Moving Closer To A World Free Of Multiple Sclerosis
Transcription
Moving Closer To A World Free Of Multiple Sclerosis
2007 Issue 3 Chapter Calendar p.2 Nerve Pain p.4 Research Study p.8 Cool Tips p.9 Ways to Give p.10 2007 Issue 3 Self-Help Groups p.12 National Conference p.16 Summer Utility Assistance p.19 Development p.22 Resources p.23 Lone Star Chapter Moving Closer To A World Free Of Multiple Sclerosis The National MS Society has a new voice and with it, a new “attitude” that wants to do something about MS, now. We are committed to building a movement by and for people with MS that will move us closer to a world free of this disease. This means doing business a little differently than before, and it also means a refocused energy and commitment to ending MS. After significant discussion and thought, we have made the decision to combine our chapter operations with the North Central Texas Chapter. Moving forward, the North Central Texas and Lone Star Chapters will operate as one, unified voice and chapter. We will be known as the Lone Star Chapter and will be responsible for delivering on our mission over much of the State. The decision to combine our chapters is good news for people with MS and the greater MS community. By consolidating the two chapters, we are able to leverage our combined resources and expand programs and services for people living with MS and their families. We can create an even stronger combined team to move us even closer to a world free of multiple sclerosis. We welcome the opportunity to work with our new colleagues, volunteers and clients and recognize that we are all one family focused on the same goal. Both organizations have much to be proud of and we will do more together. FaceofMS.org Some highlights of the com- Tell your story and bined organizations accom- put a face on MS. plishments include: Continuation of our pledge of $3 million to the Promise 2010 Campaign, focusing on four targeted areas of MS research; Increasing the revenue by 22% in FY ’06 to $17.1 million raised which allows us to make unprecedented additional contributions to research; Enhanced client service through interaction with people with MS, especially wellness programs which have been a long term strength of the North Central Chapter; and A larger focus on rural markets. As we continue to search for the right balance between care and cure, we will continue to offer information, education and services through a variety of channels to address the wide range of challenges facing those living with MS. At the same time, we will continue to provide the necessary funds for research. Mark Neagli, the current Lone Star Chapter President, will serve as the president of the combined chapters. He is supported by a combined cast of dedicated staff and volunteers that are changing the way we look at this disease; and together all of us are moving towards ending MS and not fighting against it. continued on pg.2 2007 Issue 3 Publication of the National Multiple Sclerosis Society Lone Star Chapter 8111 N. Stadium Dr., Suite 100 Houston, TX 77054 Houston (Headquarters): 713-526-8967 or 800-323-4873 Austin 512-495-9901 Corpus Christi: 361-225-2342 Dallas: 214-373-1400 San Antonio: 210-494-5531 or 800-683-1627 Chairman - Henry Noey First Vice Chairman - Jim Tidwell Secretary - Gerald Merfish Treasurer - Nick Lomonte Chair Emeritus - John R. Pearson Clinical Advisory Committee Chair Elliot M. Frohman, MD, PhD Chapter Programs Committee Chair George J. Hutton, MD Chapter President - Mark Neagli The National MS Society does not endorse specific products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National MS Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National MS Society recommends that all questions and information be discussed with a personal physician. Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. National MS Society medical advisors recommend that people with MS talk with their health care professional about using one of these medications and about strategies and effective treatments to manage symptoms. If you or someone you know has MS, please contact the Society today at www.nationalmssociety.org or call 1-800-FIGHT-MS to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS. L O N E S TA R C H A P T E R Calendar MS Walk Katy Sept. 8 MS Walk Kemah Sept. 8 MS Walk & Fun Run The Woodlands Sept. 8 MS Walk Downtown Houston Sept. 9 NexBank MS Walk Presented By Subway Waco Sept. 22 Family Discovery Camp Burton Oct. 5-7 MS Walk Austin Area Oct. 14 Valero MS 150 Presented By H-E-B San Antonio – Corpus Christi Oct. 20-21 National Conference Dallas Oct. 24-26 Annual Meeting & Research Symposium Early Nov. Chapter Merger- continued from pg.1 Over the next several months you will continue to hear about exciting updates as a result of our chapters joining together. If you have any questions, please do not hesitate to contact Talley Gregg at 713.526.8967 and press 2. Also, please visit our website: www.nationalmssociety.org/txh for the latest chapter news. Best regards, Henry Noey Chair, Board of Trustees Lone Star Chapter © 2006 National Multiple Sclerosis Society, Lone Star Chapter 2 Toll-Free Number: 1 800 FIGHT MS LIVING WITH MS THE MS TECHNOLOGY COLLABORATIVE: MAKING TECHNOLOGY WORK FOR YOU The new MS Technology Collaborative wants to raise awareness of how technology can help people with MS live well. It wants to break down barriers for those who aren’t comfortable using technology and educate people on how to choose, use, and maximize the impact of technology on their lives no matter how MS affects them. The collaborative plans to Explore how people with MS currently use technology, including computers, cell phones, PDAs, and Web communities; Identify techniques and applications that can solve individual problems; Increase everyone’s awareness of available solutions; and Develop new solutions to fill in the gaps. Visit mymsmyway.com to learn more. Access for all The MS Technology Collaborative is a unique initiative by the National MS Society, Microsoft, and Bayer Healthcare Pharmaceuticals, a division of Bayer Schering Pharma AG (formerly Berlex). The three partners are creating a future where technology can be used by anyone living with MS. That includes people who have blurred vision, uncooperative fingers, iffy memories. It includes those who are newly diagnosed or have progressing MSrelated symptoms. The MS Technology Collaborative is founded on the belief that improved technology can help people with MS move their