MOVING TOWARD A WORLD FREE OF MS | WINTER • 2009
GATEWAY AREA CHAPTER
WE’VE JOINED THE MOVEMENT
WILL YOU?
WORD SEARCH
Chapter News Briefs PAGE 7
ON THE COVER
Clockwise from left: board member David Kodner, Bike MS participant Steve Woods, Bike MS volunteer Rebekah Walters, Challenge Walk MS participant Rick Evans, Walk MS participant and programs volunteer Brenda Berra, neurologist and research advocate Dr. Robert Naismith, and Wellness volunteer Toni Kodner have all joined the movement. Will you? Read about all the ways you can get involved in the Gateway Area Chapter of the National MS Society in this issue of the MS Connection. 2 |
Ask the Professional PAGE 10
INSIDE THIS ISSUE
Features
T I I B C I T From the Board B PAGE 11 A A R X O E S D R
B E P S N E I N T R M Y E L I N V
P B I R B R I G L E S I O N S E E
S Y M P T O P R M Y N M I S S L L B B A N I A G B B O U N N D N I I I M N E T O P A MS Brain Games L I A P S S PAGE 13 V O B E O V P A R N R S S O E D B U N I C S E X V L A P R M I A X A E I O R E L C S R V E O A M X E A N I E
In Every Issue
CHAPTER NEWS BRIEFS | 7
Triple Play - Chapter Fundraising Events are a family affair for Jeremy’s Juggernauts
Read all about what’s going on in the Chapter and what’s coming up
CONNECT | 4
ASK THE PROFESSIONAL | 10
Talk MS Programs Utilize Terrific Resource – People Living with MS
Dr. Robert Naismith addresses the question of how to know when to switch therapies
Circles of Strength – New Ways to Give for Every Budget
ADVOCATE | 6 Whether it’s participating in Legislative Action Day or just staying informed, everyone can be involved
VOLUNTEER | 8 Whether in the office or on the road, Chapter relies on key volunteers
FROM THE BOARD | 11 Meet our new board chair Lynda Baris and read why she joined the movement
GET TO KNOW US | 12 Learn what our Services department does on a daily basis
MS BRAIN GAMES | 13 Exercise your mind with an MS word puzzle
RESEARCH | 15 NETWORK | 14 Follow us and help spread the word by joining with us on our social web sites
JOIN THE MOVEMENT: nationalMSsociety.org
Where we stand in research: challenges and opportunities
FROM THE PRESIDENT | 16 A letter from Chapter President Phyllis Robsham
O C G I E N N N M S B E G I L O E
NEW!
PARTICIPATE | 3
DONATE | 5
M E O F S T I E L D T C S U E S G
S M I B D U S D V E N O X A P O C
S M I B D U S D V E N O X A P O C
D T T E S N S N G N I L D R I G S
I T R R M S N I T T P S L V T T P
X P E E P L A L B I E X I C L P E
E A V S S E N B M U N N O X U N O
P B N N E S V R E D T L E B M S I
DEVELOPMENT
TRIPLE PLAY – JUGGERNAUTS MAKE THEIR MARK IN CHALLENGE WALK MS, BIKE MS AND WALK MS When most people think of raising money, you think you are in for a grueling venture as it may be tough to ask people for money. For T.J. Kohler of Barnhart, however, “tough” is not the first sentiment that comes to mind. T.J. and his wife, Alice, became involved with the National MS Society after their son, Jeremy (age 37) was diagnosed at 26. They started with Walk MS and in 2002 participated in the Challenge Walk MS, which gave T.J. a sense of belonging to something bigger than just himself, and provided him with more knowledge about the people who work for the Society and about the disease itself.
Participating in so many events can get hectic, but for Kohler, giving someone else with MS the possibility of a better life makes the tremendous time commitment worth it. “My son isn’t going to get any better,” T.J. said. “He’s had all the treatments and the best doctors and medications, so, if I can make a difference in someone else’s life, I’m going to do it.” T.J. and his team have raised more than $30,000 through letter writing campaigns and wine tasting events. “Many people will say, ‘Oh I can’t do this, I can’t ask my friend or my co-worker for $100 or even $25,’ but all you need to do is tell people what you are doing. The money will come,” T.J. said. “That’s how I got started, actually. I told a friend I was going to be riding and he asked if I had any sponsors. I told him that I didn’t and was going to be putting up the entry donation myself. He immediately opened his wallet and said, ‘Here’s a hundred bucks.’”
After the Challenge Walk, T.J. decided to push himself further and joined Bike MS in 2004. He has recruited numerous people to join him in his efforts under the T.J. expects to participate in the team name “Jeremy’s Juggernauts,” events as long as he is physically which has grown to include 45 able, and hopes that more people members.
will be inspired to join. “As sad as our situation is with our son, partnering with the MS Society has given us so many positive things to be thankful for,” T.J. said.
2010 DATES APRIL 10: Arnold, MO; Carbondale, IL; Eureka, MO APRIL 11: Clayton, MO; Edwardsville, IL; St. Peters, MO APRIL 17: Godfrey, IL APRIL 18: Cape Girardeau, MO APRIL 22: Steppin’ Out for MS Night Walk APRIL 24: Columbia, MO; Millstadt, IL MAY 1: Troy, MO; Poplar Bluff, MO
June 4-6, St. Charles, MO
September 11-12 Columbia, MO
TOLL FREE NUMBER 1 800 344 48672010 | 3
PROGRAMS
WHAT IS ALL THE TALK (MS) ABOUT?
PROGRAMS CONNECT PEOPLE WITH GREAT RESOURCE: OTHERS LIVING WITH MS
While being diagnosed with multiple sclerosis comes with many questions and feelings of fear and anxiety, there are many resources for people living with the disease. People can go to the Society’s Web site or just google “multiple sclerosis” and find all sorts of information on symptoms, treatments, research and more. The Chapter can provide brochures and booklets answering questions ranging from fatigue to walking issues related to MS. But there’s another great resource out there – those actually living with MS. Who else to better answer questions about living with MS than those who do it every day? The Chapter’s Talk MS programs aim to connect people living with MS with others in similar situations so they can learn from each other, find comfort in each other or just socialize. Talk MS volunteers live with MS, are trained by and work closely with the Chapter. Jim Walker has been involved in the St. Charles Talk MS group since 2002 and has led it since 2008. He also participates in the Chapter’s Men’s Chat group. “I was looking for sources of information and, originally, to meet with people who have MS,” Jim said. “It’s also something to do.” 4
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In a way, the Talk MS groups are an extension of the Chapter, as group leaders work with the Society in getting the latest news and updates on upcoming programs.
“I think we’re a good resource,” Jim said. “We’re kind of the personal contact for people to get involved with the Society. It’s local and we’re in the community. The Society does a great job, but the groups provide a personal touch and sense of community.” While attendance varies, Jim knows the value of the group and how important it is to just be there for people with MS. “Sometimes the groups are just casual, fun get togethers and sometimes you know you really helped somebody,” Jim said. “Even people who have lived with MS for a number of years can still get good information from another member of the group.” For those who may not be able to travel to a group meeting or if that just isn’t their thing, another Talk MS program called TeleFriends may suit them better. TeleFriends are volunteers with MS who provide weekly telephone contact, offering support and understanding to people with MS. Kelli Tovar, a TeleFriend volunteer, says the discussions are very informal and it’s important to just know that someone out there cares and is in a similar situation.
JOIN THE MOVEMENT: nationalMSsociety.org
Joe Salacki (front, left) and Jim Walker (front, right) know first hand the value of the Chapter’s Talk MS programs which include Talk MS Groups (pgs. 22-23) Beginning Conversations and Telefriends. “Most of the time, I just let them talk,” Kelli said. “The most important thing is to let people talk and listen to them. That’s all most people really need.” Another Talk MS program, Beginning Conversations, introduces people newly diagnosed with MS to what the Chapter has to offer through an informal, face-to-face meeting with a trained volunteer who lives with MS. Toni Kodner, has lived with MS for 30 years, is a big fan of the program. “I wish they had something like this when I was diagnosed,” Toni said. “It took me many, many years to make any use of the National MS Society resources. People decide to connect with the Chapter for different reasons. We discuss all the things the Chapter has to offer from financial aid to the wellness program to Telefriends.” Toni sums up all the Talk MS programs pretty well. “Sometimes they’ll look at you and you just know by looking in their eyes, that they just really want to talk,” Toni said.
