Back from Vacation

by Chuck Jones

I'm sure you didn't even know I was gone but I'm back off vacation now. Our newest member of the staff, Lauren, has been doing a terrific job of updating and monitoring the blog for me while I was out cavorting the past month across the western U.S., through Canada, and into Alaska on my motorcycle. North America is an awesome continent and some of the most absolute, fantastic, jaw dropping scenery can be experienced traveling north west.

Last week we loaded up the van for a camp in Denver, Colorado July 27-29. This same weekend we had a camp for Rockford, Illinois.  The Denver camp which is actually in Allenspark, Co. at Highlands Retreat Center, is sponsored by Centura Health which has multiple hospitals.  Most of the campers and volunteers came from the Denver area. The Rockford camp is sponsored by the four hospitals in the Rockford area.  This camp is held at Lutheran Outdoor Ministries Center in Oregon, IL. We supply three, four, sometimes five Peoria area staff and volunteers as camp and program directors, and various other administrative duties but the rest come from the sponsor's area. As you can see we rely very heavily on sponsor volunteers to make these camps successful. I have been helping along with these volunteers for eight years and I can tell you you won't find better, more enthusiastic, helpful people anywhere. We could not succeed without them.   

Coming up next we have a MEGA Brain exhibit at the Coral Ridge Mall in Coralville, Iowa August 3 and a four day family focus stroke camp at the Living springs camp ground near Lewistown, Illinois.  

Next week and in the near future I'll be posting some more short stories written by Chuck Hofvander.  Chuck is a stroke survivor and fellow camper. This time he is writing some short stories about those who come to camp. Not just survivors and care givers but staff, music therapists, etc. They are being published on this blog with permission from those people he is writing about.

If there is any topic you'd like to see covered on this blog please let me know. I'm always looking for new material no matter what the subject. You can contact me at cjrley at gmail dot com (I hope you know how to put this together correctly). I have to spell that all out, you see, to make it difficult for the auto-troll hacking programs to get a hold of it and spam me to oblivion.

The Real Rehab Story by Marylee Nunley

by Marylee Nunley

In September 2001 on a sunny Sunday afternoon my husband John collapsed from a stroke.  To this day, I do not know how I recognized it as a stroke, but I calmly said to him "I think you've had a stroke, I'm going to call 911".  We were in the E.R. within 20 minutes.  The first few weeks were kind of a blur.  Confusion, agitation, speech problems, vision problems, right-sided weakness, no food until they could be sure he could swallow…………..what’s with that!  This intelligent, warm-hearted man reminded me of a frightened little wild-eyed child and could hardly speak an intelligible word.  I was thrilled on day three when he got angry with a nurse and said "this is bullshit", only to be told that it was an "involuntary response" and he hadn’t regained his speech.  I still didn’t know he was going to have to learn to speak again, word by word and that he wouldn’t just wake up one day and be able to talk.

It wasn't until a few weeks passed that I began to recognize the seriousness of his injury.  I kept thinking he’d just get better and be alright.  Then, rehab which gave me such a sense of progress.  After numerous evaluations of functioning, the team decides the patient’s needs.  As his caregiver and head cheerleader, I am so excited that we are getting down to business and on a path to recovery so we can resume our normal life.  Speech therapy is going to help him with his expressive and receptive aphasia.  Let’s get going. The first speech therapy session will always be vivid in my memory.  I accompany my dear husband to a little room where Jennifer, his inpatient speech therapist, sits him up to a table.  She brings out some simple pictures or common objects.  First is a picture of a table.  John responds with some sound that wasn’t at all like a word and then kind of smiled as if to say “was that right”.  Jennifer calmly said “table” and John obediently babbled some non-word back.  As we went through that first set of cards, there were only a few objects that John could recognize and speak a word close enough that we knew what he meant. I remember feeling ever so embarrassed that he couldn’t repeat the words.  I wanted Jennifer to know that he was intelligent and not some dummy.  Even after a number of speech therapy sessions, I’m still in fantasy land thinking, “Well, this will probably take a few more days”. 

After speech, the next part of the day involves physical therapy.  Here is where they begin teaching John how to walk again.  He had significant sensory deficiency on his right side, and couldn’t feel his right arm or leg.  They taught him to walk like they would an amputee, to watch his leg because he couldn’t feel it touch the floor.  John was strong and determined and always accomplished more than was expected. Once again, I am so proud and in some part of my mind, thinking, “This will probably take a few days”.  Next we head to occupational therapy.  This is where they begin to help with “life skills”.  They start by having him take little pegs out of a pegboard and drop them in a little bucket.  I’m not sure what life skill this is, but it’s o.k., because “this, too will probably only take a few days”. 

