Sunday, June 29, 2014

Stroke 101 Fact Sheet

The content of this fact sheet came from the National Stroke Association web site:  
Click on the link for "What Is A Stroke" at the top of their page and there you will see another link to download it if you want to help spread the word.

All of you RRSC Campers already know this stuff but I'm hoping to reach those readers who have not yet been exposed to strokes or stroke survivor/caregiver life. This blog gets over one thousand hits a month so I'm hoping to increase that awareness.

Stroke 101 Fact Sheet

Stroke is an emergency and a brain attack, cutting off vital blood flow and oxygen to the brain.

In the United States, stroke is the fourth leading cause of death, killing over 133,000 people each year, and a leading cause of serious, long-term adult disability.

There are an estimated 7,000,000 stroke survivors in the U.S. over age 20.

Approximately 795,000 strokes will occur this year, one occurring every 40 seconds, and taking a life approximately every four minutes.

Stroke can happen to anyone at any time, regardless of race, sex or age.

From 1998 to 2008, the annual stroke death rate fell approximately 35 percent, and the actual number of deaths fell by 19 percent.

Approximately 55,000 more women than men have a stroke each year.

African Americans have almost twice the risk of first-ever stroke compared with whites.

Types of Stroke

Ischemic stroke occurs when arteries are blocked by blood clots or by the gradual build-up of plaque and other fatty deposits. About 87 percent of all strokes are ischemic. 

Hemorrhagic stroke occurs when a blood vessel in the brain breaks leaking blood into the brain. Hemorrhagic strokes account for thirteen percent of all strokes, yet are responsible for more than thirty percent of all stroke deaths. 

Two million brain cells die every minute during stroke, increasing risk of permanent brain damage, disability or death. Recognizing symptoms and acting FAST to get medical attention can save a life and limit disabilities. 

The prevalence of transient ischemic attacks (TIA – “mini strokes”) increases with age. Up to 40 percent of all people who suffer a TIA will go on to experience a stroke. 

Women are twice as likely to die from stroke than breast cancer annually. 

The estimated direct and indirect cost of stroke in the United States in 2010 is $73.7 billion.

Stroke is an Emergency. 
Call 9-1-1. 

Few in the U.S. know the warning signs of stroke. Learning them – and acting FAST when they occur – could save your life or the life of a loved one. Do not ignore the following signs thinking stroke will go away. It Won't.

Use the FAST test to remember warning signs of stroke.

F = FACE     Ask the person to smile. Does one side of the face
A = ARMS    Ask the person to raise both arms. Does one arm
                      drift downward?
S = SPEECH Ask the person to repeat a simple sentence. Does the
                      speech sound slurred or strange?
T = TIME      If you observe any of these signs (independently or
                       together), call 9-1-1immediately.

Reducing Stroke Risk

Many risk factors are beyond your control, including being over age 55, being a male, being African-American, having diabetes, and having a family history of stroke. If you have one or more of these risk factors, it is even more important that you learn about the lifestyle and medical changes you can make to prevent a stroke. However, everyone should do what they can to reduce their risk for stroke – learn more by reading and following the Stroke Prevention Guidelines below.

Medical stroke risk factors include:

Previous stroke, previous episode of TIA (or mini stroke), high cholesterol, high blood pressure, heart disease, atrial fibrillation and carotid artery disease. These risk factors can be controlled and managed with the help of a healthcare professional.

Lifestyle stroke risk factors include:

Smoking, being overweight and drinking too much alcohol. You can control these risk factors by quitting smoking, exercising regularly, watching what and how much you eat and limiting alcohol consumption.

Stroke Prevention Guidelines

1. Know blood pressure (hypertension). High blood pressure is a major stroke risk factor if left untreated. Have blood pressure checked yearly by a doctor or at health fairs, a local pharmacy or
supermarket or with an automatic blood pressure machine.

2. Identify atrial fibrillation (Afib). Afib is an abnormal heartbeat that can increase stroke risk by 500 percent. Afib can cause blood to pool in the heart and may form a clot and cause a stroke. A doctor must diagnose and treat Afib.

3. Stop smoking. Smoking doubles the risk of stroke. It damages blood vessel walls, speeds up artery clogging, raises blood pressure and makes the heart work harder. Stopping smoking today will immediately begin to decrease risk.