DONOR
CIRCLES OF STRENGTH - AND SUPPORT The Chapter relies on the generosity of every single one of its donors. Without our donors, the Chapter wouldn’t be able to provide all of the programs and services to the 6,300 people in our area living with MS or fund research. Just as there are many ways to be part of the Chapter and something for everyone, there’s a way for everyone to give, including three unique donor groups. If you’re like a lot of people, a few dollars each month might never be missed ... but for individuals living with MS, those few dollars can mean everything. Participation in the Gateway Giving Circle is a monthly commitment of as little as $10 a month - an amount that can be conveniently charged to a credit card.
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gateway
In recognition of that commitment to our mission giving circle by becoming a member Sustaining the Movementof the Gateway Giving Circle, participants will be invited to a private dinner with a featured research specialist and the recurring contribution ... • Blends seamlessly into your monthly budget. • Makes it easier to plan and provide necessary programs and assistance to people with MS. • Is tax deductible. The Lawry Circle is the Society’s recognition program that acknowledges individuals and families who have remembered our organization through a bequest, gift annuity, or other deferred gift. To date, there are more than 200 Lawry Circle members throughout the country. Besides the personal feeling of joy of knowing they have contributed to the well-being of others, Lawry Circle members are recognized in Society publications—with their permission. Participants are invited to local programs and activities and receive special mailings keeping them current on
the valuable work of the Society. Participation ensures the continuation of our important work to create a world free of MS and the gift creates a personal legacy of hope for others. MS is a lifelong disease. Lawry Circle gifts help sustain our programs, services and research to help move us closer to a world free of MS. Because these gifts represent an expression of lifetime commitment to the Society, the members have no minimum gift level and membership is for life. The Golden Circle is our premier major donor program, recognizing annual gifts of $1,000 or more. The Golden Circle campaign seeks annual gifts from our friends and partners that will help us meet the needs of our community members with MS and their families, fund critical research in discovering the cause, advancing therapies and ultimately creating a world free of MS. Members of The Golden Circle lead by example, making a powerful statement and demonstrating their commitment to the: Cause – Gifts to the Chapter’s Greatest Need enable us to dedicate money where your local community needs it most. Care - Gifts to Local Programs and Services help to fund client programs that provide critical knowledge and improve the lives of those with MS to ensure independence and to optimize quality of life. Cure - Gifts to Research support dedicated researchers who are seeking the cause, treatment and cure for MS. Since its founding, the Society has committed more than $610 million to find the cause, treatments, and cure for MS. There has never been a more promising time to intensify the attack on MS. For more information please contact Beth Bauer at beth.bauer@ gatewaymssociety.org or 314-446-4177. TOLL FREE NUMBER 1 800 344 4867
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ADVOCACY
GETTING ACTIVE FOR MS THERE’S SOMETHING FOR EVERYONE
Stephen Kinstler, a member of the Chapter’s advocacy committee, explains that you really only need one thing to be an advocate. “Everyone can be an advocate if you believe in something strongly enough,” Stephen said. As activists, we relentlessly advocate for federal, state, and local government change essential to people with MS. We work together to break down barriers to care, improve access to quality health services, and make MS therapies more affordable. We fight for disability rights, MS research funding, and long-term care resources. Every year staff and volunteers from the Chapter visit the Missouri and Illinois state capitols on legislative action days to become the voice of all those living with MS. Staff and volunteers meet with government officials to make sure they know how different pieces of legislature may affect people living with MS. “The legislature is trying to do so much in such a small amount of time,” Stephen said. “MS affects everyone – people living with MS, their family and friends. To see everyone come together for a common goal is most heartening.” 6
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Stephen isn’t a professional public speaker, but when he’s at the capitol he just says what’s in his heart and explains why the piece of legislation is important to him. “I don’t have a slick presentation,” Stephen said. “I can only speak from the heart. It’s great to speak to someone who is receptive and who can do something about it.” While Stephen and other advocacy volunteers make the trip to Jefferson City and Springfield to speak to government officials directly, they certainly aren’t the only activists the Chapter utilizes. There are many ways to “Get Active for MS.” Your first step should be to sign up for Action Alerts at www.nationalMSsociety.org/ MSactivist. You will receive updates on health care reform, policy priorities, and solutions to MS issues. You can help spread the word by encouraging your friends and family to get involved. If you only have a few minutes:: • View the advocacy training video at gatewaymssociety.org click “Take Action” then click “Get Involved.” • Visit the MS activist blog at msactivist.blogspot.com/and leave a comment. • Send an email or call your elected official.
JOIN THE MOVEMENT: nationalMSsociety.org
Chapter representatives met with Congressman Russ Carnahan at Legislative Action Day in February. But you don’t have to visit your state capitol to be active for MS. If you have some spare time: • Post MS issues on your own web site, blog, or viral space. Link back to ours. • Learn about your elected officials and their voting records on health care issues. • Write a letter to the editor of your local newspaper. Tell your story and ask for change . If you can make more of a commitment: • Become an advocacy volunteer. Check out local opportunities on our Web site. • Visit your state or federal legislators in their local office. • Talk to the Chapter about becoming a spokesperson and sharing your personal story with others. • Join the Chapter’s MS activism committee. The most important thing about getting active for MS is staying educated. Whether it’s voting or contacting your elected official, you can make a difference.
NEWS BRIEFS
NIGHT OF 1000 STARS
The Chapter’s stars will be out on Thursday, January 21, 2010 for the annual Night of 1,000 Stars at the Sheraton at Westport Plaza – Lakeside Chalet. We will celebrate our volunteer family and their accomplishments, present our Annual Achievement Awards and conduct the annual business meeting, including nominations to our Board of Trustees.
PASSING THE TORCH
The Chapter would like to thank Helmut Starr for his outstanding dedication and leadership as the Chair of the Board of Trustees. We would like to welcome Lynda Baris, who has served on the board since 1994, to her role as the new chair. Thank you Helmut and good luck Lynda!
Westport Hotel Lakeside Chalet. Dr. Trapp discussed one of the hottest topics in MS research – nervous system repair. His presentation is available at the Chapter’s Lending Library. Local neurologists Dr. Barry Singer and Dr. Rob Naismith also spoke.
year total to more than $50,000! This community event was held August 29 and is sponsored by Sammie’s Prairie Inn and the Prairietown Fire Department. Festivities included: live music, a bake sale, auction, washers tournament and more.
MAKING A DIFFERENCE - ONE HOUSE AT A TIME
“Although we call this a one-day event, we add a lot of smaller events throughout the summer to add to it,” said organizer Riann Thompson. “We do things like guest bartending, a yard sale, selling raffle tickets and more. These smaller events not only add to our grand total but the community involvement also makes the final result a little more important to everyone involved.”
Chapter staff and about 70 volunteers rolled up their sleeves and truly made a difference in the lives of those with MS on Make a Difference Day on October 24. Eight teams of volunteers and staff completed projects like removing overgrowth, raking, washing windows and cleaning out gutters at eight homes of people living with MS. If you’d be interested in helping next year on October 23, go to www.gatewaymssociety.org and click “Volunteer.”
Prairietown Walk organizers present members of the Chapter with a check after another successful event.
MS AWARENESS WEEK
Helmut Starr and Lynda Baris
RESEARCH MS
In September, Dr. Bruce Trapp of the Cleveland Clinic delivered an educational presentation on nervous system repair to nearly 300 people at the Sheraton
A volunteer group from Saint Louis University truly made a difference to Benjaman and Ocie Lewis.
