MOVING TOWARD A WORLD FREE OF MS | SUMMER • 2010
GATEWAY AREA CHAPTER
This is Why I Ride
Advocating for MS PAGE 5
Ask the Professional PAGE 10
INSIDE THIS ISSUE ON THE COVER
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.
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Features
From the Board PAGE 11
E C N E R E F N O C E L E T A C O V D A
M K I S C D C S P U O R G S M K L A T R
K E N E W C O N N E C T I O N S F Q O E
E E O E B I N F E N I L A O R I M U V S
S P X H L A N I O R S I W U N P K A O E
D S M K L A W E G N E L L A H C A T L A
N M N E R R Y A L H E F N Y P S L I U R
E Y E X D A E O L D T C F G C E H C N C
I E T S O U A T G K I O C I N M T S T H
R L A M I E C E P A M B F D D V N O E M
WORD SEARCH
F I N A N C I A L A S S I S T A N C E S
E N O N T S R P T T H N S K T S E E R C
MS Brain Games PAGE 13
L F D I P A L E L E G C A E E A P K S H
E M W O P A I K X L I R Y M N M R E A A
T N W R N T N C I E O N R A T L S S L M
In Every Issue
THIS IS WHY I RIDE | 3
VOLUNTEER COLUMNS | 8-9
Bike MS, wife inspire veteran cyclist to keep pedaling
Parents inspire these volunteers to JOIN THE MOVEMENT ASK THE PROFESSIONAL | 10
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
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
SUMMER SWIZZLE | 6 Unique fundraising event is just around the corner
Exercise your mind with an MS word search CHAPTER NEWS BRIEFS | 14 Read about what’s going on in the Chapter
THIS IS WHY I DONATE | 7
RESEARCH | 15
Golden Circle members take on MS day by day
Updates on the progress of oral drugs and information about CCSVI FROM THE PRESIDENT | 18
GET DIRTY FOR MS | 16 The Chapter’s inaugural Mud Run lets participants get down and dirty, while raising money
JOIN THE MOVEMENT: nationalMSsociety.org
A letter from Chapter President Phyllis Robsham HAPPENINGS | 19-36 Upcoming Chapter programs and services
I E I N P D I B H O A T S A W A L L A P
R E I N T E R S H I P S A P Y E E E E I
C N T T T A K E A C T I O N I R T I W O
G U A E R U B S R E K A E P S R B A R N
S N O Y E G O L D E N C I R C L E C G S
T N W R N T N C
E O N R A T
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I E I N P D I B H O A T S A W A L L A P
R E I N T E R S H I P S A P Y E E E E I
C N T T T A K E A C T I O N I R T I W O
G U A E R U B S R E K A E P S R B A R N
S N O Y E G O L D E N C I R C L E C G S
EVENTS
WHY WE RIDE – BIKE MS INSPIRES PARTICIPANT Bud 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.”
was going to be faced with this she by people’s generosity during his wanted to be as proactive as she fundraising campaigns. could.” “Some of the responses I’ve gotten Bud, an avid runner, joined the have completely surprised me,” movement in helping create a Bud said. “My aunt who I am world free of MS about six years not really that close with sent in ago. Bud and Cindi donated to a really nice check and an even one of Bud’s running buddies who nicer letter. A woman at my wife’s participated in Bike MS. work, who she hardly knew, wrote a check for $200. It’s the surprise “Afterwards he sent a really responses that keep you going.” touching letter and a Bike MS Champion bandana to us,” Bud Since 2005, Bud has raised more said. “I looked at my wife and than $30,000 to help create a said ‘if anyone is going to ride world free of MS. He rides not for you next year it’s going to be only for his wife, but for everyone me.’ That’s when I started to get he has met whose lives are affected involved.” by MS. 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 Cindi’s initial neurologist didn’t and some aren’t. Some make an calm their fears. athletic event out of it and I prefer to putz along and meet as many “It was an odd experience with people as I can. To hear stories her first neurologist because he from other people who have MS encouraged us to keep it quiet or who have a family member who with insurance and said there were no real treatments,” Bud said. has MS is really inspiring.” “My wife made up her mind to get As the husband of someone with a new doctor. She thought if she MS, Bud has also been touched
“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
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Gateway Area Chapter scholarship winner Shannon Walker learned many valuable lessons from her father Jim Walker.
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 4
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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,”
JOIN THE MOVEMENT: nationalMSsociety.org
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.”
CALL TO ACTION Studies show that early and ongoing treatment with an FDAapproved 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 1-800344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.
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
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. 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.”
TOLL FREE NUMBER 1 800 344 4867
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EVENTS
TEAM GILLISPIE HOPES TO GET CLOSER TO ONE MILLION RAISED MARK WITH SUMMER SWIZZLE 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 cuttingedge research and funding necessary programs, as we try, together, to eradicated this destructive disease known as MS.