What life skills really means to a stroke survivor is learning again which utensil to use when eating, how to shave, shower, and various other routine day-to-day activities. They are things that you and I do without even thinking.  In fact we don’t even know they require brain functioning to complete.  John would pick up his knife and try to tackle the soup or pudding.  He didn’t even recognize why the knife didn’t work.  I would discreetly hand him the spoon and say, “this is your spoon, and it will work better”.  He often would look at me and I knew he wanted to try and say “spoon” so I would hold it up, say “spoon” and wait for his response which might be “spoon”, or maybe “poon”, or maybe “cup”, or some other mixture of sounds.  

 Life skills also involve self-care.  John’s first shower upon returning home was quite the challenge.  I had set everything up for him and was standing nearby.  He stepped in the shower and stood there.  He knew how to test the water with his good hand (they taught him that in life skills) so he started the shower and then just stood there.  As I watched, I recognized he seemed puzzled, so I cheerfully directed him to the soap.  He wasn’t sure what I meant, so I lathered up the washcloth and began to wash him.  He understood and took over, whew, that’s better.  Next I hand him the shampoo.  I got the same puzzled stare before so I said “shampoo”.  Same blank look, so I took his hand and poured a little shampoo into it…..there’s that blank look again.  It wasn’t until I physically took his hand and placed it on his head and started the washing motion that he understood what we were trying to do.   It was several weeks of my assisting him with the shower before he could accomplish this task alone.  This same struggle came with each life skill.  Brushing teeth, shaving, eating, dressing, combing hair, all become major challenges.  By this time, I’m finally realistic enough to now say “this may take a few weeks” rather than a few days.

The story could go on and on with rich entertaining stories of triumphs and challenges, successes and failures, laughter and tears.  What I know for sure is that for a stroke survivor and their caregiver, it doesn’t “take a few days, weeks, or months”, it takes a lifetime.  John is a man who has worked amazingly hard to get better.  He has gained the skills to help around the house and now he is driving, mowing, and interacting weekly with grandchildren. He feels like God has called him to help others who have suffered disabilities which we accomplish with our camps.  His speech is still evolving and he can’t always retrieve the word he’s searching for, but on a good day when he is in command of the conversation, you would hardly know he’s had a stroke.  

So, this is a story of stroke survival.  It all starts with rehab but rehab never really ends.  It doesn’t just “take a few days” it takes the rest of your life.  It requires drive and determination, patience and understanding.  It includes tears, anger, frustration, confusion, and despair.  I wouldn’t have wished this on my worst enemy, but now, wouldn’t trade the experience for the world.

Stroke………rehab………life goes on.  It is forever changed, but it can be good.

Jan's Journal Part 3 - Stroke Risk Factors

Jan Jahnel RN, CNRN is the Stroke Nurse Coordinator for the INI Stroke Center and INI Stroke Network at OSF Saint Francis Medical Center in Peoria, Illinois. Jan has 14 years of neuroscience nursing experience with the last five years focusing on stroke processes and care. Her commitment and dedication has been an important part of stroke camp. She works very closely with Retreat and Refresh Stroke Camp, attending many weekend camps, helping with some of our fund raisers, and providing us with technical knowledge about strokes. 

This is an article she wrote during one of our fund raisers. Yes, she is a great multi-tasker.

------- 

80% of strokes are preventable. Understanding your risk and managing them can reduce your risk of stroke. There are two types of risk factors: uncontrollable and controllable.

Uncontrollable - uncontrollable risk factors are...ones you have no control over, like:  age, sex, race, heredity, and prior history of heart attack or stroke. Since these put all of us at risk for stroke without any control it is important that we know and pay attention to the controllable ones.

Controllable - controllable risks are high blood pressure, diabetes, high cholesterol, atrial fibrillation, smoking, obesity, and physical in-activity.  These can be controlled with medical management, medications and lifestyle changes.

Know your risks, talk to your doctor about your personal risk factors and make changes necessary to prevent a stroke. It is never too early and never too late to start.

---EDITOR'S Note:

I'll bet you wondering what Atrial Fibrillation is. Here is Wikipedia's definition:

Atrial fibrillation 

From Wikipedia, the free encyclopedia

Atrial fibrillation (AF or A-fib) is the most common cardiac arrhythmia (irregular heart beat). It may cause no symptoms, but it is often associated with palpitations, fainting, chest pain, or congestive heart failure. AF increases the risk of stroke; the degree of stroke risk can be up to seven times that of the average population, depending on the presence of additional risk factors (such as high blood pressure). It may be identified clinically when taking a pulse, and the presence of AF can be confirmed with an electrocardiogram (ECG or EKG) which demonstrates the absence of P waves together with an irregular ventricular rate...

