Sunday, November 16, 2014

This is my new normal

article by Monica Vest Wheeler
song by Jessica Leza

I was so thrilled to put together this short video with photos I shot during the Retreat & Refresh Stroke Camp for the amazing folks in Odessa, TX, thanks to the generosity of the Medical Center Hospital.

The music is what our music therapist composed with the exact words of our stroke survivors who shared many emotional moments during the entire weekend in early October. I was privileged to be involved with the survivor group and hear and commit their thoughts to MY heart and soul … a constant reminder of why our mission at Stroke Camp is so vital and means so much to ME personally and professionally.

I was deeply moved by what I witnessed all weekend, as you can hopefully see in these images. I love these folks. I love all MY campers everywhere! I love MY life!

Blog editor comment: Thanks to Marylee Nunley, our camp Executive Director, who sent me this song created by our music therapist, Jessica Leza, and to Monica for making the video.

Click here to see the survivor song video. This will open a new window so you can click back to this one while it's playing and read the words or sing along with Jessica. And, maybe, shrink the windows so you can get them in split screen so you don't miss the pictures.

Be aware that the video starts with the second sentence, "Have some patience; keep it slow; I know"

Survivor’s Song (I Want You To Know) Stroke Camp (2014)

Someone told me long ago:
Have some patience; keep it slow; I know
This is my new normal.

I just want common courtesy.
Fatigue doesn’t mean that I’m lazy. I know
I am who I’m supposed to be.

I want you to know that I’ve changed, but I’m still the same.
I want you to know that the stroke doesn’t change what’s inside,
and I’m doin’ the best I can.

We try to do so much, people don’t understand or know
All the frustrations we have.
The simple things still make me happy: music, coffee, and my family,
I know we’ll get through this together.

I want you to know that the Lord’s come a long way with me.
I want you to know that our God isn’t through with me yet.
And today He has blessed us all.

If someday I’m feelin’ down, let’s just get out of the house.
Did you know I still like to try new things?
If I laugh at the wrong time, If I’m happy but I cry,

You know, I’m trying to get myself together.

I want you to know I feel proud to do things on my own.
I want you to know to call me if you’ve got lawns to mow,
Even if it takes me all day.

One last thing for you to know: even if my words get lost -
Just don’t tell me never, ever.
I’ve still got my mind and heart and those are the things I need
To get me where I want to be.

I want you to know that I’ve changed, but I’m still the same.
I want you to know that the stroke doesn’t change what’s inside,
and I’m doin’ the best I can.

Sunday, November 9, 2014

Lincoln, Nebraska, Retreat & Refresh Stroke Camp

I always enjoy camp at Lincoln, Nebraska. Actually the camp is at the Carol Joy Holling, Swanson Center, just outside of Lincoln, in Ashland. I've been to three of them in the last four years. I thought you might like to see what we do there and see the wonderfully crazy, and wonderfully warm, friendly people I meet there.

Our camps are weekend retreats, Friday afternoon through Sunday afternoon, where stroke survivors and their caregivers get to relax, feel normal, have fun and let us do all the work.

First, I'll introduce you to the campers and volunteers.

See, we had such a good turnout that they don't even fit on the page.

And here is where we camped. At the Carol Joy Holling, Swanson Center.

The building has very comfortable motel style rooms. Each camper couple has their own private room with private bath, and all meals are cooked and served right in the building.

The camp Director and Operations  Manager this year were Larry Schaer and Lauren Kramer, respectively, both from the Peoria, Illinois home office. Larry and Georgia Morris, also from the home office, were in charge of crafts and pampering.

If you've read about the previous camps I've posted on this blog you know that we always open with a drum circle lead by a Music Therapist. This year it was Jenny Denk. She did a wonderful job. She lead the previous years, also.

Jenny also provides music throughout the weekend for skits, mealtime grace and 
post-mealtime fun.

We always have crafts for campers to test their skills. This year we had coffee cups that could be decorated with marking pens and taken home to be baked in the oven to preserve the artwork.