lives forward. From telephones to global positioning systems, technology provides access to the world— offering entertainment, education, employment, and personal connections. Technology has even more potential for those living with MS. Health-care systems will increasingly use computer communication for partnerships in selfcare and health education. So computer use may soon be a link to healthy living with MS. Preparing the way Before mymsmyway.com went live, the collaborative first formed a steering committee of diverse people living with MS across the country. That committee is providing ongoing input. Next, the collaborative fielded a nationwide survey to get the big picture into focus: What is the role of technology in the lives of people with MS? The survey asks pointed questions about how people currently use technology, what limitations they experience, and whether technology helps them to live better. Survey results will be posted on both mymsmyway.com and the Society’s Web site as soon as analysis is final. The MS Technology Collaborative hopes to develop a personalized, interactive Web experience that can deliver information tailored to the needs of a specific individual. Just how that will work is very much a work in progress. Be part of the future. Visit mymsmyway.com today, and join in. COOL TIPS FOR HOT DAYS Avoid the hot seat Keep your car cooler with reflective shades for the windshield and fabric car seat covers. Available at auto supply stores. Visit our at: www.nationalmssociety.org/txh VisitWebsite our Website at: nationalmssociety.org 3 SUMMER2007 LIVING WITH MS Nerve pain is different A ll pain is transmitted by nerves, but nerve pain is different. “Phantom limb pain” is a vivid example of “neuropathic” or nerve pain. This type of pain originates in the central nervous system in injured nerve pathways, not in the bones or muscles. A person with phantom limb pain feels pain in a body part that was amputated in the past. MS lesions can injure nerve pathways and produce neuropathic pain—or unpleasant sensations called dysesthesias (or “di-es-THESE-ee-ahs”). The burning, aching, stabbing, prickling, COOL TIPS FOR HOT DAYS Water and …. Keep a plastic water bottle half filled in the freezer. Top it off and you’ll have a drink that stays cool all day. Herbals teas—fruity blends, peppermint, and ginger—are good chilled and have little or no calories if you make your own. Avoid sugary drinks. They leave you thirstier—and heavier too, because of all the calories. Drink fruit juice the light way by extending with ice, water, or a fruity herbal tea. or itching may start and stop or drag on. MS lesions may also cause “allodynia” (“Al-oh-DIN-ee-ah”)— which is pain from something that shouldn’t be painful. A soft touch, the weight of bed covers, even a cool breeze can be the trigger. Neuropathic pain is not soothed by the overthe-counter medications that work on muscle pain. Even powerful prescription medications such as Percocet, Lortab, Oxycontin, or Darvocet are not effective for this kind of pain. Instead, physicians need to prescribe medications that work on nerves. They may be anti-convulsants (such as Tegretol, Dilantin, or Neurontin), antidepressants (such as Elavil), or new drugs approved for diabetic pain (such as Lyrica or Muscle and bone pain happen too People who have difficulty walking may develop pain from the stresses placed on muscles, bones, and joints. Sitting also stresses body parts. Muscle and bone pain responds to physical therapy—and to standard pain medications. A person with MS might have more than one kind of pain. The first step to pain control is a professional diagnosis. *Funded by the Neuropathic Pain Network and Pfizer, Inc. 4 Toll-FreeNumber: Number:11-800-344-4867 Toll-Free 800 FIGHT MS (continued opposite) LIVING WITH MS Nerve pain is different (continued) Cymbalta). It’s not uncommon to try out drugs to find what works best. Global survey shows communication critical to pain relief A seven-country survey by Harris Interactive* shows that doctor-patient communication is essential for diagnosis and treatment of nerve—or neuropathic— pain. The survey found that many general practitioners (family doctors) did not find it easy to recognize this type of pain. The survey also found that people with nerve pain waited from 5.7 to 19.5 months Try nondrug approaches right away While you and your physician investigate meds, pain specialists say it’s smart to add complementary therapies right away. Nerves can become habituated to pain, making the pain harder to control. Consider relaxation techniques, meditation, guided imagery, selfhypnosis, prayer, or music therapy. Joining a support group, pursuing a hobby, or having a good laugh watching comedy videos are also known to minimize pain. Experiment with applications of heat, cold, or pressure. Try massage, acupuncture, yoga, tai chi, or physical therapy. Oddly enough, neuropathic pain does not mean the MS is getting worse. But it could make life worse. before talking to a physician about it. Many believed the pain would go away by itself. Language matters Success involved two-way communication. People who were able to describe intensity, duration, location, and how a pain feels—and physicians who asked for these descriptions—were far more likely to have successful outcomes. They used descriptive words like dull, throbbing, stabbing, numb, achy, prickly, burning, pins and needles, and shock-like. The survey contacted approximately 700 people diagnosed with nerve pain because of MS, diabetes, herpes, cancer, stroke, or other conditions and 700 physicians in Finland, Germany, Great Britain, Korea, Italy, Mexico, and Spain. Tell your doctor The National MS Society’s Professional Resource Center Clinical Bulletin, “Pain in Multiple Sclerosis” by Heidi Malone, PhD, RN, can be downloaded at nationalmssociety.org/PRC. It includes charts on pharmacological management and an extensive bibliography. COOL TIPS FOR HOT DAYS Snackin’ cool Smoothies and slushies pack a cool nutritional punch. In a blender, combine banana, melon, strawberries, or peaches with low-fat milk or fruit juice. Then pile in the ice. Add a few drops of vanilla for an exotic touch. VisitWebsite our Website at: nationalmssociety.org Visit our at: www.nationalmssociety.org/txh 5 SUMMER2007 M O N E Y M AT T E R S Filing for SSDI Benefits I If you have MS and are unable to work due to an MS-related disability and/or other conditions, you may be entitled to Social Security Disability Insurance (SSDI) benefits. To receive these benefits, you must have worked at least five of the 10 years immediately before the disability and paid FICA taxes. The disability or impairments must be expected to last for at least 12 months. Visit your doctor and let her/him know you plan to apply for SSDI benefits. Offer your doctor the Society’s template letters to make the documentation of your symptoms easier. (Go to nationalmssociety.org/SSDI and scroll down to “Worksheets and Sample Letters.”) Step Three: Strengthen your chances Don’t hesitate to ask for Step One: Get familhelp from an SSA repreiar with the process Contacting the Social sentative, a family memSee “Loosening the SSDI Security Administration ber, staff in your doctor’s Knots” in the April-May office, or a knowledge2007 InsideMS. Go to Toll-free: 800-772-1213, able person at the nationalmssociety.org, 7 AM to 7 PM, M–F Society. click on Library in the Toll-free TTY: 800-325-0778, Don’t delay if you gray menu bar in the 7 AM to 7 PM, M–F can’t complete certain upper right hand corner, On the Web: www.ssa.gov general information on and then on InsideMS in Mailing address: Social Security the application. the box on the left-hand Administration, Office of Sufficient medical inforside—or call us for a Public Inquiries, Windsor mation is the most copy. Park Building, 6401 Security important. For a more detailed Blvd., Baltimore, MD 21235 The best source of review, check out the your medical informaSociety’s new SSDI tion is your doctor. Be sure your doctor is Guidebook for People with MS at aware of all of your symptoms. nationalmssociety.org/SSDI. If you do not have Web access, call us. Step four: The waiting game The exact requirements for SSDI are Recent data indicates that nationwide detailed in the Social Security roughly 62% of initial claims for SSDI Administration’s Blue Book (SSA No. were denied, and that most applicants 64-039, or www.ssa.gov/disability/ who went on to file a written appeal professionals/bluebook). called the "reconsideration" were also turned down. Only 16% of these secondStep Two: Get prepared level claims were approved. Keep a detailed journal of your MS sympThe third level provides a face-to-face toms and how they limit your ability to hearing before an administrative law work. (continued next page, bottom) 6 Toll-Free Number: Number: 11-800-344-4867 Toll-Free 800 FIGHT MS ADVOCACY MS ACTIVISTS’ INFLUENCE GROWS More members, more calls Our nationwide network of MS activists has increased by more than 80% this year. That means members of Congress have heard from more MS activists on more MS issues than ever before. MS activists made more than 64,000 calls and e-mails to their legislators so far this year. That is almost double the number of contacts made in all of 2006. Does it work? With the help of these calls and e-mails, the Lifespan Respite Care Act passed the U.S. House and Senate last year. Signed into law in December 2006, the act provides almost $300 million over five years for competitive grants for states to increase the availability of respite care services for family caregivers of individuals with special needs regardless of age. On our agenda Support for funding MS research through the Department of Defense is growing impressively. Legislators who are on one of the Appropriations Defense Subcommittees are currently being contacted. Activists will be on hand at the Iowa, New Hampshire, and other presidential primary stops to question candidates about health care, prescription drug coverage, and more. Get updates online It’s easy to get involved. Sign up at nationalmssociety.org/advocacy. We’ll send updates on news from Washington, hot issues, and ways to take action. As an MS activist, you’ll help ensure that our volunteer work, research investment, and programs are supported by laws and regulations that make sense. Become an MS activist. Join the movement. Filing for SSDI Benefits (continued) judge called the ALJ hearing. Nearly 60% of recent hearing decisions were in favor of the person seeking benefits. A final level is also available: the Appeals Council of the Social Security Administration. This rarely results in an award of benefits. Beyond this point, a person may file a complaint in the U.S. District Court. Optional: Retain a representative The law permits SSDI applicants to retain a representative on a contingency basis, meaning that the fee is based on the outcome of the claim. The representative, who may or may not be a lawyer, is a professional with expertise in Social Security rules and regulations. Applicants may pay a representative out of the Social Security benefit check when the claim is approved. The fee will be 25% of the retroactive benefit, but cannot exceed $5,300. COOL TIPS FOR HOT DAYS Tax deduction With a doctor’s prescription, you can claim a new air-conditioner as a taxdeductible medical expense. VisitWebsite our Website at: nationalmssociety.org Visit our at: www.nationalmssociety.org/txh 77 SUMMER2007 RESEARCH NATIONAL RESEARCH STUDY NEEDS VOLUNTEERS The Sonya Slifka Longitudinal MS Study, sponsored by the National MS Society, has collected information from some 1,600 people with MS since 1999. Because the Slifka Study provides such valuable information to the MS community, it has just been expanded and extended for another five years. Now it needs 2,500 more people with MS. are asking for volunteers. If you are a member of one or more of these groups, please consider joining this important study. Call 1-800-305-8013. Participation involves telephone interviews every six months, plus keeping a log of your health status, the medical services and therapies you use, the money you spend on MS-related needs, and the impact MS has on your life. The calls are made in English, so volunteers need to be comfortable talking on the phone in English. All the information collected is confidential. Those who use data from the study will not be able to identify individual participants. MS researchers are already using data from the first phase of the study to identify ways to improve quality of life and manage MS symptoms more effectively. The study data also helps the Society advocate for public policies that address the issues most important to people with MS. The second phase of the study will lead to more important information about how people live with MS over time. Beverly, diagnosed in 2001 Sonya Slifka and her son Richard The Sonya Slifka Longitudinal MS Study is supported in part by a generous gift from the