MS Connection - Fall Edition 2013

FALL 2013 GATEWAY AREA CHAPTER

MS CONNECTION MAGAZINE

INSIDE THIS ISSUE

2A WORD FROM THE NEW CHAPTER PRESIDENT

4-5ANALYZING THE PROS AND CONS OF VITAMIN D

10-11TRIO OF FRIENDS HAVE UNIQUE FUNDRAISER

23STAYING MOTIVATED AND MOVING WITH ZUMBA

AND MS

2 MS CONNECTION: FALL 2013

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.

I hope you don’t mind that I refer to you as my family already, for there are so many of you I haven’t had the pleasure to meet, but 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

LETTER FROM THE PRESIDENTConnections ................................................ 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

INSIDE THIS ISSUE

Publication of the National Multiple Sclerosis Society

Contact Us at: National MS Society, Gateway Area Chapter | 1867 Lackland Hill Parkway, St. Louis, MO 63146 | 314-781-9020 | 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.

REBECCA FEHLIG NEW CHAPTER PRESIDENT

3GATEWAYMSSOCIETY.ORG | 1-800-344-4867

OCTOBER 8, ST. LOUIS, MO, 5:30 P.M.Hilton Garden Inn, St. Louis Airport4450 Evans PlaceSt. Louis, MO 63134

SPEAKER: Daniel Wynn, MD, FACN, FAASMDirector of Clinical ResearchConsultants in Neurology, LtdDirector, Consultants in Neurology Multiple Sclerosis Society, Northbrook, IL

OCTOBER 15, MARION, IL, 5:30 P.M.Mackie’s Pizza2704 Walton Way Marion, IL 62959

SPEAKER: Florian Thomas, MD, PhD Director, St. Louis VA Regional MS Center of ExcellenceDirector, National MS Society Multiple Sclerosis CenterProfessor of NeurologySaint Louis University

LIVING WITH MS

CONNECTIONS LEARN. NETWORK. GROW.

SAVE THE DATE FOR CONNECTIONS PROGRAMS COMING TO YOUR AREA January 16, St. Charles County, MOJanuary 30, North St. Louis County, MOApril 1, Hannibal/New London, MOApril 8, Highland, IL

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.

REGISTRATION REQUIRED:These programs are free but call 800-344-4867 or go to gatewaymssociety.org g Chapter Calendar to register.

Imani, diagnosed in 2006


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

levels of vitamin D are linked with a higher risk 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 DVitamin 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.

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 see-saw, 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.

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

STOPPING MS


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 long-term disability (and is not something that gets routinely measured).

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

SATURDAY, NOVEMBER 16, 10 A.M.SPEAKER: Dr. Ellen Mowry Assistant Professor, Neuroimmunology Johns Hopkins University

St. Charles Convention Center1 Convention Center PlazaSt. Charles, MO 63303Cost: $12/personREGISTER BY NOVEMBER 11:Call 800-344-4867 or go to gatewaymssociety.org g Chapter Calendar to register.

JOHN L. TROTTER RESEARCH PROGRAM

THE ABC’S OF VITAMIN D AND MS


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.

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,”

RESEARCH

COORDINATORS, PATIENTS PLAY VITAL ROLE IN PROGRESS

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.


Susan said. “In most 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 negative affect on your insurance.”

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.

“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

GO TO NATIONALMSSOCIETY.ORG g RESEARCH gCLINICAL TRIALS FOR MORE ON TRIALS INCLUDING A GUIDE FOR POTENTIAL PARTICIPANTS.

VITAMIN D TRIAL AT WASHINGTON UNIVERSITYThis 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, [email protected]

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

Participating in clinical Trials

A Guide for People with MS


PREFER MS STUDY: FTY720DUS09: A 12-month, prospective, randomized, active-controlled, 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, [email protected].

ASSESS MS Study: FTY720D2312: A 12-month, randomized, rater-and dose-blinded 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, [email protected].

DALFAMPRIDINE (AMPYRA ®) 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 ®) 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, [email protected]

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, [email protected]

RESEARCH

CLINICAL TRIALS ENROLLING PATIENTS

CLICK HERE FOR MORE CLINICAL TRIALS.

