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SPRING 2013 GATEWAY AREA CHAPTER

MS CONNECTION MAGAZINE CONNECT TO END MS

THERE’S A WALK NEAR YOU

TEAM MELODIE, WALKING SINCE 2008

INSIDE 4 THIS ISSUE

LEADER CONNECTS WITH TALK MS GROUP

5

8-9

10-11

OSMOND TO SPEAK AT ANNUAL LUNCHEON

CHAPTER HEADED TO BUSCH STADIUM

CAMPERS, COUNSELORS GROW AT CAMP HOPE


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MS CONNECTION: SPRING 2013

INSIDE THIS ISSUE

LETTER FROM THE PRESIDENT

Team Connects at Walk MS............ 3 Talk MS Group Grows.................... 4 Women On the Move Luncheon...... 5 Ask the Professional......................... 6 Cognitive Rehabilitation.................. 7 Challenge Walk MS......................... 8 MS Night at Busch Stadium............ 9 Camp Hope...............................10-11 CarePartner Column.......................12 Connections....................................13 Couples Retreat...............................13 Advocacy....................................14-15 Board of Trustees............................16 Research MS.................................. 20 Wellness......................................... 22 Sam’s Club Fundraiser................... 24 Talk MS Groups....................... 28-29

Lately we’ve been talking a lot about “connections” at the National MS Society. When multiple sclerosis destroys connections in the body, the symptoms can be devastating. But when we build connections in the community, the results can be incredibly powerful. We see those powerful results when a Walk MS team rallies around their friend to let her know she is not alone (see page 3); when a volunteer forms a support group and feels like her world has opened up (page 4); when a young woman who lost her father to complications of MS shares her experience with children at Camp Hope (page 10). As you read this issue of the MS Connection magazine, I hope that you will be as inspired by the stories as I am. Throughout the magazine, you will see many opportunities to connect with others – for support, for education, for your health, or just to have fun and be with others who understand what you are going through. If you want to share your story about how connecting with others changed your life, please visit MSconnection.org. Remember, MS destroys connection, and it is up to us to build the connections that will ultimately destroy MS.

Therapeutic Recreation.............. 30-32 Chapter Calendar........................... 34 Program Registration......................35 Midwest Teleconference Series....... 36

Phyllis Robsham Chapter President P.S. I hope to connect with you at Walk MS this spring (see pages 1819)! It is the rallying point of the MS Movement, and a great way to connect with others in your community who want to do something about MS now!


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WALK MS

TEAM MELODIE SINGS SWEET TUNE The diagnosis of MS can raise emotions of fear, uncertainty and even loneliness.

“When I was diagnosed with multiple sclerosis in 2007, I was devastated,” Melodie Klenke said. “All I could see was myself in a wheelchair. Those were dark days.” But Melodie’s friends, family and co-workers made sure Melodie knew she was not alone by forming Team Melodie in 2008. “We all became very aware of what MS was all about,” team captain Jane Wagganer said. “After reading about the diagnosis, the challenges, and the many people living with MS, it was a pull on our heartstrings. We had to get involved, we had to do something.” Team Melodie makes connections in a variety of ways by selling cookbooks and holding bake sales. Over the past five years Team Melodie’s connection has grown bigger and stronger. “It’s amazing how Team Melodie has grown over the years, and how being a team has pulled us all together to become a very close group,” Jane said. “Our group is family. Through the process, we have encountered a lot of people who have relatives and friends living with MS. We are not just walking for Melodie we are walking for everyone affected by MS.

TEAM MELODIE CONTINUES TO GROW EVERY YEAR AT WALK MS. Melodie is still surprised at the support she’s received and what her team has accomplished. “When Jane created Team Melodie in 2008, it humbled me to realize just how much family, friends and co-workers were willing to do for me,” Melodie said. “We have done Walk MS in sunshine, rain, sleet and snow – and that was all in the first year! Since then, we’ve had sunny days, windy days and cool days. But most of all, we have had days of fellowship and camaraderie.” While Team Melodie MS impacts its namesake, it has also made an impact on its captain. “It has brought me close to knowing the love and care people have,” Jane said. “The walk is not a lonely one for those with MS. There are many, many who care and support all our friends and loved ones. I feel truly blessed growing close to Team Melodie.” n


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MS CONNECTION: SPRING 2013

LIVING WITH MS

TALK MS GROUP FORMS STRONG CONNECTION Like many people living with MS, Karen Ferguson was in a bit of denial and dealt with depression. Although she was diagnosed with MS in 2007, she hadn’t really connected with the National MS Society. “I really didn’t have much to do with the MS Society because I was in denial for so long,” whe said. “I had received information but I didn’t really try to get to know how much the Society had to offer.” Last year, Karen decided to reach out and talk to someone else living with MS. That, combined with a conversation with her daughter, made Karen want to get more involved. “Even though we only spoke a few times that really opened the door for me to realize I was not alone,” Karen said. “One day my daughter mentioned I needed to talk to someone because my depression was getting so bad. Then it dawned on me, I was dealing with grief issues.” Karen had been a facilitator of a grief support group for the bereaved as a social worker. Since she could no longer work in her field, her depression grew. “That is what made me decide I needed to join a (Gateway Area Chapter) Talk MS group for support,” Karen said. “I needed to talk to people who really understood what I was going through. Even though my husband and family are very supportive – they just don’t ‘get it.’” The only problem was, there wasn’t a group

near Karen in Highland, IL. So she started one. The group has hit the ground running with solid attendance and terrific support. “After getting some ideas from the group, I’ll think of a subject and some questions and the group takes it from there,” Karen said. “Sometimes someone in the group will have a question and we are all there to try to help them find an answer. They are a great group of men and women and very open to talking about their experiences. We are very upbeat – none of us like to do the ‘pity party’ thing. Although we all have different symptoms, it’s easier to laugh with someone who understands your challenges.” Starting the group and attending meetings has helped Karen feel less isolated.

FIND A TALK MS GROUP

“I get so much out NEAR YOU. PAGES 28-29. of our meetings. We have only been meeting since November and I already feel so close to these people. We all share a common bond – we all ‘get it,’” Karen said. “I feel like I can talk to people about my disease. I am no longer alone – I feel like my world has opened up. It is such a blessing to be able to help others connect with each other. By helping others it takes the attention off of you and you are able to put your energy to better use. I would really like to expand our group and get more involved in MS awareness.” n


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WOMEN ON THE MOVE

OSMOND ROCKS IT TO END MS Since his MS diagnosis in 2006, David Osmond has been inspiring people by performing on American Idol, writing and recording songs that stir your soul and simply sharing his story.

“I thought music was done for me,” said David about when he was diagnosed with MS. Earlier in his MS journey, he couldn’t walk, his breathing was so labored he couldn’t sing, and playing guitar was impossible. Fortunately, he has regained much of his function, but it was terrifying it must have meant for an Osmond to ponder a life without music. David is the son of Alan Osmond, the founder of the famed troupe of singing brothers, who also lives with MS. David credits a favorite saying of his father’s — “I may have MS but MS does not have me” — with helping him get back on stage. David is an MS Ambassador and the special guest speaker at the Chapter’s Women on The Move Luncheon on May 1. David’s positive spirit in the face of MS makes him an

inspiration.

