FACES OF STROKE

We All Struggle

By Charles Louis, Faces of Stroke Ambassador

Hello all. I hope that this blog finds you all blessed and doing well. I want to thank you for following me during my time as a Faces of Stroke℠ Ambassador for National Stroke Association. It has been a privilege for me.

During the holidays, people sometimes go through difficult times for various reasons. Some of them really struggle with the life that they have been left with, i.e., stroke, and can’t get past it. I know that for a while I struggled with “Why did this happen to me? What was I doing so wrong?” And so on and so forth. I volunteer on a call center line that gets phone calls from across the country and some of them just want to have someone to help them understand the unexplainable. And some of them just want to talk. I am glad that the Lord has given me the ability to hear and understand the un-understandable. (Hmmmm, I wonder if that group of words goes together? Oh well!)

For this reason, I still attend a couple of support groups (my stroke was in January ‘06) and after almost seven years, I still find them helpful because even though it might not be the same problem, it is the same reason for the problem—stroke. Of all the support groups that I go to, there is one that sticks out. The members are more like a family than a group of survivors. This is a place where survivors can feel safe in a chaotic world that doesn’t understand that although there may be physical problems that one can see, it the hidden ones that are the important ones and need to be attended to.

We all struggle in one way or another, whether or not it has to with stroke. I just want to encourage you not to give up. I understand firsthand about wanting to give up. I have lost (at this point in my life) the ability to drive and no longer live by myself, but I have to keep on and on and on(hey, I feel like the Energizer Bunny®! But don’t look like it!). It is a daily struggle.

As my time as ambassador comes to a close, I want to thank National Stroke Association, Taryn Fort, Anna Taylor, Ann Ahlers, Kevin Vicker (these are the people who help me post and edit my blogs) and the whole staff for thinking of me when they selected the first stroke ambassador(s)!

I want to leave you with this letter from a stroke survivor. The stroke took parts of the inward man but the soul of the man was left intact. I hope that whatever your stroke has taken from you that you can find it again. Maybe not the in the same way, but a different way that brings joy to your lives as survivors and to your caregivers.

It has been my honor and pleasure to “blog” to you. Thank you for taking the time to read. God bless you.

A Celebration

By Charles Louis, Faces of Stroke Ambassador

Hello again. Thank you for reading my posts—I am honored that you take the time out of your day. This time my post is about a celebration! The 2012 Raising Awareness in Stroke Excellence (Raise) Awards, held at the Denver Aquarium, is the topic in this post. This is the second year that I have had the privilege to have been invited. At last year’s event, I met Henry Winkler (“The Fonz”). You don’t know how bad I wanted to go up to him and go “Ayyyy,” with the thumbs up, of course! I know that would have been in poor taste, because that is “happy days” gone by. Get it? “Happy Days?” I couldn’t resist!

Unlike the first awards banquet, this year’s event had more survivors in attendance. I saw survivors I know from other support groups and that made it really nice! At this year’s event, as with last year’s, Mark McEwen, who did the weather for the CBS Morning show was the emcee. Here is some of Mark’s story: http://www.cbsnews.com/video/watch/?id=1999523n. I know that it is a little long, but it is just to show you who he is, if you didn’t know what he looked like. This year’s keynote speaker was Kevin Sorbo, better known as “Hercules.” Here is an interview that I found of him telling some of his story: http://www.newsmaxhealth.com/headline_health/Kevin_Sorbo_Strokes/2012/11/01/483755.html.

I can understand and relate to his story, as I am sure that some of you, if not all of you, can relate to having something happen to you out of the blue and change your life forever. Adjusting to this new life takes some getting used to, if you ever do. It is my sincere hope that you do, at some point, get used to your new life. This is a struggle. A constant one—every day, every night, every waking moment of your “new” life is a struggle. Not going to go off into the wild blue yonder like the last post (you ‘member? I ‘member!) but … well you get the idea.

