Sunday, February 22, 2015

Part 2 of 3 - Through the Eyes of a Daughter

Before I begin this week's article:

This week I am presenting the video of the Strike Out Stroke event at the Colorado Rockies baseball game:  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  They may be out of 2014 stock right now but will be restocking soon for 2015. Keep checking.

Through the Eyes of a Daughter - Part 2 of 3

October 2 
"Dad is working so hard! He's walking with a tripod cane & a brace for his R leg with minimal assistance, transfers with minimal assistance, continues to eat well & is progressing with his speech & language. All very positive signs!"

“Just picked Buddy up at his favorite doggie daycare. He was muddy from playing with all his friends. We went to the doggie scrub and got a bath before visiting Bob!” – Debi Cruiz

October 4
"Dad may get tired of his PT daughter the next few months! So proud of him. Look at him go today!"


October 6
"Dad in the EKSO (robotic walking device) today! So fortunate to have access to the amazing technology & highly skilled clinicians at Madonna. Thanks for all you are doing for Dad!

October 8
"Lots of 'firsts' again today! Dad had his first body weight support treadmill session in the morning & then went home to Wahoo this afternoon for a home visit with the OT who specializes in home assessments & can make recommendations for any modifications or equipment that may be needed to enable dad to be as independent as possible at home. We found out this week after only 2 weeks of acute rehab dad may be doing "too well" in the eyes of the insurance reviewers so he may have to be prepared to transition home sooner than expected which puts a lot of stress & worry on mom & dad. He will continue with therapy several times per week at Madonna in the Rehab Day Program. Please continue to pray we are able to get at least another week or two of intense inpatient rehab at Madonna. Dad is in a very critical window right now for brain reorganization & recovery & the research shows the more intense therapy is now the better the outcome. Why don't insurance companies see more than the bottom line?"

October 20
"Dad had a follow up visit with the vascular surgeon today to see if he will be able to do surgery on the right carotid artery that is approx 90% blocked to restore blood flow to the brain. Unfortunately, he told dad the left middle cerebral artery is still 100% occluded (blocked) & that is the main blood supply to the motor cortex portion of the brain that controls right hand & arm function so he will most likely not regain full (functional) use of his right arm. Needless to say this was very hard for dad to hear & he is real discouraged now. A carotid endarterectomy surgery is scheduled for the morning of Nov 4th. I'm so scared he's going to give up. I wish I could make his arm move more. He is so fortunate to be doing as well as he is. It could have been so much worse, but to dad it's the worst it could be. My expertise & experience tells me to keep the faith & remain hopeful as we know so much more today than we did even 5-10 years ago about how the brain repairs and reorganizes itself with continued therapy & practice. Please continue to pray for my dad & family. Thank you!!"

October 22
"Dad had a better day today thanks to the amazing therapists & technology at Madonna. I can't imagine how hard this is for you, but you have come so far & you will keep getting better. Way to go!

Just one more...he even did it with a cane! So proud of you dad!"

"…he cried tears of joy today. God is good!"


"My family and I are so grateful for the top notch care dad has received at Madonna. There are so many hidden blessings that have come & will continue to come out of this difficult situation. Thanks to all our family, friends & Madonna family for your ongoing support & prayers."

October 25
"Dad is moving his arm!!!! So proud of his hard work & determination. God is good!"

November 2

Editor's Note:
This is progress! However, as you saw October 20, he is still facing some surgery. Come back next week to see the rest of Bob's story.

Sunday, February 15, 2015

Part 1 of 3 Through The Eyes of a Daughter

Before I begin this week's article:
This week I am presenting the video of the Strike Out Stroke event at the St. Louis Cardinals baseball game:  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 

logo on the front you can get one at our SOS online store: Click Here They may be out of 2014 stock right now but will be restocking soon for 2015. Keep checking.
Through the Eyes of a Daughter - Part 1 of 3

Editor's Comment: On September 22, 2014, Amy's dad, Bob, had a stroke due to blood clots in major arteries. The following timeline traces his recovery progress, courage, and resolve through his daughter's eyes from July 24, 2014 through February 5, 2015. It will take you from where he is barely able to move to where he is walking on his own without a cane. A remarkable journey.