 Atrial fibrillation may be treated with medications to either slow the heart rate to a normal range ("rate control") or revert the heart rhythm back to normal ("rhythm control"). Synchronized electrical cardioversion can be used to convert AF to a normal heart rhythm. Surgical and catheter-based therapies may be used to prevent recurrence of AF in certain individuals. People with AF often take anticoagulants such as warfarin to protect them from stroke, depending on the calculated risk. The prevalence of AF in a population increases with age, with 8% of people over 80 having AF. Chronic AF leads to a small increase in the risk of death. A third of all strokes are caused by AF.

If you have any questions or answers we'd be happy to hear from you.

What? Cows on an Airplane

 Chuck Hofvander is a stroke survivor and fellow camper. He has written many essays since his stroke and here is a more humorous one.  

What? Cows on an Airplane
by Chuck Hofvander

Maybe I’ve got a thing about cows! Just let me think. I rode a calf in Iowa: or at least tried to, cows chased me in South Dakota and my mistaking a bull for a cow: they look alike don’t they? 

Wait a minute maybe Howie does too.

I was on a trip to San Jose California with Howie, my boss. The Hyatt hotel had a mural of Herford cows grazing in the field in the dining room. When I say mural it means that the cows were not just large but very large, not just very large but staring at the patrons.  Cow’s in the dining whatever genius thought of that? 

The first thought that came into my mind was milk, hamburger and then to steak’s. I looked around the dining room and didn’t find other farm animals. What about chickens, pigs, lamb, and what about those that couldn’t drink milk. Why were they excluded?

One night we had dinner among the cows and Howie went to the bathroom and I remained at the table. Minutes passed then I heard (herd) a faint mooing sound. Is the dining room wired for sound?  Then the mooing began to get louder. Howie returned to the table and the mooing stopped. Was it Howie? He always up to something but I didn’t ask him.  

We ended our trip and on our way back to Chicago Howie and I were on a full 767 flight.  The plane landed and the pilot came on and said, just as usual “please remain in your seats until we’re at the gate”. That was a signal to everyone to jump out of their seats and crowd the aisles while the plane was still moving. 

Howie and I remained seated and then I heard a cow mooing. Then I heard, what must have been a rancher saying “The fastest way to move Cattle is slowly”. Everyone looked startled and looked around. Cows in the passenger compartment of an airplane? Why hadn’t someone seen the cow? The flight attendant’s must have seen the cow and the rancher as they served coffee?  I thought it must be Howie. 

The cow sounded frantic, like it was on way to the slaughter house and then I heard “Get along little doggie”! What?  It must be Howie.  How could a cow and a rancher get thru a crowed airport without someone asking them what they were doing, how could they get thru security, wouldn’t the person at the check-in counter stop the cow and the rancher, and finally the flight attendant at the entrance stop them as they entered the plane? Were we to flight to Chicago or Abilene Texas? 

It was Howie! We were seated in the center isle and Howie was crouched over making the mooing sounds and saying “Never kick a cow patty on a hot day” and “It rained like a cow peeing on a flat rock”.  Howie straightened up but everyone who came near our seats looked at us.

All this taught me several lessons. First I’ve got a thing about cows, second I’m suspicious of other farm beast’s, third always rise up from your seats when the airplanes landing; to avoid cows and whenever possible travel with Howie. 

 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.

Strike Out Stroke

After you read this posting go here: http://rrscb.blogspot.com/2013/03/strike-out-stroke-may-23-2013.html
to see this year's article about our upcoming May 23, 2013 Strike Out Stroke (TM) event, then go here to see the actual Strike Out Stroke (TM) event: http://rrscb.blogspot.com/2013/06/strike-out-stroke-peoria-chiefs.html

On Sunday, June 10, Retreat & Refresh Stroke Camp held its fourth annual Strike Out Stroke event with the Peoria Chiefs.  We had perfect weather and a great turnout of survivors, caregivers, friends, and family.  We hung the 68 winning posters from the 5th grade education poster contest on a fence at the game for people to look at as they walked around the ballpark.  Before the game, Marylee Nunley, Executive Director of Retreat & Refresh Stroke Camp was interviewed on the field.  She educated those in attendance on the warning signs and symptoms of stroke.

Lindsay Kwok, the grand prize winner of the poster contest, flew in on the Life Flight helicopter, landed in centerfield, and then got to throw out the first pitch of the game.  It was very exciting!

Just minutes before the game started, nine stroke survivors took to the field with the position players for the Chiefs as part of the "Dream Team" and were acknowledged as being stroke survivors. 