Be sure to mark your calendars for MS Awareness Week March 8-14. Wear orange that week, spread the word about the National MS Society and help us MOVE IT.
PRAIRIETOWN WALK BRINGS IN THE $$$
The fourth annual Prairietown Walk in Prairietown, Illinois raised nearly $15,000, bringing its fourTOLL FREE NUMBER 1 800 344 4867
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THROUGH THE EYES
VOLUNTEER
EILEEN GANDT
OFFICE VOLUNTEER I had worked in the advertising business all of my adult life. Although it was interesting and fun most of the time, it wasn’t terribly rewarding. I kept in close contact with my friends in the business, but the responsibilities and stress level had changed. My life changed in December of 2003 with my diagnosis of multiple sclerosis. While employed full time, it was devastating to think potential disability might prevent me from continuing to work. But I was back to work within two weeks and was able to continue working for another five years with multiple exacerbations. Volunteering always appealed to me, but the time element and health implications prevented me from making a commitment. In October of 2008, the advertising company that employed me closed its doors. 8
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Though this was devastating news financially, it presented some opportunities for me. My former company ran two trivia nights to support the MS Society, and put teams together for Walk MS in Clayton for the prior two years; I worked at the registration table. It was here I realized what a wonderful organization the Society is. Everyone involved with Walk MS was so helpful and appreciative. The people in charge were very knowledgeable and professional. Any question was answered with confidence. I didn’t want this to be my last experience working with them. Earlier this year another volunteer called me asking about my interest in helping out at the same event again. Because job prospects were not overwhelming me, I offered to work in the Chapter office once a week on Thursdays with a wonderful group of people. We put together mailings, do projects, talk a lot (in fact, sometimes we get too loud), and have a wonderful time. I’ve also been put on call patrol – calling people to thank them for their donations. It is remarkable to listen to most people who are so grateful for the call. Sometimes we discuss their experiences or family/friends who have MS which is very therapeutic for me.
JOIN THE MOVEMENT: nationalMSsociety.org
I volunteer to give back. Being diagnosed with the disease helps me to understand the challenges people with MS face every day. The Chapter is very dedicated to those with MS in this community. This volunteering experience has taught me that everyone has worth. When life is a struggle, the prospect of coming into the National MS Society, and working with the awesome staff makes me feel necessary.
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.
OF VOLUNTEERS
GARY DEABLER
BIKE MS MOTORCYCLE VOLUNTEER In 2000, a fellow motorcyclist asked me if I’d like to participate in a multiple sclerosis event, riding from San Antonio to Corpus Christi, Texas. Even though I didn’t know anything about the ride or the disease, I like to ride, so I said yes. During this event I saw the impact the motorcyclists had on those riding for a cure. I also knew it was something I could do to help others. Ever since then I rode in all the events in Texas until my career led me to Missouri, where in 2005 I participated in my first Missouri event. In 2006, I joined the Bike MS Logistics Committee. Since that time I’ve been on three events as the motorcycle escort team lead. This year Lou Bartoloni teamed up with me and between us, we recruited 60 other dedicated motorcyclists who gave up their weekend in September to volunteer for this worthwhile organization.
VOLUNTEER DONOR
As this is a volunteer group, I’ve made some great friends along the way, especially when the volunteers decide to return the next year and help again.
one cyclist said to wait because there will be a motorcyclist along the way soon with a tire pump. A few minutes later, one showed up to assist the cyclist.
My duties are to recruit motorcycle escorts and attend the Logistics Committee meetings to discuss issues with the other members in the planning of the event. The job of the motorcycle escorts is to patrol the bike route providing assistance to cyclists in need of support due to bike troubles or fatigue. We carry water; administer first aid; look for signs of dehydration and treat; summon help through the use of HAM and cell phones in the case of emergencies; inform the bicyclists how far the next rest stop is; help bicyclists through any traffic problems; help fix flat tires or fill up low tires; and give overall moral support. The motorcyclist does whatever it takes to support the bicyclists. We were referred to as Guardian Angels this year. Each motorcyclist uses his or her own motorcycle and can average at least 250 miles a day patrolling and offering assistance.
As both an escort and a team lead, the moment that really stands out is when people come up to us and say “Thank You.” Hearing those words keep us coming back because we’re helping others in their quest to ride for a cure. Knowing we are appreciated: it doesn’t get much more rewarding than that.
CALLING ALL ARTISTS The Chapter will feature the artwork of a local artist on its “Mission Possible” plaques. The plaques are presented to individuals who have raised at least $1 for each of the 6,000 people living with MS in the Chapter’s 90-county service area at the annual Night of 1,000 Stars dinner on January 21, 2010.The Chapter is asking artists of all ages whose lives have been affected by MS to submit a colorful drawing of what MS means to them. The drawing needs to be submitted on an 8 ½” x 11” sheet of white paper. Please submit your artwork by January 11, 2010 to Lura January at lura. january@gatewaymssociety.org or mail it to the Chapter.
The cyclists can expect to see a motorcycle every 8-10 minutes on the route which gives them peace of mind knowing help or assistance is not too far away. One example was when a cyclist had a flat and another one stopped to help. When it became time to use their CO2 cartridge, TOLL FREE NUMBER 1 800 344 4867
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MS CONNECTION
ASK THE PROFESSIONAL PATIENT QUESTION: What factors should be considered before switching therapies? IDENTIFYING A TREATMENT ‘FAILURE’ CAN BE DIFFICULT. The definition of breakthrough disease is a topic of Dr. Robert Naismith Barnes Jewish Hospital John L. Trotter MS Center
active discussion among doctors specializing in MS. If someone is having disease activity on treatment, there are a number of possible reasons and options. For example, some may remain on therapy if there are other favorable factors, as no therapy is 100% effective. Others may respond to a medication of similar efficacy if it is a different mechanism of action, as the inflammatory profile may differ within individuals, and
this can impact treatment response. Sometimes, we may increase the dose of a medicine, or even combine it with another immunosuppressant. Finally, some may decide to switch to a more efficacious medicine with potential risks, due to concern for disease severity. The question of changing therapies will only become more relevant in the near future, with the introduction of one or two new treatments each year for the next several years. The approach will undoubtedly be very individualized. Your MS doctor is constantly assessing whether your treatment is keeping your disease under proper control. This assessment is based upon the features of your disease, your symptoms, the neurologic exam, and the result of imaging. The start of the disease provides valuable clues to the long-term prognosis, and this is a major factor in the assessment. For example, those under 35 with isolated sensory or visual symptoms, complete recovery, and a long interval between the first and second relapse have favorable starting features. More concerning would be those who present with weakness and poor coordination, impairment of ambulation, poor recovery from the first relapse, and multiple early relapses. The initial MRI is 10
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JOIN THE MOVEMENT: nationalMSsociety.org
very important, as those with fewer lesions do better long-term. Also, if the MRI is accumulating a concerning number of lesions within the first five years, particularly on a therapy, then this would be a consideration. Several reports note that African-Americans become disabled more quickly, even despite being diagnosed early and being started on effective treatment. Personal considerations also factor into the decision, such as work and personal life, willingness to take more injections, and willingness to try newer medicines associated with some risks. The decision to switch medicines should be a discussion with your physician. It is OK to ask your doctor to explain his or her reasons to recommend a change, and to provide you with options. Switching medicines should be an informed decision made together. In the end, you have to trust your doctors to help you make the best decisions, since their knowledge and experience is why you seek their expertise. By understanding the rationale for why something is being done, you are being proactive about your disease and doing what it takes to remain healthy.
FISCAL YEAR 2010 BOARD OF TRUESTEES
FROM THE BOARD
LYNDA BARIS EXECUTIVE VICE PRESIDENT J.W. TERRILL, INC.
Why did I join the movement?
