Sunday, April 29, 2012

The Season Has Begun and Our Thank Yous Have Started

by Chuck Jones

We are very excited to kick off the camp season! Chicago, Rockford and Denver campers and volunteers, if you haven't signed up for camp, please do so soon!
What a way to start the 2012 camp year! We had a great time at Camp Courageous in Monticello, IA, April 20-22, thanks to our incredible sponsors University of Iowa Hospitals and Clinics, St. Luke's Hospital and Mercy Medical Center. Here's our official camp photo. Looking good everybody! Camp photos will be posted shortly on the photo gallery section of our website Enjoy!

Our first camp of the season was at Camp Courageous in Eastern Iowa, April 20-22. Attendance was around 48 campers, including volunteers. The report I got was that it was a great success. This camp had a rock wall for climbing and a warm water pool for that low impact aerobics and general floating around. The theme for this year for all the camps is Cruisin to Stroke Camp, with all the fun things that happen on a cruise, complete with costumes, Captain's Dinner (served by a real chef, Chef Dennis), Stroke Camp Casino, Karaoke, balloon animals and even a stand-up comedian (unlucky volunteer in the wrong place at the wrong time?). This camp was sponsored by St. Lukes Hospital, Cedar Rapids, Mercy Medical Center, Cedar Rapids and University of Iowa Hospital and Clinics. THANK YOU Cedar Rapids!

The van was back at the "warehouse" in Peoria for unloading last Tuesday after the Iowa camp. Did you notice the quote marks around warehouse? That's because Marylee's mother, whom we all affectionately call Granny, has been letting us use her garage to store all our camp items. And they fill her garage to the brim. Someday, she'll want her garage back, I imagine.  THANK YOU Granny! You are so patient with us, and we love you very much!

One of our volunteers, Monica Vest Wheeler brought a set of very sturdy yet lightweight aluminum ramps we will be able to use for loading and unloading large containers into the camp van. THANK YOU Monica! We tested it out last Monday on a large, heavy container and saw that it will, indeed, save a few backs this season.

Please be sure to listen to Larry Schaer and Marylee Nunley on the "In The Neighborhood" radio show. It is a radio show that they were on a few months ago, but you can access the recording through the following link. Check it out!'ll have to endure a short commercial at the beginning but the interview is well worth the wait. This is an excellent interview and well worth the listen.

We have another addition to our internet presence now.  A new web site for our chimes Choir that is still in its infancy, so check it out from time to time for updates. Go to:  

What else do we have and coming up soon? Our next camp will be in Elmhurst, IL,  June 22-24 at the Elmhurst College dorms, sponsored by the Alexian Brothers Health System. And on this same weekend we also have a Rockford camp going on in Oregon, Ill. at the Lutheran Outdoor Ministry Center. It is being sponsored by OSF St. Anthony Medical Center, Swedish American Hospital, Rockford Health Systems, and Van Matre Healthsouth Rehab Hospital. 

The next scheduled ELSIE and her Megabrain exhibit will be at the Arizona Diamondbacks game in Phoenix, May 26th.  I originally thought we were going to have more MegaBrain exhibits at ball diamonds this year but it turns out some that I thought were going to be MegaBrains were "Strike Out Stroke" theme only. Keep up to date on ELSIE and her Mega Brain exhibits by following the "Calendar of Events" link at the left of your screen.

That's it til next week. Be safe and remember stroke survivors never quit!

 Please feel free to post any comments or questions by clicking on the red word Comment following this article. If you have any questions or comments about anything that you would like to share with us please feel free to do so on any of our articles. Don't worry about being off topic. Any question or comment is welcome on any of the article's comments section.

Random thoughts

by Chuck Jones

This blog has been up and running since Dec 20, 2011. In that four month period we have had over 1,500 page views.  Not so many comments though. I would like to thank those of you who have visited us and I hope you found some value in what we have offered so far.

I’m very interested in knowing what you readers think of this blog. Are we covering the kind of things you are interested in? Are there other stroke related topics that you would like to see posted here? 