“Pain comes to all of us, suffering is optional,” David said. “I’ve been really blessed in so many ways. Music is my life, and I got the chance to share it once again with everyone DAVID OSMOND WILL BE THIS YEAR’S who FEATURED SPEAKER AT THE WOMEN ON THE watches MOVE LUNCHEON ON MAY 1. American Idol. Though my stay on that pressure cooker of a show was short-lived, it still was a great opportunity for me to let people know a little more about MS.” n

HEAR OSMOND SPEAK AT THE WOMEN ON THE MOVE LUNCHEON MAY 1. Join us for an inspirational afternoon and support amazing women who have been affected by MS by attending the Women on the Move Luncheon. The luncheon will be at the Ritz-Carlton in St. Louis. Tickets are $75 per person. To purchase tickets call 800344-4867 or go to www.mswomenonthemove.org.


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MS CONNECTION: SPRING 2013

ASK THE PROFESSIONAL

HOW CAN YOU ‘REHAB’ YOUR MIND? BY P. TYLER ROSKOS FOLTZ PHD, ABPP, SAINT LOUIS UNIVERSITY

Neurocognitive rehabilitation is generally used to address cognitive problems associated with a number of neurological illnesses, including MS. Effective methods involve development of compensatory strategies for areas of cognitive weakness (i.e. use of memory aids for people with memory problems), as well as use of treatment strategies to remediate deficits. Neurocognitive rehabilitation is thought to capitalize on “plasticity,” or the brain’s ability to adapt to changes in structure to maximize functioning. There are many factors, including age, genetics, illness-related factors, and a person’s characteristics and environment, that can affect how they may respond to cognitive rehabilitation techniques. One of the best ways to keep the mind active is to keep the body active. There is a clear connection between physical activity and brain functioning. We know that exercise can stimulate the brain to be more active and healthy. The cardiovascular benefits associated with exercise are also thought to be beneficial to the overall health of the brain. Exercise is also known to improve mood and help people cope with stress. If your MS prevents you from strenuous exercise, that’s okay. Rigorous physical activity is not required to be beneficial. The best

thing to do is to stay as active as one can. People with physical limitations may also engage in other activities, such as socializing or interacting with friends and family, as a form of mental exercise. Here are some simple things you can do to exercise your mind:

P. TYLER ROSKOS, PHD, ABPP AT SAINT LOUIS UNIVERSITY SCHOOL OF MEDICINE WILL BE THE FEATURED SPEAKER AT THE CHAPTER’S “KEEPING YOUR MIND AND BODY FIT” A PROGRAM ON APRIL 27. SEE NEXT PAGE FOR DETAILS.

1. Stay active in things that you enjoy. Reading, writing, playing cards, and playing games can all work to keep the mind busy. Cognitive exercise does not have to be hard and it does not have to be boring - it works best when you are having fun doing it. 2. Keep your mind and your body busy, but also allow yourself time to adequately rest. Good sleep is equally as important as staying active. 3. Stay involved in social interaction - this is good to keep your brain sharp, but also to cope with stress and stay connected to people in your support system. n


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LIVING WITH MS

KEEPING YOUR MIND AND BODY FIT A PROGRAM ON COGNITIVE REHABILITATION APRIL 27, ST. LOUIS, MO

The program will focus on neurocognitive rehabilitation with an emphasis on exercise and physiology, lifestyle and behavior management. Participants will also receive an update on Progressive MS research, as well as any new treatments, therapies, and studies in progress.

KEYNOTE SPEAKER:

P. Tyler Roskos, PhD, ABPP Board Certified in Clinical Neuropsychology Department of Neurological Surgery & Department of Psychology Saint Louis University School of Medicine

GUEST SPEAKER:

DETAILS:

Saturday, April 27 9:30 a.m. - 1 p.m. Marriott West 660 Maryville Centre Drive St. Louis, MO 63141 Live stream and teleconference options are available upon request.

COST:

$10 per person, includes brunch. Scholarships are available. Scholarship deadline is April 22.

REGISTRATION:

Call 1-800-344-4867 or at gatewaymssociety. org g Chapter Calendar. Registration deadline is noon on Wednesday, April 24.

Lauren Schwarz, PhD, ABPP-CN Assistant Professor Department of Neurological Surgery & Department of Psychiatry Saint Louis University School of Medicine

GUEST SPEAKER:

Robert Naismith, MD Assistant Professor of Neurology Washington University in St. Louis

Eric, diagnosed in 1951


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MS CONNECTION: SPRING 2013

CHALLENGE WALK MS

CHALLENGE WALKERS HEADED TO BUSCH Over the past 11 years, Dean Team Automotive Challenge Walkers have ventured past the Gateway Arch, through Jefferson Barracks Park, over the Clark Bridge, on trails of St. Charles County, down the Delmar Loop, through Forest Park and campuses of Washington University and Saint Louis University. But this year participants in the 3-day, 50mile Challenge Walk will truly have a unique experience as they will walk around the track at Busch Stadium before the St. Louis Cardinals play the San Francisco Giants on May 31.

“WE CANNOT WAIT TO WALK UNDER THE LIGHTS OF BUSCH STADIUM! WHAT A ONCE-IN-A-LIFETIME EXPERIENCE. THE CHALLENGE WALK JUST CONTINUES TO GET BETTER YEAR AFTER YEAR!” - PAT DEAN “We cannot wait to walk under the lights of Busch Stadium! What a once-in-a-lifetime experience,” said Pat Dean of the Dean Team. “The Challenge Walk just continues to get better year after year!” In addition, the walkers will have plenty of fans in the crowd as May 31 will be the Chapter’s Family Evening at the Ballpark. At least 1,000

THE DEAN TEAM AUTOMOTIVE CHALLENGE WALK MS PARTICIPANTS WILL GET THE OPPORTUNITY TO WALK AROUND THE TRACK AT BUSCH STADIUM BEFORE THE ST. LOUIS CARDINALS GAME AGAINST THE SAN FRANCISCO GIANTS ON FRIDAY, MAY 31. members of the Chapter “family” will attend the game and cheer on the walkers as they walk around the track in a pre-game ceremony. It certainly has veteran Challenge Walkers excited. “This is great news,” said Rick Evans of the E Team. “How awesome is this?” “I cannot wait,” said Kim Rucker of Sole Sisters and Misters. For more information about Challenge Walk MS visit gatewaymschallenge.org. n


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SOCIAL PROGRAMMING

MS NIGHT AT THE BALLPARK MAY 31, ST. LOUIS, MO

POWER CHAIRS Jazzy 614 heavy duty power chair. Includes charger. About 3 years old. Not that many hours. Asking $2,000. In good condition. Contact Vern Anderson at 636-3940199. Quantum 1113 power chair. Includes joystick. 5 years old. In good condition. Asking $500, but negotiable. Contact Linda Jenkins at 314-774-1894.

REGISTRATION:

Call 1-800-344-4867 or visit gatewaymssociety.org g Chapter Calendar. 24. 25. 26. 27.

