometown to Retreat & Refresh Stroke Camp™, nothing keeps away our devoted stroke survivors, caregivers and volunteers who are determined to Strike Out Stroke™ in more ways than one.

The start of the game was delayed two hours by pesky rain clouds as I waited to take photos of our "Dream Team" of survivors take the field. The arrival of our fifth grade poster winner, Jonah Boston, in the Lifeflight helicopter was cancelled for safety reasons. So he had to enter the gates like the rest of us, but he did have that lucky pass to the mound to throw out the first pitch.

Our Chime Strokers were also supposed to be on the field to perform the national anthem, but instead had to settle for a dry spot under the awning along the first base line. Safety again was the primary concern as trying to maneuver wheelchairs and walkers would have been a worry in the wet and muddy grass on the field. However, they stirred our hearts and patriotism under the incredible voice of Monica Mugavero and directors Susan Bock and Lauren Kramer. I certainly had goosebumps from my vantage point on the field, and it wasn't from the cool evening breeze!

What will stay with me from that evening will be the images of love and friendship and laughter that our local survivors and caregivers share. Smiles were evident everywhere … because dreams, like the creation of Strike Out Stroke™ can come true … not only for a fun time at the ballgame but for the far-reaching impact of teaching the public the warning signs of stroke. 

And when I see a stroke survivor put their hand over their heart for the national anthem, how can I not love and applaud and embrace them even more? Yes, Retreat & Refresh Stroke Camp is the ultimate team of winners when partnered with Strike Out Stroke …

May good weather and open hearts greet everyone for what will be an amazing season of Strike Out Stroke™ all over this wonderful country! Stay tuned!

Sunday, May 10, 2015

Cooking With Children

Before I begin this week's article:

This week I am presenting the video of the Strike Out Stroke event at the LA Angels game in Anaheim, California:  Click Here
Many of you have small children, or grandchildren, perhaps. Have you ever wondered what you could do to bond with them or teach them new skills, and do something healthy with and for them at the same time? Well this article will propose a way to do that while keeping in mind one of the major factors that will contribute to stroke prevention - eating healthy food. 

The following is adapted from the U.S. Department of Agriculture, "Tips For Using the Food Guide Pyramid for Young Children 4 to 6 Years Old", 1999.    

Get Them Interested
Cooking with your children is a good way to help them develop healthy eating habits. Most children enjoy helping in the kitchen. While they help you prepare a meal, you can talk to them about healthy foods. Children like to eat the food they make. This is also a good way to get them to try new healthy foods.

You can show your children how to help you prepare meals. You know your child's skill level. Compare it to the recommendations below and see if they match. If not maybe you can help raise them with some hands on experience from an expert chef (that's you). 

Here are ways that children of different ages can help in the kitchen:

2- year-olds can: 
• Wipe tabletops.
• Scrub and rinse fruits and vegetables.
• Tear lettuce or greens.
• Break cauliflower.
• Bring ingredients from one place to another.

3- year-olds can: 
• Wrap potatoes in foil for baking.
• Knead and shape dough.
• Mix ingredients.
• Pour liquids.
• Shake liquids in a covered container.
• Apply soft spreads.
• Put things in the trash.

4- year-olds can: 
• Peel oranges or hard-boiled eggs.
• Mash bananas or cooked beans with a fork.
• Cut parsley and green onions with kid-safe scissors.
• Set the table.

5- to 6-year-olds can: 
• Measure ingredients.
• Use an egg beater.

Be sure to have children wash their hands before and after helping in the kitchen. 

Be patient with spills and mistakes. Remember that the goal is to help your children learn about healthy eating.


Set out three or four healthy foods, and let your children make a new snack or sandwich from them. Use foods your children can eat without choking.

