Sunday, October 26, 2014

September/October Camp Newsletter

Retreat & Refresh Stroke Camp
September/October 2014 Newsletter 

The mission of Retreat & Refresh Stroke Camp is to improve the quality of life for stroke survivors, caregivers, and families. This is accomplished through weekend retreats, as well as community stroke education and awareness events for the public.

From the Director's Corner 
Well, we have moved into our new office! Photos will be available in the newsletter link when it is added to our website   Click on the Media/News button and look for Newsletter in green type at the bottom. Keep in mind we're still a work in progress, but having everything under one roof is amazing. We have two large rooms that have been designated storage rooms. One is for long term storage (all those themed items and leftover crafts from the past several years) along with our logo-ware and adaptive bath items. The other storage room has our typical office supplies and such along with the things we will use for each camp season. It is a room where we can unload, restock, and get ready to reload for the next camp. 

Both rooms will get a face-lift during the off-season, which is getting shorter and shorter each year. We also have Lauren's open space office out front. There are three more private offices where Larry and I have chosen ours, and one additional office space that hasn't been identified yet. The suite wraps up with the huge room for our Chimers to rehearse as well as a place for our Board of Directors meetings. There's also a nice open space with a table and chairs for small meetings, lunch, etc. We have a little kitchen area and handicap restroom within the suite, as well. Outside there is a flat parking lot where we can pull up the van and trailer for loading with space to the back of the lot for long-term parking of those vehicles. (Mod Note: A flat parking lot is nice because now we can pull the trailer up to the door of the office without using a vehicle when it needs to be loaded. We don't need to hook it up to a vehicle to move it.)

While Lauren and I will take out the trash and such, I've designated John as our official custodian for the harder jobs. He loves to vacuum and clean things and will keep the space in top shape. So, thanks everyone for your support in helping make this happen. It took us a while but it is so worth the wait.
from the desk of Marylee Nunley Executive Director

Stroke Camp Cruise
Well we are getting some good results with reservations for our upcoming cruise that sails February 21st, 2015 from Port Canaveral Florida.  We will make stops in Cozumel Mexico and Nassau Bahamas before returning to Florida. The ship will dock at both stops which make it convenient for getting wheelchairs from the ship onto land. 

Thought I'd take just a bit of space to elaborate. Unlike camp, I won't be "in charge" of entertainment, activities and such on the cruise. The cruise line has that down to a science with lots of activities to enjoy on board, and optional tours on land. What John and I will be doing is relaxing and enjoying five days with some of the greatest people I've ever known. Three years ago we had about 60 people join us and we expect to exceed that this year. 

Our group will be seated together for dinner each night so we will have a chance to enjoy each other's company in the comfort of those who know and understand some of our challenges. We will enjoy the shows, activities, crafts, shopping and games that are available on board. Everything is optional, so if relaxing is your thing, that will be available, too. 

This cruise is not just for survivors and caregivers or folks who have been to stroke camp. It is for anyone interested in joining us. So, if you'd like to bring family or friends, feel free to join us for a great time. Johanna McCarty, a stroke camp volunteer, is handling the reservations and any questions you might have. She's a retired travel agent and helping us out so that we can cruise again. The flyer with dates and cost is posted on our website at (click on box with the picture of the boat bow to the right of the screen and below our advertisement for the "Now What?" DVD) or contact Johanna for more information at 217-246-2847. 

Strike Out Stroke(tm)
It has been a wonderful season for Strike Out Stroke(tm), kicking off May 4th with the Atlanta Braves and culminated September 10th with the Milwaukee Brewers, hitting 70 major league baseball games and several minor league games in between 

Our Strike Out Stroke(tm) staff has had the pleasure working side by side with Stroke Coordinators, Genentech representatives, stroke survivor groups, and community leaders while planning and executing all 19 different Major League Baseball Events across the country making this our biggest Strike Out Stroke(tm) season to date! 

