Sunday, December 29, 2013

With Notebooks and Camera - Monica

By Monica Vest Wheeler

Equipped with notebooks for interviews and my camera for what I was sure would be my first and only Retreat & Refresh Stroke Camp, I turned onto that loooooong dusty, dirty road to reach this place called Livings Springs, hidden off the state road in Lewistown, IL, in June 2008.

Marylee Nunley and some other folks were there to greet me as I donned my name badge and offered my assistance as a weekend volunteer.

Marylee introduced me to her husband, John, who had survived his September 2001 stroke and was a friendly greeter. 

I found myself observing more than interacting, but that was okay. I was still rather shy and felt much more comfortable listening and shooting photos.

The first gathering was the drum circle, in which campers — stroke survivors and their caregivers — joined the volunteers. Susan Bock, the music therapist, tried to coax me to take an instrument and sit in the circle, but I politely said I’d like to take photos from the outer rim and learn while watching.

She smiled and understood.

I saw caregivers and survivors of all ages,

from a young married couple to a mother accompanying her adult son who suffered a stroke after being shot in the head.

If I had seen most of these individuals while walking down the street, I would have never known they were survivors or caregivers. And each survivor faced different challenges, from physical deficits such as limited use of one side of their body to the inability to speak more than a few words.
The first clear message I heard was “once you’ve seen a stroke, you’ve only seen one stroke,” which I quickly absorbed and committed to memory.

And the second immediate lesson was that the simplest things in life are truly the most important … laughter, love, tears, holding hands, hugs, being oneself.

Marylee was definitely the hostess with the mostest as she made everyone feel at home in this main building that housed the individual sleeping and bathrooms for campers, and each opened into the main activity and dining room area. 

Caregivers could sit in the main area and talk with other campers and volunteers while keeping a close eye on a sleeping survivor. What a perfect arrangement. I loved it.

To be continued.

Tuesday, December 24, 2013

Boy, Was I Ever Wrong - Monica.

By Monica Vest Wheeler

When I decided in 2008 to write a book on coping with stroke, several people told me I HAD to talk to some gal named Marylee Nunley. I had no idea who she was.

When Retreat & Refresh Stroke Camp executive director Marylee Nunley answered her phone in April 2008, she had no idea who I was. I identified myself as also being from Peoria and the author of a new book on coping with Alzheimer’s and co-author of an earlier volume on cancer. Now I wanted to write about stroke. Oh, and I wrote Peoria history books.

When I showed up at her house a week or so later, I immediately noticed a photo on the entryway wall. Marylee and I had a connection … other than both being short in stature. We had been honored in 2005 at a local event that recognized 25 women in leadership and were in the group photo. And on the magazine cover, my photo was below hers in the block of mini images. But we hadn’t actually met.

As we sat at her dining room table, I explained that I was focusing on brain-related topics for my book series, “Help Me Cope & Survive!” After working on the Alzheimer’s book for three years, I felt this “calling” to work on brain injuries, illnesses and diseases because brain topics often make people uneasy. Many equate any “abnormal” behavior to mental illness and shy away from people acting or speaking strangely. I had learned so much while working on the Alzheimer’s book that I wanted to address stroke, brain injuries, and brain tumors-brain cancer, all together in the next volume.

Marylee taught me more that day about stroke than I would have ever discovered in a typical classroom. Nope, I knew immediately that stroke had to be its own volume, as did the other topics. Her husband, John, had had a stroke in September 2001, and she was his caregiver. Marylee’s family knew more about stroke than 99.9 percent of the population as her brother’s wife, Meme, had had a stroke just two months earlier in February 2008.

After she briefly educated me on stroke, I asked her about this “stroke camp” I had heard about and why a number of folks had recommended I talk to her. With the enthusiasm of a mother talking about her newborn, Marylee told me about camp, a weekend experience for stroke survivors and their immediate caregivers. Hmm, I wasn’t the camping kind, but I’d love to talk to those who came to camp. I asked if I could attend for the day.

She said I could come as a volunteer at the first camp of the season in early June about 50 minutes from Peoria in Lewistown and talk to campers. Yeah, I had heard of Lewistown, but not this Living Springs campgrounds she talked about. Volunteer? Sure, why not. I had experience working with folks in my service organization. I filled out the form.

After thanking Marylee for her assistance, I headed home and put that date on my calendar. Sure, I could give up some time in June to get a bunch of interviews. Then I’d keep moving on with my research.

Boy, was I ever wrong.

To be continued …


Sunday, December 22, 2013

Starting Christmas Eve

Starting Christmas Eve I will begin posting a series of articles written by Monica Vest Wheeler. As many of you know, Monica is very active with our stroke camp and with Alzheimers sufferers. She is also an accomplished writer with several books in publication. I am  personally excited to see what she has to say in the upcoming weeks. I would also like to get offerings and ideas from the rest of you that I can interleave with Monica's future articles.

