M O V I N G TO WA R D A W O R L D F R E E O F M S Winter 2012
New Orleans Celebrates Renaissance
The National MS Society’s 2012 Renaissance Party was held Friday, Dec. 9, at the Renaissance Arts Hotel in New Orleans and was attended by about 400 guests. Scott Duggins, Allison Tiller and Jill Varney co-chaired the event that is planned by a committee of about 50 volunteers. The event included live and silent auctions and is well-known for the quality and variety of the featured artwork available to bidders. The live auction featured themed packages that included four tickets to the BCS championship game between LSU and the University of Alabama. Louisiana Spice provided entertainment for the event which included an elaborate food buffet and open bar. Proceeds from the event will support MS research and people who are affected by the disease.
Renaissance Party 2011 co-chair Jill Varney and Renaissance Party Committee member Ellen Manning show off jewelry donated by Friend & Co. for the live auction. Renaissance Party guests Tim Glennon (left) and Henriette Harris (right) visit with MS Society Louisiana Leadership Council member Mark Preston (center) during the party. Preston also served as co-chair of the 2010 Renaissance event.
— Annual Meeting —
This year’s Annual Meeting was held virtually on Friday, Feb. 3. During this time, the results of the Board of Trustees election were announced. A financial report and a research update from Dr. Amy Gutierrez of New Orleans, La were also presented. This update covered progress made in 2011 around the Society’s research strategy of stopping the progression, restoring function and ending MS forever.
Louisiana The MS CONNECTION is a publication of the National Multiple Sclerosis Society, Louisiana, and is published three times a year. 4613 Fairfield Street Metairie, La. 70006 phone: 1-800-344-4867, Option 1 or 504-832-4013, Option 1 www.mslouisiana.org Nationwide MS Hotline: 1-800-344-4867, Option 1 NMSS website: http://www.nationalMSsociety.org
The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear 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. The National MS Society is dedicated to ending the devastating effects of MS. 2
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Regional Executive Vice President Mark Neagli Vice President of Development, Louisiana Rebecca Pennington, Ph.D, CFRE Director of Programs & Services Crystal Smith, BA, MSCIR, MSSMC Coordinator, Programs & Services Anna Moss, BSW Development Manager Jessica Aubin, BS Office Manager & Administrator Susan McCarthy
Please let us know if you would like to receive this newsletter by e-mail. We would appreciate this very much as you help us to go green! Thank you! Call 1-800-344-4867, Option 2, Ext 3787.
Bike MS 2011
Bike MS 2011 is one for the record books. This year’s event was held October 1-2. As always the event started with a Friday night kick-off, September 30, at Southeastern Louisiana University in Hammond. Chef John Folse and Company provided the delicious food and music was in the air that night to get participants ready for the next day’s journey. The event started bright and early Saturday morning at the University Center and cyclists rode 75 miles to Percy Quin State Park in McComb, Miss. They made the return trip home on Sunday.
Bike MS: Louisiana 2011 had 1,300 registered cyclists and raised $788,000 for those living with multiple sclerosis in Louisiana. We are so thankful for all of the hard work our participants did raising this incredible amount of money. We would also like to
thank our volunteers who work tirelessly each year to make our event the success that it is. We certainly could not do this without them. Registration for Bike MS 2012, being held October 6-7, is in full swing. You may register as a cyclist or a volunteer – both are essential in making this event great and bringing us closer to a World free of MS. Please visit our website at www.bikemslouisiana.org. If you have any questions please feel free to contact Jessica Aubin at 504-322-3789. We look forward to seeing you at Bike MS 2012!