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JOIN THE MOVEMENT: nationalMSsociety.org
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
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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.
Kim, Diagnosed in 1986
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.”
FOR MORE ABOUT THE GOLDEN CIRCLE
Contact Beth Bauer Director of Individual Giving at beth.bauer@gatewaymssociety.org or 314-446-4177. TOLL FREE NUMBER 1 800 344 4867
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THROUGH THE EYES
VOLUNTEER
a cure for MS has crossed my mind, I chose the more practical road of supporting my local chapter of the National MS Society.
JONATHAN REEDER YOUNG PROFESSIONALS VOLUNTEER, BIKE MS PARTICIPANT
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 8
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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 200mile 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
JOIN THE MOVEMENT: nationalMSsociety.org
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.
OF VOLUNTEERS
VOLUNTEER DONOR
ALEX AND SAM GANDT ADMINISTRATIVE 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
Inspired by their mother Eileen (right), Sam (middle) and Alex (right) Gandt volunteer in the office for the Chapter. 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.
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.
TOLL FREE NUMBER 1 800 344 4867
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MS CONNECTION
ASK THE PROFESSIONAL PATIENT QUESTION: How Can You Prevent a Caregiver from Becoming Overwhelmed?
Carole, diagnosed in 2005
Karen Tripp Marriage and Family Therapist BEING 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. 10
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JOIN THE MOVEMENT: nationalMSsociety.org
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.
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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.
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BOARD OF TRUSTEES
FROM THE BOARD DAVID KODNER
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.
David Kodner and his wife Michelle at Walk MS in Clayton on April 11
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 My entire family began the Move luncheon and other participating in Walk MS. It was fundraisers. amazing to see the thousands of people, some directly affected, Thanks to Lynda Baris, Board Chair, I was offered the some family members, and opportunity to have much some with friends who have MS, dedicate their time, energy more involvement by joining the board of trustees last year. I and money to helping those in can honestly say this past year need. It made me realize there has been more fulfilling than was so much more I could do any time in my life. I have been to help. I was then recruited so inspired by the dedicated as a Corporate Achiever for and hard-working staff of the Chapter. That led me to the Chapter. Every member meet Dr. Barbara Green, and of the staff I have met is truly really starting to understand CONT’D ON NEXT PAGE my mother’s challenges, and TOLL FREE NUMBER 1 800 344 4867
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GETTING TO KNOW US
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
The Chapter’s Finance and Administration Department includes (from left): Lisa Klaus, Sandra Putney, Karen Dolan, Laura Choate, Teshia Cross and Janice Bradford
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.
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dedicated to the cause, and they work tirelessly to provide people living with MS and their families the finest support imaginable.
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 The members of the board are an incredibly think about the pain that she never admits to, active group of individuals who dedicate so much her unwillingness to give in or give up, and her of their time and resources to all aspects of life dedication to helping others with MS, it makes with MS. They serve as a constant inspiration to any problem in my personal life or business seem me of how much can really be done in the pursuit not only insignificant, but solvable. I wish for of a cure, the exploration of new therapies, and a world without MS, but until that time, I am the raising of funds to support those with MS. grateful to know so many just like my mother and the great effect they have on all of those around The theme of this issue of the MS Connection them. is “I don’t have MS, but it affects me.” When I 12
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JOIN THE MOVEMENT: nationalMSsociety.org
MS WORD SEARCH PUZZLE
MS BRAIN GAMES
These words and their meaning can be found at gatewaymssociety.org
E C N E R E F N O C E L E T A C O V D A
M K I S C D C S P U O R G S M K L A T R
K E N E W C O N N E C T I O N S F Q O E
E E O E B I N F E N I L A O R I M U V S
S P X H L A N I O R S I W U N P K A O E
D S M K L A W E G N E L L A H C A T L A
N M N E R R Y A L H E F N Y P S L I U R
• ADVOCATE • AQUATICS • BIKE MS • CHALLENGE WALK MS • DONATE • EDUCATE INSPIRE • EXERCISE • FINANCIAL ASSISTANCE • FINANCIAL PLANNING • GATEWAY CHAPTER ANSWER KEY ON PAGE 14
E Y E X D A E O L D T C F G C E H C N C
I E T S O U A T G K I O C I N M T S T H
R L A M I E C E P A M B F D D V N O E M
F I N A N C I A L A S S I S T A N C E S
E N O N T S R P T T H N S K T S E E R C
L F D I P A L E L E G C A E E A P K S H
E M W O P A I K X L I R Y M N M R E A A
T N W R N T N C I E O N R A T L S S L M
I E I N P D I B H O A T S A W A L L A P
• GOLDEN CIRCLE • INTERNSHIPS • KEEP SMYELIN • KNOWLEDGE IS POWER • LENDING LIBRARY • MAKE A DIFFERENCE • MS CHAMPIONS • NEW CONNECTIONS • NIGHT OF STARS • RESEARCH MS
R E I N T E R S H I P S A P Y E E E E I
C N T T T A K E A C T I O N I R T I W O
G U A E R U B S R E K A E P S R B A R N
S N O Y E G O L D E N C I R C L E C G S
NOTE: MULTIPLEWORD PHRASES DO NOT HAVE A SPACE ON THE WORD GRID. SOME WORDS OVERLAP.