It is always a humbling experience to witness the passion, care, and concern the caregivers and volunteers show to the stroke survivors. It is even more humbling and incredibly inspiring to meet and witness the strength, courage and progress from year to year of the stroke survivors. They are always willing to volunteer, greet the public and share their stories with grace, poise and energy. The Strike Out Stroke(tm) events would not be the same without our stroke survivor volunteers. They are the real heroes of Strike Out Stroke(tm).  It is for those survivors we are committed to continue the effort to create awareness nationwide and spread the F.A.S.T. message. We know that if we can educate more people to know the signs we will SAVE lives. We are all "first responders" when it comes to knowing the signs of stroke.

Would You Recognize a Stroke 
If You Saw One?
Learn the meaning of F.A.S.T.

 Survivor Spotlight 
David Loger had his stroke in December 2012. Prior to his stroke, he was on the Volunteer Hennepin Fire and Rescue Department for 21 years, and on the Volunteer Putnam County Ambulance as an EMT for 22 years. Since his stroke, he continues to attend the monthly meeting with the other volunteers of the fire department.

In July of 2014 David received the Larry Wilt Citizen of the Year Award, which is an award that is given to a person from Hennepin, Illinois in appreciation for his continuing civic service and for making Hennepin a better place to live. David has always been one of those people who does all that he can to help others.

While serving on the volunteer fire department / ambulance, he was also working full time at a wastewater treatment plant. Even when he was volunteering on the night shift, he would respond for a fire, ambulance call, accident, or to someone's home to help them, and went to his full time job with little to no sleep. Neighbors would frequently call him at all hours and ask for his advice and assistance.

David has come a long way since his stroke almost two years ago. He is still receiving physical therapy and working hard to someday walk without a cane. He has been walking primarily without a wheelchair for about a year. He looks forward to continued improvement and his message for other stroke survivors is: "Don't Give Up!"
 Do you know a stroke survivor or caregiver who should be featured in our next newsletter?
email: or call 866-688-5450.

Sunday, October 19, 2014

Retreat & Refresh Stroke Camp at Oregon, IL

One of the camps I attended this year was near Oregon, Illinois at the Lutheran Outdoor Ministries Center. This is a large facility with very nice motel style accommodations. It even has a zip line but we didn't get a chance to try that.

This camp was sponsored by: OSF St. Anthony Medical Center, Rockford Health Systems, Swedish American Health System and Van Matre Healthsouth Rehabilitation Hospital.

I'm including a few pictures here to give you an idea of what we do.

This is a group picture of the stroke survivors, caregivers and volunteers who attended the camp.


Kyle and Lindsey Wilhelm were our co-directors this year.

And Stephanie Super was our Music Therapist.

Karrie, one of our volunteers, is showing off our camp welcome banner.

This is one of the lodge's out-buildings that housed some of our camp attendees and also served as one of our meeting places and one of our craft centers.

This year we celebrated our 10th anniversary of conducting camps throughout the country. We started in Lewistown, Illinois with one in 2004 and have since grown to 20. Next year we are expecting to have 25 camps. 

We conducted camps in: Monticello, Iowa; Prescott, Arizona; Princeton, Illinois; Woodland Park, Colorado; Ridgecrest, North Carolina; Red Lodge, Montana; Merkel, Texas; Long Valley, New Jersey; Crandall, Georgia; Ashland, Nebraska; Allens Park, Colorado; Elmhurst, Illinois; Green Lake, Wisconsin; and Lewistown, Illinois.

We do skits.

And play games.

We do crafts.

These are called Touch Paintings. The idea is to put on paper what you are feeling inside of you, and the survivors can turn out some pretty interesting art with only using their one good hand.

These are coffee cups that you draw on and then take home to bake-in the design.
Then there is the pampering...get your nails done, a massage,

How about a manicure?

Ok guys we also do some fishing. This is Randy, a recent survivor, and he knows fishing.

Maybe you just want some alone time to relax or perhaps some time to chat with new friends.

This year our theme was American Bandstand. Everyone enjoyed this. We dressed as car hops and served dinner 50's style.

