Sunday, June 28, 2015

RRSC Open House Was Amazing

June 14th we had an open house from 12:30 to 3:30 at our new headquarters in Peoria, Illinois. 

At least a hundred visitors passed through our facilities throughout the day and enjoyed the free BBQ pork sandwiches, hot dogs and drinks.

Here is a brief tour of what our visitors were here to see. I'll start with the offices of our Executive Director, Associate Director, Camp Coordinator and Administrative Assistant.

As you enter the front door you will be greeted by our Camp Coordinator, Lauren, who is not at her desk right now because she's helping our visitors, our chimes choir and with the many fun things we presented. Lauren organizes our sponsors, camp locations, volunteers, equipment, travel, schedules, pretty much everything that makes our camps run so smoothly.

A little further in is the office of our associate director, Larry, who is not at his desk either because he is out in the parking lot greeting incoming visitors. Larry finds sponsors for our camps, scouts for suitable, handicap accessible camp locations, and also is the nation-wide manager of our Strike Out Stroke division. Strike Out Stroke is a nation-wide organization providing stroke awareness and education through major league baseball teams.

At the back of the building is Marylee's office. Marylee is our Executive Director. She does everything else plus make sure the rest of us do everything else as well. Without her and her husband John there would not be a camp.

We have a new member of our staff, Martha, who is taking care of our multitude of administrative tasks plus office maintenance, and her office is between Larry's and Lauren's. For some reason I don't have a picture of her desk. Her office looks similar to the others and is even a little bigger. She's not at her desk either because she's helping with paraffin dips, which I'll explain later.

One of the entertaining events at the open house was our chimes choir.

The choir members are stroke survivors, primarily, and their caregivers, and is led by Susan, one of our Music Therapists, and Lauren, who is also a Music Therapist in addition to being our camp coordinator. Each member has a chime instrument that produces a unique and beautiful tone. With Susan's and Lauren's direction and Monica the soloist and a caregiver herself, they create a symphony that can bring tears to your eyes. That's Monica standing behind the choir.

Another fun thing to do was a game of Bags played similar to horseshoes. The idea is to get the bag in the hole or be the closest team bag on the board.  

Remember me mentioning paraffin dip? Here's how it's done.

This is one of the things we do during the manicuring sessions at camp. You dip your hands in the warm melted paraffin...

...put your hand inside the soft cotton glove, and let the magic soak in. This is very popular at the camps.

Here is our meeting/recreation/chimes choir practice room. During the open house, Sarah, Marylee's sister, led some of the attendees in a drum circle. Another popular and frequent event at our camps.

We also had our educational learning center set up to promote stroke education and awareness. 

The highlight of the open house was when Marylee's brother, Rodney, presented a check for ten thousand dollars to the camp in memory of his late wife, Meme. Rodney and Meme have been terrific supporters and active in camp events for many years. 

Through his generosity many stroke survivors who could not otherwise be able to afford to attend camp will now be able to.

Thank you Rodney! We and many less fortunate stroke survivors are blessed to have you and your support.

I would also like to give a thank you to all the volunteers who helped make our open house special, and a special thanks to one of our voluteers, Tony Ozella, and the Knights of Columbus of Washington, Illinois for the use of their tent and BBQ grills, and a thanks to Earl and Carol Lee for the use of their tents. 

We've come a long way since our first camp in 2004. Where are we now? Maybe this will help you appreciare our growth. Each circle represents either a camp location (yellow) or a major league baseball game where we've done a Strike Out Stroke event (white).
And we are still growing.


Sunday, June 21, 2015

Tone, Tightness, & Spasticity

The following article is reproduced from the Stroke Wise web site ( with Dave Valiulis' permission. I encourage you to visit his site as he has a lot of excellent articles related to strokes. You may click on any highlighted words below to be taken to a website for more information. When you exit that website you will be returned to this one automatically.

Tone, Tightness, & Spasticity

Spasticity is tight, stiff muscles that make movement difficult or even impossible. Also called tone or tightness, spasticity can cause pain, abnormal posture, and uncontrollable movements.