This year we will be having a very busy schedule for our camps. If you look at the links on the left of your screen you will see one for “Stroke Camp Dates”. Follow that link and you’ll get the exact dates. So far we have 18 confirmed camps scheduled for 2012, with more on the way. We are expecting 25 before the year is out. We actually have four weekends where two camps will be going on simultaneously. The camps will start out in April in Iowa and progress through Illinois, Florida, Colorado, Missouri, Kentucky, Nebraska, Arizona, and end the year in October in Odessa, Texas. Yes, that’s a lot. We are also working to have camps for Omaha, Nebraska, Savannah, Georgia, Wilmington, North Carolina and Houston Texas.

Not only are we conducting these camps but we also started to display ELSIE and her MegaBrain this year around the country. You may have read about that in an earlier post on this blog. I hope you have. If you haven't, look to the right side of your screen and click on February within the Archives. A posting called "ELSIE and Her MegaBrain" will be found there. It seems major baseball teams are interested in our display so this year we are working to have displays at a San Diego Padres game, an Arizona Diamondbacks game and a Colorado Rockies game. We are getting requests from other teams as well but nothing is finalized for them, yet. We also have requests for a couple minor league games: Odessa, Texas Rockhounds and Ceder Rapids, Iowa Kernels. These and a couple fairs in Kentucky will keep the MegaBrain (and us) moving all year.

All-in-all it’s going to be a great year and I hope you are able to join us in at least one of these camps and exhibits.

 Please feel free to post any comments or questions by clicking on the red word Comment following this article. If you have any questions or comments about anything that you would like to share with us please feel free to do so on any of our articles. Don't worry about being off topic. Any question or comment is welcome on any of the article's comments section.

Sunday, April 15, 2012

Stroke Has 19 Definitions Part 2 of 2

Stroke Has 19 Definitions Part 2 of 2
by Chuck Hofvander

For nine days I was unaware of my condition, unaware that the world was still out there. Over the next few days I learned the details of what had happen to me. I had suffered a brain attack and my once normal, comfortable world for 52 years, had been changed for ever.

They fed me through a feeding tube in my stomach, no taste of steak, or potatoes or beer for me. I couldn’t walk, move my right arm, talk, read, or write. Slowly I had to relearn the things all of us take for granted. my normal life was suddenly un-normal.

I was an inpatient in a rehab hospital for five weeks and I continued rehab on an off to this day. I still have some trouble walking, reading, speaking, and writing and I still have little movement in my right arm. But I am alive and I am able to function.

During this entire process, my wife and sons did not let me rest when I was not “officially” in therapy. They stretched my arm, and legs. They read my favorite books, and played music. They did all they could do to stimulate me. My wife made the therapists provide a copy all the exercises and lessons they did with me.

Through hard work and determination I have recovered a great deal but I am still not the way I used to be. A friend of mine commented that I was goofy before the stroke and he didn’t notice much difference!

The worst part of my stroke was aphasia. Aphasia is an impairment of the ability to communicate, not an impairment of intellect. Aphasia can range from just missing a word now and then to the inability to communicate at all. Aphasia is not well known, but there are 100,000 new aphasia survivors EACH YEAR in the U.S. alone. Some like Dick Clark are well known but there are many others who are hidden from view because of their inability to communicate.

Through years of hard work and perseverance I improved a great deal. Yet, I’m not nearly back to the way I was. I can “think it” but have difficulty “saying it’ or “writing it”. My voice and writing seem to have wills of their own. A clear thought comes into my mind but when I try to convert it to speech it gets garbled up.

As for reading, challenging is too mild a term. Before the brain Attack I used to read three books at one time, now I can barely read one book a month.

I have problems with reading the written words. I insert words, omit words, read the same line several times, and sometimes words are unintelligible.

