It’s the fans that need spring training. You gotta get them interested. Wake them up and let them know that their season is coming.” Harry Caray

May is Stroke Month and some of these things about strokes I’ve noted before, but as I think about it, we just started the baseball season in the U.S. and Canada for Major League Baseball, which means we just finished the Spring Training season. I figure it’s alright to review these concepts. (If it works in baseball, why not with strokes?) It’s Spring Training for strokes! I think this is a great quote. Harry Carey was a sportscaster for several baseball teams, but I associate him most with the Chicago Cubs. I’ve always been impressed that professional baseball players get together before the season starts to review the basics of the sport, work on team attributes and try new plays in what they call Spring Training. For those unfamiliar with the concept, it’s the pre-season for the sport. This quote is perfect because it’s about fans! Now much like baseball when it comes to a stroke, it never hurts to review things and it’s everyone that benefits from this info.

Most of this information has been compiled from http://www.strokeeducation.info and living as a stroke survivor for the last ten years. The statistics relate to strokes in the U.S. but it’s probably not much different for the rest of the world. The basics are true wherever we are. These statistics are that a stroke is the fourth leading cause of death in the U.S. Somebody in the U.S. has a stroke every 45 seconds. This means that there are 80 strokes every hour. The U.S. experiences upwards of 750,000 strokes every year. Every 4 minutes, someone in the U.S. dies from a stroke. Now add the caregivers to the number of survivors and you can begin to see how people/families are impacted. These statistics relate to strokes today. We tend to think strokes happen to people of advanced age but we are finding out more and more about pediatric strokes. I would imagine that statistics will change. Our whole perspective on strokes is affected. (Then again we are finding out how plastic our brains are with pediatric strokes.) Strokes can happen at any age!

What is a stroke? Strokes are called “brain attacks”. They occur when a blood clot blocks an artery (not enough blood) or when a blood vessel bursts (too much blood). When either of these things happen, brain cells die and brain damage occurs. Anyone can suffer from a stroke. (Don’t I know?) Although many risk factors for stroke are out of our control, several can be kept in line through proper nutrition and medical care. Risk factors for stroke include males, being over 55, African American, Hispanic, or Asian/Pacific Islanders, people with high blood pressure, high cholesterol, smokers, people with diabetes, obesity, cardiovascular disease as well as heavy users of alcohol. As we know, many of us don’t fall into any of those categories, so it is very important to be aware of strokes!
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What are the signs of a stroke? There are several signs of a stroke, but the main ones for strokes are: sudden weakness (numbness or paralysis of the face, arm or leg), vision loss/headache or dizziness (sudden loss of vision, particularly in only one eye or unexplained dizziness, loss of balance or coordination) and loss of speech (trouble talking or understanding language.)

Remember FAST for Stroke Awareness

  • F = Face – Does the face look uneven? Ask the person to smile.
  • A = Arm – Is one arm hanging down? Ask the person to raise both arms.
  • S = Speech – Is the speech slurred? Ask the person to repeat a simple sentence.
  • T = Time – Call 911 (or your emergency number) NOW.

How many types of strokes are there? There are two main types of brain attacks — ischemic and hemorrhagic. With ischemic strokes, a blood clot blocks or “plugs” a blood vessel in the brain. With hemorrhagic strokes, a blood vessel in the brain breaks or ruptures. (AVM strokes are hemorrhagic.) Ischemic strokes are about 85% of strokes (Thrombosis, Embolism, Large Vessel Thrombosis, and Small Vessel Disease) and hemorrhagic strokes are the remaining 15% (Intracerebral Hemorrhage and Subarachnoid Hemorrhage).

How can strokes be prevented? Although strokes can happen to anyone, certain risks factors can increase chances of a stroke. The following Stroke Prevention Guidelines will help you learn how you may be able to lower your risk for a stroke.

  • Know your Blood Pressure
  • Identify Atrial Fibrillation
  • Stop Smoking
  • Limit Alcohol Use
  • Control Diabetes
  • Manage Diet and Exercise
  • Treat Circulation Problems
  • Get Cholesterol Screening
  • Get Carotid Artery Ultrasound Screening

As I’ve said before, Matt and I have learned heaps about the brain and strokes. The source of my stroke was an AVM which was congenital. Even with a stroke, I continue to make a link between baseball (Spring Training) and strokes. I love baseball. It is a very nostalgic thing for me. That is a big part of awareness for me — I have to be aware of something in order to deal with it.

