Today's Hero: Bobby Brannigan

November 21. We are happy to introduce you to Bobby Brannigan - our Hero on this clear and sunny Friday. Bobby has been part of this journey, keeping tabs on Ben's progress since the early days in New England. Not only has he been helping us to spread the word of 2175 through Internet Blogs and forums - but has opened our eyes to a wealth of resources and incredible stories of ALS Heroes. He pointed us toward Learning to Fall, by Eric Lowen, to the story of Stephen Heywood - and to the PatientsLikeMe website; In fact, PatientsLikeMe now maintains a Registry, "intended to help Persons with ALS (PALS) reach out to each other and stand up and be counted"; it originated as a mailing list that Bobby started.   Patients Like Me Website Patients Like Me RegistryOur Team is inspired by the work Bobby has done toward building an online community for PALS - and directing his energies toward ALS advocacy. We are eager to share with you, not only his story - but also to two videos of Bobby taking on the world of Extreme Sports: Skydiving! Not for the faint of heart. Ben and Rick hope to get the chance to meet him in person on their way back North. Our Team sends out a big thank you to you, Bobby!*It's a Beautiful Day -Don't let it Get Away*Team 2175 ---------------------------------------------------------------------------------------------------------------------------------------------- Family, friends and extreme sports helping Spruce Pine man battle ALS diseaseby Susan Reinhardtpublished July 22, 2007SPRUCE PINE - Those who've met Bobby Brannigan walk away with a piece of him. They put their troubles behind them, all because of the man in front of them. It's hard to see the wheelchair and thin, twisting limbs when the eyes of the man struggling to speak show a love for life he refuses to let a horrific illness dim.Bobby, a former carpenter and father of two from Spruce Pine, has endured Lou Gehrig's Disease, also known as Amyotrophic Lateral Sclerosis, for nearly 14 years. It is the same illness that killed beloved Western Carolina football coach Robert Waters in 1988 and baseball great, Lou Gehrig. Bobby inspires others by not letting a wheelchair confine or define him. He recently went skydiving and zoomed three laps in a racecar going 165 mph around the Daytona International Speedway.He's also beat the odds, which often give a person three to five years to years from onset of ALS. And he's beat the blues, the "why me's?" and other negative feelings that can overtake a person when they're aware of how their lives will end. ALS kills the motor neuron cells in the brain and spinal cord, which causes the brain to lose the ability to control the muscles in the body, leading to paralysis and problems swallowing, eating and breathing.The person's mental capacity remains completely intact, meaning victims are isolated and awake, alive with the knowledge that they are trapped inside their own bodies. What frustrates Bobby and others with ALS, is that since Gehrig, the famous first baseman for the New York Yankees died from the disease nearly 70 years ago, little has been learned or discovered.He wants the world to know about this illness. And he wants the government to start keeping track of it through a national registry so that a cure might one day be discovered. Most days he spends at the computer, conversing with others who have ALS and trying to get legislation passed and awareness raised.But a man can only stare at a screen for so long. Even a man in a wheelchair. This is where extreme sports enter the picture. When an invitation came to attend a relative's retirement party in Boynton Beach, Fla., the Brannigans packed up and hit the road. The family hadn't had a vacation in years, not since Bobby became wheelchair bound seven years ago.Becky Brannigan, Bobby's devoted wife of 30 years, said only the hand of God was possible in the unexpected events that turned an everyday trip into a life-changing experience.Bobby's storyI first learned about Bobby Brannigan, 53, from a relative who wanted me to know that even during the worst of conditions, he has found reason to enjoy life.He sent pictures of Bobby skydiving in Florida and racing at the Daytona International Speedway.He and Becky drove into Asheville one day last week to enjoy one of their favorite downtown restaurants. Bobby doesn't let a food tube stop him from trying to eat and drink his favorite foods and beverages. Bobby's First Time Skydiving - Flordia Bobby's 2nd Skydive! FloridaFor years prior to the illness, the couple led a full life with their children, Betsy, 23, and Rusty 19. They rode Harleys and attended races. Becky worked for the school system and Bobby built houses, carved wood and sculpted copper. One afternoon about 14 years ago, he was building a house and noticed he lacked strength on his left side. Days passed and his stamina didn't return. For a year, he went to hospitals in Spruce Pine, Asheville, Chapel Hill and finally, Emory University in Atlanta, where he was diagnosed with ALS. When doctors said, "Lou Gehrig's," the family felt stunned. "They told him he had three to five years," Becky said, her eyes on her husband who was determined to swallow his drink through a straw. Why he's been around for 14 years instead of the average four is a mystery to the family.Becky said years ago, Bobby was in a blind study for those with ALS and given medication. Some in the study received the real deal and others a placebo. Since then, Bobby's