MS Connection

MOVING TOWARD A WORLD FREE OF MS | SPRING • 2010

GATEWAY AREA CHAPTER

TIMEWORK

FATIGUE

MONEY

FAMILY

ANXIETY

OvercomingOBSTACLES

&

Staying Motivated

2 | JOIN THE MOVEMENT: nationalMSsociety.org

It seems like

everywhere we

look there can be

obstacles or hurdles

in the way of our

moving forward. It’s

hard to find time

to exercise or relax.

Sometimes it can be

difficult to balance

work and family. In

the recent economy

raising money can

be challenging.

When fatigue and

anxiety hit, it can be

a chore to do anything.

In this issue read about

how people in the

Chapter are staying

motivated and clearing

those hurdles.

FeaturesKEEP ON WALKING | 3Knese Family Team strolls through a decade of Walk MS

A LITTLE HELP FROM MY FRIENDS | 4Wellness Network helps to keep you moving through your exercise routine

SPEAKING OUT – EDUCATING OTHERS | 5Advocating begins at grassroots level with storytelling

SHINING STARS | 6-7Chapter honors its achievement award winners at Night of 1,000 Stars

A DIFFERENT APPROACH | 16Wii exercises mind and body from the comfort of your couch

ON THE COVERINSIDE THIS ISSUE

In Every IssueVOLUNTEER COLUMNS | 8-9Charlie Ries and Kathy Caveny share how they got involved with the Society and stay motivated

ASK THE PROFESSIONAL | 10Occupational Therapist Peggy Neufeld discusses ways to stay motivated

FROM THE BOARD | 11Michelle Keating has been a valued and dedicated member of our board for 15 years as well as team captain of one of our most successful Walk MS teams

GETTING TO KNOW US | 12There’s no off-season for our Development department

MS BRAIN GAMES | 13Exercise your mind with an MS crossword puzzle

CHAPTER NEWS BRIEFS | 14Read all about what’s going on in the Chapter

RESEARCH | 15Understanding “Benign MS”

FROM THE PRESIDENT | 18A letter from Chapter President Phyllis Robsham

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Night of 1000 StarsPAGE 6

Ask the Professional PAGE 10

From the BoardPAGE 11

MS Brain GamesPAGE 13

NEW!

CROSS WORD PUZZLE

THIS TEAM WAS MADE FOR WALKING

Suzan Knese has been participating in Walk MS for a decade raising nearly $25,000 in that time.

She never has problems staying motivated to fundraise or to get her Knese Family team, to lace up their shoes for Walk MS in Clayton each year. Suzan finds plenty of motivation every time she visits her neurologist.

“For me it’s a testament to all those people whose daily lives are affected by MS and the uncertainty and challenges that come with it,” Suzan said. “It’s for the people I see in the doctor’s office who are in wheelchairs and it’s just by a stroke of luck that I’m not. It’s an opportunity to give back and pay tribute to people who have been so affected. It’s a chance to raise money to find a better treatment and ultimately a cure for MS.”

Suzan was diagnosed with MS in 1999 shortly after having her second child, but she knew about MS long before that, as her friend’s mother lived with MS.

“From a very young age I was exposed to MS and its devastating effects,” Suzan said. “I saw her go through all the myriad of treatments from FDA-approved therapies to exploratory ones. I grew up with her and saw her go from using a cane, to a walker, and eventually to a motor scooter.”

Now, being a team captain for her Walk MS team is just something that Suzan does and she doesn’t consider stopping.

“The motivation for me is I know this is something that I made a commitment to that affects my family and me,” she said. “It’s part of who I am.”

Her fundraising philosophy is pretty simple – she just asks.

“I start out by thanking people for donating in the past and if they can only donate $10 to acknowledge what that $10

does,” Suzan said. “I explain how it feels to stand up and fall down or not being able to stand and the uncertainty that comes with MS. It’s about making it personal and having people understand that it’s something near and dear to my heart. I personally handwrite thank you notes to those who donate to me. I just want them to realize that I do appreciate what they do.”

Her approach certainly works as in 2009 she had her best fundraising year yet, with nearly $5,000 raised despite the difficult economy.

Suzan also appreciates her teammates, who include family and friends. She has used Walk MS as a bit of a reunion of sorts for her sorority from Southeast Missouri State University.

“I have a group of girls from my sorority who have been incredibly supportive in my walk,” Suzan. “I try to make it fun that the girls are getting back together. It’s become like an annual reunion. It’s a fun event.”

TOLL FREE NUMBER 1 800 344 4867 | 3

Suzan Knese and her team have been walking for a decade and are showing no signs of slowing down. Walk MS kicks off in April. Go to gatewaymswalk.org to find a walk near you!

DEVELOPMENT

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PROGRAMS

STRENGTH IN NUMBERS - NETWORK HELPS MOTIVATE ITS PARTICIPANTSEveryone knows the benefits of regular exercise. You feel better and have more energy. The trouble is sticking with an exercise regime, especially for someone living with multiple sclerosis with fatigue being such a common symptom.

Adrian Takir, diagnosed with MS in 1990, says every area of her life has been affected by the disease. Despite challenges, Adrian decided to get involved with the Chapter’s Wellness Network and now makes exercise an important part of her life. She began taking yoga classes seven years ago. Toni Kodner, a volunteer at the Society who also has MS, facilitates the Wellness Network and is moved by Adrian’s sheer determination when she shows up to class in a wheelchair. But to Adrian, it’s worth the extra effort.

“I have learned through persistence that the practice of yoga makes a difference in my life,” Adrian said. “In many ways without it I lose out physically and emotionally at the very least.”

She also participates in the Wellness Network’s seminars and other

events featuring health and exercise professionals. She is determined not to be viewed as different, but as someone who simply does things a little bit differently.

“I always told my daughter growing up that we were just like everyone else,” Adrian said. “Every family, each person has something or someone in their lives or a condition that makes it more difficult to be ‘regular’. Some are just more visible than others.”

Judy Dawson, a retired teacher and a voluntary educational surrogate, has also been involved with the Wellness Network since its beginning. Judy was diagnosed in 2004 but thinks she had the disease a few years before that. She first came into contact with the Chapter online and later attended Tai Chi classes. She now tries to stay as involved and motivated as she can and credits her exercise success to the on-going support system.

“Toni, our facilitator, has been so influential. Her calls and the Chapter’s e-mail reminders are very motivating,” Judy said. “My sister, Jeanne, who works at the fitness center that I joined, keeps me on track. I’ve also met someone in my stretch class who has MS and is another motivating influence.”