Amy is a Stroke Program Manager and Physical Therapist at Madonna Rehabilitation Hospital in Lincoln, Nebraska and is a Retreat & Refresh Stroke Camp volunteer at the RRSC camps near Lincoln, Nebraska.

July 24, 2014

"Date night with my dad and Little Big Town!" - Amy

September 22 2014
"Not sure where to start...first of all my family appreciates all your support & prayers. Dad is fairly alert & oriented, is stable from a medical perspective but still is unable to move his right arm or leg, has difficulty speaking and unable to swallow. As a stroke program manager & PT I see patients with similar struggles everyday but nothing prepares you for it to happen to someone so close to you let alone my healthy, active, water skiing, bike riding, motor coach driving, sports loving Dad. The next 36 hours will be critical to his long term rehab & recovery. Many of you have offered to help & we so appreciate that. The best way to help is through your prayers. My mom is so incredibly strong but she will need our support too in the coming weeks/months. Thanks everyone!" - Amy

September 24
“Life can change in an instant. Live every day to the fullest.” - Amy

"Well my dad is showing how determined he is this morning. He sat up, stood & walked to the sink to brush his teeth & then to the bathroom with a wheeled walker & assistance. Next step on to Madonna later today hopefully to continue his rehab journey! God is good! Keep the prayers coming. Dad can feel them helping.


The OT is great! I know her personally & when dad started to take steps she just said "ok let's go Bob" & helped him walk to the sink! It was awesome! He's so determined!

He has maybe trace grasp at times...he has some increased tone we noticed today. He is moving his right leg more today too."

September 25
"Madonna is starting to work miracles! Bob has been moved to room 126."

September 26
"So impressed by Dad's strength, determination & courage! What a difference 5 days has made...thank you for your continued thoughts & prayers...

Way to go Dad!!! We love you."

"Bob is now receiving very aggressive therapies that consume most of his mornings and afternoons. I am also encouraged to attend. Visitors are welcome after 6:30 pm. Room 126".

"He had a special visitor today!"

September 27
"We all went up to see Bob this afternoon! He's looking so good! So proud of him!"

September 29
"Happy 65th birthday Dad! We have so much to be thankful for & celebrate today. Dad is making great progress in all his therapies. What a difference a week can make. His brother Russ came to visit. Tonight we brought in Valentino's pizza & pasta and had cake for his birthday. We're so proud of you Dad! Keep up the good work."

"So many emotions this past dad had a stroke, I volunteered at Stroke Camp in Ashland & today I was honored to attend the 20th annual Madonna Goal Awards where we celebrated the amazing stories of patients who overcame so many challenges on their journeys back to independence. I sat there thinking back on all my family & I have been through this week & felt a sense of peace knowing my dad WILL get better thanks to the amazing staff & technology only available at the place where miracles happen every day & I am blessed to get to work, Madonna Rehabilitation Hospital. Thanks also to all the stroke survivors & caregivers who attended Stroke Camp last weekend & once again reminded me how important it is to raise awareness & continue to pursue treatments & technologies to help those living with stroke. You all are truly amazing & inspiring!"

Editor's Note: Please check back next week to see where Amy takes us as Bob goes from here to further recovery.

Sunday, February 8, 2015

Book Offers New Hope

Before I begin this week's article:
This week I am presenting the video of the Strike Out Stroke event at the San Diego Padres baseball game because our next presenter attended our La Jolla, California stroke camp this year:  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 

logo on the front you can get one at our SOS online store: Click Here. They may be out of 2014 stock right now but will be restocking soon for 2015. Keep checking.

Editor's Note: As many of you know by now, I very rarely plug products on this blog. However, this book by Anne Burleigh Jacobs comes very highly recommended by our own Executive Director, Marylee Nunley, who's husband is a stroke survivor. If you wish to get in touch with Marylee to get her opinion on this book, you can reach her at

Not only is Anne a great writer but she is also a stroke camp volunteer. She attended our first camp of 2015 in La Jolla, California last month. So, I welcome Anne to our family, and I will be posting some of her material in the near future. She also maintains a blog,
If you like her work or have any questions for her you may contact her at:

From Anne Burleigh Jacobs:
"I had the pleasure of attending Stroke Camp last week in La Jolla California.

I went as a volunteer and also to promote my new book, 'Highs, Lows, and Plateaus: a path to recovery from stroke.'