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ALEXANDRIA HealthSouth, Conference Room on first floor 104 N. Third Street Second Tuesday, 6 p.m. For more information: Tarra Babin and Shada Brown, Co-Leaders 318-374-0058
LAFAYETTE First Tuesday, 5:30 p.m. Lafayette Physical Rehabilitation Hospital 307 Polly Lane Dawn Abbott, Leader Angela Trahan, Co-Leader
AMITE/HAMMOND First Tuesday, 5:30 p.m. Tangipahoa Police Sub-station 15475 Club Delux Rd., Meeting Room Hammond Bill and Judy Perkins, Leaders 985-878-6313 Stephanie Carter, Co-Leader 985-542-2705
Tri-Parishes Self-Help Group Meet Last Wednesday of month, 7 p.m. St. John the Baptist Parish Library 2920 Hwy. 51 LaPlace, La. 70068 985-652-6857 (for directions to library) Joan Ory, Leader email@example.com
BATON ROUGE Third Tuesday, 12 Noon Family Road of Greater Baton Rouge 323 E. Airport (directions: 225-201 -8888) Joyce Smith and Donna Hildebrandt, Co-Leaders
MANDEVILLE Second Tuesday, 7 p.m. St. Timothy Methodist Church Educational BIdg. 335 Asbury Drive Susan Scott and Peggy Cartier, Co-Leaders
HOUMA First Thursday, 7 to 8:30 p.m. Terrebonne General Medical Center Outreach Center, Southland Mall 5953 Park Ave, Suite 3003 Fran LeBlanc, Leader Penny Gilton, Co-Leader
METAIRIE New - Third Thursday, 7 p.m. Starting March 2012 No February Meeting 504-322-3781 Janice Naquin, Leader 1000 W. Esplanade Ave. Metairie, La. 70005 (Library # for directions.) 504-838-4375
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MONROE Last Thursday, 12 Noon Glenwood Med. Mall, Community Room 102 Thomas Road West Monroe Lynn Armet, Leader NEW ORLEANS West Bank Jesters First Friday of each month at 10:30 a.m. Gretna Community Center 1700 Monroe St. Gretna, La. 70053 Diane Orlesh, Leader, 504-394-5623 Kim Maloz, Co-Leader, 504-394-2274 First time visitors should call Diane or Kim to confirm location. Mid-City New Orleans Newly Diagnosed Group Ochsner – Baptist Campus 4429 Clara St. New Orleans, La. 70115 Conference Room – Krew Room 310 Second Monday 6 to 7:30 p.m. starting September 12th Mimi Jalenak, Leader 504-861-0859 For directions call Ochsner Dept. of Neurology 504-842-3980 (M– F, 8 a.m. – 5 p.m.) * Metairie SHG seeking Leader and Co-Leader
RUSTON Second Saturday, 10:30 a.m. to 12 Noon Health South Ezell Street (across from Green Clinic) Barbara McIntyre, Leader, (318) 243-1858 Sherry Lewis, Co-Leader
SHREVEPORT First Tuesday, 6 p.m. Willis-Knighton Hospital Steen Hall Eye Institute 2611 Greenwood Rd. (corner of Greenwood and Hearne Ave.) Linda Galloway, Leader
Vinton, LA Knights of Columbus 1424 Grace Avenue Vinton, La. 70668 Second Saturday 10 a.m. â€“ 11:30 a.m. Elaine Briggs, Leader 337-309-5124
Self-Help Groups Offer Both In-Person and Phone Support by Susan La Combe
Self-Help Groups offer opportunities to make new friends and share with others how you experience life with MS. Meetings provide settings to share common concerns, give and receive emotional support and receive MS-related information from peers and guest speakers. Self-Help Groups are facilitated by trained volunteers with personal experiences with MS. Phone Group Name Home is Your Range MS and Cancer Group contact, Margaret Barney firstname.lastname@example.org
To find a group that meets in-person near you, call the National MS Society at 1-800344-4867. The Society also offers several Self-Help Groups that meet by phone, giving you the opportunity to join in from the comfort of your own home:
Meeting Day/Time First Wednesday of each month 1 p.m. CST Fourth Wednesday of each month 3 p.m. CST
Cafe con Leche: Conversations and Tuesdays Support for People Living with MS 1 to 2:30 p.m. CST Monthly telephone group in Spanish Stay at Home Support for those living with MS for five years or more
Third Wednesday of each month 11 a.m. CST
Susan LaCombe is Programs and Services Manager in the Societyâ€™s Dallas office. She can be reached 1-888-346-3659 (enter code 64552 at susan. when prompted) lacombe@ nmss.org. 1-888-346-3659 (enter code 64552 when prompted) Call-In Number 1-888-346-3659 (enter code 1073 when prompted) 1-888-346-3659 (enter code 1073 when prompted)
TOLL FREE NUMBER 1 800 344 4867
Five Quick Tips for Dealing with Claustrophobia during your MRI Exam When a doctor orders an MRI examination, communications system. In most cases this is many patients immediately begin to feel accomplished via a set of headphones. “anxious” about the exam due to the shape 2. Get comfortable on the table of the MRI scanner and their ability to remain All MRI systems are built to facilitate still during the procedure. Frequently patients patient comfort by providing lots of pads have reported being in a scanner for an hour and supports so that the patient can be or more for the whole procedure. Patients fully comfortable during the exam. Patients fully understand that holding still for the who are comfortable and can communicate exam will provide their doctor with “clear clearly with the operator during the course of pictures” so that they may provide them with the exam usually can complete the exam. the best clinical treatment available. With 3. Have a friend or relative in the MRI modern MRI systems of at least 1.5 Tesla, an exam room with you. MRI exam can usually be conducted in about This person will have to be screened for 30 minutes and on ultra metal even though they are not in the high field 3 Tesla systems scanner, but frequently this technique can take as little as 10 is of great comfort to the patient. minutes depending on 4. If available, ask the operator for the exam. the “squeeze ball” call system. 