Start with: 
• A new kind of bread (whole grain or rye) 
• Whole grain crackers or graham crackers 
• Mini rice cakes or popcorn cakes 
• Small bagels 
• Small pieces of pita bread 

Spreads could include: 
• Low-fat cream cheese or cheese spread 
• Low-fat peanut butter 
• Bean dip 
• Jelly or jam with no sugar added 

Toppings could include: 
• Slices of apple or banana 
• Raisins or other dried fruit 
• Strawberries 
• Slices of cucumber or squash 
• Cherry tomatoes cut in small pieces 
• Slices of cheese or hard-boiled egg 

And here's a very important part of this exercise: As you help your children make the new snack or sandwich, talk about why it is healthy. Point out the different food groups that are included in the snack or sandwich. Explain that eating a variety of foods is healthy. Ask why the snack or sandwich tastes good. Is it sweet, juicy , chewy, or crunchy?

I think you can have a lot of fun doing this with your children and your children will have a lot of fun, too. Think of the memories you will be building. 

Sunday, May 3, 2015

Tools and Tricks for the Stroke Survivor

The following article was written and published on the StrokeNet Newsletter web site by David Wasielewski.

David is a stroke survivor and member of the StrokeNet staff. You may visit the StrokeNet web site by clicking on this link: 

Retreat & Refresh Stroke Camp is not affiliated with StrokeNet, but they have many interesting and useful articles that I like to share with our readers, with permission from the StrokeNet staff, of course. 

by David Wasielewski

Tools and Tricks for the Stroke Survivor

Regular readers of my column might notice that the articles are normally focused on the larger social and psychological adjustment after stroke. I was recently reminded that there are many small day to day struggles to be overcome as well in order to make our lives livable. The challenge of being one handed (I am hemiplegic) forces many small adjustments, tricks and a search for tools that address them. I’ll try to share some of my discoveries here. Caregivers should pay particular attention as they will need to bring these tools into the house or consider these new rules when buying clothes and supplies for their survivor or furnishing the house.

RRSC editor note: hemiplegic means the complete parylisis of one side of the body. Not all survivors suffer from something this severe but many do.

Dressing, clothes and closets: Velcro is an essential for the one handed. Velcro strap shoes make getting dressed much easier. I understand that there are tricks for one handed shoe tying which I have never mastered, but Velcro is quick and easy. New Balance and Propet offer comfortable walking shoes that are easy to manage, durable and good looking for all occasions and seasons.

Buttons are preferable to zippers on all garments when shopping for easy to manage clothes (attention caregivers!!). I have found that ½ zip pullovers are fine but full zip clothes are a challenge. For those in doubt, try to zip up a winter coat with one hand. Winter might be over before you accomplish this task. Speaking of winter clothes, oversized mittens are preferable to gloves. It is nearly impossible to manage gloves with a spastic hand. Belts are often difficult to manage with one hand. A bathrobe with a button or a Velcro closure can make showers and dressing and showering easier to manage.

Closets: Hangars are almost impossible to manage with one hand. Try it and see. For frequently used items a series of coat hooks on the wall in the closet are essential and in most cases easy to install. For easy coat access, consider a hall coat tree.

Showers, baths: Many hemiplegics can manage dressing independently if a chair or bench is provided for that purpose. A small bench or chair in the bathroom or just outside the bathroom provides support for the survivor to be able to dress and undress on their own. A walk in shower with proper grab bars is essential for hemiplegic folks. Make sure a professional installs the bars to ensure proper safety.

Pump bottles for soap, shampoo, toothpaste etc. make one- handed bathroom tasks much easier. Towel hooks on the wall are much easier to manage with one hand than towel bars. Let your survivor choose the most comfortable positons for the bars, benches and hooks. Each survivor will have particular preferences depending on their affected side and strengths. It also gives them an opportunity to participate in and plan their own environment. Working on a project like this can be empowering and a confidence builder for the survivor.

Stairs and walkways: It is often possible for hemiplegic survivors to navigate stairs. The limiting factor here is that strong railings need to be present on BOTH sides of the staircase. Make sure the railings are properly installed to support the survivor. A Stairmaster might also be a consideration if stair-climbing is not possible. Look at any access walks to your house. Sloped walkways and outdoor stairs may need railings as well. Any sloped walkway, even if smooth, will present a particular challenge to a survivor with hemiplegia.

Scissors: A good pair of scissors is an essential tool for the one handed. Scissors allow the survivor to manage opening mail, accessing boxed foods like cereal and a myriad of other tasks. Mine are always on hand for help in the house

Kitchen: Eating can be a particularly challenging and frustrating experience for the one – handed. The ability to use a knife and fork is often lost. Cutting meats and other foods becomes impossible. 
rocker knife is essential for this challenge.