P A 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

Space is limited. To RSVP: By Phone: 1-866-703-6293 By Email: [email protected] Event Code: _OCT12STL_________ MS.US.PO1634.0413

Speaker

Date & Time

Location

A light meal will be served

• A national MS Expert • A Person with RRMS

October 12, 2013 09:00AM – 1:00PM

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

• BarrySinger,MD,Director,MSCenterforInnovationsinCare

• APersonwithRRMS


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.”

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

DO IT YOURSELF EVENTS

QUIT PLAYING GAMES (WITH MY FUNDRAISING)

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.


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.

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


RESEARCH

FOCUS ON MS RESEARCHA 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.

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.

Three separate studies reported results on issues with falling.

• Debra Frankel, Vice President, Programs, Services and Clinical Care at the Society, reported that participants in the Society’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.)

RESTORING FUNCTION

STOPPING MS


• At the University of Illinois at Urbana-Champaign, 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.

• 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.

• 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 non-Hispanic 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

ENDING THE DISEASE FOREVER

RESTORING FUNCTION


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.

Myelin is formed from cells called oligos (short 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 PDGF-AA, 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 trials. Other antibody therapies are being developed that stimulate remyelination in animal 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

ASK THE PROFESSIONAL

CAN DISABILITY FROM MS BE REVERSED?

BARRY SINGER, M.D. DIRECTOR THE MS CENTER FOR INNOVATIONS IN CARE

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

RESTORING FUNCTION



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.

FeaturedSpecialist: FeaturedSpecialist:

FeaturedSpecialist:FeaturedSpecialist:

Heather Popham, RN, NP-C9/12/13 at 6:00 p.m.

Sunset 44118 West Adams AvenueSaint Louis, MO 63122

Tell or bring a friend! Accessible to people with disabilities.

Light meal served. Parking will be validated.

Space is limited. PleaseRSVPby calling 1-866-682-7491.

Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080 ©2013 Novartis 1/13 T-XMG-1234311

Heather Popham, RN, NP-C10/17/13 at 6:30 p.m.Cowan’s Restaurant

114 Elm StreetWashington, MO 63090

Florian Thomas, MD 10/14/13 at 5:30 p.m.

The Pier401 Bonsaninga Drive

Quincy, IL 62301

Barbara Green, MD10/30/13 at 6:00 p.m.Old Spaghetti Factory

17384 Chesterfield Airport Road Chesterfield, MO 63005


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?”

ROADBLOCK #2 “They are only here because of the MS.” Everyone wants their loved one to be with them because they love and cherish them. MS brings fears. Carepartners may fear that their loved one 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.

TIPS FOR CAREPARTNERS

ROAD TO A BETTER RELATIONSHIP: TACKLING MS RELATED ROADBLOCKS

KAREN TRIPP, MS LMFT MARRIAGE AND FAMILY THERAPIST


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 counselor’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 [email protected] or 314-814-0044. Phone or Skype sessions available.

You can do this. You can have a better relationship. n

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 Center150 S. Auburn Rd.Cape Girardeau, MO

SEPT. 24, MARYVILLE, IL, 6 P.M.Anderson Hospital6800 State Route 162Maryville, IL

REGISTRATION REQUIRED:These programs are free. But call 800-344-4867 or go to gatewaymssociety.org g Chapter Calendar to register.

Guest Speaker:Florian Thomas, MD, PHDDirector, St. Louis VA Regional MS Center of ExcellenceDirector, National MS Society Multiple Sclerosis CenterProfessor of NeurologySaint Louis University

RESEARCH MS

ON THE ROAD

Guest Speaker:Gregory F. Wu, MD, PHDDivision of Multiple SclerosisDepartment of NeurologyWashington University School of Medicine


LIVING WITH MS

HEALTH INSURANCE MARKETPLACE FACTSAs 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 “metal level” 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

An Oral Treatment Option for Relapsing Forms of Multiple Sclerosis (MS)AninformativeeventforpeoplelivingwithMSandtheircaregivers.

Space is limited. A light meal will be served.

To RSVP, please call 1-866-703-6293 or e-mail [email protected].

Event code: TR221898 (1036297) MS.US.PO1497.0313

Barbara Green, MD Thursday, November 7, 2013 at 6:00 PM Central

Old Spaghetti Factory17384 Chesterfield Airport RoadChesterfield, MO, 63005




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 [email protected]. n

ADVOCACY

FAQ ABOUT MEDICAID AND EXPANSION

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 (1-800-633-4227).