It was 1989 and my friend asked me to ride in what was then known as the MS150 (now the Bike MS: Express Scripts Gateway Getaway Ride.) It sounded like fun, so I agreed to participate. In so many ways I was not prepared for what would take place my first Bike MS weekend and I certainly did not know a thing about multiple sclerosis. Pedaling up and down the hills of Hermann was challenging. Along the way I met a man who was riding with his wife and young children. It was really hot and he seemed to be having a difficult time. We started chatting at a rest stop. He told me he had MS and thanked me for riding. I kept thinking I am young and healthy and if he can finish this ride than certainly I can. The rest of my first Bike MS weekend is a distant memory, but I was hooked. I loved the ride. I met a lot of new people. I raised a lot of money. I learned about MS.
For new Board of Trustees chair Lynda Baris, joining the movement has been a family affair as her husband Mitch and sons Justin and Alec participated in Bike MS this past year. I joined the Board of Trustees in MS. I am inspired by stories and 1994 and have been involved passion of other volunteers I over the years in many Chapter have met. activities, but my passion Now Bike MS has turned into remains with Bike MS. Every a family affair. This past year aspect of the event is amazing! I celebrated my 20th year I really enjoy being part of the of riding in the event. I rode Bike MS community. on a team sponsored by my I got involved because of the employer, J.W. Terrill Insurance, ride, but I have stayed involved and was joined by my husband for a variety of reasons. I Mitch and sons Justin (14) and admire the dedication and hard Alec (12). I am grateful for the work of the Chapter staff. The support I have received over the organization is managed in an years by those joining me in the efficient manner and our staff ride or sponsoring me year after delivers outstanding programs year. and services to more than 6,300 As I start my term as Chair of individuals and families whose the Board for the Gateway lives are affected by MS in our Area Chapter, I find hope in the 90-county service area. tremendous advances that have My involvement with the been made in treatment options Chapter has afforded me available to someone living the opportunity to build with MS and the progress made relationships with people whose in research efforts to find the lives are affected by MS. I am cause or cure for MS. But until motivated to do something that they find a cure I will keep on can find a cure for my friends or riding‌.what will you do? their loved ones who live with TOLL FREE NUMBER 1 800 344 4867
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GETTING TO KNOW US
HERE TO SERVE PEOPLE LIVING WITH MS
The Chapter’s services department includes (from left): Terri Garbo, Telia Starks, Elke Hansen, Kimber Wilcox, Danica Neale and Martie Fenger.
Individuals living with MS deal with many challenges daily. The Services Department of the Chapter exists to help individuals living with MS move forward, resolve and conquer those challenges. A person’s experience with the Services Department may start with the Information and Referral Center (IRC). If an individual just moved to the area or is newly diagnosed with MS and would like referrals for a neurologist or is looking for other resources, they can contact the IRC. The IRC provides information about MS, makes referrals to local resources and specialists that are available to listen and provide support. The center also connects individuals living in the Chapter area to staff in the Services Department who can provide more detailed information and referral if needed.
with issues ranging from emergency assistance (utilities, rent, and mortgage) to chore assistance; home and vehicle modifications; durable medical equipment to incontinence products; transportation to and from medical appointments, and more. After all paperwork (confirmation of diagnosis and financial assistance application) is filled out, a social worker reviews each request and contacts individuals to discuss the request. Living with MS can get complicated. When it does, the department’s Care Management Program is there to help. The program helps coordinate social, economic and health care resources to meet individual needs and prevent costlier care. Through individualized attention, the program promotes a better quality of life so people with MS can achieve the highest level of independence through difficult times. The need for Care Management is frequently caused by a change in an individual’s health status, caregiver situation, support network, and/or a financial crisis. The Services Department isn’t limited within their cubicle walls. Outside the office, the department collaborates with five MS centers including: Saint Louis University Department of Neurology and Psychiatry MS Center; John L. Trotter MS Center at Washington University; Saint Louis VA Medical Center at Jefferson Barracks and John Cochran Hospital; MS Center for Innovations in Care at Missouri Baptist Hospital; and the West County Multiple Sclerosis Center at St. John’s.
The Services Department has a loan closet of items available for use by individuals with MS. United Seating and Mobility operates the Loan Closet and their trained technicians make sure that each donated item is safe and ready to use. If an individual is in need of durable medical equipment (i.e. canes, wheelchair, scooter, walker, etc.) Services Department staff will check to see if there is any appropriate equipment available.
The department also collaborates with National Health Care of Town & Country, on a specialized 22-bed wing for residents with MS. The department is dedicated to educating the long-term care population about MS and about people with MS. The department offers in-services and trainings for healthcare professionals in skilled nursing facilities year-round. Staff also visit facilities in July and December to chat and bring a small gift to residents living with MS through the Deliver a Smile program.
Individuals living with MS may no longer be able to work. The Services Department offers a financial assistance program that promotes independence through referrals, programs and services. The department offers help
It’s impossible to list all the ways the Services Department is touching the lives of individuals living with MS each day. They are dedicated to the mission of the National MS Society and passionate about the work they do.
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JOIN THE MOVEMENT: nationalMSsociety.org
NEW!
EXERCISE YOUR MIND & LEARN ABOUT MS Exercise your mind and learn more about MS by completing this word search. For more information on these terms search them at www.nationalMSsociety.org. Talk MS group leader Robert Williams designed the word search. For more brain games go to www.MyMSMyWay.com. These free online games are designed specifically for people with MS. The program called MyBrainGames, was created by the MS Technology Collaborative, an alliance of Bayer HealthCare Pharmaceuticals, Microsoft and the National MS Society under the direction of a team of leading healthcare professionals specializing in MS and cognition, as well as members of the MS Community. Approximately 50 percent of people living with MS develop cognitive challenges, often in the areas of processing speed, working memory and complex
attention. According to the National Multiple Sclerosis Society, MyBrainGames will provide a series of fun and interactive cognitive challenges for the MS community. “Many times our patients are doing well physically but they may still struggle with cognitive ability,” said Dr. Stephen Kirzinger, director of the Multiple Sclerosis Program at the University of Louisville and one of the healthcare professionals who oversaw development of the MyBrainGames. “This presents the first step in assessing whether games can help counter the cognitive challenges of MS.” The games challenge the player’s processing speed, working memory, attention and task switching ability. MyBrainGames was also developed with technical modifications to ensure that the games are accessible to the MS Community.
WORD SEARCH T I I B C I T B A A R X O E S D R
B E P S N E I N T R M Y E L I N V
P B I R B R I G L E S I O N S E E
S P I B B D N L V P S N V I O R X
Y R S A B N E I O A O I L A R V E
M M S N O I T A B R E C A X E E A
P Y L I U I O P E N D S P A L O N
ANSWER KEY ON PAGE 14
T N L A N I P S O R B E R E C A I
O M B G N M A S V S U X M I S M E
M E O F S T I E L D T C S U E S G
O C G I E N N N M S B E G I L O E
S M I B D U S D V E N O X A P O C
D T T E S N S N G N I L D R I G S
MS BRAIN GAMES
I T R R M S N I T T P S L V T T P
X P E E P L A L B I E X I C L P E
E A V S S E N B M U N N O X U N O
P B N N E S V R E D T L E B M S I
• AVONEX • BETASERON • BLINDNESS • CEREBROSPINAL • CIS • COGNITIVE • COPAXONE • DMD • EXACERBATIONS • GAIT • GIRDLING • LESIONS • MRI • MULTIPLE SCLEROSIS
• MYELIN • NERVE • NUMBNESS • PAIN • PPMS • PREDNISONE • PRMS • REBIF • RRMS • SOLUMEDROL • SPMS • STRESS • SYMPTOM • TYSABRI • VEP • VERTIGO
TOLL FREE NUMBER 1 800 344 4867
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ONLINE
JOIN THE CONVERSATION!
FURTHER THE MOVEMENT!
Stay up-to-date with happenings at the Gateway Area Chapter of the National MS Society by joining the conversation.
With your help we can further the conversation about MS by spreading the word. Help increase awareness about MS, our fundraising events, programs and services offered by our Chapter though your social networks. Become a fan of the Chapter and suggest our Facebook page to all of your friends, share your stories and photos, and connect with others in the area. Follow us on Twitter and mention our Chapter in your tweets. View, comment and share our Youtube videos and submit your own! Connect with us on Myspace to share stories about MS and connect with others in our area.
