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 – New York Mets, California Angels, , Texas Rangers (1966-1993) Bert Campaneris – MLB Shortstop – , 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, , St. Louis Cardinals, and Oakland Athletics (1983-1989) Jeff DeWillis – MLB Pitcher - (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. After they have passed through tissues or organs, they lose oxygen and are under very little pressure as it returns it to the heart to get pumped to the lungs. Veins outside the brain are usually more visible as blue vessels near the skin surface.

Brain aneurysms: When the cells that line the walls of arteries are not able to effectively maintain a smooth, cylindrical shape, the blood pressure within the arteries causes a bulge. Over varying amounts of time, the bulge may grow into a sac, or an aneurysm. Therefore, you are generally not born with brain aneurysms. As you might expect, they tend to occur on the outer curve of vessels or at branching points. Furthermore, because of the anatomic configuration of the major arteries at the base of the brain, aneurysms occur in fairly predictable locations. The reason why we worry about aneurysms is because the wall lacks the normal muscular layer which may allow spontaneous rupture when the force of the pressurized blood in the artery exceeds the tensile strength of the thinned artery wall.

Subarachnoid Hemorrhage: The major brain arteries and brain are normally suspended within the skull, bathed in spinal fluid. This is anatomically referred to as the subarachnoid space. The spinal fluid is clear and plays an important role in maintaining normal function in the brain as well as serving a protective roll. The most common location for brain aneurysms to bleed is within this subarachnoid space. Part of what makes bleeding from aneurysms so devastating is because brain arteries have no additional protective tissues surrounding it, and are simply ‘floating’ in this subarachnoid fluid space. Furthermore, in adults, the skull represents a fixed volume, such that any further increase in volume in the skull, in this case blood, causes a rapid, dangerous rise in pressure within the skull. THE DATE - A Walk in the Park...Brains Maer - Sept. 28th Tuesday, July 8, 14 JNF JNF SUPPORT GROUP AT KINGWOOD MEDICAL CENTER HOSTS EDUCATIONAL SERIES Kingwood Medical Center hosted its 2nd Annual Ladies Night Out, Love Your Brain and Ladies Lunch and Learn, Love Your Brain to raise awareness of stroke risk factor management and further engage the community on how to recognize and respond to stroke warning signs by acting FAST. On display at Kingwood Medical Center throughout the day was the AmeriBrain Interactive Exhibit, the world’s most realistic walk-through inflatable brain. The big brain features include anatomical representations of the major brain structures; location of areas of the brain responsible for movement, hearing, touch, personality, balance, etc.; and representations of a brain aneurysm.

Both events gave community women (and men) the opportunity to tour the brain exhibit and participate in a Q&A session with Kingwood Medical Neurologists Christopher Loar, M.D., Wendell Grogan, M.D. and Uzma Ali, M.D., Neurosurgeon Imran Fayaz, M.D., NeuroRadiologist Robert Case, M.D. Emergency Physician Randall Sharer, Pharmacists Mallory Gessner and Allison Lau, Neuro Nurse Practitioner Ilse Prado and Stroke Coordinator Dianne Price, RN.

Hosting these events is one of many ways the Brain & Spine Center at Kingwood Medical Center increases awareness about the risk factors and symptoms of stroke and cares for the community. Thank you Kingwood for this fantastic display of community education.

This JNF support group for aneurysm/stroke survivors and loved ones, is held at 6:00PM on the second Monday of every odd month in Kingwood Medical Center’s Community Room. For more information or to register for this free event, call 281-348-8975 or click here. Refreshments are served.

JNF FANTASY CAMP SPOTS ARE FILLING UP FAST - NOVEMBER 2-7, 2014

Don’tFacebo omissk.com /thisTheJo erareNiekro opportunityFoundaon to learn the subtle nuances of America’sTwier.com/j oPastimee_niekro_or gfrom Hall of

FamersLinkedin.c oandm/com MLBpany/j ogreats!e-niekro-foundaon We’re looking for a select group to be a part of this experience, featuring three days of baseball, plus an 18-hole golf scramble.Joeniekro.wor d pCashmanress.com Field, home of the AAA New York Mets is where ourYo campersutube.com/us ewillr/nn ifindekro their very own personalized locker, complete with home and away uniforms, bats, balls, a team trainer and clubhouse attendant, plus all the extras needed to play like a pro. To find out more or to register, click here.

Stay Connected with JNF - Visit our Facebook page, Follow us on Twitter, Subscribe to our blog, check out our You Tube Channel and sign up for our newsletter! Tuesday, July 8, 14 www.joeniekrofoundaon.org www.joeniekrofoundaon.org www.joeniekrofoundaon.org Board of Directors Executive Director - Natalie Niekro The Joe Niekro Foundation was established in 2008 in honor of the Vice President - Gary Simms founder’s father, Joe Niekro, who lost his life from a sudden ruptured brain Chairman of the Board – Dave Bergman aneurysm on October 27, 2006. The astonishing lack of pubic awareness Treasurer - Larry Simon and under-support of research of such a widespread and often fatal Rachel Pekas - Secretary condition led to the launch of a crusade to educate and encourage Suzanne Antonelli Kimberly Chapman awareness about cerebral disorders. The Joe Niekro Foundation is Christopher Fox, MD committed to supporting patients and aiding in the research and treatment Bill Michels Linda Michels of brain aneurysms, AVMs and hemorrhagic strokes. Our goal is to raise Jeremy Pekas awareness about the risk factors, causes and treatments of these Luke Woosley conditions while helping support the advancement of neurological Medical Advisory Board research. We provide patient education and advocacy, support for patients Felipe Albuquerque, M.D. and families, and develop awareness programs and educational materials Gavin Britz, M.D., MPH for hospitals, clinics and other institutions nationwide. Robert D. Brown, Jr, M.D., MPH Michael Chen, M.D. Orlando Diaz, M.D. Every donation matters - every dollar counts. The Joe Niekro Foundation Donald Frei, M.D. is a registered 501 (c)3 which means your donations are 100% tax Robert G. Grossman, M.D. Hani Haykal, M.D. deductible. Joshua Hirsch, M.D. Richard P. Klucznik, M.D. "The Joe Niekro Foundation isn't a clinically trained organization and all therapy regiments Italio Linfante, M.D. brought before the support group are informational in purpose only and do not represent an Cameron McDougall, M.D. represent an endorsement or recommendation of any kind." Kristin M. Mascotti, M.D. Philip Meyers, M.D. Nedaa Skeik, M.D. Michael Ulrich, M.D. Join Our Mission Ronald E. Woosley, M.D. Joseph Zabramski, M.D. Y. Jonathan Zhang, M.D.

Click here to subscribe to the Knuckle-Up Newsletter

Join our Patient Support Group page • Join our Parent Support Page

The Joe Niekro Foundation • P.O. Box 2876 • Scottsdale, AZ 85252-2876 • 602-318-1013 www.joeniekrofoundation.org • [email protected]

Tuesday, July 8, 14