The game went off without a hitch, and the Chiefs ended up with a win!

You will be seeing a lot more about Strike Out Stroke in the future. We are working on ways to expand the theme throughout the country. Please watch for developments in 2013.

Jan's Journal Part 2 - Stroke Diagnosis and Treatment

by Jan Jahnel

Jan Jahnel RN, CNRN is the Stroke Nurse Coordinator for the INI Stroke Center and INI Stroke Network at OSF Saint Francis Medical Center in Peoria, Illinois. Jan has 14 years of neuroscience nursing experience with the last five years focusing on stroke processes and care. Her commitment and dedication has been an important part of Stroke Camp. She works very closely with Retreat and Refresh Stroke Camp, attending many weekend camps, helping with some of our fund raisers, and providing us with technical knowledge about strokes. 

                                       Stroke Diagnosis

The diagnosis we're covering here is that which comes after the stroke survivor has entered the hospital. I am assuming you already know the F.A.S.T. and the "Give Me 5" method from Part 1 for telling if someone is experiencing a stroke and that you have rushed immediately to the hospital within three hours of the first symptom. 

Once in the hospital, it is critical for the medical personnel on site to diagnose the stroke in progress. Timing is very important. 

                     Time lost is brain lost!! 

That is why timing is so important. Time lost is brain lost.  It is important to quickly recognize, diagnose and treat the stroke while it is happening.

                       Types of Diagnosis

* CT-or Cat scan is a key test. It is usually the first test given to
   patients with stroke symptoms. Determines whether there is
   bleeding in the brain. 

* Angiography- groin area puncture with dye injected into the 
   vessels. This gives a picture of the blood flow to the brain. It will 
    show size, location of blockage, aneurysms and malformed    
    blood vessels.

* Carotid doppler- this is an ultrasound of the neck vessels to 
   assess for narrowing of the neck vessels. 

* Echocardiogram- ultrasound of the heart assessing for
   problems with the heart or poor pumping action. 

* MRI –like the cat scan it produces an image of the brain. This 
   image is used to diagnose small deep injuries. 

* Lab work-up – This helps determine other possible causes for 
   ischemic strokes. 


                                   Acute Stroke Treatment

MERCI device- FDA approved device: catheter with a small corkscrew device that grabs the clot. The Merci device is a catheter that is threaded up through the vessel to the clot.  Then a small corkscrew device is threaded through the catheter and into the blood clot.  The corkscrew device and the clot are then pulled back into the catheter and out of the blood stream

Penumbra device- FDA approved device: a catheter with a separator and a vacuum that separates the clot into small pieces that are then vacuumed into the catheter. 

Intra-arterial t-PA: t-PA is injected directly at the site of the clot. This also involves taking the person to have an angiography.  The catheter is threaded up to the clot site and the medicine is injected directly at the clot.

The only FDA approved acute drug treatment for an ischemic stroke is IV t-pa (ischemic stroke are those strokes caused from a blocked vessel). Time is also important for determining treatment for strokes. This drug must be given within 180 minutes of symptom onset.  Symptom onset is the last known time the person was “normal”. This means the person must get to the hospital, obtain a CT scan and have the medication available. Strict guidelines are used to decide if a patient qualifies for this treatment. Many factors may disqualify a patient from receiving this treatment. It cannot be given to everyone, especially for hemorrhagic strokes, (those strokes caused from bleeding into the brain.) Complications with IV t-pa include hemorrhage in the brain so patients receiving IV t-pa will be in the ICU for at least 24 hours with hourly assessments.


                        Treatment for Hemorrhagic Strokes 

Intracerebral hemorrhage-There is no approved acute drug treatment for a hemorrhage in the brain.  The doctors will want to keep the blood pressure controlled and not let it get too high.  They may administer blood products such as plasma or platelets to help the blood clot especially for those on any type of blood thinners. Surgery or catheters (Ventriculostomy) may be used to drain or remove fluid and blood from the brain.

                                                   Aneurysm Treatment


There are two types of treatment available for strokes caused by an aneurysm rupture; 

 

Endovascular Coiling - A tiny catheter is threaded from the groin artery up into the brain artery and into the aneurysm. Tiny platinum coils are released into the aneurysm to seal it off. Endovascular treatment originated in the 1980’s by an Italian physician Dr. Gugleilmi.  With the origination of this new treatment some patients who were told the aneurysm was inoperable now have hope for a treatment. Other patients because of advanced age, medical condition, or other factors who could not tolerate open brain surgery this could be an alternative to their treatment.

Clipping - Surgical Clipping is still the most common surgical treatment for brain aneurysms.