Opening cans and jars is new challenge with one hand. 
The ‘spill not’ jar opener is an invaluable device for navigating the kitchen one handed.

Google kitchen disability aids for a variety of other devices to help with eating and cooking.

I have found that folks with these challenges are often on the lookout for devices that can make life easier. On a recent visit to a friend’s house we discovered a battery powered wine bottle opener that I could operate. Not an essential tool but one that allows me to be a proper host when the occasion arises. 
Google “Rabbit wine opener”:

Discovering these new tools can be an important project for the caregiver and survivor to work on together. Caregivers should involve the survivor in the process as much as possible as it helps empower the survivor to take an active role in structuring their new lives. It gives both parties some sense of control over their new and challenging circumstances. Finding and sharing these unique solutions can be an interesting exercise at support groups.

RRSC editor note: the above links in blue are links that may not exist when the item sells out. We do not benefit from the sales of any of these items. However, if you do want to purchase them (or anything on Amazon, for that matter), use and name us as the charity and Amazon will donate a percentage of the sale to us. This does not increase the item price to you, but does benefit us through Amazon's generosity.
Thank you David and StrokeNet for allowing me to share your articles with our readers.

Sunday, April 26, 2015

Quilt Project

One of the greatest treasures of each Stroke Camp are the stories that are created. At the last Kansas City Stroke Camp, the story consisted of volunteers, stroke survivors, caregivers, and RRSC staff working on a specific project that resulted in a beautiful quilt.

Not only did the quilt reflect the collaborative efforts of everyone, but also expressed the love that all the camp participants shared in making this special gift. Each attendee signed their name to a leaf, which was stitched onto the tree.

This quilt project was the vision of Connie Johnson, who spent countless hours designing and sewing this amazing work of art. 

Thank you to Connie and all KC Stroke Camp participants for making this special gift that will hang on our office wall for years to come.

The scripture at the bottom of the quilt (which doesn't show up in the photo) reads: If a tree is cut down, it will sprout again, and its new shoots will not fail. Job 14:7.

Sunday, April 19, 2015

Strike Out Stroke(tm) 2015 Report

The following is reproduced from Jerry Shelsta's report to the RRSC Board of Directors. Jerry is our Director of Strike Out Stroke, a subsidiary of Retreat & Refresh Stroke Camp. As a refresher, since Arizona was the first SOS game this year, I thought I'd repeat their video from last year. Click here -->Arizona Diamondbacks 

Report to the Retreat & Refresh
Board of Directors

by Jerry Shelsta

The Mission of Strike Out Stroke is to educate the public about the symptoms of stroke and need for immediate medical treatment. This campaign promotes “FAST” (Face, Arms, Speech, Time), which is the nationally-accepted symptom awareness program for national stroke organizations, emergency medical providers and stroke centers. In the 2014 Strike Out Stroke Awareness Campaign, over 700 volunteers supported nineteen Major League Baseball Events which had a live audience of 622,000 fans. Including 50+ Minor League Baseball Events and fans and broadcast media (TV and radio), over 1.5 Million people were exposed to the FAST lifesaving message.

Strike Out Stroke™ is a national event-based campaign that designates one game in each selected market as “Strike Out Stroke Day.” Strike Out Stroke Management (SOSM) oversees all Events working with each market’s Local Organizing Committees (LOC) to provide direction, support, materials and media packages for the setup, promotion and execution of the Event. The LOC is made up of regional Comprehensive and Primary stroke centers, hospitals, first responders, rehabilitation centers, stroke survivors/caregivers and other stroke advocates.

SOSM makes all contractual arrangements with the Baseball Club including date selection; associated promotional and recognition rights; pre-game field activities and in-game broadcast recognition and digital signage.

In 2015 SOS is planning 22-26 Strike Out Stroke Events with Major League Baseball and developing local organizing committees in each of these markets across the United States. This type of national organizing entails extensive travel and experienced staff to manage and coordinate multiple events simultaneously. Additionally, the SOS Baseball Event is leveraged in each market to generate pre-event regional media attention to increase stroke symptom awareness messaging impressions.