I can honestly say that I gained so much more than I gave! It was a weekend of laughter and camaraderie ~ a weekend of sharing and supporting ~ a weekend of gaining strength from each other. I met some amazing people and have so much respect for the stroke survivors and their loved ones who live each day with the struggles of stroke, and yet they turn those struggles into moments of inspiration and strength.

As anyone there can attest, I cry very easily. Sometimes I tell people that I have “dry eye” and that the lubricating tears are just a side effect of the disorder. Not true. I just cry easily. My daughter says it is because my heart sometimes brims over as tears. At stroke camp, I did not cry tears of sadness. Instead they were tears of release, of celebration for the strength of the human spirit.

Every day we hear about the pain and suffering and cruelty of our world. What I experienced was only love and respect. That is what we need to be shouting from the mountain tops. Not our differences, but our similarities ~ as people. From that we gain strength. Cheers to the Entire Team from “Stroke Camp”. You are everyday heroes !"

New book offers new hope for stroke survivors

Neurological expert shares how bionics/emerging technology

 impacts brain injuries

Stockton, CA – With decades of experience in neuroplasticity and emerging medical technologies, Anne Burleigh Jacobs, PT, PhD is convinced that better assisting stroke survivors begins with a change in attitude from the medical community.

Jacobs new book, “Highs, Lows, and Plateaus: a path to recovery from stroke” is an easy-to-understand guide to recovery after a stroke or brain injury. It challenges health care professionals who concentrate on helping patients to cope rather than understand their condition and explores breakthrough treatment options.

“The book provides hope and inspiration for continuum along the path of recovery,” Jacobs said. “Each step along the path is supported by basic science, concepts of neuroplasticity and the resilience of the human spirit.”

Topics discussed include but are not limited to warning signs of a stroke, emergency treatment of a stroke, potential of the brain and nervous system to reorganize and recover and lastly a variety of treatment techniques as well as mechanical, robotic, and bionic tools that Jacobs believes are the future of rehabilitation.

For more information please visit

“Highs, Lows, and Plateaus: A path to recovery from stroke”
By Anne Burleigh Jacobs, PT, PhD
Price: $14.95
ISBN: 978-1-4918-6231-5

Available by order at:,, and

Editor's Note: Remember, if you use, Retreat & Refresh Stroke Camp will get a donation from Amazon. (near the bottom right of their screen is a search box. Enter "retreat & refresh", without the quote marks, and it should bring up our full name for you.)

About the Author 
Anne Burleigh Jacobs, PT, PhD earned her doctorate in Neuroscience and Physiology from the Oregon Health Sciences University in1995.Dr. Jacobs' research and clinical interests over the past 25 years have focused on the role of sensory and motor interactions for recovery of standing balance, ambulation, and reaching movements post neurological injury. Dr. Jacobs was a co-founder of the Peninsula Stroke Association (now Pacific Stroke Association) a non-profit organization dedicated to stroke prevention, support and advocacy. Currently, she specializes in post-stroke recovery through her private practice. Dr. Jacobs has lectured nationally and internationally on topics related to neuroscience, recovery of sensory-motor function, and motor learning.

If you wish to communicate with Ms. Burleigh Jacobs you may email her at this address:

Sunday, February 1, 2015

Why a 12 Year Old by Illinois State Senator Mark Kirk

Before I begin this week's article:

This week I am presenting the video of the Strike Out Stroke event at the Washington Nationals baseball game:  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
We sometimes think that strokes only happen to the elderly or the infirmmed but here is a healthy young boy who had his stroke when he was only eight years old. The following was adapted from the Retreat & Refresh Stroke Camp FaceBook page dated January 20th, 10am CDT.

Why a 12-year-old is my guest at the State of the Union
by Illinois State Senator Mark Kirk

Every year I have the opportunity to invite one guest to the State of the Union. This year, I invited a 12-year-old boy named Jackson Cunningham because he's my personal hero.

"I want it all back."

It all started with a basketball game at Jackson's school. He was going to spend the day at his grandparents afterwards. While playing outside he didn't feel well. He went inside and got sick. He lost control of his left side and was taken to the hospital. Tests were run with no results. Jackson's pediatrician came to the hospital and immediately had him moved to another hospital. There the life altering news was delivered - Jackson had a stroke.