MS presents Judy with challenges every day but she continues to do as much as she can including

golfing with her husband, attending the theater and dining out. The Wellness Network has helped her have more control over her MS.

“I’m depending on the Wellness Network to keep me motivated to be the best that I can be,” she said.

It’s always easier and more fun to exercise in a group setting. See pages 28-29 for a listing of therapeutic recreation programs and page 30 for information on the Chapter’s Wellness Network.


ADVOCACY

COMPELLING STORIES HELP CREATE CHANGE Advocating for any cause can be a challenge. You have to get someone’s ear and make your story compelling. A strong memorable message sticks in the mind of a voter or government official and can help cause action in advocacy.

Chris Lepper, diagnosed with multiple sclerosis in 1997, has done just about everything for the Chapter. She’s been a Talk MS group leader, volunteered at Bike MS and Walk MS, been on the Speakers Bureau and served on the Government Relations Committee for about eight years.

While the challenge of advocating can get frustrating if a piece of legislature takes longer than expected to pass or doesn’t pass at all, Chris is motivated by knowing there are others with MS who need help.

“When I may get frustrated, when I don’t have the energy or want to take a break, I’ll get a phone call from somebody who is newly diagnosed looking for help or somebody in the Talk MS group is having a problem,” Chris said. “We’ll talk and I’ll hear what’s going on with them and that reenergizes me and helps me put things in perspective. When you can really see that some of what you’re doing is making a personal difference for somebody, that’s really rewarding. That helps as much as anything.”

Chris is familiar with advocacy as she is a grassroots coordinator with the Missouri Bankers Association. She keeps people informed about what legislative issues are important for bankers and gets them engaged in the process.

“One reason I was enthusiastic about getting involved in public policy is that I do grassroots and legislative work with my full-time job and it seemed like a good fit for me,” Chris said. “Since I spend Monday through Friday encouraging folks I work with to be involved in the political process and to speak up, it makes it very easy for me to see the value of that and to do that on behalf of people with MS.”

Sometimes the advocate’s work isn’t tangible in the form of obtaining government funds or getting a piece of legislature passed, but that doesn’t mean it’s not important. In fact one of the most crucial aspects of advocating that anyone with MS can do is to educate others.

“Nobody can tell the story like a person with a real connection to MS,” Chris said. “It’s important for people who have been touched by MS to talk to their elected officials. It’s important to explain to them what living with MS is all about and what public policy level people can do to give them a better quality of life. It’s important that we’re visible so when an issue arises that deals with disabilities or health care, that state legislators think of that person in their district who has MS. That personal connection is really important from the point of view of the legislator and we’re the ones who can tell our story most effectively.”

Chris Lepper knows that by simply telling her story she can help advocate for change.

Building relationships and educating legislators is key to creating change for people with disabilities.

EVENTS


CHAPTER HONORS ITS BRIGHTEST AT NIGHT OF A 1,000 STARS On January 21, the Chapter held its annual “Night of A Thousand Stars” Volunteer Recognition Dinner at the Sheraton Hotel at Westport Plaza Lakeside Chalet. Tom O’Neal, KTVI Fox 2 News anchor, served as emcee for the event. The Chapter honored its Annual Achievement Award Recipients, Pathligher Award Winners and Mission Possible Honorees.

2009 ANNUAL ACHIEVEMENT AWARDS

MOTHER OF THE YEAR MICHELLE LOWE

Michelle was diagnosed with MS at the young age of 23. She was fresh out of college, embarking on a new career and buying a house, in other words – just starting her life. Michelle worked full-time for many years as a project manager for a transportation company, and now is a full-time mom. In

addition to caring for her children, working as a volunteer in local schools’ reading programs, and volunteering at Bike MS, she has taken on the responsibility of heading up the Chapter’s Speakers Bureau Program.

FATHER OF THE YEAR CHIP STOCKELL

Chip’s wife Patty nominated him and she wrote: “Daily I witness him going about his life with progressive MS. He was formally diagnosed about four years ago, but had symptoms for seven years. Never ONCE has he complained, asked God why, or asked for help. Daily he goes in to run his company, Stockell Consulting, and returns home to be with his wife and two highly-energetic boys, ages 7 and 10. This is the daddy they have always known. He is the epitome of grace, acceptance and love. He is a shining example of what someone can continue to accomplish with MS, and with an upbeat spirit.”

UNSUNG HEROES OF THE YEAR RICK WEINSTEIN AND DON BAIRD

Rick Weinstein has been dedicated to the cause and Bike MS for five years. He has organized a Bike MS team that is out there for the cause, not just because the members enjoy cycling. Rick has taken time to not only organize the highest fundraising team in 2009 but takes a personal interest in each one of the team members. He makes sure all riders, slow or fast are safe, comfortable, not left behind and encouraged to become better riders in the process. Rick’s cheerleading and determination encourage everyone to ride and not to view fund raising as a daunting task.

Don Baird has been the captain of the Team Kaldi’s Bike MS team for seven years. During that

EVENTS


time, he led the effort that has built Team Kaldi’s from a team of about a dozen riders raising less than $10,000 to a group of more than 120 riders raising well over $100,000 per year. He is the driving force behind one of the ride’s most accomplished and most respected teams. Under Don’s leadership, the team became a “friends and family” team on which new friends were always welcome.

INDIVIDUAL OF THE YEAR GAIL CAMERON

Gail Cameron is a dedicated and essential volunteer who lends to the success of the Chapter’s programs and events. She has been living with MS since 2002. In 2008, Gail volunteered as the Chapter’s family social program volunteer for Central Missouri to coordinate the Family Evening in Columbia. In 2009, she secured over $800 worth of in-kind donations for the event as well as entertainment. Also, from 2008 to 2009, the event doubled in attendance which Gail played a strong role in by identifying a new location, ensuring the site was accessible, supporting staff in the logistics of planning for the event, and spreading the word about the program in the community.

CAREGIVER OF THE YEAR CHESTER JAKUBOWICZ

Chester was nominated by David Sapp, his domestic partner since 1975. In his nomination, David wrote: “Chester’s entire day is spent in care of my needs with very little, if any, time for himself.” Chester does everything for David from dressing him, to feeding him, to taking care of all of his daily needs. “The most amazing thing that Chester has done for me is that he has given up his own life so that I can continue to lead a fulfilling and happy life, which I do. Chester is truly an angel and there are really no words that I can use to describe how much he does for me each and every hour of each and every day.”