My sons are only mildly surprised by my writing, reading, and speaking skills. Repeated MRI’s of the left side of my brain (the side that controls reading and speech) shows that it’s essentially missing. I told this to my sons and they looked surprised. I asked them what’s wrong and they said “We didn’t think you had a brain before your stroke”

As for physical and occupational therapy I have to thank all of my therapists who worked with me. They were all supportive but and at the same time they didn’t take nonsense from me. I apply to this day the exercises I learned from them. They re-taught me the principles of walking, dressing, eating, climbing stairs, all activities of daily living. They are the unknown heroes of the medical world.

It is also important to keep your mind active as well. To that end,
• I joined a library book club
• I write for several stroke related publications
• I do crossword puzzles
• And I write stories about my life

And now partially due to the therapist’s efforts, my family, especially my patient and loving wife, and others, I have finally adjusted to my new life.

I was recently visited by two old friends. They were my colleagues before my stroke. We were discussing our lives, the normality in home life. Both friends were unsatisfied with their job lives, complaining how their work hadn't changed in years and has become unsatisfying. They were complaining about their normal lives and I could only think how fortunate they were to have such normal, complain-able lives.

But their visit made me think of what a normal life really is? After all, what is "Normal?"

Then I got to thinking about my previous "normal" life before the brain attack. For years, when I worked, I got up regularly at five o’clock in the morning to start my day and the day generally ended at seven at night when I sat down and watched TV. When I compared that life to my current one, I realized that in some ways, not much had really changed.

I mean, I still get up early every morning, out of bed by six AM and I spend my day writing, reading, sleeping, talking, biking, exercising, and eating and it’s all therapy... OK, maybe not the eating part, but at least I'm not being fed through a tube in stomach, like when I was to the hospital. And I still watch television at night. So overall, life is still good. Still normal as it was in many ways.

Sure, I regret the fact that I’m partially disabled, that I can’t do all the things that I used to, but I’ve adjusted to my “new normal life”.

Granted, I do have to concentrate on every word that I speak. Watch every step I take. Concentrate every movement that my body makes. In some respects, I had to make similar conscious efforts in my previous normal life. So, I’ve come accept that I have to do more of it in my new normal life.

Yes, I AM different now, but I’m still normal. It’s a just different kind of normal and I’m OK with that. My wife and children have accepted that fact because that’s who I am.I am as normal as I can be, a new kind of normal.

I am adapting too my “new normal life”. I’ve come to realize that after the stroke I wasted time regretting my “old normal life” and feeling sorry for myself. The grieving and letting go of my old life as I knew it, was necessary. With the help of dear friends and especially my loving and caring family, I finally realized it’s not a onetime process. It’s a normal ongoing process that never ends. The same as it in everyone's normal life.

And as life has it's way of challenging us over and over again, well.... Nine months after the stroke I had a seizure. It was late in the day, around five o’clock, and I lost control of my body. My wife called the ambulance and I was taken to the Emergency Room at Northwest Community Hospital. Again. By then the seizure had already begun to subside and I had my wits about me again.

The ER doctor came into and looked my admittance information, there was look of disbelieve shrouding his face.

"Haven't I treated you before," the doctor asked.

My wife said that he had.

He was the ER doctor that had been the first one to see me when I had the brain attack. He was the one who gave my wife no hope. 

I will not deny that I miss my old normal life, but I’m determined to live my “new normal life” to its fullest. You never can recover fully from brain attack, but you can adjust to life to a new normality that makes your life still worth living.

As a famous author once said; "The abundant life does not come to those who have had a lot of obstacles removed from their path by others. It develops from within and is rooted in strong mental and moral fiber."

That author gave us some some very good advice. Advice to truly live by.

Please feel free to post any comments or questions by clicking on the red word Comment following this article. If you have any questions or comments about anything that you would like to share with us please feel free to do so on any of our articles. Don't worry about being off topic. Any question or comment is welcome on any of the article's comments section.