Yourself Taxable income amount from Lines 23Y and 23S .................................................................. 24Y Tax (See tax table on page 25 of the instructions.)................................................................. 25Y Resident credit — Attach Form MO‑CR and other states’ income tax return(s). ......................... 26Y Missouri income percentage — Enter 100% unless you are completing Form MO‑NRI. Attach Form MO‑NRI and a copy of your federal return if less than 100%. ................................. 27Y Balance — Subtract Line 26 from Line 25; OR Multiply Line 25 by percentage on Line 27. ............................................................ 28Y Other taxes (Check box and attach federal form indicated.) Lump sum distribution (Form 4972) Recapture of low income housing credit (Form 8611) ................................................ 29Y Subtotal — Add Lines 28 and 29. ........................................................................................... 30Y Total Tax — Add Lines 30Y and 30S. ........................................................................................................................ 31

TAX

CHECK OFF FOR MS ON YOUR MISSOURI TAX FORM. 28. 29.

30. 31.

00 00 00

Spouse

24S 25S 26S

32. 33. 34. 35. 36. 37. 38. 39.

40. Amount paid on original return .................................................................................................................................... 40 41. Overpayment as shown (or adjusted) on original return ............................................................................................. 41 INDICATE REASON FOR AMENDING. M M D D Y Y A. Federal audit ...................................................................Enter date of IRS report. B. Net operating loss carryback .....................................................Enter year of loss. C. Investment tax credit carryback.............................................. Enter year of credit. D. Correction other than A, B, or C ..... Enter date of federal amended return, if filed.

2012 Missouri estimated tax payments (include overpayment from 2011 applied to 2012) ............................................... Missouri tax payments for nonresident partners or S corporation shareholders — Attach Forms MO‑2NR and MO‑NRP. ........ Missouri tax payments for nonresident entertainers — Attach Form MO‑2ENT. ........................................................ Amount paid with Missouri extension of time to file (Form MO‑60) ............................................................................. Miscellaneous tax credits (from Form MO‑TC, Line 13) — Attach Form MO‑TC........................................................ Property tax credit — Attach Form MO‑PTS. .............................................................................................................. Total payments and credits — Add Lines 32 through 38. ...........................................................................................

00 00 00

%

27S

%

00

28S

00

00 00

29S 30S

00 00 00 00 00 00 00 00 00

MISSOURI tax withheld — Attach Forms W‑2 and 1099................................................................................................ 32

PAYMENTS / CREDITS

MARKETPLACE ADS

$30 per person, includes ticket, a special MS Society/Cardinals t-shirt and a voucher for a soft drink and hot dog.

AMENDED RETURN

Friday, May 31, 7:15 p.m. St. Louis Cardinals vs. San Francisco Giants Busch Stadium St. Louis, MO Deadline to purchase tickets is May 10.

COST:

33 34 35 36 37 38 39

00 00

On line 45 of Missouri 1040 taxpayers can donate up to $200 of their refund by inserting the “Additional Fund Code” of 10 (on the far right 00 00 side of the line, where 10 is in orange below) with the donation amount inserted directly below the code. 00 Skip Lines 40–42 if you are not filing an amended return.

REFUND

DETAILS:

ENJOY A ST. LOUIS CARDINALS GAME AND HELP RAISE MS AWARENESS ON MAY 31.

AMOUNT DUE

Leave your Cardinal Red at home and wear your orange at MS Night at Busch Stadium when the St. Louis Cardinals will take on the World Champion San Franciso Giants. Arrive early to cheer on the Dean Team Automotive Challenge Walk MS participants who will walk around the track before the game. Stay late to enjoy the fireworks after the game!

42. Amended Return — total payments and credits. Add Line 40 to Line 39 or subtract Line 41 from Line 39. .............

42

43. If Line 39, or if amended return, Line 42, is larger than Line 31, enter difference (amount of OVERPAYMENT) here. ............................................................................................................................

43

44. Amount of Line 43 to be applied to your 2013 estimated tax ..................................................................................... 44 45. Enter the amount of your G LEAD Workers R donation in the trust fund Missouri Missouri Military Childhood Elderly Home National Guard General Veterans Children’s After School Workers’ boxes to the right. See Trust Fund Delivered Meals Trust Fund Trust Fund Lead Testing Family Relief Revenue Retreat Memorial Trust Fund Fund Fund Fund Fund Fund instructions for trust fund 00 00 00 00 00 00 00 00 00 codes.......................... 45. 46. REFUND - Subtract Lines 44 and 45 from Line 43 and enter here. Sign below and mail return to: Department of Revenue, PO Box 500, Jefferson City, MO 65106‑0500. Debit Card 46 Check the box if you want your refund issued on a debit card. See instructions for Line 46. ........... eneral

evenue

00 00 Additional Additional Fund Code Fund Code (See Instr.) (See Instr.) Organ Donor ______|______ ______|______ Program Fund

10

00

00

00

47. If Line 31 is larger than Line 39 or Line 42, enter the difference (amount of UNDERPAYMENT) here and go to instructions for Line 48. ..............................................................................................................................................

47

48. Underpayment of estimated tax penalty — Attach Form MO‑2210. Enter penalty amount here. .............................

48

00 00

49. AMOUNT DUE - Add Lines 47 and 48 and enter here. Sign below and mail return and payment to: Department of Revenue, PO Box 329, Jefferson City, MO 65107‑0329. See instructions for Line 49.. ....................

49

00

If you pay by check, you authorize the Department of Revenue to process the check electronically. Any returned check may be presented again electronically.

00


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MS CONNECTION: SPRING 2013

VOLUNTEER COLUMN

COUNSELOR EXCITED FOR CAMP BY JACLYN MUFF CAMP HOPE MS COUNSELOR

We’ve been lookin’ for a cure to find, To stop the sadness that is in our minds . . . And though our work’s not done, We know that we can overcome! Just thought I would start off by sharing part of “Overcome,” the song the campers at Camp Hope created last summer during a sharing session! This was only one of the MANY activities we enjoyed during the week-long camp, including horseback riding, swimming, karaoke, talent show, and canoeing to name a few more. Camp Hope is the perfect summer camp for a child affected by MS. Not only is there a schedule jam-packed with typical summer camp activities, but this camp also provides the opportunity for kids to share their feelings and experiences with MS. My experience as a Camp Hope counselor was extraordinary! I practiced sketching wolves, had my first experience with quesadilla s’mores, made a neon orange survival bracelet, learned the newest dance move called “The Bert,” shared my most favorite childhood camp songs, journeyed to a wooden castle (Castle Park), experienced my first water booth dunking, and had a fantastic time being the leader of “Team Awesomeness!”