EMPLOYER OF THE YEAR MCCARTHY BUILDING COMPANY

After Chris Becklenberg was diagnosed with MS, folks at McCarthy went out of their way to help find a more stable environment in which for him to work and at the same time kept his condition private. Chris wrote in

his nomination: “Compassion for me and what I was going through was very high and I was treated as a normal employee. I have been lucky with my condition and I can still function in a certain work environment. Having been with McCarthy for less than two years I didn’t know what to expect, so I was greatly surprised at how well I was treated.”

PATHLIGHTER AWARDS

Pathlighter Awards honor volunteers who have provided at least three years of service to the Chapter. These extraordinary volunteers are some of the finest examples of true stars who are blazing a path to create a world free of MS.

ADMINISTRATIVE MICHAEL SMITH & ALICE DOUTHIT

ADVOCACY DR. THY & TIM HUSKEY

COMMUNITY SANDY HOFFMAN

DEVELOPMENT JIM BLAIRHEALTHCARE PROFESSIONAL PENNY JAMES

PROGRAMS DEBBY RHODES


Years ago when I was volunteering answering the helpline at the Chapter, I was speaking with someone who was a bit down. I told him I wanted to help him feel better so I said “between now and next Friday, take the time, whether it’s picking up the phone or knocking on the door of a neighbor, to do something for somebody. I guarantee you that person will feel better and you’ll feel better.”

That’s been my philosophy and it’s how I have stayed motivated year after year volunteering for the Chapter and participating in Bike MS for more than 20 years.

I enjoy touching people’s lives and the Chapter has given me the opportunity to do just that. I got involved with the Chapter through Bike MS simply because it’s a tremendously fun ride and I enjoy it. I don’t have MS and didn’t have any previous connection to it.

After riding a couple of years I got more involved by working on the bike volunteer committee and answering the phones on the helpline for about five years when it was done locally.

When I started I couldn’t spell multiple sclerosis but by talking

to people living with MS every week, I learned more about MS and how it affects people. That motivated me to become more involved and to raise more money. I learned that the more knowledge you obtain about the disease or organization for which you are volunteering, the more intense you will be about your efforts.

Every year I send out a letter to about 400 friends, family and acquaintances to raise money for Bike MS. After hand addressing about 6,000 letters and raising more than $260,000 through my Bike MS rides over the years, I still enjoy doing it. Why else would I be involved with the MS Society if I didn’t enjoy what I do for them?

There’s another simple philosophy and if you’ve been on the bike ride, you’ve heard it – Act Now - Help Someone (along with Hip Hip Hoorays!). Believe it or not that’s how I live and that’s how I think a lot of people need to become involved. Any time you help somebody, it’s going to make you feel good. I think it’s a great way to live.

VOLUNTEER

CHARLIE RIESBIKE MS PARTICIPANT ‘RIDER 281’HELPLINE VOLUNTEERBIKE COMMITTEE VOLUNTEERSPEAKERS BUREAU VOLUNTEER

THROUGH THE EYES

“There’s another simple philosophy and if you’ve been on the bike ride, you’ve heard it – Act Now - Help Someone (along with Hip Hip Hoorays!). Believe it or not that’s how I live and that’s how I think a lot of people need to become involved. Any time you help somebody, it’s going to make you feel good. I think it’s a great way to live.”


DONOR

KATHY CAVENY DELIVER A SMILE VOLUNTEERWALK MS PARTICIPANT

I joined the movement and became involved with the National MS Society in the fall of 2006 when I was diagnosed with relapsing-remitting MS. I participated in a research study with the John L. Trotter MS Center at Washington University which made me very aware of the research being done today for MS.

I decided then I was not going to wait around to see what was going to happen to me but to fight the only way I knew, through raising money for MS research. I really try to stay positive at all times. I never live in the past or wonder about my future but just enjoy my life today! Even though giving myself shots everyday makes me think of my MS on a daily basis, I try to think of myself as normal!

In 2006 I started my own team for Walk MS in Godfrey, IL. The first year I had over 65 walkers. My

team, Team Bit O’Irish, has raised the most money and been one of the largest teams the last three years at Walk MS in Godfrey. I am so proud of each and every one who got involved with our team. After the first Walk MS experience I thought that there must be more I can do. It was then I learned about the Deliver A Smile program. I contacted a Cub Scout pack, our church youth group, and decided to have my own “Friends Blanket Making Party.” We made more than 60 blankets that year and I’ve done it ever since.

Throughout the year people ask if I am going to make blankets again this year and my answer is always “YES!” The ladies from church helped this year and they overwhelmed me with their attendance and how eager they all were. Most were retired and stayed the entire time cutting and tying until the blankets were all finished. These women touched me emotionally when I saw, that despite their arthritis and having difficulty walking, they were all smiles in doing this task for someone they didn’t even know.

Since getting involved, I’ve wanted to do more and more. Last summer I wanted to do something different to raise money. I talked over a few ideas with my husband and friends. We came up with a pool-side wine tasting party with a tropical flare. I have always loved organizing parties with a theme so we came up with “The Last

Sip of Summer.” I had so many close friends donate food, time and money, not to mention my neighbor’s house and pool area! It was a great success raising more than $3,000.

This is how I stay motivated to go on each day. I keep my friends and family close and enjoy each minute I have with them. I have felt more love in the past three years since my diagnosis than I have my entire life. I guess I can say, in a way, I am even grateful for my MS.

VOLUNTEEROF VOLUNTEERS

DELIVER A SMILE

Twice a year, Chapter staff and volunteers make visits to individuals living with MS and deliver small, personalized gifts that have been specifically requested by the individuals. About 100 were delivered in December and we will deliver another 100 this July. If you know someone with MS who is homebound or living in a long-term care facility or would like to donate, please contact Diana Post at the Chapter at [email protected] or 1-800-344-4867.


ASK THE PROFESSIONALPATIENT QUESTION: How can I stay motivated to continue activities that I have enjoyed in the past or to learn new activities in ways that fit with my changing abilities from MS?

DID YOU KNOW THERE IS AN ART AND SCIENCE OF GETTING AND STAYING MOTIVATED? Research tells us that motivation comes from within, but people and places can also help by influencing your readiness to get involved and persist in activities. Since living with MS challenges confidence in taking part in favorite activities, it is important to think about your level of motivation. Staying motivated to be physically, mentally and socially active will promote health, life satisfaction and a sense of well-being.

Peggy Neufeld, Ph.D., OTR/L, FAOTA

Community Occupational Therapist

One way to change motivation for activities is to use the stages of change approach. In the early contemplative stage you may feel somewhat stuck, but you are willing to think about change. At this point, reflect on favorite pasttimes to clarify your values and priorities. Reach out to friends and family to discuss what you enjoy doing, any difficulties in those activities and begin to recognize how some obstacles can be analyzed and potentially changed. You may also find professional assistance helpful when contemplating your motivation and readiness for change to resume past or try new meaningful activities.