Society’s past National Chair, Richard Slifka, and in part by the Society’s Promise: 2010 campaign. The study is named for Richard’s mother, who developed MS when he was still a boy. The grown-up Richard Slifka has been a leadership volunteer for the Central New England Chapter for more than 25 years as well as serving on the National Board since 1988. He has generated more than $3 million in personal donations and solicitations. Specific populations with MS will be “oversampled” in this phase of the study to ensure that their experiences are adequately represented. The target populations are African-American, Hispanic, and people diagnosed with MS after September 2006. Most participants will be selected at random from the National MS Society’s database. However, to ensure that the study adequately covers people with MS who are African-American, Hispanic, and/or are very recently diagnosed, we 8 Toll-Free Number: Number: 11-800-344-4867 Toll-Free 800 FIGHT MS NEWLY DIAGNOSED GET GOING WITH TWO NEW RESOURCES Begin with MS Learn Online Fearful, depressed, confused? A person can feel all of this after an MS diagnosis. But perspective—and hope—are available in the MS Learn Online webcast Where do I begin? Newly Diagnosed with MS. Three people, with more than 30 years of living with MS between them, talk about their lives and recall their feelings at the time of their diagnosis. They discuss relationships and support, becoming one’s own health-care advocate, and the possibility of reinventing oneself while managing life with a chronic illness. To view the 23-minute webcast and explore the full roster of MS Learn Online offerings, go to nationalmssociety.org/ mslearnonline. COOL TIPS FOR HOT DAYS Dress light and loose Loose cotton blends and microfiber fabrics allow perspiration to evaporate. Try a wide-brim hat. Canvas or mesh sneakers are cooler than leather. Cool clothing Commercial cooling garments, such as vests, bra inserts, and headbands, can help you stay cool for hours. Search ABLEDATA (www.abledata.com or call 800-227-0216) or call us for referrals. Spray instead Sweat evaporating on skin is how your body stays cool. Carry water in a spray bottle and wet your shirt and hat for the same effect. Stand in front of a fan for instant A/C. New! KIP Teleconference Series The Knowledge Is Power home study program (KIP) for people newly diagnosed and their family members answers many questions. But you may still have more. KIP is beefing up by offering a series of free telephone conference calls hosted by MS experts. Neurologists and other MS professionals will answer questions on topics such as symptom management, relationships, employment, and more. These calls not only provide information, they offer a chance to interact with others who are also facing a new MS diagnosis—all from the privacy of home. Register for KIP and receive a teleconference schedule as part of this free, sixweek course. See ad this page for details. Visit Visit our Website at: www.nationalmssociety.org/txh our Website at: nationalmssociety.org 9 SUMMER2007 WAY S T O G I V E SAFE AND EASY: GIVE ONLINE “The Internet is a tremendous tool to help people join the MS movement,” said Joyce Nelson, president and CEO of the Society. ”We hope to cut administrative costs, make giving easier, and better tailor information to suit our constituents’ interests.” “Tremendous” is no exaggeration: According to a USA Today report, online donations to the nation’s biggest nonprofit organizations increased 63% from 2003 to 2005. The Society has led the way on the Web since 2001 when we first made it possible to sponsor Bike and Walk participants online. To pledge online, go to nationalms society.org and click on the heart-shaped button (“Pledge/ Sponsor a Participant”). Then use the search engine to find the person or the team you’d like to sponsor. New online opportunities The Society recently expanded its Web site to make it easy to give in other ways. At nationalmssociety.org, click on the giftbox shaped button (“Donate to the Society”) to access the Donate page. Visitors may choose: Donate Now, to safely and securely give a one-time gift to the Society. You can also search to see if your employer is one of the many companies that will match an online gift with a contribution of their own. Tributes and Memorials, to create a personal page to honor a loved one, to give a one-time contribution, or to set up 10 an automatic annual or monthly tribute or memorial gift. Workplace Giving, where you may sign up to have a regular payroll deduction dedicated to the MS movement. The payment is sent to us automatically. Planned Giving, to learn about other ways to support the Society through a will, gift annuities, charitable trusts, and more. A SPARKLING WAY TO GIVE Check out the new line of jewelry at Christopher & Banks and CJ Banks stores. There are nearly 750 stores nationwide— and this May and June they are offering the sparkling new “MS Collection.” The moderately priced earrings, necklace, and bracelet are created with genuine Swarovski crystals-and the National MS Society will receive 50% of the proceeds. Just in time for graduations, weddings, Challenge Walks, and other special summer events. For store locations, go to www.christopher andbanks.com. COOL TIPS FOR HOT DAYS Pre-cool “Pre-cooling” may lessen the heating effects of strenuous activity. Submerge in a tub of cool water for optimal benefit. Use mint soap for a cool skin sensation. For information on heat sensitivity, go to nationalmssociety.org/ sourcebook. Click on heat/temperature. Toll-FreeNumber: Number:11-800-344-4867 Toll-Free 800 FIGHT MS WELLNESS & EXERCISE PROGRAMS AUSTIN – Beginner to intermediate Yoga Class* for pain management and prevention. Noon – 1 p.m. each Friday and 2nd & 4th Wednesday. $25/month. Instructor: Rikki Dunn at 512-261-0125 or [email protected]. Bring a mat, towel or blanket. St. David’s at Hancock Center - 1000 E. 41st Street Bldg O, Suite 925 - Therapy Gym Austin, TX 78751. AUSTIN (Round Rock) –Yoga Class* for all fitness levels. 9:30-10:30 a.m. each Thursday. $10/class. Instructor: Pam Breithaupt at 512-335-8588 or 512-468-6788. Bring a mat, towel or blanket. Grace Lutheran Church - 708 Bluff Drive - Round Rock, TX 78681. CORPUS CHRISTI – Free Yoga Class for all fitness levels. 2 – 3 p.m. each Thursday. Instructor: Mary Carpenter at 361-225-2430. Bring a mat, towel or blanket. YWCA of Corpus Christi 4601 Corona, Suite 2303 - Corpus Christi, TX 78411. each Wednesday. Both at Art League Houston - 1953 Montrose Blvd. Call 713-523-9530 for information. SAN ANTONIO (Live Oak) – Free MS Yoga Journey for all levels of fitness and ages and focuses on stretching, relaxation and mild strengthening. 