One of the highlights of the craft time was a technique called touch drawing. It involves placing on paper what you are feeling right now. You'll notice the extra protection needed to prevent the paint from becoming a permanent part of your wardrobe. The thick paint is applied to a board and the paper placed on top of that. Then using primarily your hands, you rub, carve, scrape, whatever you are feeling at the moment. After that you can touch up with a stylus as you see here. When the paper is lifted and turned over, the results are some very interesting designs.

Another craft item was a memory board made up of magazine cutouts.

We also set aside time for pampering.

These macho guys got manicures, too

That includes manicures, makeup, massages, beauty tips, and meditation led by a trained... uh ... meditationer? (well, okay, I don't know the official title.) 

During free time we had fishing, 

paddle boating, 


and just plain relaxing and visiting.

We even had a campfire at night for relaxing around, enjoying roasting marshmallows and s'mores.

This year we divided the camp into smaller groups and had them produce videos based on popular 1950's movies. Here's what happens when we let camper imaginations run free:

No, I'm not even going to try to guess what the movie titles were now.

This year's theme was the 1950's and American Bandstand. 

We served our campers dinner 50's diner style.

And invited "Dick Clark" and his co-hostesses to emcee the American Bandstand dance show.

I think some of our 50's music struck a chord with some of our survivors because they couldn't sit still and had to get up and go to it.

After the show we had a live band out on the patio to finish up the night. The band was provided by one of our camp volunteers and Physical Therapist, Cali Carlson. Her father is the guy on the left, and her sister is singing. They entertained us for the rest of the evening with 50's and 60's songs. These kids are good!

This year is our tenth anniversary of providing camps for stroke survivors and their caregivers. We started off with one camp per year in Illinois back in 2004 and have since grown to 20 camps per year all throughout the United States, boarder to boarder. 

Next year we are planning to grow to 25 camps. 

We are also providing stroke awareness to the community through our trademarked Strike Out Stroke (tm) events at Major League and minor league baseball games throughout the country and through our MegaBrain exhibits and Learning Center exhibits at universities, shopping malls and convention centers.

If you would be interested in volunteering to help out at one of our camp please contact us at or phone us at 866-688-5450 or locally at 309-688-5450.


Sunday, November 2, 2014

Depression and Stroke

The following article is taken from the current issue of StrokeNet Newsletter at:

I urge you to visit this site as it contains many excellent articles pertaining to strokes and personal experiences of stroke survivors and caregivers.

This article that addresses depression is authored by David Wasielewski who is a member of the StrokeNet Newsletter staff. 

You may contact David at:

Tip of the day: This simple tip is from Claudia R Warner a contributor to the StrokeNet Newsletter. You may find her article at:

"One important, yet simple thing is a name badge. Wes has aphasia and wears a plastic name badge engraved with his name and the words “I understand you but it is hard for me to talk.” You can’t imagine the amount of positive comments we heard about this from doctors, nurses, therapists and anyone else who came in contact with Wes! They said it helped them so much in communicating with him."

Depression and Stroke
By David Wasielewski

Reactive vs Clinical

As stroke survivors we, and often our caregivers, are tasked with overcoming a variety of challenges. The physical challenges that can accompany a stroke are obvious to those around us. The mental and psychological challenges are less so. A common challenge that we often face following a stroke is depression.

To an outside observer depression is often perceived as a profound sadness or anger that overtakes an individual. To the individual experiencing depression the situation is rather one where they experience a lack of these and most any other emotion. It is described by some who have written about their condition as a profound emptiness, a sense that one simply does not care about themselves and their surroundings.

The circumstances that would normally cause us to be happy, sad, angry, interested and curious simply have no effect. The connections that drive us though our daily routines, that motivate us to perform certain tasks, are lost for the depressed. For the depressed, life becomes empty and meaningless without these connections and emotional responses.

