Sunday, January 25, 2015

Dancing with Stroke

Before I begin this week's article:

Starting with this posting I am going to include a one and a half minute video every week of our Strike Out Stroke(tm) event at major league baseball games. 

This week I am starting with the Chicago White Sox game because, well, I live in Illinois and we haven't done a Cubs game yet, and I'm proud of the White Sox, too. Click Here

By the way, if you liked that white Strike Out Stroke T-Shirt or baseball cap you saw in the video with the 

emblem on the front you can get one at our SOS online store: Click Here

The following article is taken from the current issue of StrokeNet Newsletter. I urge you to visit this site as it contains many excellent articles pertaining to strokes and personal experiences of stroke survivors and caregivers.

The StrokeNet Newsletter may be reached at:

This article that addresses stroke terminology is authored by Jim Sinclair who is a member of the StrokeNet Newsletter staff. 

You may contact Jim at:

By Jim Sinclair

Stroke Terminology

The New Year should be one of those occasions with which stroke survivors are most comfortable. It is a time to start anew, presenting new challenges and opportunities. It provides incentive to set new goals in which we resolve to be more the person we would like to be. For many stroke survivors, including me, one of the first major post stroke issues with which we are confronted is a feeling of loss of identity and a need to redefine who we are.

The process of redefining ourselves can be fraught with confusion, anxiety and struggle. This process can be somewhat less complex if we function in a community in which we have a clear agreement and understanding of language and terminology used. I became aware of this quite some time ago when I was contacted by Stroke Network participant Phil Mickelson with regards to his concern over my use of the term stroke survivor.

For some, such as Phil, the primary difficulty of the descriptor of stroke survivor is that it can lead some to assume that survival is enough in itself, when there needs to be a lot more to life than simply existing. At first I agreed with Phil that the term stroke survivor was lacking. Following a great deal of thought I came to realize that we need a better understanding of our stroke terminology. This is much more of an issue than simple semantics. Having a positive attitude and optimistic approach are important attributes for attaining a successful recovery. These attributes are far more likely to be exhibited in an environment where the language is expressed in positives rather than negatives.

Having had to deal with speech issues of my own and being cognizant of and empathic towards stroke survivors, I generally try to not be critical or judgmental of things said by stroke survivors. I do on occasion try to correct statements made by survivors and others that include terminology that could be expressed in a more positive or beneficial manner. The term that most often leads me to interject with intent to change a statement made occurs when someone refers to themselves or someone else as a stroke victim.

Within a great many communities including our stroke community this has somewhat of a disempowering connotation. When someone I am with uses that phrase I generally interject by saying “There are no stroke victims here; the stroke victims are those who died.” We survived something that kills a great many people. Being a Stroke Survivor implies an inner strength and ability which will empower us to deal with all those issues and difficulties that arise during our journey of recovery.

It seems rather unfortunate that at during a journey of recovery; a process which requires a positive attitude and optimistic approach, much of the language is expressed in negative terms such as disability and nonabled. During a journey of recovery it would be of value to have language that emphasizes one’s abilities. One day last fall Malcolm McKenzie, Manager of Patient Care in the Neurorahabilitation Unit at Riverview Health Centre, related the story of a young man who upon being referred to as disabled retorted that he prefers to consider himself as being differently abled.

Expressing language in positive terms such as this can promote more of a positive self-image as we proceed through the process of redefining who we are. As we progress through Neurorahabilitation our therapists employ terms that focus upon our abilities. Typically our actions are described as being with two assists, being with 1 assist, being with one standby, and ultimately, we hope, unassisted.

When we are discharged back into the community, our mobility tends to be described as being unassisted or with the assistance of some form of aide such as a cane, walker or wheelchair. Being assisted places the emphasis on the ability that exists. Somehow once back in the community the tendency is for the language usage to be more negative; there is greater use of the terms disabled, nonabled, Walker dependent, Wheelchair dependent and Wheelchair bound.

In the first few weeks following my strokes as I struggled to cope with the physical damage and cognitive confusion resultant from the strokes, I had the good fortune to have had a neurologist who kept emphasizing that a full recovery was possible. At the time, while I was rather unclear exactly what that meant; I presumed that things would return to the way they were prestrike.

The statement was expressed in such a way as to instill within me a confidence and belief that everything was going to be okay and that I would get through all the challenges ahead of me. When this positiveness was reinforced by the support of a hospital roommate who was a longtime stroke survivor I had a positive solid base upon which to begin a successful journey of recovery.

Knowing how truly blessed I have been in my recovery and having an all consuming sense of gratitude to those survivors who helped me along with my progress I have spent much of my time the past five years trying to provide similar positive supports to other recent stroke survivors. I find that in my role as a Stroke Survivor Peer support Volunteer in hospitals in Winnipeg, Manitoba and Mesa, Arizona being very clear about the terminology I use seems to be very beneficial for achieving my goals.

Over the past five plus years I have had the great privilege to have spent one to one time with over 500 stroke patients in hospitals (mostly in Neurorahabilitation ) and have made presentations to groups involving hundreds more. While I keep my focus on the specific unique situation of each patient I do most often try to accentuate a few general things. I try to get survivors to think in terms of possibilities and that while there are no guarantees anything is possible.