This blog has been in operation since December 2011. There have been 110 articles posted in that time and a page view count of over 17,600.

As blog moderator I have run out of ideas as to what to post next. What would you like to see or see more of? You can respond here by Comment or go to our Contacts link and use one of the contact methods listed there to submit your ideas.

Thank you for your readership this far and I hope we can continue with some thought provoking and interesting articles.

Sunday, December 8, 2013

Speech & Language Recovery - Bungalow Software

There are very few products I would care to promote on this blog but this product is one I think is very beneficial to stroke survivors having problems with speech. 

We have demonstrated Bungalow's speech software at some of our camps and, Marylee, our camp Executive Director, speaks highly of it. She has used it with her husband John, who experienced a stroke in 2001. John started using several of the Bungalow modules daily in 2003 and Marylee saw dramatic improvement in his speech over the following two years. He went from barely speaking one word "sentences" to being able to carry on conversations in public.
I have mentioned this product in this blog before but I think it bears repeating.

I have taken the following off of the Bungalow web site to make it easy for you to access. However, if you wish to go directly to their site use this link:

Go to HOME PAGE for Bungalow Software - Speech & Language Rehabilitation

Speech & language recovery after stroke, aphasia or brain injury

Proven, effective speech therapy software. Use independently or with a speech therapist.

  Products    How it Works    Success Stories    Buy    Trials    Contact Us   Rehab Info 
Quote about speech therapy softwareBetween the speech therapists and the Bungalow Software, my husband John is doing so well that he is able to communicate his wants and needs by speech.  The speech therapists said that your aphasia therapy software has helped John progress to this level of speech."
Marie Ritchie, caregiver & wife
More testimonials>>
Quote about speech therapy softwareAphasia Tutor's multiple difficulty levels and feedback ensure success...The patient never walks away [from the program] discouraged."
Candace Gordon, Speech Pathologist
Former Clinic Supervisor, Portland State Speech and Science Program.

Quote about speech therapy softwareI teach at a University and love the concept of your company.  Therapy is so much more effective when clients can follow through with it at home.
"Bungalow is a wonderful addition and supplement to our field, and a wonderful resource for our clients."
Trina Harvey-Brown,
West Texas A&M University, Canyon, Texas

Use this therapist-designed speech-therapy software for  unlimited, independent speech & language practice using proven therapeutic techniques for faster rehabilitation. These programs have been trusted by over 20,000 stroke survivors and used in over 2,000 speech therapy clinics.

Faster Recovery With Therapy Software

Chart from clinical study demostrating the effectiveness of aphasia treatment softwareMany stroke and brain-injury survivors don’t get enough insurance provided therapy for a full recovery and can’t afford additional therapy.  Without ongoing therapy practice (such as with the Bungalow Software programs) patients often do not improve, and they may worsen, as shown in this graph of the results of aclinical study of aphasia software.Clinical studies show that software-based treatment can speed recovery enormously by providing the practice and repetition that researchers agree helps recovery. Bungalow Software has helped people up to 20 years after their brain-injury.

Less frustration. More effective therapy.

One major obstacle to recovery is challenging the patient without frustrating them. If it's too challenging they won't be able to finish the exercises and become frustrated. If it's not challenging enough they won't retain what they are learning and may become bored. The Bungalow programs do more than simply grade the patient and show the correct answer.  If the patient answers incorrectly, they usually get a hint (perhaps an explanation of what they did wrong, or the first letter of the answer). These hints, combined with many different skill levels (as many as 200) in each program allows patients to work a more challenging level without becoming frustrated. Studies have shown this leads to better retention of what they've learned.  Read more about how it works >>

If you need help figuring out which programs are most appropriate, contact us or use the onlineTherapy Advisor.  We're happy to help.

About Bungalow Software

Bungalow Software creates and sells software for Speech & Language therapy.  It was started in 1995 by Clay Nichols & Terri Brancewicz.  Most of the programs on this website were developed by Clay and Terri.  Terri, a speech pathologist, wanted programs for her patients to use independently at home for home speech therapy practice.  She turned to Clay who created the programs.  And then she asked for more.  And more.  Today, Bungalow serves thousands of customers around the world and has distributors in the USA, Europe, and Australia.  Read more >>Bungalow has been featured in the Stroke Connection magazine and on the national and regional newsand has presented seminars at the national ASHA Speech-Language Pathology conferences.

Contact Bungalow Software

Rehabilitation info from Bungalow by email.E-mail Bungalow with questions or comments.
We answer all emails, usually within 1 business day.
If you have not received an answer within one business day, please double check that you don't have any spam filters installed that would block our messages to you.
Speech & Stroke Rehabilitation catalog by mail.