 

“There’s a hole in the bucket, Dear Liza”

Do you remember the children’s song “There’s a Hole in My Bucket“, based on a dialogue about a leaky bucket between two characters, called Henry and Liza? The song describes a situation: Henry has got a leaky bucket and Liza tells him to repair it. But to fix the leaky bucket, he needs to get straw. To cut the straw, he needs an axe. To sharpen the axe, he needs to wet the sharpening stone. To wet the stone, he needs water. However, when Henry asks how to get the water, Liza’s answer is “in a bucket”. It is implied that only the leaky bucket is available, which if could carry water, would not need repairing in the first place. Sounds like a dilemma!

I have a friend who says of the stroke, it is what it is. How true. As far as the whole stroke journey, I would say that “thinking out of the box” has been a great way to see the stroke as what it is and find new ways to do things. It has been a huge part of the caregiver/stroke survivor partnership that Matt and I have. This thinking out of the box is a great way to look and approach much of the post stroke work. I tend to think more traditionally and Matt is the one who brings the whole concept of thinking out of the box to the relationship and certainly to the role of caregiver. I see this as an important part of the process. The things we have and do are in a large part to that thinking process. Every stroke is different (people bring different skills to the party) and strokes affect people in different ways. Here are a few examples of thinking out of the box that have been fabulous.

I talked about the “wet bathroom” that Matt did for me. We have a tankless or on-demand water heater. I’m not good at waiting or cold so this is a perfect solution for me. The water spout on the shower head has a temperature gauge so it stays at a pre-set temperature. We have Toto Washlets in two of the bathrooms, including the wet bathroom. The ataxia is so pronounced on my right side that pushing a button with my left hand for a water spray is very helpful. (The seat is also heated.) The sink and countertop are made of Corian and it is all one piece, so there are no seams. Underneath the tile on the floor, Matt installed radiant heat, which I can easily turn on with a switch to take the chill off. It has no shower stall but rather a bench upon which I can sit. Who said showers need walls and to be enclosed? A lot of people have asked me about how much of the room is tiled. Obviously the floor is tiled and each of the four walls have tile. The two walls right by the shower head have the highest tile (about 7 feet or 2.1 meters) and the other two go up about 4 feet (1.2 meters). I think of the shower being the most important part of the wet bathroom but you can see all these other things are an important part.

I was very proficient with a PC, but I even had ataxia in my eyes when I first had the stroke. (That was an issue with reading.) Matt found out that the MAC operating system (I have Safari) could be set-up to read to me. Matt switched me over to a MAC. We did the speaking thing on my e-mail in the beginning. After the e-mail was read to me, I would dictate a response to my nurse and she would type it and send a reply. Many of you got those responses. That’s one of the main reasons I switched to a MAC. We went to the Apple Store and set up several One-On-One sessions. Somebody would help me translate PC knowledge to MAC knowledge.

I’m not a good eater — especially late at night. Afternoon tea (and high tea) has been a wonderful thing as far as I’m concerned. It’s a tradition that is more popular in European countries. Historically because dinner was served so late, it was an opportunity to have a light meal or nosh in the late afternoon or early evening. This is a wonderful thing as far as I’m concerned. We have a friend who I know would say “How civilized!” I love it because I can have a light meal and sample different things. We went to a tea place in San Francisco with friends recently. I loved the experience. Afternoon tea is typically a very formal event. There were four of us at tea and each of us had a place setting of a plate, tea cup, and saucer. None of them matched! Not with each other or within the setting. It was charming. That got me to thinking ….. who says it has to match?

Here’s a post-stroke description for thinking out of the box that follows the place setting at tea. People who describe themselves as “foodies” will get this. I’ve said with the stroke that I lost my sense of taste and smell. It has slowly and gradually come back, but not as strong as it was before. It was not one of those ah-ha moments where I could suddenly taste everything. Because of memory, there are times I let Matt know I’m in the mood for something specific. He considers whether we have the ingredients and how much time is involved. Sometimes he tells me to think of a place we can go out for that item. With that in mind and where I am, I consider the presentation of the food (not just the taste), the ambience of the restaurant, is it accessible and how is the service, among other things — so out of the box describes the whole experience. If thinking out of the box is a foreign concept to you, try expanding the current box!