4. Control alcohol use. Alcohol use has been linked to stroke in many studies. Most doctors recommend not drinking or drinking only in moderation – no more than two drinks each day. Remember that alcohol can negatively interact with other drugs you are taking.

5. Know cholesterol levels. Cholesterol is a fatty substance in blood that is made by the body. It also comes in food. High cholesterol levels can clog arteries and cause a stroke. See a doctor if your total cholesterol level is more than 200.

6. Control diabetes. Many people with diabetes have health problems that are also stroke risk factors. Your doctor can prescribe a nutrition program, lifestyle changes and medicine to help control your diabetes.

7. Manage exercise and diet. Excess weight strains the circulatory system. Exercise five times a week. Maintain a diet low in calories, salt, saturated and trans fats and cholesterol. Eat five servings of fruits and vegetables daily.

8. Treat circulation problems. Fatty deposits can block arteries carrying blood to the brain and lead to a stroke. Other problems such as sickle cell disease or severe anemia should be treated.

9. Act FAST at the first warning sign of stroke. If you have any stroke symptoms, seek immediate medical attention.


Sunday, June 22, 2014

Thoughts That Can't Be Spoken

New York Times SundayReview


MONDION, France — ONE early evening a week before last Christmas, I sat down at my desk to answer a letter. But just as I was about to write the first words, I felt as if they were escaping me, vanishing into air before reaching the paper. I was surprised but not concerned. I was very tired and promised myself to stop work after finishing the note.

Trying to concentrate harder, I attempted to form in my mind the sentence I was supposed to write. But while I knew the gist of what I wanted to say, the sentence would not take shape. The words rebelled, refused to do as I asked them; unlike Humpty Dumpty, who tells Alice that when using words, “the question is which is to be the master — that’s all,” I felt too weak to give the elusive words orders that they would be required to follow.

At last, after much mental strain, I managed to string a few words together and set them down on the page. I felt as if I had been groping in an alphabet soup for the words I needed, but as soon as I put in my spoon to grab a few, they would dissolve into meaningless fragments. I tried to tell my partner that something was wrong, but I discovered that I was unable to mouth the words, except in a protracted stutter. He called for an ambulance, and an hour later I was in an emergency room being treated for a stroke.

To prove to myself that I had not lost the capacity for remembering words, only that for expressing them, I began to recite in my head bits of literature I knew by heart. Thankfully, the flow was easy: Poems by St. John of the Cross and Edgar Allan Poe, chunks of Dante and Victor Hugo, doggerel by Arturo Capdevila and Gustav Schwab echoed clearly in the darkness of my hospital room. The ability to read never left me, and a few hours later, I found that I was again able to write. But when I tried to speak to the nurses, the stammer persisted. Only after four or five weeks of hesitant speech did it disappear.

The experience, while terrifying, made me reflect on the relationship between thought and language. If thought, as I believe, forms itself in the mind by means of words, then, in the first fraction of a second, when the thought is sparked, the words that instantaneously cluster around it, like barnacles, are not clearly distinguishable to the mind’s eye: They constitute the thought only in potential, a shape underwater, present but not fully detailed. When a thought emerges in the language of the speaker (and each language produces particular thoughts that can be only imperfectly translated), the mind selects the most adequate words in that specific language, to allow the thought to become intelligible, as if the words were metal shavings gathering around the magnet of thought.

A blood clot in one of the arteries that feeds my brain had blocked for a few minutes the passage of oxygen. As a consequence, some of my brain’s neural passages were cut off and died, presumably ones dedicated to transmitting electric impulses that turn words conceived into words spoken. Unable to go from the act of thinking to its expression, I felt as if I were groping in the dark for something that crumbled at the touch, preventing my thought from forming itself in a sentence, as if its shape (to carry on with my image) had been demagnetized and was no longer capable of attracting the words supposed to define it.

This left me with a question: What is this thought that has not yet achieved its verbal state of maturity? This, I suppose, is what Dante meant when he wrote that “my mind was struck / by lightning bringing me what it wished” — the desired thought not yet expressed in words.

Under normal circumstances, the progress from the conception of a thought in the specific linguistic field of the thinker to its verbal constellation, and on to its expression in speech or in writing, is instantaneous. We don’t perceive the stages of the process, except in half-dreams and hallucinatory states (I experienced this when, in my 20s, I experimented with LSD).