– facebook.com/gatewaymssociety – twitter.com/gatewayms – youtube.com/gatewaymssociety – myspace.com/nationalmssocietygateway
WORD SEARCH - ANSWER KEY T I I B C I T B A A R X O E S D R 14
B E P S N E I N T R M Y E L I N V |
P B I R B R I G L E S I O N S E E
S P I B B D N L V P S N V I O R X
Y R S A B N E I O A O I L A R V E
M M S N O I T A B R E C A X E E A
P Y L I U I O P E N D S P A L O N
T N L A N I P S O R B E R E C A I
O M B G N M A S V S U X M I S M E
M E O F S T I E L D T C S U E S G
O C G I E N N N M S B E G I L O E
S M I B D U S D V E N O X A P O C
D T T E S N S N G N I L D R I G S
JOIN THE MOVEMENT: nationalMSsociety.org
I T R R M S N I T T P S L V T T P
X P E E P L A L B I E X I C L P E
E A V S S E N B M U N N O X U N O
P B N N E S V R E D T L E B M S I
• AVONEX • BETASERON • BLINDNESS • CEREBROSPINAL • CIS • COGNITIVE • COPAXONE • DMD • EXACERBATIONS • GAIT • GIRDLING • LESIONS • MRI • MULTIPLE SCLEROSIS
• MYELIN • NERVE • NUMBNESS • PAIN • PPMS • PREDNISONE • PRMS • REBIF • RRMS • SOLUMEDROL • SPMS • STRESS • SYMPTOM • TYSABRI • VEP • VERTIGO
RESEARCH
WHERE WE STAND IN RESEARCH: CHALLENGES & OPPORTUNITIES BY JOHN R. RICHERT, MD There has never been a more exciting time in MS research than now. How are we planning to maintain critical discovery in such a challenging economic environment?
for small-scale clinical trials to test the safety of cell therapy. These are examples of strategies to Reverse the Damage. • The definitive scan for all common MS-related genes being performed by the International MS Genetics Consortium promises a wealth of data. This international collaboration launched by Society funding has the potential to help us find ways to End MS Forever. And finally, we are prioritizing our spending to focus on what’s most important. Our choices-which we believe will be temporary-- include:
First, we are moving ahead. This year alone, we’re providing over $33.5 million to support 345 new and ongoing projects in our core research portfolio, plus $1.5 million for Fast Forward, our drug development subsidiary, which is also attracting its own new funding streams. Thanks to the efforts of our MS activists, an additional $5 million has been specifically set aside for MS research out of the 2009 Department of Defense budget.
• To continue to fund our discovery research portfolio and fellowships at reduced levels.
Second, we have three clear research goals — Stop MS, Reverse the Damage, and End MS Forever. Here are some exciting projects making headway in our three-pronged approach:
We are poised to make quantum leaps forward. Exciting new technologies, like gene chips, proteomics, and new imaging techniques are allowing scientists to visit age-old questions about MS in new ways. Now more than ever, we need the flexibility and resources to pursue the most promising leads.
• Our portfolio of projects focusing on immune aspects of MS, in particular the large-scale clinical trial of a pregnancy hormone, estriol, and Fast Forward’s recent investments in promising immune-modulating molecules are opening up new avenues to Stop MS. • Our research on rehabilitation and health care delivery, and our four international teams working on nervous system protection and repair (funded by the Promise: 2010 campaign) are making tremendous progress, including plans
• To place some research award programs on hold. We hope that the reduction will be of short duration. Should it become necessary to continue on this path, we know that some established researchers and some promising young scientists will abandon MS to move into areas where funding is more plentiful. We have to do everything possible to keep them in the MS field.
Each of us plays a crucial role in fueling MS research and ensuring that the brightest minds continue to pursue the answers that we so anxiously await. Now is the time when each of us must take stock of our own priorities and ask, “What more can I do?” and “Who else do I know who could help?” Please act now! TOLL FREE NUMBER 1 800 344 4867
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(800) 344-4867
PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY Contact Us 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 © 2009 A quarterly newsletter published by the National Multiple Sclerosis Society, Gateway Area Chapter. Chapter President • Phyllis Robsham Newsletter Editor • Joe Cavato Contributors Lynda Baris Beth Norviel Joe Cavato Rick Rovak Gary Deabler Kathi Taylor Blake Fuhler Kimber Wilcox Eileen Gandt Robert Williams Dr. Robert Naismith Lisa Wolk Danica Neale 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 PRESISDENT
A LETTER FROM THE PRESIDENT PHYLLIS ROBSHAM
I want to wish you and your family a safe and happy holiday season. It is hard to believe that we are getting ready to ring in 2010! I hope it brings health and happiness to everyone. With the New Year come new goals, new initiatives and new visions of a world free of MS. Please look through this issue and learn of all the ways that you can join the movement with us in 2010. Whether you have five minutes, a day, a week or more to dedicate to the Chapter, there is something for you that will ultimately help us reach our goal of helping the more than 6,300 people in our area living with multiple sclerosis every day. Each of you has tremendous talents, resources and dedication that could help us move one step closer to a cure. Call us today to find out how you can help. Thinking back over the past year, I am thankful for the volunteers who so generously gave of their time, our walkers and cyclists to get us closer to a cure. Please tell someone about your experience with the Society and invite someone to join you. If each of us would have one person join us in the movement, just think how much more we can accomplish. Take time to relax and enjoy family and friends this season, and I look forward to seeing you in the New Year!
happenings “Keep S’myelin” Connects With Children On Their Level
“Keep S’myelin” is a free, colorful, engaging, informative, and reassuring quarterly newsletter to help children and their parents talk and learn about MS together. Each issue is filled with stories and letters from other children whose parents have MS, interviews, games, and activities that highlight a specific topic related to the disease as well as a special section just for parents. Jennifer Reid, diagnosed with MS in 2007, reflects on how helpful the newsletter has been for her two children: Jordan (now 11) and Chris (almost 9). “They both tell their friends what the disease is. The simple definitions from Keep S’myelin are very effective-they can explain it very well,” Jennifer said. “It’s not a one-time book. They both look forward to getting it in the mail. My daughter Jordan is a writer and because of the newsletter she now talks a lot about her fears. My son Chris was very angry at the disease and even more when he first saw my wheelchair. He hated it. But after understanding more about the disease and my wheelchair from the newsletter, I began to notice his anger subsiding. The information that “Keep S’myelin” provides has allowed them to understand the disease just as well as any adult.”
HAPPENINGS
Multiple sclerosis is hard enough to understand for an adult; imagine how difficult it must be for a child to hear from a parent “I have MS.” That’s what the “Keep S’myelin” newsletter is all about – trying to help children understand MS and what living with it is like.
Jennifer Reid appreciates what her children Chris (left) and Jordan (right) have learned from the monthly Keep S’myelin publication that is geared to help children understand MS. While Jennifer understands the effect this disease can have on children, she believes that every parent who has MS and young children should get “Keep S’Myelin.”
ISSUE
A NEWSL
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ETTER
FOR KID SA
BOUT M
ULTIPLE
ECIAL
SIS
Monkeys, horses, cats, and pigs have all been trained to perform helpful tasks! They can be trained to pick things up off the floor, bring things (such as shoes or a purse), give support while walking with their owners, open and close doors, and be loving companions.
Some peop helpers. A le with MS have called a ca special type of smmonkeys as to help its puchin monkey ca all monkey n owner do many tasksbe trained .
1
While getting your children to understand your diagnosis of MS is ongoing, ”Keep S’myelin” is a resource that can assist you along the way. For more information on how to receive “Keep S’myelin,” please contact the Chapter at 1-800344-4867 or email keepsmyelin@nmss.org. 17
HELP
®
SCLERO
“This is something that the parent and child can do together,” Jennifer said. “There’s a lot of information in there and everyone with MS and kids should have it. This is a publication that is not overwhelming with information. It’s about education and it’s about fun.”
www.gatewaymssociety.org
#24/ SP
Gateway Area Chapter
Mark Your Calendar for Spring Rendezvous!