Postal (mailing) address

Bungalow Software
2905 Wakefield Dr.
Blacksburg, VA 24060-8184
United States
Call for help finding the right programs.

Phone   (540) 951-0623
 Mon-Fri 10am to 6pm ET. Closed for all major US Holiday and all Postal Holidays.
 If you are only available after hours call or email us: we're happy to arrange an after hours callback.
Fax: (508) 526-0305 


Sunday, December 1, 2013

Once a Caregiver……and so Care Partners Resource was born.

I want to thank each and every one of you who voted for us on Facebook during the office makeover contest conducted by  RK Dixon a market leader when it comes to copiers, printers, IT services and pure drinking water systems. We didn't win the $15,000 office makeover prize but, as a result of your efforts, the camp is a winner of a much needed $1,000 printer.

The following was published in the October/November RRSC NewsLetter. I'm reproducing it here for those of you who are not getting our newsletter. Feel free to click on any of Lori's links. They lead to some very helpful web sites.

Once a Caregiver…
by Lori Cavallo, Volunteer

You know the old saying “once a … Always a … “ I have found that to be true of the Caregivers I have met since I was introduced to the term 12 years ago. My mother survived a stroke which left her paralyzed on her right side and an expressive aphasic. All terms I had not heard before July 20, 2001. But after caring for her for eight years they now flow from my tongue like any other caregiver who has taken an active role in the recovery of a loved one. The moment I got the call my life and vocabulary were forever changed.

Like many caregivers I have taken my experience and am trying to make a difference in the world. I built a free website for caregivers ( and I became certified to teach therapeutic
writing. I teach caregivers techniques to use their journal as a source of therapy and find solutions to their everyday caregiving challenges, with a heavy focus on writing a care plan that includes self-care. I have also become involved with National Stroke Association where I co-authored The Careliving Guide
( and helped start an online support group ( where caregivers help each other find resources or simply express their feelings so they are not isolated and alone.

Another way I try to make a difference is by volunteering at Stroke Camp. Marylee and John and everyone from Refresh & Retreat Stroke Camp are another example of taking the Stroke experience and turning it into a positive way to change the world. If you have gone to camp you know exactly what I mean and if you have not yet had the opportunity I hope to meet you at a camp next year.

Take your experience and make the world a better place. To read an article Lori wrote for StrokeSmart Magazine about camp, go to:


by Marylee Nunley, Executive Director

As our camp season is coming to an end for 2013, I can’t help but reflect on the wonderful time we’ve all had traveling the country enjoying time with stroke survivors, caregivers and volunteers. We have grown to the point that I can’t attend all the camps, even
though I wish I could. That is where our band of volunteers step in and execute camp weekends with professionalism, love, and dedication. It is a privilege for all of us to spend these weekends hearing stories of recovery, progress, accomplishments, and yes, frustrations and setbacks. Our campers have given me a rich knowledge of so many things that I otherwise wouldn’t know. It is my hope that everyone reading this, no matter what’s going on in your life, will take the time to focus on the good things and be thankful. And now read on and enjoy some things that our campers had to say this year!

"It was a very uplifting experience for us."

"What I liked most about Stroke Camp was how unselfish the 
volunteers and staff were to me!" 

"Such wonderful, nice, generous people to give of themselves to 
help stroke survivors. They are angels."

"We had a great time all weekend. We were so glad we went. Thank you so much for caring about us!"

"I thoroughly enjoyed the weekend-the staff and people were 
wonderful. It was an eye opening experience for me. Thank you to 
everyone who worked to put this together."

"This was my 3rd camp and the best yet. I honestly believe you 
could add the word “vital” to your list of adjectives. -- Thank you we had such a great time! It helped us look more easily into the future of our recovery."

"It was a wonderful, educational, entertaining and inspirational experience. Best weekend I have had post stroke."

"I liked the fact that everyone seemed happy to forget their 
problems and just have fun."

"It was extraordinary far reaching and beyond!"

"We had an outstanding time. We tell everybody about the camp. 
Will come back next year. Thanks so much."

"We didn’t know what to expect, but it was better than anticipated. It was a really great experience."

"Thank you-we had such a great time! It helped us look more easily into the future of our recovery."


Sunday, November 10, 2013

Think FAST

Here's a little reminder for you for the coming holidays. Holidays, especially Thanksgiving and Christmas, are the most stressful of the year. They are also the most indulgent involving food and beverages. Did you know that alcohol consumption is greater at Thanksgiving than it is New Years Eve or St. Patrick's Day? I know, hard to believe, but true! Stress, overeating, alcohol, shoveling snow, now there is an invitation to stroke or heart attack. 

Please remember the following test shown below as you celebrate the coming holidays. You could save a loved one or even a complete stranger. Wouldn't that make your day? 