Unable to put my thoughts into words, I tried to find synonyms for what I knew I was trying to say. Again, a simile might help: It was as if, traveling down a stream, I had come to a dam that blocked my way and sought to find a side canal to allow my passage. For instance, in the hospital, discovering that it was impossible to say, “My reflective functions are fine, but I find speaking difficult,” I managed to blurt out to the doctor: “I have words.”

I experienced the expression of negatives as especially difficult. In my slowed-down mental process, if I wanted to say, in answer to the nurse’s question, “I don’t feel pain,” I found myself thinking “I feel pain” and adding “no” to the affirmative sentence. Accustomed to my normal rhythm of speech, I would try to answer at once, but the words would come out as “of course” or “yes” before I had time to frame my thought in the appropriate negative. It seems that in my mind, affirmation precedes negation.

Perhaps, I said to myself afterward, this is how one’s literary style works: finding the right waterway, not because of any blockage of the verbal expression but because of an aesthetic sense that chooses not to take the commonplace main course (“The cat is on the mat”) but a personal side canal (“The cat slumbers on the mat”).

Lying in the hospital, allowing my brain to be scanned in coffinlike machines, I reflected on the fact that our age has allowed our curiosity a capacity that medieval theologians believed impossible, except for God: the observation of our observing, the ability to be both audience and performer of our intimate mental acts — holding, as it were, our soul in our hands.

Now, after my stroke, I try to make myself aware of the path my thoughts travel before transforming themselves into words on the page. I try, but it’s all too quick. My thoughts outwit me.

Alberto Manguel is an Argentine-born Canadian writer, translator and editor, and the author, most recently, of “The Traveler, the Tower and the Worm.”

A version of this op-ed appears in print on March 9, 2014, on page SR8 of the New York edition with the headline: Thoughts That Can’t Be Spoken. 

Sunday, June 15, 2014

From a Brain Kept Running

At least one of our camp volunteers left her brain running last weekend when she should have been sleeping. And, this is what happens. If you are "Friends" with Monica Vest Wheeler, you've probably already read this on her FaceBook page. I did, and I was touched by it, so I thought her late night thoughts were worth sharing with the rest of you.

by Monica Vest Wheeler
An online discussion group topic on traumatic brain injury(TBI) had me typing in the middle of the night … so what else is new … Thought I'd share my thoughts on this issue before I go back to sleep …

This reaffirms what I learn from TBI survivors and caregivers as I'm focusing on creating upcoming books and related materials on coping with the emotional and everyday challenges of TBI. It affects not only the person with TBI but everyone around them. This is true with virtually all brain-related injuries, illnesses and diseases. I've learned this from my writing on Alzheimer's and being a caregiver for my father-in-law a few years ago, when he was diagnosed with Alzheimer's, which we learned after his passing was actually vascular dementia.

I've attended about 50 Retreat & Refresh Stroke Camps as a volunteer — where I am this weekend in Illinois. I've been attending some TBI camps in the last few years and will go to at least five this year, including a children's TBI camp this coming week in PA.

I've heard just about everything as I lead survivor or caregiver discussion groups at Stroke Camp and interact with survivors and caregivers in other ways around the country … from the hopes to the frustrations, from the lack of public understanding to the intense social isolation, from pure love to the joys of the simplest things in life. The same is true for those affected by TBI.

We often hear and speak about the "new normal" after a brain "event." Most people don't get that that "new normal" is constantly redefined as the brain reconstructs or adjusts itself every second. And there is a great deal of impatience and misunderstanding about fatigue, often viewed as laziness or a way to command sympathy. I've witnessed the intense pain and tears of so many survivors whose families belittle or ignore them or focus only on their INabilities or DISabilities.

Though medication alleviates many of the challenges I face with the depression I've lived with for many years, I understand that my brain gets tired more easily, and my body does, too. God bless my husband for understanding that there are days when I just need to sleep or "chill" or I'm not going to be MY best … which is the "best" for him and everyone I love

Brain injuries, illnesses and diseases ARE a human tragedy, and each of us has a chance to rewrite that script for better understanding and compassion. Communication is the biggest key to promoting that connection … survivors and caregivers and families talking, listening, observing and learning from each other the challenges each face in coping with the changes. That connection is a powerful force in healing bodies, brains and relationships.