7 p.m. each Monday. Instructor: Jan Mayulianos at 210-658-8803. Bring a mat (preferably yoga/pilates) or towel. Northeast Methodist Hospital CHC – 3rd Floor Classroom - 12412 Judson Rd Live Oak, TX 78233. SAN ANTONIO – Free Yo Tai for all levels of fitness including wheelchair. 1 p.m. each Tuesday. Instructor: Liz Clark, PTA, CSYI at 210-860-8806. Warm Springs Rehabilitation Hospital - Health Resource Center - 5101 Medical Drive - San Antonio, TX 78229. HOUSTON – Free Yoga Class for all fitness levels. 6:30 - 7:30 p.m. each Monday. Instructor: Maria Theresia Mazzarella. Contact Lissa at 713-5268967-Press 2 for class location. Bring a mat, towel or blanket. *The content of this program was not developed by the Society, but we do wish to inform you of the class. HOUSTON – Healing Art: discover the healing power of art in this awardwinning program. 10 a.m. – 12:30 p.m. each Wednesday. Physically Challenged Healing Art: offers one of the only creative outlets in Houston outside a clinical setting for physically challenged individuals. 1 – 4 p.m. Visit our Website at: www.nationalmssociety.org/txh 11 SELF-HELP GROUPS SELF HELP GROUPS 2007 Issue 3 The Lone Star Chapter has self-help groups throughout Northeast, Southeast, Central and South Texas. We encourage you to call the self-help group of your choice before you attend to ensure that the topic meets your individual needs and to reserve a space for yourself. These groups provide an opportunity to share common experiences and concerns, receive and provide emotional support, and obtain MS-related information from your peers and professional speakers. The groups are listed in alphabetical order by city. Austin (Central) Mildly Affected 2nd Tuesday, 6:00 p.m. Lower Colorado River Authority 3700 Lake Austin Blvd. Austin, TX 78703 Jeff: 512-589-3409 Piper: 512-473-3200 Austin (Central) Wellness Group 4th Thursday, 7:00 p.m. Health South 1215 Red River Austin, TX 78701 Audrey:1-800-FIGHT-MS (1-800-344-4867)- Press 2 Austin (South) 2nd Tuesday, 6:30 p.m. Carestone Assisted Living Center 7017 Manchaca Rd. Austin, TX 78745 John or Betty: 512-447-1140 12 Bay Area/ Clear Lake/ Nassau Bay 2nd Saturday, 10:00 a.m. Gloria Dei Lutheran Church 18220 Upper Bay Rd. Nassau Bay, TX 77586 Mike: 281-334-3686 Brenham 3rd Thursday, 7:00 p.m. Trinity Medical Center Board Room 700 Medical Pkwy. Brenham, TX 77833 Dory: 979-836-9211 Bear Creek 3rd Saturday, 1:00 p.m. The Church Without Walls 5725 Queenston Blvd. Houston, TX 77084 Paula : 281-530-3857 Bryan/College Station 2nd Sunday, 2:00 p.m. St. Joseph’s Health Education Annex 3030 E. 29th St., Suite 100 Bryan, TX 77802 Sharon: 979-693-6733 Beaumont 2nd Saturday, 10:00 a.m. HealthSouth Center 3340 Plaza 10 Blvd. Beaumont, TX 77707 Virginia: 409-892-4901 Columbus 3rd Wednesday, 6:30 p.m. Columbus Community Hospital - meeting room 110 Shult Drive Columbus, TX 78934 Carol: 979-732-5945 Corpus Christi - Coastal Bend Connection 4th Saturday, 11:30 a.m. YWCA 4601 Corona St., Suite 230 Corpus Christi, TX 78411 RSVP: 1-800-344-4867 Press 1 and verify summer schedule Toll-Free Number: 1 800 FIGHT MS SELF HELP GROUPS Dallas (Carrollton) Care Partners 2nd Thursday, 6:30 p.m. National MS Society 2105 Luna Rd., Suite 390 Carrollton, TX 75006 Paula: 972-345-5659 Dallas (Carrollton) Moving Forward 2nd Thursday, 6:30 p.m. National MS Society 2105 Luna Rd., Suite 390 Carrollton, TX 75006 Cecelia: 972-672-2519 Angela: 214-941-2261 Dallas - Veterans & their Care Partners 3rd Monday, 3 p.m. Dallas VA Medical Center 4500 S. Lancaster Rd., SCI/D Unit Dallas, TX 75216 Bill: 972-412-3637 Denton 4th Saturday, 10 a.m. 2809 S. Mayhill Rd. Denton, TX 76208 Mark: 214-394-9207 Diane: 940-595-0923 Flower Mound 3rd Monday, 7:00 p.m. p.m. Crossroads Bible Church 8101 Justin Rd. (Hwy 407) Lewisville, TX 75077 Melissa: 972-539-2144 Ft. Bend County (Sugar Land) 3rd Thursday, 7:00 p.m. First United Methodist Church - Room 602 431 Eldridge Road Sugar Land, TX 77478 Lori: 281-240-8828 Houston - Care Partners 2nd Tuesday, 6:30 p.m. National MS Society, Ste.100 8111 N. Stadium Dr. Houston, TX 77054 713-526-8967 and press 2 Houston But You Look So Good 1st Saturday, 10:00 a.m. Cy-Fair College – Fairbanks 14955 Northwest Fwy., Room 221 Houston, TX 77040 Andrea: 832-969-5845 Houston - MS & Cancer Telephone Support Group Margaret: 713-278-7548 rgaret: 13-28-548 Houston -The New Beginning 2nd Tuesday, 6:30 p.m. National MS Society 8111 N. Stadium Dr., Ste. 100 Houston, TX 77054 Steve : 281-557-5535 Fran : 713-663-5070 Houston (Medical Center) V.A. everyone welcome 2nd Wednesday, 2:00 p.m. Veterans Affairs Medical Center 2nd Floor Nursing Unit, Dining Room 2002 Holcombe Blvd. Houston, TX 77030 Lisa, MSW: 713-794-7951 Fe, MSN, RN, CNRN: 713-791-1414, ext. 4559 Houston - Still Standing African - American Working Women 3rd Thursday (odd months), 6:30 p.m. alternating with 3rd Saturday (even months), 11:00 a.m. SpringHill Suites by Marriott 1400 Old Spanish Trail Houston, TX 77054 Tracey 713-798-4470 Houston (Northeast) 2nd Sunday, 3:00 p.m. Lamb of God Lutheran Church 1400 E. FM 1960 Houston, TX 77073 Jack 281-361-4595 Houston (Northwest) 3rd Saturday, 1:30 p.m. Memorial Springs Shadows Hospital-1st Floor Conf. Rm. 3033 Gessner Dr. Houston, TX 77080 Bill: 281-496-4506 Irving FACES of Multiple Sclerosis 3rd Saturday, 10 a.m. Jaycee Center for the Arts 2000 West Airport Freeway Irving, TX 75061 Renee 972-253-1010 Huntsville 2nd Tuesday 6 p.m. Huntsville Memorial Hospital cafeteria area 110 Memorial Hospital Drive Huntsville, TX 77320 Jeannie: 936-291-0386 Killeen - Heart of Texas 3rd Tuesday, 6:00 p.m. Robertson Avenue Baptist Church 305 E. Robertson Ave. Copperas Cove, TX 76522 Peggy: 254-542-5465 Longview 3rd Thursday, 10 a.m. Longview Regional Hospital 2901 N. 4th Street Longview, TX 75604 Visit our Website at: www.nationalmssociety.org/txh 13 2007 Issue 3 SELF HELP GROUPS McKinney 1st Monday, 7:00 p.m. Medical Center of McKinney Wysong Campus 1st Floor Education Room Main Entrance 130 South Central Expressway McKinney, TX 75070 Elaine: 972-886-0442 Nacogdoches 3rd Wednesday, Noon Austin Heights Baptist Church 2806 Appleby Sand Road Nacogdoches, TX Marilyn: 936-564-3814 New Braunfels Alternating times: 4th Thursday, Noon 4th Thursday, 6:30 p.m. Fire Mountain Restaurant 485 Hwy 81 East New Braunfels, TX 