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.

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

VOLUNTEER COLUMN

VOLUNTEERING CAN BE INSPIRING

JULIE BELZER MS AMBASSADOR DEAN TEAM AUTOMOTIVE CHALLENGE WALK MS PARTICIPANT

Can Do Multiple Sclerosis | ONE DAY

JUMPSTART® PROGRAMAn 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.

REGISTER ONLINE AT WWW.MSCANDO.ORGOR CALL CAN DO MS TODAY

800-367-3101 EXT. 1281

Presentations & WorkshopsOFFERED AT NO CHARGE

Register Toda y!PROGRAM FILLS QUICKLY

LUNCH PROVIDED

• Strength Training

• GPS for Your MS

• Managing Family Dynamics

• Support Partner Workshop

• Interactive Panel with MS Experts

Saturday, October 5, 2013 – St. Charles Convention CenterOne Convention Center Plaza – St Charles, MO 63303

Presented by: In collaboration with:

www.mscando.org | 800-367-3101

The Barbara Epstein FoundationEMD Serono/Pfizer

Genzyme CorporationMellam Family Foundation

Rolex Watch USARoy A. Hunt Foundation

Supported by:



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

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

©2012 Questcor Pharmaceuticals, Inc. PM-542-03 11/12

You’reinvited!

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.

Register byCall 1-877-219-0410 or visit www.msrelapseprogram.com Use Program ID #

Complimentary meal and parking will be provided.

Presented byTimeCheck-inDate

Location

Neurology of Southern Illinois, Ltd.

309 East Main Street

5:30 PM

Bandana's BBQ

9143.

Carbondale, IL 62901

Lori M Guyton, MD, MHS

Herrin, IL

Monday, October 14, 2013.

Tuesday, October 15, 2013

6:00 PM


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 Latin-dance 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.”

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

LIVING WITH MS

FUN OF ZUMBA KEEPS PEOPLE MOVING

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



T-XMG-1187200

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.

FeaturedSpecialist: FeaturedSpecialist:

FeaturedSpecialist:FeaturedSpecialist:

Myles Goble, MD 11/15/13 at 6:00 p.m.

44 Stone Public House3910 Peachtree DriveColumbia, MO 65203

Tell or bring a friend! Accessible to people with disabilities.

Light meal served. Parking will be validated.

Space is limited. PleaseRSVPby calling 1-866-682-7491.

Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080 ©2013 Novartis 1/13 T-XMG-1234311

Barry Singer, MD 11/13/13 at 6:00 p.m.Maggiano’s Little Italy

#2 The Boulevard - Saint LouisRichmond Heights, MO 63117

Florian Thomas, MD 11/12/13 at 6:00 p.m.

Lotawata Southern Grill311 Salem Place

Fairview Heights, IL 62220

Barbara Green, MD12/4/13 at 6:30 p.m.

Sunset 44118 West Adams Avenue Saint Louis, MO 63122


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

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

LIVING WITH MS

EVERYBODY ‘GETS IT’ AT CAMP HOPE

CAMPER MADELINE OXENDINE (LEFT) AND COUNSELOR CAITLYN LENZE (RIGHT) BOTH ENJOYED THEIR CAMP HOPE EXPERIENCES.




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


©2012 Questcor Pharmaceuticals, Inc. PM-542-03 11/12©20©201212 QueQuestcstcoror PhaPharmarmaceuceuticticalsals I, Incnc. PMPM-54542-02 03 13 11/11/122

You’reinvited!


Register byCall 1-877-219-0410 orvisit www.msrelapseprogram.comUse Program ID #



LocationMon., September 30, 2013. The Pasta House8213 Delmar BoulevardUniversity City, MO 63124

Tuesday, October 1, 20131375.

11:30 AM

12:00 PM

Lori Guyton, MD, MHSNeurology of Southern Illinois, Ltd.

Herrin, IL


TALK MS

GETTING CREATIVE IN YOUR THERAPYBY 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.

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 – [email protected] or Michelle Keating – [email protected]. n

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


MISSOURI

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

Camden County Library 99 Rodeo Road, Camdenton, MO 65020

Christy Bays, cell (573) 480-7932 [email protected]

Cape Girardeau

3rd Saturday 10 a.m.

St. Francis Health & Wellness Center, Rm. 1 150 S. Auburn, Cape Girardeau, MO 63703

Sharon (573) 332-8148

Columbia 3rd Wednesday 6-8 p.m.

Rusk Rehabilitation Center315 Business Loop 70 WestColumbia, MO 65203

Suzanne (573) 817-4673 or [email protected] Williams, [email protected]

Crystal City/Festus

2nd Tuesday 1 p.m.

Disability Resource Association 420B S. Truman Bl.Crystal City, MO 63019

Marlene (636) 464-2533 Sharon [email protected]

Jefferson City 1st Monday 6 p.m.

Coca-Cola Bottling, Meeting Room605 Washington, Jefferson City, MO 65109

Rebekah Walters (573) [email protected]

Moberly 3rd Thursday6:30-7:30 p.m.

Timberlake Christian Church1624 Gratz Brown, Moberly, MO 65270

Lynelle (660) 833-3175 or [email protected]

New London 2nd Tuesday 7 p.m.

Ralls County Health Department Building405 W. 1st StreetNew London, MO 63459

Debby (573) 267-3365 [email protected]

Rolla Last Thursday 6:30 p.m.

Rolla Presbyterian Manor1200 Homelife PlazaRolla, MO 65401

Donna at (573) 263-4896 or [email protected] Michelle at (573) 465-0453 or [email protected]

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 3rd Wednesday 4:30 p.m.

Ozark Medical Ctr. Shaw Medical Bldg. 2nd Fl. 909 Kentucky St., West Plains, MO 65775

Sally (417) 469-4842Dianna [email protected]

ST. LOUIS METRO

Affton 3rd Wednesday 7 p.m.

Weber Road Library 4444 Weber Rd, St. Louis, MO 63123 Linda (314) 544-5623

Generation OptiMiStic for people in their 20s, 30s & 40s

1st Saturday 10 a.m.

NMSS Office Gateway Area Chapter 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Michelle (636) 447-5407

St. Peter’s Oct. 13, Jan. 12, March 9, 2-3 p.m.

Conference Room A/B Barnes-Jewish Hospital, St. Peters, MO 63376 Debbie at [email protected]

St. CharlesInformally 3rd Sunday 3 p.m.

Hardee’s Restaurant, 501 Mid Rivers Mall Dr., St. Peters, MO 63376 Jim (314) 602-4578

Call to make sure group is meeting.

West County Prayer & Health

4th Wednesday 6:30-8 p.m.

Sachs Library 16400 Burkhardt Place Chesterfield, MO 63017

Rose [email protected]

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


ILLINOISAlton/River Bend

3rd Tuesday 7-9 p.m.

The United Presbyterian Church, 2550 Rock Hill Rd., Wood River, IL 62095 Lisa (618) 258-0615

Belleville/ O’Fallon

2nd Sunday 2:30 p.m.

First United Methodist Church 504 East Highway 50, O’Fallon, IL 62269 Amy (618) 235-4226

Central Illinois

4th Monday 7 p.m.

Richland Memorial Hospital 800 East Locust St., Olney IL 62450

Tony (618) [email protected]

Highland1st & 3rd Wednesday 10:30 a.m.

Weinheimer Community Center1100 Main StreetHighland, IL 62249

Karen [email protected]

S’myelin Gang of Litchfield

4th Tuesday 6:30 p.m.

Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056

Ruth (217) [email protected]

Metro EastJune 26, 7 p.m.Aug. 28, 7 p.m. Oct 23. 7 p.m.

LINC, Inc. #1 Emerald Terrace, Swansea, IL 62226

Diane (618) 235-8823 [email protected]

SPECIALIZED GROUPSCouples Group

Varies, contact for information Varies, contact for information [email protected]

Creative Art Experience

3rd Saturday10 a.m.

NMSS Office1867 Lackland Hill ParkwaySt. Louis, MO 63146

Sharon at 314-623-8528 or [email protected] or Michelle at [email protected]

MS Fun, Friends & Food

1st Tuesday in Feb., May, Aug. & Nov.6 p.m.

David C. Pratt Cancer Center Mercy Hospital 607 S. New Ballas Rd.St. Louis, MO 63147

Michelle (314) 251-6400Debbie (636) [email protected]

Veterans with MS

2nd Wednesday 10 a.m.