Back to the gala. The atmosphere at this one, unlike the last, had a certain presence I can’t really explain. I think that it was the fact there were more survivors at this one. I know that really doesn’t make sense, but I guess you would have had to be there to understand my thought process. I guess the Vulcan mind meld might help—oops, there goes the mind! Well at least it still works! I tell people that I have two brain cells left: one is on vacation, and the other has put in his request for a transfer. I’m just trying to keep this one until the one that is on vacation comes back! Sorry, I digress.

Here are some pictures that were taken at the awards.

Charles with Kevin Sorbo at the 2012 RAISE Awards

Group of stroke survivors at the 2012 RAISE Awards

I am so blessed that I have the opportunity to do things like this and to meet people I would have never met in my life. Unfortunately, it came in a different way than what I would have expected. Still mulling the process over. I will get back to you.

Until next time.

Stroke Survivors Everywhere

By Dick Burns, Faces of Stroke ambassador

You made it.

You’re a stroke survivor or you wouldn’t be reading this blog.

You’re unique, you’re different. You have physical and mental problems. Trust me, you’ll continue to get better—not just well, but better! It works!

Sure, it’s going to be hard work but it’s going to be successful work. And, remember that you’ll become a better person with each step you take to heal yourself. You ask, why me. I can’t answer that ‘cause I don’t know you. May be lifestyle, may be diet, may be heredity, may be illness.

But I do know something, because I’ve been there, done that. I’m a stroke survivor, too.

Pain, depression, speech, walking, movement, coordination, eating, just washing your hands and face or putting on makeup or shaving to keep your life up, make yourself feel better. Each step, each job is a taxing chore that at first takes unlimited time. It’s all part of the healing process and it’s worth it. And it works! With today’s medicine and therapy and assistance it’ll probably take you 33 months, not the 33 years it took me.

There’s more to come, ‘cause I’ve a lot to say. To help you. The stages, the steps, the frustrations, the victory and celebration.

I Got a Rock

By Charles Louis, Faces of Stroke Ambassador

Hello again. I know that it has been a while since I last talked, but I have something new in my life that is a life-changer. Something that I, from what I have read on the problem, have really done nothing to cause—it is just some traumatic event that has happened to me (I know that you are wondering what it is; I will get to that). I have found out what is making me add many chapters to the book, “Yellow River by I.P Freely,” and yes it is sometimes referred to as “the sugar.” Fellow survivors, ladies and gentlemen, I have DIABETES! Yay!

Now you might be wondering, “why does he seem happy?” Well, I am not. I just don’t understand—I’m having the “why me” moments again, and the dreaded “WTF?!?!” moments. But I think, “REALLY?? Are you for real? What, I wasn’t having enough fun?” It’s bad enough that I have to concentrate on walking (I have foot drop), but now I have to count what I eat? And I have to take off my shoes to help me count? Really? AAAAARRRRRRGGGGGG!! Wow! I just had a Charlie Brown moment! How many of you remember that cartoon? Ah, a thought—I don’t have many of those, so hang on—remember the Charlie Brown Halloween cartoon? After knocking on the door and getting their treats, the gang all stood around looking in their bags saying, “I got Snickers,” or “I got M&M’s” and Charlie would say, “I got a rock.” That is how I feel!! I got a rock! I ‘member, you ‘member? (Thanks George Lopez!) I know that I am joking about this, and I know that this is no laughing matter, but it is better to laugh about this instead of crying. Diabetes, the last thing on my mind I thought that I would get—well that goes for stroke also.

My numbers are low, which is a blessing! I am in the pre-diabetes stage. According to my doctor, the scale starts at 5.5 to 7.0 blood glucose level for the pre- stage, and I am at 5.6 so I can try to control it with losing weight and taking medications. Well that is a novel idea, lose weight. I have been trying to do that ever since ‘09. And taking drugs? They say, “better living through chemistry.” One thing that the diabetes has taught me is to watch what I eat. According to my doctor, eating small meals six times a day will help me control or maybe reverse it. I can only hope. Before, I was watching what I eat as I ate it, and those days are over in a manner of speaking!