Nearly everybody fears what they cannot control or fully understand, and the human brain is the one of the scariest unknowns in the universe. Even "normal" people have bad days when their brains are simply tired or are trying to process too much. We are surprised when the person who always has a steady positive attitude snaps at us. Alas, each of us is human

Thanks for setting my brain "on fire" enough to write this in the middle of the night … now back to sleep for another exciting day at Stroke Camp!


Sunday, June 8, 2014

Living up to your potential?

The following article is taken from the Strokenetblog website: 

It was written by Steve Mallory, President & CEO of The Stroke Network and originally posted on their site September 25, 2013. I have Steve's permission to re-post it on our blog. I hope you find it as interesting and inspiring as I do.

Please visit them for many more articles about and by stroke survivors. 
Here is Steve's:

Article written by: Steve Mallory, President & CEO, The Stroke Network,,, Personal Website:

Are you living up to your potential, since your stroke. I know that stroke can be extremely devastating to how you perceive yourself and I thought that if I can change a couple of minds then maybe my story might be worth reading. I have to warn you, what I am going to say has not all been a can of corn!

Let me take a few minutes to give you more about my background so it makes sense why I wound up where I am. I didn’t just fall into this, where I am now, but followed the path of least resistance.

I had my stroke while on a business trip in Toulouse, France. That was in 1994. What a shocker! I was only 36, which is in the age range of most of our survivor members. Ages 30 through 60 are a more predominant age for stroke than I ever thought. I had a reasonable education of an Associates Degree in Engineering and Bachelors in Business. I thought that with my education and background that I would go a longs way with Aerospace! I was highly motivated and was willing to work my tail off!

I had spent my first five years in an aerospace laboratory performing tests and writing technical papers about my mechanical and physical testing. I think that performing this type of work is what makes me so analytical and motivated to take the time to be able figure things out. This was a great job but was not something I wanted to do forever.

I spent the next two years working as a Quality Engineer. This job also required an analytical approach but usually meant that we were the bearer of bad news that our plant had manufactured a part incorrectly. My last seven years were spent as the Chief Quality Engineer in charge of the other Quality Engineers and Inspectors. I had so much responsibility I could hardly keep track of everything. I had to travel all over the world and work with businesses that made parts for my company and then also try to stay on top of what was going on in our plant.

In addition, I was the one who had to give final approval for the fan reversers that we delivered to Pratt and Whitney and then which were assembled to the wings of the Airbus A-330 aircraft. The assembly took place at Airbus in Toulouse, France and that is why I was in that country when I had my stroke.

I was stressed to the max! I could not make a move without somebody asking me about 80 million questions! I was burning out and snapping at people over nothing! I think the 14-hour days caused me to reach my breaking point!

One morning I woke up and the room was spinning out of control. Several more TIA episodes later I had my stroke. I think it lasted three days before the final attack. Naturally, I thought I had just been working too much. The stroke hit me like a thief in the night!

I tried calling my wife from the hospital but just gave a garbled a message. I thought I was speaking clearly but found out later that I made no sense. Little by little, over several hours, my motor controls completely stopped. I was locked-in and had no movement below my nose. Now here’s the scary part, my cognitive functions continued to function at about 95%. Can you imagine not knowing what was going on, not being able to talk or move and your doctors and nurses talking to you in a foreign language?

I can order French meals and knew some of the common French phrases but that’s about it for my knowing the French language! I recognized about 5% of what they were saying and everything else was Greek! They took me to an operating room and put me to sleep. When I woke up I had a tracheotomy! Talk about nightmare! It was every ones worst dream come true! Needless to say my story is probably not much different, in principle, than most of you.

Things could not get much worse and I decided right in the beginning that since I still had my mind that I was not going to give in. Figuring things out was my specialty. What was so discouraging, though, was that I was REALLY paralyzed. I could not fathom how weak I was. I don’t know how you guys feel but my paralysis is a total weakness that is impossible for an able-bodied person to imagine. I had a feeding tube down my nose, a suction tube down my throat and an oxygen tube hooked up to my throat. I did not know how I looked and still did not know that my speech was gone because of the stroke. .

Anyway, I want you to understand that I have had my share of shock and awe! I know that you and your loved ones have gone through equally devastating times. I do not consider myself to have gone through anything more or less than you all have. Just consider that the pain that we all have gone through as enough to make us brothers and sisters.