Veterans Admin. Medical Center 1 Jefferson Barracks Dr.St. Louis, MO 63125

Penny (314) 652-4100 ext. 63274

CarePartner and Family Group

1st Tuesday in Feb., May, Aug. & Nov.6 p.m.

David C. Pratt Cancer Center Mercy Hospital607 S. New Ballas Rd.St. Louis, MO 63147

Stacey (800) 344-4867 [email protected]

TALK MS GROUPS




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


©2012 Questcor Pharmaceuticals, Inc. PM-542-03 11/12©20©201212 QueQuestcstcoror PhaPharmarmaceuceuticticalsals I, Incnc. PMPM-54542-02 03 13 11/11/122

You’reinvited!


Register byCall 1-877-219-0410 orvisit www.msrelapseprogram.comUse Program ID #



LocationMon., September 30, 2013. The Old Vine Riverfront Bistro*430 West Front StreetWashington, MO 63090

Tuesday, October 1, 20131376.

5:30 PM

6:00 PM

Lori M Guyton, MD, MHSNeurology of Southern Illinois, Ltd.

Herrin, IL

*Formerly known as American Bounty


ST. LOUIS ADDRESS CONTACT ACTIVITIES OFFEREDBridgeton Community Center

4201 Fee Fee Road Bridgeton, MO 63044 314-739-5599

Carondelet Park Rec Plex

930 Holly Hills AveSt. Louis MO 63111 314-768-9622

Center of Clayton 50 Gay AvenueClayton , MO 63105 314-290-8511

Downtown YMCA 1528 Locust Street St. Louis, MO 63103

314-436-4100

Edward Jones Family YMCA

12521 Marine Avenue St. Louis, MO 63146 314-439-9622

Emerson Family YMCA 3390 Pershall RoadSt. Louis, MO 63135 314-521-1822

JCC - Marilyn Fox Building

16801 Baxter RoadChesterfield, MO, 63005 314-442-3428

JCC - Staenberg Family Complex

2 Millstone Campus Drive St. Louis, MO 63146 314-432-5700

Kirkwood Family YMCA

325 N. TaylorSt. Louis, MO 63122

314-965-9622

Maryland Heights Centre

2344 McKelvey Road Maryland Heights, MO 63043 314-738-2599

THERAPEUTIC RECREATION SITES

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.

STAY HEALTHY WITH MS

AQUATICS PILATES TAI CHI YOGA ZUMBA


THERAPEUTIC RECREATION SITESST. LOUIS CONT. ADDRESS CONTACT ACTIVITIES OFFERED

Mid-County YMCA 1900 Urban DriveSt. Louis, MO 63144 314-962-9450

Olivette Community Center

9723 Grandview Drive St. Louis, MO 63132

314-781-9020 800-344-4867

Mercy Medical Building 12348 Old Tesson, Suite 220St. Louis, MO, 63128 314-729-0181