HAPPENINGS
Take one weekend to relax and have fun with other couples living with MS. Spring Rendezvous 2010 will take place May1-2 at the Pere Marquette Lodge in Grafton, Illinois. Early registration (before April 12) is $60 per person. Regular registration is $70 per person. The Pere Marquette Lodge is located in the 8,000acre Pere Marquette State Park, overlooking the Illinois River. Built in the 1930s and continually maintained, the lodge combines rustic charm with modern amenities, all just 45 minutes from St. Louis.
Spring Rendezvous Registration [ ]
May 1-2 Early registration (by April 12) is $60 per person. Regular registration is $70 per person. Must be 21 to attend.
Name_____________________________ Address____________________________ City/State/Zip________________________
Guests may choose to enjoy a variety of activities including: g Games g Swimming g Arts & Crafts g Massage g Guest Speakers
Home phone_________________________
A limited number of fee waivers are available for program and/or accessible transportation. For fee waiver details, please call Allison at 314-446-4184.
Do you prefer a vegetarian meal?_ ___________
For more information, questions, or to RSVP, contact the Chapter’s office at 314-781-9020 or 1-800-344-4867. This program fills up quickly, so be sure to register early!
Work phone_ ________________________ E-mail_____________________________
Payment Information ( ) Fee waiver requested ( ) Check enclosed payable to MS Society ( ) Visa ( ) MasterCard ( ) Discover Card # _ ___________________________ Expiration Date:_______________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440
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1.800.344.4867
happenings Providing Quality Long-Term Care for People with MS Wednesday, March 31, 2010 2-6 p.m.
HAPPENINGS
All healthcare providers are invited to learn more about caring for people living with multiple sclerosis in long-term care settings. This continuing education program will be held on the campus of the University of Kansas Medical Center in Kansas City and broadcast simultaneously by Interactive Televideo (ITV) to sites across Kansas and Missouri. Please contact us at the number below for a preferred site. Sites include: St. Louis, Columbia, MO; Cape Girardeau, MO and Rolla, MO. Learning Objectives: At the conclusion of the program participants will be able to: g Understand the basics related to a diagnosis of multiple sclerosis g Describe the range of symptoms associated with multiple sclerosis g Learn about the various disease-modifying therapies currently available to people with MS, as well as steroid treatment for exacerbations g Describe methods and treatments for addressing common symptoms associated with multiple sclerosis g Understand the impact on both the person and family beyond the diagnosis of MS g Describe the importance of rehabilitation and wellness programs to address symptoms such as weakness and spasticity g Explain what MS Society resources are available to help
Co-sponsored by the Mid America and Gateway Area Chapters of the National MS Society and by the Central Plains Geriatric Education Center at the University of Kansas Medical Center. Funded in part by the Bureau of Health Professions, Health Resources and Services Administration (HRSA), and Department of Health and Human Services (DHHS) Registration materials will be available in early 2010, but feel free to contact us now if you’d like more information or wish to inquire about ITV sites: CONTACT US Call: (913) 588-1464 Email: gec@kumc.edu
www.gatewaymssociety.org
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Gateway Area Chapter
Shape up with the Fitness MS Program
HAPPENINGS
TWO LOCATIONS St. Louis, MO or Columbia, MO ST. LOUIS, MO The Rehabilitation Institute of St. Louis 4455 Duncan Ave. St. Louis, MO 63110 March 13, 2010 9 a.m. – 4 p.m.
COLUMBIA, MO Howard A Rusk Rehabilitation Center 315 Bus. Loop 70 West Columbia MO, 65203 March 13, 2010 9 a.m. – 4 p.m.
PROGRAM INCLUDES: g Individual screening appointments with a physical and occupational therapist g Strength assessment g Balance assessment g Activity assessment g Mobility device assessment g Range of motion tests g Various health screenings g Opportunity to meet with a variety of healthcare disciplines g Opportunity to ask specific health and wellness questions g A continental breakfast or afternoon snacks g Chances to learn about more of the Chapter’s wellness programs and community wellness resources Cost: $10
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Fitness MS Registration [ ]
St. Louis, MO The Rehabilitation Institute of St. Louis March 13, 2010
[ ]
Columbia, MO Howard A Rusk Rehabilitation Center March 13, 2010
Name_______________________________ Address______________________________ City/State/Zip__________________________ Home phone___________________________ Work phone_ __________________________ E-mail_ _____________________________ Payment Information ( ) Fee waiver requested ( ) Check enclosed payable to MS Society ( ) Visa ( ) MasterCard ( ) Discover 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.
1.800.344.4867
happenings Wellness Network 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.
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 visit our website 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.
Please mark the sessions in which you would like to participate:
[ ]
Tai Chi for MS Thursday, December 17, 2009, 7-8 p.m.
[ ]
Therapeutic horseback riding Thursday, January 28, 2010, 7-8 p.m.
[ ]
Personal training and MS (Feb. 25) Thursday, February 25, 2010, 7-8 p.m.
[ ]
How physical therapy can help Thursday, March 25, 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
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HAPPENINGS
Upcoming topics include: • Tai Chi for MS (December 17) • Therapeutic horseback riding (January 28) • Personal training and MS (February 25) • How physical therapy can help (March 25)
Wellness Network 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
3rd Monday, 6 pm
New London Poplar Bluff St. Charles West Plains
2nd Monday, 7 pm 2nd Sunday, 2 pm 3rd Sunday, 3pm
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 Room 100 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 Hardees Restaurant at Mid Rivers Mall Dr. and Jim (636) 940-1521 Mexico Rd.
3rd Wednesday, 5 pm
Ozark Medical Ctr. Shaw Medical Bldg. 2nd Fl. Charline (417) 469-1068 909 Kentucky St., West Plains, MO 65775 Sally (417) 469-4842
1st Thursday, 7pm 2nd Saturday 1:30pm 2nd Tuesday, 7 pm
Weber Road Library Linda (314) 544-5623 4444 Weber Rd, St. Louis, MO 63123 St. John Rehab Hospital, 14561 North Outer Kevin (314) 841-3755 Hwy 40, St. Louis, MO 63017 Living Word United Methodist Church Walt (636) 256-9171 17315 Manchester Rd., Wildwood, MO 63038 Mary (314) 542-9303 NMSS Office Gateway Area Chapter Kidsho4@swbell.net 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Michelle (636) 447-5407
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 22
1st Saturday, 10 am 3rd Tuesday of each month 7pm-9pm 2nd Sunday, 2:30pm
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 Call for Dates
Gateway Regional Medical Ctr, Pascal Hall 2100 Madison Ave, Granite City, IL 62040
Litchfield
4th Tuesday, 6:30 pm
Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056
Metro East
Dec. 9, 7 pm Feb. 23, 7 pm
Mt. Vernon
Call for Dates
Southern Illinois
2nd Tuesday, 5pm
LINC, Inc. 120 East A Street, Belleville, IL 62220 Faith Lutheran Church 1104 N. 42nd St. Mt. Vernon, IL 62864 Heartland Regional-Medical Center Classroom #2 3333 West DeYoung, Marion, IL 62959
Group is looking for a new leader. Please Beth (618) 447-5456 contact Allison at (800) 344-4867. Susan (217) 324-7106 susie57@consolidated.net Ruth (217) 999-8924 tuba66@frontier.net Diane (618) 235-8823 Earhart500@aol.com Terri (618) 242-8448 Robert (618) 983-0321 Lisa (618) 983-0443
SPECIALIZED GROUPS Men’s Chat MS Fun, Friends & Food Veterans with MS CarePartner and Family Group
Last Tuesday of the Telephone group month, 7 pm David C. Pratt Cancer Center Feb. 2 St. John’s Mercy Medical Center 6pm 607 S. New Ballas Rd., St. Louis, MO 63147 2nd Wednesday, Veterans Admin. Medical Center 1 Jefferson 10 am Barracks Dr., St. Louis, MO 63125 3rd Wednesday, 6:30 pm
Joe S. jsalacki@sbcglobal.net Michelle (314) 251-6400 Debbie (636) 579-0264 debrafriends@hotmail.com Penny or Patti (314) 652-4100 ext. 4523 patricia.noonan2@med.va.gov
NMSS Office Gateway Area Chapter Allison (800) 344-4867 1867 Lackland Hill Parkway, St. Louis, MO 63146 allison.harper@gatewaymssociety.org Change from 7pm to 6:30pm
Talk MS Group Open House Your local Talk MS group is hosting an open house 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 the programs and services offered by the Chapter. There is no fee to attend but you must register, so RSVP today at 1-800-344-4867. Feel free to tell a friend of bring a guest.