If you see any of these symptoms, don't delay. There is nothing I can stress more than: DO NOT think these symptoms will go away and you'll be fine after all, and not go to the hospital. I have heard of a couple of instances lately, one in my own family, where the person had the symptoms, then felt them go away and thought they were ok only to have them come back the next day but even worse. Remember, when there is a blockage to your brain it is estimated that 1.6 million brain cells are dying each minute. 

I think, in some cases, the person is afraid of the medical bill if the symptoms aren't really a stroke and insurance won't cover the expenses. Please don't take that chance. If you see these symptoms, you're having a stroke. Get to the hospital. I don't want to hear of you lying in a hospital bed unable to talk or move and you thinking, "Well, at least I saved $1,000 by not going in yesterday."

To Identify Stroke Symptoms 

Remember This Simple Lifesaving Test


[F] Face          - Ask the person to smile. 
                     Does one side of their face droop?"

[A] Arms       - Ask the person to raise both arms.

                     Does one arm drift downward?"

[S] Speech Ask the person to repeat a
                     simple phrase.

                     Is their speech slurred or sound 
                     strange? Do they have trouble
                     understanding you?

[T] Time        - Call 911 immediately. 

                     Brain cells are dying quickly. It is
                     estimated that 1.6 million brain
                     cells die every minute after blood
                     flow is cut off.

Sunday, November 3, 2013

We Need a $15,000 Office Makeover

If you are on Facebook you most likely know about this already. For those of you who are not, here's what we have a chance to qualify for, and you can help us by doing two simple clicks.

Now in its 8th year, the Make My Non-Profit Run Better contest offers non-profit organizations the chance to win an office makeover that will help them run better. The Make My Non-Profit Run Better contest is organized by RK Dixon.

Click on the below icon and vote for Retreat & Refresh Stroke Camp by clicking the VOTE box located next to our name. We are listed at the bottom of the Blue Zone:

You can vote once every day until Nov 8th 5pm from any internet connected device and you can vote each day from as many different devices as you have access to. For instance, if you have an iPad, a desktop computer and a laptop computer you can vote from each one once a day. That give us a total vote count from you of 3. How great is that?

The top winning organization will receive an office technology makeover valued at up to $15,000. The first runner-up will receive a multi-function printer selected by RK Dixon and Premier valued at up to $10,000. The three remaining winners will receive a multi-function printer selected by RK Dixon and Premier valued at up to $5,000. In addition, we will award 10 runners up with printers valued at up to $1,000 each.

There is no purchase necessary to enter or participate. This contest is their way of thanking our organization for the work we and you do in the community.

We have already obtained enough votes to make it to the final round. There are now 25 finalists left in the contest and we are one of them. The 25 finalists will be narrowed down to 5 by Nov. 8, 2013 through this second round of online voting. The second round of online voting is taking place Nov. 1 at 8 a.m. – Nov. 8, 2013 at 5 p.m. RK Dixon and Premier will select a winner from those five finalists and announce the name of the winning organization on Nov. 20, 2013.

Prize: RK Dixon and Premier will assess the needs of the winning organization and then provide an office makeover valued at up to $15,000.The top winning organization will receive an office technology makeover valued at up to $15,000. The first runner-up will receive a multi-function printer selected by RK Dixon and Premier valued at up to $10,000. The three remaining winners will receive a multi-function printer selected by RK Dixon and Premier valued at up to $5,000. In addition, we will award 10 printers each valued at up to $1,000. No more than 25 percent of the $15,000 makeover may be allocated towards IT solutions.

Please help us and THANK YOU for your help.

Sunday, October 27, 2013

Our Camp Honored By The National Stroke Association As...

Outstanding Group 2013
Retreat & Refresh Stroke Camp

The Raising Awareness in Stroke Excellence (RAISE) Awards is a national awards program that annually recognizes individuals and groups for taking stroke awareness activities to new heights. This year they received over 200 nominations—the most entries to date. All these candidates represented wonderful happenings occurring across the country to increase stroke awareness.

The camp began with a vision of Marylee Nunley's, who was affected by stroke when her husband John became a stroke survivor in 2001. Recognizing that stroke affects not just the survivors but also those around them, Retreat & Refresh Stroke Camps provide a camping experience for stroke survivors and their caregivers. The camps take place at different locations throughout the U.S. including a cruise! Over a three- or four-day weekend, participants benefit from relaxation, educational programs, socialization and ongoing support— making new friends and enjoying new opportunities. What began as a one-time event in 2004, has grown to almost 20 camps nationwide. Since its beginning, they have served over 2,000 participants. 
It's great to know that we have attained national recognition for our efforts. Wouldn't it be great to win this again next year? We can with your help. If you would like to join us by volunteering to help at a camp or you know someone who might be interested please give us a call at: 
Toll Free: 866-688-5450; or 
Peoria, Il. local: 309-688-5450. 