I might be jumping around with subject matter, but I’m scatter-brained at the moment, so please bear with me. This sucks! I feel picked on, hurt, sad. It took me a couple of days to realize what was going on, and then I cried, like I am now. It has been six years since my stroke. I am blessed in many ways and I know that it could have been worse—I could have died. I had an aneurysm. I could have more impairment than what I have. I know all these things, but it still sucks!

Diabetes, along with stroke, means that something is out of balance in your body. And the problem is only going to get worse! You have to manage both so closely that normal life is hard, even though your life hasn’t been normal since your life-changing event. Your brain is in overtime and that causes a number of things—the one that I can think of right now is being tired! For me, I have to think about what most people take for granted, which is walking. Then I have to think about what will make my numbers go out of whack when I eat. Tiring, very tiring. But I can’t give up even though I want to every day. I am in pain every day, and I know that there are survivors out there who are going through pain also, more than I am, and I understand that and I am not trying to make light of that. It is just what I am going through. And if I haven’t said it before, it sucks.

I don’t want to be doom and gloom, but this is right up there. I have stated before that I need to lose weight. I am tired of being a butterball! I better watch out, since Thanksgiving is around the corner! My weight has been a thorn in my side since…I can’t ‘member (I know, I just couldn’t help it!).

OK, OK. I am going to look at the positive side. My numbers are to the point that I can control it through diet and exercise. I have been using my Wii and it has HELPED! That was one of the best investments that I have ever made! Dealing with the aftereffects of my stroke has taught me that I can do almost anything that I put my mind to. I have met a lot of wonderful and real people who are worse off than me and they haven’t given up. I will not give up, even though some days I really, really, really, did I say really?, want to give up!

Well that is all that I have for now. Thanks for reading my rant!

Until next time.

Handbook of Hope

By Dick Burns, Faces of Stroke Ambassador

Carmel, California—two names that say “don’t travel, paradise is here.” And so am I.

The occasion was a book signing in the beautiful Barnyard shopping Center in Carmel. A chance to convince people that this Handbook of Hope is for real and that stroke survivors everywhere can make a better life. Don’t believe it? Read the book (that’s what all the people who came were heard to say.) Adversity brings out the best in us.

At 82, I should be relaxing and enjoying the fruits of my labor. Instead, I’m going a second round to tell and teach stroke survivors their lives are not over, they’re just beginning. (The first round was about “Mad Men”—perhaps you’ve watched a bit of my former life in the fast lane on TV.) I’ve been given a second go-round and wrote a book about it. To help. You.

It’s really great meeting people, reminiscing and talking of survival, hope and help. That’s what the National Stroke Association does. It shows the way. It provides the help. And that’s why I’m a part. I’m an ambassador for you.

When you’re down and pretty much decided that you’re never going to get better, when it seems black and hopeless…. I’ve been there. There were times when I would have ended it all (if I could) but that’s the easy way and it’s not very satisfying and there’s no future. Better you fight. Sure it’s hard, but you’ve got help. You’ve got people working with you, pulling for you to succeed. You’ve got medicines and therapy and equipment and lots of time. To make it work. To do. To come back to a better life.

Yes, you can!

Dick

Podcast: Lenice Hogan Talks TIA vs. Stroke

Lenice Hogan, Faces of Stroke Ambassador, appeared on Omaha’s News Radio 1110 KFAB on August 8, 2012 to discuss Omaha Mayor Jim Suttle’s stroke and more. Listen to the podcast.

Life Can Change in a Moment’s Notice

By Charles Louis, Faces of Stroke Ambassador

Hello everyone. I hope that you and your families are blessed and well. I want to take a minute to reflect on some things. There are things in our lives, being survivors, that are uncontrolled and unexpected. I know when I had my stroke, stroke was the farthest thing from my mind.