This requires general anesthesia, incision into the skull and removal of a section of bone.

Under a microscope the aneurysm is carefully separated from the normal blood vessel, it is then clipped with a tiny clip somewhat like a clothespin. With the clip in place no more blood can enter the aneurysm.

                                  

That's it for Part 2. I hope this was not too technical, but I did find it interesting and thought it was worth passing on to you. Next, in Part 3, I'll cover what the stroke survivor can expect from the Brain Attack and what will happen after being admitted to the hospital.

Marylee's Top 10 Stroke Tips for New Caregivers

I have been a caregiver for my husband, John,  who had a stroke over ten years ago, but recently, through unfortunate circumstances, I was reminded of the things a caregiver learns as they navigate the early years following a stroke.  This reminder came after my brother’s wife had a massive stroke.  While he was getting through the first few months, he leaned on me as the “stroke expert” asking questions almost daily. As a caregiver for my husband, John, I realized we were settled in a rhythm and I had forgotten all the ways that we adapted after his stroke.  I’ve worked with many stroke survivors and caregivers as executive director of Retreat & Refresh Stroke Camp, so decided to do my “Top Ten List” for new caregivers.  Although each stroke is different, whether it is one month or ten years post-stroke, these are some things I personally have found to be true.

1. Routine is your new best friend.  Give your survivor adequate information about any changes as soon as possible.
2. Don’t try to reason with a survivor having a melt down. They are simply not able to be rational in the moment. Remember it’s the stroke, not you that makes them angry or sad.
3. Always, I said always, keep calm in a crisis. Deep breathe and count to 10 (or 100 if necessary).
4. Don’t take the exit of friends and family personally.  It is their issue, not yours.
5. Slow down and repeat things with great regularity. Look at your survivor when talking with them (whether or not they have aphasia, they may have memory and cognitive challenges that require more attention to the conversation). 
6. Encourage your survivor to get as involved as possible in decisions involving their care or family situations.  They still need a voice and to feel they are a part of life’s decisions.
7. Allow acceptance that some things will always remain your responsibility.  (Paying bills, managing medications, overseeing doctor’s appointments, meal planning, cooking, household tasks, communicating, etc.)
8. Find your “new normal” and seek a few things that you both enjoy and then participate. (Go to the mall and walk or wheel around, get a bite to eat or a gourmet coffee, watch the people, then go home and rest.  Attend reasonably priced community theater, go to a park and watch the people as you feel the wind on your cheeks. Sit on the front porch rather than in the house, go to a support group, volunteer both of you or even independently to do something for someone else).
9. Accept that it is unlikely you will ever have a normal “marital” or “family” disagreement that will be resolved in the moment. Things that need to be addressed or changed will better come through planned discussions, one topic at a time.
10. Never ever give up because there can be progress even many years after a stroke.  The progress may not be dramatic, but it’s there.

I hope you find some of these tips helpful on your own personal journey following a loved one’s stroke.

Marylee Nunley, Executive Director, Retreat & Refresh Stroke Camp and wife of John Nunley, survivor since 2001.

Jan's Journal Part 1 - About The Brain

by Jan Jahnel

Jan Jahnel RN, CNRN is the Stroke Nurse Coordinator for the INI Stroke Center and INI Stroke Network at OSF Saint Francis Medical Center in Peoria, Illinois. Jan has 14 years of neuroscience nursing experience with the last five years focusing on stroke processes and care. Her commitment and dedication has been an important part of Stroke Camp. She works very closely with Retreat and Refresh Stroke Camp, attending many weekend camps, helping with some of our fund raisers and providing us with technical knowledge of stroke. 

The following is a Power Point presentation she has provided that explains many of the technical aspects of a stroke. I have modified it and converted it to a multi-part series in blog format.  (Please forgive the blurriness of the first picture. It's the best I could do during the conversion from Power Point to blogger format)   

 In this picture you can see the different lobes of the brain.  It also shows some important areas within those lobes, such as speech areas, vision areas, and areas for reading and comprehension.  Damage to these specific areas will result in difficulty with speaking, understanding what is being spoken, problems with vision, and balance.                                      

The left side of the brain controls the right side of the body, language centers and logical thinking.

The right side of the brain controls the left side of the body, recognition and sensory/spatial perception.

With the brain, the right side of the brain controls the left side of the body and vice versa.  The right side of the body (arm and leg ) will be affected with a left sided stroke.  The left side of your brain also controls logical thinking and your language.

The right side of the brain is responsible for vision and recognition. It also controls the movement and sensation of the left leg and arm.   The brain is a very complex and important organ.  Any interruption to the normal functioning of the brain can cause many problems.