If you would like to see what goes on at our camps and to learn what kind of help we need, look at the top right of your screen under the heading "See What Goes On At Camp" and see what happens each day during camp.

Sunday, October 20, 2013

Strokes affect our feline family members too

More from Monica Vest Wheeler. 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

After I poured the food into the bowl at 4 a.m. last Friday, I quickly stepped back, expecting to be bowled over by our cat, Clark, who could hear one morsel of food hitting ceramic from the far corners of our house and come running. I had learned the routine well after nearly 14 years.

I didn't hear the thundering of his paws. Instead, his sister, Lois, savored the rare opportunity to dine first and quietly as the proper little lady she was. Hmm … I walked into the living room where I saw Clark in his basket located near the front door to satisfy his insatiable curiosity on who was coming in and out. He looked up at me as he always did.

"What's wrong, Clark Bar?" He always responded to the name we had jokingly bestowed on him years earlier in homage to the candy. He was also our "spotted cow," with eight random black spots on a sea of white fur. It was then that I remembered hardly seeing him outside of his basket on Thursday as I had been rushing in and out to attend to the needs of my dad-in-law, Pepaw, whose Alzheimer's was a little scarier each day.

He protested as I lifted him out of his basket, but that wasn't unusual because he never was a holdable cat. I set him on the floor where he slowly walked forward. I studied him and noticed he was dragging his back legs or attempting to use them properly, but they weren't cooperating as they kept slipping. I carried him to his litter box in case he needed to go. He apparently didn't. He pulled himself out and started to scoot back to the living room, bypassing the food bowl.

I quickly left a phone message for the vet's office to call me first thing when they opened in another three or so hours. I then returned to the living room where Clark laid on his side on the floor. I sat down next to him and petted him. He didn't protest when I returned him gently to his basket.

I wondered … could it be a stroke?

I had certainly learned a lot about stroke in the couple years that I have been working on a book about coping with this leading adult disability. Yes, all the challenges that human survivors and their caregivers face, but could stroke have affected my feline baby, too?

The vet's staff called about 7, and I could get Clark in at 8. When I picked him up and set him in his traditional cardboard travel box, he looked around at the world with his usual curiosity during the five minute drive. I waited patiently as the vet took him out of the examining room to look at him closer.

When the vet returned, I could see it his face. Clark had "thrown" a clot and experienced something like a stroke affecting the back half of his body. I admitted that I had suspected the cause, and he nodded. I started to cry because I knew what was going to happen. I told the doctor how I had to go this day to look for the next phase of housing for my dad-in-law with Alzheimer's. And now my baby didn't have a good prognosis. His age, weight and numerous other factors were working against him as the vet gently explained the limited care options.

My heart and mind chose the right one. Keep him comfortable, I told the vet and his assistant as I needed to call my husband and son to visit our Clark Bar for the last time. I would return that afternoon to be there with him to release him from his pain.

Somehow my family understood me on the phone between my tears and loss of voice as I explained it was the best thing for our baby. They would each go to see him in the next few hours.

And then my sister-in-law and I went to look at facilities that could care for her dad's future needs. It wasn't easy or pretty to see what Alzheimer's had in store for Pepaw. Oh Lord, what a depressing day!

Late in the afternoon, my sister-in-law accompanied me as I said good-bye to my baby, Clark "Superman" Kent Wheeler. Free of the cage, he looked around the room and nuzzled noses with me and attempted to stand, but his back legs wouldn't cooperate. The vet told us that some symptoms had worsened during the day. We had made the right decision.

All of us laughed as I recounted the day when Clark became famous around the veterinary clinic as the "bat cat." About 11 years earlier, Clark had captured a bat that had gotten into our upstairs. When I discovered what the commotion was all about, Clark had the bat in his mouth and was shaking his head back and forth, beating that bat against the floor with each blow. I managed to get him to drop the bat, which I somehow bagged while freaking out at the same time.

Off to the vet we immediately went, the bat in a paper bag and Clark in his cage. They had to keep him until the bat could be tested for rabies. I wanted that to be done quickly, so the next day, I drove the bat head in a box to the testing center 45 minutes away so that Clark could be cleared to come back home sooner. No rabies, thank God! He was welcomed home as a hero for saving us from that bat!

But this day was the end of the earthly road for our hero Clark. I kissed him good-bye as he relaxed in eternal sleep. He was now free to run without pain and do all the things our beloved feline friends love in a special place in heaven.

Purr, baby, purr.

Written by Monica Vest Wheeler

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, October 13, 2013

Survivor Story - High School Senior McKenna Stec

The following story was taken from the Nebraska State Stroke Association web site ( While at the Lincoln stroke camp August 2013 I met Marcia Matthies, Outreach Coordinator for the Nebraska State Stroke Association. I first met her in 2011 at the same camp location. She gave me permission to reproduce on our blog any article they have on their site. Thank you Marcia. 