JACLYN MUFF (SECOND FROM RIGHT) CERTAINLY ENJOYED HER EXPERIENCE WORKING WITH CHILDREN AFFECTED BY MS. My desire to become a Camp Hope counselor stemmed from my experiences as a child of a parent with MS. My dad passed away from complications due to primary progressive MS when I was only 9 years old. Not only was it difficult losing a parent to MS, but I felt limited when it came to sharing my feelings and experiences. Camp Hope is an incredible, unique opportunity that gives kids in our area a chance to interact with other kids who are experiencing similar situations. Most importantly Camp Hope gives kids a week to forget about being the child of a parent with MS and gives them a week to just be a kid! I would have cherished a week at Camp Hope as a camper years ago, and that is the very reason why I chose to be a counselor last summer and why I will be returning this year! Needless to say, I am eager for the calendar to flip to July and head back for another week of excitement and adventure. n


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LIVING WITH MS

CAMP HOPE JULY 21-26, MAKANDA, IL

This program is just for youth ages 8-15 who have a loved one with MS or live with MS. It includes recreational and educational activities to help young people better understand the disease and ways to live with it in their lives. Programs and activities will be available for children living with MS and for children who have a parent or other relative living with MS. Activities include: • Swimming, canoeing, and pontoon boat rides • Adventure hikes and fishing • Campfires and evening entertainment • Arts and crafts and other creative activities • Horseback riding • MS education and sharing groups

KIDS AGES 8-15 HAVE FUN ON LAND AND AT SEA AT CAMP HOPE JULY 21-26.

DETAILS:

July 21-26, Makanda, IL Touch of Nature Environmental Center, Southern Illinois University (near Carbondale)

PROGRAM FEE:

MAKING NEW FRIENDS IS WHAT CAMP HOPE IS ALL ABOUT.

$150 per child. The fee includes all meals, overnight lodging, and activities. Scholarships are available. Contact Stacey at stacey.sickler@nmss.org or 314-781-9020.

REGISTRATION:

Each camper must complete an application online before being accepted to Camp Hope. Upon acceptance, you will receive detailed information and a billing invoice. Call 800-344-4867 option 2 or visit mscamphope.org. The deadline is June 21.

MAKE PLANS FOR YOUR CHILD’S SUMMER ADVENTURE AT CAMP HOPE THIS JULY!


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MS CONNECTION: SPRING 2013

TIPS FOR CAREPARTNERS

COMMUNICATION AND MS RELAPSES

My wife has suffered from her third MS relapse. After visiting her doctor, I was told she had been experiencing symptoms for weeks. She never mentioned the problems and still claims it was “not a big deal.” I’m very frustrated. How am I supposed to help her if she doesn’t tell me what’s wrong? John, MS CarePartner 1. Ask her if there is anything from the list Dear John, above that made it difficult for Communication can be as essential to caring her to share with for a loved one with MS as the doctors you about her and medicine. You’re right. It is difficult symptoms. If not, to care for someone if you do not have an what else concerned understanding of what is wrong. Before we her? KAREN TRIPP, MS LMFT look at solutions, let’s look at some reasons 2. Share with her how MARRIAGE AND FAMILY why people with chronic illnesses go through not talking about THERAPIST periods of withholding information about her symptoms their symptoms. impacted you. • They believe they can overcome the problem Even though you do not have MS, how themselves. things impact you is important. • They do not want to burden anyone else. 3. Discuss specific ways that she could share • They are not acknowledging the seriousness about new symptoms should the need of their symptoms. arise. (Who could she tell? When should • They are not confident that mentioning the she speak up? How would she like you to symptoms will do any good. respond?) • They do not believe that anyone wants to hear about it. Your job as a CarePartner is to consistently Although exploring these reasons will share that you are available to hear her concerns not solve the medical concerns, they will and her responsibility is to share her needs. provide an opportunity to improve the Remember: the solution to communication communication between the person with MS problems is not a single interaction but rather and their carepartner. Here are some ways an ongoing pattern where each of you openly you might want to approach your wife to discuss the difficulties which come from coping discuss the need for open conversations about with MS. n symptoms.


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LIVING WITH MS

FAMILY PROGRAMMING

LEARN. NETWORK. GROW. Connect with other people in your area

MANAGING MS AS A TEAM

CONNECTIONS

affected by MS and hear from an expert in the field of MS. Dinner is included in this free program.

APRIL 4, KIRKWOOD, MO, 5:30 P.M. Sapore Italian 451 S. Kirkwood Rd. St. Louis, MO 63022

Guest Speaker: Dr. Barry Singer

Neurologist Director of The MS Center for Innovations in Care Missouri Baptist Medical Center

APRIL 23, O’FALLON, IL 5:30 P.M. Regency Conference Center 400 Regency Park O’Fallon, IL 62269

Guest Speaker: Dr. Florian Thomas

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

MAY 9, CHESTERFIELD, MO 5:30 P.M. Oceano Bistro 16125 Chesterfield Pkwy West Chesterfield, MO 63017

Guest Speaker Dr. Mark Tullman

Neurologist The MS Center for Innovations in Care Missouri Baptist Medical Center

MAY 21, CAPE GIRARDEAU, MO

TBD. Check the Chapter’s website for details.

JUNE 13, JEFFERSON CITY, MO

TBD. Check the Chapter’s website for details. SPONSORED BY:

COUPLES RETREAT MAY 4-5, PERE MARQUETTE LODGE GRAFTON, IL

Having a satisfactory relationship is hard work even in the best of times. MS can make it harder. This Couples Retreat is designed to help you and your partner minimize the impact of MS on your lives and take charge as a couple through a creative mix of interactive courses, workshops and some time to relax at the beautiful Pere Marquette Lodge. Bring your spouse or partner to learn how to: • Break patterns that prevent effective communication • Apply successful problem-solving techniques • Work as team to manage MS and your relationship.

REGISTRATION: Space is limited to 15

couples. Cost is $90/couple. Call 314-7819020 or 1-800-344-4867. Deadline to apply is April 22. PLEASE NOTE: This program is NOT Spring Rendezvous. Spring Rendezvous will not be offered this year. Completing an application DOES NOT guarantee a spot at the program. You will receive information regarding your registration status within 2 weeks of turning in your application.


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MS CONNECTION: SPRING 2013

VOLUNTEER COLUMN

PAY IT FORWARD BY SPEAKING UP BY TODD FOLTZ MS ACTIVIST

When I’m asked why I advocate for the National MS Society, the answer is easy. It’s because of the rattlesnake and the ruptured tire. The explanation is more involved, of course. But the answer is easy. It boils down to paying forward a favor that came to me at a time when I was isolated, forlorn, desperate and fearing that no one could or would be able to help me. That’s a feeling that’s common, too, to anyone diagnosed with a chronic disease such as MS. A whole world you’ve spent a lifetime creating comes crumbling in on you, burying you in feelings of fear, despair, guilt and isolation. If you’re lucky, well-meaning friends and family members are there to support you, but they don’t know what to do. And all too often, they inundate you with cheerful books about celebrities who’ve gone on to become megasuccessful, and that only makes you feel smaller and more feeble. The last thing I wanted to hear when I was first diagnosed was how everyone else was just fine. All I knew was that my life had changed forever, that the very skills that made me who I was were under attack by my own body, and that I didn’t know what to do. And then I discovered the National Multiple Sclerosis Society. Like a lighthouse guiding my foundering ship, the MS Society gave me direction when my only direction was a whirlpool into the depths of a depression so deep I couldn’t

move.

I clearly remember when I was diagnosed at age 39. I’m a pet photographer, and I had just purchased my first professional IN FEBRUARY, TODD FOLTZ digital camera two days before ATTENDED MS ACTION DAY IN Christmas. JEFFERSON CITY WITH MORE Exactly 20 THAN 50 OTHER VOLUNTEERS. minutes after leaving the store, I felt like someone had plunged an ice pick into my left eye and scrambled my brain. I lost the vision in that eye and became dizzy, disoriented and confused. With visits to two hospitals and five doctors over the next week, the diagnosis was reached. I had MS. Sixty percent of those of us who are diagnosed are forced by the disease to leave the workforce within 10 years of diagnosis. That leaves us vulnerable to lack of adequate healthcare and insurance coverage, one reason the MS Society is making Medicaid expansion a priority. But MS, for many of us, can also be an “invisible” disability to outsiders. Because in the early and middle stages we aren’t always in a wheelchair or using assistive devices, we aren’t stereotypically and obviously “disabled.” But we nonetheless face grueling challenges on a daily basis through debilitating problems with cognition, vision, pain and other symptoms. And it is up to us to make it clear to our legislators why we need recognition


15

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

and assistance as federal law requires. No one else can speak as authoritatively as those of us who have MS can. And some of us with MS have more practice in presenting and advocating. We need to be the voice for those whose skills lie elsewhere. If we don’t speak up, who will? But you may be wondering about that rattlesnake. As twilight fell on a desolate Idaho desert highway, a tire blew on my rental car forcing me to the side of the road. With nothing to hold my car in place, I went into the volcanic rock field to the shoulder to get a rock to put behind a tire. I found a likely one, not thinking that it was a perfect place for a rattlesnake. When I lifted the rock, the snake struck. It hit my boot, then slithered off. I trudged back to my car, terror mounting. I was a hundred miles from the nearest town. It was getting dark. And the rental car didn’t have a jack. I couldn’t even change the tire. And then a minivan with two men pulled over. One changed my tire while the other tended my foot, which, I’m happy to say, had been protected by my shoe. When I asked if I could pay them, one of the men said to me, “Pay it forward.” And while I’ll admit it is in my best interest to advocate for the National MS Society, I also do it for everyone with MS who may not be able to do so for themselves. The MS Society does so much, raising money for research, for education and to provide much-needed educational services both to those newly diagnosed and those of us who have lived with it for awhile So for everyone who has MS, I will continue to advocate. I will continue to pay it forward. n

ADVOCACY WITH MS

SELF ADVOCATE

HERE’S HOW: UTILIZE NEW TOOLS TO SPREAD AWARENESS

Educating others about MS and speaking up for those living with the disease is something everyone can do. You don’t have to make speeches or invest a lot of time into advocating to be effective - a little bit goes a long way and EVERY CONNECTION COUNTS. To make this easier and spark some ideas, the Chapter has developed a variety of online tools and ideas that anyone can use at gatewaymssociety.org. Spice up your email and social media pages with: • downloadable videos • digital badges • email signatures • wallpaper • facebook cover photos. You can also learn how to: • hang MS awareness posters around town • host a fundraising event at a restaurant • successfully submit a letter to the editor • write a letter to your legislator. There are also lots of ideas on how to spread awareness in your spare time if you have 5 minutes, 30 minutes, a few hours or even more time. There’s something for everyone.


16

MS CONNECTION: SPRING 2013

BOARD OF TRUSTEES

SAFFRON SOCIETY STEPS UP SALES The Saffron Society is a group of women of the Gateway Area Chapter of the National MS Society impacted by multiple sclerosis who are rich in spirit and courage and are committed to: • strengthening each other • advancing the work of the Gateway Area Chapter, and • creating a world free of MS. Last year this dynamic group of women who are passionate about ending MS made the decision to assist the Chapter through the creation of items for sale that showcase the vibrancy of the Saffron Society with proceeds going the Chapter. Local artist Diane Katzman custom designed these two elegant items: a pure silk 58” by 11” scarf with a flowing design in orange, silver, grey, black and white that gives the feeling of movement, along with a pure silk silver gray tie that includes the Saffron Society logo in a subtle design. Both the scarves and ties are available on the “Shop MS” portion of the Chapter’s website (www.gatewaymssociety.org) for $50 each. For more information about the Saffron Society, please contact Chapter Board members Denise Pisciotta at joeyp1@gmail. com or Dr. Thy Huskey at thyhuskey@gmail. com who have been instrumental in starting this project.

BOARD MEMBER DENISE PISCIOTTA AND HER HUSBAND JOE MODEL THE SAFFRON SOCIETY’S SCARF AND TIE.

Silk Scarf $50

.00

The flowing design evokes movement, bringing to mind the MS Society’s motto: MS Stops People from Moving. We Exist to Make Sure it Doesn’t. Buy yours at gatewayMSsociety.org

The Saffron Society is proud to support the National MS Society with the sale of these elegant gift items custom designed by artist Diane Katzman.

Silk Necktie

$50 .00

Show your support of the MS movement when you wear this stylish Saffron Society necktie. Buy yours at gatewayMSsociety.org

Learn more about The Saffron Society at Facebook.com/SaffronSociety


ST. LOUIS, MO - MAY 31 – JUNE 2, 2013

3 DAYS 50 MILES

CONNECT

Walk 2013

CONNECT AT CHALLENGE WALK MS: A COMMUNITY OF SPIRIT & STRENGTH 3 DAYS. 50 MILES. ST. LOUIS, MO MAY 31 - JUNE 2, 2013

TO END MS

Challenge Walk MS is the perfect way to connect with others in our community who are passionate about ending MS. It’s a personal challenge of spirit and strength that brings people together who want to make a big difference in the lives of people living with MS. Challenge Walk MS will be the most rewarding journey you’ll ever make.

REGISTER WITH THE CODE CW13 FOR $10 OFF REGISTRATION: gatewayMSchallenge.org or 1.800.344.4867 Be there. Because every connection you make and every dollar you raise supports the mission of a world free of MS.


BE INSPIRED. GET CO

WALK TO CREATE A WORLD FREE OF MULTIPLE SCLEROSIS

Gateway Area Walk 2013

Walk MS connects people living with MS and those who care about them. When you participate in this community event, the funds you raise give hope to the more than 2.1 million people worldwide living with MS. We’ve been walking since 1988 and have raised more than $770 million to support life changing programs and cutting-edge research.


ONNECTED. WALK MS THERE’S ONE NEAR YOU

REGISTER, CONNECT WITH OTHERS AND START FUNDRAISING TODAY gatewayMSwalk.org or 1.800.344.4867 04.13.13

04.20.13

08.17.13

Arnold City Park Event 1 p.m. | Start 2 p.m.

SIU - Campus Boat Dock Event Noon | Start 1 p.m.

O’Fallon Community Park Event 10 a.m. | Start 11 a.m.

04.13.13

04.20.13

09.07.13

Stephens Lake Park Event 10 a.m. | Start 11 a.m.

Millstadt City Park Event 11 a.m. | Start Noon

04.13.13

04.21.13

09.21.13

Capaha Park Event Noon | Start 1 p.m.

Lions Lake Park Event 10 a.m. | Start 11 a.m.

04.21.13

09.28.13

Rothwell Park Event 1 p.m. | Start 2 p.m.

Dexter Event 10 a.m. | Start 11 a.m.

Arnold, MO

Columbia, MO

St. Peters, MO St. Charles Com. College Event 1 p.m. | Start 2 p.m.

04.14.13

St. Louis, MO Forest Park Event 1 p.m. | Start 2 p.m.

04.14.13

Edwardsville, IL Miner Park in Glen Carbon Event 1 p.m. | Start 2 p.m.

04.18.13

Night Walk Kiener Plaza Event 5 p.m. | Start 6 p.m.

Carbondale, IL

Millstadt, IL

Cape Girareau, MO

Moberly, MO

04.28.13

Kirksville, MO Stokes Stadium Truman State University Event 1 p.m. | Start 2 p.m.

05.11.13

Jefferson City, MO Memorial Park Event 10 a.m. | Start 11 a.m.

O’Fallon, IL

Mt. Vernon, IL Veterans Memorial Park Event 10 a.m. | Start 11 a.m.

Washington, MO

Bootheel Area, MO

09.29.13

Southernmost Illinois Anna, IL Event 10 a.m. | Start 11 a.m.


20

MS CONNECTION: SPRING 2013

RESEARCH MS

CONTINUING THE RESEARCH INVESTMENT The National MS Society’s MS NOW Campaign is dedicated to raising $250 million for MS research by the end of 2015. The goal is to: STOP all disease activity and prevent further progression for people already living with MS, RESTORE all function that has already been lost to nervous system damage from MS and to END MS and prevent it from ever occurring in the future. The Society recently invested in Dr. Marina Cella’s work at Washington University in St. Louis with a grant of $330,000. “My work mainly focuses on understanding how the immune system reacts to invading pathogens,” Dr. Cella said. Dr. Cella has been studying dendritic cells that are central to the development of the body’s immune responses against bacterial and viral infections. In 1999, Dr. Cella identified a novel cell subset in human peripheral blood related to the dendritic cell system, known as the plasmacytoid dendritic cells (pDCs). “These cells, in contrast to other DC types, are specialized in producing large amounts of a soluble factor, the Type I Interferon, which prevents the spreading of a viral infection,” Dr. Cella said. Dr. Cella comes to Washington University via the University of Genoa in Italy where she earned her medical degree, board certification and PhD in medical microbiology and virology. In 1994 she became a member of the prestigious Basel Institute for Immunology in

Switzerland.

Since her original identification of pDCs, hundreds of studies implicated this cell type in numerous human diseases including the pathogenesis of multiple autoimmune diseases. “A few reports have shown DR. MARINA CELLA that pDCs are present in WAS RECENTLY the brain of MS patients in demyelinating plaques, AWARDED A suggesting that they might $330,000 GRANT aggravate the disease,” Dr. Cella said. “However, BY THE CHAPTER. Interferon beta, a soluble factor that is abundantly produced by pDCs, is used to alleviate MS symptoms. Therefore, triggering pDCs activation might be beneficial in MS.” In the last two years Dr. Cella’s laboratory has generated an animal model in which pDCs can be specifically removed to determine their impact on immune responses. Taking advantage of this unique tool, Dr. Cella has shown that the presence of pDCs is critical to induce remission of disease in Experimental Autoimmune Encephalomyelitis (EAE), the animal model of MS. “I hope my research will ultimately indicate whether directly activating pDCs is a better therapeutic strategy and has less side effects than interferon beta administration in MS,” Dr. Cella said. n


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

TAke conTrol oF Your MS relApSeS Know Your Treatment Options If you’re unsatisfied with your current treatment for MS relapses—because it doesn’t work well or causes side effects that are hard to manage—you’re invited to a presentation created especially for you. You will learn from an MS healthcare professional about a different FDA-approved treatment option and hear a firsthand account of a patient’s experience with this treatment. You will also learn: •

How to distinguish between relapses and pseudo-relapses

About the importance of treating relapses

How to talk about relapses with your healthcare provider

About the available treatment options for MS relapses

Location

Hunan Asian Cuisine 710 East Main Street Carbondale, IL 62901

Date

Wednesday, March 27, 2013

Time

7:00 PM

Check-in

6:30 PM

Presented by

Lori Guyton, MD, MHS Herrin, IL

Please register by Tuesday, March 26, 2013. To register for this program, call 877-219-0410, or go to www.msrelapseprogram.com, and refer to Program 0998. A caregiver or friend is welcome to accompany you. ©2012 Questcor Pharmaceuticals, Inc. PM-542-02 04/12

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


22 LIVING WITH MS

MS CONNECTION: SPRING 2013

LIVING WITH MS

MS WELLNESS FAIR WELLNESS NETWORK The MS Wellness Fair gives people opportunities to meet with multiple health care professionals, as well as vendors. Light refreshments will be served.

Attendees will get the chance to: • Meet with a physical therapist and occupational therapist to assess strength, balance and mobility devices, perform a range of motion tests, and provide other various health screenings. • Meet with a variety of healthcare disciplines, i.e. social workers, speech therapists, registered nurses, and nutritionists. • Ask specific health and wellness questions. • Learn more about wellness programs and community wellness resources.

COST

$10 per person

JUNE 8, ST. LOUIS, MO, 9 A.M. - 2 P.M. Mercy Therapy Services 1176 Town and Country Commons Town and Country, MO 63017

JUNE 8, CAPE GIRARDEAU, MO, 9 A.M. - 2 P.M. St. Francis Medical Center 211 St. Francis Drive Cape Girardeau, MO 63703

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

MARCH 28, 7-8 P.M. MAY 23, 7-8 P.M.

AQUATICS AND MS Learn about: benefits, safety precautions and what exercises are offered

APRIL 25, 7-8 P.M.

EXERCISE RESEARCH AND MS Get up to date information on exercise research and new routines that can help you.

ADAPTIVE DEVICES Learn guidelines for using devices and how to stay active with each device.

JUNE 27, 7-8 P.M.

AT-HOME EXERCISES Discuss different exercise options for you to do at home and learn more about the Chapter’s athome exercise program.

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 monthly calls.


may 18

ARE YOU MUD-CURIOUS, MUCK-READY OR OTHERWISE PREPARED TO RISE TO THE DIRTY CHALLENGE?

THE MUCKFEST MS COURSE Straight out of Hollywood, our five-mile MuckFest MS course will wipe you out, literally. It’s got more thrills, spills, and sustained laughter than any obstacle run in the world! NOT YOUR OLD GYM TEACHER’S OBSTACLE COURSE Up for a go on The Spinner? Need to take a moment before stepping onto the Oh Crap? Go ahead, see how far you can jump off of the giant Swing Set. We have a gauntlet of 20+ steel-constructed obstacles designed to spin, swing and fling you up, down and sideways through the course.