The next two stages in this approach are to prepare by making a plan of action, and then create goals and do what is needed to stay motivated and active. Creating an action plan includes finding times and situations that will feel easier to do activities that must be done differently than before. Explore activity options offered through the NMSS and other community resources. Set realistic goals and engage in activities that have the most meaning for

you to benefit from their motivating effect. Enhance the places in which you live, work and play so they energize and move you toward your goals.

Finally, know that a lapse into an unmotivated state of mind and inactivity is not uncommon, so be preventative. Create healthy rewards and incentives for yourself and share successes with others to motivate your continued involvement.

MS CONNECTION

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

CALL TO ACTION

TOLL FREE NUMBER 1 800 344 4867 | 11

Why did I join the movement? In 1981, I had been practicing as a nurse a few years when I developed numbness on my side. I was taking an exercise class at the time and figured it was just the result of something I did in class. It went away and about six weeks later I developed tingling in my hands and feet. At that point I realized something was not right. I remember quite well when I walked into the neurologist’s office and he said “What do you think could be wrong?” I said “I don’t know, maybe a brain tumor or MS.” He looked at me seriously and said “I think you have MS.” I will never forget the fear, grief, and anxiety I felt at that time.

I have been living with MS for more than 28 years, but that doesn’t stop me from making extraordinary efforts to find a cure for the disease as well as be a positive model of energy, perseverance, and determination for others with the disease.

Today, despite everyday challenges, including decreased mobility (I get around using a leg brace and a crutch and with the help of a motorized scooter), I continue my career certified in oncology and MS nursing.

In 1993, working as a nurse in cancer and health education at St. John’s, I started teaching self injection for MS treatment. Then I got more involved with a support group, and then as a speaker for the National MS Society and a pharmaceutical company.

By 1995, I began providing professional MS nursing telephone educational and emotional support while maintaining my position as a cancer nurse educator at St. John’s.

I joined the Board of Trustees in 1994. I have been involved with the Chapter in many MS programs, committees, advocacy efforts, and fundraising activities including Walk MS with my great team, Michelle’s Marchers.

The Society is committed to create a world free of world free of MS. It funds research, facilitates education and advocacy, and provides programs and services that help people with MS and their families move their lives forward. I continue my passion as a volunteer for the Society because I want to do something about MS now!

FROM THE BOARDMICHELLE KEATING, RN, OCN, MSCN NURSE EDUCATOR CANCER INFORMATION CENTER ST. JOHN’S MERCY MEDICAL CENTER

2010 BOARD OF TRUSTEES

Michelle Keating has been a board member for 15 years and her Clayton Walk MS Team, Michelle’s Marchers is always one of the top teams every year.


THERE’S NO OFF-SEASON FOR CHAPTER’S DEVELOPMENT STAFF During the cold winter months when riding a bike or going for a long walk may be the last thing on people’s minds, the Chapter’s Development Staff cultivates relationships with event participants and looks for ways to improve each event over the previous year.

The department has the task of ensuring the safety of nearly 10,000 walkers and cyclists during Bike MS, Challenge Walk MS and Walk MS. They also want to make each participant’s experience as fun and as rewarding as possible.

While this is no easy task, the Development department does have quite a bit of help from volunteers and team captains. Volunteers and participants drive these events and none of them would exist without their hard work and dedication! The Development Staff works with event team captains by offering incentive team weeks to help captains grow their team and their fundraising. Between team weeks, staff members maintain regular contact with each team captain. After events, staff members work with participants on post-event fundraising and prize securing.

Bike MS, Challenge Walk MS and Walk MS aren’t the only forms of fundraising. Corporate leaders who may not have a lot of time but are interested in fundraising can participate in the MS Corporate Achievers program. This six-week campaign is an easy and effective way to raise money and participants are featured in the St. Louis Business Journal and are provided with professional networking opportunities.

Every event ultimately supports the more than 6,300 people living with MS in our 90-county service area. Many participants dedicate their walks or rides to a person they know living with MS. For those participants who don’t have a direct connection to MS, we encourage people living with MS and event participants to develop partnerships through our Champions program. This program fosters relationships between participants and those living with MS in hopes that they will inspire each other. Each event also has a Champions tent where participants can meet and learn more about MS. We see many hugs and tears at these meetings as mutual respect and awe is communicated and marveled over. Each person is astonished at what the other person has gone through and many stories and laughs are also shared.

We are grateful to everyone who plays a role, big or small, in helping us accomplish our goals. We anticipate 3,300 cyclists, 6,000 walkers and 250 challenge walkers to raise more than $4 million this year. The Development Staff is also working on a new fundraising event called the Mud Run. Stay tuned for the inaugural event on May 8 and how the department is branching out to offer another unique opportunity to raise funds to support people living with MS.

GETTING TO KNOW US

The Chapter’s Development department includes (from left): Matt Jones, Erin Holtzclaw, Traci Buss, Angie Wiseman, Paula Eichholz, Lura January, Chariti Hoven and Randy Adler.

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TOLL FREE NUMBER 1 800 344 4867 | 13

MS BRAIN GAMES

DOWN2. MS medication should be taken

_________as directed

4. Another name for MS Advocates sent to lobby MS Legislation

5. Image Detecting Technology

6. Hand written _____ in a log, or reminders on Post-It ____ help people with cognitive issues

9. Relapsing Remitting MS

10. Central Nervous System

11. Multiple Sclerosis

12. What does the B in ABCR stand for

13. Where oral steroids are taken

15. Distorted, interrupted nerve impulses make MS

17. Always try to _____ happy thoughts

19. Another name for MS plaques or scarring

20. Visual Evoked Potential

24. Most people with MS should avoid too much _____ on a hot day

25. Common symptom of MS

27 Hand-written notes in a ______ help to remind

28. Disease Modifying Drug

ACROSS1. What does the A in ABCR stand for

5. Fatty substance that surrounds the nerve fiber

8. Spinning sensation

12. Part of the body MS does not affect

14. Secondary Progressive MS

16. Possible precipitant exacerbation trigger

18. Almost _____ of the answers for this puzzle can be found on the National MS Society website

21. Tapered oral steroid exacerbation treatment

22. Difficulty in walking is also called

23. Primary Relapsing MS

25. Primary Progressive MS

26. A symptom of Optic Nerve Neuritis

29. MS Belly Hug pain also known as

MS CROSS WORD PUZZLEMost of the answers can be found at the www.nationalmssociety.org website, Clinical Trials Handout, or the dictionary.

