msconnection: louisiana winter 2012

— 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.

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.

Winter 2012 Louisiana

M O V I N G TO WA R D A W O R L D F R E E O F M S

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.

The MS CONNECTION is a publicationof the National Multiple SclerosisSociety, Louisiana, and is publishedthree times a year.

4613 Fairfield StreetMetairie, La. 70006phone: 1-800-344-4867, Option 1or 504-832-4013, Option 1www.mslouisiana.org

Nationwide MS Hotline:1-800-344-4867, Option 1NMSS 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 | JOIN THE MOVEMENT: nationalMSsociety.org

ATTENTIONPlease 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.

Louisiana

Regional Executive Vice PresidentMark Neagli

Vice President of Development, LouisianaRebecca Pennington, Ph.D, CFRE

Director of Programs & ServicesCrystal Smith, BA, MSCIR, MSSMC

Coordinator, Programs & ServicesAnna Moss, BSW

Development ManagerJessica Aubin, BS

Office Manager & AdministratorSusan McCarthy

TOLL FREE NUMBER 1 800 344 4867 | 3

MS DEVELOPMENT

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!

SELF-HELP GROUPSALEXANDRIAHealthSouth, Conference Room on first floor104 N. Third StreetSecond Tuesday, 6 p.m.For more information:Tarra Babin andShada Brown, Co-Leaders318-374-0058

AMITE/HAMMONDFirst Tuesday, 5:30 p.m.Tangipahoa Police Sub-station15475 Club Delux Rd., Meeting RoomHammondBill and Judy Perkins, Leaders985-878-6313Stephanie Carter,Co-Leader985-542-2705

BATON ROUGEThird Tuesday, 12 NoonFamily Road ofGreater Baton Rouge323 E. Airport(directions: 225-201 -8888)Joyce Smith andDonna Hildebrandt,Co-Leaders

HOUMAFirst Thursday,7 to 8:30 p.m.Terrebonne GeneralMedical CenterOutreach Center,Southland Mall5953 Park Ave, Suite 3003Fran LeBlanc, LeaderPenny Gilton, Co-Leader

LAFAYETTEFirst Tuesday,5:30 p.m.Lafayette Physical Rehabilitation Hospital307 Polly LaneDawn Abbott, LeaderAngela Trahan, Co-Leader

TRI-PARISHESSELF-HELP GROUPMeet Last Wednesday of month, 7 p.m.St. John the BaptistParish Library2920 Hwy. 51LaPlace, La. 70068985-652-6857(for directions to library)Joan Ory, [email protected]

MANDEVILLESecond Tuesday,7 p.m.St. Timothy Methodist ChurchEducational BIdg.335 Asbury DriveSusan Scott andPeggy Cartier, Co-Leaders

METAIRIENew - Third Thursday, 7 p.m.Starting March 2012No February Meeting504-322-3781Janice Naquin, Leader1000 W. Esplanade Ave.Metairie, La. 70005(Library # for directions.)504-838-4375

MONROELast Thursday, 12 NoonGlenwood Med. Mall, Community Room102 Thomas Road West MonroeLynn Armet, Leader

NEW ORLEANSWest Bank JestersFirst Friday of each monthat 10:30 a.m.Gretna Community Center1700 Monroe St.Gretna, La. 70053Diane Orlesh, Leader,504-394-5623Kim Maloz, Co-Leader,504-394-2274First time visitors shouldcall Diane or Kimto confirm location.

MID-CITY NEW ORLEANSNewly Diagnosed GroupOchsner – Baptist Campus4429 Clara St.New Orleans, La. 70115Conference Room – Krew Room 310Second Monday6 to 7:30 p.m. starting September 12thMimi Jalenak, Leader504-861-0859For directions callOchsner Dept. of Neurology 504-842-3980(M– F, 8 a.m. – 5 p.m.)

* Metairie SHG seekingLeader and Co-Leader


SuPPORT GROuPS

RUSTONSecond Saturday,10:30 a.m. to 12 NoonHealth SouthEzell Street(across from Green Clinic)Barbara McIntyre, Leader, (318) 243-1858Sherry Lewis, Co-Leader

SHREVEPORTFirst Tuesday, 6 p.m.Willis-Knighton HospitalSteen Hall Eye Institute2611 Greenwood Rd.(corner of Greenwood and Hearne Ave.)Linda Galloway, Leader

VINTON, LAKnights of Columbus1424 Grace AvenueVinton, La. 70668Second Saturday10 a.m. – 11:30 a.m.Elaine Briggs, Leader337-309-5124

SuPPORT GROuPS


Self-Help Groups Offer BothIn-Person and Phone Supportby 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.

To find a group that meets in-person near you, call the National MS Society at 1-800-344-4867.

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:

Susan LaCombe is Programs and Services Manager in the Society’s Dallas office. She can be reached at [email protected].

Phone Group Name Meeting Day/Time Call-In NumberHome is Your Range First Wednesday of each

month1 p.m. CST

1-888-346-3659 (enter code 1073 when prompted)

MS and CancerGroup contact,Margaret [email protected]

Fourth Wednesday of each month3 p.m. CST

1-888-346-3659 (enter code 1073 when prompted)

Cafe con Leche: Conversations and Support for People Living with MS Monthly telephone group in Spanish

Stay at Home Support for those living with MS for five years or more

Tuesdays1 to 2:30 p.m. CST

Third Wednesday of each month11 a.m. CST

1-888-346-3659(enter code 64552 when prompted)

1-888-346-3659(enter code 64552 when prompted)


HEALTH TIPS

Five Quick Tips for Dealing with Claustrophobia during your MRI Exam

When a doctor orders an MRI examination, many patients immediately begin to feel “anxious” about the exam due to the shape of the MRI scanner and their ability to remain still during the procedure. Frequently patients have reported being in a scanner for an hour or more for the whole procedure. Patients fully understand that holding still for the exam will provide their doctor with “clear pictures” so that they may provide them with the best clinical treatment available. With modern MRI systems of at least 1.5 Tesla, an MRI exam can usually be conducted in about 30 minutes and on ultra high field 3 Tesla systems can take as little as 10 minutes depending on the exam. 1. Speak with the MRI

technologist who is going to do your exam and be sure they understand you suffer from claustrophobia. Frequently

the person who is operating the scanner is not the same person who will interview the patient prior to the exam. Ask the operator to speak to you prior to and during the exam utilizing the

communications system. In most cases this is accomplished via a set of headphones. 2. Get comfortable on the table

All MRI systems are built to facilitate patient comfort by providing lots of pads and supports so that the patient can be fully comfortable during the exam. Patients who are comfortable and can communicate clearly with the operator during the course of the exam usually can complete the exam. 3. Have a friend or relative in the MRI

exam room with you. This person will have to be screened for

metal even though they are not in the scanner, but frequently this technique is of great comfort to the patient. 4. If available, ask the operator for the “squeeze ball” call system.

This will allow you to immediately notify the technologist should you become anxious during the exam. 5. If all else fails, speak with your doctor or the imaging facility about medication.

This should be done ahead of time and in most cases, you will have to have someone to provide transpiration after the exam is completed.

Images courtesy of Doctors Imaging

LOuISIANA PROGRAMS


Keep Your Expenses fromBecoming 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 driveHome 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.

ALExANDRIA – MS AQuATICSYMCA-Alexandria, 1831 Turner St.Call Emmy Partain, program coordinator, for details at 318-445-8261. BATON ROuGE – MS CHAIR AEROBICSBaton Rouge Self Help Group Meetings on occasions with Donna Hildebrandt. COVINGTON – MS YOGAStar Fitness Center in Covington. MS participants can participate without being members of center at a cost of $5 per class. LAFAYETTE – MS CHAIR YOGAOur 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 AQuATICSOur 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 AQuATICSEast 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 AQuATICSWillis-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.

Wellness Program reminders!


FAMILY PLANNING

Preparing for Pregnancy Helps Avoid the Drama of Becoming a Mama

The good news about planning a pregnancy when you have MS is that there’s no evidence that MS has any effect on fertility. Pregnancy

usually reduces exacerbations,

although flares do tend to increase postpartum, and good outcomes are

the norm.Nevertheless,

making the decision to get

pregnant can be complicated, primarily because of the physical challenges of MS. Said Barbar Green, M.D., director of the West County MS Center in St. Louis, “I also suggest women think about and discuss with their partners the emotional and financial challenges of raising a child, which could affect work and managing the disease.”

None of the disease-modifying drugs (DMDs) are approved for use during pregnancy and most should not be taken for a few months beforehand. Plan a discussion with your neurologist about when to stop DMDs and when, after delivery, to begin them again.

“Until recently, most studies were neutral

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 medications in the discussion with your doctor. From bladder problems to fatigue, pregnancy can make MS symptoms worse, yet many meds are not safe for pregnant women. “We advise people on non-pharmaceutical approaches: getting enough sleep, adjusting work schedules and exercising,” said Dr. Green.

“Symptoms during pregnancy are probably not MS. Tiredness doesn’t mean your symptoms are coming back,” said Eileen Davis, APN, who has worked with people with MS for 12 years in New Jersey and New York. Keep exercising, she recommended, “so you aren’t carrying unnecessary weight post-pregnancy, which can affect symptoms such as falling.”

Connect your obstetrician and neurologist to coordinate your care. If anesthesia is part of your birth plan, arrange a meeting with the anesthesia team. All forms of anesthesia are considered safe for women with MS.

Don’t wait to plan for what happens after delivery. Tap family members and friends about helping with housework, preparing food and, of course, watching the baby.

Check out the Society’s collection of videos, books, booklets and Web pages – available at nationalMSsociety.org/pregnancy – that you can download. You can also call the Society at 1-800-344-4867 (press 1) for free printed copies.


LOUISIANA MS ACTIVISM

Success in 2011 and Exciting Developments on theHorizon for 2012!

Louisiana Public Policy Day 2011The work that MS Activists began during

the 2011 Louisiana Public Policy Day laid the foundation for the successes achieved during the most recent legislative session.

On that day, 50 of our most passionate MS Activists came together to build their activ-ist skills in preparation for efforts that would take place during the legislative session. National MS Society staff, Government Rela-tions Committee (GRC) members, and state officials all contributed valuable insight and coaching to the activists in attendance.

Rep. Juan LaFonta (D-New Orleans), who authored HB 345, our priority bill, addressed attendees and answered questions. His words inspired and energized attendees as they headed off to meet with their represen-tatives.

In-person visits allow activists to partici-pate in dialog about critical issues and are key to building relationships with state law-makers. Activist visits raise awareness about MS, and can make a significant difference in the path that a piece of legislation takes toward becoming law.

For example, MS Activists who visited with Rep. Steve Pugh (R-Ponchatoula) discussed the importance of ensuring consistent terms for prescription drug coverage through the life of an insurance contract. As a result of their visit, Rep. Pugh agreed that this should be a priority and offered his support of HB 345 to his constituents.

In other visits with state officials, MS Ac-tivists spoke to their representatives about

continued funding for essential supports like community based services, Medicaid pro-grams, and long-term services and supports.

At the end of the day, National MS Society and MS Activists were proud to be recognized in the Louisiana House of Representatives.

Louisiana activists who participated in Day at the Capitol deserve credit for the suc-cesses achieved during the 2011 Legislative session, and the work they began on that day surely laid the groundwork for future accom-plishments.

MS Activists Engage to Protect Access to Prescription Drug

MS Activists were there as HB 345, our pri-ority legislation to prohibit mid-year increas-es to prescription drug co-pays, made its way through the legislative process. The MS Ac-tion Network made it possible for hundreds of Louisiana activists living with MS commu-nicate with their state officials about their ex-periences with high cost, disease-modifying and symptom management drugs.

MS Activist Mary Gramlich of Ponchatoula was among those who testified before the House Insurance Committee to ask Represen-tatives to vote in favor of HB 345. Mary ex-plained that, like many Louisianans with MS, she works very hard to stick to her modest budget in order to make her monthly health insurance premiums and prescription drug co-insurance.

Her testimony was a powerful tool in gaining the committee’s support for the bill and building momentum for its passage. HB 345 passed in the House of Representatives with an impressive 81 – 5 vote.

In the Senate HB 345 was championed by Senate President, Sen. Joel Chaisson (D-

Lulling). Sen. Chaisson’s testimony about his personal connection to MS and the impor-tance 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 2012We 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, MSSMCDirector, Programs & Services, Louisiana


LOUISIANA MS ACTIVISM

SAVE-THE-DATE3rd Annual Louisiana Public Policy DayWednesday, April 11, 201210a.m. – 2p.m.Louisiana State Capitol RotundaAgenda will include MS Activist Training and Legislative visits.Lunch will be provided.

12th Annual Bayou MS Health FairSaturday, May 19, 20129a.m. – 2p.m.St. Martin’s Episcopal School, Solomon TheaterMetairie, La.

MS Getaway Weekend RetreatFriday, June 1 – Sunday, June 3, 2012Wesly Conference CenterWoodworth, La.

70% Report Walking Difficulties asMost 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.

TOLL FREE NUMBER 1 800 344 4867 | 11

RESEARCH

National MS SocietyNational Multiple Sclerosis Society - Louisiana4613 Fairfield St.Metairie, LA 70006

FORWARDING SERVICE REQUESTED

NON-PROFIT ORG.U.S. Postage

PAIDMetairie, LAPermit # 242

Walk MS Shreveport-Bossier City- March 10, 2012 at the Louisiana BoardwalkWalk MS New Orleans- March 24, 2012 at Audubon Park (Shelter #10)Walk MS Baton Rouge- March 31, 2012 at Perkins RoweVirtual Walk MS- Anywhere, Anytime

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

Walk MS Shreveport-Bossier City- March 10, 2012, at the Louisiana BoardwalkWalk MS New Orleans- March 24, 2012, at Audubon Park (Shelter #10)Walk MS Baton Rouge- March 31, 2012, at Perkins RoweVirtual Walk MS- Anywhere, Anytime

Sign up today for Walk MS!

msconnection: louisiana winter 2012

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