• SPEAKERS BUREAU • TAI CHI • TAKE ACTION • TALK MS GROUPS • TELECONFERENCE • TELEFRIENDS • VOLUNTEERS • WALK MS • WELLNESS • YOGA
TOLL FREE NUMBER 1 800 344 4867
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NEWS BRIEFS
WOMEN ON THE MOVE
GIVE A DAY GET A DISNEY DAY
The 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.
Disney’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.
The Chapter also honored its three Women of Courage: Mary Jinkerson, Shannon Ondracka and Cathy Poe. Congratulations to our honorees!
Keith Schieler, Director of Sales for Anthem BCBS and Chapter President Phyllis Robsham
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.
FREE BIKE MS TRAINING Women Of Courage (clockwise from left) Shannon Ondracka, Maureen Manley, Cathy Poe and Mary Jinkerson.
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JOIN THE MOVEMENT
Whether 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.
Thanks to our 60 Disney volunteers who helped with a Chapter mailing Another group of volunteers delivered National MS Society literature and books specific to MS to our 90-county regions.
Jennifer and Christian Sellers helped deliver MS literature to area libraries. During Walk MS season more than 400 Disney volunteers helped keep our walkers moving at our six metro walks.
RESEARCH
STAY INFORMED ON 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:
Society leaders meet with CCSVI researcher Dr. Paulo Zamboni (second from left) at a NYU briefing chaired by Dr. Joseph Herbert (second from right).
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.
• 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 888881-1918 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! TOLL FREE NUMBER 1 800 344 4867
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BENEFITING THE NATIONAL MULTIPLE SCLEROSIS SOCIETY
BENEFITING THE NATIONAL MULTIPLE SCLEROSIS SOCIETY
GET DIRTY FOR MS!
GET DIRTY FOR MS!
SATURDAY, JUNE 26 Saturday, June 26
Mud Run is a 10K race with a series of boot camp style obstacles that Mud Run is a 10K race with a series of have boot camp style obstacles that have been surrounded by mud. been surrounded by mud.
100% fundraising contributions 100%of ofthe the fundraising contributions a portion of race proceeds are andand a portion ofthe the race proceeds are donated to the Gateway Area Chapter donated to theMultiple Gateway AreaSociety. Chapter of the National Sclerosis of the National MS Society. Registration Fee:$50 Fundraising Minimum:$100
Sign up or volunteer today! Registration fee: $50 Fundraising Minimum: $100 www.mudrunstl.com National Multiple Sclerosis Society SPONSORED BY: SPONSORED BY
RESEARCH
WHEN THE DIAGNOSIS IS PRIMARY PROGRESSIVE
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.
Call 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, carepartner 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
MS CROSS WORD SEARCH ANSWER KEY E C N E R E F N O C E L E T A C O V D A
M K I S C D C S P U O R G S M K L A T R
K E N E W C O N N E C T I O N S F Q O E
E E O E B I N F E N I L A O R I M U V S
S P X H L A N I O R S I W U N P K A O E
D S M K L A W E G N E L L A H C A T L A
N M N E R R Y A L H E F N Y P S L I U R
E Y E X D A E O L D T C F G C E H C N C
I E T S O U A T G K I O C I N M T S T H
R L A M I E C E P A M B F D D V N O E M
F I N A N C I A L A S S I S T A N C E S
E N O N T S R P T T H N S K T S E E R C
L F D I P A L E L E G C A E E A P K S H
E M W O P A I K X L I R Y M N M R E A A
T N W R N T N C I E O N R A T L S S L M
I E I N P D I B H O A T S A W A L L A P
R E I N T E R S H I P S A P Y E E E E I
C N T T T A K E A C T I O N I R T I W O
G U A E R U B S R E K A E P S R B A R N
S N O Y E G O L D E N C I R C L E C G S
facebook.com/gatewaymssociety
myspace.com/nationalmssocietygateway
twitter.com/gatewayms
youtube.com/gatewaymssociety
TOLL FREE NUMBER 1 800 344 4867
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(800) 344-4867
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 or 1-800-344-4867 www.gatewaymssociety.org MS Connection © 2010 A quarterly newsletter published by the National Multiple Sclerosis Society, Gateway Area Chapter. Chapter President • Phyllis Robsham Newsletter Editor • Joe Cavato Writers Joe Cavato Laura Choate Kim Fitzsimmons Alex and Sam Gandt David 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
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JOIN THE MOVEMENT: nationalMSsociety.org
FROM THE PRESIDENT
A LETTER FROM THE PRESIDENT PHYLLIS 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!
happenings 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.
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!
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 diana.post@gatewaymssociety.org.
The goal of Deliver A Smile is to search out those individuals who are in long-term care or are homebound 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. www.gatewaymssociety.org
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HAPPENINGS
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.
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.
Gateway Area Chapter
HAPPENINGS
New Connections
New Connections Registration
Thursday, August 12 6-8 p.m.
[ ] New Connections, Alton, IL Thursday, August 12
Tony’s Restaurant 312 Piasa Street Alton, IL 62002
Name_____________________________ Address____________________________ City/State/Zip________________________ Home phone_________________________
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.
Work phone_ ________________________ E-mail_____________________________
Staff members from the Chapter will be attending to let you know what we do and how we can help.
Date of diagnosis_ _____________________
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!
Does anyone in your party use a mobility device?___
Registration Deadline: August 9 This program is sponsored by Bayer Healthcare.
Guests (please include age)________________ 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 Calendar” to choose the program you would like to attend.
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1.800.344.4867
happenings
John L. Trotter Research Program Registration
Thursday, September 23 7-9 p.m.
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?_ ___________
Sheraton Westport Hotel – Lakeside Chalet 191 Westport Plaza, St. Louis, MO 63146
KEYNOTE SPEAKER:
Dr. Mark Freedman Director – Multiple Sclerosis Research Clinic The Ottawa Hospital, Division of Neurology Ottawa Ontario
LEARNING OBJECTIVES:
• Learn about bone marrow transplants and their relationship to treatment of multiple sclerosis. • Learn why stem cell research is important to people living with MS. • Discover what some common misconceptions about stem cell research are. • Explain some of the distinctions between different types of stem cells. Cost: $15 (fee waivers are available) Early Registration Discount: $12.50 (by August 27) Registration Deadline: September 17, 2010 Call 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 Program September 23, 2010
Payment Information ( ) Fee waiver requested ( ) Check enclosed payable to MS Society ( ) Visa ( ) MasterCard ( ) Discover_ ( ) Am. Express Card # _ ___________________________ Expiration Date:_______________________ 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, United Access and Wachovia.
www.gatewaymssociety.org
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HAPPENINGS
John L. Trotter Research Program Are Bone Marrow Transplants the Answer?
Gateway Area Chapter
Research MS
HAPPENINGS
OBJECTIVES: MS specialists will provide up-to-date information on: • Research and new therapies • New data on disease modifying medication for MS
RESEARCH MS – EDWARDSVILLE, IL
Saturday, August 28 11 a.m. - 1 p.m. Sunset Hills Country Club 2525 Hwy 157 South Edwardsville, IL 62025
Research MS Registration [ ] Research MS, Edwardsville, IL August 28, 2010 [ ] Research MS, Sikeston, MO August 28, 2010 Name_____________________________ Address____________________________
SPEAKER: Dr. Gregory Wu Assistant Professor of Neurology, Division of MS, Washington University in St. Louis
City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ E-mail_____________________________ Do you use a mobility device?_______________
RESEARCH MS – SIKESTON, MO
Saturday, August 28 10 a.m. - Noon Location, TBD
SPEAKER: Dr. Barry Singer Neurologist at Missouri Baptist Medical Center Director of The MS Center for Innovations in Care
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Do you prefer a vegetarian meal?_ ___________ 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, EMD Serono, Teva Neuroscience Access and Wachovia.
1.800.344.4867
happenings Family Evening Columbia, MO
Family Evening Registration
Saturday, June 19 3-7 p.m.
[ ]
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 area g Face painting g Raffle prizes g Barbeque g Dessert potluck g Games and other outdoor activities Cost: FREE PROGRAM Fee waivers are available for transportation to this program.
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:_ __________ ________________________________
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 Boeing and United Access.
www.gatewaymssociety.org
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HAPPENINGS
Stephens Lake Park Riechmann Pavilion 2300 E. Walnut Columbia, MO 65201
Stephens Lake Park, Columbia, MO Saturday, June 19
Gateway Area Chapter
Rehabilitation in MS:
HAPPENINGS
Strategies for Occupational and Physical Therapists
Saturday, September 25 8 a.m. to 5 p.m. Sunday, September 26 9 a.m. to Noon Hilton Garden Inn, 360 Regency Park Drive, O’Fallon IL, 62269
Registration fee is $100 per person or $75 per person before August 25, 2010. Student fee: $30 Registration Deadline: September 20, 2010 Instructors: 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, MO Objectives • 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. 24
Strategies for Occupational and Physical Therapists Registration [ ]
Rehabilitation in MS: Strategies for Occupational and Physical Therapists September 25-26
Name_______________________________ 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. Express Card # _ ___________________________ Expiration Date:_______________________ 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. Accreditation Information: This course is being reviewed for continuing education hours for occupational and physical therapy practitioners by an approved provider.
1.800.344.4867
happenings Psychosocial Intervention In Multiple Sclerosis: Strategies for Mental Health Professionals
[ ]
Town & Country, MO, August 6, 2010
Name_____________________________ Guest name_ ________________________ Address _ __________________________ City/State/Zip________________________ Delmar Gardens, Garden Villas Home phone_________________________ Retirement Community, 13590 S. Outer Work phone_ ________________________ 40 Rd., Town & Country, MO 63017 E-mail_____________________________ Do you prefer to receive your confirmation Registration fee is $75 per person or $50 per person before via mail or e-mail?_ ____________________ July 9, 2010. Student fee: $30 Profession: q LPC q PSYCHOLOGIST q LCSW q OTHER _____________________ Dr. Kris Herfkens, PhD Triangle Neuropsychology Services, PLLC, Durham, NC Payment Information ( ) Fee waiver requested Mary DuParri, LPC, Private Practice , St. Louis, MO ( ) Check enclosed payable to MS Society ( ) Visa ( ) MasterCard ( ) Discover_ ( ) Am. Express Program Topics • Multiple Sclerosis: What You Need to Know About the Disease Card # _ ___________________________ Expiration Date:_______________________ • “Trying-on” Symptoms of MS • Adapting to Life with Multiple Sclerosis: Emotional Send to: Challenges and Coping Strategies National Multiple Sclerosis Society, • Cognitive Dysfunction in MS 1867 Lackland Hill Parkway, St. Louis, MO 63146 • Case Vignette Presentations and Discussion or Fax to 314-781-1440 • Multiple Sclerosis and Intimacy To register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the program you • Parenting: Choices and Challenges would like to attend. • Professional Challenges Accreditation Information: Objectives Psychologists: The University of South Florida College of Medicine is ap• Describe the physical, emotional, and cognitive impact of proved by the American Psychological Association to offer continuing educaMS on individuals and their families. tion for psychologists for 6.5 hours of continuing education credit. Social Workers, Professional Counselors, and Marriage and Family Thera• Recognize and address unique clinical challenges to pists The University of Texas at Arlington School of Social Work Professional working with clients with a chronic, disabling illness. Development Program is an approved provider of continuing education for • Identify client needs and facilitate efforts to adapt and social workers, licensed professional counselors, and licensed marriage and problem-solve. family therapists for 6.5 hours of continuing education credit. www.gatewaymssociety.org
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HAPPENINGS
Friday, August 6, 9 a.m. – 5:30 p.m.
Strategies for Mental Health Professionals Registration
Gateway Area Chapter
TALK MS GROUPS
HAPPENINGS
MISSOURI Cape Girardeau
3rd Saturday, 10 am
Columbia
Call for Dates
Crystal City/Festus
2nd Tuesday, 1 pm
Fulton
Call for Dates
Jefferson City
1st Monday 6 pm
New London Poplar Bluff St. Charles Washington West Plains
2nd Monday, 7 pm 2nd Sunday, 2 pm 3rd Sunday, 3pm TBA 3rd Wednesday, 5 pm
St. Francis Health & Wellness Center Healing Arts Building, Conference Room 150 S. Auburn, Cape Girardeau, MO 63703 University of Missouri-Columbia Quarterdeck Bldg., Rm. 118 2401 Lemone Ind. Dr., Columbia, MO 65201 Disability Resource Assn. 420B S. Truman Bl., Crystal City, MO 63019 Callaway Community Hospital 10 South Hospital Drive, Fulton, MO 65251 St. Mary’s Health Center, Assembly Hall St. Mary’s Medical Plaza, off of West Dunklin Jefferson City, MO 65101 Call for Location
Sharon (573) 332-8148 Deanna (573) 882-6767 Marlene (636) 464-2533 Sharon webradleys@yahoo.com Diana (573) 642-9234 Chris (573) 645-0130 clepper@mobankers.com Debby (573) 267-3365 mlrdsr@rallstech.com Tamra (573) 568-3912 cawalker@sbcglobal.net
First Christian Church 1601 North Main, Poplar Bluff, MO 63091 Hardee’s Restaurant at Mid Rivers Mall Dr. Jim (636) 940-1521 and Mexico Rd.
