Knuckle-Up Newsletter
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Knuckle-Up Newsletter July 2014 SURGERY FIXES THE PROBLEM...SUPPORT HELPS THE SurgeryRECOVERY only prevents a future bleed so the brain can heal itself as best it can; nothing done during the surgery heals the damage already done to the brain. This is why support is such a vital part of recovery!!! Members of support groups receive help by learning new coping this issue strategies, relating personal experiences, obtaining information from health professionals and establishing social networks. Page 1 TJNF Support Groups provide many and varied benefits, including mutual support, Support is Vital understanding and acceptance, a sounding board, non-judgmental listening, an information source, validation of feelings, role modeling and much more. Our groups offer a safe haven for patients, families, friends and caretakers to be among others in similar situations where Page 2 they can share their fears, challenges, successes and failures in an atmosphere where they are loved and accepted by all. Our meetings address issues such as depression, social Donna’s Diary reintegration, coping with disabilities, nutritional brainpower, exercising your brain and much more. Page 3 TJNF empowers members by offering information and emotional support, which is Knuckle Ball 2014 monumental in promoting good health and an improved quality of life. The Joe Niekro A Walk in the Park...Brains Foundation Support Groups can play a vital role for both survivor and family members by providing emotional and moral support. TJNF Support groups help others realize that Matter recovery is possible and designed to motivate attendees to follow wellness plans and make a difference in the community while creating a forum of mutual acceptance, understanding and self–discovery. Page 4 For more information about our support groups or to establish a JNF Support Group, contact Chen’s Corner - Brain [email protected]. Anatomy 101 JOIN OUR ONLINE SUPPORT GROUPS Page 5 Ladies Lunch at Kingwood JNF Fantasy Camp PARENTS OF A BRAIN ANEURYSM/AVM Page 6 BRAIN ANEURYSM/AVM LIVE SUPPORT FORUM CHILDREN SUPPORT GROUP This fast growing group page on Facebook is This chat room is a safe haven to be among Board of Directors continuously connecting survivors and family members other parents or family members in similar from across the globe, offering support, friendship and Contact Us situations to express fears, challenges, guidance in all aspects of dealing with these fatal successes and failures in an atmosphere in conditions. which everyone is loved and accepted by all. Click here to see a complete list of our support group locations. Tuesday, July 8, 14 JNF THE TRAIL FROM WHERE? D’s D by Donna Poole - JNF Patient Advocate “Begin Trail 1.” The sign looked inviting, and the trail map rated it only moderately difficult. My husband, John and I love hiking. We hiked very strenuous trails - when we were younger, and in shape, and when I didn’t have an aneurysm. I had recently visited my neurologist complaining of vertigo (room spinning dizziness) and double vision. She, fearing I had suffered another stroke, had sent me for tests shortly before we left to go camping. We really weren’t concerned. My first stroke had been mild, and if this was a second one, it wasn’t affecting me. Full of optimism we started down Trail 1. Down we hiked to the bottom of the lovely canyon. Then we began the strenuous climb back to the rim. “Look!” John said encouragingly, “We’re almost to the top!” “Hey! We did it!” I said. That’s when we noticed the path taking a downward turn. Back to the bottom of the canyon we trudged again, getting hotter, sweatier and more disgusted by the minute. “This,” I announced, “is the trail from hell.” There was nothing to do but keep trudging, keep putting one foot ahead of the other. That’s when I made a determined effort to enjoy the scenery. Instead of complaining, we began to point out lovely things we saw. Maybe it wasn’t a trail from hell. Perhaps it was even from heaven. Finally, just when I thought someone was going to have to come and carry me out on a stretcher, we saw the sign, “End Trail 1.” Soon after that camping vacation I returned to my neurologist to get test results. “Good news,” she said, “you haven’t had another stroke. Bad news. Have you ever heard of a brain aneurysm?” I had an instinctive feeling this aneurysm trail was not going to be easy or even moderate, so I got online to research. First I had to figure out how to spell “aneurysm.” I was intrigued when I found The Joe Niekro Foundation Aneurysm/AVM Support Group. Here, I found real friends and now I welcome other nervous newcomers who don’t know how to spell aneurysm—but just learned they have one. Some