Spasticity can occur anywhere in the body, but it is most common in the arm typically with a closed fist, bent wrist, and flexed elbow. Needless to say, this can make common activities like dressing and eating very difficult.

In legs, spasticity causes a stiff knee and a pointed foot. It can also cause involuntary movements, which may include spasms and clonus (a series of fast involuntary contractions). Orthotics, such as ankle-foot braces (AFOs), are sometimes used to limit spasticity in legs.

Nearly one out of every three patients may have spasticity after a stroke, and approximately 40% of them still have spasticity at 12 months post-stroke. In a survey done by the National Stroke Association, while 58% of survivors in the survey experienced spasticity, only 51% of those had received treatment for the condition.

The cause of spasticity is not totally understood, but basically it entails damage to the part of the brain that controls voluntary movement.

Without daily physical rehab, the muscles will remain contracted and joints become immobile. For best results during stroke rehab, therapy such as stretching and strengthening exercises work best and are typically the first line of treatment.

What you can do about the symptoms:

Strategies include moving of the affected limb early in rehabilitation and sustainedstretching.

Splinting and ice packs are other strategies that can be used to temporarily decrease the extent of spasticity.

Oral medications for spasticity include medications such as Valium or Baclofen, which relaxes muscles by acting on the central nervous system. They can decrease muscle spasms, tightness, and pain and improve range of motion. The problem with oral medications is their side-effects like sleepiness.

Baclofen can also be given as an injection within the space surrounding the spinal cord (this is called intrathecal injections). However, this this requires surgical implantation of a pump that delivers the drug to the spinal cord.

Injections are administered directly into the spastic muscle by blocking chemicals that make muscles tight. Commonly used is the botulinum toxin (Botox) or Phenol. These injections usually improve muscle stiffness within two to four weeks.

In severe cases, surgery is an option. This includes includes lengthening or releasing of muscle and tendons and cutting selective sensory nerve roots.

But "the Holy Grail for spasticity reduction is a melding of doctor-prescribed medical interventions and therapist-delivered neuroplastic treatment options," as Peter Levine says in his book "Stronger After Stroke".


Sunday, June 14, 2015

Post-Stroke Seizures

The following article is reproduced from the Stroke Wise web site ( with Dave Valiulis' permission. I encourage you to visit his site as he has a lot of excellent articles related to strokes. You may click on any highlighted words below to be taken to a website for more information. When you exit that website you will be returned to this one automatically.


Post-Stroke Seizures

Seizures are caused by sudden disorganized electrical activity in the brain and be can be characterized by spasms or convulsions. About 10% of stroke survivors experience seizures.

In the first few weeks following a stroke some stroke survivors will experience a seizure. As a general rule, seizures that first occur immediately shortly after a stroke are unlikely to became a permanent, recurrent disorder. On the other hand, seizures that first occur weeks or months after a stroke can be a recurring problem and require medication. Seizures like this are also know as stroke-related epilepsy.

Some physicians will prescribe a temporary anti-seizure medication as a preventative measure immediately after a stroke even if no seizure has occurred. This is most often done in the case of hemorrhagic strokes, which are more prone to seizures rather than ischemic strokes.

Stroke-related epilepsy can typically be fully controlled with anti-seizure medicines.
More than 20 different anti-seizure medications are available today, all with different benefits and side effects. Taking medications regularly as prescribed is very important in post-stroke seizure management.

The latest studies of post-stroke seizure treatment show that newer drugs, such as lamotrigine, gabapentin, and levetiracetam, in low doses are often prescribed because of their high rate of long-term seizure-free periods, improved safety profile, and fewer interactions with other drugs, especially anticoagulant ones.

Work with your doctor to find the best medicines for you.