Ozark Medical Ctr. Shaw Medical Bldg. 2nd Charline (417) 469-1068 Fl. 909 Kentucky St., West Plains, MO 65775 Sally (417) 469-4842
ST. LOUIS METRO Affton Mid-St. Louis County West County Perspectives on MS Networking Group (mid-30’s & under) ILLINOIS Alton/Wood River Belleville/ O’Fallon 26
1st Thursday, 7pm 2nd Saturday 1:30pm 2nd Tuesday, 7 pm 1st Saturday, 10 am 3rd Tuesday of each month 7pm-9pm 2nd Sunday, 2:30pm
Weber Road Library Linda (314) 544-5623 4444 Weber Rd, St. Louis, MO 63123 St. John Rehab Hospital, 14561 North Kevin (314) 841-3755 Outer Hwy 40, St. Louis, MO 63017 Living Word United Methodist Church 17315 Manchester Rd., Wildwood, MO 63038 Walt (636) 256-9171 Mary (314) 542-9303 NMSS Office Gateway Area Chapter 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Kidsho4@swbell.net Michelle (636) 447-5407 The United Presbyterian Church, 2550 Rock Hill Rd., Wood River, IL 62095
Lisa 618-258-0615
First United Methodist Church 504 East Highway 50, O’Fallon, IL 62269
Amy (618) 235-4226
1.800.344.4867
happenings TALK MS GROUPS ILLINOIS CONT’D Granite City
Call for Dates 4th Tuesday, 6:30 pm
Metro East
June 23, 7 pm Aug. 25, 7 pm
Mt. Vernon
Call for Dates
Southern Illinois
2nd Tuesday, 5pm
Susan (217) 324-7106 Christian Church of Litchfield susie57@consolidated.net 131 Yaeger Lake Trail, Litchfield, IL 62056 Ruth (217) 999-8924 tuba66@frontier.net LINC, Inc. Diane (618) 235-8823 120 East A Street, Belleville, IL 62220 Earhart500@aol.com Faith Lutheran Church 1104 N. 42nd St. Terri (618) 242-8448 Mt. Vernon, IL 62864 Heartland Regional-Medical Center Robert (618) 983-0321 Classroom #2 3333 West DeYoung, Marion, IL 62959 Lisa (618) 983-0443
HAPPENINGS
Litchfield
Group needs new leader. Contact at (800-344-4867) or Gateway Regional Medical Ctr, Pascal Hall Allison Beth (618) 447-5456 2100 Madison Ave, Granite City, IL 62040 allison.harper@gatewaymssociety.org
SPECIALIZED GROUPS Men’s Chat MS Fun, Friends & Food Veterans with MS CarePartner and Family Group
Last Tuesday of Telephone group the month, 7 pm David C. Pratt Cancer Center Sept. 7 St. John’s Mercy Medical Center 6pm 607 S. New Ballas Rd., St. Louis, MO 63147
Joe S. jsalacki@sbcglobal.net
Michelle (314) 251-6400 Debbie (636) 579-0264 debrafriends@hotmail.com 2nd Wednesday, Veterans Admin. Medical Center 1 Penny or Patti (314) 652-4100 ext. 10 am Jefferson Barracks Dr., St. Louis, MO 63125 4523 patricia.noonan2@med.va.gov Office Gateway Area Chapter 3rd Wednesday, NMSS Allison (800) 344-4867 1867 Lackland Hill Parkway, St. Louis, MO 63146 7 pm allison.harper@gatewaymssociety.org
Talk MS Group Open House 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.
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.
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
Evansville, IN Caregiver Group – 2nd Tuesday 6:30 p.m. Evansville Service Center, Conference Room, 815 John Street, Fred Frayser (812) 499-4147
Evansville, IN – 2nd Thursday, 6 p.m. Evansville Service Center, Conference Room, 815 John Street, Alice Burns (812) 602-4158
www.gatewaymssociety.org
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Gateway Area Chapter
HAPPENINGS
MS Aquatics
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.
Therapeutic recreation programs brought to you in part by unrestricted educational grants from Anthem Blue Cross/Blue Shield and Wellpoint. 28
ST. LOUIS METRO AREA
Wellbridge Athletic Club –( Clayton) Contact: Trudy C. (314) 746-1500 x1551
Carondelet Park Rec Plex Contact: Shannon (314) 768-9622
Wellbridge Athletic Club – (Town & Country) Contact: Abby (636) 207-3000
Center of Clayton Contact: Diane (314) 353-4960
MID MISSOURI
Bridgeton Community Center Contact: Cole (314) 739-5599
Chesterfield JCC Contact: Sheena Koster (314) 442-3495
Columbia Activity & Recreation Center Contact: Janel (573) 874-7460 x7700
Emerson Family YMCA (North County) Contact: Georgia/Chris (314) 521-1822
Jefferson City YMCA Contact: Erica Hart (573) 761-9021
Hazelwood Community Center Contact: 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 Aquatics Contact: Carolyn (636) 896-0999 South City Family YMCA Contact: Rich (314) 644-3100 St. Charles County YMCA Contact: Joyce (636) 928-1928 x250 The Pointe at Ballwin Commons Contact: Leslie or Adam (636) 227-8950 Washington Four Rivers Family YMCA Contact: Ann (636) 239-5704
1.800.344.4867
Mexico Family YMCA Contact: Consuelo (573) 581-1540
SOUTHERN AND METRO ILLINOIS
John A. Logan College Contact: Chris G. (618) 985-2828 x8504 Jerseyville Wellness Center Contact: Jennifer R. (618) 498-3500 O’Fallon Community YMCA Contact: (618) 628-7701
SOUTHEAST MISSOURI
Black River Coliseum Contact: Mandi E. (573) 686-8009 Cape Girardeau Municipal Pool Contact: Pat Grebe (573) 335-4040
The Chapter offers scholarships for attendance and transportation to the therapeutic recreation programs.
happenings
Yoga Sites ST. LOUIS:
Yoga St. Louis Iyengar Yoga Class 3305 Jamieson Ave. St. Louis MO 63139 Tuesdays, 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 MO Instructor: Linda Whitney (314) 729-0181 Tuesdays June 22 - August 10 5:30-6:30 p.m. (Beginner) 7-8 p.m. (Gentle) Thursdays June 24 - August 12 9:30-10:30 a.m. (Beginner)
SOUTHEAST MISSOURI
Elm Street Yoga 904 Elm St, Suite 210, Columbia, MO 65201 www.elmstreetyoga.com CALL FOR CLASS TIMES Instructor: Linda Lutz Cost: $35 for 5 classes Class size limited to six people Contact: Linda (573) 441-8566 or lindalutz@mac.com
PARC Fitness Center 2620 N. Westwood Blvd Poplar Bluff, MO 63901 Phone: 573-686-5985 Mondays, 7 - 7:45 p.m. Wednesdays, 6 - 7:30 p.m. (slower paced class) Walk-ins welcome! Instructor: Mindy Matthews
METRO EAST AND SOUTHERN ILLINOIS Sukha Yoga Center 18 South High St., Belleville, IL Instructor: Sarah Fraser Cost: call for class times/fees Contact: Sarah (618) 236-9642 Web site: www.sukhayogacenter.com One-O-One Yoga 101 South Graham Carbondale, IL Contact: Sarah Miller, 618-457-8186 Cost: Call for class times/fees Web site: www.center101yoga.com
Your Yoga for Your MS
Cost: $54 for 6 weeks and $72 for 8 weeks.
The Chapter offers scholarships for attendance and transportation to the therapeutic recreation programs. www.gatewaymssociety.org
HAPPENINGS
Olivette Community Center 9723 Grandview Drive St. Louis, MO 63132 Cost: $10/ class Call: (314) 781-9020 or 1-800-344-4867 Wednesdays 10 - 11:30 a.m. (Iyengar Yoga Class) Instructor: Kathy Simon
MID MISSOURI
Yoga at the Firm 1610 Freedom Dr. West Plains, MO 65775 Instructor: Vicki Hogan Contact: Vicki (417) 293-1184 or the Firm at (417) 257-7800 Cost: $40 for an 8-week session
Adapting Yoga to All Ability Levels
MS 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 anxiety g Improves spasticity g Helps overcome stiffness g Increases oxygen in the blood g Promotes relaxation and sound sleeping g Encourages living in the moment g Provides a fun way to exercise and meet new friends 29
Gateway Area Chapter
Wellness Network
HAPPENINGS
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: • June 24, Nutrition • July 29, Exercise Equipment • August 26, Staying Active in Warm Weather • September 30, Weight Management
Wellness Network Registration Please 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_____________________________
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.
Address____________________________
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.
Work phone_ ________________________
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.
City/State/Zip________________________ Home phone_________________________
E-mail_____________________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440
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. 30
Program sponsored by Anthem Blue Cross/Blue Shield and Wellpoint.
1.800.344.4867
happenings Midwest Teleconference Series 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
Bowel Dysfunction and MS
Speaker: Dr. Joel M. Wittles Associate Professor of Clinical Medicine, Department of Medicine, Division of Gastroenterology, Indiana University School of Medicine Date/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, ACSW Vice 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 Administration Objectives: Increase knowledge of tools and information needed to navigate the SSDI application and appeal process.