Upcoming Talk MS Group Open House Schedule: West County January 12, 2010 Southern Illinois February 9, 2010 Cape Girardeau March 20, 2010
All Talk MS Group Open Houses will take place at the same location as regular group meetings. Please review the Talk MS listing on Page 22 and above to learn more. www.gatewaymssociety.org
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HAPPENINGS
Granite City
HAPPENINGS
Gateway Area Chapter
Chapter Calendar
SAVE THE DATES!
DECEMBER 2009
FEBRUARY 2010
10
8 11
Join us for Research MS in the Lake of the Ozarks, MO and in Marion, IL on April 17.
14 17
New Connections Social Gathering, North County, St. Louis, MO Midwest Teleconference Series Wellness Network
JANUARY 2010 11 12 28
Midwest Teleconference Series Talk MS Open House, West County, MO Wellness Network
16 17 25
Midwest Teleconference Series New Connections Social Gathering, Columbia, MO Missouri Legislative Action Day Missouri Legislative Action Day Wellness Network
MARCH 2010 8 11 13 13 20 25
Midwest Teleconference Series New Connections Social Gathering, Cape Girardeau, MO Fitness MS – Columbia, MO Fitness MS – St. Louis, MO Talk MS Open House, Cape Girardeau, MO Wellness Network
Tell your family to keep May 15th open for Family Evening at Grant’s Farm.
In need of a clean slate with your utility bills?
AmerenUE Clean Slate is a voluntary, $3 million initiative that began July 1, 2009 to allow AmerenUE Missouri electric and natural gas residential customers to eliminate current and past due bills and get a fresh start in handling their utility programs. Do I qualify? If you have MS and have filled out a financial assistance program application you may qualify. How can I apply? Contact us at 1-800-344-4867 or fill out an application at www.gatewaymssociety.org g Programs & Services g Assistance g Financial Assistance Forms. How does it work? The program is administered through United Way agencies like the National MS Society. Each potential participant who is an active AmerenUE customer and hasn’t used Clean Slate money in the past 12 months may be eligible. 24
1.800.344.4867
Details and registration information coming soon! Go to www.gatewaymssociety.org.
Market Place Ad 2007 Bruno Scooter Lift - Excellent
condition; all electronic. Asking $800. Please contact Aida at aidayoussef1111@ yahoo.com or at 314-922-7757.
happenings New Connections
New Connections Registration
Come meet with other people who have been newly diagnosed with MS in the past two years or who have recently moved to the area.
Columbia, MO Thursday, February 11 Boone Tavern 811 East Walnut Street, Columbia, MO 65201 Time: 6-7 p.m. Registration Deadline: February 8, 2010 Cape Girardeau, MO Thursday, March 11 My Daddy’s Cheesecake Bakery and Café 265 S. Broadview. Cape Girardeau, MO 63702-0009 Time: 6-7 p.m. Registration Deadline: March 1, 2010 Have a round on us! The Chapter will provide the first round of drinks and treats for everyone. There is no fee to attend but you must register, so RSVP today at 1-800344-4867. Feel free to tell a friend or bring a guest.
Help the MS Society G
GREEN
Would you prefer to receive our MS Connection in your inbox rather than your mailbox? Sign up today for an e-Newsletter by e-mailing the Chapter at gogreen@gatewaymssociety.org, and your name will be added to our cyber list. Thanks for helping us save printing, postage, and trees
[ ]
Columbia, MO Thursday, February 11
[ ]
Cape Girardeau, MO Thursday, March 11
HAPPENINGS
Chapter staff will be attending to let you know what the National MS Society does and how it can help.
Please mark which event you would like to attend:
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 Calendar” to choose the program you would like to attend.
www.gatewaymssociety.org
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Gateway Area Chapter
HAPPENINGS
MS Aquatics
METRO AREA
Wellbridge Athletic Club –( Clayton) Contact: Susan (314) 746-1500
Carondelet Park Rec Plex Contact: Shannon (314) 768-9622
Wellbridge Athletic Club – (Town & Country) Contact: Susan (636) 207-3000
Center of Clayton Contact: Diane (314) 290-8572
MID MISSOURI
Bridgeton Community Center Contact: Cole (314) 739-5599
Chesterfield JCC Contact: Fanchon (314) 432-5700 x3157
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 the United Way of Greater St. Louis. 26
Emerson Family YMCA (North County) Contact: Georgia/Chris (314) 521-1822 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: Kay W. (636) 928-1928 The Pointe at Ballwin Commons Contact: Susie (636) 227-8950 Washington Four Rivers Family YMCA Contact: Ann (636) 239-5704
1.800.344.4867
Columbia Activity & Recreation Center Contact: Laurie (573) 874-7460 Jefferson City YMCA Contact: Pat G. (573) 761-9021 Mexico Family YMCA Contact: Consuelo (573) 581-1540 Longbranch YMCA (Classes taught at the Comfort Inn pool) Contact: Martha M. (660) 385-1818
SOUTHERN AND METRO ILLINOIS
John A. Logan College Contact: Chris G. (618) 985-3741 ext. 8504 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
happenings
Yoga Sites ST. LOUIS:
SOUTHEAST MISSOURI
Elm Street Yoga 904 Elm St, Suite 210, Columbia, MO 65201 www.elmstreetyoga.com Tuesdays, 1:15 - 2:15 p.m. Thursdays, 4:30 - 5:30 p.m. 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 & SOUTHERN ILLINOIS
Yoga St. Louis Iyengar Yoga Class 3305 Jamieson Ave. St. Louis MO 63139 Tuesdays, 4:30 – 6 p.m. (Gentle Yoga Class) Call: Kerry 1-800-344-4867
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
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 Dec. 29 - Feb. 16 and Feb. 23 – April 13 5:30-6:30 p.m. (Beginner) 7-8 p.m. (Gentle) Thursdays Dec. 31 – Feb. 18 and Feb. 25 – April 15 9:30-10:30 a.m. (Beginner)
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.
www.gatewaymssociety.org
HAPPENINGS
Olivette Community Center 9723 Grandview Drive NE LOCATWI ! St. Louis, MO 63132 ON Cost: $10/ class Call: (314) 781-9020 or 1-800-344-4867 to register. Call 314-991-1249 for location information. 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 help 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 27
Gateway Area Chapter
HAPPENINGS
LIVING WITH MS
THIS WAY TO A HEALTHY, HAPPY MOUTH We all know good dental care prevents infection, promotes better nutrition and keeps your smile happy. Regular brushing, flossing and visits to the dentist can even help forestall expensive future procedures, like root canals. But, OK, brushing and flossing can be difficult if you experience numbness, spasticity, tremor or fatigue. It may be the last thing on your mind to schedule your twice-a-year cleaning and dental exam with so many other medical appointments to handle. But don’t give in. Here are a few things you can do. 28
• Get a grip with tooth “aides.” Ask an occupational therapist about electric toothbrushes, or toothbrushes with a built up or extended handle. You can also try wrapping the handle with a washcloth or sliding it into a tennis ball with a slit cut into it. Weighted toothbrushes may help with tremor. Visit abledata. com some examples, plus a few other items such as one-handed toothpaste dispensers. • Save energy for the important things—like flossing. There are easyto-use flossing “swords” available in drugstores so the job can be done onehanded. Multitask—floss while watching television or in bed. If you’re too tired at night, floss in the morning. Before sleep is preferable, but any flossing is better than no flossing at all. If standing at the sink is tiring, sit down to brush and floss. You can also try asking a family member to help. Longhandled toothbrushes can be held by a second person. Schedule dental appointments for the time of day when you have the most energy.