1. Speak with the MRI This will allow you to immediately technologist who notify the technologist should you is going to do your become anxious during the exam. exam and be sure 5. If all else fails, speak with your they understand doctor or the imaging facility about you suffer from medication. claustrophobia. This should be done ahead of time Frequently and in most the person who cases, you will is operating the have to have scanner is not the someone same person who to provide will interview the transpiration patient prior to after the the exam. Ask the exam is operator to speak completed. to you prior to and during the exam utilizing the Images courtesy of Doctors Imaging 6
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Wellness Program Reminders! Alexandria – MS Aquatics YMCA-Alexandria, 1831 Turner St. Call Emmy Partain, program coordinator, for details at 318-445-8261. Baton Rouge – MS Chair Aerobics Baton Rouge Self Help Group Meetings on occasions with Donna Hildebrandt. Covington – MS YOGA Star Fitness Center in Covington. MS participants can participate without being members of center at a cost of $5 per class. Lafayette – MS Chair YOGA Our Lady of Lourdes Fitness Center every Monday and Wednesday from 5:30 p.m. to 6:15 p.m. $1 per class.
Lake Charles – MS Aquatics Our Lady Queen of Heaven Family Life Community Center, 3939 Msgr. deBlanc Place. Contact Denise Ackley, program facilitator, for details at 337-474-6814. Metairie – MS Aquatics East Jefferson Wellness Center on Tuesdays and Thursdays, 12:30 to 1:15 p.m. Contact Amy Berthelot, program facilitator, for details at 504-849-6815. Shreveport – MS Aquatics Willis-Knighton Wellness Center, Greenwood location. Classes meet Wednesdays 3:30 to 4:30 p.m., $5 per month Call Holly Biernet, program facilitator, for details at 318-212-4475.
Keep Your Expenses from Becoming a Taxing Situation Many of the expenses associated with managing multiple sclerosis – beyond medicines – might be tax-deductible. • Keeping in mind that only unreimbursed medical expenses that exceed 7.5 percent of your adjusted gross income are deductible, here are additional possibilities: • Equipment and extras – such as service dogs and their food, and transportation to doctor appointments via car service or taxi if you can no longer drive Home modifications that do not increase a home’s value (Anne Davis, Program Director of Legal Services for the Society’s New York City and Southern New York Chapter, said, “Get a doctor’s prescription
for ramps, wider doorways, grab bars, even a swimming pool, as well as a letter from a real estate agent stating that these changes don’t make your home more valuable.”) For people receiving SSI or disability benefits, impairment-related work expenses may be deducted from their earnings, if their income might otherwise jeopardize their government benefits. Two IRS publications may be helpful and are available from your local IRS office: • 907, Tax Highlights for Persons with Disabilities • 502, Medical and Dental Expenses Consult an accountant to make sure your particular situation is in line with current IRS regulations. TOLL FREE NUMBER 1 800 344 4867
Preparing for Pregnancy Helps Avoid the Drama of Becoming a Mama
about whether breastfeeding was protective in preventing relapses,” said Dr. Green. “But a new study quotes a beneficial effect on relapse. People with non-aggressive disease may be able to wait to resume DMDs, which can’t be taken while nursing.” Include any symptom-management The good news about medications in the discussion with your planning a pregnancy doctor. From bladder problems to fatigue, when you have MS is that there’s no evidence pregnancy can make MS symptoms worse, yet many meds are not safe for that MS has any effect on fertility. Pregnancy pregnant women. “We advise people on non-pharmaceutical approaches: getting usually reduces enough sleep, adjusting work schedules and exacerbations, exercising,” said Dr. Green. although flares “Symptoms during pregnancy are do tend to probably not MS. Tiredness doesn’t mean increase postpartum, your symptoms are coming back,” said Eileen Davis, APN, who has worked with people and good outcomes are with MS for 12 years in New Jersey and New York. Keep exercising, she recommended, “so the norm. Nevertheless, you aren’t carrying unnecessary weight postpregnancy, which can affect symptoms such making the as falling.” decision to get Connect your obstetrician and neurologist pregnant can be complicated, primarily to coordinate your care. If anesthesia is part because of the physical challenges of MS. of your birth plan, arrange a meeting with Said Barbar Green, M.D., director of the the anesthesia team. All forms of anesthesia West County MS Center in St. Louis, “I also suggest women think about and discuss with are considered safe for women with MS. Don’t wait to plan for what happens after their partners the emotional and financial delivery. Tap family members and friends challenges of raising a child, which could about helping with housework, preparing affect work and managing the disease.” food and, of course, watching the baby. None of the disease-modifying drugs Check out the Society’s collection of (DMDs) are approved for use during pregnancy and most should not be taken for videos, books, booklets and Web pages a few months beforehand. Plan a discussion – available at nationalMSsociety.org/ pregnancy – that you can download. You can with your neurologist about when to stop also call the Society at 1-800-344-4867 (press DMDs and when, after delivery, to begin 1) for free printed copies. them again. “Until recently, most studies were neutral