I’ll add an ‘I just had the stroke’ story. When I first had the stroke, I couldn’t speak. (Parts of this Matt has told me.) I was at the first hospital and a therapist came into my room and was asking me several questions. I wanted to answer, but I couldn’t. So to communicate, I bit her! Usually, I talk about how slow I move after the stroke but that day, I was faster than the therapist. Not a great image of what people do after a stroke, but an example of out of the box. By the way, I wouldn’t bite anyone today. I would use words, because I can. I love this story. I have this image of how people view stroke survivors and this story shows creativity. It’s a great lesson for all of us who think stroke survivors don’t understand or know what’s going on.

In 2000, we took a family vacation to Australia. We have great friends in Australia that we visited. The Olympics were in Sydney in 2000 and that was a big part of the vacation. (It was right before the Olympics started, so we were able to tour several venues, see the Olympic Village and see many torch runners.) I love that everyone in our family is into sports! We figured we were in Australia so a rugby or soccer jersey would be a great memento for the boys. We took the boys to a sporting goods store and I got into a half hour discussion with the owner about using cold water versus hot water for laundry. Matt helped the boys pick a jersey. As we were getting ready to check out, the owner with whom I had been having that laundry discussion said to me, “I can sign a jersey for you.” So we did and I took it back and showed our friends. They looked at it and told me it was from David Campese (Campo). It is difficult to give you a baseball equivalent, but suffice to say, it was a big deal — especially if you are a rugby fan! We have that jersey framed today. Our younger son talks about the ‘how’ and ‘why’ of something. This is the why side of ‘out of the box’ … taking an event and making it an experience! Now this is an experience. (Who ever said that water temperature is not important.) It is what it is!

This example has to do with a real box. I’ve said that I have ataxia on both sides, but it’s more pronounced on my right side and for the most part, one doesn’t even notice it on my left side. Consequently, I’ve learned to do almost everything with my left hand. (Being left-handed is a challenge in itself!) I also have weakness in both hands. This has always been the case since the stroke. When I first had the stroke, I used what I call a mirror box. I put each hand into the box, but there was a mirror which reflected activity on my left side. As I did things (like tapping my fingers, etc) my brain would see each hand active. Isn’t that phenomenal? As I think about things, I would encourage all of us to think differently about how we view things.

She who does not bite another!

I wouldn’t call myself a Harry Potter nerd, but I could hold my own when it came to trivia about the story, the movies, the actors and the author of the story. I was in the Rehab Hospital when one of the movies was released and our oldest son pulled a copy so I could watch it. The author J.K. Rowling originally wrote the books in a British version and while they are in English, there are some things that need to be interpreted for the United States audience. I have all the books in the United States version and most of them in the British version. It’s a great study on the concept of language!

Matt read some of the books to me when I couldn’t yet read and when I started reading, those books were at the top of my list to read. My memory is so bad, it doesn’t count as rereading! (Something I’ve added to my learning post stroke.)

Now for movies — Matt and I look at movies from a different perspective. Not surprisingly, from where I am today, I look at movies from an entertainment value. Can it keep my attention for 90 minutes? Matt is much more focused on the ‘continuity’ during a movie (more technical). Some of the things he notices are as follows: What time is on the clock? Is the person holding their coffee mug in their right hand or left hand? Have they always been left or right handed? Which direction is the logo facing? Is it the same cup that was used before? Now let’s step back a bit more and talk about a movie series. It could be years between the release of a movie and the next one. How does one convey the concept of continuity in that case? Most people will tell you that part of the attraction of the Harry Potter movies was the brilliance of casting. Pretty much the same actors were in all the movies. In many ways, we saw those actors grow up and consequently saw the growth in ourselves. In January, Alan Rickman died (he was the actor who played Professor Snape in the Harry Potter movies). Most people had pretty strong feelings about his character. Somebody sent a tweet to the author about Alan Rickman when he died. She had been instrumental in the casting and had thought a great deal about continuity. She had probably written 3 or 4 of the books when they decided to make the movies. She was the main person who knew the story. When Alan Rickman was cast for the part of Professor Snape, he talked to her to get an understanding of how he should play the complex character. As he finished the work on the Harry Potter movies, he revealed that author J.K. Rowling once shared one tiny, little, left of field piece of information that helped him realize that there was more to the sneering Hogwarts potion master than Harry or anyone else might have known.

