Sunday, June 30, 2013

They Want a Sentence and No More

The following article was written by professional writer, noted author and speaker, Monica Vest Wheeler, and originally posted on her blog. She has given me permission to reproduce it here on this blog. Monica's blog is titled "Turning empathy into action" and can be reached using this link:  

She mostly writes about many different types of brain injuries and diseases, such as Alzheimer's, and occasionally writes one about stroke. She has published numerous books. According to her blog heading, Monica "...explores how we can lift ourselves and others by turning empathy into action … and the importance of the art of compassion in dealing with Alzheimer's, stroke, brain injuries and other life challenges." Monica is best known for her work on the Help ME Cope & Survive book series:

Monica is also a very active volunteer for Retreat & Refresh Stroke Camp and arguably our best camp photographer. 

I hope you enjoy her writing and visit her blog. And be sure to browse her archived articles, too.

by Monica Vest Wheeler

Stroke: “They want a sentence and no more”
In recent weeks, I've immersed myself in the heavy editing stage of my new book on coping with strokes. I can hear the voices of all the survivors and caregivers with whom I've interacted. I can see their expressive eyes revealing the tragedy of this brutal brain attack, and the joy of conquering challenges that the rest of us take for granted. I keep reading certain passages as I relive those moments when their hearts overflowed with sorrow or their souls wept with pain at how stroke has decimated their world.

I'll always remember the wife who spoke for her husband, who sat in silence next to her. He fully understood every word she confessed, though he could not convey them himself because of severe aphasia that had robbed him of his ability to speak more than a few words or engage in plain old conversations. I had asked her what she wanted the world to know about strokes. And she told it like it is:

“I want people to be more understanding. I have girlfriends, we don’t have couples. They think you can just pick up and go, but you can’t. I also find, too, that they don’t want me to talk about it. They’ll ask, ’How’s Al?’ They want a sentence and no more. That hurts so much. I’ll listen to what they have to say, but they don’t want to hear what I have to say. I’ve gotten to the point where, ’He’s fine.’ ”

My heart aches every time I revisit those words. It's a cry for one of the most basic human interactions, the act of being heard. We need to talk. We need to listen. It's a continuous circle of communication that educates and engages us in everyday life.

So many individuals have taught me the beauty of the art of listening. It takes patience and time, but it is worth every second because it enriches your mind and soul. If we truly want to be heard, we must take our turn at listening. How else will we know what to ask and answer?

If you're going to ask somebody, "How are you doing?" then say it like you mean it, and be prepared to hear their response. I've met the most fascinating strangers that way, and now they're my friends. When I ask, I mean it because I know the answer will enlighten, educate and/or entertain me.

All stroke survivors and caregivers ask is that you give them the precious gift of a few minutes to find out how they're REALLY doing. You might be the one who transforms their day in a positive way and lifts your own at the same time.

I'll end with the famous welcoming words of TV's Frasier Crane, "Hello, I'm listening …"

Monica Vest Wheeler
Turning Empathy into Action
Find me now on Facebook
And on Twitter
Phone 1-309-682-8851
Phone toll-free 1-877-267-4640
Fax toll-free 1-877-636-0634
P.O. Box 276
Peoria, IL 61650-0276

Sunday, June 23, 2013

Billings Gazette - Camp to help stroke survivors

Cindy Uken

The following article was written by Cindy Uken of the Billings Gazette newspaper, Billings, Montana, and published June 16, 2013. The article has been edited slightly by your blog moderator and made to fit the blog's format.

Camp to help stroke survivors cope with lingering disabilities

                                                                                     Photo by LARRY MAYER/Gazette Staff

Sunday, June 16, 2013

Canada - A Different Kind of Camp

by Chuck Jones

This week, at the request of a couple fellow campers, I'm offering a change-up in subject matter that's not stroke related. Retreat & Refresh Stroke Camps are underway and everyone is busy packing or unpacking or attending the weekend camps, and when I get some material about those camps I will share that with you.

The Camp
KCR Camp Lodge
This week, I want to talk about a fishing camp. Last week (June 1-8), I spent five days fishing in Canada, and I thought I'd share that with you. 