Half of Jackson's skull was removed during surgery, but he was undeterred. A doctor asked Jackson what he wanted to get out of therapy. His answer was "I want it all back." After months of intensive rehab, Jackson was able to return to school the next fall and start 4th grade with his classmates.

A year after that basketball game at Jackson’s school, I suffered a stroke. I began rehab just as Jackson had - determined to make a full recovery. One day during rehab, Jackson learned about my stroke and decided to send me a letter. The advice I got from Jackson inspired me to work even harder:

"Do not give up on yourself. All the hard work is worth it."

Jackson is one of the reasons I'm at the State of the Union today. Since his initial letter, we have written to each other regularly. Here are just a few of those letters:

February 15, 2012
Dear Senator Kirk,
My name is Jackson Cunningham. I live in Oakwood, Illinois and I am nine years old.

Last year on February 19, 2011, I was eight years old and I had a stroke. Before the stroke, I was a healthy kid. The stroke was on the right side of my brain. I couldn’t move a muscle on my left side. I
had two surgeries before I got to leave the hospital.

After a month in the hospital I went to RIC in Chicago. I was on the fifth floor with other kids. After the first two days they took away my crutches and I have been walking since then. A lot of therapy
helped. All the therapy paid off .

One of my teachers at RIC knew I liked the Coast Guard. She set up a boat ride for me. It was on a Coast Guard boat on Lake Michigan. It was cold but I had an amazing view of Chicago. When I was at RIC, President Obama was just outside my window in his car. He got out of the car and my dad could see him. We found some good pizza places in Chicago like Gino's East, Giordano's and Lou Malnati’s.

I stayed at RIC for a month. I got home on April 19th. I still had to do therapy at Carle,which is in Champaign, Illinois. I also had a tutor who came to my house and worked on school work with me.

This past fall, I started school again. I go for half a day and then go to Champaign for OT, PT and Speech Therapy. I am still doing therapy to help my left side. I can talk fine (my little sister can too
- she never shuts up!). But, I am working on memory and attention.
I do FastForward on the computer to help my brain.

Last week I was in a basketball game at my school. It was the teachers against the kids. We outsmarted them! I hope I will be able to play sports again, like I did before the stroke.

I wanted to wish you good luck. Here's some advice. Do not give up on yourself. All the hard work is worth it. I think you should go on the grown up floor at RIC. They make you work hard and you get
lots of things back fast.

Jackson Cunningham

P.S. Kids Rights! I think kids should get paid to go to school.
May 19, 2012
Dear Jackson,
We appear to have a lot in common. Like you, I was born in Champaign IL (about 45years beforeyou!), we both have survived a stroke and have an appreciation for the RIC and it's people. Your letter was one of the best of many I received. I appreciate your positive thoughts. Your experience provided me inspiration that with the RIC's help a person can recover from a stroke!

As a North sider I would have to consider myself a cubs fan but also enjoyed watching the 2011World Series Championship Cardinals!!

I agree with many of the political views that you expressed in you last letter to me, such as that kids should be paid to go to school. I think of you often because of your letters you have written to me.

I look forward to receiving your next letter and hearing about your trip to Chicago and the legos you purchased with your birthday money!!

I would like to close with some words of encouragement that my mother used to always says "socks up little cabbage" - which is another way of saying "keep your spirits up!"

Your Pen Pal,
Senator Mark Kirk
July 22, 2012
Dear Senator Kirk,
My first week of camp was very hard. I got to do karate and I made space gak. I've been improving a lot. I hope you're getting better too. Maybe I will see you in Chicago before camp is over. I've been eating my meals with my left hand. I have to put on my cast when I get up in the morning until I go to bed! My mom is going to send you a picture of me petting a baby chicken at my nana's farm.  

Little Cabbage
August 15, 2012
Dear Pen Pal,
I too have met Georgia the therapy dog many times at the RIC. She is absolutely adorable. 

Whenever there was an extra empty bed in my room Georgia would find a way to use it. Georgia has one main trick: When her owner Ellen tells her to "VISIT" Georgia puts her head on your bed so you can pat her. She has such big brown eyes that it would just melt your heart.

I'm very happy to find out about how camp turned out for you especially since you had to wear that awful cast. The people at the RIC surely know a lot about how to put you back together.