My name is McKenna Stec and I am a senior at Elkhorn South High School. 

I had a stroke before I was born so I had to figure out how to use my hand so it would be helpful in my life.  Walking was another challenge due to the stroke.  One thing that I remember since I was a baby, was wearing leg braces and hand braces. When I was six I had surgery done on my hand so it could be flexible and more useful.  One of the reasons I remember it is because the surgery was done on Halloween, I told everyone at school that I was going to be a patient for Halloween. The next day after the surgery,  my older sister Tori came in dressed up as a doctor. It completely brightened my day and she was my favorite doctor who took care of me.

Two years later I had to have another surgery, except this time it was on my foot.  When I walked, my foot would turn outward. In the hospital my dad stayed with me the whole time. I remember wanting to watch the movie Charlotte’s Web, but they couldn’t find it, so I decided to watch Mary Poppins.  It was in the middle of the night and dad was confused, he didn’t understand why I wanted to watch Mary Poppins. I remember thinking he was looking at me like I was crazy.  Every time Mary Poppins is on I remember that night.

I also recall after both surgeries life got easier, but it took time. Things such as opening marker tops and just figuring out how to do things one handed, like carrying groceries into the house or lifting boxes got better with time.  I learned that when hanging things up I had to put the hanger on my left arm to hold it still so I could hang the shirt on the hanger.  I have always had Occupational and Physical therapis’s who have helped me throughout and made sure both my hand and foot were flexible and working.  Even with all their help, I figured out a lot of strategies on my own just from my own experience and I’m still working. 

Therapy for my arm was more challenging compared to therapy for my foot.   One of the stretches I remember the most was for my arm.  My therapist Jenny held my wrist and I would have to flex it up and down.  Another activity that Jenny and I did was to practice bowling, but I had to use both hands.  I would do that with plastic cones and a plastic bowling ball and remember that it felt weird using both my hands. My favorite exercise though was going to the grocery store and pushing the cart making sure both hands were on the cart and I had to look straight ahead.  That is something that I still do to this day. 

My foot therapy made me focus and was challenging because of my balance.  I had to stand on a round surface that kept on moving.  I wanted to keep the pressure on my right foot but needed to concentrate on putting pressure on my left foot instead.  I had to focus straight ahead to keep my balance while the surface would move and almost tip me over.  I would start off with holding my therapist, Christy’s hand and then as I started to focus on a point straight ahead I would let go of her hand for as long as possible trying not to tip over and fall.    I still need to remember to pick up my foot while I look straight ahead.   I will drag my foot when I get tired and can still lose my focus.   I use a leg brace when needed so my foot won’t turn when I am walking long distances. 

My school memories begin when I was in kindergarten. I remember when I got to go on a class field trip to a farm and ride a horse in third grade.  Shortly after that I started hippo therapy which allowed me to ride horses. I was so excited!   I met new people and we had a float in the Nebraskaland Days Parade. Hippo therapy was fun because I did activities while riding that helped me keep my balance and stay flexible - things like throwing a big orange ball to Linda while on the back of Fancy or Whiskers, the two horses I rode.  We also would go and get the newspaper from the mailbox or put rings on a cone.  Fancy and Whiskers were great to ride while working on reaching and stretching.  

In 5th grade my family and I moved to Kentucky. It was hard at first since I was older and I didn’t know how people would react to me.  I started to make friends and most of them didn’t ask what happened to my hand, but some did.  They would ask things like, “Are you ok,”? Because they would think I was walking funny. I would say, “Yea, I’m fine,” and eventually mention to them that I had a stroke.    As I got to know people and gained trust I would explain to them what had happened to me. They asked thousands of questions but the main question was always, “can you move your fingers?”   This question was frustrating to answer all the time, but I would do my best to answer so they would know that I didn’t get hurt.

Some time later I started volunteering at a YMCA in the Childwatch Daycare area.  I liked it because it was fun and was a way to get out of the house for a few hours.   After I volunteered there the first two years it turned into a job by my freshman year of high school. The job was challenging, but I was able to do it well with some different strategies that I figured out on my own.   I remember when I was in 7th grade a teacher told the class how people can be different.  She said “…like McKenna, she looks like she needs help because of her hand, but really she has it under control.”  She told the class, “Unless she comes up to you or asks for help, she has it taken care of.”  So, I like to experience things on my own and if I can’t come up with a strategy then I will ask for help. 

Along the way I got involved with high school bowling.  I have been doing it since the 8th grade. I am on the high school bowling team and qualified for individual state championship competition both my junior and senior year.  I am looking forward to participating in bowling for Special Olympics. 

My plan for the future is to graduate from high school in 2013 and go to Metro Community College and learn how to be an administrative assistant.  I hope to become an OT/PT assistant one day in the future because of all my experience. 
I am looking forward to the future and I will never give up! 