What to do if you see someone having a seizure
The National Institutes of Health has established guidelines for what to do if someone is having a seizure:
  • Roll the person on his or her side to prevent choking on any fluids or vomit.
  • Cushion the person's head.
  • Loosen any tight clothing around the neck.
  • Don't restrict the person from moving or wandering unless he or she is in danger.
  • Do NOT put anything into the person's mouth, not even medicine or liquid. These can cause choking or damage to the person's jaw, tongue, or teeth. Remember, people cannot swallow their tongues during a seizure or any other time.
  • Remove any dangerous objects the person might hit or walk into during the seizure.
  • Note how long the seizure lasts and what symptoms occurred so you can tell a doctor or emergency personnel if necessary.
  • Stay with the person until the seizure ends.Call 911 if:
  • The person is pregnant or has diabetes.
  • The seizure happened in water.
  • The seizure lasts longer than 5 minutes.
  • The person does not begin breathing normally or does not regain consciousness after the seizure stops.
  • Another seizure starts before the person regains consciousness.
  • The person injures himself or herself during the seizure.
  • This is a first seizure or you think it might be. If in doubt, check to see if the person has a medical identification card or jewelry stating that they have epilepsy or a seizure disorder.
After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Try to help the person find a place to rest. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely.
For more info:

Sunday, May 31, 2015

Tips and Info for Caregivers

The following article is reproduced from the Stroke Wise web site ( with Dave Valiulis' permission. I encourage you to visit his site as he has a lot of excellent articles related to strokes. You may click on any highlighted words below to be taken to a website for more information. When you exit that website you will be returned to this one automatically.

Caregivers for stoke survivors

Tips and info for stroke caregivers

There are over 2.2 million stoke caregivers in the U.S.

General tips for caregivers:
  • Help the individual become involved outside the home and in leisure activities. 
  • Encourage as much independence as possible. 
  • Let the survivor make the decisions.
Be mindful of you too.
The rewards of caregiving include an improved appreciation of life, feeling needed or appreciated, and the development of a more positive outlook. But caregiving can also be a tremendous burden. It can result in psychological distress, decreased social contact and activity, depression, stress, and an overall decrease in quality of life. If you see any of these things happening to you, try these tips:
Seek out caregiver support groups.
Do not try to do caregiving 24 hours a day. Take a break.
Be sure to take care of you. Eat, take your medications, exercise, rest, go shopping, have some fun.
Ask for help from family, friends, or community organizations.
Remember, you are a caregiver, not a slave.
Try to keep a positive attitude. This is an important coping strategy.

Tips for dealing with people with aphasia: 
  • Maintain a natural conversational manner appropriate for an adult. If needed, you can simplify your speech by using short, uncomplicated sentences; but don't talk "down" to them. Do not use "baby talk." 
  • Don't raise your voice; they are not hard of hearing. 
  • Minimize distractions and background noise, such as a blaring radio, whenever possible. 
  • Be patient. Repeat the content words or write them down as needed. 
  • Include the person in conversations and encourage any type of communication, whether it is speech, gesture, pointing, or drawing. 
  • Avoid correcting the individual's speech, unless they ask for help. 
  • Do not finish the person's sentence or train of thought for them, unless asked. 
  • Allow the person plenty of time to talk. 
  • Don't pretend you understood what was said if you did not. 
  • A good video of "aphasia etiquette" comes from the Stroke Association of Great Britain. 
Click to watch video - Ten Guidelines for Interacting with a Stroke Survivor

Publications, handbooks, and newsletters:
Stroke-related associations and websites:
  • Careliving Community is a social network designed exclusively for caregivers and family members of stroke survivors.
  • See the Internet Stroke Center page for general info for caregivers.
  • An excellent page comes from the American Stroke Association.
  • See the Stroke Family Caregiving for African-Americans, which contains useful information for all caregivers.
  • CaringBridge provides free websites to caregivers to easily post updates and progress for the loved one. This reduces the time and emotional energy spent on repeated phone calls and emails and keeps everyone informed with the same, accurate information.
  • The list of Caregiver Rights might help you re-focus some time and energy on caring for yourself and let you know that it's not unusual to feel under-appreciated, frustrated, left out and even angry.
General and local caregiving sites:

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!