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. 
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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.
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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:  http://monicavestwheeler.blogspot.com/  

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: http://www.monicavestwheeler.com/

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.
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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 www.alzhelpbook.com
Blog http://monicavestwheeler.blogspot.com/
Turning Empathy into Action
Find me now on Facebook
And on Twitter http://twitter.com/alzheimersbook
Phone 1-309-682-8851
Phone toll-free 1-877-267-4640
Fax toll-free 1-877-636-0634
info@copeandsurvive.com
P.O. Box 276
Peoria, IL 61650-0276

Survivor Story - High School Senior McKenna Stec

The following story was taken from the Nebraska State Stroke Association web site (www.nebraskastroke.org). 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! 
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What Do You Remember About Your Stroke

The following story was taken from the Nebraska State Stroke Association web site (www.nebraskastroke.org). 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

WHAT DO YOU REMEMBER ABOUT YOUR STROKE FROM
BEGINNING UNTIL NOW?

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
shot.

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.

HOW LONG WERE YOU IN REHAB?

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.

WHAT WERE YOUR BIGGEST SUPRISES WITH YOUR STROKE
EXPERIENCE?

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.

WHAT WERE YOUR BIGGEST CONCERNS OR FEARS RELATED
TO YOUR STROKE EXPERIENCE?

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!

ADDITIONAL COMMENTS:
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.

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