Sunday, October 6, 2013

What Do You Remember About Your Stroke

The following story was taken from the Nebraska State Stroke Association web site ( While at the Lincoln stroke camp August 2013 I met Marcia Matthies, Outreach Coordinator for the Nebraska State Stroke Association. I first met her in 2011 at the same camp location. She gave me permission to reproduce on our blog any article they have on their site. Thank you Marcia. 

Keith Fickenscher Stroke Story


On Thursday, May 31, 2012 I had an appointment with a pulmonologist to determine why I was coughing up dark blood every morning. He ordered a CT scan which revealed what he thought was a pulmonary embolism in my left lung and an “unidentified mass” in my right lung. I was hospitalized and he ordered Coumadin and Lovenox to dissolve the PE. Friday night I had a relatively short episode of coughing up bright, red blood, which didn’t seem to be concerning, so the drugs were continued. Saturday night I experienced massive and sustained bleeding from one of my lungs.

I truly believed I would die. A CT scan revealed the bleeding was from the mass in my right lung. There was now no evidence of a pulmonary embolism in my left lung. The Pulmonologist tried twice to sample the mass which was in the lower right lobe, but the airway was blocked with sticky, clotted blood. So the decision was made to remove the mass surgically by removing the lower lobe. When I woke up in the ICU, the surgeon told me I was “very lucky” because the mass was “accumulated pneumonia” and there
“wasn’t a cancer cell in it.”

I went back to sleep in the Cardiac ICU in Bryan East following my
successful lung surgery (thoracotomy involving a wedge dissection of lower lobe of right lung). It was around 11:00 p.m. when a nurse woke me and asked me to brush my teeth. I could not reach the toothbrush on my overbed table. 
It seemed like the nurse was moving the table away from me. I asked her to put the brush in my left hand. She did and I could not control my left arm. When I extended it, the arm “floated” back and forth in a wide arc. I then became aware that the slurred speech I heard in the room was me. I told the nurse I thought I was having a stroke and she agreed. 

This is the second time I thought I might die. She called in the “BERT” Team and they confirmed our suspicions. They sent me for a CT scan and when I returned to ICU, my Thoracic Surgeon and a Neurologist were there. I asked for the clot buster shot but the neurologist said the CT scan did not show the clot. It was gone. He also said the shot would cause fatal internal bleeding related to my surgery that afternoon and he would not give me the

I expressed concern that the epidural I had opted for prior to surgery had caused the stroke. Suddenly the anesthesiologist appeared in my room and he informed me he had been administering epidurals for “30 years and an epidural had never caused a stroke.” The Thoracic Surgeon assured me he did nothing that would have caused the stroke. Prior to the surgery, they had doplared my legs and carotid arteries and performed an echo-gram of my heart. They saw no evidence of clots. The origin of the clot that caused my stroke remains unknown.


On Friday of the week following admission, I was transferred to Madonna for acute inpatient rehab. My anticipated discharge date was set for August9, which seemed like an eternity away! 

I made steady progress in rehab, going from where it took four people to help me take a single step to where I could walk 250 feet with a cane and 1 assist. I went from requiring a Vander-Lift to get me in and out of bed, to transferring to my wheelchair myself and toileting myself and showering myself.

Then one week before my scheduled discharge, I awoke with a severe pain in my chest. My blood pressure had dropped to 50/60. After a full day with no improvement I returned to the hospital where a CT scan revealed a suture in my chest wall ruptured and dumped 2700cc of blood into my right chest cavity.

This was the third time I thought I would die. Back to the hospital for a week to stop the bleeding, then three more weeks of inpatient rehab. I will never forget when I returned to my room at the rehab facility, an Aide removed the sign from above my bed that said I could transfer myself. She said, “This won’t apply now.” I was crushed.

I was dismissed from inpatient rehab on August 29 and went back to work full time on September 12, which was the 90th day after my stroke and my 65th birthday.

About a month later, on October 16th while sitting at my desk at 8:00 a.m., I had a stroke related seizure. I had no warning whatsoever. I woke up in the CT scanner with no idea how I had gotten there. This was the fourth time I realized how fragile life really is. Another week in the hospital and two weeks of skilled inpatient rehab at Lancaster Manor, after which I again returned to work full-time as Administrator of Lancaster Manor. I have
learned a hard lesson in how fast one’s world can turn upside down. After more than six decades of bullet proof health, my health is now my foremost challenge.


My biggest surprise has been how a stroke affects every single aspect of your life. A stroke is a hurdle between you and anything you want to do. I was surprised by how much I detested pureed food and honey thickened liquid.