In December we went to see the latest Star Wars movie (another series) — The Force Awakens (Episode 7). When they decided to make the Star Wars movie, one of the things they (the investors) looked at was talking to J.K. Rowling. How do you cast so there is continuity? In the late 70s, the first Star Wars movie premiered — that was Episode 4. Episodes 5 and 6 which came out in the 80’s were very popular. They changed the way we thought about things. In the late 90’s, Episode 1 was released, followed by Episodes 2 and 3. Those three were not as good. The story was very good, but the actors lacked depth and weren’t compelling. Could Episode 7 redeem the popular franchise? There was quite a bit hanging on that idea. They chose a director who could look backwards and forwards. So one can see how the whole aspect of continuity became a big deal.

Now I’m going back to that question that somebody asked J.K. Rowling about Alan Rickman. I really liked Alan Rickman and consequently had a hard time seeing him as a villain or any kind of bad guy. (It’s my own thing!) Now that’s a great testament to doing one’s craft. What was it that she told him? Her response to the question was ‘I told Alan what lies behind the word always‘. Isn’t that great? I love that! I see it as ‘act like you belong’. I don’t think there is an easy answer (not like skipping 50 pages), but as a metaphor for life, it really stands out. I think people should celebrate victories, but I do think we can be genuine about our celebrations and show our enthusiasm and still act like we belong. I often say “it’s easier to dress down than dress up!”. Have you ever gone to an event and felt dressed down by comparison to others? I hope you read the guest post Alison Shapiro Bonds wrote on Mindful Attention where she says “Mindfulness is the practice of bringing relaxed, openhearted, non-judgmental attention to what is happening right now, right here, in this present moment.” I love the whole idea of mindfulness! I think it’s a great way to get to the concept of act like you belong! It’s a complex thing that requires us to always be aware of life.

Over the last week I have watched all of the Harry Potter movies. Some of them came out before I I had the stroke and the others I’ve watched since the stroke. I can tell people exactly what it was about the stories that made them compelling. With everything I know now, would I look at the first few differently? I completely missed the ‘always’ part the first time I saw Part 2 of The Deathly Hallows. Now so much more makes sense!

Act like you belong!

I turned 60 in November so as you can imagine, I’ve compiled a few things that have stood out or stayed with me over the years. One of them is clearly a piece written by Mary Schmich who is a columnist for the Chicago Tribune. In 1997 she wrote a piece on advice for youth which I call ‘Wear Sunscreen”. The article starts by saying “inside every adult lurks a graduation speaker dying to get out, some world-weary pundit eager to pontificate on life.” She shares great tidbits and her one piece of advice is “Wear Sunscreen”. I love this and it makes me think that if I were to pick one piece of advice, what would it be?

I look at accomplishing those pieces of advice as victories. We tend to define victories as something huge, but realistically — a victory is a victory! If I were to inject a baseball analogy here: a win is a win. When you look at the baseball standings or summary, you will see a win. The details don’t really come into play. Was it a difficult victory? I often say one of the things I love about baseball is that ‘close’ doesn’t count. There are no ties in baseball. Let’s break things down so we can share many things and enjoy more victories.

Several years ago, we went to visit Matt’s family and one of his aunts had a great art piece in one of her rooms called Life’s Little Instructions. I loved that piece and I looked for a copy that would be mine. It took me a few years, but I found a copy as a print which we framed and I can see it every day. It reminds me of her and I love the things on it.