                     
                                           Brain Attack
Strokes happen in the brain. The “Brain attack” term is used to show that a stroke is as serious as a heart attack. Lack of blood supply to the brain results in damage to the brain tissue causing injury to the brain.  Without adequate blood supply the brain tissue dies. Stroke symptoms will depend on the size of the stroke, the location and vessel in the brain that is injured. 

                                        Stroke Symptoms

                                          Types of Strokes
                                           - Ischemic
                                           - Hemorrhagic

 

There are two types of strokes. If you think about stroke as a plumbing problem an ischemic stroke occurs when the pipe gets clogged and a hemorrhagic stroke occurs when the pipe bursts.

                                          Ischemic Strokes

Here are some examples of how the pipe can clog.  An atherosclerotic clot is caused by fatty plaque buildup in the vessels.  These fatty deposits stick to the vessel wall and caus narrowing, slowing down the flow of blood. As these fatty plaques build up, the vessel looks at this as an injury and sends out cells to repair itself.  This causes a clot to form and either stops the blood flow to the brain or the clot can break away from the vessel wall and travel to the brain.  This is called a thrombotic stroke

A blood clot that travels to the brain is called an embolic stroke.  These are usually caused by a wandering blood clot, usually from the heart or the neck vessels.  Atrial Fibrillation( which is an irregular heartbeat) or a PFO ( which is a small hole between the chambers of the heart) may be the reason these clots form and are carried in the blood stream, clogging the vessels leading to the brain.

When this happens blood supply to that area of the brain is cut off and brain injury occurs.

                                       Hemorrhagic Strokes

Another type of stroke is called a hemorrhagic stroke.  This is when the pipe or vessel bursts and blood is spilled into the brain.  This is a CAT scan picture of bleeding into the brain.  The white area shows where the bleeding has occurred.

   

An arteriovenous malformation is an abnormal cluster of arteries and veins all tangled together.  These tangled vessels in the brain can rupture and bleed, causing a stroke.

                                          

                                                Aneurysm
A weakened area or a ballooning of a vessel wall

An aneurysm may happen in an area of the vessel where it splits….kind of like a T in the road.  The blood vessel weakens and the vessel wall balloons at the split.  The aneurysm can grow very large.  The walls of the aneurysm become very thin and finally ruptures spilling blood into the brain.  This is called a subarachnoid hemorrhage.

    
  


Cause of Hemorrhagic Stroke
    Long standing Hypertension: High blood pressure that is not 

    controlled adequately. There are some reasons why the pipe  

    bursts.  Long standing high blood pressure that has not been 

    controlled can weaken the vessels over time and cause them to 

    leak or burst.

I hope this gives you a little insight of what a stroke is and a little idea of what the brain looks like and its many functions. In the near future I will be covering other topics such as some diagnostic tests stroke survivors will experience in the hospital and different types of treatments while there, what stroke survivors may expect while in the hospital and later when released, managing risk factors, rehabilitation, and what support is available after the survivor has been released from the hospital.

5th Grade Education

Lindsay Kwok's Grand Prize Winning Poster

 Retreat and Refresh Stroke Camp recently completed its fourth year of doing stroke education in fifth grade classes in and around Peoria, IL.  This year we visited nine schools and spoke to 25 classrooms.  That is a total of about 650 fith grade students and teachers who now know more about stroke than the average American does!

The classes run between 45 minutes and an hour each and have multiple components.  We start by introducing everyone - nurses, students, stroke survivors/caregivers, etc...  Then we ask how many of the students know someone who has had a stroke.  You would be shocked by the number of hands that go up!  Many of the students have stories to tell about how their grandma/pa, aunt, uncle, etc... who have had strokes.  However, not many students know the warning signs and symptoms of a stroke.

That's where our nurse/s or nursing students come in!  They teach the students about what a stroke is, the different kinds of stroke, and two different ways to tell if a person is having a stroke.  Do you know all the warning signs and symptoms??

We teach them to "Gimme 5":

1. Walk - Can the person walk? Do they walk funny or stumble?
2. Talk - Is the person able to talk normally?  Do they understand what you are saying?  Do they
    mumble or talk gibberish?  Do they have slurred speech?
3. Reach - Are they able to reach up with both arms and hold both arms up for 10 seconds?  Does one arm  start to drift downward?
4. See - Do they have double vision?  Do they have tunnel vision?  Can they only see on one side?
5. Feel - Are they experiencing tingling or numbness, particularly on one side?  Do they have the
    worst headache of their lives?