Teleconference Registration Please mark the sessions in which you would like to participate:
[ ]
Coping with Change June 14, 2010, 7-8 p.m.
HAPPENINGS
Speaker: Dr. Jeri Morris Licensed Clinical Neuropsychologist, Assistant Professor, Northwestern University Date/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 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.
www.gatewaymssociety.org
Program sponsored by Biogen Idec and Wachovia.
31
Gateway Area Chapter
Relationship Enrichment Course:
HAPPENINGS
2 Days to a Lifetime of Relationship Satisfaction Saturday, June 26 to Sunday, June 27 Hilton Garden Inn in Chesterfield 16631 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 team g 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 couplesprogram@nmss.org. Fee waivers for this program and/or transportation are available.
32
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. • July 27, 2010 • August 3, 2010 • August 10, 2010 • August 17, 2010 • August 24, 2010 • August 31, 2010 FREE PROGRAM!
1.800.344.4867
happenings Resource Center The hot days of are here!
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
MARKETPLACE HOUSE FOR SALE 4-bedroom, 3.5 bath 2-story home in Chesterfield. 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.
www.gatewaymssociety.org
33
HAPPENINGS
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:
Keep in mind that purchasing an airconditioner 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) 3444867, option 1.
Gateway Area Chapter
EAT LESS AND PROSPER
HAPPENINGS
BY 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 34
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
1.800.344.4867
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
happenings SAVE THE DATES!
JUNE 2010
AUGUST 2010
4-6 Challenge Walk MS, St. Charles County, MO 12 Night at The Ballpark, Marion, IL 14 Midwest Teleconference Series 19 Family Evening, Columbia, MO 24 Wellness Network 26 MS Mud Run, Harrah’s St. Louis 26-27 Relationship Enrichment Course, Chesterfield, MO
6
Family WeekendTouch of Nature
BENEFITING THE NATIONAL MULTIPLE SCLEROSIS SOCIETY
9 12 21 21 26 28
Psychosocial Intervention in MS: Strategies for Mental Health Professionals, St. Louis, MO Midwest Teleconference Series New Connections Social Gathering, Alton, IL Walk MS – O’Fallon, IL Pediatric MS Dinner Program Wellness Network Research MS – Edwardsville, IL; Sikeston, MO
SEPTEMBER 2010
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 2010 12 29
Midwest Teleconference Series Wellness Network
11-12 Bike MS: Express Scripts Gateway Getaway Ride 2010 13 Midwest Teleconference Series 18 Walk MS – Washington, MO 23 John L. Trotter Research Program, St. Louis, MO 25 Walk MS – Dexter, MO; Mt. Vernon, IL 25-26 Rehabilitation in MS: Strategies for Occupational and Physical Therapists, O’Fallon, IL 26 Walk MS – Ste. Genevieve, MO 30 Wellness Network
www.gatewaymssociety.org
Be 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: • 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
Jumpstart Your Relationship
This 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. 35
HAPPENINGS
Chapter Calendar
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Permit No. 3914 St. Louis, MO
Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146
Gateway Area Chapter Gateway Area Chapter 1867 Lackland Hill Parkway
happenings St. Louis, MO 63146
making the most
National Multiple Sclerosis Society
of life and the least of MS
In this issue Deliver a Smile. . . . . . . . . . . . . . . . . . . 19 New Connections . . . . . . . . . . . . . . . . 20 John L. Trotter Research Program. . . . 21 Research MS. . . . . . . . . . . . . . . . . . . . . 22 Family Evening Columbia, MO. . . . . . 23 Professional Education . . . . . . . . . . 24-25 Talk MS Groups . . . . . . . . . . . . . . . 26-27 Therapeutic Recreation. . . . . . . . . 28-29 Wellness Network. . . . . . . . . . . . . . . . 30 Midwest Teleconference Series . . . . . 31 Relationship Enrichment Course. . . . 32 Resource Center. . . . . . . . . . . . . . . . . . 33 Living With MS . . . . . . . . . . . . . . . . . . 34 Chapter Calendar. . . . . . . . . . . . . . . . . 35
The Chapter is also offering a Summer has arrived and the Chapter has something for you. new program - the Relationship Enrichment Course (pg. 32).
Get connected with others living with MS through our New Connections program (pg. 20) or by attending a Talk MS Group (pgs. 26-27).
The Chapter is also gearing up for the Bike MS: Express Scripts Gateway Getaway Ride 2010 September 11-12.
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.
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.
Get active with a Therapeutic Recreation program (pgs. 28-29) or through the Wellness Network (pg 30).
Your Source for Knowledge, Wellness, and Support
Summer 2010