Here’s another thing about the stroke. I have always been bi-lingual. My Spanish was as good as my English. (I loved it when people would say to me … ‘but you don’t speak with an accent.’ Of course, I don’t know if they were referring to my English or Spanish.) There are many authors whose books I would read in Spanish before I read the English version. Now it takes so much effort to speak, that I only speak English these days. I understand everything I hear in Spanish or read in Spanish, but I don’t speak it! I watch a TV show called Jane The Virgin on the CW network. Jane’s grandmother on the show only speaks Spanish, so they subtitle her conversations. I just listen to what she says. I can’t read fast enough to follow the subtitles anyway! Rather than beat myself up because I don’t speak Spanish, I think it’s phenomenal that I understand it. Occasionally when I need to respond in Spanish, I do so very slowly.

It’s the glass half empty, half full thing. I’ve said that in October there is a World Stroke Day. One of their points is that one in six people will have a stroke in their lifetime. The frequency seems high. On the other hand, one in six seems rare. How special is that? AVMs are bleeding strokes. Statistically they are even more rare. If there was ever any doubt, let me say that I see myself as special! (We should all see ourselves that way.)

I have three things that I would summarize as the most significant learning about the stroke and I’ve shared them before in various ways. The first is my definition of renewal rather than recovery. I still use the word recover when it comes to skills. That’s one of my goals: to recover those skills that I used to do and have before the stroke. But I see recovery as a way of going back — which is something I will never do. For me, no “there” exists as a place to recover! I use the word renewal to define life after stroke. I will do things but in a different way. Each skill is a victory. These notes are a great example of that. People ask me about these. I do one for the first of each month. (Again, because I can remember that date.) I think of a topic based on things I read or see or whatever. Because of the ataxia, I only type with one hand. I do it as a draft in my e-mail so I can save it. It takes me a few days to type each one. Then it sets for a few days for me to think about and reread. Then I send a copy to Matt to check for typos, etc. (That’s important to me.) Then it is the first of the month and ta da! Twelve victories for the year. There are a few people that I send it to as an e-mail and I post a copy into the wordpress site. For those that print out my messages, you’ve noticed that most messages are around one or two pages long. I have an issue with stamina so it’s easier for me to keep things on the short side. I transfer my limitation to others. For those who read the Doerr book (All the Light We Cannot See), the concept of short chapters was awesome! Last year we went to a Ted conference at one of the local universities. It was a day long event and there was a theme for the day. Each speaker was succinct and kept their presentation brief and to the point. I loved it! It reinforced that concept that we can make our point and be brief!

The second is the idea of staying positive. I say, it takes the same amount of effort to be positive as negative. Make no bones about it, it’s all effort. If I have to make any effort at all, it might as well be positive. The third is how important the caregiver is in the journey. So I have three things about the stroke, but you know my saying that it’s easier to get forgiveness rather than permission!

In the early 90’s, there was a book that quickly rose the best seller list. Everybody was raving about it and as a reader I felt like I should enjoy it too. So I picked up a copy. (I’m not going to mention the title.) I started the book and was not into it at all. I found the story line and writing not to my taste. My first reaction was to not finish the book. My guilt conscience set in and I couldn’t imagine not finishing it. It was a big book, so I realized that I needed to change my strategy. Here’s what I did. I would read a few pages and skip the next 50, read a few pages, skip 50! Before I knew it, I was finished with the book. Ta Da! My ta da may not work for you and likewise your ta da may not work for me. I don’t recommend skipping pages to finish a book. We have to find the key for every situation.

Last month we went to a series of plays and readings at the Magic Theater. We saw one play that stood out in my mind. Lots of things were happening and I loved how it all came together in the end. A lot of people say “we all have different stories.” We do, I understand that. I also describe it a little differently. I say there is one story about life, we just have different chapters. That’s how I saw this play. That’s my ta da. I loved it!

I am a big fan of the Dan Ocean movies. I have a difficult time naming my favorite one. I love the stories and all the actors. I think that’s a big deal for me, how they all have a lot of well-known actors and how they work together. One of my favorite lines is from Ocean’s Twelve, where Frank Catton says (it helps if you do this in your best Bernie Mac voice) “let me break it down like a fraction for you.” I don’t think that we have to break everything down like fractions, but then again why not? I do think we should pick one, two or three things to highlight and when that becomes difficult, break it down (like a fraction) and pick. A victory is a victory, no matter the size.

Ta Da!

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