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NEWS BRIEFS

GET DIRTY FOR MSYou’ll never be this dirty for anything this good. That’s the motto of the MS Mud Run which will take place May 8 in St. Louis. If you’re looking for another challenge this is for you. The Mud Run is a 10K race with a series of boot camp-style obstacles that have been surrounded by mud. All of the fundraising contributions and a portion of the race proceeds are donated to the Chapter. The registration fee is $50 and the fundraising minimum is $100. For more information go to www.gatewaymssociety.org.

ELITE CYCLIST TO SPEAK AT WOMEN ON THE MOVE LUNCHEONAs a member of the US Cycling Team, Maureen Manley won a national cham-pionship, set a national record, earned a silver and two bronze medals at the Na-tional Champion-ships, competed in three World Championships and won a silver medal in the 1990 World Championships. Her career

came to an abrupt halt when she was diagnosed with MS in 1991. Now, she is a life coach and motivational speaker and the Chapter is thrilled to welcome her as the keynote speaker at its second annual Women On The Move Luncheon Tuesday, April 27 at the Four Seasons Hotel in downtown St. Louis. At the event, the Chapter will honor three Women of Courage. If you are interested in attending or would like to nominate someone for the Women of Courage please go to www.gatewaymssociety.org and click on ‘Women on the Move.’

MS AWARENESS WEEKBe sure to check out our MS Awareness Week videos on our YouTube site at youtube.com/gatewaymssociety. 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.

YOUNG PROFESSIONALS GAINING MOMENTUMThe Young Professionals Group of the Gateway Area Chapter recently held their quarterly meeting and happy hour at The Dubliner on Washington. With 16 guests and a great speaker, the group is building momentum.

Young Professionals will be holding their second fundraiser, A Night on the Greens, on Friday, May 14th. The event will be held at the brand new Highlands Golf Course in Forest Park. The cost to participate is $200 for a team of four and includes 9 holes of night golf, glow equipment, two drinks and unlimited fun! Registration starts at 7 p.m., with an 8:15 p.m. shotgun start. This is a walking event, but caddies will be available for $20. All proceeds benefit the National MS Society.

To register or for more information regarding event sponsorship or volunteer opportunities, please go to www.gatewaymssociety.org, click on “Volunteer” and then “Young Professionals”.

BENEFITING THE NATIONAL MULTIPLE SCLEROSIS SOCIETY

Maureen Manley

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

RESEARCH

UNDERSTANDING “BENIGN MS” BY MARTHA KING

In addition to labels like relapsing-remitting MS, secondary-progressive MS and primary-progressive MS, there is something labeled benign MS for people who live with MS for years without developing any disabilities at all.

Like so much else in MS, no one understands why some MS is so mild. Even the proportion of people with benign MS is unclear. Estimates range from 5% to 40% in different studies, and some doctors have even called for a halt in the use of this term.

Everyone agrees that benign describes the very mildest form of MS. These people have had enough neurological symptoms and MRI abnormalities to be diagnosed — but for the next 10 to 20 years, their physical disability is mild to nonexistent.

The big catch

Early on—which is the very best time to get on a disease-modifying drug—there is no way to predict who will have mild MS and who needs to start therapy as soon as possible. Teasing out the factors that distinguish the “benign” group from others would spare them from taking treatment they don’t need. The factors might also be clues to preventing more disabling MS. Researchers are eager to dig in.

Investigators in Europe are pooling their imaging expertise in an ongoing collaborative MS research project called MAGNIMS. A recent report from this project warns against assuming mild MS is truly benign.* MAGNIMS researchers found cognitive impairment in up to 45% of people who had been designated as “benign.” They concluded that testing to rule out cognitive problems is

essential before a person is considered to have truly benign MS.

The MAGNIMS team also saw some MRI abnormalities that suggested a future of worsening MS and they identified a connection between mild MS and a brain’s ability to compensate for damage by mobilizing other brain regions. In other words, some mild MS had caused real but hidden damage.

The best idea for now

The MAGNIMS analysis adds important insights into “benign MS” — and makes a clear case for further research involving large numbers of people with mild MS. Until more is known, the Society’s National Clinical Advisory Board recommends that treatment with one of the disease-modifying MS drugs be considered as soon as possible following a confirmed MS or CIS diagnosis. To learn more, visit the National MS Society Web site, nationalMSsociety.org and look for Benign MS in our Research/Clinical Updates.

*Neurology 2009;72:1693-1701.

AJ, diagnosed in 2000


DONOR

HITTING THE COURTS, FIELDS AND SLOPES FROM YOUR COUCH

THE BENEFITS OF Wii FOR PEOPLE WITH MS

The last time Ted Hellmuth was on the tennis court with his wife he shagged balls in his wheelchair while she worked on her serve.

But with the Nintendo Wii, Ted can play tennis, as well as many other sports and other activities, from the comfort of his couch.

“Playing the Wii is a unique way to allow somebody with multiple sclerosis to do things they can’t otherwise do,” said Ted, who was diagnosed in 1996. “I can play most of the games like boxing, tennis, bowling, baseball and those are all things I can’t go out on the field and do. But I can sit on my couch and be challenged in a fun way.”

Ted had to retire from his career as a lawyer in 1996 due to fatigue, cognition challenges and other symptoms of his MS.

“For me the hardest part of MS is the incredible inertia that sets in and the strong tendency would be to do nothing whatsoever,” Ted said.

But with the Wii, Ted can remain active and still do things with his family like competing in ski jumping against his daughter or playing a doubles tennis match with his wife.

The Hellmuths recently sold their pool table because it wasn’t getting used. But with the Wii, Ted is able to play pool with family and friends. So the Wii can also help in social settings at parties.

“You can play the Wii by yourself, but there’s also the social aspect,” Ted’s wife Laurie said. “We were at a graduate school graduation party with our son and they had the Wii going. So there’s Ted with MS and he’s able to be out there engaging our son’s friends who are in their 20s and 30s and having a good time rather than just sitting and watching.”

Aside from the games that can stimulate the mind and body while still remaining seated, the Wii also has trivial pursuit and exercise programs.

“The trivia games get your mind going because they’re timed,” Ted said. “There is Wii Fit that has a balance platform. It has a personal trainer and it will challenge you to do different activities. It has yoga and strength training so if you wanted an exercise regime this could provide it.”

While you can have a lot of fun with the Wii, there are some issues that Ted sees with it. One is the cost. The Gateway Area Chapter is hoping to develop a donor program specifically to get Wii into homes of people with MS.

While learning how to play games is fairly easy, setting up the Wii and learning what games are the most fun and most beneficial could be a challenge.