The place I fished is called KCR Camp: (

No one seems to know what KCR stands for, not even the owners, Richard and Gloria Castle and their son Rodney, who are the second and third generations of the founder.

 KCR Camp is located in Ontario, Canada, 200 miles north west of International Falls, Minnesota.  International Falls is right on the border of the U.S. and Canada and is known to be the coldest place in the U.S. during winter. 

You can only get to KCR Camp by boat. You drive up past Kenora, Ontario, north west on 596 about thirty miles and park your car at the Whitedog Rapids camp ground and trailer park, owned by Richard's brother, Roger. You load your gear onto their boat and they take you for an awesome ten minute ride out to their island where you stay for the rest of the trip.

The Fishing Hole
Here is a map of the fishing area. A copy of this map is on your place-mat at every dinner in the lodge and it is a pretty accurate picture of the fishing area. I always try to keep mine clean so I can use it the next day to know where I am. Even with a map it is very difficult to find one's way back to camp because it's huge and, from a boat on the lake, everything blends in as shoreline. 

Located about center of this map there is an arrow pointing to the little island where KCR is located. The peninsula just to the right of KCR is a Native American Ojibwa reserve and the source of KCR's 
professional fishing guides. Looking near the top left of the map you will see a large island labeled Boundary Island. That edge of the map there is the border between Ontario and Manitoba.  

Two Dam Fun

At the top center of the map is the Caribou Falls dam that holds back the English River that flows into the lakes and joins the Winnipeg. Northern fishing is usually pretty good here. Walleye has been good also at times.

White Dog Dam
At the right of the map about 3/4 of the way down is the Whitedog dam which holds back the Winnipeg River. There's a bay to the right of this dam that holds a Musky the size of a torpedo. I have seen it cruise right under the boat with my own eyes on a previous trip. My fishing buddy saw it this year coming straight at the bow of the boat. Some day...

Lyle and Guide Pat

I have not caught a Musky on any of my Canada trips but one of the other fisherman at the camp caught one the week I was there, but not at the dam. This fish is 42.5 inches.

The Winnipeg River enters at the Whitedog dam at the right of the map and flows west then north and out through Eaglesnest Lake at the top left of the map and then on to Winnipeg, Manitoba where it empties into Lake Winnipeg. If you go up that far you must be careful not to cross over into Manitoba because there are no big warning signs and all the rules are different.

At the bottom of the map, just left of center, is the Scott River that flows in through a small rapids, and near the bottom right is the Cygnet River that makes an impressive Cygnet Falls when the lakes are at least normal level.

All this water flowing through the entire map is part of the Winnipeg River chain and subject to all the Winnipeg River fishing regulations for that area.

The Results

 I have been going fishing here for several years. Fishing is excellent! I don't do much fishing in Illinois and for a person like me, who is not a fisherman, I do very well here and this year was no exception. 

I mostly catch Walleye in the mornings jigging in water from about four to twenty feet deep using a white or chartreuse 3/8 oz jig tipped with a minnow. However, many time I've caught them while casting for Bass and Northern.  
Walleye too big...goes back in the lake

It hurts to turn these loose. Any Walleye over 17.5 inches goes back in the lake.  The biggest I've ever caught was twenty five inches.

For the Northern I use spoons such as Red Devils, Five-of-Diamonds, anything shiney and Rattletraps. The best for me lately seems to be a silver and blue Rattletrap. The guide this year liked the Five-of-Diamonds. The Northern in the picture I caught a few years ago and it was over 38 inches long. I caught it on a blue and silver RattlinRap. I have that fish mounted. I have not caught one bigger, yet. This year my biggest Northern was only 31.5 inches. The Northern "keepers" have to be under 27.5 inches but you can keep one over 35 inches. It is not uncommon to catch 42 + inch Northern here. Other fishing buddies I've come up here with have caught them that big, just not me.