Even "Dick Clark" and his studio hands were there to emcee the show.

And how about a bubble gum blowing contest.

Well that pretty much wraps up a perfect weekend.

If you think you'd be interested in volunteering to help at a camp next year or want to attend as a stroke survivor and caregiver, drop us an email at or go to our web site: for more information.  

Wednesday, October 8, 2014

I Know The Love Is There

The following news article is about a wonderful and very loving couple who attended our Retreat & Refresh Stroke Camp near Lincoln, Nebraska, September 26-28, 2014. I got to talk with them and eat breakfast, lunch and dinner with them for three days at camp. The photos are mine taken at camp. 

by: Sarah Plake, news reporter and anchor for WIBW Topeka, Kansas

Steve an Liz Andersen
TOPEKA, Kansas (WIBW) -- Through thick and thin, in sickness and in health -- Vows couples are supposed to remember when the unexpected happens.

After one Topeka couple suffered through a stroke, they still keep those vows. It is a love that has withstood all.

"It was a wonderful day. A wonderful day."

As he hold's his wife's hand, Steve Andersen thinks back on their wedding day 13 years ago. It was in June, it was 72 degrees, and perfect.

Their marriage has remained that way throughout their many adventures. Auctioneering, boating, taking their RV across the country, and lots of love and laughter along the way.

"We just had the fun of our life."

In 2010, the life they knew changed.

"We were camping all week, we came home, and she had the stroke," Steve said.

Liz agrees next to him and in mumbled speech says, "It was awful."

Steve nods his head. "Yeah."

It was a severe stroke that almost took her. Not just that, but she suffered a brain bleed as well. It didn't look too good.

"They just told me, she's not going to survive this, you need to go home and start planning the funeral. And later on I found out she died twice on the table," Steve said.

But, Liz fought to live.

The four years of hospital stays, rehab, a move to Topeka and definite ups and downs have not been easy.

"My wife was not the same person I knew."

But, because of his constant care around the clock and being around her kids, Steve says the sassy woman he fell in love with is starting to shine through.

And she is still good on the drums.

"The results I see in her, her attitude, her zest for life, she's got her sense of humor back, she's got hope. She's just doing so much better."

She moves a little slower now, but it's still Liz. Right down to her fingernails.

Steve holds up her purple painted fingers.

"Just to make sure she was the way she was before the stroke. She always liked her nails pretty."

He said she always wore fake nails, and made sure she had them at the bedside. When one would pop off, he'd stick another one back on. Now he paints them for her. He files them, buffs them and paints them.

"Her toenails match her fingernails too. She loves her hair, loves makeup, she loves looking pretty. I try to duplicate that now. I'm not quite good at it, but I'm trying. Makeup is next."

Liz getting made up by Deniece, a Physical Therapist
and camp volunteer. I hope Steve was taking notes.

Liz said jokingly he's not sure if he can do it. But he'll certainly give it all he's got.

Liz said it's a little "different" that Steve has to take care of her in every aspect of her life, even the more personal tasks. But it makes her feel good.

"I know the love is there," she said.

It's a love story in its truest form.

"To the moon and back. Times..? Times?" Steve says to Liz, trying to prompt a saying they share.

Liz says, "Ten."

"Infinity!" Steve reminds her. "I love her to the moon and back. She's my best friend, she's everything to me. I wouldn't change it for the world. Right? Would you change it for the world?"

Liz shakes her head.

"I wouldn't either."

Proof she can still dance.

Liz's recent accomplishments are being able to walk 900 feet with her walker. Her biggest fear however is falling because her balance is not quite where they want it to be yet. Steve said she's starting water therapy.

She and Steve still go on adventures like they used to and are thinking about buying another RV. He'll have to make sure it's wheelchair accessible of course.

Since moving to Topeka, they've joined a stroke survivor group, and said he wants to get the message out there about what it's like surviving a stroke and his role as a caregiver.

Go here to see their WIBW video interview: