MS Connection | Summer 2010

MOVING TOWARD A WORLD FREE OF MS | SUMMER • 2010

GATEWAY AREA CHAPTER

This is Why I Ride

2 | JOIN THE MOVEMENT: nationalMSsociety.org

More than 6,300 people in our area are diagnosed with MS, but the disease affects many, many more. MS affects spouses, siblings, children, parents, friends and caregivers of people who live with MS. Bud Straumann (on the cover) rides in Bike MS for his wife Cindi. Participating in Bike MS is something he can do to support his wife who lives with the unpredictability and frustration of MS. In this issue of the MS Connection, read about what other people who have loved ones living with MS are doing about MS.

FeaturesTHIS IS WHY I RIDE | 3

Bike MS, wife inspire veteran cyclist to keep pedaling

A DIFFERENT KIND OF EDUCATION | 4

Past Chapter scholarship winner learns life lessons from father

ADVOCATING FOR MS | 5

Cyclist goes the extra mile, venturing into politics as an MS advocate

SUMMER SWIZZLE | 6

Unique fundraising event is just around the corner

THIS IS WHY I DONATE | 7

Golden Circle members take on MS day by day

GET DIRTY FOR MS | 16

The Chapter’s inaugural Mud Run lets participants get down and dirty, while raising money

ON THE COVER

INSIDE THIS ISSUE

In Every IssueVOLUNTEER COLUMNS | 8-9

Parents inspire these volunteers to JOIN THE MOVEMENT

ASK THE PROFESSIONAL | 10

Karen Tripp, Marriage and Family Therapist, explains what a caregiver can do to keep from becoming overwhelmed

FROM THE BOARD | 11

Mother’s courage inspires David Kodner to help make a difference.

GETTING TO KNOW US | 12

Finance and Administration Department keeps Chapter moving behind the scenes

MS BRAIN GAMES | 13

Exercise your mind with an MS word search

CHAPTER NEWS BRIEFS | 14

Read about what’s going on in the Chapter

RESEARCH | 15

Updates on the progress of oral drugs and information about CCSVI

FROM THE PRESIDENT | 18

A letter from Chapter President Phyllis Robsham

HAPPENINGS | 19-36

Upcoming Chapter programs and services

E M K E S D N E I R F E L E T I R C G SC K E E P S M Y E L I N F M N E E N U NN I N O X M N E T A N O D W W I I T A OE S E E H K E X S M A N I O R N N T E YR C W B L L R D O I N T P P N P T T R EE D C I A A R A U E C S A A T D E A U GF C O N N W Y E A C I R L I N I R K B ON S N F I E A O T E A P E K C B S E S LO P N E O G L L G P L T L X I H H A R DC U E N R N H D K A A T E L E O I C E EE O C I S E E T I M S H G I O A P T K NL R T L I L F C O B S N C R N T S I A CE G I A W L N F C F I S A Y R S A O E IT S O O U A Y G I D S K E M A A P N P RA M N R N H P C N D T T E N T W Y I S CC K S I P C S E M V A S A M L A E R R LO L F M K A L H T N N E P R S L E T B EV A Q U A T I C S O C E K E S L E I A CD T O V O L U N T E E R S A L A E W R GA R E S E A R C H M S C H A M P I O N S

Advocating for MSPAGE 5

Ask the Professional PAGE 10

From the BoardPAGE 11

MS Brain GamesPAGE 13

WORD SEARCH

WHY WE RIDE – BIKE MS INSPIRES PARTICIPANTBud Straumann remembers well the night his wife Cindi was diagnosed with MS. It was the day after Christmas in 1996.

“She has always been super sensitive and jumpy to the touch, but when I put my hand on her knee she didn’t flinch,” Bud said. “It was the first time I touched her like that and she didn’t flinch. I recognized that she didn’t feel it.”

With the diagnosis came fear.

“We were terrified,” Bud said. “We didn’t know what the future was going to be and we were both thinking the worst.”

Cindi’s initial neurologist didn’t calm their fears.

“It was an odd experience with her first neurologist because he encouraged us to keep it quiet with insurance and said there were no real treatments,” Bud said. “My wife made up her mind to get a new doctor. She thought if she

was going to be faced with this she wanted to be as proactive as she could.”

Bud, an avid runner, joined the movement in helping create a world free of MS about six years ago. Bud and Cindi donated to one of Bud’s running buddies who participated in Bike MS.

“Afterwards he sent a really touching letter and a Bike MS Champion bandana to us,” Bud said. “I looked at my wife and said ‘if anyone is going to ride for you next year it’s going to be me.’ That’s when I started to get involved.”

Ever since, Bud has ridden with Team Sirius at Bike MS.

“I wanted to do it because it’s a bit of a challenge, I like exercise and being outside,” Bud said.

But the ride has been much more than that.

“The most amazing thing is there are all sorts of different people who participate,” Bud said. “Some are really good riders, some aren’t so good, some are competitive and some aren’t. Some make an athletic event out of it and I prefer to putz along and meet as many people as I can. To hear stories from other people who have MS or who have a family member who has MS is really inspiring.”

As the husband of someone with MS, Bud has also been touched

by people’s generosity during his fundraising campaigns.

“Some of the responses I’ve gotten have completely surprised me,” Bud said. “My aunt who I am not really that close with sent in a really nice check and an even nicer letter. A woman at my wife’s work, who she hardly knew, wrote a check for $200. It’s the surprise responses that keep you going.”

Since 2005, Bud has raised more than $30,000 to help create a world free of MS. He rides not only for his wife, but for everyone he has met whose lives are affected by MS.

“We’ve met a lot of people through the MS Society who haven’t been as fortunate as us health wise or financially,” Bud said. “I ride and fundraise for them as much as anything else.”

He also rides for the experience of connecting with people along the route and at rest stops.

“The stories and the discussions get so intimate when you meet somebody at a rest stop who is thanking everybody for being out there because his son, daughter, wife or husband has MS,” Bud said. “You stop for a second and you talk with them and it’s just so human to reach that level with people. It’s an amazing experience.”

TOLL FREE NUMBER 1 800 344 4867 | 3

EVENTS

In Every IssueVOLUNTEER COLUMNS | 8-9

Parents inspire these volunteers to JOIN THE MOVEMENT

ASK THE PROFESSIONAL | 10

Karen Tripp, Marriage and Family Therapist, explains what a caregiver can do to keep from becoming overwhelmed

FROM THE BOARD | 11

Mother’s courage inspires David Kodner to help make a difference.

GETTING TO KNOW US | 12

Finance and Administration Department keeps Chapter moving behind the scenes

MS BRAIN GAMES | 13

Exercise your mind with an MS word search

CHAPTER NEWS BRIEFS | 14

Read about what’s going on in the Chapter

RESEARCH | 15

Updates on the progress of oral drugs and information about CCSVI

FROM THE PRESIDENT | 18

A letter from Chapter President Phyllis Robsham

HAPPENINGS | 19-36

Upcoming Chapter programs and services


MS Brain GamesPAGE 13

WORD SEARCH


PROGRAMS

GROWING UP WITH MS PROVIDES DIFFERENT KIND OF EDUCATION

Growing up with a parent who lives with MS, Colleen Walker never knew what each day would bring. Some days it was difficult doing the simple things like grocery shopping or going out to eat. Sometimes her father might have to go spend a couple of nights in the hospital.

“My dad was also unable to play basketball or other sports in our front yard with my brother, sister, and me, which I think most kids take for granted,” Colleen said.

However, the family adjusted to handling the symptoms as they arose and took each day as it came.

To assist people affected by MS and their children who are pursuing secondary education, the National MS Society provides scholarships to accredited educational programs. In 2006, the Chapter awarded Colleen one of the scholarships. Now she is a senior at Missouri State University majoring in accounting.

“This scholarship has supported me in reaching my goal of

graduating from a university and becoming a contributing member of society,” Colleen said.

In between classes, Colleen watches the St. Louis Cardinals, plays volleyball and spends time with family and friends, especially her father who was diagnosed with MS 12 years ago.

Despite challenges the family faced, Colleen considers herself lucky to have such a supportive and strong father, who is determined to make it to every one of her sporting events and special occasions.

Unable to work, her dad is now home and able to spend more quality time with Colleen and her siblings without job stress, something she is very grateful for.

Like most people living with MS and their families, Colleen hopes more people will become aware of MS and involved with the disease in order to help develop a cure.

“I also want people to know that disabled people, not only people with MS, are regular people,”

Colleen said. “There is no need to treat them any differently. They are people too and deserve the same respect and treatment as everyone else.”

Gateway Area Chapter scholarship winner Shannon Walker learned many valuable lessons from her father Jim Walker.

Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. The National MS Society’s medical advisors recommend that people with MS talk with their health-care professional about using one of these medications and about strategies and effective treatments to manage symptoms. The National MS Society is committed to ensuring that people with MS have the information and quality care they need to live healthy, productive and independent lives. If you or someone you know has MS, please contact the National Multiple Sclerosis Society today at www.nationalmssociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

CALL TO ACTION


ADVOCACY

CYCLIST MAKES VOICE HEARD AT ADVOCACY DAYS

Rebecca Northern knows all about MS, how the disease can progress and how it can take things away.

“There have been a series of losses,” Rebecca said. “You recognize that loss. Adjust to it. Adapt to it and grieve about it in a way and you just move on.”

Rebecca doesn’t have MS, but she lives with it - her partner Lorrie Bielicke has MS. Lorrie’s personality, spirit and positive attitude certainly make the MS secondary.

“Lorrie is such a positive person with such an amazing spirit,” Rebecca said. “They talk about how you should recognize there’s a person first who happens to have a disability. With Lorrie that’s so easy because of the way she presents herself and lives her life and it’s ‘oh by the way I have MS.’ She’s always focused on what she can do and the positive things in life.”

It’s not in Lorrie or Rebecca to be complacent or just hope for good things to happen. They truly want to make a difference. Rebecca has ridden in Bike MS with Michael’s Ramp, a team that rides for Lorrie, since 2002. Rebecca and Lorrie made their voices heard as they participated in Missouri’s Legislative Action Day in 2009.

“Lorrie and I are both news junkies and are politically aware so we had an interest in politics and it was an exciting chance to have our voices heard in a different way,” Rebecca said. “You can send emails to your legislators and give them your opinions about various issues, but it’s another thing to go and meet someone face to face. You get the opportunity to help them put a face to MS and have them realize that this is a real person MS affects.”

Just like the first Bike MS experience hooked Rebecca, her first legislative action day experience did the same as Rebecca and Lorrie were among Chapter

representatives in Washington, D.C. at the 2010 Public Policy Conference.

“With it being an election year and with health care issues being front and center, the legislators seemed more interested in what we had to say,” Rebecca said. “We got Congressman Roy Blunt to agree to one of the issues that we were there to represent so that was pretty exciting.”

While visiting the nation’s capitol and meeting politicians can be exhilarating, Rebecca knows that progress takes time.

“I’m not under the illusion that every legislator is going to vote on every issue the way we want them to, but it certainly is a start,” Rebecca said. “Our goal is to make government officials who do make the decisions more aware of MS and help them see the needs of people with MS.”

Rebecca Northern (back row, second from right), who rides in Bike MS for her partner Lorrie Bielicke (front row, first on left), was among the Missouri contingent in Washington, D.C. at the Public Policy Conference.

CALL TO ACTION

swiz-zle [swiz-uhl]: noun, 1. a social gathering for conversation and entertainment; 2. a group gathered for a special purpose; 3. a celebration with sassy casual dress.

Come and join us at the Premier St. Louis Event whose goal is to finally wipe out MS

What’s it all about?

Simple really....it started in 1999 when Bill Gillispie, an employee of Save-A-Lot, was first diagnosed with MS. Rather than let his diagnosis overtake him, he decided to make a difference, to get involved, and help stamp out a terrible disease that affects more than 6,300 people in our area. When you include family, friends and co-workers that number swells to many, many more.

You see, Bill may have MS, but it doesn’t have him, and we’re pleased, and very proud to announce, that he’s now a Central West End resident, and with the encouragement and support of his fiancee, Gretchen, and the rest of his amazing and dedicated team, his efforts have raised more than $925,000 in nine years...close to his self-imposed goal of one million dollars, which will go a long way in continuing the cutting-edge research and funding necessary programs, as we try, together, to eradicated this destructive disease known as MS.


Get involved and help make a difference while enjoying a great band, silent and live auctions, door prizes and gourmet food, all while mingling and checking out a world-class collection of fine, perfectly restored, vintage automobiles.

Where: Kemp Auto Museum 16955 Chesterfield Airport Rd. Chesterfield, MO 63005

When: Saturday, June 26, 7 p.m.

Cost: $75 per guest includes valet parking, beverages and a large selection of fine hors d’oeuvres

To make your reservations or to get more information go to:

facebook.com/summerswizzle

EVENTS

TEAM GILLISPIE HOPES TO GET CLOSER TO ONE MILLION RAISED MARK WITH SUMMER SWIZZLE

DONOR


LIVING WITH MS ONE DAY AT A TIME

When MS bullied its way into the Shifrin family, they didn’t know what tomorrow would bring. In fact, they still don’t. That’s why they simply live with the disease one day at a time.

After feeling numbness in her feet that crept its way up her legs, Marnie Shifrin was diagnosed with MS about three years ago. When Marnie and her husband Jeff were told of the diagnosis, they weren’t sure what to do.

“I don’t know what you can do,” Jeff said. “I found out about it one day and the next day I went to work. There wasn’t a whole lot to do. You try to figure out what it is, what you have to deal with, and go forward.”

The Shifrins have moved forward dealing with whatever MS puts in front of them every step of the way. Now they have two sons, Matthew, 3 and Jake, 8 months.

There is no secret formula or routine that makes life easy or fends off the symptoms of MS for the mother of two young children. But the family lives with it and Marnie takes the painful injection every night.

One thing the Shifrins have done is join the Chapter’s Golden Circle. The Golden Circle program is a prestigious individual giving program recognizing the leadership and commitment of those giving annual gifts of $1,000 or more.

“We donate for an obvious reason: I’d like there to be a cure,” Jeff said. “It’s the issue that most impacts my life at this point.”

In the meantime, the Shifrins have hired a nanny to help with Matthew and Jake as Marnie does her best to take care of herself.

“She’s had some rough times. The second pregnancy was really rough,” Jeff said. “She’s trying to get onto an exercise program now and hopefully that’ll help. She does what she can to get through the day and see what tomorrow brings.”

Kim, Diagnosed in 1986

Get involved and help make a difference while enjoying a great band, silent and live auctions, door prizes and gourmet food, all while mingling and checking out a world-class collection of fine, perfectly restored, vintage automobiles.

Where: Kemp Auto Museum 16955 Chesterfield Airport Rd. Chesterfield, MO 63005

When: Saturday, June 26, 7 p.m.

Cost: $75 per guest includes valet parking, beverages and a large selection of fine hors d’oeuvres

To make your reservations or to get more information go to:

facebook.com/summerswizzle FOR MORE ABOUTTHE GOLDEN CIRCLE

Contact Beth Bauer Director of Individual Giving at [email protected] or 314-446-4177.


My dad was diagnosed with MS when I was in elementary school – long before I had any understanding of the disease. It greatly impacted my family’s life as his mobility gradually dissipated. It was frustrating feeling like I was limited in my ability to help and support my dad.

Now, with my parents living in Florida, I deal with the constant emotional struggle of pursuing my adult life while not having the opportunity to assist and interact with my dad on a regular basis. It’s particularly tough when I hear he is having a “difficult” day. While going to medical school so I could find

a cure for MS has crossed my mind, I chose the more practical road of supporting my local chapter of the National MS Society.

My first step five years ago was to ride in Bike MS in honor of my dad. The sense of accomplishment crossing the finish line as well as witnessing all the support from the many riders and volunteers was indescribable. It was truly an introspective, emotional 200-mile journey for me. I realized I could help make a difference.

Since then, I have increased my involvement by volunteering and participating in the many fantastic Gateway Area Chapter events. My girlfriend and I particularly enjoy Family Evening at Grant’s Farm. I relish the opportunity to observe other families impacted by MS and spend quality time together at such a unique place. The evening provides memories that can never be taken away and allows me to reflect on all of my wonderful childhood memories, both before and after my dad’s diagnosis.

My latest association, and undoubtedly the most exciting, has come in the way

of the recently formed Young Professionals Group. In an effort to create MS awareness, raise funds and get this group of 25-40 year olds in gear, I unsuspectingly found myself as the Chairman for the Inaugural Night on the Greens. Though the challenges of building an event from scratch, particularly one as unique as a glow-in-the-dark golf tournament, are immense, the thought of developing an event that advances the cause of the MS Society, generates interest amongst a younger demographic and raises much needed funds for hopefully many years to come is just phenomenal!

MS has slowed my dad down but he hasn’t let it stop him from being the best father I could imagine. He has been my role model since Day 1 – his kindness, humor and willingness to help others are second to none. Through my involvement I feel that I am honoring him, helping others like him and paying back anyone that has given him a helping hand during his battle with MS. I just try to live my life in a way that makes him proud and hope that I can make a positive impact toward freeing the world of MS.

VOLUNTEER

JONATHAN REEDERYOUNG PROFESSIONALS VOLUNTEER, BIKE MS PARTICIPANT

THROUGH THE EYES


DONOR

ALEX AND SAM GANDTADMINISTRATIVE VOLUNTEERS

In December of 2003, our mom was diagnosed with MS. We were in 8th grade and the first year in high school at the time. We were very shocked and confused, not knowing exactly what this disease was.

We noticed she was getting weak, had pains in her joints, couldn’t grip things as well as she used to, and eventually had to use a cane to get around. Everything that used to be fun and easy, like shopping at the mall, going places, and other things, wasn’t as easy anymore.

Usually when our mom has trouble walking, one of us stays behind and stays with her while she walks. Even though she looks weak sometimes, she still always wants to do things herself, and goes out of her way to help other people.

She also doesn’t want to be known as “handicapped”, so she tries to do as much as she can to make it look like she has no illness at all. Our dad is always there for her and we are very thankful and lucky to have him helping her every day since we

are both away at school now and are not with her as much as we used to be.

Our mom having MS has changed our perspective on life. We realize we need to be more helpful to people in need and should lend a helping hand. We see her struggle but overall she has a good outlook on life and doesn’t focus on her illness. We look up to her and know that no matter what she is a great mom and will be there for us as much as we will be there for her.

Our mom volunteers in the office at the Chapter and the MS Society has become part of her family. When we come home from college, we enjoy going with her to help complete

mailings or other projects that need be done. The MS Society is there for her and we want to help any way we can to help find a cure for MS.

VOLUNTEERTHROUGH THE EYES OF VOLUNTEERS

VOLUNTEER OPPORTUNITIES

Join the Movement and help at a great event. We could use your help at our inaugural Mud Run at Harrah’s Casino June 26, at Bike MS in Columbia September 11-12 or at one of our fall walks in August and September.

Inspired by their mother Eileen (right), Sam (middle) and Alex (right) Gandt volunteer in the office for the Chapter.


ASK THE PROFESSIONALPATIENT QUESTION: How Can You Prevent a Caregiver from Becoming Overwhelmed?

Karen Tripp Marriage and Family TherapistBEING A CAREGIVER ISN’T EASY.

Actually, it can be stressful, exhausting, infuriating, depressing and it can even make you sick. Statistics show caregivers typically have higher anxiety, more depression, lower immune systems and a shorter life expectancy than their non-care giving peers.1

Caregivers need to take care of themselves as they do their loved ones. On a good day this is difficult, other days it seems impossible. After all, how can you take care of yourself, when the needs of someone living with MS are so much greater? Just remember that being physically and emotionally healthy as a caregiver is an important gift for a loved one living with MS.

The first step is acknowledging stress before the body begins to show stress-related symptoms and to ask for help.

The second step is to accept help. If people say “Is there anything I can do?”, the correct answer is “YES!” By letting others assist with simple daily needs and chores, caregivers can better care for loved ones.

The third step is to build a core support group. Two or three emotionally supportive people can make a world of difference in the life of a caregiver. These are not the people to help you with a broken car.

These are the people who can help you with a tired and sometimes hurting heart.

To find your core support group, just answer this question: who can ask you, “How are you doing,” and get an honest answer? It’s important to talk about your difficulties and seek out caring people to listen. If you do not have the emotional support you need, locate an MS caregiver support group (see pages 26-27).

Don’t let the needs of the person living with MS overshadow the needs of the caregiver. Acknowledge the stress in your life and reach out for support now, before you become overwhelmed.

MS CONNECTION

1 National Family Caregivers Association. Ed. Sandy Rogers. N.p., n.d. Web. 13 Apr. 2010. www.thefamilycaregiver.org/who_are_family_caregivers/care_giving_statstics.cfm#7.

Carole, diagnosed in 2005

TOLL FREE NUMBER 1 800 344 4867 | 11

Why did I join the movement? During my senior year in high school, my mother was diagnosed with MS. In fact, I happened to be the one who drove her to the appointment when her doctor told her the news. He had thought he already told her, but he had not, and when she got back into the car, she broke down in tears, one of the very few times I have seen my mother cry.

From that day forward, MS has affected my entire family. That was 27 years ago, and we knew very little about the disease, and even less about how to care for someone with it. Of course my father, the selfless and dedicated man that he is, stepped up to the plate to make sure my mother had the support she needed to continue the normal life she was determined to have no matter how difficult having MS was on her.

I went away to college, and did not move home to St. Louis for another 16 years. During that time, I watched my mother’s MS progress from afar, and although I gained inspiration from her refusing to give in to her limitations, I was largely

unaware of her difficulties and never had a real connection to what it was like to live with MS. It was not until my wife and I moved back to St. Louis in 2000 that I began to really understand the challenges my mother and the hundreds of thousands of other people with MS have to deal with in their daily lives. That’s when I began to get involved. I learned of the amazing Gateway Area Chapter of the National MS Society that offered everything from education about MS to real support for those with the disease and their caretakers. The programs and services offered give so much more hope to those with MS than I could have ever imagined when my mother was diagnosed.

My entire family began participating in Walk MS. It was amazing to see the thousands of people, some directly affected, some family members, and some with friends who have MS, dedicate their time, energy and money to helping those in need. It made me realize there was so much more I could do to help. I was then recruited as a Corporate Achiever for the Chapter. That led me to meet Dr. Barbara Green, and really starting to understand my mother’s challenges, and

the even harder challenges that so many face without the familial support my mother had. I realized I could use the resources of my business and my time to raise money year round for the Chapter, using our Time for a Cure campaign in the store and donating jewelry to programs like the Women On the Move luncheon and other fundraisers.

Thanks to Lynda Baris, Board Chair, I was offered the opportunity to have much more involvement by joining the board of trustees last year. I can honestly say this past year has been more fulfilling than any time in my life. I have been so inspired by the dedicated and hard-working staff of the Chapter. Every member of the staff I have met is truly

FROM THE BOARDDAVID KODNER

BOARD OF TRUSTEES

David Kodner and his wife Michelle at Walk MS in Clayton on April 11

CONT’D ON NEXT PAGE

1 National Family Caregivers Association. Ed. Sandy Rogers. N.p., n.d. Web. 13 Apr. 2010. www.thefamilycaregiver.org/who_are_family_caregivers/care_giving_statstics.cfm#7.

Carole, diagnosed in 2005


FINANCE AND ADMINISTRATION TEAM WORK BEHIND THE SCENES TO KEEP CHAPTER MOVING It’s that time of year again, when members of our Finance/Administration team are especially busy at their computers, making sure those Walk MS donations are counted and credited to each participant, doing their part toward execution of a smooth and successful event. And speaking of events, they are usually the people you see at all event registrations gathering and counting donations and handing out t-shirts and prizes.

Throughout the year, they are the friendly voices you hear when you call and the first smiling faces you see when you come in to the Gateway Area Chapter office. They ensure that someone is available to answer the phones at all times during business hours and strive to make sure every call is answered

quickly and the callers’ questions or concerns are directed to the appropriate person.

Finance and Admin folks work with the Programs and Services department to make sure all client assistance checks are processed quickly. In fact, they are responsible for making sure that all Chapter invoices are paid in a timely manner and they also ensure that donors’ money is directed to the area they specify (i.e. research, local programs and services, scholarships, etc.).

While this team isn’t always visible, they are always working hard behind the scenes to maintain the integrity of our data base and the quick and accurate processing of your donations.

GETTING TO KNOW US

The Chapter’s Finance and Administration Department includes (from left): Lisa Klaus, Sandra Putney, Karen Dolan, Laura Choate, Teshia Cross and Janice Bradford

dedicated to the cause, and they work tirelessly to provide people living with MS and their families the finest support imaginable.

The members of the board are an incredibly active group of individuals who dedicate so much of their time and resources to all aspects of life with MS. They serve as a constant inspiration to me of how much can really be done in the pursuit of a cure, the exploration of new therapies, and the raising of funds to support those with MS.

The theme of this issue of the MS Connection is “I don’t have MS, but it affects me.” When I

think about my mother, I find the true effect that MS has had on me. Her resolve from the very beginning to not let MS control her life has had the greatest impact on me. When I think about the pain that she never admits to, her unwillingness to give in or give up, and her dedication to helping others with MS, it makes any problem in my personal life or business seem not only insignificant, but solvable. I wish for a world without MS, but until that time, I am grateful to know so many just like my mother and the great effect they have on all of those around them.

FROM PAGE 11

TOLL FREE NUMBER 1 800 344 4867 | 13

MS BRAIN GAMESMS WORD SEARCH PUZZLEThese words and their meaning can be found at gatewaymssociety.org


• ADVOCATE

• AQUATICS

• BIKE MS

• CHALLENGE WALK MS

• DONATE

• EDUCATE INSPIRE

• EXERCISE

• FINANCIAL ASSISTANCE

• FINANCIAL PLANNING

• GATEWAY CHAPTER

• GOLDEN CIRCLE

• INTERNSHIPS

• KEEP SMYELIN

• KNOWLEDGE IS POWER

• LENDING LIBRARY

• MAKE A DIFFERENCE

• MS CHAMPIONS

• NEW CONNECTIONS

• NIGHT OF STARS

• RESEARCH MS

• SPEAKERS BUREAU

• TAI CHI

• TAKE ACTION

• TALK MS GROUPS

• TELECONFERENCE

• TELEFRIENDS

• VOLUNTEERS

• WALK MS

• WELLNESS

• YOGA

ANSWER KEY ON PAGE 14

NOTE: MULTIPLE-WORD PHRASES DO NOT HAVE A SPACE ON THE WORD GRID. SOME WORDS OVERLAP.

NEWS BRIEFS

WOMEN ON THE MOVEThe Chapter celebrated its second annual Women On the Move Luncheon at the Four Seasons Downtown with guest speaker Maureen Manley. Manley shared her story of being diagnosed with MS while at the pinnacle of her cycling career.

The Chapter also honored its three Women of Courage: Mary Jinkerson, Shannon Ondracka and Cathy Poe. Congratulations to our honorees!

THANKS TO ANTHEM BLUE CROSS/BLUE SHIELD!The Anthem Blue Cross/Blue Shield Foundation provided a $25,000 grant to the Chapter on March 13. The grant will support the Chapter’s Wellness Programs. Keith Schieler, Director of Sales for Anthem BCBS, presented the check to Chapter President Phyllis Robsham.

GIVE A DAY GET A DISNEY DAYDisney’s “Give a Day Get a Day” program provided a great opportunity for the community to get involved with the National MS Society. On a cold Saturday in February 60 volunteers came into the office to help complete a mailing.

Another group of volunteers delivered National MS Society literature and books specific to MS to our 90-county regions.

During Walk MS season more than 400 Disney volunteers helped keep our walkers moving at our six metro walks.

Women Of Courage (clockwise from left) Shannon Ondracka, Maureen Manley, Cathy Poe and Mary Jinkerson.

Jennifer and Christian Sellers helped deliver MS literature to area libraries.

Thanks to our 60 Disney volunteers who helped with a Chapter mailing

Keith Schieler, Director of Sales for Anthem BCBS and Chapter President Phyllis Robsham

FREE BIKE MS TRAININGWhether you’re training for your first event or are a seasoned veteran, a training plan will help put more pizzazz in your pedaling.

Bike MS participants get a free TrainingPeaks account and a free training plan by Joe Friel, expert trainer and author of The Cyclist’s Training Bible. The plan includes: • Expert advice and daily instruction from Joe Friel • Maps and routes to view and share. or create your own • Nutrition tracking to monitor your diet and much more. Go to BikeMS.org and click on “Training” for more information and to sign up.

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TOLL FREE NUMBER 1 800 344 4867 | 15TOLL FREE NUMBER 1 800 344 4867 | 15

RESEARCH

STAY INFORMED ON CCSVI

There’s been a lot in the news lately about CCSVI, a blood flow drainage abnormality in the brain and spinal cord that some studies indicate may be linked to the damage wrought by MS.

The Society is pursuing this potential MS lead by undertaking the funding of new research in CCSVI (chronic cerebrospinal venous insufficiency) in MS and has invited investigators worldwide to apply for grants on the topic. We’re collaborating with the MS Society of Canada to convene an international panel of experts to conduct an accelerated review of proposals and working with our sister MS Societies around the world to assure that our research strategies are coordinated. New CCSVI research projects are expected to begin July 1, 2010.

Track the story

To stay up-to-date on the latest developments on CCSVI research, visit nationalMSsociety.org/CCSVI.

ORAL DRUGS MAKE PROGRESS• Oral drugs for MS are getting even closer to the doctor’s office, with one, Ampyra, now available by prescription.

Here’s the scoop:

• The FDA approved Ampyra (dalfampridine, Acorda Therapeutics) in January for its ability to improve walking in people with MS. People with MS and their healthcare providers can call 888-881-1918 for information on Ampyra, including patient assistance programs and insurance coverage. (The drug is costly: wholesale price is estimated to be $1,056 for a 30-day supply.) Watch Dr. Patricia Coyle talk about what Amypra does, how it works and possible side effects at nationalMSsociety.org/ampyra.

• Gilenia (formerly called FTY720 or fingolimod) in an exciting development has been granted a priority review by the FDA. This means it could take as little as six months to determine if this will become the first oral disease-modifying drug for MS. Read the studies thus far at nationalMSsociety.org/gilenia

• With positive results in the latest studies, Cladribine, another oral disease-modifying drug, is in the process of applying for marketing approval. Visit nationalMSsociety.org/news and type “cladribine” in the search field to learn more.

Get the latest news on oral drugs sent directly to your inbox. Visit nationalMSsociety.org/signup to create a user profile and start getting the MS eNEWS!

Society leaders meet with CCSVI researcher Dr. Paulo Zamboni (second from left) at a NYU briefing chaired by Dr. Joseph Herbert (second from right).

Mud Run is a 10K race with a series ofboot camp style obstacles that havebeen surrounded by mud.

100% of the fundraising contributionsand a portion of the race proceeds aredonated to the Gateway Area Chapterof the National Multiple Sclerosis Society.

Registration Fee:$50Fundraising Minimum:$100

Saturday, June 26

314.781.9020 www.gatewayMSsociety.org

NationalMultiple SclerosisSociety

BENEFITING THE NATIONAL MULTIPLE SCLEROSIS SOCIETY

GET DIRTY FOR MS!

SPONSORED BY

GET DIRTY FOR MS!BENEFITING THE NATIONAL MULTIPLE SCLEROSIS SOCIETY

SATURDAY, JUNE 26

Mud Run is a 10K race with a series of boot camp style obstacles that have been surrounded by mud.

100% of the fundraising contributions and a portion of the race proceeds are donated to the Gateway Area Chapter of the National MS Society.

Sign up or volunteer today! Registration fee: $50Fundraising Minimum: $100www.mudrunstl.com

SPONSORED BY:

TOLL FREE NUMBER 1 800 344 4867 | 17

RESEARCH

WHEN THE DIAGNOSIS IS PRIMARY PROGRESSIVECall 1-800-344-4867 for your free copy of Primary Progressive Multiple Sclerosis: What You Need to Know. In this 156-page-book, experts Dr. Jack G. Burks, Dr. Nancy J. Holland and Dr. Diana M. Schneider address symptom management, treatment options, rehabilitation, technology and adaptations, quality-of-life issues, care-partner resources and much more.

The book, jointly sponsored by the Society and the Multiple Sclerosis Association of America, comes with a companion DVD, featuring five

people who are living with primary-progressive MS. Their comments also appear throughout the book, grounding the advice in real-life situations.

The book and DVD were developed following recommendations from a Society task force on the needs of people affected by this type of MS. Publication and free copies to people with primary-progressive MS have been made possible by a generous educational grant from Genentech.

For more facts and strategies, visit our online webcast series at nationalMSsociety.org/ppmsweb.

MS CROSS WORD SEARCH ANSWER KEYE M K E S D N E I R F E L E T I R C G SC K E E P S M Y E L I N F M N E E N U NN I N O X M N E T A N O D W W I I T A OE S E E H K E X S M A N I O R N N T E YR C W B L L R D O I N T P P N P T T R EE D C I A A R A U E C S A A T D E A U GF C O N N W Y E A C I R L I N I R K B ON S N F I E A O T E A P E K C B S E S LO P N E O G L L G P L T L X I H H A R DC U E N R N H D K A A T E L E O I C E EE O C I S E E T I M S H G I O A P T K NL R T L I L F C O B S N C R N T S I A CE G I A W L N F C F I S A Y R S A O E IT S O O U A Y G I D S K E M A A P N P RA M N R N H P C N D T T E N T W Y I S CC K S I P C S E M V A S A M L A E R R LO L F M K A L H T N N E P R S L E T B EV A Q U A T I C S O C E K E S L E I A CD T O V O L U N T E E R S A L A E W R GA R E S E A R C H M S C H A M P I O N S

facebook.com/gatewaymssociety

myspace.com/nationalmssocietygateway

twitter.com/gatewayms

youtube.com/gatewaymssociety

Contact Us atNational MS SocietyGateway Area Chapter1867 Lackland Hill ParkwaySt. Louis, MO 63146314-781-9020 or 1-800-344-4867www.gatewaymssociety.org

MS Connection © 2010A quarterly newsletter published by the National Multiple Sclerosis Society, Gateway Area Chapter.

Chapter President • Phyllis RobshamNewsletter Editor • Joe Cavato

WritersJoe Cavato Laura Choate Kim Fitzsimmons Alex and Sam GandtDavid Kodner Kathi Taylor Karen Tripp Jonathan Reeder Tim Roccia

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.

Proud member of

(800) 344-4867 PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY

A LETTER FROM THE PRESIDENTPHYLLIS ROBSHAM

When I first started with the Gateway Area Chapter 17 years ago, I didn’t really have a connection with multiple sclerosis. When I interviewed with the Society and decided to accept a position here, I knew of only one person with MS. It’s hard for me to look back and realize just how unaware I really was.

I have grown to see this disease through new eyes, and work each day to increase awareness of MS everywhere I go, and in just about everyone I meet. I cannot begin to describe how much I have been affected by the thousands of people with MS and their families who I have known over the years.

Whether it has been through our programs and events, our volunteers and staff, our MS nursing wing known as “The Heights” in the Missouri or Illinois state capitols, in Washington D.C., or out in the community in general I have seen tremendous levels of commitment and dedication that continue to inspire me.

The good news is just how far we have come in the last 17 years. Diagnosis has been greatly improved by the use of magnetic resonance imaging (MRI); drug therapies have been developed that can slow disease progression; exercise therapies help to manage symptoms; awareness is growing; and vital research continues both nationally and locally, bringing exciting news.

I thank you for your inspiration and support through the years. We are not there yet, however. Continued research is vital. We need more education and awareness, quicker diagnosis, better treatments and ultimately, a cure for this disease. Please help us keep moving toward that day!

FROM THE PRESIDENT


There are more than 6,300 area residents, in 90 counties, living with multiple sclerosis who can benefit from the programs and services provided by the Gateway Area Chapter.

The Deliver a Smile program began a few years ago, and has touched the lives of more than a thousand of our friends, family, neighbors, and co-workers. The Chapter has successfully been able to match people living with MS with items they want or need.

Some of the past recipients have been affected and impacted more than others. Some of them are now home-bound or living in an extended care facility. This program provides them with another layer of support and contact with individuals who have a connection to MS. It’s a win-win for everyone involved!

The goal of Deliver A Smile is to search out those individuals who are in long-term care or are home-bound due to the progression of the disease, and have one of our caring volunteers Deliver A Smile to them!

What is this all about?During the months of July and December, Chapter staff and volunteers schedule and make friendly visits to home-bound individuals with MS. Participants bring a “little something” for the person living with MS. Staff and volunteers deliver personalized items that have been specifically requested by individuals.

How can YOU help?The Deliver A Smile program has three real needs.

First of all, the Chapter needs help identifying individuals who may benefit from this program.

Secondly, the Chapter needs financial support to purchase gifts for the program. Specifically, the Chapter needs gift cards to stores like Wal-Mart, Target and K-Mart. Cash donations are also gladly accepted.

Finally, we need help wrapping and delivering the gifts to someone in your immediate area. We need volunteers like YOU to help deliver the smiles!

What are we asking of you?If you would like to get involved and make a difference in the life of someone with MS through this program, please contact Diana Post, Program Associate with the Chapter. You can reach her at 1-800-344-4867, (314) 781-9020, option 2 or by email at [email protected].

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Thursday, August 126-8 p.m.

Tony’s Restaurant312 Piasa StreetAlton, IL 62002

Come meet with other people who have been newly diagnosed with MS in the past five years or who have recently moved to the area.

Staff members from the Chapter will be attending to let you know what we do and how we can help.

This program will feature a guest speaker, Dr. Christopher LaGanke, who will address the needs of people living with MS and their caregivers. A three-course dinner will be included with this free program. Space is limited so make your reservation today!

Registration Deadline: August 9

This program is sponsored by Bayer Healthcare.

New Connections New Connections Registration[ ] New Connections, Alton, IL Thursday, August 12

Name ____________________________

Address ___________________________

City/State/Zip _______________________

Home phone ________________________

Work phone ________________________

E-mail ____________________________

Date of diagnosis _____________________

Guests (please include age) _______________

Does anyone in your party use a mobility device? __

Does anyone in your party have any dietary restrictions?

________________________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440

To register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calen-dar” to choose the program you would like to attend.


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Thursday, September 237-9 p.m.

Sheraton Westport Hotel – Lakeside Chalet191 Westport Plaza, St. Louis, MO 63146 KEYNOTE SPEAKER:Dr. Mark FreedmanDirector – Multiple Sclerosis Research ClinicThe Ottawa Hospital, Division of NeurologyOttawa Ontario

LEARNING OBJECTIVES: • Learnaboutbonemarrowtransplantsandtheir

relationship to treatment of multiple sclerosis.• Learnwhystemcellresearchisimportanttopeople

living with MS.• Discoverwhatsomecommonmisconceptions

about stem cell research are.• Explainsomeofthedistinctionsbetweendifferent

types of stem cells.

Cost: $15 (fee waivers are available)Early Registration Discount: $12.50 (by August 27)Registration Deadline: September 17, 2010Call the Chapter about transportation options.You can also join via teleconference! A call-in number will be provided when you register. There is no fee for the teleconference.

John L. Trotter Research Program Are Bone Marrow Transplants the Answer?

John L. Trotter Research ProgramRegistration

[ ] John L. Trotter Program September 23, 2010 Name ____________________________ Address ___________________________ City/State/Zip _______________________Home phone ________________________Work phone ________________________E-mail ____________________________Would you like to join via teleconference? ______Do you use a mobility device? ______________Do you prefer a vegetarian meal? ___________ Payment Information ( ) Fee waiver requested( ) Check enclosed payable to MS Society( ) Visa ( ) MasterCard ( ) Discover ( ) Am. ExpressCard # ___________________________Expiration Date: ______________________

Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440


Program sponsored by Biogen, United Access and Wachovia.

Research MS Research MS Registration

[ ] Research MS, Edwardsville, IL August 28, 2010

[ ] Research MS, Sikeston, MO August 28, 2010

Name ____________________________

Address ___________________________

City/State/Zip _______________________

Home phone ________________________

Work phone ________________________

E-mail ____________________________

Do you use a mobility device? ______________

Do you prefer a vegetarian meal? ___________



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OBJECTIVES: MS specialists will provide up-to-date information on: • Researchandnewtherapies• Newdataondiseasemodifying

medication for MS

RESEARCH MS – EDWARDSVILLE, ILSaturday, August 2811 a.m. - 1 p.m. Sunset Hills Country Club2525 Hwy 157 SouthEdwardsville, IL 62025SPEAKER:Dr. Gregory WuAssistant Professor of Neurology, Division of MS, Washington University in St. Louis

RESEARCH MS – SIKESTON, MOSaturday, August 2810 a.m. - NoonLocation, TBDSPEAKER: Dr. Barry SingerNeurologist at Missouri Baptist Medical CenterDirector of The MS Center for Innovations in Care Program sponsored by Biogen Idec, EMD Serono,

Teva Neuroscience Access and Wachovia.


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Saturday, June 193-7 p.m.

Stephens Lake ParkRiechmann Pavilion2300 E. WalnutColumbia, MO 65201

Family Evening-Columbia, MO is a great way to meet other people living with MS. Join us for an evening of fun, food, family and friends. The program will take place at an air- conditioned, indoor pavilion located with easy access to Stephens Lake.

Activities include:g Arts and crafts areag Face paintingg Raffle prizesg Barbequeg Dessert potluckg Games and other outdoor activities

Cost: FREE PROGRAM

Fee waivers are available for transportation to this program.

Family Evening Columbia, MO

Family Evening Registration

[ ] Stephens Lake Park, Columbia, MO Saturday, June 19

Name ____________________________ Address ___________________________ City/State/Zip _______________________Home phone ________________________Work phone ________________________E-mail ____________________________Do you use a mobility device? ______________Do you prefer a vegetarian meal? ___________Please list guest’s names and ages: __________________________________________



Program sponsored by Boeing and United Access.

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Strategies for Occupational and Physical TherapistsSaturday, September 258 a.m. to 5 p.m. Sunday, September 269 a.m. to Noon Hilton Garden Inn, 360 Regency Park Drive, O’Fallon IL, 62269Registration fee is $100 per person or $75 per person before August 25, 2010. Student fee: $30 Registration Deadline: September 20, 2010Instructors: Elissa Held Bradford, MPT: Physical Therapist, St. John’s Sports and Therapy, West County MS Center, St. Louis, MO Marcia Finlayson, PhD, OT(C), OTR/L: Assistant Professor, Department of Occupational Therapy, University of Illinois at Chicago Mary Kay Fink, MSN, RN, MSCN, APN, ACNS-BC, West County MS Center, St. Louis, MOObjectives•Discuss MS course classification, treatment strategies and the unique challenges of working with patients with MS.•Identify and apply appropriate rehabilitation assessment tools and methods.•Develop realistic rehabilitation goals for patients presenting with a wide range of functional problems.•Implement appropriate rehabilitation interventions including exercise programs, assistive devices and adaptive strategies.•Refer healthcare professionals and people with MS to community-based resources and relevant publications.

Rehabilitation in MS: Strategies for Occupational and Physical TherapistsRegistration[ ] Rehabilitation in MS: Strategies for Occupational and Physical Therapists September 25-26Name ______________________________Address _____________________________City/State/Zip _________________________Home phone __________________________Work phone __________________________E-mail ______________________________Do you prefer a vegetarian meal? ______________Profession: q OT q PT q COTA q PTA q STUDENT

Payment Information ( ) Check enclosed payable to MS Society( ) Visa ( ) MasterCard ( ) Discover ( ) Am. ExpressCard # ___________________________Expiration Date: ______________________


To register online go to www.gatewaymssoci-ety.org, click “Programs & Services” then select “Program Calendar” to choose the program you would like to attend.

Accreditation Information: This course is being reviewed for continuing education hours for occupational and physical therapy practitioners by an approved provider.

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Friday, August 6, 9 a.m. – 5:30 p.m.

Delmar Gardens, Garden Villas Retirement Community, 13590 S. Outer 40 Rd., Town & Country, MO 63017

Registration fee is $75 per person or $50 per person before July 9, 2010. Student fee: $30

Dr. Kris Herfkens, PhDTriangle Neuropsychology Services, PLLC, Durham, NC

Mary DuParri, LPC, Private Practice , St. Louis, MO

Program Topics• Multiple Sclerosis: What You Need to Know About the Disease• “Trying-on” Symptoms of MS• Adapting to Life with Multiple Sclerosis: Emotional

Challenges and Coping Strategies• Cognitive Dysfunction in MS• Case Vignette Presentations and Discussion• Multiple Sclerosis and Intimacy• Parenting: Choices and Challenges• Professional Challenges

Objectives• Describe the physical, emotional, and cognitive impact of

MS on individuals and their families.• Recognize and address unique clinical challenges to

working with clients with a chronic, disabling illness.• Identify client needs and facilitate efforts to adapt and

problem-solve.

Psychosocial Intervention In Multiple Sclerosis:Strategies for Mental Health Professionals

Strategies for Mental Health Professionals Registration[ ] Town & Country, MO, August 6, 2010Name ____________________________Guest name ________________________Address __________________________City/State/Zip _______________________Home phone ________________________Work phone ________________________E-mail ____________________________Do you prefer to receive your confirmation via mail or e-mail? ____________________Profession: q LPC q PSYCHOLOGIST q LCSW q OTHER _____________________Payment Information( ) Fee waiver requested( ) Check enclosed payable to MS Society( ) Visa ( ) MasterCard ( ) Discover ( ) Am. ExpressCard # ___________________________Expiration Date: ______________________Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440To register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the program you would like to attend.Accreditation Information: Psychologists: The University of South Florida College of Medicine is ap-proved by the American Psychological Association to offer continuing educa-tion for psychologists for 6.5 hours of continuing education credit. Social Workers, Professional Counselors, and Marriage and Family Thera-pists The University of Texas at Arlington School of Social Work Professional Development Program is an approved provider of continuing education for social workers, licensed professional counselors, and licensed marriage and family therapists for 6.5 hours of continuing education credit.

TALK MS GROUPSMISSOURI

Cape Girardeau 3rd Saturday, 10 am

St. Francis Health & Wellness Center Healing Arts Building, Conference Room 150 S. Auburn, Cape Girardeau, MO 63703

Sharon (573) 332-8148

Columbia Call for DatesUniversity of Missouri-ColumbiaQuarterdeck Bldg., Rm. 1182401 Lemone Ind. Dr., Columbia, MO 65201

Deanna (573) 882-6767

Crystal City/Festus 2nd Tuesday, 1 pm

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

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

Fulton Call for Dates Callaway Community Hospital 10 South Hospital Drive, Fulton, MO 65251 Diana (573) 642-9234

Jefferson City 1st Monday 6 pm

St. Mary’s Health Center, Assembly HallSt. Mary’s Medical Plaza, off of West Dunklin Jefferson City, MO 65101

Chris (573) 645-0130 [email protected]

New London 2nd Monday, 7 pm Call for Location Debby (573) 267-3365

[email protected]

Poplar Bluff 2nd Sunday, 2 pm

First Christian Church 1601 North Main, Poplar Bluff, MO 63091

Tamra (573) 568-3912 [email protected]

St. Charles 3rd Sunday, 3pm

Hardee’s Restaurant at Mid Rivers Mall Dr. and Mexico Rd. Jim (636) 940-1521

Washington TBA

West Plains 3rd Wednesday, 5 pm

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

Charline (417) 469-1068 Sally (417) 469-4842

ST. LOUIS METRO

Affton 1st Thursday, 7pm

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

Mid-St. Louis County 2nd Saturday 1:30pm

St. John Rehab Hospital, 14561 North Outer Hwy 40, St. Louis, MO 63017 Kevin (314) 841-3755

West County 2nd Tuesday, 7 pm

Living Word United Methodist Church17315 Manchester Rd., Wildwood, MO 63038 Walt (636) 256-9171

Perspectives on MS Networking Group (mid-30’s & under)

1st Saturday, 10 am

NMSS Office Gateway Area Chapter 1867 Lackland Hill Pkwy, St. Louis, MO 63146

Mary (314) 542-9303 [email protected] Michelle (636) 447-5407

ILLINOIS

Alton/Wood River3rd Tuesday of each month 7pm-9pm

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

Belleville/ O’Fallon 2nd Sunday, 2:30pm

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

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Granite City Call for Dates Gateway Regional Medical Ctr, Pascal Hall 2100 Madison Ave, Granite City, IL 62040 Beth (618) 447-5456

Litchfield 4th Tuesday, 6:30 pm

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

Susan (217) 324-7106 [email protected] Ruth (217) 999-8924 [email protected]

Metro East June 23, 7 pmAug. 25, 7 pm

LINC, Inc. 120 East A Street, Belleville, IL 62220

Diane (618) 235-8823 [email protected]

Mt. Vernon Call for Dates Faith Lutheran Church 1104 N. 42nd St. Mt. Vernon, IL 62864 Terri (618) 242-8448

Southern Illinois 2nd Tuesday, 5pm

Heartland Regional-Medical Center Classroom #23333 West DeYoung, Marion, IL 62959

Robert (618) 983-0321 Lisa (618) 983-0443

SPECIALIZED GROUPS

Men’s Chat Last Tuesday of the month, 7 pm Telephone group Joe S. [email protected]

MS Fun, Friends & Food Sept. 76pm

David C. Pratt Cancer CenterSt. John’s Mercy Medical Center607 S. New Ballas Rd., St. Louis, MO 63147

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

Veterans with MS 2nd Wednesday, 10 am

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

Penny or Patti (314) 652-4100 ext. 4523 [email protected]

CarePartner and Family Group

3rd Wednesday, 7 pm

NMSS Office Gateway Area Chapter1867 Lackland Hill Parkway, St. Louis, MO 63146 Allison (800) 344-4867

[email protected]

The Alton, IL Talk MS group is hosting an open house on Tuesday, September 21 and you are invited! If you are a current member, or have been interested in learning more about Talk MS groups, this is an exciting opportunity to see first hand how Talk MS is moving forward. Chapter staff will be attending to let you know about Chapter events, volunteer opportunities, programs and services. There is no fee to attend but you must register, so RSVP today at 1-800-344-4867. Feel free to tell a friend or bring a guest.

It will take place at the Alton Talk MS group’s regular meeting place at the United Presbyterian Church, 2550 Rock Hill Rd., Wood River, IL, 62095

Talk MS Group Open House The National MS Society-Indiana State Chapter has recently added two new groups in Evansville. If you live in Eastern Illinois, please consider attending a future meeting.

Evansville, IN – 2nd Thursday, 6 p.m.Evansville Service Center, Conference Room, 815 John Street, Alice Burns (812) 602-4158

Evansville, IN Caregiver Group – 2nd Tuesday 6:30 p.m.Evansville Service Center, Conference Room, 815 John Street, Fred Frayser (812) 499-4147

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Group needs new leader. Contact Allison at (800-344-4867) or [email protected]

DIVE IN!Everyone can participate in an aquatics class. You don’t need to know how to swim – you just need the desire to improve yourself, have fun, and make friends.

Why aquatics?g The buoyancy of the water

reduces your body weight, meaning less stress on joints!

g Better cardiovascular fitness is gained using the resistance of the water!

g Water keeps you cool and guards against fatigue, so you can exercise longer!

Limited fee waivers for MS Aquatics programs are available. Please call 1-800-344-4867 for more information.

MS Aquatics

ST. LOUIS METRO AREABridgeton Community Center Contact: Cole (314) 739-5599

Carondelet Park Rec Plex Contact: Shannon (314) 768-9622

Center of Clayton Contact: Diane (314) 353-4960

Chesterfield JCCContact: Sheena Koster (314) 442-3495

Emerson Family YMCA (North County)Contact: Georgia/Chris (314) 521-1822

Hazelwood Community CenterContact: Jill A. (314) 731-0980

Jefferson College (Hillsboro)Contact: Christina C. (636) 942-3000 x382

Mid-County YMCA (Brentwood)Contact: Sandi (314) 962-9450

Show Me AquaticsContact: Carolyn (636) 896-0999

South City Family YMCA Contact: Rich (314) 644-3100

St. Charles County YMCAContact: Joyce (636) 928-1928 x250

The Pointe at Ballwin CommonsContact: Leslie or Adam (636) 227-8950

Washington Four Rivers Family YMCAContact: Ann (636) 239-5704

Wellbridge Athletic Club –( Clayton) Contact: Trudy C. (314) 746-1500 x1551

Wellbridge Athletic Club – (Town & Country)Contact: Abby (636) 207-3000

MID MISSOURIColumbia Activity & Recreation CenterContact: Janel (573) 874-7460 x7700

Jefferson City YMCAContact: Erica Hart (573) 761-9021

Mexico Family YMCA Contact: Consuelo (573) 581-1540

SOUTHERN AND METRO ILLINOISJohn A. Logan College Contact: Chris G. (618) 985-2828 x8504

Jerseyville Wellness CenterContact: Jennifer R. (618) 498-3500

O’Fallon Community YMCAContact: (618) 628-7701

SOUTHEAST MISSOURIBlack River ColiseumContact: Mandi E. (573) 686-8009

Cape Girardeau Municipal PoolContact: Pat Grebe (573) 335-4040

Therapeutic recreation programs brought to you in part by unrestricted educational grants from Anthem Blue Cross/Blue Shield and Wellpoint.

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The Chapter offers scholarships for attendance and transportation to the therapeutic recreation programs.

Yoga SitesST. LOUIS:Olivette Community Center9723 Grandview Drive St. Louis, MO 63132Cost: $10/ classCall: (314) 781-9020 or 1-800-344-4867Wednesdays 10 - 11:30 a.m. (Iyengar Yoga Class)Instructor: Kathy Simon

Yoga St. LouisIyengar Yoga Class3305 Jamieson Ave.St. Louis MO 63139Tuesdays, 4:30 – 6 p.m. (Gentle Yoga Class) Call: Kimberly 1-800-344-4867, Opt. 2

St. John’s Mercy Medical Building (South County near I-270 & Tesson Ferry Rd.)12348 Old Tesson Rd. , St. Louis MOInstructor: Linda Whitney (314) 729-0181Tuesdays June 22 - August 105:30-6:30 p.m. (Beginner)7-8 p.m. (Gentle)

Thursdays June 24 - August 129:30-10:30 a.m. (Beginner)

Cost: $54 for 6 weeks and $72 for 8 weeks.

MID MISSOURIElm Street Yoga904 Elm St, Suite 210, Columbia, MO 65201www.elmstreetyoga.com

CALL FOR CLASS TIMES Instructor: Linda LutzCost: $35 for 5 classesClass size limited to six peopleContact: Linda (573) 441-8566 or [email protected]

METRO EAST AND SOUTHERN ILLINOISSukha Yoga Center18 South High St., Belleville, ILInstructor: Sarah FraserCost: call for class times/feesContact: Sarah (618) 236-9642Web site: www.sukhayogacenter.com

One-O-One Yoga101 South GrahamCarbondale, ILContact: Sarah Miller, 618-457-8186Cost: Call for class times/feesWeb site: www.center101yoga.com

SOUTHEAST MISSOURI PARC Fitness Center2620 N. Westwood Blvd Poplar Bluff, MO 63901 Phone: 573-686-5985Mondays, 7 - 7:45 p.m.Wednesdays, 6 - 7:30 p.m. (slower paced class)Walk-ins welcome!Instructor: Mindy Matthews

Yoga at the Firm1610 Freedom Dr.West Plains, MO 65775Instructor: Vicki HoganContact: Vicki (417) 293-1184 or the Firm at (417) 257-7800Cost: $40 for an 8-week session


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Your Yoga for Your MS

Adapting Yoga to All Ability LevelsMS yoga instructors have additional knowledge of MS and its symptoms. Instructors modify postures to your ability level using different props such as blankets, chairs, straps or blocks which helps eliminate stress on the joints and make postures more comfortable and safe.

For people with MS it can provide the following benefits:g Chronic pain relief g Diminishes fatigue g Relieves depression and anxietyg Improves spasticityg Helps overcome stiffnessg Increases oxygen in the bloodg Promotes relaxation

and sound sleepingg Encourages living in the momentg Provides a fun way to exercise

and meet new friends

The Chapter offers scholarships for attendance and transportation to the therapeutic recreation programs.

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The Wellness Network connects people who have an interest in or who are actively participating in exercise programs through a monthly teleconference. These are similar to the Chapter “Talk MS” groups but each call will focus on a different topic relating to wellness. Upcoming topics include:•June24,Nutrition•July29,ExerciseEquipment•August26,StayingActiveinWarmWeather•September30,WeightManagement

Participating in monthly calls is an opportunity to share ideas and provide encouragement and support to each other on challenges and successes one experiences while seeking and actively participating in exercise programs.

The teleconferences are facilitated by Toni Kodner, a volunteer with extensive knowledge of MS and wellness and are from 7-8 p.m. Each month a guest speaker will also share expertise on a specific topic.

The Wellness Network is free and provides resources to a wide variety of people with MS of all abilities. It is also helpful to those who are new to seeking out wellness opportunities and need some guidance and direction.

If you are interested in becoming a member of the Wellness Network, please call 1-800-344-4867 or go to gatewaymssociety.org to register for the monthly calls.

Getting to know the facilitator, Toni Kodner:Toni Kodner has been living with MS for over 20 years. She is very physically active and currently takes yoga classes two days per week and is dedicated to her own home exercise program. She volunteers weekly at the Chapter as a therapeutic exercise volunteer.

Wellness Network Wellness Network RegistrationPlease mark the sessions in which you would like to participate:

[ ] June 24, Nutrition[ ] July 29, Exercise Equipment[ ] August 26, Staying Active in Warm Weather[ ] September 30, Weight Management

Name ____________________________

Address ___________________________

City/State/Zip _______________________

Home phone ________________________

Work phone ________________________

E-mail ____________________________


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Program sponsored by Anthem Blue Cross/Blue Shield and Wellpoint.


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Mark your calendars on every second Monday of the month for the Midwest Teleconference Series. The series topics from June through September are:Coping with Change Speaker: Dr. Jeri MorrisLicensed Clinical Neuropsychologist, Assistant Professor, Northwestern UniversityDate/Time: June 14, 2010, 7-8 p.m. Objectives: Increase knowledge of coping techniques for people living with primary progressive, secondary progressive and relapsing-remitting MS.

Bowel Dysfunction and MSSpeaker: Dr. Joel M. WittlesAssociate Professor of Clinical Medicine, Department of Medicine, Division of Gastroenterology, Indiana University School of MedicineDate/Time: July 12, 2010, 7-8 p.m. Objectives: Increase knowledge of symptoms and treatment of bowel issues.

Progressive MS Speaker: Dorothy E. Northrop, MSW, ACSWVice President of Research & Clinical Operations, National MS Society Date/Time: August 9, 2010, 7-8 p.m. Objectives: Increase knowledge of progressive MS, symptom management and coping strategies.

Navigating the SSDI Process Date/Time: September 13, 2010, 7-8 p.m. Speakers: Yvonne Ernsen, Attorney Specializing in Disability Claims; Erica Kiehnoff, NMSS social worker;Nicole Nielsen, Disability Examiner, Social Security AdministrationObjectives: Increase knowledge of tools and information needed to navigate the SSDI application and appeal process.

Midwest Teleconference Series

Teleconference RegistrationPlease mark the sessions in which you would like to participate:

[ ] Coping with Change June 14, 2010, 7-8 p.m.

[ ] Bowel Dysfunction and MS July 12, 2010, 7-8 p.m.

[ ] Progressive MS August 9, 2010, 7-8 p.m.

[ ] Navigating the SSDI Process September 13, 2010, 7-8 p.m.

Name ____________________________ Address ___________________________ City/State/Zip _______________________Home phone ________________________Work phone ________________________E-mail ____________________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440

To register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the program you would like to attend.

Program sponsored by Biogen Idec and Wachovia.

Saturday, June 26 to Sunday, June 27Hilton Garden Inn in Chesterfield16631 Chesterfield Grove Rd.Chesterfield, MO 63005

Having a satisfactory and fulfilling relationship is hard work even in the best of times. MS can make it even more difficult. In this workshop you are able to explore ways to develop a team approach to living well with MS.

This interactive and energetic workshop will focus on how to: g Improve communication and resolve

conflicts g Have greater fulfillment in your relationship g Manage MS as a teamg Help your relationship thrive

When you know how to take charge as a couple, MS doesn’t have to rule your relationship.

Overnight lodging and meals are included with your registration.Cost: $40 per couple Register by Monday, June 21 by contacting 1-800-344-4867 or [email protected] waivers for this program and/or transportation are available.

Can’t make the program? You can also attend via an interactive teleconference series.

9 Hours to a Lifetime of Relationship Satisfaction Teleconference Series

Begins Tuesday, July 27, 2010 at 8 p.m.6 week series all calls run from 8-9:30 p.m. •July27,2010 •August3,2010 •August10,2010 •August17,2010 •August24,2010 •August31,2010

FREE PROGRAM!

Relationship Enrichment Course: 2 Days to a Lifetime of Relationship Satisfaction

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Resource Center

The hot days of are here! As the temperatures throughout Missouri and Illinois rise, so can the symptoms for some people living with MS. Overheating can cause what is called a pseudoexacerbation or a temporary aggravation of MS symptoms that have occurred before. Once the body cools to a normal temperature, the aggravated symptoms will subside. There are a variety of ways for people with MS to stay cool and avoid the onset of a pseudoexacerbation. Here are just a few ways to keep your cool:

g Stay hydrated by drinking plenty of ice water

g Wear lightweight, loose, breathable clothing

g Stay in air conditioning as often as possible, especially from noon – 5 p.m., the hottest part of the day

g Do your exercise routines in an air conditioned environment and use a fan, or try exercising in a pool with water at 85°F or below

g Wear cooling garments like neck wraps, vests or hats with built-in cooling devices

g Take a cool and refreshing shower or bath

Keep in mind that purchasing an air-conditioner can be tax deductible with proper documentation from your doctor. If do not currently have an air conditioner the National MS Society may be able to help. For more information call our Information Resource Center at (800) 344-4867, option 1.


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MARKETPLACEHOUSE FOR SALE4-bedroom, 3.5 bath 2-story home in Ches-terfield. Master bedroom and bath are on the main level. Master shower is accessible. Home is equipped with an elevator. Located in Chesterfield, MO. Please call Fareesa at 636-675-3107.

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EAT LESS AND PROSPERBY AL TAINSKY

Were I to eat anything I wanted I would be as big as a house. This doesn’t auger well for a person who never rises from his chair. Were I to gain weight my backside might be riddled with pressure sores. Without aerobic exercise calories are not burned up. A wheelchair user like me needs fewer calories to thrive.

Will is at the crux of what I propose. It is a daily exercise of will. Watching what I eat is entertaining. Am I not the master of my own universe?

A healthy lifestyle can be had counting your calories every day. Fresh fruit and vegetables are both low calorie and filling. Eat a ¼ cup of vanilla yogurt and a ¼ cup of granola for breakfast. Or eat a ½ cup of yogurt and save calories for

your dinner allotment. The permutations are endless. Want half and half in your morning coffee? Add calories to your daily allotment and subtract elsewhere.

Need to snack in the afternoon? I eat six peanuts savoring each nut individually. When dinner time comes I chow down with gusto. I have a surplus of calories to use any which way I like.

Less really is more. Less food can mean more vitality, mental sharpness, physical comfort and appealing appearance.

A large salad dressed with olive oil and balsamic vinegar is the centerpiece of a healthy low-calorie dinner. Want a sprinkling of croutons? Add a few calories (check the nutrition facts label on the package to see exactly how many).

A tart green apple is approximately 80 calories. Pair it with four or five slices of sharp cheddar and you’ve got dessert. Or end dinner with four or five slices of brie coupled with a sliced pear. A dessert fit for royalty!

White rice and potatoes will

constipate you. Eat buckwheat groats instead. Cooked in water they taste like sawdust. Cooked in low-fat chicken broth they are a tasty side dish.

Count your calories. It works. A leaner, healthier, life-affirming you can result—even in a wheelchair. I’ll be celebrating my 100th birthday in 41 years. Stay hungry. Stay sharp. Stay alive.

WHAT MIGHT WORK FOR YOU?

In general, a quadriplegic person needs 10.3 calories per pound per day to maintain their body weight – and an ideal weight is 10-15% less than the weight listed on standard height and weight charts. Al’s advice about counting calories is excellent. We’d also suggest consulting a nutritionist for help selecting foods with sufficient fiber and nutrients and strong personal appeal.

-Nancy Reitman, RN, National MS Society Professional Resource Center

JUNE 20104-6 Challenge Walk MS,

St. Charles County, MO12 Night at The Ballpark, Marion, IL14 Midwest Teleconference Series19 Family Evening, Columbia, MO24 Wellness Network26 MS Mud Run, Harrah’s St. Louis26-27 Relationship Enrichment Course,

Chesterfield, MO

The Chapter’s inaugural Mud Run will be June 26 at Harrah’s St. Louis. For more information on participation or to volunteer go to www.mudrunstl.com.

JULY 201012 Midwest Teleconference Series29 Wellness Network

AUGUST 20106 Psychosocial Intervention in MS:

Strategies for Mental Health Professionals, St. Louis, MO

9 Midwest Teleconference Series12 New Connections Social

Gathering, Alton, IL21 Walk MS – O’Fallon, IL21 Pediatric MS Dinner Program26 Wellness Network28 Research MS – Edwardsville, IL;

Sikeston, MO

SEPTEMBER 201011-12 Bike MS: Express Scripts

Gateway Getaway Ride 201013 Midwest Teleconference Series18 Walk MS – Washington, MO23 John L. Trotter Research

Program, St. Louis, MO25 Walk MS – Dexter, MO; Mt.

Vernon, IL25-26 Rehabilitation in MS: Strategies

for Occupational and Physical Therapists, O’Fallon, IL

26 Walk MS – Ste. Genevieve, MO30 Wellness Network

Chapter Calendar SAVE THE DATES!

Family Weekend-Touch of NatureBe sure to save the dates for Family Weekend-Touch of Nature October 15-17, 2010. The colors of fall will welcome you and your guests to a relaxing and rustic family getaway. Located approximately 2-1/2 hours from St. Louis, just outside of Carbondale, IL., Touch of Nature offers a secluded and accessible retreat from life’s pressures. Weekend activities include:


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BENEFITING THE NATIONAL MULTIPLE SCLEROSIS SOCIETY

Jumpstart Your RelationshipThis weekend getaway for couples will be at the Lake of the Ozarks, MO the weekend of October 23-24. Go to gatewaymssociety.org for more details.

•Accessible pontoon boat rides•Arts & Crafts •Campfire and s’mores•Accessible horseback

and pony rides

•Nature hikes and owl prowling•Activities and

group sessions for CarePartners•Accessible hayrides

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Permit No. 3914St. Louis, MO

Gateway Area Chapter1867 Lackland Hill ParkwaySt. Louis, MO 63146

Gateway Area Chapter1867 Lackland Hill ParkwaySt. Louis, MO 63146


happeningsmaking the most of life and the least of MS

NationalMultiple SclerosisSociety

In this issueDeliver a Smile . . . . . . . . . . . . . . . . . . 19New Connections . . . . . . . . . . . . . . . 20John L . Trotter Research Program . . . 21Research MS . . . . . . . . . . . . . . . . . . . . 22Family Evening Columbia, MO . . . . . 23Professional Education . . . . . . . . . 24-25Talk MS Groups . . . . . . . . . . . . . . 26-27Therapeutic Recreation . . . . . . . . 28-29Wellness Network . . . . . . . . . . . . . . . 30Midwest Teleconference Series . . . . 31Relationship Enrichment Course . . . 32Resource Center . . . . . . . . . . . . . . . . . 33Living With MS . . . . . . . . . . . . . . . . . 34Chapter Calendar . . . . . . . . . . . . . . . . 35

Your Source for Knowledge, Wellness, and Support Summer 2010

Summer has arrived and the Chapter has something for you.

Get connected with others living with MS through our New Connections program (pg. 20) or by attending a Talk MS Group (pgs. 26-27).

Learn about the latest in MS research by attending a Research MS program (pg. 22) or the John L. Trotter Program (pg. 21) in September.

Get active with a Therapeutic Recreation program (pgs. 28-29) or through the Wellness Network (pg 30).

The Chapter is also offering a new program - the Relationship Enrichment Course (pg. 32).

The Chapter is also gearing up for the Bike MS: Express Scripts Gateway Getaway Ride 2010 September 11-12.

Let us know if you’d like to participate as a cyclist, volunteer or a Bike MS Champion. There is something for everyone at Bike MS. Go to www.gatewaymsbikeride.org.

Documents

MS Connection | Summer 2010