1.800.344.4867
• Keep your powder dry and your mouth moist. Some medications used to treat MS symptoms can cause dry mouth, which in turn can lead to gum disease or mouth infections. Talk to your healthcare providers. They may be able to adjust the dose or even change the medication. If not, ask about a prescription for an oral rinse or a recommendation for an over-the-counter remedy. You can also try squirting small amounts of lemon juice into your mouth or sucking on sugar-free lemon candies. Drink plenty of water— staying hydrated will help. Use a humidifier at night and avoid alcohol, tobacco and caffeine.
THE MERCURY QUESTION Very little evidence exists to link mercury-containing amalgam dental fillings and MS. And to have dental fillings removed or replaced is expensive. However, if you are worried about having new amalgam fillings, ask your dentist about alternatives, such as porcelain.
happenings Midwest Teleconference Series Mark your calendars for every second Monday of the month for the Midwest Teleconference Series. The series topics from December through March are:
Speaker: Dr. Robert Naismith, John L. Trotter MS Center Date: December 14, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of latest information on oral medications.
Updates in MS Research, Genetics and Clinical Trials
Speaker: Dr. Patricia O’Looney, V.P. of Biomedical Research, National MS Society Date: January 11, 2010 Time: 7-8 p.m. Objectives: Increase knowledge of latest information on MS genetics and clinical trials.
Men’s Issues & MS
Speaker: Dr. Randall T. Schapiro, Medical Director, The Schapiro Center for MS at the Minneapolis Clinic of Neurology Date: February 8, 2010 Time: 7-8 p.m. Objectives: Increase knowledge of issues pertinent to men living with MS.
Nutrition & MS
Speaker: Marla Brodsky, Private Practice Nutritionist Date: March 8, 2010 Time: 7-8 p.m. Objectives: Increase knowledge of the best nutrition for people living with MS.
Teleconference Registration Please mark the sessions in which you would like to participate:
[ ]
Oral Medication Update Monday, December 14, 7-8 p.m.
[ ]
Updates in MS Research, Genetics and Clinical Trials Monday, January 11, 7-8 p.m.
[ ]
Men’s Issues & MS Monday, February 8, 7-8 p.m.
[ ]
Nutrition & MS Monday, March 8, 7-8 p.m.
HAPPENINGS
Oral Medication Update
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.
This program sponsored by Biogen Idec. www.gatewaymssociety.org
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Gateway Area Chapter
HAPPENINGS
What Should I Do About the Flu? REGULAR FLU SHOT As in previous years, the National MS Society recommends a regular flu shot as a safe and effective vaccination for people with MS. The flu shot—which is a de-activated or “killed” vaccine— can safely be taken by individuals who are on any of the MS disease-modifying medications. FLUMIST In 2003, the FDA approved a flu vaccine nasal spray. According to Dr. Aaron Miller, the Society’s Chief Medical Officer, FluMist—which is a live, weakened vaccine—is not recommended for use by people with MS, and should specifically be avoided by any person with MS who is on an immunosuppressive medication such as mitoxantrone (Novantrone®), cyclophosphamide (Cytoxan®), azathioprine (Imuran®), or methotrexate. H1N1 On September 15, the FDA approved four vaccines for the H1N1 flu virus. Three of the H1N1 vaccines are de-activated or “killed” vaccines that are administered by injection. These deactivated vaccines are considered safe for people with MS. One is a live, attenuated vaccine that is administered by nasal spray. This live, nasal spray vaccine, which will be the first vaccine to become generally available, should be avoided by individuals with MS. Though people with MS are not considered part of the “high-risk” group for the flu vaccination, the flu virus (like any other virus) can precipitate MS exacerbations. A person with advanced MS or someone with reduced pulmonary function or difficulty with breathing is considered at risk for complications and a good candidate for the H1N1 30
vaccine. We recommend people talk with their MS doctor to determine if they are a good candidate for the de-activated H1N1 vaccine. In summary: g People with MS should consult with their physician about obtaining a regular flu shot as soon as possible. g They should also discuss with their neurologist whether they should get the de-activated H1N1 vaccination because (1) catching the flu would put them at greater risk of an exacerbation, or (2) their MS symptoms are severe enough to put them at risk for flu complications. g The FluMist nasal spray vaccine and the live, attenuated nasal spray version of the H1N1 are not recommended for people with MS.
1.800.344.4867
happenings Worried About Winter Heating Bills? Check Local Resources
As the seasons begin to change, we are reminded that the cold days of winter will soon be here. Now is the best time to prepare for colder weather and rising heating costs. Your local Community Action Agency offers assistance to low-income households seeking assistance with weatherization and utility assistance.
HOME WEATHERIZATION g Weatherizing your home can create a noticeable difference in your heating bill, as well as making your home feel more comfortable. g Most Community Action Agencies offer a variety of home weatherization services from sealing drafty windows and doors to insulating water pipes. • Contact your Community Action Agency today to see if a weatherization program is offered in your area.
Here are just a few of the programs they offer: LIHEAP (Low-Income Home Energy Assistance Program) g Low-income households (income below 150% of the federal poverty guidelines) may qualify for one grant per year, and must reapply annually. g You do not need a disconnection notice to apply. g Applications are accepted through March 31, 2010, but you are strongly encouraged to apply as early as possible. Call your Community Action Agency today for an application.
Here are some easy ways to find your local Community Action Agency: Missouri http://communityaction.org Illinois http://www.ildceo.net or (800) 252-8643 For additional help in finding your Community Action Agency, contact the United Way at (800) 427-4626.
www.gatewaymssociety.org
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HAPPENINGS
ECIP (Energy Crisis Intervention Program) g You must first receive a LIHEAP grant in order to apply for an ECIP grant (you can apply for both grants simultaneously). g You must have a disconnection notice from your utility company. g Contact your Community Action Agency to apply for an ECIP grant.
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Permit No. 3914 St. Louis, MO
Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146 RETURN SERVICE REQUESTED
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 Keep S’Myelin . . . . . . . . . . . . . . . . . . . . 17 Spring Rendezvous. . . . . . . . . . . . . . . . 18 Long-Term Care. . . . . . . . . . . . . . . . . . . 19 Fitness MS . . . . . . . . . . . . . . . . . . . . . . . 20 Wellness Network. . . . . . . . . . . . . . . . . 21 Talk MS Groups . . . . . . . . . . . . . . . . 22-23 Chapter Calendar. . . . . . . . . . . . . . . . . . 24 New Connections . . . . . . . . . . . . . . . . . 25 Therapeutic Recreation. . . . . . . . . . 26-27 Living With MS . . . . . . . . . . . . . . . . . . . 28 Midwest Teleconference Series . . . . . . 29 Resource Center. . . . . . . . . . . . . . . . 30-31
With the new year right around the corner, it’s the perfect time to expand your horizons and try something new. Most New Year’s resolutions include getting more active. There is sure to be an MS Aquatics or Yoga site near you (pgs. 26-27). If you’re not sure about what activities would be right for you or can’t travel to a site, you can join the Wellness Network (pg. 21) from the comfort of your own home. If you’ve never participated in one of the Chapter’s teleconferences, you won’t want to miss the one on
December 14 with Dr. Robert Naismith on oral medications (Page 29). Also included in this issue of Happenings are resources on how to stay comfortable and healthy through the winter months. Inside are answers to your questions about H1N1 and the flu (pg. 30). If you or someone you know who has MS needs help with their bills during the winter there are several local resources (pg 31). We hope you enjoy this issue and have a very happy new year!
Your Source for Knowledge, Wellness, and Support
Winter 2010