78130 RSVP 1-800-344-4867 and press 1 Palestine 4th Saturday, 10 a.m. First Christian Church 113 East Crawford Street Palestine, TX 75801 Margaret: 903-478-3960 Plano But You Look So Good 1st Saturday, 10 a.m. Renner Frankford Library 6400 Frankford Rd. Dallas, TX 75257 Deb: 972-633-9203 Brenda: 469-467-2208 Maureen: 214-924-0914 14 Plano/Richardson 1st Saturday, 10:00 a.m. West Plano Presbyterian Church 2709 Custer Rd Plano, TX 75075 Bill: 972-612-0194 Texarkana 1st Tuesday, 4:00 p.m. St Michael’s Rehabilitation Hospital 2223 Morris Ln. Texarkana, TX 75503 Becky: 903-832-2617 San Antonio - Life After MS 1st Saturday, 10:00 a.m. HealthSouth RIOSA 9119 Cinnamon Hill San Antonio, TX 78240 RSVP 1-800-344-4867 and press 1 Waco 1st & 3rd Tuesday, 6:30 p.m. Lakeshore United Methodist Church 3311 Park Lake Drive Waco, TX 76708 Mary/Jeff: 254-863-0388 San Antonio Living Well with MS 2nd Wednesday, Noon. Warm Springs Resource Center 5101 Medical Drive San Antonio, TX 78229 RSVP 1-800-344-4867 and press 1 San Antonio - Newly Diagnosed & Beyond 3rd Tuesday, 6:30 p.m. Northeast Methodist Hospital Health Resource Center in Learning Center 12412 Judson Road Live Oak, TX 78233 RSVP 1-800-344-4867 and press 1 Texoma Area 1st Monday, 6 p.m. Sherman Medical Building 321 N. Highland, Suite 200 Sherman, TX 75092 Jennifer: 903-227-4576 Weslaco 2nd Saturday, 10:00 a.m. KNAPP Medical Center 1401 E. 8th St. Weslaco, TX 78596 RSVP 1-800-344-4867 and press 1 Waxahachie - MS Warriors 3rd Saturday, 10:00 a.m. Waxahachie Bible Church 621 N. Grand St. Waxahachie, TX 75165 Sherri: 972-617-7436 The Woodlands/ Spring/Conroe 2nd Sunday, 2:00 p.m. *Luby’s Restaurant 922 Lake Front Cr. 77380 Janis: 281-364-8737* *Call to verify locatione TX Toll-Free Number: 1 800 FIGHT MS T VOLUNTEERS Volunteers make a difference! he Lone Star Chapter has many volunteer opportunities. Whether you're a person with MS, a friend or family member, we have a volunteer opportunity for you. The following are just a few examples: Bike Tours - Enthusiastic, committed volunteers are key components to the annual MS 150 Bike Tours. Volunteers are needed to help hand out water, man information booths, hand out CHAMPS bandanas, cheer on cyclists and more. MS Empowerment Day - If you have MS, join us from 11 a.m. to 2 p.m. each month for fun, accessible volunteer projects. Meet other people affected by MS and catch up with friends. Free lunch is served. MS Empowerment takes place in Houston and San Antonio every 3rd Tuesday. In Dallas, it is every 3rd Wednesday and stay afterwards for great, informational Webinars. MS Walks - Like the Bike Tours, our MS Walks would not be successful without our volunteers. Nine MS Walks take place each year across the Lone Star Chapter. Volunteers are needed to help hand out water, assist with registration, greet walkers, hand out Finish Line medals and more. Champions Against MS Program - If you have MS, this program is one of the most important links between MS event participants and people living with multiple sclerosis. Sign up today and be that special inspiration for a cyclist or walker participating in an MS 150 Bike Tour or MS Walk. Create your own personal message that will be displayed on a red bandana which is worn by your assigned champion during the event. For more information on these and other volunteer opportunities throughout the Lone Star Chapter, please contact the following: Houston and Austin: Kelly Engle at [email protected] or 713-526-8967 and press 2. Dallas: 214-373-1400 and press 2. San Antonio and Corpus Christi - Tammy Travis-Treff at [email protected] or 210-494-5531 and press 2. Public Policy and Advocacy - The National MS Society advocates for public policy that ensures fair treatment of people with chronic illness or disability. The Society also promotes awareness of issues that affect people living with MS. People with MS, their family members and friends can be extremely persuasive in communicating their views because they speak with firsthand knowledge of effects of particular policies on people living with the disease. Join our advocacy effort and make a difference! Visit our Website at: www.nationalmssociety.org/txh 15 2007 Issue 3 ASK THE PHARMACIST By I.D. Freed, R. Ph. “Is there a special diet that would help my MS? Would vitamin supplements help?” There have been many “MS diets” touted, including those avoiding wheat and rye; one which eliminates unripe fruits, fruit juices, and certain other fruits and vegetables; and one which eliminates tobacco and table sugar. There is also the Kousamine Diet (low fat, low sugar high fiber diet with extra vitamins), the Evers Diet (where only natural unprocessed foods are eaten), the McDougal Diet (combining low fat with high gluten, extra vitamins and minerals) and a host of others. The Therapeutic Claims Committee of the International Federation of Multiple Sclerosis Societies is responsible for studying all claims of efficacy in the treatment of MS. All of the above diets (as well as countless others) have been studied by the Committee; none of them have been found to be useful in the treatment of MS. Most of these diets have never been tested in a properly-controlled trial. Many of the dietary regimens are not harmful, but they may require rigorous and often stressful attention to detail without improvement in MS symptoms. Some can be risky, especially those that advocate mega nutrients; large quantities can have serious side effects. Plus, regimented drugs and eating plans can be VERY expensive! 16 So, to answer your question in two words: NOT YET! The best diet for MS patients is still a “well-rounded” one (not one that makes YOU “round”) that provides all of the essentials in the proper amounts (and NO, the four major food groups are NOT “fast, freezer-burned, frozen and spoiled!”). A good reference source is one that shows the nutritional pyramid developed by the U.S. Department of Agriculture (USDA). Current dietary recommendations emphasize a large and varied intake of fruits, vegetables and grains, and lesser amounts of low-fat meals and dairy products. Maintain your ideal body weight (and remember that the less extra weight you drag around, the easier it is to GET around!). Dietary and medical professionals recommend that that you drink at least eight 8ounce glasses of water daily (and remember to keep restroom facilities in sight!). A well-balanced diet can give you energy, help you control your weight, help your body fight off infections, heal normally and stay