“I think the Wii is something that has potential, but it’s not self starting,” Ted said. “If you just dump a Wii on somebody with some games they may use it or they may not. A lot of things are fun for 10 minutes but then go into the attic. If you spend some time getting the right games and getting it set up, that’s when I think the value comes out.”

With the Wii Ted Hellmuth can do things he normally can’t, like enjoy game of tennis with his wife Laurie. If you are interested in helping the Chapter establish a donation program to help get the Wii to people with MS please contact us.

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DONOR

Another helpful aspect for people with MS would be if there were reviews or articles explaining what games or programs people with MS might like the best or would benefit from the most.

“If this was something that people with MS became interested in, it would be great to have reviews of the games in MS publications,” Ted said. “That would make a big difference because this is all trial and error on my part.”

Despite some of the minor inconveniences, Ted definitely sees the benefit of the Wii.

“It allows you to transcend your disability and do things that you can’t otherwise do,” Ted said.

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

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

Chapter President • Phyllis RobshamNewsletter Editor • Joe Cavato

WritersTraci Buss Joe CavatoKathy Caveny Kim FitzsimmonsMichelle Keating Peggy NeufeldBeth Norviel Charlie Ries

NOTICE: The Gateway Area Chapter of the National Multiple Sclerosis Society is proud to be a source of information about multiple sclerosis. Our comments are based on professional advice, published experience, and expert opinion, but do not represent therapeutic recommendations or prescriptions. For specific information and advice, consult a qualified physician. The National Multiple Sclerosis Society does not endorse products, services, or manufacturers. Such names appear here solely because they are considered valuable as information. The National Multiple Sclerosis Society assumes no liability whatsoever for the contents or use of any product or service mentioned.

Proud member of

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

A LETTER FROM THE PRESIDENTPHYLLIS ROBSHAM

American author and motivational speaker, Les Brown, once said, “Life takes on meaning when you become motivated, set goals and charge after them in an unstoppable manner.”

This sentiment rings true at the Gateway Area Chapter every day. Through the relentless dedication of our volunteers, participants, clients and staff, we continue to be motivated toward our ultimate goal of a world free of MS.

And the fulfillment of that goal gets closer and closer every day with your continued dedication in helping us raise money to support those living with MS in our area and to fund research, as well as helping us spread awareness of MS and what the Gateway Area Chapter has to offer. Through efforts such as MS Awareness Week, we can continue to pass our motivation on to others to join the movement.

Walk MS season is right around the corner. What a great time to find renewed motivation to help us Move It one step at a time. Look on our website for all the site locations and details.

If you know someone who would benefit from receiving this magazine and other information from the Chapter, please let us know so that we can reach out to them.

Email us at [email protected].

Thank you for your motivation to our mission.

FROM THE PRESISDENT


The latest technology and vehicle modifications are enabling people with disabilities the kind of mobility in society that was once only a dream. It is this mobility that helps provide freedom and independence like never before.

What has made the world more accessible and conve-nient is the advancement of wheelchair accessible vehicles, driving systems, mobility seats, scooter lifts, and other vehicle modifications.

“Vehicle mobility used to be primarily the full-size vans with the bulky platform lifts,” said Stephen Kin-stler, a Mobility Specialist with United Access (www.unitedaccess.com) of St. Louis, which sells, installs and services all types of advanced mobility tech-nology. “The lowered floor minivans that we offer provide greater access to facilities, more comfort and better gas mileage, while also enabling the person in the wheelchair to sit up front and drive, which is what I do in mine.”

United Access, one of the largest mobility dealers in the nation, is a full line dealer as well as an exclusive supplier of some technologies, which enable them to offer multiple vehicle solutions for any specific need.

United Access has grown from one small store in St. Louis in 1997 to seven branches including Kansas City, MO,

Columbia, Mo., Spring-field, Mo., Memphis, Tenn., Springfield, Ill., and Champaign, Ill., with plans to add two more branches next year.

“I think one of the best ad-vancements in our indus-try is inventory. We have a lot full of brand new, modi-fied vans as well as a large selection of used, modified vehicles,” said Richard May, owner and founder of United Access. “People can come here and leave the same day with a vehicle they want, that is perfectly suited to their needs and within their budget.”

To help tackle the expense, United Access works with their customers to help find funding sources through federal, state and Veterans Administration sources. United Access also helps arrange vehicle financing, through their banking partners, to fit different bud-gets. In some cases, extended term financing of up to 10 years is available.

From large inventories, to the dozens of mobility options to fit specific needs, to help with funding and extended financing, there is a lot to be excited about in the vehicle mobility industry.

“I’ve been in this industry since the beginning and the new products and technology are great,” May said. “But what I love about this business is reaching out and helping people gain freedom, independence and mobility in life.”

Call 1-800-344-4867 for a referral to a vehicle modi-fication company in your area.

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United Access Open HouseCome learn about the latest technology in vehicle

accessibility and modifications.Wednesday, March 24, 5:30-7 p.m.

United Access 9389 Natural Bridge Road

314-989-1010 or 888-939-1010

Accessible Vehicles, Modifications Move Forward

Kim, diagnosed in 1986

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Saturday, May 15, 2010Time: 6:30-9 p.m.

Grant’s Farm10501 Gravois RoadSt. Louis, MO 63123

Time to enjoy an evening with your friends and family and Grant’s Farm! The program begins with a ride on a Grant’s Farm tram and enjoying a tour of Deer Park. Your next stop is at The Bauernhof, home world-renowned stables, and location of the evening’s festivities.

Activities include: g Meeting others living with MSg Photo with Clydesdalesg Accessible tram tour of Deer Park-home to exotic animals from around the world!g Arts and Crafts areag Live musicg Food buffet and beverages

Register before May 3 to receive a special early registration fee.

Early Bird Fee (Register before May 3)$10 adult $5 childRegular Fee$20 adult $10 childRegistration deadline: May 10

Fee waivers available for program and transportation.

Family Evening at Grant’s Farm

Family Evening Registration[ ] Grant’s Farm, St. Louis, MO Saturday, May 15, 2010

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: __________________________________________Payment Information (Grant’s Farm only)( ) Fee waiver requested( ) Check enclosed payable to MS Society( ) Visa ( ) MasterCard ( ) DiscoverCard # ___________________________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 Calen-dar” to choose the program you would like to attend.

Program sponsored by Boeing and United Access


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MS research is progressing at a remarkable rate, with more potential therapies in the pipeline than at any other time in history. The National MS Society is a driving force of MS research, supporting and stimulating world-class research into ways to prevent, better treat and cure this unpredictable disease of the brain and spinal cord. Learn how far we’ve come, where we’re going and what the NMSS and others are doing to move toward a world free of MS.