Show Me Aquatics 2085 Bluestone Drive St. Charles, MO 63303 636-896-0999

South City Family YMCA

3150 Sublette AvenueSt. Louis, MO 63139 314-644-3100

South County Family YMCA

12736 Southfork RoadSt. Louis, MO 63128

314-849-4668

St. Charles County YMCA

3900 Shady Springs Lane St. Peters, MO 63376

636-928-1928

The Cancer Support Community

1058 Old Des Peres RdSt. Louis, MO 63131 314-238-2000

The Lodge in Des Peres 1050 Des Peres Road St. Louis, MO 63131 314-835-6150

The Pointe at Ballwin Commons

1 Ballwin Commons Circle Ballwin, MO 63021 636-227-8950

Riverchase 990 Horan Dr Fenton, MO 63026 618-343-0067

Washington Four Rivers Family YMCA

400 Grand AvenueWashington, MO 63090 636-239-5704

Webster Groves Family YMCA

226 East Lockwood Avenue Webster Groves, MO 63119 314-962-9622

Wellbridge Athletic Club

7620 Forsyth BoulevardClayton , MO 63105 314-746-1500

Wellbridge Athletic Club

998 Woods Mill RoadTown & Country, MO 63131 636-207-3000

West County Family YMCA

16464 Burkhardt Pl Chesterfield, MO 63017 636-532-3100

Yoga Saint Louis 3305 Jamieson Ave. St. Louis, MO 63139 314-645-9785

Z Power Fitness 233 Lamp & Lantern Village Town & Country, MO 63017 314-378-8639

AQUATICS PILATES TAI CHI YOGA ZUMBA


MID-MISSOURI ADDRESS CONTACT ACTIVITIES OFFEREDColumbia Activity and Rec. Center

1701 W. Ash StreetColumbia, MO 65203 573-874-7700

Elm Street Yoga 904 Elm St. Suite 210. Columbia, MO 65201 573-441-8566

Jefferson City YMCA 424 Stadium Boulevard Jefferson City, MO 65101 573-761-9021

Mexico Family YMCA 1127 Adams StreetMexico, MO 65265 573-581-1540

Pilates for Everybody 4818 Santana Circle Columbia, MO 65203 573-228-6389

Pilates & Yoga at Chapel Hill

2010 Chapel Plaza Ct. Suite AColumbia, MO 65203 573-446-0224

ILLINOIS ADDRESS CONTACT ACTIVITIES OFFERED

Edwardsville YMCA 1200 Esic DriveEdwardsville, IL 62025 618-656-0436

John A. Logan College 700 Logan College RoadCarterville, IL 62918 618-985-3741

Collinsville Maryville Troy YMCA

1 Town Center Drive Maryville, IL 62062 618-346-5600

Columbia-Monroe Physical & Sports Medicne

880 Columbia CentreColumbia, IL 62236 618-281-9699

Mascoutah Senior Center

227 N. Market Mascoutah, IL 62258 618-566-8758

O’Fallon Community YMCA

284 North 7 Hills RoadO’Fallon, IL 62269

618-628-7701

One-O-One Yoga 101 S Graham Ave # 1 Carbondale, IL 62901 618-457-8186

Sukha Yoga Center 18 South High Street Belleville, IL 62220 618-236-9642

SOUTHEAST MISSOURI ADDRESS CONTACT ACTIVITIES OFFERED

Black River Coliseum 301 South 5th Street Poplar Bluff, MO 63901 573-686-8001

Cape Girardeau Municipal Pool

1920 Whitener Street Cape Girardeau, MO 63701 573-335-4040

PARC Fitness Center 2620 N. Westwood Blvd.Poplar Bluff, MO 63901 573-686-5985

Simply Yoga 1504 Preacher Roe #2 West Plains, MO 65775 417-293-1184

Xtreme Gymnastics Cheer and Dance

422 West Pine Street Poplar Bluff, MO 63901 573-785-3780

THERAPEUTIC RECREATION SITES


Below are upcoming events for the Young Professionals Group.

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 Pub17 West Moody Ave.Webster Groves, MO 63119

HOLIDAY AT THE HEIGHTSThe 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 Healthcare13995 Clayton Road Town & Country, MO

RSVP:To RSVP or for more information on this group or the events, contact Amanda at [email protected].

JOIN THE MOVEMENT

YOUNG PROFESSIONALS

LIVING WITH MS

WELLNESS NETWORKThe 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.

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.

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?


DATE PROGRAM/EVENT

PG. #

ST. LOUIS METRO

ILLINOIS SOUTHERN ILLINOIS

MID- MISSOURI

SE- MISSOURI

Sept. 21 Research MS 17 P

Sept. 24 Research MS 17 P

Oct. 5 Can Do MS Program 21 P

Oct. 8 Connections 3 P

Oct. 14 Teleconference 36 ' ' ' ' 'Oct. 15 Connections 3 P

Oct. 24 Wellness Network 34 ' ' ' ' 'Nov. 11 Teleconference 36 ' ' ' ' 'Nov. 16 John L. Trotter Program 5 P

Dec. 9 Teleconference 36 ' ' ' ' 'Jan. 13 Teleconference 36 ' ' ' ' 'Jan. 23 Wellness Network 34 ' ' ' ' '

CHAPTER CALENDAR Available via telephone

Available via live-stream

Program located in this area. P ' ;

PROGRAM REGISTRATIONName ___________________________________________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. ExCard # _______________________________________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

IMPACTS OF THE AFFORDABLE CARE ACTOctober 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

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Permit No. 3914St. Louis, MO

Gateway Area Chapter1867 Lackland Hill ParkwaySt. Louis, MO 63146

LIVING WITH MS

MIDWEST TELECONFERENCE SERIES DIAL. LISTEN. LEARN.

Documents

MS Connection - Fall Edition 2013