regular. It could even make you feel better. As nutritional supplements go, none have been proven to be effective in the treatment of MS. Many dietary supplements are not regulated by the Food and Drug Administration (FDA) and might contain questionable ingredients. A daily multivitamin won’t hurt you, but stay away from high doses of vitamins or other supplements. No diet has been proven to stop or treat MS, but keeping yourself nutritionally fit will go a long way toward helping you cope with it. If there’s a topic you’d like to see discussed here, please send it to me at [email protected]. Have a cool summer! Toll-Free Number: 1 800 FIGHT MS L O N E S TA R C H A P T E R Nominees for Lone Star Chapter’s Board of Trustees Now Being Accepted During the Annual Meeting and Research Symposium this November the Governance Committee of the Lone Star Chapter will present a slate of candidates from which chapter members will elect the Board of Trustees. Board members serve one-year terms. Individuals interested in being considered for nomination should submit a letter of interest including a biography, along with your name, mailing address and phone number. Nominees will be notified of board member expectations, responsibilities, fiduciary and time commitments, and asked to complete a Candidate for Board of Trustees form. Final candidates will be interviewed by a member of the Governance Committee. All candidates will be notified of their status prior to the Annual Meeting. Nominations for the Board of Trustees should be submitted by Aug. 15, 2007 to: Mark Neagli National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054 Society’s National Heads to Big D Conference The eyes of Texas – and the United States – will turn to Dallas this fall. Join the movement with hundreds of volunteers from across the United States at the National Multiple Sclerosis Society's 2007 National Conference in Dallas on Oct. 24 – 26. More details about this year's conference and how you can be involved will be published in upcoming editions of the chapter’s MS E-Connection, which is distributed monthly by e-mail. If you’d like to begin receiving the MS EConnection, please contact James Black at [email protected] today. Chapter Offices Upcoming Holidays Close for The National MS Society, Lone Star Chapter offices in Austin, Corpus Christi, Dallas and Houston will be closed July 4 – 5 in observance of Independence Day. This fall, the offices will be closed Aug. 31 – Sept. 3 for Labor Day. Everyone at the Lone Star Chapter wishes you safe, enjoyable and memorable holidays this summer and fall. Visit our Website at: www.nationalmssociety.org/txh 17 2007 Issue 3 L O N E S TA R C H A P T E R Rivera Chairs Hispanic Advisory Council Victor M. Rivera, M.D., F.A.A.N. has accepted an invitation to chair the Hispanic Advisory Council for the National Multiple Sclerosis Society. Dr. Rivera will also continue his executive committee role on the Society’s National Clinical Advisory Board, formerly known as the Medical Advisory Board, or MAB. Dr. Rivera serves as full Professor of Neurology at Baylor College of Medicine, and is Attending and Deputy Chief of Neurology at The Methodist Hospital, and Medical Director of the Neurology and Surgical ENT/EYE Unit of the Neurosensory Center in Houston. He founded the Baylor International MS Center in 1996, now know as the Maxine Mesinger MS Clinic, Baylor Multiple Sclerosis Center at Methodist Hospital, and has served as its Medical Director since that time. Chapter is proud to recognize Gina Remington as recipient of the prestigious John Dystel National Multiple Sclerosis Society Nursing Fellowship. Gina is a Senior MS Research Nurse at The University of Texas Southwestern Medical Center at Dallas MS Clinic. The fellowship is an important initiative that encourages, dignifies and promotes nursing development. Campers Treatment Get Carpet The Lone Star Chapter went Hollywood at Camp Can-Do in May. The annual camp for people with MS and their families featured an all-star Hollywood theme, with chapter staff, volunteers and clients getting into the act as their favorite celebrities with movie-themed cabins. Throughout the weekend, MS clients enjoyed fun, accessible activities such as canoeing, horseback riding, fishing, arts and crafts, and much more. He is president of the LatinAmerican Committee for Treatment and Research in MS, and a delegate for the Neurology Course in Spanish of the American Academy of Neurology. Dr. Rivera has been a continuous member of the medical, professional and clinical advisory committees and volunteer of the National MS Society, Lone Star Chapter since 1976. Remington Awarded MS Nursing Fellowship The National MS Society, Lone Star 18 Red Toll-Free Number: 1 800 FIGHT MS ADVOCACY & PUBLIC POLICY Visit our Website at: www.nationalmssociety.org/txh 19 2007 Issue 3 DEVELOPMENT 13,000 Riders Join Nation’s Largest MS Fund-Raiser In April, the largest cycling event of its kind and the largest single fund-raising event for the National MS Society headed for the hills. Across 180 miles from Houston to Austin, the 2007 BP MS 150 attracted riders from throughout the world, united in their passion to fight multiple sclerosis. The 2007 event is on track to set a fund-raising record of $12 million for MS research and client programs. Margaret and Nancy met with the Lone Star Chapter to discuss Nancy’s idea of providing special Finish Line accommodations for people with MS. From that meeting, the first Bubble Bistro was born.Nancy developed the theme because she wanted a festive, fun name for this special tent. “I want everyone with MS to know about the Bubble Bistro so they need not worry about shade or relief from the heat,” Nancy said. In creating the Bubble Bistro, Nancy and Margaret enlisted the help of Anne, a neighbor and friend recently diagnosed with MS. With room for 30, the brightly-colored Bubble Bistro featured a cool, shaded tent area with refreshments beside the Finish Line. True to its name, it also featured plenty of bubbles wafting across the Finish, welcoming 13,000 riders to Austin on their trek to fight MS. BP MS 150 CHAMPS Bistro Bubbles with Excitement Nancy Gerner, Margaret Pichon and Anne Roland teamed up to really make the 2007 BP MS 150 Austin Finish Line bubble over with excitement. Since her MS diagnosis seven years ago, Nancy has been a mover and shaker in supporting her family and friends who ride in the BP MS 150. Each year, she’s at the Finish Line, cheering on and cheering up riders