MS specialists will provide up-to-date information on research in MS in your community on:g Latest information on research and new therapiesg New data on disease modifying medication for MS

SPEAKERS & LOCATIONS

April 17, 2010 Noon to 2 p.m.Holiday Inn – Carbondale, IL2300 Reed Station ParkwaySpeaker: Dr. Amy RauchwayAssistant Professor of Neurology Department of Neurology & Psychiatry Saint Louis University School of Medicine, St. Louis, MORegistration deadline: April 9, 2010

April 17, 2010 Noon to 2 p.m.Jack’s Gourmet – Columbia, MOUS Highway Bus Route 63Speaker: Dr. Becky ParksAssociate Professor of NeurologyJohn L. Trotter MS CenterWashington University, St. Louis, MORegistration deadline: April 9, 2010

Research MS Research MS Registration

Please mark which program

[ ] April 17, 2010 Carbondale, IL

[ ] April 17, 2010 Columbia, MO

Name ____________________________ Address ___________________________ City/State/Zip _______________________Home phone ________________________Work phone ________________________E-mail ____________________________Do you use a mobility device? ______________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


Program sponsored by Wachovia.

Spring Rendezvous Spring RendezvousRegistration

[ ] Pere Marquette Lodge Grafton, IL May 1-2, 2010

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: __________________________________________

Payment Information ( ) Fee waiver requested( ) Check enclosed payable to MS Society( ) Visa ( ) MasterCard ( ) DiscoverCard # ___________________________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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Take one weekend to relax and have fun with other adults living with MS.

Spring Rendezvous 2010 May 1-2

Pere Marquette Lodge in Grafton, IL.

Plenty of activities are planned for the all-adult weekend including guest speakers on relationship building and effective communication, arts and crafts, accessible swimming, and evening entertainment. Must be 21 to attend.

This program fills up quickly, so be sure to register early!

Early registration (by Apr. 12) is $60 per personRegular registration (after Apr. 12) is $70 per person

Registration includes overnight lodging, meals, and activities. A limited number of fee waivers are available for this program and/or accessible transportation. Start Date: Saturday, May 1, 2010 End Date: Sunday, May 2, 2010

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Saturday, June 19, 2010Time: 3-7 p.m.Stephens Lake ParkRiechmann Pavilion2300 E. Walnut, Columbia, MO Family Evening-Columbia, MO is a great way to meet other people living with MS. Join us for an afternoon of fun, food, family and friends. The program will take place at an air-conditioned, indoor pavilion located with easy access to Stephens Lake.Activities include:g Arts and crafts areag Face Paintingg Raffle prizesg Barbequeg Dessert potluckg Games and other outdoor activities

Cost: FREE PROGRAMFee waivers are available for transportation to program.Registration deadline: June 9

Family Evening Columbia, MO

Family Evening Registration[ ] Night at the Ballpark, Marion, IL Saturday, June 12

[ ] Stephens Lake Park, Columbia, MO Saturday, June 19Name ____________________________ 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: __________________________________________Payment Information (Night at the Ballpark only)( ) Fee waiver requested( ) Check enclosed payable to MS Society( ) Visa ( ) MasterCard ( ) DiscoverCard # ___________________________Expiration Date: ______________________Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440To register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calen-dar” to choose the program you would like to attend.

Family Evening Night at the BallparkSaturday, June 12, 2010Time: 6-9 p.m.Southern Illinois Miners vs. Windy City ThunderboltsRent One Park1000 Miners Dr.Marion, IL, 62959 Batter Up! Nothing says summertime like a trip to the ballpark. Grab your family and friends and cheer on the Southern Illinois Miners.Cost: $7 per person

Program sponsored by Boeing and United Access

TALK MS GROUPSMISSOURI

Cape Girardeau 3rd Saturday, 10 am

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

Sharon (573) 332-8148

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

Deanna (573) 882-6767

Crystal City/Festus 2nd Tuesday, 1 pm

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

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

Fulton April 7, 3 pm Home Real Estate2606 North Bluff, Fulton, MO 65251

Diana (573) 642-9234Cindy (573) 220-7331

Jefferson City 3rd Monday, 6 pm

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

Chris (573) 645-0130 [email protected]

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

[email protected]

Poplar Bluff 2nd Sunday, 2 pm

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

Tamra (573) 568-3912 [email protected]

St. Charles 3rd Sunday, 3pm

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

Washington 3rd Wednesday, 6 pm

St. John’s Mercy Hospital, 851 East 5th St.Mercy Medical Building, Educational Department, Classrooms A&B

Anne (636) 359-6037

West Plains 3rd Wednesday, 5 pm

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

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

ST. LOUIS METRO

Affton 3rd Wednesday, 7 pm

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

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

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

West County 2nd Tuesday, 7 pm

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

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

1st Saturday, 10 am

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

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

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NEW GROUP!

There will be a new Talk MS group beginning in Cuba, MO this summer. Contact Allison at (800) 344-4867 or [email protected].

NEW GROUP!

ILLINOIS

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

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

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

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

Granite City Call for Dates Gateway Regional Medical Ctr, Pascal Hall 2100 Madison Ave, Granite City, IL 62040

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

Litchfield 4th Tuesday, 6:30 pm

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

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

Metro East Apr. 28, 7 pmJune 23, 7 pm

LINC, Inc. #1 Emerald Terrace Ste. 200Swansea, IL 62226

Diane (618) 235-8823 [email protected]

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

Southern Illinois 2nd Tuesday, 5 pm

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

Robert (618) 983-0321

SPECIALIZED GROUPS

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

MS Fun, Friends & Food June 16 pm

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

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

Veterans with MS 2nd Wednesday, 10 am

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

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

CarePartner and Family Group

3rd Wednesday, 7 pm

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

[email protected]

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 or bring a guest. 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 24 and above to learn more.

Talk MS Group Open House Upcoming Talk MS Group Open House Schedule:Cape Girardeau, MOSaturday, March 20

Fulton, MOWednesday, April 7

TALK MS GROUPS


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Friday, April 30, 20106:30-9 p.m.Forest Park Visitor and Education Center 5595 Grand, St. Louis, MO

Saturday, May 1, 20106-8:30 p.m.Les Bourgeois Vineyards14020 W. Highway BBRocheport, MO 65279

Objectivesg How multiple sclerosis impacts sexual functiong Understand what can be done to improve

intimacy and sexual relationsg Everything you always wanted to know but

were afraid to ask

Guest Speakers:Dr. Frederick Foley, Ph.D.Director of Neuropsychology and Psychosocial ResearchMultiple Sclerosis Comprehensive Care Center, Holy Name HospitalTeaneck, NJ

Heather Raznick, MSW, LCSWClinical Sex TherapistPrivate PracticeSt. Louis, MO

FREE PROGRAM INCLUDES DINNER!

