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IT TAKES A VILLAGE....

Hi Everyone....I guess I would never make it as a professional blogger...given the length of time between blogs. Lots of thoughts here today after a very wonderful outpouring of support and encouragement last night Just wanted to share a little. I have the very distinct privilege of meeting new survivors and their families on an almost daily basis...It is my passion and has become that dream job I looked for for most of my life. Early this year, I met a young couple when I had the opportunity to speak at their rehab favility. They had been through so much...so much. As survivors, we all have our stories with our challenges, heartbreaks, insights and successes on this wild roller coaster ride called recovery. I've told this story many times but for those of you who haven't heard it, I do want to share it and for those of you who have heard it many times, please bear with me. There was a young couple living right here in St. Louis who met in a grocery store and "we liked each other"". They were from different parts of the world, no families close by, married several years and excitedly awaiting the birth of their first child when one day, something went terribly wrong. The young mother had a brain tumor. She was told that when she was six months term, her baby would have to be delivered so that she could have surgery. Well,she did deliver a beautiful little boy three months prematurely, had the surgery...then a stroke. When I met them, she could not speak. They were going from therapy directly to the hospital to visit their child every day. There were many difficult choices to make, no family close by, loss of jobs and two of the three people in the family, fighting for life. There is good news here. Though in and out and many hurdles, baby finally got to go home at about nine months old. Mom is still working hard but has most of her speech back and Dad, the protector of thfamily universe, has proven himself a super-hero. This young couple never once asked for funds....always only seeking resources so they could find help on their own. About a month ago, they received the devastating news that the Dr. thought the tumor had returned. The fear...rather terror, was back in their midst. They were still fighting , but the year long battle was starting to wear. The great news is that it was not a tumor....and her we are. We (the ABC Brigade) decided to hold a first birthday party for Baby Amir who turned one today, a "stroke-a-versary party for Mom and a "we are winning the fight" for the whole family. Once the idea was out there, the number of people who came forward and what was accomplished in a very short time....there are no words. I started to list everyone here and had to quit, (you all will hear from me individually) but there was a lesson for me here. It wasn't about the fundraising...it was about our stroke community.... survivors, families, care partners, stroke professionals and those who are just in it because someone they love is a survivor. I got a text from the family today talking about the outpouring of encouragement, the offer of support, the stories from every survivor who talked to thewm and assured them.....it was a turning point for them. Yes, after stroke, we all have our stories of hardship, frustration, fear and pure rage....and yet....there they all were...bringing gifts for the baby, offering baby furniture...so many things. The highlight of my night was seeing a survivor walk in, one who at one point had given up all hope. He was not there to eat, but to make a donation. The ABC Brigade wishes we could help everyone, but I discovered it wasn't the ABC Brigade that made that party possible...it was the love and support....and neverending energy of people who "get it" and who let this family know "we've got your back", putting aside their own worries and frustrations for a little while to help someone else. It means more than anyone can ever guess to be a member of this exclusive club of which I would not have chosen to be a part. Never underestimate the power of a stroke survivor......and watch what happens when we all band together to help the one, who then finds the strength to be there for the next one....We are so lessed to be in this village! Have agreat week!!!! PS I promise I will really TRY to be a better blogger...I know some of you are laughing!

February 5 - Defining date in my history....

FEBRUARY 5...A date that seems to have followed me for many of my life's journies...The date for many anniversaries and memories...So, let's see... February 5.... 1977 - Got Married 1980 - Closed on our first....and only...house 2008 - Massive life altering event that changed my life's 'course and perspective... I often hear the phrase, and I've used it myself, "don't let the stroke define you" I get that..I really do, but don't all of our life experiences define who we are? When I got married, I went from sharing my room with my little sister to sharing space with a man I had committed to spend my life with. (Sorry, my grammar police...shouldn't emd with "with") And here we are, 40 years (how did that happen???) today! 40 years, ups, downs, twists, turns and I continue to learn more about myself and this man who stood by, encouraged me and helped me do things for myself and is the Chief Volunteer for the ABC Brigade. When we moved from our great old apartment to owning a home, (a wrecked place that desparately needed TLC), there were changes in life that were unexpected, challenging and exciting. When stroke took its viciously swift blow, I thought I was pretty much done...I'm pretty sure we all did! However, I realized that that single event forced me to see the world differently...I had great professional care. My primary Dr., who I avoided at all costs Before Stroke "BS", is now my go-to for questions, advice. I had the greatest neurologist who would always take the time to answer my questions..don't even get me started on the therapists and nurses I had... My siblings, nieces and nephews and friends all rallied around me. AND I learned that I had raised two young adults that did not abandon, treat me as a burden, but who stepped right up and did what they needed to do while both just taking their first steps out in that big world. So, today, February 5, using those three events, I realize that my choices, life's unexpected "interruptions" have defined me...still not sure where that "Bullhead" gene comes from, but as my husband has said many times, "It really paid off this time!" . So, my fellow stroke survivors...you may have learned as a result of your stroke that "You are braver than you believe, stronger than you seem, smarter than you think and loved more than you know". So, while this life altering, sometimes seemingly insurmountable "interruption" causes you to reflect on qualities you may have never known about yourself, then stroke does define you, but in that same breath ...because of all those courageous characteristics surfaced, then YOU will be the one to "define" this stroke ... not vice versa!! HAPPY FEBRUARY 5.... 40/9 Kathy

Coffee Cafe-sia????? Don't forget the Stampede!