with her handy bubble machine. However, Nancy realized something missing was an area for CHAMPS, those with MS who come out to support those riding in their honor. She also knew that April’s heat can be miserable, especially for those with MS. 20 “Hopefully, it’ll grow in size, more people will learn about it and they’ll join the fun,” said Nancy of the Bubble Bistro. “I’m so excited to be part of this.” Have a Ball with the Astros July 26 The annual BP MS 150 Night with the Houston Astros is Thursday, July 26. Cheer for Top Fund-Raisers and BP MS 150 sponsors at Minute Maid Park before the Astros take on the San Diego Padres. Field box tickets are $20 each. Deadline to buy is July 10. Tickets will be mailed to you. Visit www.ms150.org to order tickets online. If you need accessible seating, e-mail [email protected]. Toll-Free Number: 1 800 FIGHT MS DEVELOPMENT Visit www.mswalklonestar.org for online registration and more information. SAM’S CLUB MS 150 Rolls Across North Texas Nothing could dampen the spirits of riders on the road to a cure for MS! The 2007 SAM’S CLUB MS 150 rolled from Frisco to Fort Worth in early May. A record-setting 3,000 cyclists signed up for the two-day, 150-mile trek across North Texas to raise funds to help people living with multiple sclerosis and to fund MS research. This year’s SAM’S CLUB MS 150 expects to raise a record $2.4 million. Corpus Christi Tells MS to Take a Hike This April, more than 500 participants joined the MS Walk Corpus Christi, presented by H-E-B and AT&T. Held in conjunction with Buc Days, the city’s premier spring fun-filled festival, this year’s MS Walk by the bay featured a 5K stroll through Corpus Christi’s Heritage Park. Bayou City Area Laces Up for Sept. 8 – 9 Events A trio of MS Walks is on track for Saturday, Sept. 8, at Katy Mills Mall, the Kemah Boardwalk and Panther Creek Shopping Center in The Woodlands. In addition, The Woodlands will feature a Fun Run. In the Bayou City, walkers will step off Sunday, Sept. 9, at historic Sam Houston Park in downtown Houston. The Houston event features one-mile and 5K routes. Waco Walks on the Wild Side Sept. 22 The NexBank MS Walk Waco, presented by Subway, struts its stuff on Sept. 22. Waco walkers will take a stroll on the wild side at the Cameron Park and Zoo. Participants will enjoy incredible zoo exhibits, plus the beauty of the famous Washington Street Bridge. Entertainment, food, and more will round out the morning for this 5K event. New November Date Set for MS Walk Austin It's a whole new ballgame for the MS Walk in Austin on Sunday, Nov. 11. This autumn's Austin-area MS Walk is set for a great new location: The Dell Diamond ballpark. Home of the Round Rock Express, The Dell Diamond was named "Best Double-A Ballpark in the Country" by Baseball America magazine in 2003. Step Up for Fall 2007 MS Walks Fall into step this year with the MS With feedback from MS Walks. clients, participants and MS Walk Committees, the Fall 2007 MS Walk roster features events earlier in the season and a new event site in Austin. Visit our Website at: www.nationalmssociety.org/txh 21 2007 Issue 3 DEVELOPMENT Have a Cool Ride with the 2007 Valero MS 150 Registration has opened for this fall’s 2007 Valero MS 150. This year's Valero MS 150 from San Antonio to Corpus Christi has a cool new date. Thanks to feedback from cyclists, volunteers and MS clients, the Lone Star Chapter moved the date of the event from the traditional – and sultry – first weekend of October. The 2007 fund-raiser is now scheduled for Oct. 20 – 21. Save the date to be a cool rider as we head to the beach to wave goodbye to multiple sclerosis. Visit ms150.org for secure online registration and additional Valero MS 150 information. 22 Toll-Free Number: 1 800 FIGHT MS RESOURCES MS Learn Online Participate Online Today! Stay Connected with the MS E-Connection The National MS Society has an exciting menu of MS Learn Online webcasts currently available on its Web site. Each webcast features experts speaking on pertinent topics for those affected by multiple sclerosis. Programs and their written transcripts can be accessed at www.nationalmssociety.org/mslearnonline. Stay connected to the Lone Star Chapter by signing up to receive the MS E-Connection, our monthly e-newsletter. You will get updated Lone Star Chapter information on educational, wellness and social programs; special events; advocacy and recent advances in MS research. Would you like to be notified via e-mail of upcoming MS Learn Online programs? Please send your e-mail address to: [email protected]. Online Resources There are also a vast amount of online resources at: www.nationalmssociety.org. Professional Resource Center The Society’s Professional Resource Center (PRC), which houses the most comprehensive library of MS information in the world, provides a variety of information and consultation services. Our goal is to partner with healthcare professionals to enhance quality of care and increase access to care for people with MS. To receive MS E-Connection, visit www.nationalmssociety.org/txh. Enter your e-mail address in the box under the “Stay Connected” headline. If you have any questions, please feel free to contact the Lone Star Chapter at 713-526-8967 or 1-800-323-4873 and press 2. PRC Services & Publications • Clinical Bulletins • Clinical Updates • Research Bulletins • Request a free Literature Search • Read about Fellowships and Training Opportunities • Learn the latest on Pediatric MS • See our Professional Education Offerings • Access Resources for MS Clinicians • Access Resources for MS Researchers • Find National MS Society Affiliated Clinical Facilities For more information, log www.nationalmssociety.org/prc. onto www.nationalmssociety.org Get the facts on multiple sclerosis research, disease management, advocacy, professional education and more. Visit our Website at: www.nationalmssociety.org/txh 23 CHAMPS PROGRAMS 2007 Issue 3 Champions Against MS - Connecting for a Cure The Champions Against MS, CHAMPS, program is one of the most important links between MS 150 and MS Walk participants and people living with multiple sclerosis. If you would like to become a Champion for this free program, contact your local Society office. 1-800-FIGHT- MS www.nationalmssociety.org/txh NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Houston, TX Permit # 7017 Lone Star Chapter 8111 N. Stadium Drive, Suite 100 Houston, Texas 77054 Toll-Free Number: 1 800 FIGHT MS
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