Small Mouth Bass
The bass I catch on a white 3.8oz jig with a white Twister Tail. My favorite lure and fish to catch. Small Mouth love to jump. If they don't and if you tug on the line just right as you reel them in you can make them jump out of the water. Always a thrill. Between the three of us we caught over 60 Small Mouth this trip. They generally ran from 13 inches to 17 inches but you can only keep them if they're under 13.5 inches and you can only have two in your possession until July when the limit increases to four. You can catch everything while fishing for Smallmouth this way. I seriously believe you could limit out on all species while fishing for Smallmouth. 

Leaving the ole secret "Bass Hole" tired and happy. (Oops, not a secret anymore, eh?)

The Winnipeg River fishing regulations for the area in June allow me to have only four Northern, two Walleye and two Small Mouth Bass in my possession at any time. Possession includes in the boat, cabin, and fishhouse freezer as well as my tackle box and pants pockets. Fortunately they don't count the contents of your stomach.  There are size and slot limits also so care must be taken to make sure you know the rules. The DNR does check from time to time and they are not lenient. I've heard stories. Just like with speeders and red light runners it always makes me feel good to see a poacher get caught.

I always go on what they call the American Plan which includes a cabin with indoor plumbing and heating, maid service, a boat plus gas, and all home cooked meals at the lodge. The only things not included are the guide fees and minnows. Actually, not lunch either, because I always eat the mornings Walleye catch for lunch. Believe me, you will never go hungry! If your diet doesn't allow you to eat fish for shore lunch, arrangements can be made for non-fish meals free of charge. 

Shore Lunch
My son, Mike,  eating his catch of the day.
It don't git no better'n nis!
I have had several different guides over the years and everyone of them is excellent at what they do, and they are fabulous cooks, using an open fire from sticks they gather in the woods and an iron skillet.

I always get a guide because, #1 he knows where the fish are, #2 he drives the boat so I'm free to fish, #3 he cleans all the fish I am allowed to eat and keep plus he cooks the mornings catch, and #4 he cleans up the boat at the end of the day. 

What do I do? I fish, eat, and sleep, then do it all over again the next day.  

Cabin accommodations are very good. There are thirteen cabins on the island. All with a great view of the lake. 

Nice kitchen, but only the refrigerator gets used. You can do a housekeeping trip where you cook your own meals rather than eat in the lodge but the logistics keep me from choosing that option and the camp cooks are much better than I am.

This is the living room and they do have wifi access as you could guess by this picture. Laptops not included. The wifi is nice because it allows me real time gloating with my family and friends. I don't know why they aren't happy to see me when I get home. I send them nice pictures on Facebook.

The bathrooms are modern. And the bedrooms are comfortable. We had a two bedroom cabin so we each got our own room.
View from the porch

This year the lakes were like glass all week. Sunny all day. Morning temps in the high 40's and afternoons in the high 60's. It doesn't get dark until after 11pm but all boats must be in by 9pm. Guides are available only from 8am to 4:30pm. 

Miscellaneous Critters

Looking forward to next time. 
Go here for more info on KCR Camp: (

Sunday, June 9, 2013

Camp Scheduling and More

by Chuck Jones

I have included this year's camp schedule, dates and locations, for those of you not receiving our newsletter. If you live in the U.S. and would like to be on our mailing list, call the office at 1-866-688-5450 or send us an email at and we will include you in future mailings. Unfortunately, we are not able to send mailings outside of the U.S. at this time. 

However, for everyone, the newsletter is available online from our website ( If you go there and click at the left of the screen on "Media/News" you will see a link to "Newsletter". After clicking on that you will see, in the center of your screen, a list of the newsletters that have been published so far for the year. Or you can just follow this link:  

A link to the news letters is also in the list of links at the left of this blog's screen. 

The newsletter is published every two months. The June-July issue should be out by now but we can still get one to you if you want one. The newsletter also contains camp dates as well as dates of other non-camping events going on throughout the year, along with a message from our Executive Director, Marylee Nunley, plus other stroke and stroke camp related information.

The camp schedule is always available on our website also at:  

If you go there click on "Camp Dates/Registration" at the left of the screen. Or you can just follow this link:

The above website also includes maps to the camp location and at the bottom of each camp date, below the map, are clickable boxes to that camp's registration forms for both survivor/caregiver and volunteers. You may register online from the link or print out the forms and mail them in.