Hi Everyone! Missed last week...sorry! I wanted to tell you about one of our programs that has become quite successful. It is called "Coffee Cafe-sia". I had a survivor say that was a mouthful even for someone without Aphasia!!! This program started in March this past year, as a casual social opportunity for people with Aphasia to come and "practice". We started out at Schnucks, but noise and the addition of Mahjong players made this space a bit of a challenge...and yet people came every week! Then MoBap really stepped up and offered the ABC Brigade use of their auditoriums to meet....AWESOME!!!! There is no therapy....though it could be considered therapeutic....just coffee and conversation. While we do have a donation jar sitting out, there is no fee or charge of any kind for this. MoBap even has allowed us to use a conference room so the care partners of the survivors meet and have their own coffee klatch going on!! I have grown quite attached to this crew...they are in my heart. Not to get too mushy here, but you see the folks who have no words yet, the hesitant newcomers, a group studying vocabulary words together and a loud, rowdy UNO game at another....it's just an amazing, caring, supportdriven group of people!!! If you know someone who has Aphasia, we meet on Wednesdays at the Missouri Baptist Hospital Auditoriums. The time sometimes changes but I will post the calendar and parking directions are on FB. Now, our biggest event of the year, the STAMPEDE FOR STROKE, will be celebrating its fifth run on October 29, which just happens to be World Stroke Day. Theresa Notestine, our Race Director, has been taking this on since its inception. Every year I find out another piece of the puzzle that keeps this event going and I'll admit...it is darn daunting!!!! However, every year, it comes off beautifully. Theresa does a fantastic job on this...I know she is exhausted for weeks after...there are no words to thank her for all the things she does to make this successful. This event has become the place for Survivors to show the world that while their world has been turned topsy-turvy, there is nothing that will stop them. WE are the voice for stroke....because who can tell you what it's really like better than someone who has weathered the storm, overcome incredible obstacles, and knows they must be a WARRIOR every day!!!! Register on our website or check at your local therapy facilities for a registration form.. I'M LOOKING FOR 100 SURVIVORS!!!!! Talk to you next week...still trying to figure out how to maske this interactive! Next week....the ABC Brigade Advisory Board...the "machine" behind the ABC Brigade!!! Have a great week!!!! Kathy

BE THE STORM!

Sunday Night again.... I saw this most perfect post on Facebook today...going to try to copy it here, but the words were "Fate said to the Warrior, 'You can't withstand the storm' and the warrior replied, 'I am the storm'."After stroke, we certainly have our days of frustration, grief, anger, fear....there are a thousand more descriptive emotions I could post, but that would be a waste of all of our time. We all know stroke is a life altering event...it changes EVERYTHING...I tell everyone, you can be a stroke "victim" for about ten days...we are still reeling long after ten days, but that is when we have a decision to make....We accept that word "stroke" and its invasion in our lives and then we have a choice to make. You can decide "I've had a stroke, my life as I knew it is over, I think I'll curl up in a ball in the corner"...OR 'I've had a stroke, my life as I knew it is over, so I need to find a way to LIVE my life fully, even if it means making changes...even if it is the hardest darn thing I've ever done. So, remember, you are NOT a stroke "victim" because stroke victims are not with us...you are a survivor!! I've heard/seen/been told, "Don't let this stroke define you". Every life experience we have in life "defines" us. It is what we do with those life experiences that determines who we are, who we always were.... With stroke, we conjure up courage we never knew was in us; we have to practice patience (something we might not be really good at anyway); we are more determined in our efforts to recover than we ever were on any new venture...We become aware that we are stronger, More fierce, more sensitive and empathetic than before this "perfect storm" (defined in Wikipedia as "perfect storm" is an expression that describes an event where a rare combination of circumstances will aggravate a situation drastically.[1] The term is also used to describe an actual phenomenon that happens to occur in such a confluence, resulting in an event of unusual magnitude.") landed on us. So, I say, you can develope courage (in the face of great fear) and perseverance (in the face of incredible fatigue) and YOU BECOME THE STORM!!

I'm back!

Hi Everyone!!! It has been quite some time since I've posted here. The ABC Brigade Advisory Board (our engine) had a great working meeting this summer and one of the things I promised to do was to write in this blog weekly. So....it has been quite a while but time to fulfill that promise. As you see on our website, the ABC Brigade is committed to stroke education, prevention, and especially living life post-stroke!!! We will be updating our website soon to make it easier to navigate for you. We will have a listing of all stroke support groups in the area along with other available resources. We are also on Facebook as the ABC Brigade! Our biggest event of the year is coming soon...The 5th annual STAMPEDE FOR STROKE is being held this year on October 29 (WORLD STROKE DAY) at Tower Grove Park. Registration is right here on this website. Theresa Notestine, our Race Dirtector, has been running this event for this five years, and she does one crazy fantastic job! She is a physical therapist and a runner so she knows how to get the job done!! Our first year we had about 250 people...23 of them were survivors. Last year we had about 600 and 82 of those were survivors...WE WANT 100 survivors!!! Please join us that day and be a voice for stroke!!!! See you next week....I promise!!!