Recognizing the work required executing the scope of work defined above; following are the key components of setting up each SOS City:

· Scheduling event dates and negotiations with Professional               Baseball Clubs
· Launching and training LOC’s in each market
· Event Management and Administration
· Travel
· Digital signage, and Public Relations Materials
· Social Media creation and support

Many of the dates and cities are confirmed for 2015. Following is a list of what is planned and what has been confirmed as of 14-April:
1 Anaheim 25-Jul 
2 Arizona 3-Apr
3 Atlanta 12-Sep
4 Baltimore 14-Aug
5 Boston TBD
6 Chicago White Sox 7-Jun
7 Cincinnati 13-May
8 Cleveland?? TBD
9 Colorado 23-May
10 Dallas 13-May
11 Detroit?? TBD
12 Houston 1-Aug
13 LA 12-July
14 Miami 23-May
15 Milwaukee 30-Jul
16 Minnesota 7-May
17 NY Yankees 9-May 
18 Oakland 29-May
19 Philadelphia TBD
20 Pittsburg 20-May
21 San Diego 25-Apr
22 San Francisco 15-Aug
23 Seattle 29-May
24 St Louis 28-Jun
25 Tampa Bay 30-Aug
26 Washington 19-July

How easy is it to save a life? How much easier is it to save thousands of lives? Every year 800,000 people suffer a stroke in the United States yet the general public does not recognize stroke symptoms. Strike Out Stroke was created to address this severe deficit in public awareness. Because of the ongoing support of the Retreat & Refresh Stroke Camp Board, millions of Americans will learn the simple but powerful, lifesaving message about the symptoms of stroke and how acting FAST to call 911 saves lives.

Sunday, April 12, 2015

Survivor Spotlight: Christine Webster

I always knew that something life changing was going to happen to me at age 40. I just felt it. On January 1, 2008, I had a massive stroke caused by an Arterial Venous Malformation in my brainstem.

I was 40 years old, a free spirit, independent. I had just received my graduate degree and became a teacher . My passion was to educate children and inspire hope for our future. After a year of teaching, I started to have horrible headaches. Within 6 months I suffered the stroke. For years afterward, I had multiple brain surgeries . It was a long journey home.

My stroke recovery has been about incredible challenges, but it has also been about hope. I tell myself "slow and steady wins the race", "this too shall pass" and inspirational things that keep me
going. A work in progress is what I consider myself now. I don't focus on the past or the future anymore. I focus on the present. I think it's all in how we want to look at our stroke. Is the glass half empty or half full? I choose half full. It takes hard work every day to maintain a positive attitude. It is a meditation for me.

I now accept what has happened and appreciate the new me. I don't believe stroke is easy for any one- of any age. Afte (years of recovery, I started volunteering in my community. I volunteer with stroke patients in the hospital, help tourists at the local chamber of commerce and tutor schoolchildren . I am very active in stroke support groups and public speaking events.

Life was extremely difficult after my stroke, but I adjusted. I live in a great community and have many new friends. I couldn't do it without them. Since my stroke, I have learned to ride a three-wheel bike, make lampshades and take one day at a time. I start each day with a healthy dose of gratitude, laughter, kindness and compassion . It is my intention to make each day my best. I believe that anything is possible and I believe in miracles.

In early January, I started searching online and found Stroke Camp. It sounded so interesting. I flew down to San Diego for the camp held January 23-25 because I just had to meet these incredible people that make it all happen. I want to continue my work with stroke recovery, prevention and education.

I just simply want to help people. My dream is to see Stroke Camp come to Northern California someday. I believe "where there is a will there is a way." I can't give up until stroke statistics decline, until people stop dying and being disabled. I believe I can help to produce that change. At least I can try.

So something big did happen to me when I turned 40. It was life changing and I will never ever be the same. For that I am grateful. I appreciate everything I have been given and have survived. After seven years of recovery, I just got my first job . I am beside myself with excitement for the future. Never give up hope and never stop trying. We all have something great to give.


Sunday, April 5, 2015


He is risen indeed!!!