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LOUISIANA MS ACTIVISM
Success in 2011 and Exciting Developments on theHorizon for 2012!
continued funding for essential supports like community based services, Medicaid programs, and long-term services and supports. At the end of the day, National MS Society Louisiana Public Policy Day 2011 and MS Activists were proud to be recognized The work that MS Activists began during in the Louisiana House of Representatives. the 2011 Louisiana Public Policy Day laid the Louisiana activists who participated in foundation for the successes achieved during Day at the Capitol deserve credit for the sucthe most recent legislative session. cesses achieved during the 2011 Legislative On that day, 50 of our most passionate MS session, and the work they began on that day Activists came together to build their activsurely laid the groundwork for future accomist skills in preparation for efforts that would plishments. take place during the legislative session. National MS Society staff, Government Rela- MS Activists Engage to Protect tions Committee (GRC) members, and state Access to Prescription Drug officials all contributed valuable insight and MS Activists were there as HB 345, our pricoaching to the activists in attendance. ority legislation to prohibit mid-year increasRep. Juan LaFonta (D-New Orleans), who es to prescription drug co-pays, made its way authored HB 345, our priority bill, addressed through the legislative process. The MS Acattendees and answered questions. His tion Network made it possible for hundreds words inspired and energized attendees as of Louisiana activists living with MS commuthey headed off to meet with their represen- nicate with their state officials about their extatives. periences with high cost, disease-modifying In-person visits allow activists to particiand symptom management drugs. pate in dialog about critical issues and are MS Activist Mary Gramlich of Ponchatoula key to building relationships with state lawwas among those who testified before the makers. Activist visits raise awareness about House Insurance Committee to ask RepresenMS, and can make a significant difference tatives to vote in favor of HB 345. Mary exin the path that a piece of legislation takes plained that, like many Louisianans with MS, toward becoming law. she works very hard to stick to her modest For example, MS Activists who visited with budget in order to make her monthly health Rep. Steve Pugh (R-Ponchatoula) discussed insurance premiums and prescription drug the importance of ensuring consistent terms co-insurance. for prescription drug coverage through the Her testimony was a powerful tool in life of an insurance contract. As a result of gaining the committeeâ€™s support for the bill their visit, Rep. Pugh agreed that this should and building momentum for its passage. HB be a priority and offered his support of HB 345 passed in the House of Representatives 345 to his constituents. with an impressive 81 â€“ 5 vote. In other visits with state officials, MS AcIn the Senate HB 345 was championed tivists spoke to their representatives about by Senate President, Sen. Joel Chaisson (DTOLL FREE NUMBER 1 800 344 4867
LOUISIANA MS ACTIVISM
Lulling). Sen. Chaisson’s testimony about his personal connection to MS and the importance of the proposed legislation during both the House and Senate Insurance Committee hearings was key is getting support from committee members. Sen. Chaisson said: “As the brother of a young man suffering from MS who is bound to a wheelchair for the rest of his life, I know first-hand how difficult it is to live with that kind of condition and to rely on medicines. I can’t imagine getting a letter 30, 45 days or 60 days into my policy only to find my co-pays go from $15.00 to $200.00. This is strictly an issue of fairness. Shouldn’t these changes be made at the time of renewal? The real reason insurance (companies) don’t want to do this is because they don’t want to maintain the records.” Thanks to the combined efforts of Sen. Chaisson and committed Louisiana MS Activists HB 345 passed unanimously in the Senate with a 37–0 vote. As passed by the Louisiana Legislature, House Bill 345, now Act 350, maintains prescription drug coverage for the entire length of an enrollee’s contract and requires 60-day notification of any changes prior to the re-enrollment period. It was signed into law by Gov. Bobby Jindal on July 3 and became effective January 1, 2012.