My fears include having another seizure while I am driving … or having another stroke that affects my right (“good”) side. I also worry about falling, whether I will regain use of my left arm, and whether I will ever be able to walk without assistance. I also worry about the added burden my stroke has had on my wife. Prior to my stroke, I was left-handed. I have been surprised to learn how hard right-handed people struggle to do all the things that come easily for lefties!

I learned a lot as a resident of nursing homes and a hospital for five months. I learned there are four essentials to giving patients quality of life.

1. Good food … made from scratch by people who take pride in their work and who strive to “raise the bar.”

2. Engaging activities … especially on weekends.

3. Dedicated Rehab Therapists with excellent therapy equipment at their disposal.

4. A staff of direct caregivers and support people who understand how important they are to the residents in their building.

My new mission in life is to teach those four essentials to my colleagues in Nebraska’s nursing homes. My stroke stripped me of everything but life itself … so I am going to dedicate the rest of my life to advocate for quality in the lives of residents in Nebraska’s nursing homes, assisted living facilities and rehab hospitals.

Sunday, September 29, 2013

"I didn't sign up for this"

Another fine article written by 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

During four years of immersing myself in the topic of dementia and Alzheimer's, and writing and speaking about it, plus now serving as a caregiver, I've heard just about every scenario, crisis and triumph.

But there's one caregiver statement that really hits me now and then:

"I didn't sign up for this."

I was thinking about that one Sunday as I sweated in the July heat and watched my dad-in-law, Pepaw, fish. No, I didn't specifically sign up for this chore when I agreed to be his caregiver. I think it was in the fine print under "and all other duties as assigned."

There are a lot of things in life that I didn't sign up for. The first one that comes to mind is life itself. Nope, don't remember signing on any dotted line for this adventure, but I arrived and have tried to make the best of it.

I didn't sign up for my mom and dad, grandparents, aunts, uncles, cousins, etc. I got to know and love them and created my own place in the family. I learned to adjust and weave my way through a complex world that made no sense to a little girl.

I certainly didn't sign up for measles, chicken pox, bad tonsils, cuts that required stitches, and broken toes. If I had had any say, I would have requested summer weather year-round as a child so I could play outside every day.

I don't recall adding to my "want-to-do" list things like going to school, doing homework, being made fun of, fighting with so-called friends, and doing household chores. Those were the kind of things that came with this job of life.

I didn't sign up for rejection when the boy I had fallen for didn't like me in the same way in junior high, though he was quite amused by my lengthy and chatty letters. I didn't seek disappointment when I was not selected as a junior high drum major or my writing contest entries didn't win.

I did sign up for love when I met the right man and got married. However, I didn't sign up for arguments, financial headaches and the really hard work it takes to make a marriage work. But I've accepted those challenges along the way because I love this man.

I did sign up for motherhood when I gave birth to a robust boy. However, I must have missed all the fine print on the hours it demanded. Nowhere had I signed my name that I wanted to have more sleepless than restful nights those first couple of years. And I would have never agreed to chain myself to the pile of laundry a growing boy creates. But I waded through it and survived because I love my baby boy who's become a wonderful man.

I didn't sign up for the tragedy of war, high taxes, inept government and elected officials, potholes, road construction, mandatory insurance, and standing in line forever. I would have definitely voted down whoever created and implemented the phrase, "Life isn't fair."

I didn't sign up to be at my grandpa's side when he passed away, but I was there when it happened. I didn't sign up to attend the funerals of friends who died tragically, but I went to express my sympathy to their loved ones who had never asked for that kind of grief. I never signed up to lose my mom-in-law 10 years ago or my dear friend this year. I would have ripped and burned any paper that asked for my signature. I had signed up for love, but somebody made the rule that sometimes we lose the people we love. However, I wouldn't have missed the love for anything because the love really does last longer than the grief.

This spring, I signed up to be a caregiver for my father-in-law even though I knew Alzheimer's was slowly stealing his life. I didn't ask for the anger, accusations, threats and rudeness of recent weeks. I was not eagerly looking forward to having to help clean him when he soils himself, saving bushes from catching on fire when he flips his cigarettes into them, or having to hurry to his assisted living facility when they call about his erratic behavior.

I never asked for a broken heart, exhaustion, tears of frustration, loss of freedom and countless hours to do what I want to do, and being told, "You don't love me."

If caregivers saw every single thing that they'd have to do in caring for a loved with Alzheimer's or any catastrophic illness or injury, there would be few takers. Who asks for heartache, anger, pain and grief? I didn't, but I accept it because it's part of a higher calling and purpose in life, to show compassion to those we love … and to pray someone will show that same compassion when we need it in our final days.

No, I didn't sign up for "this," but no one is going to erase me now.

Written by Monica Vest Wheeler

Monica Vest Wheeler
Turning Empathy into Action
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Phone 1-309-682-8851
Phone toll-free 1-877-267-4640
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Peoria, IL 61650-0276