I would like everyone to believe that having survived an event that kills a great many people demonstrates a strength and ability which will enable them to do what needs to be done to attain a full recovery and that a full recovery refers to attaining a quality of life which is meaningful and satisfying in whatever terms they choose.

As a Stroke Survivor Peer Support Volunteer (peer Counselor) the greatest compliment that a stroke patient can give me is their saying “You’ve given me hope” when all I’ve done is help promote optimism and having a positive attitude with respect to possibilities. 

Copyright ©January 2015
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Sunday, January 18, 2015

Life is a journey

Visit our Retreat & Refresh Stroke Camp web site at:

Life is a journey ...and sometimes there are unexplained and unpredictable changes. Some of the changes are immediate and others require a new beginning. Recovery from a stroke (or living with a stroke survivor) requires courage, patience, love, and support from family, friends, and the community.

Retreat & Refresh Stroke Camp strives to offer an enjoyable and fun-filled weekend with other stroke survivors, caregivers, and family members with the emphasis on education, socialization, relaxation, and support.

Welcome to the Retreat & Refresh family! We hope you and your family member(s) will visit our website often as you travel the ever-challenging post-stroke journey.

The Retreat & Refresh Stroke Camp website provides information and resources offering a better understanding of stroke while helping survivors move forward and begin anew.

Our website contains helpful information including:

• Links to our blogspot, video clips, and resources

• Recommended reading materials

• Calendar of camps and events

• Registration form for campers and volunteers

• Photo gallery from each camp

And much more that will provide a greater understanding of stroke and its continuous challenges. Online visitors will find value in this website . 

Also, be sure to visit for stroke awareness events at major league and minor league baseball games near you.


Wednesday, January 7, 2015

Music, the Brain and Therapeutic Results

Okay, I missed the date for this due to back-to-back: death in the family, Christmas, and New Year. but go here anyway to see what it was all about. I think you'll find it worth your while.

The following video is recommended as a primer before this program.

Music, the Brain and Therapeutic Results
Guest: Concetta M. Tomaino, DA, MT-BC LCAT
Host: Alex Doman
January 7, 2015, 8pm ET (1am GMT)
Cost: Free - Open to The General Public
Dial-In Teleseminar
What does contemporary neuroscience tell us about music and the brain? How do these findings support clinical applications of music therapy in child development as well as recovery or maintenance of function in adults with brain injuries? Drawing from research and her extensive clinical work, many chronicled by Dr. Oliver Sacks, Dr. Tomaino provides an overview of music and the brain and shares evidence for the efficacy of clinical applications of music in stroke rehabilitation, enhanced function in Parkinson's disease and improved memory and quality of life in those with Alzheimer's disease and dementia. Join Alex Doman and his guest Concetta Tomaino for insights into music and the brain. This program will help you understand:
  • How is music used in therapy?
  • What is music therapy?
  • What are some of the clinical applications of music to help those with Parkinson's disease, Alzheimer's disease and stroke? Children with developmental delays?
  • How is the field of neuroscience helping inform the field of music therapy?
Go here to learn more about the listening program:


Sunday, December 28, 2014

Ten Wonderful Years

We had a very productive year in 2014, expanding our camp venues and our Strike Out Stroke(tm) events. As you can see we celebrated our tenth year of providing camps throughout the country and raising stroke awareness. 

The following photos will take you through our ten year journey.

I'll give you time now to catch your breath, rest up, because in 2015 we are expecting 25 camps throughout the country and Strike Out Stroke(tm) events at each of the major league baseball games. 

If you are interested in promoting Stroke awareness or in helping out at one of our camps, please contact us at or call our office at 309.688.5450.

Sunday, December 14, 2014

Care Partners - Unsung Heroes, by Deb Theriault

The following article was written by Deb Theriault, a member of the StrokeNet Newsletter staff, and published in their August 2014 Newsletter.

If you have not yet visited their site, I urge you to do so as there is a wealth of information and articles on strokes published every month. 

In this article Deb addresses a role she calls Care Partner. As you read this you may see yourself being portrayed. I hope you come away from this with a sense of pride and self-worth knowing that you really do make a difference in someone's life and the support you are providing is also important as that of a Caregiver. You will see as she describes the difference between the roles.

StrokeNet Newsletter Editor: "Carers have many roles. Deb suggests that her experience shows that there should be a distinction between Caregivers and Care Partners. Read her article to understand where she is coming from."

Unsung Heroes

By Deb Theriault

Back in the 1990’s, I had to do many everyday things for my father, who had developed Parkinson’s disease. I handled all of his paperwork and financial affairs, made sure he went to the doctors and took his medications, was with him whenever he was hospitalized and, ultimately, had to find him a suitable assisted living facility. Once he was there, I then had to communicate with the facility people to make sure that his needs were met.