I have included even the past camp dates below because I thought you might be interested in seeing all the areas where we have been and will be active this year. You will get an appreciation of how well we are reaching out across the entire country. Next year, we will be at many of these same camps again and even some we have not. 

It is difficult to say where we will be any given year because campsites need to be reserved as early as possible, even months in advance, to ensure their availability and that's hard to do because we have to be sure there is camper and volunteer interest in that area and that we have the funds to make the deposit, let alone pay for the whole weekend. Deposits are usually in the hundreds and even thousands of dollars and non-refundable.  


April 19-21 at Camp Courageous in Monticello, IA
Sponsored by: Mercy Medical Center, St. Luke’s 
Hospital, and University of Iowa Hospital and 

•May 31-June 2 at Highlands Retreat Center in 
Allenspark, CO
Sponsored by: Centura Stroke Network

•June 21-23 at Elmhurst College in Elmhurst, IL
Sponsored by: Alexian Brothers Health SystemNeuroscience Institute

•July 26-28 at LOMC in Oregon, IL
Sponsored by: OSF Saint Anthony Medical Center, 
Rockford Health System, Swedish American, and 
Van Matre HealthSouth

•August 1-4 (Family Camp) at Living Springs 
Camp in Lewistown, IL
Sponsored by: Friends and Volunteers of Retreat 
& Refresh Stroke Camp
•August 2-4 at Cathedral Ridge in Woodland 
Park, CO
Sponsored by: Centura Health
•August 16-18 at Highlands Retreat Center in 
Allenspark, CO
Sponsored by: Cheyenne Regional Medical Center
•August 16-18 at Carol Joy Holling Retreat Center 
in Ashland, NE
Sponsored by: Lincoln Stroke Partnership
•August 23-25 at LOMC in Oregon, IL
Sponsored by: OSF Saint Anthony Medical Center, 
Rockford Health System, Swedish American, and 
Van Matre HealthSouth
•August 23-25 at Camp Menno Haven in 
Tiskilwa, IL
Sponsored by: Trinity Health Foundation

•September 6-8 at Camp Menno Haven in 
Tiskilwa, IL
Sponsored by: Illinois Neurological Institute
•September 6-8 at Chapel Rock Camp in 
Prescott, AZ
Sponsored by: Dignity Health
•September 20-22 at Living Springs Camp in 
Lewistown, IL
Sponsored by: Friends and Volunteers of Retreat 
& Refresh Stroke Camp
•September 27-29 at Rock Creek Resort in Red 
Lodge, MT
Sponsored by: St. Vincent Healthcare

•October 4-6 at Butman Methodist Camp in 
Merkel, TX
Sponsored by: Odessa Medical Center Hospital
•October 4-6 at Green Lake Conference Center in 
Green Lake, WI
Sponsored by: UW Health
•October 11-13 at North Carolina Baptist Center: 
Ft. Caswell in Oak Island, NC
Sponsored by: New Hanover Regional Medical 
•October 18-20 at Living Springs Camp in 
Lewistown, IL
Sponsored by: Friends and Volunteers of Retreat 
& Refresh Stroke Camp

Check the Camp Dates/Registration page of 
our website for the most up to date list of 

Sunday, June 2, 2013

Strike Out Stroke™ - Peoria Chiefs baseball May 23, 2013

For the previous four years, the Class AAA Peoria Chiefs, affiliated with the Chicago Cubs as their farm team, has set aside one day each year in their Home Game schedule to allow us to present stroke awareness to their fans attending the game. This year we have the honor of continuing this event with the Chiefs who discontinued their affiliation with the Cubs just this year and have become the new St. Louis Cardinal farm team. This 5th Annual Strike Out Stroke™ game with the Peoria Chiefs was held on Thursday, May 23rd at the newly named Dozer Park adjacent to down town Peoria, Illinois.

It was a wonderful evening with more survivors and caregivers in attendance than ever before!

We could not have done it without the generous sponsorship of:

Illinois Neurological Institute (INI),
Central States Media,
RE/MAX Martin & Lenkemann Group, and
PIP Printing.

The evening was filled with stroke awareness and education. Fans were given F.A.S.T. magnets when they came through the gates and also had the opportunity to walk through the MEGA Brain and take a short quiz on stroke awareness, detection and prevention at ELSIE our computer learning center.

Prior to the game, during the month of May, our Stroke Camp Coordinator, Lauren Kramer, and others visited 10 schools in the Peoria area teaching students about stroke awareness, detection, prevention, and how to apply the acronym F.A.S.T. to tell if a person is experiencing a stroke and needs immediate hospital attention. Jan Jahnel and Teresa Swanson-Devlin, Stroke Coordinators for INI, attended the classes and helped educate the students.  Also in attendance at the classes were numerous stroke survivors and caregivers from the Peoria area.  Over 600 posters were judged by the Retreat & Refresh Stroke Camp staff and volunteers for best of show, and the student with the winning poster is given the ride and experience of a life time.  

The winner of the poster contest is awarded with a flight onto the ball diamond's center field in the OSF Life Flight helicopter,

and the honor of throwing out the first pitch of the game. 

Congratulations to DJ Rodgers from Peoria Christian Middle School! 

DJ was accompanied by his father, Derrick Rodgers.

Is that a proud papa? Yes, it is!

And this is what DJ made to earn this most coveted award:

As part of the pre-game activities, attending stroke survivors participated in making up a Dream Team. They were each assigned a position on the field, and took that position with the Chief's player and were announced with the player during the starting line up. They also got an autographed ball by that player.

Dream Team members were Sandy Avery,

Jackie Devall, shown here with her son Hunter,

Bill Hart,

Lyle Nannen,

John Nunley,

Randy Randall,

Dawn Robinson,

Bob Scott,

Mary Ellen Snider,

and Doug Smay.

Other stroke survivors attending but not on the field are:

Larry Morris (survivor), with his daughter Lori. Lori is a librarian and teacher at the school DJ is attending.

This is Larry Morris' wife, Georgia, hamming it up in front of the camera with Associate Director, Larry Schaer. Georgia is a long time volunteer, contributing her time and talents for the camp, as well as being caregiver for her husband Larry.

Mert Berlett (survivor) and her daughter,

           Mel Hisey (survivor) and his wife Dora,

Denise McGowan (survivor), her husband Ken and daughter, Emily.

Mary Kay Pilat of Illinois Neurological Institute and her husband Tom are much valued volunteers at camp events.

And introducing the Directors of Retreat & Refresh Stroke Camp:

Marylee Nunley - Executive Director

This is Marylee being interviewed by Nathan Baliva, Director of Media & Baseball Operations for the Chiefs. Marylee does interviews very well.

Larry Schaer - Associate Director

This is Larry keeping his wife Bonnie from entering without a ticket. Larry, check in her left hand. She has a ticket.  

Lauren Kramer - Stroke Camp Coordinator

Lauren is also responsible for organizing the poster contest for the fifth grade classes in the area, as well as all of our camps we have throughout the year and, as you can see, an excellent on-field and dugout coat check girl.

Thank you to Illinois Neurological Institute for making commemorative baseball cards for the Dream Team members and for being the major sponsor for this year's Strike Out Stroke™ event.

INI folks whom we could not do without:

Teresa Swanson Devlin,
Jan Jahnel, and
Dr. Wong

Dr Wong delivered the on-field welcome before the National Anthem.

These three have done so much for the camp, we are forever indebted to them.

We’d also like to extend our thanks to the following businesses who sponsored an inning and donated $50 to Stroke Camp for each strike out in their inning:

Mid Illinois Companies,
Legacy Insurance,
Chem-Dry Clean Masters,
Peoria Communications,
Gabberts Cleaning,
State Bank of Speer,
Peoria Logo,
Total Income Tax,
DBA Marketing, and
CT Gabbert Remodeling & Construction.

There were a total of 13 strike outs in the first nine innings for $650 in donations to Stroke Camp!

For those of you keeping score, it was a fantastic game, and the Peoria Chiefs won the ball game over the Kane County Cougars, 9-8 in 14 innings.