We also teach them to act F.A.S.T.:

F - Face-ask the person to smile.  Do both sides of their mouth go up?  Or does one side droop?
A - Arms-ask the person to hold up both arms for 10 seconds with their eyes closed.  Does one arm
      drift or fall downward?
S - Speech-ask the person to repeat a simple sentence.  Are they able to correctly repeat the
      sentence?  Do they mumble or sound like they are speaking a foreign language?  Do they
      understand what you are asking them to do?
T - Time. If ANY of these are not right, call 9-1-1 IMMEDIATELY!  Don't let them take a nap and
      hope it will get better and don't wait to call the doctor.  They need immediate medical attention.

Time Lost = Brain Lost.

We emphasize with the students that a stroke can happen to anyone at any age of any race or ethnicity, although the risk increases with age. 

Then we have our stroke survivor and/or caregiver tell his/her stroke story.  The students always have some really great questions for them.  A common question is: What does it feel like to have a stroke?   After that, the students each participate in one disability simulation where they have to complete a task using only their non-dominate hand.  Tasks include things such as putting on and fastening a belt, putting on and buttoning a button down shirt, putting on a sock and shoe and tying the shoe, folding laundry, packing a book bag for school and zipping it, etc...  The students learn very quickly that completing these tasks with only one hand takes longer than usual and they have to be creative (adapt) in order to be successful.  The take home message is that stroke survivors are not dumb and they are not stupid!  They just might be slower at things because the stroke has effected their brain and possibly their motor coordination.

Collin Stratton's runner-up poster from Peoria Christian Middle School.  

We also teach them about prevention: eat healthy, exercise, and DON'T SMOKE!  Each student is given a poster and is instructed to create an educational poster about stroke.  We judge based on content, accuracy (spelling counts!), neatness, and creativity.  Our panel of judges selects the top three posters from each class and those students each get a gift card to Wal-Mart (a big thank you to the Pilot Club of Peoria for donating toward the gift cards).  The grand prize winner gets to ride in the Life Flight helicopter and land in center field at the Peoria Chiefs game on our Strike Out Stroke day-June 10, 2012!!!  All winning posters will be displayed on the O'Brien Field walls at the game on the 10th.

We would like to thank the Illinois Neurological Institute, in particular nurses Jan Jahnel and Teresa Swanson-Devlin for helping with and sponsoring these education classes since their inception.  We would also like to thank Jordan Jason and Kendra Zerwekh, students from the Methodist College of Nursing, who helped at some of the schools this year.  Without the assistance of INI and Methodist, these classes would not be possible.

Stroke Specific Things I Wish I’d Known Sooner

by Marylee Nunley

v  Hearing early on (in a kind, gentle, and positive way) that this is a permanent condition, but still not to lose sight of great possibilities. To be informed that recovery takes lots of time and patience by all.

v  The brain is injured and it may take up to six months for it to heal and recover.  After that time, the patient will be working with the undamaged parts of the brain through a lengthy but rewarding relearning process.

v  Understanding that each time there is a new environment, the survivor may need to re-learn things (shower at home different from the hospital, bed not as convenient, meals served differently, etc.)

v  How to find the handbooks from www.strokenetwork.org  (online support group) or www.stroke.org (NSA) at the onset.  The internet and Facebook is full of things that help families understand the different parts of care and rehab that will be happening. 

v  Being given a list of stroke specific  terminology

v  Stroke survivors may seem to understand way more than they actually do. My impression was that if he heard it, he understood just like I did.  That couldn’t have been farther from the truth.  Receptive aphasia means that the person with the brain injury doesn’t hear and process the words the way they are spoken and may not understand what is said or completely misunderstand what is said.

v  Progress will be in terms of months and years and for the rest of your life, not in just days and weeks.

v  More about the caregiver role and what will be expected once going home and about burnout.  No matter how much energy and commitment we have, there will be a time we’ll just get tired of the responsibility.

v  More about aphasia----look at the person, go very slowly, that even though they hear what you say, they may not fully understand.

v  Support groups—both survivors and caregivers need them.

v  What to look for with regard to depression (often comes out as anger or crying) from isolation and loss of parts of their life

v  Understand how frightened the patient is and how lost they are in the world and may not understand what’s really going on

v  Routine should become your best friend for awhile

v  ADL equipment, gadgets and gizmos.  There isn’t time for the medical community to provide all this information and they don’t have the means (financially, insurance runs out) short of funding of some sort of program following discharge.  Here is where support groups can help

v  Understanding Health Benefits can be a challenge and making friends with a good social worker, discharge planner, or the insurance billing clerk can’t hurt

v  Disability application is long and tedious. There are books that can help. Make the adjudicator your friend and follow through with their requests

Well, that's my list. Undoubtedly you will have other items 

that you've encountered. If you want, go ahead and share

them by leaving a comment. That way we all learn just that

much more.  