However, I didn’t consider myself a “real” caregiver since I didn’t have to handle my father’s more physically intimate needs. I remember attending a local Parkinson’s support group with an acquaintance whose father also had Parkinson’s. Unlike my friend, I didn’t have to prepare food for my father or feed him, help him with bathing or assist him with his toileting functions, so when the support group had a “caregiver’s recognition day,” I felt like a fraud when I received one of the white carnations that were handed out to the caregivers in attendance. I knew I was devoting a lot of time and energy looking after my father’s many needs, but I didn’t feel like I was in the same “caregiving league” as my friend.

Likewise, over the years I’ve received a lot of correspondence from spouses, partners and family members of stroke survivors who feel the same way. Many people who are in the survivor’s orbit often say things like:

“I’m not their actual caregiver, but I help them out a lot by reminding them to take their pills, going with them to the doctors, and doing errands and household chores that they can’t do anymore.” OR

“I don’t have to give them baths, get them dressed or brush their teeth, but I’ve taken over buying food and meal preparation, because their attention span is off just enough that I fear for their safety going out alone, or when working around a hot stove.” OR

“I now do all the finances, bill paying and other administrative chores, as well as keep track of all their appointments and medications, because he/she doesn’t have the concentration or focus that they used to.”

Some people may argue that the above duties actually do describe those of a caregiver. But others would point out that while these activities are a part of the stroke survivor’s total world, they don’t include hands-on activities such as personal hygiene, toileting, and feeding. If they don’t perform these types of duties, many spouses, partners, family members and friends of stroke survivors feel that they’re not “real” caregivers.

But, if these thoughtful, giving people aren’t caregivers, then what are they? Maybe it’s time to think of these individuals in a different light, and to “re-brand” their role as that of a “care partner,” someone who is deeply invested in the well-being of the stroke survivor, but who performs the less physically intimate tasks that keep the survivor’s life in order and enable them to live more normally.

This re-branding won’t be embraced by everyone, but a care partner designation helps to clarify the care partner’s role. It acknowledges that care partners direct and coordinate many aspects of their loved one’s day-to-day activities and care, even if it doesn’t involve feeding, bathing and similar functions. This designation also recognizes that care partnering is just as important as traditional caregiving, and that care partners are just as essential as caregivers, even if their associated tasks are sometimes different.

It should be noted that the caregiver and care partner roles often overlap and aren’t necessarily “static.” They can swing back and forth, as the stroke survivor makes progress but then experiences setbacks. However, as the stroke survivor once again becomes more adept and independent, his/her caregiver can transition back into the role of care partner in the survivor’s life.

Care partnering can also take place at a distance, as in the case of adult children who coordinate the care of parents who live across the country from them. It’s not truly accurate to describe these individuals as caregivers (since they’re not in close physical proximity to the people they’re caring for), but it’s easy to think of them as care partners since they’re still intensely involved in coordinating, and making decisions about, their parents’ daily care.

Most people learn how to be care partners “on the job,” but there’s a lot of information on the internet that can help care partners, and caregivers, to do their jobs better. Much of this info can be found on disease-specific websites, which provide advice to caregivers of people who have those associated illnesses or problems. For example, the Stroke Network has a wonderful caregiver’s forum for people who take care of stroke survivors.

But, there’s at least one resource out there that isn’t associated with any one illness or condition. The “Care Partners Resource” has a good website that addresses both caregiving and care partnering. They can be found at:

Additional resources can be found by “Googling” words and phrases such as “care partner”, “care partnering”, “caregiving”, and like terms.


Sunday, December 7, 2014

Things you should know about a stroke.

A stroke is caused by blockage of an artery or blood vessel preventing blood from getting to your brain cells. This blockage causes 1.9 million brain cells to die every minute. No age group is immune from a stroke. Even infants can have a stroke.

If not treated immediately, stroke will, among other things, affect your ability to speak, your ability to walk, and even to feed yourself. In general, you will not be able to take care of yourself. Getting immediate help can reduce the severity of these effects. Recovery can take a lifetime.

You can tell if a person is having a stroke by using the acronym 

to recognize the following symptoms:

F. (Face) - Does one side of their face droop?

A. (Arms) - If they hold their arms straight out in front of them, with eyes closed, does one arm slowly drift down?

S. (Speech) - When you ask them to repeat a simple sentence like, "Mary had a little lamb.", is their speech slurred or sound strange?

T. (Time) - Call 911 immediately!

Other symptoms are: trouble seeing in one or both eyes, confusion, severe headache, loss of balance and inability to move on one side of the body.

Calling 911 is essential because time is critical, and the Emergency Medical Technicians can do a preliminary diagnosis and get a stroke team standing by while they are en-route to the hospital. You have a very limited time to get effective treatment and much of this time is spent in diagnosing the severity and type of your stroke.

Certain types of stroke, such as Ischemic, can be effectively treated with a clot busting drug called t-PA. It is an FDA approved drug researched and developed by GENENTECH. 

t-PA must be administered within three hours of the onset of stroke symptoms to be effective.

You can reduce your chances of having a stroke. Know your risk factors. They include: high blood pressure, high cholesterol, diabetes, smoking and low physical activity.

Face. Arms. Speech. Time.
Here is a screen shot from our Retreat & Refresh Stroke Camp Learning Center that we use to promote stroke awareness.

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.