As I look back on how I was lost in the fog after my stroke, I can remember only bits and pieces of who I was before my stroke. Not really the person I was, although that person has changed—just the things that were taken away from me by no choice of my own. Sometimes I still feel like I am in a fog, directionless. I HATE that feeling. The ambassador program I am blessed to have been chosen for gives me a direction in a world of chaos so that I may, in some small way, help to give some direction to other stroke survivors so they can see their future. PLEASE keep in mind that everyone is different and by no means am I saying that everyone will get back what they lost, but I would like to raise awareness to the best of my ability that things are possible.

Until next time.  

Strike Out Stroke

By Charles Louis, Faces of Stroke Ambassador

Hello again! I hope that I didn’t bore you the last time that I wrote. Well, here goes again. I have done some great things since my stroke, but I would have to say that one of the best times that I have had so far was when I went to the Colorado Rockies baseball game to help out with Strike Out Stroke. This was one of the highlights of my life to be able to step onto a professional sporting stage! I was honored to have been selected to participate in this event and to share a special moment with some other survivors. I know that it is a lengthy (well, sort of) video, but I hope that this might help you to see that I am trying to get the word out about stroke the best way that I can with the help of some amazing people! Hope that you enjoy! And yes, I followed up with the photographer and after taking my video, the camera still works!

Until next time.

Mobile Technology: Lifesaving for Stroke Patients?

By Jim Baranski, Chief Executive Officer, National Stroke Association

I’m often on the road representing National Stroke Association on various boards, committees and task forces. When in travel mode, I rely primarily on my mobile device to keep me connected to the rest of the world. Sure, my laptop travels with me for day-to-day work, but it’s really my smartphone that helps me maintain communication with all of our staff and board—and you (cue: “Like” my new Facebook public profile as CEO of National Stroke Association, which I update primarily via smartphone).

Mobile technology is time-saving, but is it also lifesaving? Several years ago, we began to hear anecdotally about how stroke survivors’ lives were saved because of their mobile phones. Simply put, the portable, hands-on access to 9-1-1 for help and to the Internet for symptom tracking has proven to be critical during the first phases of a stroke.

Today, as we send and receive nearly all of our communications via mobile devices, those stories are increasing. It’s clear by reading the hundreds of Faces of Stroke stories that mobile technology plays a key role in saving lives.

It begs the question: Are there more opportunities for increased urgent response to stroke warning signs because of mobile technology? Consumer health applications are being developed at a vehement pace, and GPS integration and innovative symptom trackers may be making a difference. I’m not a technology expert, so these are simply pondering thoughts, but read these three inspiring stories of survivors who may have experienced very different outcomes without mobile technology at their fingertips.

Nick S. had a GPS locator on his phone that helped a 9-1-1 operator identify his location and send law enforcement and EMS to save his life.

April M. was able to text an urgent message to her neighbor for help after experiencing stroke warning signs.

Wendy B. managed a call to 9-1-1 although she struggled to communicate well.

Faces of Stroke stories are snapshots of bigger issues—trends, even—that we’re finding out about because of your willingness to share with us. There is nothing more valuable than real-life viewpoints that many of us would never otherwise know.

The simple act of sharing goes beyond that, however—it reveals opportunities to improve results after a devastating and often life-changing neurologic event called stroke.

I’m never too far away from my phone for numerous reasons. But I’ll bet after reading this, you’ll have the same thought about your mobile device as I have: Never leave home without it.

Workouts With the Wii

By Charles Louis, Faces of Stroke Ambassador

Hello again. I hope that this messages finds you all blessed and well. This week at National Stroke Association, we are celebrating Wii fitness week. Because my stroke left me with foot drop, I can’t get a normal cardio workout to lose the “extra” baggage that I have “grown” used to lugging around. The Wii is one of the best investments that I have ever made. The Wii has low- to no-impact workouts that can strengthen the heart and endurance and will help overall well-being (I have found this to be true, but this is just my opinion).  If you can get one, or get access to one, try it, you might like it! Hey, I just had a “Mikey” moment. How many of you remember that commercial? Trivia question in my message! 

Until next time.