in our group have a more difficult trek than others, but we don’t compare or compete. We encourage each other, and point out positives on the path. We pray for each other and make each other laugh through tears. Sometimes we give each other a needed kick in the backside. Together we try to raise awareness of aneurysms and AVMs so others do not need to hike our trail. In our Joe Niekro Foundation online support group, people sometimes get too tired to keep going. When that happens they can sit on a bench and cry and even have a pity party—but only for a while. We don’t want any of our aneurysm/AVM family quitting. Soon another survivor comes along and says, “Get up. Keep putting one foot ahead of the other. You can do this!” One hand reaches down; another hand reaches up, and we keep hiking together. And whether our section of the trail looks like it’s from heaven or hell, we are there for each other, survivor strong. Click here to read Donna’s amazing story or survival. Every Dollar Counts - Join our Mission Tuesday, July 8, 14 JNF GET READY TO “PITCH” ANOTHER GREAT EVENING The Joe Niekro Foundation is pleased to announce some of this year’s participating athletes at the 5th Annual Knuckle Ball…A Pitch for Life, on September 20th, at Hotel Zaza. Attending and mingling with the guests, to name a few, will be: Nolan Ryan (Hall of Fame Inductee – 1999) – MLB Pitcher – New York Mets, California Angels, Houston Astros, Texas Rangers (1966-1993) Bert Campaneris – MLB Shortstop – Oakland Athletics, Texas Rangers, California Angels, New York Yankees (1964-1983) JR Richard – MLB Pitcher – Houston Astros (1971-1980) Dave Bergman – MLB 1st Baseman - New York Yankees, Houston Astros, SF Giants and Detroit Tigers (1975-1992) Bill Dawley - MLB Pitcher - Houston Astros, Chicago White Sox, St. Louis Cardinals, Philadelphia Phillies and Oakland Athletics (1983-1989) Jeff DeWillis – MLB Pitcher - Toronto Blue Jays (1987) Jon Warden – MLB Pitcher – Detroit Tigers (1968) John Egan – NBA Point Guard - Detroit Pistons, New York Knicks, Baltimore Bullets, LA Lakers, Cleveland Cavaliers and Houston Rockets (1961-1972), NBA Coach - Houston Rockets (1973-1976) Chester Pitts – NFL Offensive Guard – Houston Texans, Seattle Seahawks (2002-2011) The evening, emceed by KHOU TV Personality and brain aneurysm survivor, Deborah Duncan, will feature a festive reception, silent auction, formal dinner, LIVE auction and the opportunity to mingle with some of sports greatest legends. Bobby Tudor will be honored as the Joe Niekro Humanitarian of the Year for his outstanding commitment and contributions to the Houston community. A portion of the funds from the event will be granted in the name of Bobby Tudor, to a Houston neurological department of his choice. For more info, visit www.joeniekrofoundation.org/knuckleball. A WALK IN THE PARK...BRAINS MATTER Join us for the 1st Annual Walk in the Park...Brains Matter Walk-a-thon, September 28th at Indian Steele Park in Phoenix, AZ. Come and be part of a one mile walk that will raise funds to support brain aneurysm, AVM & stroke research and patient support services in Arizona. This event allows patients and family members affected by these conditions, the opportunity to spread awareness and educate the community on the risk factors,causes and treatments of these life-threatening disorders. Walk in honor or memory of a loved one, show your support for the cause and burn a few extra calories while doing so! Registration is $30 and includes a goody bag and t-shirt. Click here to get signed up today. facebook.com/Phoenixbrainaneurysmavmwalk Shop Amazon Smile and Amazon will make a donaon to JNF! Tuesday, July 8, 14 BRAIN ANEURYSM ANATOMY 101 CHEN’S CORNER by: JNF Medical Advisory Board Member, Michael Chen, M.D. A useful understanding of your brain aneurysm, management options as well as what the future holds takes a little bit of homework. This may be the first time you have ever read about brain diseases. As with many other disciplines, there are a few basic terms and concepts that should be understood prior to any type of meaningful conversation with your physician. Brain arteries: These are the pipes that transport blood pumped by your heart to your brain. As you can imagine, they are lined with a muscular layer to help maintain the pressure of the blood so that the furthest regions of your brain can get a steady stream of blood. The cells that make up the wall of the artery are not static. In fact, these cells are constantly growing and remodeling in response to the pressure from the blood within it to attempt to maintain, as much as possible, a smooth cylindrical shape. Brain veins: Veins are thin walled vessels which lack a muscular wall that drain blood after it has passed through tissues or organs.