Sunday, April 8, 2012

Stroke Has 19 Definitions Part 1 of 2

This is a two part article written by our buddy Chuck Hofvander. Part 2 will run next week

Stroke Has 19 Definitions Part 1 of 2
by Chuck Hofvander
Stroke has 19 definitions. It can mean a stroke of good luck, a rowing style, a caressing movement, etc and all mean something positive. Only one meaning has a negative meaning, sudden blockage or rupture of a blood vessel in the brain resulting in loss of consciousness, partial loss of movement, or loss of speech.
I prefer to use attack, to be more specific Brain Attack. Brain Attack is defined as: To harm using extreme, destructive, or uncontrollable force to the controlling center of the nervous system in humans. The brain is the center of thought and emotions, and bodily activities.
Thank you for taking the time to listen to me today, and you’ll really have to listen. I’m sure you’d rather be doing something else but hopefully something you hear today will help you, a relative or a friend someday. Here’s what I’ll attempt to cover:
·        Scare you and make you aware to the dangers of stroke
·        Tell you some facts about stroke
·        How stroke can affect you and others
·        How it affected me and others

Brain Attack/stroke is not a well understood yet it is:

• the number one cause of disability in the US

Everybody should know the warning signs.

Some facts:
• Three million American’s are currently permanently disabled from stroke
• More than half a million people in the US have a stroke each year

A stroke does not discriminate when choosing its victims. A stroke will strike people of all ages, sex and race. No one is immune
In fact, on average, every 40 seconds someone in the United States suffers a stroke.
The medical cost to handle stroke victims in the United Sates alone, exceeds $30 billion. Yes. 30 billion dollars.
As is the case in most medical issues, the average public remains unaware, until it happens to them and by then, it is too late. Recognizing the symptoms and acting FAST, can save a life. And that life you save, could be your own.
A simple acronym for understanding the symptoms of a stroke is FAST. Convenient, since acting FAST is important to minimizing damage and saving lives.
• F= Face – Smile. Does one side of the face droop?
• A= Arm - Try to raise your arms. Does one drift downward?
• S= Speech - Are your words slurred? Can you repeat any sentence correctly?
• T= Time - If you have any of these symptoms call 911. Time is of the essence.

It’s important to act FAST because brain cells are dying by the minute. By acting FAST up to 80% of Brain Attacks can minimize the damage.

Stroke is not a good word to describe the devastating effects it has on one's life. A brain attack happens fast and sometimes without warning.
I had lived my life never really knowing a stroke was. Or how it affects people, especially the families of stroke victims. Boy was I in for a surprise.
I was 52 years old when I had my brain attack. It was on March 21, 2004. My wife was attending a bridal shower and my two sons were both working. All in all, I had been living a simple normal life.

I was home alone on that leisurely Sunday afternoon. In my basement, doing, of all things, my routine exercises. I began to feel a little light headed and decided to go upstairs. The symptoms suddenly began to worsen and I felt like I was going to pass out. The last thing I remember was going into the family room. I learned later, that there was where my wife found me when she returned home. The attack lasted maybe five minutes. Five little minutes. Two and half hours later, my wife found me in our family family, staring at death's gate.
I don't wish to brag, but, in many ways, I have been a very fortunate man. I mean, I've always been healthy and very happy in my personal life. I have wonderful home in the suburbs that I share with my lovely wife and together, we've made a home for two wonderful boys. I have also been fortunate in my professional life. Starting as a clerk, I worked my way up and succeeded in becoming a corporate executive. I've always eaten well, drank moderately, and I exercised regularly, four to five a week.
Who could have imagined that five minutes little minutes were to change 52 years of life.
When I was brought into the Emergency Room at the Northwest Community Hospital, the attending doctor gave my wife little, if any hope, for my survival. The neurosurgeon advised my family, that if she didn’t operate in the next 30 minutes, I would, in all likelihood, die!

Imagine your loved ones being told that surgery held no guarantees. That even if the surgeon operated, you might still end up in a coma for the rest of your life, or possibly, (pause), die on the table.