Do you remember the movie with Richard Dreyfuss and Bill Murray called, “What about Bob?” Murray plays Bob and Dreyfuss is his psychologist. The good doctor goes on vacation and Bob follows him there bugging him for advice about his psychotic life. He is told to think about taking life in baby steps, meaning, take things slow, take your time making decisions only about one thing he can overcome and accomplish it and then move on to the next thing he wants to overcome.

This was my mantra almost from almost day one. I knew I must not focus on improving more than one thing, whatever it was, it had to be achievable and then I had to move to my next goal. Of course, my very first goal was communication! Without it I was toast! This had to be the worst period of my life! Living without communication is a horror story and I lived without it for over a month! I had to make contact with the outside world. My inner dialogue was perfect. I had to let everybody know that my mind was still there and that I could feel everything that was being done to me.

I began communicating by blinking once or twice to yes and no questions. Next, I was blinking to the written alphabet to spell out words. And finally, I was staring at objects I was interested in and looking at a communication board to spell words and sentences. This progress did not happen overnight and took tons of patience. I thought, baby steps, Steve, baby steps!

Next, my most important goal was being able to move and control my head. The human head probably weighs over 10 pounds. If I were sitting up in bed my head would flop over. The nurses would prop pillows on either side of my head. Eventually, one of the pillows would move down and my head would move with it.

One time, I was propped up in bed and left by myself for about an hour. My wife had to go eat dinner and a nurse was supposed to look in on me. Gravity soon started making the pillow move down and so did my head. My neck and head eventually were almost perpendicular to my body. I know I had to look contorted! The nurse obviously had gotten called away and then forgot about me. My wife came back from dinner and found me like that and was furious!

Little by little and day by day my neck was becoming stronger. I had to continuously perform neck exercises. For a long time, my head was bobbly. I started by lifting from left to center and then right to center, forward and backwards, over and over. The computer use was excellent exercise, too! Slowly but surely my head control got better and better. Baby steps, Steve, baby steps!

I guess my point here with telling you about my first goals and accomplishments after my stroke is to let you know that life after stroke is nothing more than a series of baby steps. You cannot give up because you think your life is ruined. I could see that the only way to get whatever I wanted was to use my noggin and then to figure out a way to make it happen.

Setting goals that are too much could make you think that something is not achievable but if you start out slow and bite off a small piece of it, just a nibble, and then be patient and take your time mastering that small piece you can do so much more than you ever thought.

If you go to my web site at you will see that I have been extremely busy over the past 10 years. I was able to accomplish these things by taking it slow, not trying to do too much at once and then making sure that I mastered whatever it was that I had to do. I certainly do not have everything listed but just the ones that I did should show you that I made up my mind not to sit still after my stroke.

You must live up to your potential if you want to feel that your life has been successful. You do not have to feel that having a stroke was the end of your life. It’s true, things will never be the same again but does that mean that living a productive life is finished? Are you ready to end things just because you are out of shape, walk or talk funny?

It’s not the end of the world but making a life for yourself again is something you and your family can brag about! You don’t need your old job back or have to drive again, especially if it’s not safe to do so. What is important is that you are the best person you can be and that you aren’t sitting around feeling sorry for yourself.

Most people know that I am a Christian and although I am not going to evangelize, please bear with me while I quote my favorite scripture.

So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2Cor 4:18

This verse was the key to me being able to accept what I became after my stroke. I had so many things wrong with me that this burden was almost too much to live with. So, I made up my mind to do what I could and to do them well and to just accept what was too much to change. I feel like I’ve lived up to my potential by doing things this way! A friend once told me that life is like a blank canvas. You can draw anything on it that you want.


Sunday, June 1, 2014

Green Lake Wisconsin Stroke Camp

Dan Prueher, UW Health Marketing

Instead of telling you what our camps are all about I decided to include this 6 minute video:

taken at our Green Lake, Wisconsin camp last year. It was produced by Dan Prueher of the Marketing & Public Affairs department, UW Health, Madison, Wisconsin. 

Dan was also a busy volunteer at our Green Lake camp last year and did a great job reprising Johnny Carson's The Tonight Show skit as the question guesser, Carnac the Magnificent. (This video includes a sample of Dan's talent. And, if anyone remembers what the Question was...)

Thank you Dan for producing this video and for helping us at camp. It's people like you and the other UW Health volunteers who make our camps a success and a lot of fun.