NEW LOCATION! Buchanan’s Farm, Robertsville, MO - just 20 minutes from Six Flags in Eureka. REGISTER NOW AS PRICES WILL GO UP! Standard Registration By Sunday, April 28 for $75 Better Late Than Never By Wednesday, May 15 for $90 Day of Event Registration On Saturday, May 18 for $100

MUCKFESTMS.COM


24

MS CONNECTION: SPRING 2013

FUNDRAISING

SAM’S CLUB STEPS UP FOR MS SOCIETY During a campaign from January 18 through February 25, 2013, Sam’s Club employees across the country held fun and creative fundraisers, such as chili and bake sales, to help people with MS move forward with their lives. Over the last two years, Sam’s Club employees raised nearly $3 million through their determined grassroots fundraising efforts in order to benefit people living with MS and the essential research needed to end MS forever. As part of their commitment to giving back to the communities they serve, Sam’s Club has for a third year rallied and inspired employees to host fundraisers just outside club locations and through internal employee initiatives. In addition, they are continuing their support and encouragement of employee volunteer service hours at chapters across the country. At the Sam’s Club in Crestwood, Membership Manager Lauren Voyles said they sold special MS Society cookbooks, chocolate covered strawberries and popcorn, raffled off gift cards and held a silent auction. “We got off to a great start,” she said. “We consistently keep an information table at the entrance door and that makes at least $60 a day. We sold cookbooks, snack items, beads for Mardi Gras, and more.” Voyles also said it has been a learning

DURING A 5-WEEK CAMPAIGN SAM’S CLUBS ACROSS THE COUNTRY RAISED FUNDS AND AWARENESS FOR MS. LOCAL STORES ALSO SOLD SPECIAL COOKBOOKS AVAILABLE AT GATEWAYMSSOCIETY.ORG FOR JUST $12. experience for her and her team.

Cooking For A Cure

“I’ve met a lot of people who either have MS, have a family member or a friend who have MS so that’s been really neat,” she said. “People would walk up and say ‘Here’s $20, my sister has MS,’ or ‘Here’s $20, I have MS’ which is really kind of cool to open up your eyes and see how many people are affected by MS. It does affect so many people and you don’t realize it until you get into the trenches.” n Benefitting Gateway Are the of the Nation a Chapter al Mu Sclerosis Soc ltiple iety


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

TAke conTrol oF Your MS relApSeS Know Your Treatment Options If you’re unsatisfied with your current treatment for MS relapses—because it doesn’t work well or causes side effects that are hard to manage—you’re invited to a presentation created especially for you. You will learn from an MS healthcare professional about a different FDA-approved treatment option and hear a firsthand account of a patient’s experience with this treatment. You will also learn: •

How to distinguish between relapses and pseudo-relapses

About the importance of treating relapses

How to talk about relapses with your healthcare provider

About the available treatment options for MS relapses

Location

Bella Italia Ristorante 20 North Spanish Street Cape Girardeau, MO 63701

Date

Tuesday, April 30, 2013

Time

6:00 PM

Check-in

5:30 PM

Presented by

Max Benzaquen, MD Chesterfield, MO

Please register by Monday, April 29, 2013. To register for this program, call 877-219-0410, or go to www.msrelapseprogram.com, and refer to Program 0921. A caregiver or friend is welcome to accompany you. ©2012 Questcor Pharmaceuticals, Inc. PM-542-02 04/12

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


BIKE MS: GATEWAY GETAWAY RIDE » SEPTEMBER 7-8, 2013 » 20, 40, 75 AND 100 MILE ROUTE OPTIONS EACH DAY » COLUMBIA, MO REGISTER TODAY » GATEWAYMSBIKERIDE.ORG » 800 344 4867

Register Today:GATEWAYMSBIKERIDE.ORG OR 800.344.4867 Experience Bike MS – a two-day cycling getaway through gorgeous Missouri countryside. When you spend the weekend with 3,000 cyclists enjoying live entertainment, stocked rest stops, delicious meals, our Beer Garden, and the energy of Team Tent Village, you’ll know that Bike MS isn’t just any ride. Gateway Getaway Ride 2013

This is Bike MS.


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

TAke conTrol oF Your MS relApSeS Know Your Treatment Options If you’re unsatisfied with your current treatment for MS relapses—because it doesn’t work well or causes side effects that are hard to manage—you’re invited to a presentation created especially for you. You will learn from an MS healthcare professional about a different FDA-approved treatment option and hear a firsthand account of a patient’s experience with this treatment. You will also learn: •

How to distinguish between relapses and pseudo-relapses

About the importance of treating relapses

How to talk about relapses with your healthcare provider

About the available treatment options for MS relapses

Location

Trenton House 2 East Broadway Trenton, IL 62293

Date

Tuesday, May 7, 2013

Time

12:00 PM

Check-in

11:30 AM

Presented by

Lori Guyton, MD, MHS Herrin, IL

Please register by Monday, May 6, 2013. To register for this program, call 877-219-0410, or go to www.msrelapseprogram.com, and refer to Program 0988. A caregiver or friend is welcome to accompany you. ©2012 Questcor Pharmaceuticals, Inc. PM-542-02 04/12

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


28

MS CONNECTION: SPRING 2013

TALK MS GROUPS MISSOURI Camdenton Cape Girardeau

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

3/20, 6/19, 9/18, 11/20 6-7 p.m. 3rd Saturday

(no April meeting)

10 a.m.

Camden County Library 99 Rodeo Road, Camdenton, MO 65020

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

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 p.m. Columbia, MO 65203

Crystal City/ Festus

2nd Tuesday 1 p.m.

Jefferson City

1st Monday 6 p.m.

New London

2nd Tuesday 7 p.m.

Disability Resource Association 420B S. Truman Bl. Crystal City, MO 63019 Coca-Cola Bottling, Meeting Room 605 Washington, Jefferson City, MO 65109 Ralls County Health Department Building 405 W. 1st Street New London, MO 63459

Suzanne (573) 817-4673 or suzanne.dechazal@healthsouth.com Kim Williams kimik1ster@gmail.com Marlene (636) 464-2533 Sharon webradleys@yahoo.com Rebekah Walters (573) 808-4066 Rebekah.Walters@vr.dese.mo.gov

Debby (573) 267-3365 mlrdsr@att.net

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 mkrrd@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

Rolla

NEW GROUP

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 April 14, July 14, O’Fallon Oct. 13, 2-3 p.m. 3rd Sunday St. Charles 3 p.m. West County 4th Wednesday Prayer & 6:30-8 p.m. Health

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 Rose Marie sqsace@sbcglobal.net


29

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 NEW Highland Wednesday GROUP 10:30 a.m. S’myelin Gang 4th Tuesday of Litchfield 6:30 p.m. April 24. 7 p.m. Metro East June 26, 7 p.m. Aug. 28, 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 Meredith (217) 556-4418 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 David C. Pratt Cancer Center MS Fun, Mercy Hospital Friends & May 7, 6 p.m. 607 S. New Ballas Rd. Food 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 laurapieczynski@yahoo.com 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


30

MS CONNECTION: SPRING 2013

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 Dragonfly Health Spa & 1272 A Jungermann Yoga St. Peters, MO 63376 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 Jefferson College 1000 Viking Drive Hillsboro, MO 63050 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 636-498-5544 314-439-9622 314-521-1822 314-442-3428 314-432-5700 Christina 636-789-3000 314-965-9622 314-738-2599

ACTIVITIES OFFERED


31

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

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 Linda 314-729-0181 Jeff 636-896-0999 314-644-3100 314-849-9622 636-928-1928 Kathryn 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 Bruce 314-645-9785 Nancy 314-378-8639

YOGA

ZUMBA


32

MS CONNECTION: SPRING 2013

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 Pilates & Yoga at Chapel 2010 Chapel Plaza Ct. Suite A Hill Columbia, MO 65203 ILLINOIS ADDRESS 1200 Esic Drive Edwardsville YMCA Edwardsville, IL 62025 Jerseyville Wellness 400 Maple Summit Rd Center Jerseyville, IL. 62052 Logan College Road John A. Logan College 700 Carterville, IL 62918 1 Town Center Drive Maryville YMCA Maryville, IL 62062

CONTACT

ACTIVITIES OFFERED

573-874-7700 Linda 573-657-2614 573-761-9021 573-581-1540 573-446-0224 CONTACT

ACTIVITIES OFFERED

618-656-0436 Jennifer 618-498-6402 Chris 618-985-3741 618-346-5600

Mascoutah Senior Center

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 Sukha Yoga Center

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

Sarah 618-457-8186 Sarah 618-236-9642

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

Cape Girardeau Municipal Pool PARC Fitness Center Simply Yoga Xtreme Gymnastics Cheer and Dance

AQUATICS PILATES

TAI CHI

ACTIVITIES OFFERED

Pat 573-335-4040 Mindy 573-686-5985 Vicki 417-293-1184 Christi 573-785-3780

YOGA

ZUMBA


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:

Featured Specialist:

Barbara Green, MD April 14, 2013 at 11:30 a.m. Sapore Italian Cafe 451 South Kirkwood Road St. Louis, MO 63122

Heather Popham, RN April 18, 2013 at 6:30 p.m. Gentelin’s on Broadway 122 East Broadway Alton, IL 62002

Featured Specialist:

Featured Specialist:

Mary Kay Fink, RN May 7, 2013 at 6:00 p.m. Bartolino’s Osteria 2103 Sulpher Avenue St. Louis, MO 63139

Heather Popham, RN May 9, 2013 at 5:30 p.m. Hunan Village 710 East Main Street Carbondale, IL 62901

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 ©2013 Novartis 1/13 T-XMG-1234308

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

T-XMG-1187200


34

MS CONNECTION: SPRING 2013

P Program located

CHAPTER CALENDAR

in this area.

DATE

PROGRAM/ EVENT

PG. #

ST. LOUIS METRO

March 28

Wellness Network

22

'

April 4

Connections

13

P

April 8

Teleconference

36

'

April 13

Walk MS

18-19

April 14

Walk MS

18-19

April 18

Walk MS

18-19

P P P

April 20

Walk MS

18-19

April 21

Walk MS

18-19

April 23

Connections

13

April 25

Wellness Network

22

'

'

7

P';

';

April 28

Keeping Your Mind and Body Fit Walk MS

18-19

May 4-5

Couples Retreat

13

May 9

Connections

13

May 11

Walk MS

18-19

May 13

Teleconference

36

May 18

Muckfest MS

23

May 23

Wellness Network

22

April 27

May 21

Connections Family Evening at May 31 Busch Stadium May 31 Dean Team Automotive to June 2 Challenge Walk MS June 8 MS Wellness Fair

13

June 10

Available via

' telephone

;

Available via live-stream

ILLINOIS SOUTHERN MIDILLINOIS MISSOURI

SEMISSOURI

'

'

'

'

'

'

'

'

P P P

P P

P

'

'

'

';

';

';

P

P P P P

'

'

'

'

'

'

'

'

'

' P

9

P

17

P

22

P

Teleconference

36

'

June 13

Connections

13

June 27

Wellness Network

22

July 8

Teleconference

36

P

'

'

'

'

P

' '

' '

' '

' '

' '


35

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

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.” 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 | www.gatewaymssociety. org MS Connection © 2013 A quarterly magazine published by the National Multiple Sclerosis Society, Gateway Area Chapter. Chapter President • Phyllis Robsham Writers • Joe Cavato • Todd Foltz • P. Tyler Roskos, PhD, ABPP • Jaclyn Muff • Kathi Taylor • Karen Tripp • P. Tyler Roskos, PhD, ABPP

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.

[ [ [ [ [ [ [ [ [ [ [ [ [ [ [ [ [

] Wellness Network March 28 COST: FREE PROGRAM ] Connections, Kirkwood, MO April 4 COST: FREE PROGRAM ] Teleconference April 8 COST: FREE PROGRAM ] Connections, O’Fallon, IL April 23 COST: FREE PROGRAM ] Wellness Network April 25 COST: FREE PROGRAM ] Keeping Your Body Fit, St. Louis, MO April 27 COST:$10/person ] Couples Retreat May 4-5 COST: $90/couple ] Connections, Chesterfield, MO May 9 COST: FREE PROGRAM ] Teleconference May 13 COST: FREE PROGRAM ] Connections, Cape Girardeau, MO May 21 COST: FREE PROGRAM ] Wellness Network May 23 COST: FREE PROGRAM ] Family Evening at Busch Stadium May 31 COST:$30/PERSON ] MS Wellness Fair June 8 COST: $10/PERSON ] Teleconference June 10 COST: FREE PROGRAM ] Connections, Jefferson City, MO June 13 COST: FREE PROGRAM ] Wellness Network June 27 COST: FREE PROGRAM ] Teleconference July 8 COST: FREE PROGRAM

Gateway Area Walk 2013

GATEWAYMSWALK.ORG

GATEWAYMSCHALLENGE.ORG Walk 2013

MUCKFESTMS.COM

Getaway GATEWAYMSBIKERIDE.ORG Gateway

Ride 2013


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

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

’RE NOT MAI LS U O Y : I FY G OU R E t of our G ETTerI Nyou optedno’tuhave an u’d

Eith or we do you. If yo u emails address for ack in so yo er email be opted b tant Chapt like to ceive impor4-4867. can re all 800-34 c news

LIVING WITH MS

MIDWEST TELECONFERENCE SERIES DIAL. LISTEN. LEARN. Calm Before the Storm

April 8, 7-8 p.m. • Learn how to plan for a natural disaster and gain insight into special considerations for people with disabilities. • Explore community resources to help. Presented by: Teresa Lange, Preparedness Specialist, St. Louis Area Chapter, of the Red Cross It’s Not Just In Your Head May 13, 7-8 p.m. • Learn the prevalence of common MS symptoms of anxiety, depression and mood swings. • Understand causes of these symptoms and strategies to manage them. Presented by: Julie Bobholz, PhD, Neuropsychologist, Aurora BayCare Clinic and Froedtert Hospital/Medical College of Wisconsin

My Family Has MS, June 10, 7-8 p.m. • Learn how MS impacts all family members. • Explore communication methods and strategies for dealing with family life challenges. Presented by: Rosalind Kalb, PhD, Vice President of the NMSS Clinical Care Network WAKE UP! July 8, 7-8 p.m. • Learn why fatigue and sleep issues are two of the most common and debilitating MS symptoms. • Explore medical treatments, strategies and behavioral changes that may help. Presented by: Douglas Schell, MS Certified Nurse, Mid America Neuroscience Institute Midwest Teleconference Series

Midwest

MS Connection - Spring Edition 2013  

Inside this issue: Leader Connects with Talk MS Group, Osmond to Speak at Annual Luncheon, Chapter Headed to Busch Stadium, Campers, Counsel...

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