rate of debilitation has seemed slower than typical. "Only 5 percent have survived this long," she said, reaching out to touch her husband. "He just didn't give up."Staying activeBobby said his limitations sometimes get him down, but with a family and circle of friends as supportive as he's been blessed to claim, it's hard to stay depressed."I have never asked 'Why me?'" he said, sometimes struggling to form the words. "I have a good life. Lots of prayers and great friends."His children, though grown, have chosen to stay with their parents in the home. Becky is her husband's main caregiver, in addition to working a job in the superintendent's office for Mitchell County Schools. "Sometimes I get burnt out," she admitted. "I hate the disease. I go for a Harley ride on the Blue Ridge Parkway to relieve the stress."The Brannigans try to stay as active as possible, attending MerleFest and traveling recently to Florida where Bobby had those two experiences he'll never forget. "We were on our way and went by the Daytona race track and heard the motors," Becky said. "We stopped to watch for a while and Jeff(his brother) went and arranged a ride-along.""It was a dream come true," Bobby said. The next week, another opportunity presented itself. Bobby had always wanted to skydive, and got the chance in Sebastian, Fla. "It was great, unreal," he said of the experience he's planning to repeat. What he'd love to do next - besides get the national registry of ALS patients passed in Congress - is head to Cape Canaveral and enjoy a zero-gravity flight, an effect like being in space. Most days he spends working nonstop in front of the computer, trying to create national interest and attention to Lou Gehrig's disease, and realizing too little is being done to treat or conquer the illness, he said. Though each day is challenging, Bobby isn't about to give up. "I'm all about awareness, and raising it," he said. "The more people know about this disease the better because at some point, the right person will be moved to do something."As he left the restaurant, I noticed a small "license" plate on the back of his wheelchair.It was his message to this disease."2 fast 4 u," it read.So far, he's proved it right.This is the opinion of Susan Reinhardt, who can be reached at SReinhardt@CITIZEN-TIMES.com.This year, the U.S. Congress has an opportunity to help our nation make progress in the fight against Lou Gehrig's Disease by passing legislation to create a nationwide ALS (Amyotrophic Lateral Sclerosis) registry, which would help identify the incidence and prevalence of this illness in the United States and collect important data needed to help find a cure. For information to amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry go to http://www.theorator.com/bills109/s1353.htmlBobby is instrumental in various Web sites devoted to the disease, including spearheading the registry for www.patientslikeme.com/registry.----------------------------------------------------------------------------------------------------------------------------------------------     Article in the Brick by Brick Newsletter, 7/4/07  Normal 0 false false false MicrosoftInternetExplorer4 st1\:*{behavior:url(#ieooui) } /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} Home of the Ultimate Awareness Tool | Where Advocacy and Awareness Continue  You Know Bobby & Becky Brannigan   This Harley riding enthusiastic couple has been married for 30 yrs, home is the small town of Spruce Pine. Bobby has been coping with ALS since 1994 and is one of the early ALS advocacy pioneers. Becky works full time for the school system and as the caregiver she counts on their two children, daughter Betsy 23, son Rusty 19. Both are a great help and have a real understanding of living with ALS in their home. Bobby has been instrumental in the develepment of the web site, Patients Like Me. He mastered copy and paste years ago and has recorded more than1300 posts on Neurotalk Communities. Over those years he has helped us cope with ALS and continues to have the spirit to grab additional handfuls of life. Let's say one day you get really sick of the computer and your powerchair. Bobby did, he turned to his caregiver and said, "Lets go Skydiving"! Heck, I can fall out of a plane, no problem. Bobby & Becky Brannigan   That is exactly what Bobby did and it was off to the airport. Bobby suited up and jumped tandem with Sebastian Sky Dive. Located in Florida, this group is skilled at jumping with disabled people. When you see the photos the proof is in his eyes. Wait, this story goes on! Bobby turns to Becky, and says "Lets go to Daytona and take a ride in Tony Stewart,s car! Guess what? Tony Stewart,s car was not available but Bobby was the first to say, "how about Dale's #8?" With racing suit, fire cap and helmet the guy from North Carolina was about to do 175 mph., a real man of steel. Stay tuned sports fans, next plan is a side car for the Brannigan's Harley.  Thank you Bobby and Becky for sharing your adventure. Hey, Steven Hawking, Weightlessness? http://march-of-faces.org/ Just in case the small picture above didn't do it justice...here's a larger version.  ---------------------------------------------------------------------------------------------------------------------------------------------- Please donate $1 to 2175 for ALS...4 DAYS TO SPRINGER MOUNTAIN! ----------------------------------------------------------------------------------------------------------------------------------------------