I know that cast presents difficulties and I am sorry for that.

I'm glad you like Legos. They were one of my favorite things when I was a kid.

Tell your Dad that my favorite thing to eat these days is the granola bars like the kind your Dad makes.

This part is to Ann: After my experience at the RIC I know how vital Rehab is after a stroke. I honestly didn't know this until I personally experienced it. One of the most inspirational people I met in the RIC was a speech therapist named Katherine Borio.

So Ann, I thank you so much for your work with Jackson. It is so important.

Recently I had the opportunity to meet Dr. Betts who founded the RIC in Chicago.

In two weeks I am looking forward to meeting a man named Mark Stephan who is riding his bike 3129 miles across America. He has a web site so you can look him up, but Jackson don't start riding your bike across America without asking your Mom. I'm sure Mark Stephan already checked with his Mom.

Keep working Jackson!!! Make sure you do everything your PTs and OTs say! I'm thinking of you and your sister Jordyn.

Love from your pen pal,
Senator Mark Kirk
February 20, 2013
Dear Senator Kirk,
Ann and I started to write you a letter yesterday and she had to take a phone call. So, guess what I did? I started to type the letter myself, using our Brainstorming notes. Some of the keys on the computer did not have the letters written on them, but I still figured it out. Ann is sending you that letter too. 

I had a fun weekend in Chicago last weekend. We went to a hotel to spend a couple of nights on the anniversary of my stroke. It’s been two years now. We went to Shedd Aquarium, to the Lego story, swam a lot at the hotel and eating only at new restaurants. That was my dad’s rule. That was OK, but I didn’t agree with some things we were eating. He wanted us to go to a Chinese restaurant but I didn’t want to. I liked some of the breakfast places like The Original Pancake House and one good barbeque place. I was happy that I had NO appointments!

My uncle got an A on his Chemistry test in college. I got a B on my math test and an A+ on a Spelling test.

Illinois’s basketball team is doing very good. They beat Indiana, who is number 1 in the country. And Illinois made the Purdue coach so mad they had to take him out of the game. Do you watch any of the Illinois games?

How is Washington? Are you still getting therapy there? Where do you live? Are you coming back to Chicago soon? Where is Cleopatra staying?

My new dog, Paisley, is very smart. She can open the door by herself and get in to my bedroom. She uses her paws as hands to move things on the counter. She lost two puppy teeth. We found them on the floor and on the bed.

My mom’s cat, Sabey, died. He lived 11 years – longer than me. Maybe we will get another cat or a new dog from the same breeder.

I hope you are doing good.

Your pen pal,
Jackson Cunningham
And Jordyn Cunningham too!
February 27, 2013
Dear Jackson,
I got the letter you typed yourself, I’m very proud of your progress keep it up! I am very sad to hear about your loss of Sabey I hope that zombies didn't get her and I'm sure you defended her well. I am writing you this letter from my office in Washington I am very happy to be back at work where I should be, working for all 12.6 million people in the State of IL (that includes you Mister). I recently visited wounded soldiers at the Bethesda Naval Hospital. One of them is planning to do the Bataan March, which is an 11 mile walk—impressive because the patient I talked to had only one working foot. I'll be back in IL in April. Cleopatra is currently destroying my sister's apartment in Evanston, bit by bit.

I've got a good supply of granola bars here at my office; I hope they were made while your dad was at work. Keep your letters coming. 

Your friend,
Senator Mark Kirk

Now 12, Jackson's rehab has paid off also. I am inspired daily by his perseverance. Each step he takes is a reminder of the everyday heroes I am fighting for in Washington.

I am honored to count Jackson among my friends and have him as my guest at the State of the Union. I hope his visit will show him and other stroke survivors that having a stroke doesn't have to limit your potential.

Stroke is the leading cause of disability for adults in the United States, but it shouldn't mean the end to a productive life. Survivors deserve better. It is my mission to create a standard of care to optimize the entire rehabilitation system—by transforming the way researchers, doctors, therapists and hospitals care for patients with neurological disorders and injuries—to give others the opportunity to have the absolute best quality of care possible.

Go here to read the original story and see the highlights, videos and photos:

To learn more about Senator Mark Kirk's work on behalf of stroke victims, please click here.


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.