Join the Advocacy Excitement in 2012
We can already see it from here: 2012 will be an exciting year in Louisiana MS Advocacy! The Louisiana Government Relations Committee (GRC) and MS Activists across our state are already busy planning for the 2012 legislative session scheduled to begin on Monday, March 12. Activists who took action in 2011 know from experience what activism can accomplish. In addition to fairness in insurance practices in Louisiana, around the country MS Activism successes have included legislation that has advanced research efforts, ensured better care and support for people living with MS and provided respite services to caregivers. We hope we count on you to be involved in 2012 as we work to create more support for people living with MS. Stay tuned for more details about the 2012 Louisiana Public Policy Conference, our 2012 legislative priorities and information about how you can be part of the 2012 MS Activism movement! For questions, or to register to receive more information, please contact: Crystal Smith, BA, MSCIR, MSSMC Director, Programs & Services, Louisiana
3rd Annual Louisiana 12th Annual Bayou Public Policy Day MS Health Fair Wednesday, April 11, 2012 10a.m. – 2p.m. Louisiana State Capitol Rotunda Agenda will include MS Activist Training and Legislative visits. Lunch will be provided. 10 |
Saturday, May 19, 2012 9a.m. – 2p.m. St. Martin’s Episcopal School, Solomon Theater Metairie, La.
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MS Getaway Weekend Retreat
Friday, June 1 – Sunday, June 3, 2012 Wesly Conference Center Woodworth, La.
70% Report Walking Difficulties as Most Challenging Aspect of MS Walking difficulties or trouble with balance affect the majority of people with multiple sclerosis, and 70 percent of people with MS-related walking difficulties report that trouble walking is the most challenging aspect of MS. However, 40 percent of people with MS “rarely or never” discuss walking problems with their doctors, according to results of a June 2011 survey conducted on behalf of the National MS Society and Acorda Therapeutics. Approximately two thirds of people with MS (65 percent) report having trouble walking, the inability to walk or difficulty maintaining balance at least twice a week. In addition, a majority of people with MS report that they experienced walking problems within the first few years after diagnosis. Among people diagnosed with MS within the past five years, 58 percent report experiencing a mobility issue at least twice a week. According to the survey, younger people with MS are less likely to initiate a conversation about trouble walking with a health care provider. On average, people with MS aged 41 or younger who do discuss trouble walking with their doctors initiate the conversations less than half – 46 percent – of the time. Both men and women with MS who report difficulty walking believe that it can put them at risk, but women are especially
concerned that walking problems can be hazardous. An estimated 78 percent of these women and 62 percent of these men report that trouble walking “makes getting around dangerous.” Among adults with MS who experience difficulty walking, 60 percent indicate that they have fallen and 34 percent of those say that a fall resulted in an injury. Typically, people who have experienced falls report having fallen about three times in the prior six months. Among all people with MS, six in 10 (61 percent) report that MS has interfered with their ability to work, resulting in a loss of personal income. Many with MS who have trouble walking and are currently employed indicated that they had to make lifestyle changes, such as switching to a new career or stopping work altogether for a period of time, because of their walking problems. Survey results also showed that 79 percent of adults with MS who are employed report trouble walking has negatively impacted them in some way at work, including having to take days off, asking for special accommodations or reducing work hours. Sixty percent of people with MS who have experienced difficulties walking have had to miss at least one major personal event as a result, while 32 percent of persons with MS who have difficulty walking report that it has caused them to feel isolated.
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Sign up today for Walk MS!
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There is no registration fee and no minimum pledge commitment; however, the average walker raises $100 to support research initiatives, programs and services of the National MS Society: Louisiana. Individuals interested in joining or creating a team can sign up online with co-workers, friends, family or neighbors.
For more information and to sign up visit www.walkmslouisiana.org
Published on Jan 31, 2012