Psychologists identify two distinct types of depression. Reactive depression is where the individual becomes depressed as a result of some emotional or physical shock to their life circumstances. The loss of a loved one or a disaster that takes one’s house can result in a profound emotional shock that leaves one unable to process life events as they normally do. This is seen as a normal response to a traumatic event in one’s life. For most individuals it is something from which they recover over time. As the shock of a traumatic event wears off the individual is able to return to normal.

The other type of depression is called clinical. With clinical depression an individual experiences a depression that may or may not be related to a specific event. The individual becomes depressed and remains in that state for an extended period of time. Understanding the difference between these two conditions is often important for stroke survivors and especially for caregivers. In the process of stroke recovery it is normal for the survivor to take time to process their post stroke condition.

They need to recognize and process the mental and physical losses associated with their stroke. These losses are often significant and, as with the loss of a loved one, represent a severe shock to the system. The reactive depression associated with these losses is normal. The recovery from these losses might be extended due to the stroke if the stroke also affects the survivor’s ability to recognize and process this information. It is important to understand that the reactive depression is a normal part of recovery.

If, however, the depression remains for an extended period of time the survivor may need to seek help. The challenge with stroke is to determine what ‘extended’ means in your particular situation. It is often up to the caregiver to understand and recognize the condition and alert the proper medical professionals of your concerns. The survivor may not be able to recognize or understand the condition themselves.

The survivor may not be willing to admit to being depressed. Treatment for depression is important as a long term depression can affect one’s health, recovery and in the most severe cases can result in suicide. A depressed survivor is not motivated to exercise, concentrate or put forth the significant effort required for recovery.

The caregiver needs to help the doctor determine if a survivor’s activity or attitude seems normal for them or if there is some significant problem in the survivor that needs to be addressed.

It is important to recognize, as well, that there are effective treatments available that help a survivor overcome depression. Depression is not just an undefined emotional response but, as research suggests, can be traced to identifiable chemical imbalances in the brain. A stroke can alter the chemistry of the brain as it deals with the loss of cells and cleans itself. A stroke might also affect the limbic system that resides within the brain.

The limbic system is a collection of cells or nuclei that excrete or distribute mood altering chemicals throughout the brain. Brain cells communicate with each other by releasing then reabsorbing a variety of chemical compounds into the microscopic spaces between the cells. For example, when a danger presents itself, it is the limbic system and its chemical messengers that alert the body, causing the fear and anxiety associated with that danger.

In normal circumstances it is the limbic system and its chemical messages that cause us to be happy, sad, anxious etc. If these cells are directly damaged by the stroke the ability to experience normal emotions can be severely impaired. If the limbic system is not directly affected the brain may be altered in more subtle ways. These changes can affect one’s ability to fully recover from the short term, reactive depression described earlier. One brain chemical, Serotonin, has been identified as important in maintaining one’s sense of well-being. A Serotonin deficiency is often associated with depression.

The good news here is that once depression is recognized it can often be successfully treated. Medications that alter brain chemistry are available. Most readers will recognize Prozac as a treatment for depression. This drug blocks the reabsorption of Serotonin in the patient’s brain cells, often increasing the patient’s sense of well-being, helping to overcome depression.

Other treatments, too numerous to detail here, are also available. It is known that each individual can react differently to these medications due to the complexity of the brain. With this in mind, it is up to the doctor to experiment with the types and doses of different ‘antidepressants in an effort to determine which medication and which dosage will be most effective for each survivor

The point here is to recognize that, in stroke survivors, some depression is normal but extended periods of depression are not. Since we all know each individual is different we need to pay attention to what depression is and how long it lasts. We need to determine if and when it is appropriate to alert your medical team of the possibility of a clinical depression and seek treatment when necessary. Depression is a mysterious condition, even in healthy individuals. It is even more of a challenge to stroke survivors but needs to be recognized and dealt with in order to promote the fullest mental and physical recovery.

Much of the information presented here is contained in an instructional CD set entitled “Understanding the Brain” available through Great Courses: