MS Connection - Fall Edition 2013 by National Multiple Sclerosis Society, Gateway Area Chapter

FALL 2013 GATEWAY AREA CHAPTER

MS CONNECTION MAGAZINE

AND

INSIDE 2 THIS ISSUE

A WORD FROM THE NEW CHAPTER PRESIDENT

4-5 ANALYZING THE PROS AND CONS OF VITAMIN D

10-11 23 TRIO OF FRIENDS HAVE UNIQUE FUNDRAISER

STAYING MOTIVATED AND MOVING WITH ZUMBA

MS CONNECTION: FALL 2013

INSIDE THIS ISSUE Connections................................................. 3 Analyzing Vitamin D................................ 4-5 John L. Trotter Research Program................. 5 Coordinators Play Vital Role....................... 6-7 Clinical Trials............................................ 8-9 DIY Fundraising....................................10-11 MS Research..........................................12-13 Ask The Professional...................................14 CarePartner Column..............................16-17 Research On The Road...............................17 Health Insurance Marketplace....................18 FAQ About Medicaid..................................19 Volunteer Column..................................... 20 Zumba and MS.......................................... 23 Camp Hope................................................25 Creative Art Group.................................... 27 Talk MS Groups................................... 28-29 Therapeutic Recreation...........................31-33 Young Professionals Group......................... 34 Wellness Network...................................... 34 Chapter Calendar........................................35 Program Registration..................................35 Midwest Teleconference Series................... 36 Publication of the National Multiple Sclerosis Society

Contact Us at: National MS Society, Gateway Area Chapter | 1867 Lackland Hill Parkway, St. Louis, MO 63146 | 314-7819020 | 1-800-344-4867 | gatewaymssociety.org MS Connection © 2013 A quarterly magazine published by the National Multiple Sclerosis Society, Gateway Area Chapter. Writers • Julie Belzer • Joe Cavato • Meghan Freeman • Sharon Greene • Ellen Mowry, MD • Barry Singer, MD • Karen Tripp • NOTICE: The Gateway Area Chapter of the National Multiple Sclerosis Society is proud to be a source of information about multiple sclerosis. Our comments are based on professional advice, published experience, and expert opinion, but do not represent therapeutic recommendations or prescriptions. For specific information and advice, consult a qualified physician. The National Multiple Sclerosis Society does not endorse products, services, or manufacturers. Such names appear here solely because they are considered valuable as information. The National Multiple Sclerosis Society assumes no liability whatsoever for the contents or use of any product or service mentioned.

LETTER FROM THE PRESIDENT To my soon to be family at NMSS, As a native and very proud St. Louisan, I look forward to my new role in joining such a successful team as Chapter President of the outstanding Gateway Area Chapter.

REBECCA FEHLIG I hope you don’t mind that I refer to you as my family already, for there are so many of NEW CHAPTER you I haven’t had the pleasure to meet, but PRESIDENT in my previous career where I served a very meaningful mission, my colleagues, volunteers and I learned quickly that a role in which you serve a mission that is so much larger than you, will change you and becomes very personal. And one of our greatest allies in creating a world free of MS is to be comfortable in allowing a mission to take on more than just a segment of your life. It’s not just a job, or a day of volunteering or a bike ride. To create a world free of MS, we need to come to the table drawing on all of our resources... time, experiences, treasure, friends, family, compassion, and possibly most important, inspiration. And to my inspirations, Kate, Mary and Tami: As with any significant undertaking and responsibility, inspiration is critical or you may never get the courage to take on something so important. You inspiring women are parents, professionals, wives, daughters, sisters first....and doing a heck of a job at those, I might add. MS is just an unexpected (and unwanted) passenger on your journey through life. I watch in admiration on the sidelines as you do everything in your power to make sure it doesn’t define you, but you allow it to give a useful perspective on life. And I also watch knowing that no matter how much I research and ask questions about MS, I will never completely understand what each of you experience every day. My professional career with Autism Speaks for the last seven and a half years, my formal training via an M.A. in Nonprofit Management at Washington University and inspiration of friends and family with MS have brought me here. I am eager to roll up my sleeves in support of a stronger chapter and mission. With Gratitude, Rebecca

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LIVING WITH MS

CONNECTIONS

LEARN. NETWORK. GROW. Connections is a program that enables people

living with MS to meet others who deal with similar situations. Participants also hear from an expert on the disease. They can listen and ask questions to gain insight on Aubagio, as well as progress in research to help find a cure for MS.

OCTOBER 8, ST. LOUIS, MO, 5:30 P.M. Hilton Garden Inn, St. Louis Airport 4450 Evans Place St. Louis, MO 63134

SPEAKER: Daniel Wynn, MD, FACN, FAASM Director of Clinical Research Consultants in Neurology, Ltd Director, Consultants in Neurology Multiple Sclerosis Society, Northbrook, IL

OCTOBER 15, MARION, IL, 5:30 P.M. Mackieâ&#x20AC;&#x2122;s Pizza 2704 Walton Way Marion, IL 62959

SPEAKER: Florian Thomas, MD, PhD Director, St. Louis VA Regional MS Center of Excellence Director, National MS Society Multiple Sclerosis Center Professor of Neurology Saint Louis University

Imani, diagnosed in 2006

REGISTRATION REQUIRED: These programs are free but call 800-3444867 or go to gatewaymssociety.org g Chapter Calendar to register.

SAVE THE DATE FOR CONNECTIONS PROGRAMS COMING TO YOUR AREA

January 16, St. Charles County, MO January 30, North St. Louis County, MO April 1, Hannibal/New London, MO April 8, Highland, IL

MS CONNECTION: FALL 2013

RESEARCH

ANALYZING THE PROS & CONS OF VITAMIN D BY ELLEN MOWRY, MD ASSISTANT PROFESSOR OF NEUROLOGY JOHNS HOPKINS UNIVERSITY

What we have seen in the past decade is increased interest in vitamin D as it relates to MS. First studies demonstrated that having lower levels of vitamin D were associated with increased risk of later developing MS. We first studied children with MS (others have since shown this in adults) and showed that lower of vitamin D are STOPPING levels linked with a higher risk MS of having attacks. More recently, we have shown that lower levels of vitamin D are also associated with developing new MS “spots” on the brain in MRIs. What we don’t know is whether taking vitamin D will actually help. People often say, “it’s a vitamin - it can’t hurt, right?” But, vitamins are medications too. We are using them to see if they will affect a disease. Vitamins and supplements, just like other medications, can be harmful to health in ways we may not appreciate until we study them very carefully. That’s why we are doing more careful investigations of vitamin D supplementation in people with MS.

WHAT IS VITAMIN D Vitamin D is a hormone that, for the most part, humans get from sunlight. There are some foods that are fortified with vitamin D

as well; although, it’s not clear if we truly get “enough” vitamin D from these fortified foods. One of vitamin D’s chief roles is to keep the levels of calcium in the blood in balance. However, vitamin D also seems to have other important roles, including keeping the immune system functioning properly.

DR. ELLEN MOWRY IS STUDYING HOW TAKING DOSES OF VITAMIN D AFFECTS PEOPLE LIVING WITH MS.

HOW MIGHT VITAMIN D BE HELPFUL

Vitamin D is thought to help “cool off” the immune system. We know that in autoimmune diseases, like MS, the immune system turns on parts of the body and attacks. The “sophisticated” part of the immune system has one part that promotes inflammation and another that steers away from inflammation. There should be some balance, but like a seesaw, in MS, the system is shifted towards more inflammation. Vitamin D has been shown to possibly restore some of that balance. It may also help at the level of the “less sophisticated” part of the immune system.

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VITAMIN D RESEARCH PROJECT The most important project we’re working on is a large, multi-center clinical trial of vitamin D supplementation in MS. Everyone in the study gets an approved MS medication, glatiramer acetate (Copaxone). Half the people are then assigned to a high dose of vitamin D (5000 international units/day), while the other half take the recommended daily allowance (600 international units/day). We are following these participants for two years to evaluate if vitamin D helps slow down attacks or new MS “spots” on the MRI. We are actively enrolling willing MS patients who meet all the study criteria into the vitamin D supplementation trial. The timeline depends on how long it takes to recruit all of the patients. We’re more than a third of the way there, and we’re hoping to be finished recruiting in the next six months or so. After the last person completes the two-year study, we have to make sure all the data have been collected and then can present the results.

WHAT IT COULD MEAN FOR PEOPLE LIVING WITH MS If vitamin D is shown to be helpful, most people with MS will likely be recommended to take it. We are studying to see if vitamin D helps prevent attacks/relapses, new MS “spots” on the MRI, or even loss of brain tissue on the MRI, which we think is a predictor of longterm disability (and is not something that gets routinely measured).

JOHN L. TROTTER RESEARCH PROGRAM

THE ABC’S OF VITAMIN D AND MS SATURDAY, NOVEMBER 16, 10 A.M. SPEAKER: Dr. Ellen Mowry Assistant Professor, Neuroimmunology Johns Hopkins University St. Charles Convention Center 1 Convention Center Plaza St. Charles, MO 63303 Cost: $12/person

Call 800-344-4867 or go to gatewaymssociety.org g Chapter Calendar to register.

CAN VITAMIN D BE DANGEROUS

There is the potential that vitamin D could be harmful. Vitamin D can increase blood or urine calcium levels, which could lead to kidney stones or heart rhythm problems. It is also possible that there are many other negative effects we don’t know about yet because it hasn’t been studied well. I always recommend that people check with their doctor about whether or not they should take vitamin D. n

MS CONNECTION: FALL 2013

RESEARCH

COORDINATORS, PATIENTS PLAY VITAL ROLE IN PROGRESS

Susan Fox, a research coordinator for pharmaceutical studies at Washington University, knows that by interviewing patients, collecting blood work and completing paperwork, among other duties, she plays a key role in helping develop new treatments and medications for people living with MS. “I have been doing research for 10 years. It’s my life calling,” Susan said. “Without research and people doing these types of things, there would be no new drugs to help people. I feel it’s important. This is the direction I have chosen and I am just going to stick with it. I like MS research because there is always something new in development.” Many times, people enrolled in clinical trials look to research coordinators, like Susan, for answers about their involvement in trials. “Once they come in and meet us it puts patients at ease,” Susan said. “They know they can call us whenever they want, with any problems, and we’ll talk things out with them.

DOCTORS IN THE LAB AREN’T THE ONLY ONES WHO HELP MOVE RESEARCH FORWARD AS COORDINATORS AND PATIENTS PLAY VITAL ROLES.

“YOU CAN DO SMALL THINGS LIKE DONATING BLOOD, OR YOU CAN DONATE YOUR TIME FOR A LARGER STUDY THAT CAN BE FIVE YEARS’ WORTH OF VISITS. THERE’S QUITE A RANGE. People are very good about asking questions.” Some of those questions are about insurance, confidentiality and what their time commitment might be. “A lot of people want to know, if they get involved and go into a clinical trial, how it will work with doctors’ visits and insurance,”

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Susan said. “In most Participating in clinical Trials clinical trials, if they are sponsored by the drug company, everything is paid for. You don’t have to report to your insurance all of those visits. There is no GO TO NATI ONALM SS OC IETY.O RG g negative affect on RE SEAR CH gCLIN IC AL TR IALS FO R your insurance.” M OR E A Guide for Peo ple with MS

ON TR IALS IN CLUD IN G A GU ID E FO R POTE NTIAL PART IC IPANTS.

If one enrolls in a clinical trial, it doesn’t mean they have to let everyone know they live with MS. “I think a lot of people worry about everybody they know learning that they have MS,” Susan said. “We assure participants that we’re not putting their name out there. You get assigned a study ID number and everything that gets translated between us and the drug company is done so with that number.” There are many ways to be involved in research – some of which don’t involve a huge time commitment. “You can do small things like donating blood, or you can donate your time for a larger study that can be five years’ worth of visits that are eight-hour visits every three months,” Susan said. “There’s quite a range.” While the research and getting data is the reason for clinical trials, they aren’t done at the expense of the patients’ health.

VITAMIN D TRIAL AT WASHINGTON UNIVERSITY This research study will evaluate whether or not vitamin D when given with Copaxone reduces the rate of relapse in two years. Eligible participants will be randomized to receive either low-dose or high-dose vitamin D (oral) with Copaxone. Copaxone and vitamin D are provided as part of the study. PARTICIPANT CRITERIA: 18-50 years of age, with a diagnosis of relapsing MS, who have had one attack and one or two new lesions on MRIs in the past year, or have had two clinical attacks within the last two years, one of which was in the past year. CONTACT: Susan Fox, Research Patient Coordinator/Professional 314-362-2017, foxs@neuro.wustl.edu

SEE PAGES 8-9 FOR MORE CLINICAL TRIALS OR GO TO GATEWAYMSSOCIETY.ORG g MS RESEARCH g PARTICIPATE IN LOCAL TRIALS & STUDIES.

“People have a lot of questions - ‘it going to help me or is it going to hurt me?’ and you can’t really tell them that,” Susan said. “We want them to come into the trial healthy and leave the trial healthy.” n

MS CONNECTION: FALL 2013

RESEARCH

CLINICAL TRIALS ENROLLING PATIENTS PREFER MS STUDY: FTY720DUS09: A 12-month, prospective, randomized, activecontrolled, open-label study to evaluate the patient retention of Fingolimod vs. approved first-line disease modifying therapies in adults who are in early stages of treatment for relapsing remitting multiple sclerosis (PREFERMS). Contact Susan Eller, MA, RN, CCRC, 314-977-4867, ellersc@slu.edu. ASSESS MS Study: FTY720D2312: A 12-month, randomized, rater-and doseblinded study to compare the efficacy and safety of fingolimod 0.25 mg and 0.5 mg administered orally once daily with glatiramer acetate 20 mg administered subcutaneously once daily in patients with relapsing-remitting multiple sclerosis. Contact Susan Eller, MA, RN, CCRC, 314-977-4867, ellersc@slu.edu. DALFAMPRIDINE (AMPYRA 速) AFTER OPTIC NEURITIS TO IMPROVE VISUAL FUNCTION IN MULTIPLE SCLEROSIS: The purpose of this research study is to evaluate if a drug called Dalfampridine (Ampyra 速) may help improve vision function in 50 people with MS whose vision is known to be affected. Participant Criteria: 18-70 years of age with a diagnosis of MS and have stable optic neuritis (cannot have had optic neuritis flare up in last 12 months), no history of seizure or kidney problems and have not had any disease activity within the last 3 months. Length of Trial: 8 weeks. Sponsor: Acorda Therapeutics

Location of Trial: John L. Trotter MS Center, Washington University School of Medicine, 660 S Euclid Ave #8111, Saint Louis, Missouri 63110. Contact: Samantha Lancia, Research Patient Coordinator/Professional, 314-747-5576, lancias@neuro.wustl.edu MS SENSOR STUDY Eligible subjects will undergo a full neurological examination during their regular clinic visit to generate an EDSS score. Subjects will remain in clinic for 20-30 additional minutes to undergo testing while wearing motion sensors on their wrists, ankles, waist, and chest. The tests performed will measure range of motion and walking ability. There is no follow-up testing for this study. Eligibility for MS sensor study: To be included in this study, individuals must be 18 or older, have a diagnosis of MS, and an EDSS score of 0-6.0. Exclusion criteria includes any confounders that, in the opinion of the physician, could affect ambulation (i.e., vision impairment, pregnancy, lower extremity orthopedic conditions that limit ambulation, morbid obesity, etc.). Contact: Samantha Lancia, Research Patient Coordinator/Professional, 314-747-5576, lancias@neuro.wustl.edu

CLICK HERE FOR MORE CLINICAL TRIALS.

PA I D A D V E R T I S E M E N T

An Oral Treatment Option for Relapsing Forms of Multiple Sclerosis (MS) An informative event for people living with MS, and their caregivers Speaker

• Barry Singer, MD, Director, MS Center for • A national MS Expert Innovations in Care • A• Person with RRMS A Person with RRMS

Date & Time October 12, 2013 09:00AM – 1:00PM

Location

Hilton St. Louis Frontenac 1335 South Lindbergh Boulevard, Saint Louis, MO 63131

A light meal will be served

Space is limited. To RSVP:

By Phone: 1-866-703-6293 By Email: MSRSVP@ahmdirect.com Event Code: _OCT12STL_________

MS.US.PO1634.0413 PA I D A D V E R T I S E M E N T

MS CONNECTION: FALL 2013

DO IT YOURSELF EVENTS

QUIT PLAYING GAMES (WITH MY FUNDRAISING) When John Simon was diagnosed with MS in 2008, at age 29, he decided to stay positive, be himself and keep his sense of humor. “Obviously, MS is a serious matter, but this situation really sums up John’s endearing personality and why he has such a close network of friends and family,” said John’s good friend Tony Cerame. “He knew it wouldn’t be easy for us to take the news and disarmed the situation by continuing to be who he is – one of the funniest and most genuine friends we have.” For the most part, John has been symptom free since his diagnosis. They wanted to do something for MS. So John and Tony put their heads together, along with a little help from their friends, and came up with a very unique Do It Yourself (DIY) Fundraiser idea – going to a concert that is so bad, you should be paid to attend…sober. “Coming up with the idea for the fundraiser, though, is a lot more than one person thinking of a joke,” Tony said. “It was a creative process that grew from a dumb joke into something bigger by involving many people.”

THREE FRIENDS, JOHN SIMON, JASON STRUTTMANN AND TONY CERAME RAISED MORE THAN $7,500 IN THE LAST TWO YEARS BY ATTENDING ‘LESS THAN DESIRABLE’ CONCERTS LIKE CREED AND THE BACKSTREET BOYS. FOR MORE, GO TO CROWDRISE. COM/BSB4MS. JOHN LIVES WITH MS. In 2012, they tested the waters with one of the worst concerts they could think of – Creed. Tony proposed seeing the group after hearing the lead singer was in St. Louis to perform at a local casino. “We sat and wondered just how terrible that show must be,” John said. “Tony mentioned trying to get people to pledge money to make someone sit through that pile of garbage for a good cause. Choosing MS was a pretty easy decision.” They set the bar high last year with their Creed

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4 MS fundraiser, which raised $3,146. When the boys learned the Backstreet Boys were coming to town with one of the cast members on MTV’s Jersey Shore, they figured there was no question this was the show they had to see. Tony, John, and their friend Jason Struttmann returned to the fundraising site CrowdRise. They offered incentives with each fundraising tier, such as shaving and dyeing a chinstrap beard, frosting their tips, and even going as far as getting spray tans. “The spray tan was totally weird, and I don’t know how people repeatedly get those things,” Tony said. “With that said, it was one of the funniest things I ever did.” On the evening of the concert, August 3, 2013, the boys were in for a treat. Because of their “guido/Jersey Shore” style get-up, they got a lot of attention from the many women in attendance. “The first 45 minutes or so were completely surreal,” John said. “We were rock stars. I think the three of us were enjoying ourselves.” “Can I say it wasn’t torture and still convince people to send us to one of these next year?” Tony said. “The music certainly didn’t help, but it wasn’t bad enough to ruin a couple of great nights with some great friends.” So far, they have raised more than $4,400 for their BSB4MS fundraiser.

11 Of course, the boys’ taste in music is subjective. Although they received a few negative comments from some avid Creed fans last year, this year’s feedback was mostly positive. “A lot of our friends have been very supportive and truly excited to be a part of it,” Tony said. “We’ve made a number of new friends along the way and received some random messages and emails from people all over.” Even though this fundraiser began as a fun way to support the cause, it now means much more to these young men. “The most important feedback is how many people contact me and tell me about their experience with MS,” John said. “I’ve become much more aware of how many people the disease actually affects. I’ve come to further appreciate what the National MS Society does.” Tony believes the key to a successful DIY fundraiser is to think of something that is funny and will keep people engaged through the entire process – like fundraising tier incentives. “The basis for our success has been finding a way to make things fun for the donors and keeping them involved from the point of awareness to the end, when we go to the show,” Tony said. “We found something different from your typical fun-runs/marathons/auctions, and while it may not appeal to everyone, the fact that it’s unique drives its success.” n

MS CONNECTION: FALL 2013

RESEARCH

FOCUS ON MS RESEARCH A joint meeting held May 29 to June 1 by the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee on Treatment and Research in Multiple Sclerosis (ACTRIMS) showcased the latest directions in MS research. Here is a selection from more than 200 presentations on research seeking to stop MS in its tracks, restore function to those who have MS and to end the disease forever.

STOPPING MS Researchers at the Colorado Blood Cancer Institute in Denver reported two-year results on a study following 24 people with highly active relapsing-remitting MS who were treated with bone marrow transplantation. Both relapses and disease activity observed on MRI scans were significantly reduced; however, there was significant loss of brain volume the first year, which then stabilized, and one person died. Other adverse events included excessive levels of uric acid and liver enzymes and decreased potassium levels. Participants are being followed for a total of five years, and additional research is needed to determine the risks and benefits for people with MS involved in this experimental procedure.

A study at the University of California, Los Angeles, tested whether male and female sex chromosomes influence the response of the nervous system to injury. In female mice genetically engineered to express the male (XY) or female (XX) chromosome, XY mice experienced a more severe MS-like disease. However, immune responses did not differ. If confirmed in further studies, such findings may help to explain why MS progression occurs faster in men, even though MS is more common in women.

RESTORING FUNCTION Three separate studies reported results on issues with falling. â&#x20AC;˘ Debra Frankel, Vice President, Programs, Services and Clinical Care at the Society, reported that participants in the Societyâ&#x20AC;&#x2122;s Free From Falls program improved in balance and walking, and the psychological impact of falls was reduced, even six months after the program. (For more on how to participate in the Free From Falls program, call 1-800-344-4867, or visit www.national MSsociety.org/freefromfalls.)

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• At the University of Illinois at UrbanaChampaign, researchers found that fall risk decreased significantly and balance improved in 10 people with MS who participated in a 12-week, home-based exercise program, compared with 12 people who did not participate. The Society is funding a continuation of the study to determine how exercise can be used to prevent falls in people with MS. • Researchers at the Oregon Health and Science University in Portland found that in 53 people with MS taking a range of medications, those taking no medications had a 27% risk of falls and that the risk of a fall increased 33% with each additional medication. Larger studies are needed to confirm how medications might affect the risk of falling, so that clinicians can consider this important aspect of MS management. • A Society-funded study at the University of Illinois at Urbana-Champaign found that video-chat sessions with a behavior change coach improved results of a six-month physical activity program among participants. The results also showed reduced fatigue, depression and anxiety.

RESTORING FUNCTION • Investigators at Endece, LLC reported that the molecule NDC-1308 reduced cell death in the spinal cord of mice with an MS-like disease and activated genes important in the development of myelin-making cells. The company is supporting preclinical research to develop NDC-1308 as a possible future treatment for repairing damage in MS.

ENDING THE DISEASE FOREVER • A Society-funded study at University of Miami found that 287 Hispanics/Latinos with MS were more likely to experience symptoms of motor weakness, ataxia (problems with muscle control) and bladder problems when compared to 275 nonHispanic whites with MS. Hispanic/Latinos also responded more favorably to interferon treatments. For MS resources in Spanish and information about Hispanics/Latinos living with MS, visit mueveteMS.org. • A study at University of Utah, Salt Lake City, using a new technique called “deep sequencing,” found that the activity of genes that instruct retroviruses was significantly increased in 14 people with primary-progressive MS. Further studies in larger numbers of people to determine the significance of these findings are about to get underway with Society funding. • Data collected from the Sonya Slifka Longitudinal MS Study, established by the Society in 2000 to study demographic and disease characteristics, use and cost of health services, access to care, quality of life, treatment and much more, is being made available to qualified investigators for studies on the direct and indirect costs of MS. These include the financial impact of out-of-pocket costs, informal caregiving, pregnancy and mental health treatment. n

MS CONNECTION: FALL 2013

ASK THE PROFESSIONAL

CAN DISABILITY FROM MS BE REVERSED? An exciting approach is remyelination, a process in which new myelin is made. The myelin coating on nerve cells allows messages to travel rapidly from the brain down the spinal cord. Loss of the myelin coating can delay or block the messages getting to where they need to go. Chronic myelin loss may actually cause some nerve cells to slowly die.

is formed from RESTORING Myelin cells called oligos (short FUNCTION for oligodendrocytes)

that wrap around and around multiple nerve cells. In MS, the immune system attacks myelin, causing temporary or permanent myelin loss.

In the human brain, 5-8% of cells have the potential to develop into myelin-making oligos. These immature cells are called OPCs (oligodendrocyte precursor cells). So how do we get these OPCs to create new myelin and repair old damage? One step is trying to make more of these OPCs. Growth factors, such as PDGFAA, can stimulate the OPCs to divide and multiply. Another approach is attracting the potential myelin-making cells into the MS plaques. Semaphorin-3F, for example, is a protein that can attract OPCs to areas of loss of myelin. Chemokines are other compounds that can help OPCs to move into a plaque for remyelination. Removing factors that block remyelination

is a another way to try to repair myelin. High levels of LINGO-1, for example, prevent OPCs from maturing and making myelin. An antibody to LINGO-1 allowed for remyelination to occur in animal models and is now being tested in human clinical BARRY SINGER, M.D. trials. Other antibody DIRECTOR therapies are being developed that stimulate THE MS CENTER FOR remyelination in animal INNOVATIONS IN CARE models. Whether these strategies will be effective and/or safe remains to be determined. Research has led the way to effective treatments that reduce the immune attack against the brain, spinal cord and optic nerves. However, MS still causes increasing disability for too many people. While a cure is paramount, myelin-repair strategies will be an important frontier over this decade in the attempt to restore function. n

FOR MORE RESEARCH UPDATES FROM DR. SINGER BLUE, READ HIS BLOG AT WWW.MSLIVINGWELL.ORG OF FOLLOW HIM ON TWITTER @DRBARRYSINGER

PA I D A D V E R T I S E M E N T

You’re invited to join us at a Novartis MS Education Link Event Hear a medical specialist share information about multiple sclerosis (MS), learn about a prescription treatment option, and connect with people in your community living with MS.

Featured Specialist:

Heather Popham, RN, NP-C 9/12/13 at 6:00 p.m. Sunset 44 118 West Adams Avenue Saint Louis, MO 63122

Florian Thomas, MD 10/14/13 at 5:30 p.m. The Pier 401 Bonsaninga Drive Quincy, IL 62301

Featured Specialist:

Featured Specialist: Barbara Green, MD 10/30/13 at 6:00 p.m. Old Spaghetti Factory 17384 Chesterfield Airport Road Chesterfield, MO 63005

Heather Popham, RN, NP-C 10/17/13 at 6:30 p.m. Cowan’s Restaurant 114 Elm Street Washington, MO 63090

Tell or bring a friend! Accessible to people with disabilities. Light meal served. Parking will be validated. Space is limited. Please RSVP by calling 1-866-682-7491. Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080

PA I D A D V E R T I S E M E N T

1/13

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MS CONNECTION: FALL 2013

TIPS FOR CAREPARTNERS

ROAD TO A BETTER RELATIONSHIP: TACKLING MS RELATED ROADBLOCK ROADBLOCKS #2 The road to a better couples relationship is much the same for everyone. We all want mutual respect, adoration, healthy communication and love. Couples coping with MS are no different. However MS can create roadblocks which make the path to a better relationship more difficult. Yes, there can definitely be physical and financial hurdles from MS but these are not the biggest threats to a couple’s relationship. The largest threats come from misconceptions or roadblocks which can deceive a couple into believing a relationship cannot move forward. Don’t let these roadblocks side swipe your couple relationship.

ROADBLOCK #1

“They’ll never understand.” When a person undergoes a difficulty such as divorce, grief, or a serious diagnosis like MS, an isolation occurs. It’s so difficult to process what you are going through that it feels impossible for anyone else to understand. The truth is, whether you are the person living with MS or the carepartner, no one can fully understand what you are going through but you. But everyone can understand more. Here’s the question: “Is your relationship important enough to work on building a deeper level of understanding?”

“They are only here because of the MS.” Everyone wants their loved one to be with them because they love and cherish them. KAREN TRIPP, MS LMFT MS brings fears. Carepartners may fear MARRIAGE AND FAMILY that their loved one THERAPIST is only with them so they have someone to care for them. People with MS may fear that their loved one is only with them out of guilt. Finding consistent and persistent ways to acknowledge these fears and reaffirm the relationship is vitally important in any carepartner relationship.

ROADBLOCK #3

“How can I expect anything more?” Partners in a healthy relationship ask for more all the time. “I want more time alone.” “I want more say over the finances.” “I want more help with chores.” Wanting more affection, respect, sensitivity, or conversation are common requests, but with MS, there are many things which will not change making it easy to believe nothing can change- even your relationship. But, change is a constant in every relationship. So, if you are not working to move closer, you might drift apart. Load your relationship up with hope and positive expectations so you can see it thrive.

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A couples relationship filled with roadblocks looks like this: talk less> share less> expect less> want less> receive less. Some couples are able to address these roadblocks head on and move into a more fulfilling relationship. Yet, many couples need help through couples counseling. Too often couples counseling is viewed as an avenue of last resort needed only in a crisis. Actually, couples counseling is excellent for helping couples to side step these roadblocks and learn to thrive. Here are some suggestions for selecting a couples counselor. 1. Select a counselor experienced in working with couples together in session. Couples work is a specialty not all counselors have acquired. 2. Attend one session to decide if this is the counselor for you. Expect at the initial session to be told the counselorâ&#x20AC;&#x2122;s game plan or framework for how they will help your relationship. 3. Many insurances will not cover counseling services. The MS Society may provide limited financial assistance if needed. The MS Society has a referral list of counselors you can call or feel free to contact me with any questions or to schedule an initial session. at Karen@ktripp.com or 314-814-0044. Phone or Skype sessions available. You can do this. You can have a better relationship. n

RESEARCH MS

ON THE ROAD

Research MS is a program that provides updates on current multiple sclerosis research and allows professionals to discuss any new therapies available to people living with MS.

SEPT. 21, CAPE GIRARDEAU, MO, 10 A.M. St. Francis Health and Wellness Center 150 S. Auburn Rd. Cape Girardeau, MO

Guest Speaker: Gregory F. Wu, MD, PHD

Division of Multiple Sclerosis Department of Neurology Washington University School of Medicine

SEPT. 24, MARYVILLE, IL, 6 P.M. Anderson Hospital 6800 State Route 162 Maryville, IL

Guest Speaker: Florian Thomas, MD, PHD

Director, St. Louis VA Regional MS Center of Excellence Director, National MS Society Multiple Sclerosis Center Professor of Neurology Saint Louis University

REGISTRATION REQUIRED: These programs are free. But call 800-3444867 or go to gatewaymssociety.org g Chapter Calendar to register.

MS CONNECTION: FALL 2013

LIVING WITH MS

HEALTH INSURANCE MARKETPLACE FACTS

As part of the Affordable Care Act, every state is required to implement a Health Insurance Marketplace. States can choose to establish their own Marketplace or allow the federal government to operate a Marketplace in the state. Both Missouri and Illinois will have a federally facilitated Marketplace.

WHAT IS A HEALTH INSURANCE MARKETPLACE?

The Health Insurance Marketplace, sometimes called an Exchange, is meant to provide an easy way to purchase health insurance for individuals and small businesses. Each state will have an online portal that will provide an apples-to-apples comparison of private insurance plans. There will also be navigators to assist with choosing a plan. Each plan will have a â&#x20AC;&#x153;metal levelâ&#x20AC;? ranking of platinum, gold, silver, or bronze that is roughly correlated with the cost sharing level of each plan. Every plan in the marketplace has to cover certain benefits, such as preventive services. The plan

level simply indicates how much someone can expect to pay in premiums vs. copays.

WHEN WILL THE HEALTH INSURANCE MARKETPLACE BE AVAILABLE?

Information about specific plan pricing will be available on October 1, 2013 with open enrollment continuing through March 31, 2014. Coverage through the Marketplace will go into effect on January 1, 2014.

WHAT IF I NEED HELP PAYING FOR HEALTH INSURANCE?

Low-income individuals may qualify for Medicaid, which can be determined using the Health Insurance Marketplace. Others whose incomes are between 100% and 400% of the Federal Poverty Level ($14,486 to $45,960 for an individual) will qualify for tax credits when purchasing insurance through the Marketplace. Visit www.healthcare.gov for more information. n

PA I D A D V E R T I S E M E N T

An Oral Treatment Option for Relapsing Forms of Multiple Sclerosis (MS) An informative event for people living with MS and their caregivers. Barbara Green, MD Thursday, November 7, 2013 at 6:00 PM Central Old Spaghetti Factory 17384 Chesterfield Airport Road Chesterfield, MO, 63005

Space is limited. A light meal will be served. To RSVP, please call 1-866-703-6293 or e-mail MSrsvp@ahmdirect.com. Event code: TR221898 (1036297) MS.US.PO1497.0313 PA I D A D V E R T I S E M E N T

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

ADVOCACY

FAQ ABOUT MEDICAID AND EXPANSION WHAT IS MEDICAID?

Medicaid is state paid health insurance for low income individuals and families. It is a joint federal-state partnership with funding provided from both and states administering the program within federal guidelines.

WHAT IS MEDICAID EXPANSION?

Under the Affordable Care Act, states now have the opportunity to expand eligibility for Medicaid to more low income households up to 138% of the Federal Poverty Level (FPL) which is about $32,499 for a family of four. Current eligibility levels vary by state and other individual qualifying factors.

MEDICAID EXPANSION IN ILLINOIS

On July 22nd, Governor Pat Quinn signed Senate Bill 26, which expands Medicaid eligibility in Illinois. An additional 342,000 individuals are expected to enroll through 2017, with enrollment for the newly eligible beginning on October 1 and coverage starting on January 1, 2014.

MEDICAID EXPANSION IN MISSOURI

The State of Missouri is currently considering Medicaid expansion. It is estimated about 300,000 uninsured Missourians would gain coverage through expansion. This is an important issue for individuals who live with MS because 60% of those with MS exit the workforce within 10 years of diagnosis. After the loss of employer sponsored insurance,

without Medicaid, many with MS experience a gap in coverage during the two-year waiting period for Medicare after disability is determined. Medicaid can serve as a critical safety net during that time so that individuals continue to have access to treatment that promotes positive long-term health outcomes.

WHAT CAN YOU DO IN MISSOURI?

We need your story! If you are currently participating in the Medicaid program or would be eligible if it were expanded, please contact us! Policymakers need to hear directly from those who would be most affected by these changes. For more information, please contact Sarah Gentry at sarah.gentry@nmss. org. n

MEDICARE OPEN ENROLLMENT RUNS OCTOBER 15 TO DECEMBER 7

The Medicare Open Enrollment Period this year is October 15 - December 7. During the Open Enrollment period, current or newly eligible Medicare beneficiaries, including people with Original Medicare and/or Medicare Advantage Plan can review current health and prescription drug coverage, compare health and drug plan options available in their area, and choose coverage that best meets their needs. For more information go to www.medicare.gov or call 1-800-MEDICARE (1-800-6334227).

MS CONNECTION: FALL 2013

VOLUNTEER COLUMN

VOLUNTEERING CAN BE INSPIRING BY JULIE BELZER MS AMBASSADOR DEAN TEAM AUTOMOTIVE CHALLENGE WALK MS PARTICIPANT

What motivated me to begin volunteering with the MS Society? I can’t remember! I started participating in Walk MS years ago. Then, I moved on to the Dean Team Automotive Challenge Walk MS. There, I met a man with a Bike MS team so I got involved with that. I’ve gone back and forth from participant to volunteer at Bike MS and Walk MS, but will always remain a participant in Challenge Walk MS. I’ve always gotten a lot of personal satisfaction out of volunteering. I am not a very spiritual person, but always like to think of myself as the kind of person whose actions represent who they are. I haven’t always had a lot of money to donate to a cause, but I always have time. Once my kids were out of high school, I was looking for a place to invest more of my time. Luckily, the Gateway Area Chapter was right there for me! Every time I accept another opportunity to volunteer with the MS Society, I meet another person who amazes and inspires me. I’ve seen people with more strength, more courage and more enthusiasm for life than I know I’ll ever have. They don’t complain; they offer to help. They have loving friends and families. They have struggles that would cause me to quit, but they never give up. They just give more.

JULIE BELZER MS AMBASSADOR DEAN TEAM AUTOMOTIVE CHALLENGE WALK MS PARTICIPANT Most recently, I have been volunteering as an MS Ambassador. This has taken me to a variety of events, educating other people about what the MS Society has to offer, not only for people living with MS, but also for people who want to get involved and volunteer. I’ve handed out a lot of brochures, talked to people, shared stories and hugs. Every time I attend an event I learn something new about how people cope with living with MS. Sometimes, I learn something new about how their loved ones cope with MS. I always learn something that makes me a better person; that makes me want to come back and do more, give more. If you’ve ever thought about volunteering, stop putting it off and get involved. You will never regret it and you’ll gain more than you can imagine. n

Can Do Multiple Sclerosis | ONE DAY

JUMPSTART PROGRAM ®

An educational and interactive program in which you and your support partner gain the knowledge, skills and tools needed to adopt healthy lifestyle behaviors and actively co-manage your MS.

OFFERED AT NO CHARGE

Presentations & Workshops • Strength Training • GPS for Your MS • Managing Family Dynamics • Support Partner Workshop • Interactive Panel with MS Experts

Saturday, October 5, 2013 – St. Charles Convention Center One Convention Center Plaza – St Charles, MO 63303 REGISTER ONLINE AT WWW.MSCANDO.ORG OR CALL CAN DO MS TODAY 800-367-3101 EXT. 1281 Presented by:

In collaboration with:

Supported by:

The Barbara Epstein Foundation EMD Serono/Pfizer Genzyme Corporation Mellam Family Foundation Rolex Watch USA Roy A. Hunt Foundation www.mscando.org | 800 - 367 - 3101

PA I D A D V E R T I S E M E N T

You’re

invited!

Know Your Options: Exploring an FDA-approved treatment for MS relapses

If you’re looking to learn about different options for treating your MS relapses, you plus one caregiver or friend are invited to this FREE educational session where MS healthcare professionals will discuss:

• The difference between MS relapses and pseudo-relapses • The importance of treating your MS relapses • How to talk about your MS relapses with your healthcare provider • Available treatment options for MS relapses • Insights shared by others living with MS

Register by Monday, October 14, 2013. Call 1-877-219-0410 or visit www.msrelapseprogram.com Use Program ID # 9143. Complimentary meal and parking will be provided.

Location

Bandana's BBQ 309 East Main Street Carbondale, IL 62901

Date

Tuesday, October 15, 2013

Check-in

5:30 PM

Time

6:00 PM

Presented by Lori M Guyton, MD, MHS

Neurology of Southern Illinois, Ltd. Herrin, IL

PA I D A D V E R T I S E M E N T

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

LIVING WITH MS

FUN OF ZUMBA KEEPS PEOPLE MOVING Getting and staying motivated to exercise can be challenging for anyone, even more so for someone living with MS when things like fatigue, spasticity and numbness come into play. A fairly new and fresh approach to exercise is Zumba. Nora Yang is a NASM Personal Trainer and Zumba, Zumba Gold and Zumbatomic Certified Instructor. “Zumba is a Latindance inspired fitness workout, it’s fun and easy to learn,” Nora said. “In the Zumba class, you move with the music, your workout is done while you are having fun, so every class feels like a celebration.”

SEE PAGES 31-33 FOR A LIST OF THERAPEUTIC RECREATION LOCATIONS

Zumba is a cardiovascular workout that elevates the heart rate and strengthens the cardiorespiratory system. Other benefits include: increasing coordination, range of motion, flexibility and balance. It also can help release stress. “The best benefit of Zumba is it motivates people to stay active while having a good time,” Nora said. Zumba classes can also be modified for people

living with MS.

“In my Zumba class for people living with MS, we always warm up with easy movements,” she said. “I watch for signs of fatigue and we take breaks. Everyone is on their own pace. As our students are progressing well, we are able to add in more advanced movements and move a lot faster than before. Their balance and coordination has improved, and this helps with daily living and quality of life.” Debbie Bruce, who lives with MS, has personally felt the benefits of Zumba. “Until I started taking Zumba, I was having difficulty getting the aerobic exercise that I need,” Debbie said. “Now that problem is solved! My balance, coordination and flexibility have also improved because I move and stretch in ways I normally don’t. Did I mention that it’s also great for burning calories?” Brenda Berra, who also lives with MS, says Zumba is a great exercise for people with MS. “The main benefit I get out of Zumba is that it raises my heart rate,” Brenda said. “Individuals with MS can have difficulty figuring out a way to get this accomplished, because of mobility, balance and other things.” n

PA I D A D V E R T I S E M E N T

Featured Specialist:

Myles Goble, MD 11/15/13 at 6:00 p.m. 44 Stone Public House 3910 Peachtree Drive Columbia, MO 65203

Florian Thomas, MD 11/12/13 at 6:00 p.m. Lotawata Southern Grill 311 Salem Place Fairview Heights, IL 62220

Featured Specialist:

Barry Singer, MD 11/13/13 at 6:00 p.m. Maggiano’s Little Italy #2 The Boulevard - Saint Louis Richmond Heights, MO 63117

Barbara Green, MD 12/4/13 at 6:30 p.m. Sunset 44 118 West Adams Avenue Saint Louis, MO 63122

1/13

T-XMG-1234311

T-XMG-1187200

PA I D A D V E R T I S E M E N T

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

LIVING WITH MS

EVERYBODY ‘GETS IT’ AT CAMP HOPE

Madeline Oxendine attended Camp Hope to learn about MS and have fun. Madeline’s mother lives with MS and is currently losing her eyesight. “Sometimes, you can’t really tell that she has MS, but it’s big enough to have to go to the hospital to get treatments for it,” Madeline said.

Camp Hope provides kids with the opportunity to participate in typical summer camp activities such as horseback riding, canoeing, fishing, and making s’mores. However, one of the best parts about Camp Hope is that everyone has a connection to MS. While the campers spend a lot of time enjoying the outdoors, there is time built in throughout the week for kids to participate in sharing groups, music therapy sessions, and organized team building. “I was really impressed with the sharing groups,” said counselor Caitlyn Lenze. “Right away, kids were willing to talk about how they were feeling about things. I thought kids might be a bit more reserved and take a while to start talking, but they really just jumped right into it and they were willing to share.” Madeline learned that she isn’t alone. “It helps to know what other kids are going through and think that you’re going through the same situation,” Madeline said. The children shared about how they have to

CAMPER MADELINE OXENDINE (LEFT) AND COUNSELOR CAITLYN LENZE (RIGHT) BOTH ENJOYED THEIR CAMP HOPE EXPERIENCES. grow up too fast sometimes. “A lot of kids talk about how when their mom or dad isn’t feeling well, they have to take on more responsibility,” Caitlyn said. “This gives kids an opportunity to talk about life and have a week to be a normal kid – play, have fun, and talk to other kids who are going through the same thing and bond with them.” Even though Caitlyn didn’t have any personal connections to MS before her involvement with the National MS Society, she certainly understands how important this experience can be for a child. “I think it would just be so relieving to say, ‘Oh, finally someone who understands what I’m going through,’” Caitlyn said. “Some kids say they don’t really mention MS to their friends back home because they don’t know what it is. They don’t really get it. At Camp Hope, it’s kind of like everybody gets it.” n

PA I D A D V E R T I S E M E N T

You’re

invited!

Know Your Options: Exploring an FDA-approved treatment for MS relapses

Ý The difference between MS relapses and pseudo-relapses Ý The importance of treating your MS relapses Ý How to talk about your MS relapses with your healthcare provider Ý Available treatment options for MS relapses Ý Insights shared by others living with MS

Register by Mon., September 30, 2013. Call 1-877-219-0410 or visit www.msrelapseprogram.com Use Program ID # 1375. Complimentary meal and parking will be provided.

Location

The Pasta House 8213 Delmar Boulevard University City, MO 63124

Date

Tuesday, October 1, 2013

Check-in

11:30 AM

Time

12:00 PM

Presented by Lori Guyton, MD, MHS Neurology of Southern Illinois, Ltd. Herrin, IL

Remember: You and a guest are welcome at this FREE educational session. All MS relapse therapy decisions should be made under the guidance of your healthcare professional. ©2012 ©20 12 Que Questc Questcor stcor or Pha Pharma Pharmaceuticals, rmaceu ceutic ticals als, Inc IInc. nc. PM PM-54 PM-542-03 542-0 2 033 11/1 111/12 1/122

PA I D A D V E R T I S E M E N T

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

TALK MS

GETTING CREATIVE IN YOUR THERAPY BY SHARON GREENE CO -FACILITATOR CREATIVE ART THERAPY GROUP

Have you been looking for a way to meet others with MS, who have similar physical, mental, and emotional challenges that you experience on a daily basis? Do you need a boost in your self-confidence, a way to reduce depression, to increase your hope on moving forward, and do you want to create a one-of-a-kind piece of art, while having fun? If so, then take part in our free Creative Art Experience classes on the 3rd Saturday of each month at the Gateway Area Chapter office from 10 a.m. to noon. No artistic talent is needed, as we find new, creative ways each month to express ourselves, encourage each other, and learn more about handling the many changes of MS.

FIND A TALK MS GROUP NEAR YOU PAGES 25-26.

With funding from EMD Serono, the Chapter conducted a small research study to see the effects that creativity has on MS. The transition from “what was” to “what is” can be overwhelming, but creating art can be a potent weapon in dealing with the changes brought on by MS. The purpose of the study was to determine if there was a difference in self-esteem, hope, perceived

social support, and self-efficacy in individuals with MS following a four-week creative art program. Participants partook in watercolor painting, collage making, beading, and knitting of scarves. The results of this study will be published this fall in the Journal of Neuroscience Nursing. The immediate bonding that took place amongst the individuals with MS allowed the group to continue every month for the last two years. During that time, many creative projects have been explored including: Photography 101, felt beaded necklaces, wine-glass painting, greeting card making, more watercolor paintings, ruffled knitted scarves, photo montages, Ikebana paintings, basket weaving, pixel paintings, decoupaging, and bringing projects from home to finish. Future projects will include music therapy, the Art of Zentangles, colored pencil shading, and healing through harp music, So, come join the fun, make a new friend, experience the support from others, and create something that comes from within. If you have any questions or would like to join the Creative Art Experience classes, please contact Sharon Greene at 314-623-8528 – 4skgreene@gmail.com or Michelle Keating – michellekeating@juno.com. n

MS CONNECTION: FALL 2013

TALK MS GROUPS

Talk MS Groups bring together people who share a common life experience for support, education, and mutual aid. They are led by trained volunteers.

MISSOURI Camdenton

9/18, 11/20 6-7 p.m.

Camden County Library 99 Rodeo Road, Camdenton, MO 65020

Cape Girardeau

3rd Saturday 10 a.m.

St. Francis Health & Wellness Center, Rm. 1 Sharon 150 S. Auburn, Cape Girardeau, MO 63703 (573) 332-8148

Columbia

Rusk Rehabilitation Center 3rd Wednesday 315 Business Loop 70 West 6-8 p.m. Columbia, MO 65203

Disability Resource Association 420B S. Truman Bl. Crystal City, MO 63019 1st Monday Coca-Cola Bottling, Meeting Room Jefferson City 6 p.m. 605 Washington, Jefferson City, MO 65109 3rd Thursday Timberlake Christian Church Moberly 6:30-7:30 p.m. 1624 Gratz Brown, Moberly, MO 65270 Ralls County Health Department Building 2nd Tuesday New London 405 W. 1st Street 7 p.m. New London, MO 63459 Crystal City/ Festus

2nd Tuesday 1 p.m.

Christy Bays, cell (573) 480-7932 cm2owl@hotmail.com

Suzanne (573) 817-4673 or sdechazal@yahoo.com Kim Williams, kimik1ster@gmail.com Marlene (636) 464-2533 Sharon webradleys@yahoo.com Rebekah Walters (573) 808-4066 JCtalkMS@gmail.com

Lynelle (660) 833-3175 or lynelle1963@gmail.com Debby (573) 267-3365 mlrdsr@att.net

Rolla

Last Thursday 6:30 p.m.

Rolla Presbyterian Manor 1200 Homelife Plaza Rolla, MO 65401

Donna at (573) 263-4896 or dkreisler@centurylink.net Michelle at (573) 465-0453 or mkrrdr@gmail.com

Washington

3rd Monday 6 p.m.

St. Peter’s United Church of Christ, 20 East 5th St., Washington, MO 63090

Anne (636) 359-6037

West Plains

Sally (417) 469-4842 3rd Wednesday Ozark Medical Ctr. Shaw Medical Bldg. 2nd Dianna dianna.sigert@ 4:30 p.m. Fl. 909 Kentucky St., West Plains, MO 65775

ozarksmedicalcenter.com

ST. LOUIS METRO Affton

3rd Wednesday Weber Road Library 7 p.m. 4444 Weber Rd, St. Louis, MO 63123

Generation OptiMiStic for 1st Saturday people in their 10 a.m. 20s, 30s & 40s Oct. 13, Jan. 12, St. Peter’s March 9, 2-3 p.m. Informally St. Charles 3rd Sunday 3 p.m. West County 4th Wednesday Prayer & Health 6:30-8 p.m.

Linda (314) 544-5623

NMSS Office Gateway Area Chapter Michelle (636) 447-5407 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Conference Room A/B Barnes-Jewish Hospital, St. Peters, MO 63376 Hardee’s Restaurant, 501 Mid Rivers Mall Dr., St. Peters, MO 63376 Sachs Library 16400 Burkhardt Place Chesterfield, MO 63017

Debbie at debtalkms@yahoo.com Jim (314) 602-4578 Call to make sure group is meeting. Rose Marie sqsace@sbcglobal.net

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

TALK MS GROUPS ILLINOIS Alton/River Bend Belleville/ O’Fallon Central Illinois

3rd Tuesday 7-9 p.m. 2nd Sunday 2:30 p.m. 4th Monday 7 p.m. 1st & 3rd Highland Wednesday 10:30 a.m. S’myelin Gang 4th Tuesday of Litchfield 6:30 p.m. June 26, 7 p.m. Metro East Aug. 28, 7 p.m. Oct 23. 7 p.m.

The United Presbyterian Church, 2550 Rock Hill Rd., Wood River, IL 62095 First United Methodist Church 504 East Highway 50, O’Fallon, IL 62269 Richland Memorial Hospital 800 East Locust St., Olney IL 62450 Weinheimer Community Center 1100 Main Street Highland, IL 62249 Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056 LINC, Inc. #1 Emerald Terrace, Swansea, IL 62226

Lisa (618) 258-0615 Amy (618) 235-4226 Tony (618) 302-1333 tmadmz@frontier.com Karen at 618-830-5681 momferguson5@gmail.com Ruth (217) 999-8924 tuba66@frontiernet.net Diane (618) 235-8823 Earhart500@aol.com

SPECIALIZED GROUPS Couples Group

Varies, contact Varies, contact for information for information NMSS Office Creative Art 3rd Saturday 1867 Lackland Hill Parkway Experience 10 a.m. St. Louis, MO 63146 1st Tuesday in David C. Pratt Cancer Center MS Fun, Feb., May, Aug. Mercy Hospital Friends & & Nov. 607 S. New Ballas Rd. Food 6 p.m. St. Louis, MO 63147 Veterans Admin. Medical Center Veterans with 2nd Wednesday 1 Jefferson Barracks Dr. MS 10 a.m. St. Louis, MO 63125 1st Tuesday in CarePartner David C. Pratt Cancer Center Mercy Hospital Feb., May, Aug. and Family 607 S. New Ballas Rd. & Nov. Group St. Louis, MO 63147 6 p.m.

jsalacki2@gmail.com Sharon at 314-623-8528 or 4skgreene@gmail.com or Michelle at michellekeating@juno.com Michelle (314) 251-6400 Debbie (636) 579-0264 debra.morrissey2012@yahoo.com Penny (314) 652-4100 ext. 63274 Stacey (800) 344-4867 stacey.sickler@nmss.org

PA I D A D V E R T I S E M E N T

You’re

invited!

Know Your Options: Exploring an FDA-approved treatment for MS relapses

Register by Mon., September 30, 2013. Call 1-877-219-0410 or visit www.msrelapseprogram.com Use Program ID # 1376. Complimentary meal and parking will be provided.

Location

The Old Vine Riverfront Bistro* 430 West Front Street Washington, MO 63090

Date

Tuesday, October 1, 2013

Check-in

5:30 PM

Time

6:00 PM

Presented by Lori M Guyton, MD, MHS Neurology of Southern Illinois, Ltd. Herrin, IL *Formerly known as American Bounty

Remember: You and a guest are welcome at this FREE educational session. All MS relapse therapy decisions should be made under the guidance of your healthcare professional. ©2012 ©20 12 Que Questc Questcor stcor or Pharmaceuticals, Pharma Pha rmaceu ceutic ticals als, Inc IInc. nc. PM PM-54 PM-542-03 542-0 2 033 11/1 111/12 1/122

PA I D A D V E R T I S E M E N T

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

STAY HEALTHY WITH MS

Studies show exercise not only improves your overall health and well-being, but also helps manage many MS symptoms. Move forward through exercise and find a program in your community or become an expert in using a healthy lifestyle to help manage MS.

Financial assistance is available to help you pay for therapeutic recreation classes and memberships. In some cases, assistance with transportation may also be available. To apply, a completed financial assistance application and confirmation of MS diagnosis from your doctor is required. Amount of financial assistance is derived from a sliding scale based on the information from the financial assistance application. Please contact the facility of choice and determine if the facility will meet your desired needs to ensure a rewarding experience. Please note the Gateway Area Chapter makes every effort to ensure all facilities are accessible to meet the needs of people living with MS. If you think the facility would like education on MS, please contact the Chapter office at 1-800-344-4867 option 1. Applications are accepted year-round, however completed applications will only be approved during January, April, July and October. For more information go to www.gatewaymssociety.org g Stay Healthy with MS.

AQUATICS PILATES

TAI CHI

YOGA

ZUMBA

THERAPEUTIC RECREATION SITES ST. LOUIS Bridgeton Community Center Carondelet Park Rec Plex

ADDRESS 4201 Fee Fee Road Bridgeton, MO 63044 930 Holly Hills Ave St. Louis MO 63111 50 Gay Avenue Center of Clayton Clayton , MO 63105 1528 Locust Street Downtown YMCA St. Louis, MO 63103 Edward Jones Family 12521 Marine Avenue YMCA St. Louis, MO 63146 Pershall Road Emerson Family YMCA 3390 St. Louis, MO 63135 JCC - Marilyn Fox 16801 Baxter Road Building Chesterfield, MO, 63005 JCC - Staenberg Family 2 Millstone Campus Drive Complex St. Louis, MO 63146 Kirkwood Family 325 N. Taylor YMCA St. Louis, MO 63122 Maryland Heights 2344 McKelvey Road Centre Maryland Heights, MO 63043

CONTACT 314-739-5599 314-768-9622 314-290-8511 314-436-4100 314-439-9622 314-521-1822 314-442-3428 314-432-5700 314-965-9622 314-738-2599

ACTIVITIES OFFERED

MS CONNECTION: FALL 2013

THERAPEUTIC RECREATION SITES ST. LOUIS CONT.

ADDRESS 1900 Urban Drive Mid-County YMCA St. Louis, MO 63144 Olivette Community 9723 Grandview Drive Center St. Louis, MO 63132 Old Tesson, Suite 220 Mercy Medical Building 12348 St. Louis, MO, 63128 2085 Bluestone Drive Show Me Aquatics St. Charles, MO 63303 South City Family 3150 Sublette Avenue YMCA St. Louis, MO 63139 South County Family 12736 Southfork Road YMCA St. Louis, MO 63128 St. Charles County 3900 Shady Springs Lane YMCA St. Peters, MO 63376 The Cancer Support 1058 Old Des Peres Rd Community St. Louis, MO 63131 Des Peres Road The Lodge in Des Peres 1050 St. Louis, MO 63131 The Pointe at Ballwin 1 Ballwin Commons Circle Commons Ballwin, MO 63021 990 Horan Dr Riverchase Fenton, MO 63026 Washington Four 400 Grand Avenue Rivers Family YMCA Washington, MO 63090 Webster Groves Family 226 East Lockwood Avenue YMCA Webster Groves, MO 63119 Wellbridge Athletic 7620 Forsyth Boulevard Club Clayton , MO 63105 Wellbridge Athletic 998 Woods Mill Road Club Town & Country, MO 63131 West County Family 16464 Burkhardt Pl YMCA Chesterfield, MO 63017 3305 Jamieson Ave. Yoga Saint Louis St. Louis, MO 63139 233 Lamp & Lantern Village Z Power Fitness Town & Country, MO 63017

AQUATICS PILATES

TAI CHI

CONTACT

ACTIVITIES OFFERED

314-962-9450 314-781-9020 800-344-4867 314-729-0181 636-896-0999 314-644-3100 314-849-4668 636-928-1928 314-238-2000 314-835-6150 636-227-8950 618-343-0067 636-239-5704 314-962-9622 314-746-1500 636-207-3000 636-532-3100 314-645-9785 314-378-8639

YOGA

ZUMBA

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

THERAPEUTIC RECREATION SITES MID-MISSOURI Columbia Activity and Rec. Center

ADDRESS 1701 W. Ash Street Columbia, MO 65203 904 Elm St. Suite 210. Elm Street Yoga Columbia, MO 65201 424 Stadium Boulevard Jefferson City YMCA Jefferson City, MO 65101 1127 Adams Street Mexico Family YMCA Mexico, MO 65265 4818 Santana Circle Pilates for Everybody Columbia, MO 65203 Pilates & Yoga at Chapel 2010 Chapel Plaza Ct. Suite A Hill Columbia, MO 65203 ILLINOIS ADDRESS 1200 Esic Drive Edwardsville YMCA Edwardsville, IL 62025 Logan College Road John A. Logan College 700 Carterville, IL 62918 Collinsville Maryville 1 Town Center Drive Troy YMCA Maryville, IL 62062 Columbia-Monroe 880 Columbia Centre Physical & Sports Columbia, IL 62236 Medicne

CONTACT 573-874-7700 573-441-8566 573-761-9021 573-581-1540 573-228-6389 573-446-0224 CONTACT

618-985-3741 618-346-5600 618-281-9699

227 N. Market Mascoutah, IL 62258

618-566-8758

O’Fallon Community YMCA

284 North 7 Hills Road O’Fallon, IL 62269

618-628-7701

One-O-One Yoga

618-457-8186

Sukha Yoga Center

101 S Graham Ave # 1 Carbondale, IL 62901 18 South High Street Belleville, IL 62220

SOUTHEAST MISSOURI

ADDRESS

CONTACT

Black River Coliseum

301 South 5th Street Poplar Bluff, MO 63901 1920 Whitener Street Cape Girardeau, MO 63701 2620 N. Westwood Blvd. Poplar Bluff, MO 63901 1504 Preacher Roe #2 West Plains, MO 65775 422 West Pine Street Poplar Bluff, MO 63901

573-686-8001

PARC Fitness Center Simply Yoga Xtreme Gymnastics Cheer and Dance

ACTIVITIES OFFERED

618-656-0436

Mascoutah Senior Center

Cape Girardeau Municipal Pool

ACTIVITIES OFFERED

618-236-9642

573-335-4040 573-686-5985 417-293-1184 573-785-3780

ACTIVITIES OFFERED

MS CONNECTION: FALL 2013

JOIN THE MOVEMENT

LIVING WITH MS

Below are upcoming events for the Young Professionals Group.

The Wellness Network connects people who have an interest in or who are actively participating in exercise programs through a quarterly teleconference. These quarterly calls are an opportunity to share ideas and encouragement about exercise and include special guest speakers.

YOUNG PROFESSIONALS BOARD NETWORKING EVENT

Are you an aspiring Board Member? Join the Gateway MS Society Young Professionals, and other St. Louis area Young Professional Groups, for a Board Member Panel to learn more about what it takes. October 9, 6 p.m. Llywelyn’s Pub 17 West Moody Ave. Webster Groves, MO 63119

HOLIDAY AT THE HEIGHTS

The National MS Society works in conjunction with NHC to provide all residents living with MS with complete, holistic care, as well as providing additional programs and services. The Young Professionals will be assisting residents in wrapping holiday gifts, writing cards, decorating and just having a jolly good time. December 1, 2-4 p.m. NHC Healthcare 13995 Clayton Road Town & Country, MO

RSVP:

To RSVP or for more information on this group or the events, contact Amanda at Amanda.henderson@nmss.org.

WELLNESS NETWORK

OCT 24, 7-8 P.M. MUSIC THERAPY AND MS

• What is involved in music therapy? • How can music therapy help someone cope with MS and its various symptoms? • How can a person with MS incorporate music therapy into their everyday lives?

JANUARY 23, 7-8 P.M. ACT: ACCEPTANCE AND COMMITMENT THERAPY

• What is Acceptance and Commitment Therapy? • How does this type of therapy help someone with MS manage their daily challenges? • Can the strategies involved in ACT be easily incorporated into my everyday life? The Wellness Network is free and provides resources to a wide variety of people with MS of all abilities. If you are interested in becoming a member of the Wellness Network, please call 1-800-344-4867 or visit our website to register for the quarterly calls.

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

P Program located

CHAPTER CALENDAR

in this area.

DATE

PROGRAM/ EVENT

PG. #

Sept. 21

Research MS

Sept. 24

Research MS

Oct. 5

Can Do MS Program

Oct. 8

Connections

Oct. 14

Teleconference

Oct. 15

Connections

Oct. 24

Wellness Network

Nov. 11

Teleconference

' '

Nov. 16

John L. Trotter Program

Dec. 9

Teleconference

Jan. 13

Teleconference

Jan. 23

Wellness Network

' ' '

Available via

' telephone

;

Available via live-stream

ST. LOUIS ILLINOIS SOUTHERN MIDSEMETRO ILLINOIS MISSOURI MISSOURI

P P

' '

' ' '

PROGRAM REGISTRATION Name____________________________________________ Address___________________________________________ City/State/Zip_____________________________________ Home phone______________________________________ Work phone_______________________________________ E-mail___________________________________________ Date of Diagnosis___________________________________ Payment Information ( ) Fee waiver requested ( ) Check enclosed payable to NMSS ( ) Visa ( ) MC ( ) Disc ( ) Am. Ex Card # ________________________________________ Expiration Date:_________________________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440. Register online go to www.gatewaymssociety.org, g “Chapter Calendar.”

[ [ [ [ [ [ [ [ [ [ [

] Research MS, Cape Girardeau, MO September 21 COST: FREE PROGRAM ] Research MS, Maryville, IL September 24 COST: FREE PROGRAM ] Connections, St. Louis, MO October 8 COST: FREE PROGRAM ] Teleconference October 14 COST: FREE PROGRAM ] Connections, Marion, IL October 15 COST: FREE PROGRAM ] Wellness Network October 24 COST: FREE PROGRAM ] Teleconference November 11 COST: FREE PROGRAM ] John L. Trotter Research Program November 16 COST: $12 ] Teleconference December 9 COST: FREE PROGRAM ] Wellness Network January 23 COST: FREE PROGRAM ] Teleconference January 13 COST: FREE PROGRAM

NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Permit No. 3914 St. Louis, MO

Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146

LIVING WITH MS

MIDWEST TELECONFERENCE SERIES DIAL. LISTEN. LEARN.

IMPACTS OF THE AFFORDABLE CARE ACT October 14, 7-8 p.m. • Learn the scope of the ACA and who is affected • Understand what components are managed at the state and federal levels; • Explore the timeline and enrollment deadlines for the ACA RECOGNIZING RELAPSES November 11, 7-8 p.m. • Learn how to recognize a relapse • Gain tools to manage the onset of new symptoms • Explore what health professionals to involve at what point

MANAGING STRESS WITH MS December 9, 7-8 p.m. • Understand how stress can impact MS • Learn how to respond to stress in your life • Get tips for balancing emotional and physical health at busy times of the year MS AND MEN’S SEXUAL HEALTH JANUARY 13, 7-8 p.m. • Understand possible intimacy issues with MS • Learn when and how to talk to your health professional and loved one about these challenges • Explore treatments and therapy options