I’m not a stroke survivor. What am I doing here?

by Chuck Jones

I get asked at almost every camp why I’m volunteering my time and “muscle” for Retreat and Refresh Stroke Camp. What is my connection with strokes or the camp? Why am I attending these camps? I haven't had a stroke. I don’t have a relative Survivor attending these camps as most do. There has been at least one stroke survivor in my family history but that was a long, long time ago. I am not an employee of any medical institution that works with stroke survivors. So, why am I here?

To explain my interest, I always start out with a short history of my association with John and Marylee.  For you, I will go into more detail. And really, this is not about me, primarily, but about Marylee and John Nunley, the founders of this camp.
  

As you may know John and Marylee Nunley are the founders of Retreat and Refresh Stroke Camp, founded in 2004. I am friends with both and I started out helping on camp weekends on Saturdays only. At that time, there was only one Stroke Survivors camp a year at the Living Springs Camp Ground near Lewistown, Illinois. Lewistown is about 45 miles south west of Peoria, Illinois.  John and Marylee live in Peoria.  Why did the camp start out at Living Springs Camp Ground in Lewistown 45 miles away? Well, that could be a topic for another blog article…some day.
    

John and I both worked at Caterpillar, Inc back in the 70’s. I'm not sure when John started at Cat but I started in 1970. John started out in Joliet, Illinois, which is about 128 miles north of Peoria and I started out in East Peoria, Illinois -  the Heart of  Illinois - which is about midway between Chicago and St. Louis.  John started in the factory and worked his way up into computers and finally ended up in Caterpillar’s Information Services Department in East Peoria in building AD.  I started out in computers in building A, in East Peoria, in May 1970, as a Tape and Disk Systems Programmer. Yes, we actually used tape in those days. Also, punched cards that contained our program code. I don’t remember exactly when John and I met but it was in building AD in East Peoria after it was built in 1979 to house Caterpillar’s Corporate Information Services staff. John and I, if I remember correctly, ended up in Database Application Support together in that building, supporting similar applications. So that’s how I met John.

We parted ways for a few years as departments fragmented and permutated but, eventually, John and I ended up together again in the IMS Database Support section. John has a commanding knowledge of computer application languages and IMS databases. IMS is a hierarchical database product developed by Caterpillar and IBM back in the 60’s. (okay, wake up. I didn't mean to put you to sleep) I will tell you, if I had my own Database company, I would need only one John to have a successful business (well, maybe two, because one thing I've learned in the computer business, it’s always prudent to have a backup).

John married Marylee in 1996, and in January of 2001 John began to have a series of medical complications with pancreatitis. During that terrible time I coordinated the IMS team, and others who knew John around Cat, to provide visiting and other needs, such as grass cutting, leaf raking, etc. to help them. Those who have met John know how much a likable person he is. He has a lot of friends at Cat who were willing to help him and Marylee through such tough times. John was well on the way to recovery from pancreatitus when in September of 2001 he had a stroke. If you are involved with a stroke survivor in any way you know what that means.
  

Against her wildest dreams of how she saw John and her future unfold after their marriage, Marylee became involuntarily involved in the stroke survivor recovery process. She immediately noticed several shortcomings involved in that process. Who provides an environment where a survivor feels like a person again? Where can a survivor feel something like normal again, if only for a weekend? Marylee, being the person she is, decided there was a need for something like that and maybe she could do something about it. She and John had some past experience with running a camp for children so they decided to give it a try for stroke survivors.
   

Marylee, and her sister Sarah and her husband Boyd, had previous experience with running camps for kids with Cystic Fibrosis (thus the connection to the Lewistown location) so her logical conclusion was, why can’t this work with stroke survivors? Okay, if you’re still with me, you won’t find it too difficult to see how the now current camps evolved.

That’s the detailed history lesson I promised. Today we’re looking to have 25 camps a year plus a few MegaBrain exhibits thrown in for education. I don't know about you but to me that is some awesome growth! If you want to know more about the MegaBrain click on February in the Archives area to the right of your screen.

Now the reason for this blog article - Why am I involved? As I stated earlier, I began because of my friendship with John and Marylee. After attending a couple of these camps I was able to see how much of a positive effect the camp had on the well being of the survivors AND their caregivers. Not only the camp as a whole, with themed activities, crafts, and fun and games, fishing, and rock climbing, but what impresses me the most is for an hour or so all the survivors get together in one room and all the caregivers gather in another to share their progress, hardships, experiences, encouragement, and hope. And you wouldn’t believe the benefits, emotional healing, and hope that leaves those two rooms.

I'm proud to be a part of that.