The priest in attendance was contacted, (pause), and he administered MY last rights.
Brad, my 20 year old son, was beside himself, lost in a daze of unimaginable disbelief. Mathew, my 17 year old, broke down in tears, falling to the floor, he begged God - “please don’t let Dad die”.

My wife, Liz, did the only thing she could do. She granted surgeon permission to operate, and pleaded with the doctor to do her best.
When they opened my skull, they found hemorrhaging - a blood vessel had bursts inside my brain. The blood had collected in one area, creating a swelling that amassed to the size of baseball. With limited room in the human skull, it pressed my brain against one side on skull.
After the surgery, I spent five days in a coma. For my family, it seemed that the doctor's predictions were right.

On my son Brian's 21st birthday, nine days after my brain attack, nine days after the uncertain surgery, nine days after I was given my last rights - I awoke.

Brain said it was the best birthday present he had ever received. I was gratefully touched when hearing that.

NOTE: From the blog moderator - If you found this article, Part 1,  interesting, Part 2 will be posted here 4/16/2012.

Please feel free to post any comments or questions by clicking on the red word Comment following this article. If you have any questions or comments about anything that you would like to share with us please feel free to do so on any of our articles. Don't worry about being off topic. Any question or comment is welcome on any of the article's comments section.

Sunday, April 1, 2012

Amazing Story of an 18 Year Old Stroke Survivor

by Chuck Jones

I obtained the following photo and article excerpts from The Dagger written by sports writer Jeff Eisenberg, a College Basketball blogger for Yahoo! Sports.  The Dagger is a Yahoo Sports blog site:

On March 26, 2009, Weissman suffered a stroke that initially paralyzed the entire left side of his body and left him unable to walk for two weeks. One of his primary motivations during rehab the past three years has been to return to the Gettysburg basketball program and experience the joy of playing in a game again.

He refused to give up on his dream when doctors warned him he might never regain the full use of the left side of his body. Or when he regularly suffered from seizures as a result of the damage to his brain. Or when he trailed behind his friends going to and from class because he couldn't walk at the same speed as them.

"I looked at my stroke as a challenge," Weissman said. "It was almost like I was competing against the stroke and I wasn't going to let it beat me. Ever since it happened, I've been working at not letting the stroke beat me. The reason I'm doing so well is because I'm working a lot harder than the stroke is."
Weissman experienced no symptoms or warning signs that suggested he was at risk of a stroke either in high school or college, so he had no reason to be wary when he didn't feel well during a routine weightlifting session soon after his freshman season at Gettysburg.

Despite a throbbing headache worse than any he'd ever experienced, he kept doing bench presses and bicep curls as though nothing was wrong. Only after his left hand stopped working did Weissman tell teammate Brendan Trelease he thought he should probably stop.

When Trelease took Weissman out of the weight room to get a drink of water, Weissman had to sit against the wall after he began swaying back and forth and feeling dizzy. It was then that Trelease decided he needed to get Weissman to the training room as quickly as possible.

"About halfway to the training room, I started stumbling because my left leg started dying," Weissman recalled. "One of the last completely clear visions I have that I'll never be able to forget was coming through the training room doors. My head was completely down because I didn't have the strength to lift it up. I looked down at my left leg and saw it dragging behind me, just completely dead. That's an image I'll never forget."

Once Weissman burst through the doors of the training room, it didn't take long for first-year athletic trainer Katie Whaley to realize this was more than a typical case of an athlete getting dizzy after overexerting himself during a workout.

"At that point I knew he was having a stroke, but I couldn't believe it," Whaley said. "You don't think an 18-year-old is having a stroke. That's not something your mind goes straight to."

For the rest of this amazing story and included comments go to:
 Act of sportsmanship highlights player’s return from a stroke

 Please feel free to post any comments or questions by clicking on the red word Comment following this article. If you have any questions or comments about anything that you would like to share with us please feel free to do so on any of our articles. Don't worry about being off topic. Any question or comment is welcome on any of the article's comments section.