Sex is Not a 4-Letter Word

Sex is Not a 4-Letter Word Registration

[ ] St. Louis, MO Friday, April 30

[ ] Columbia, MO Saturday, May 1

Name ______________________________Address _____________________________City/State/Zip _________________________Home phone __________________________Work phone __________________________E-mail ______________________________Guests (please include age) _________________Does anyone in your party use a mobility device? ____Does anyone in your party have any dietary restrictions? __________________________________


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

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Columbia program sponsored byEMD Serono

St. Louis program sponsored byBiogen Idec.


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Tuesday, May 11, 2010 6-9 p.m.

FREE PROGRAM!

St. Louis Zoo - Lakeside CaféSt. Louis, MO

Speaker: Dr. Randall Schapiro President, The Schapiro Multiple Sclerosis Advisory Group Eagle, CO

Using his book Managing The Symptoms of Multiple Sclerosis, Dr. Randall Schapiro will take people living with MS through three areas of MS management: the disease, the symptoms and the issues related to lifestyle and general wellness. He will explore all the symptoms of MS and discuss proven methods for proper and effective management.

Participants will:Learn the three areas of MS management: the disease, the symptoms, and lifestyle and general wellness

Registration 6 p.m. Dinner 6:30 p.m. Program 7-9 p.m.

Registration deadline: April 30th

Living the Symptoms of MS

Living the Symptoms of MS Registration

[ ] St. Louis, MO Tuesday, May 11

Name ____________________________Guest name ________________________Address __________________________City/State/Zip _______________________Home phone ________________________Work phone ________________________E-mail ____________________________Do you prefer to receive your confirmation via mail or e-mail? ____________________Does anyone in your party use a mobility device? ____Does anyone in your party have any dietary restrictions? __________________________________



Program sponsored by Teva Neuroscience

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

Why aquatics?g The buoyancy of the water

reduces your body weight, meaning less stress on joints!

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

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

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

MS Aquatics

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

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

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

Chesterfield JCCContact: Sheena Koster (314) 442-3495

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

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

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

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

Show Me AquaticsContact: Carolyn (636) 896-0999

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Therapeutic recreation programs sponsored by Anthem Blue Cross

and Blue Shield Foundation

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

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

St. John’s Mercy Medical Building (South County near I-270 & Tesson Ferry Rd.)12348 Old Tesson Rd. , St. Louis MOInstructor: Linda Whitney (314) 729-0181Tuesdays Feb. 23 - April 13 and April 20 - June 85:30-6:30 p.m. (Beginner)7-8 p.m. (Gentle)

Thursdays Feb. 25 - April 15 and April 22 - June 109:30-10:30 a.m. (Beginner)

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

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

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

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

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

SOUTHEAST MISSOURI

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

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


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Your Yoga for Your MS

Adapting Yoga to All Ability LevelsMS yoga instructors have additional knowledge of MS and its symptoms. Instructors modify postures to your ability level using different props such as blankets, chairs, straps or blocks which 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 anxietyg Improves spasticityg Helps overcome stiffnessg Increases oxygen in the bloodg Promotes relaxation

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

and meet new friends

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The Wellness Network connects people who have an interest in or who are actively participating in exercise programs through a monthly teleconference. These are similar to the Chapter “Talk MS” groups but each call will focus on a different topic relating to wellness. Upcoming topics include:• How Physical Therapy Can Help (March 25)• How to Stay Active During an Exacerbation (April 29)• Adaptive Exercise Equipment (May 27)• Nutrition (June 24)

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.

Wellness Network Wellness Network Registration[ ] How Physical Therapy Can Help Thursday, March 25, 7-8 p.m.

[ ] How to Stay Active During an Exacerbation Thursday, April 29, 2010, 7-8 p.m.

[ ] Adaptive Exercise Equipment Thursday, May 27, 2010, 7-8 p.m.

[ ] Nutrition Thursday, June 24, 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 314-781-1440To register online go to gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the program you would like to attend.

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Program sponsored byAnthem Blue Cross and Blue Shield Foundation


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Mark your calendars for every second Monday of the month for the Midwest Teleconference Series. The series topics from March through May are:

Nutrition and MSSpeaker: Maria J. Brodsky, RD, LD, DNSD registered dietician Date/Time: March 8, 2010, 7-8 p.m.Objective: Increase knowledge of healthy eating strategies and techniques

Coping with Changes in Cognition Speaker: Jared Bruce Date/Time: April 12, 2010, 7-8 p.m.Objective: Increase knowledge of cognitive changes that can happen as a result of MS and practical tips for adapting to those changes.

MS and the Urinary Tract Speaker: Brett Trockman, MD.Date/Time: May 10, 2010, 7-8 p.m.Objective: Increase knowledge of how MS affects the urinary tract

Coping with Change Speaker: Lisa Sworowski, PH.D. MD.Date/Time: June 14, 2010, 7-8 p.m.Objective: Increase knowledge of coping techniques for people living with primary progressive, secondary progressive and relapse-remitting MS

Midwest Teleconference Series

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

[ ] Nutrition and MS Monday, March 8, 7-8 p.m.

[ ] Coping with Changes in Cognition Monday, April 12, 7-8 p.m.

[ ] MS and the Urinary Tract Monday, May 10, 7-8 p.m.

[ ] Coping with Change Monday, June 14, 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


This program sponsored by Bayer Healthcare and, Biogen Idec,

Did You Make Any Recent Home Modifications?Missouri residents who have made home modifications to their primary residence in the past year may be eligible for up to a $2,500 tax credit through the Residential Dwelling Accessibility Tax (DAT) Credit program.

To be eligible for 100% of the tax credit, an individual or married couple filing a joint state return must have an adjusted gross income of $30,000 or less.

To be eligible for 50% of the tax credit, an individual or married couple filing a joint state return must have an adjusted gross income of $30,000 to $60,000.

Eligible costs include constructing entrance or exit ramps, widening exterior or interior doorways, widening hallways, installing handrails or grab bars, moving electrical outlets and switches, installing stairway lifts, installing or modifying fire alarms, smoke detectors, and other alerting systems, modifying hardware of doors and modifying bathrooms.

This program receives $100,000 in appropriations each year. Approved tax credits are issued in the order they are received, on a first-come, first-served basis.

Application forms can be found on the Department of Revenue’s website: http://dor.mo.gov/tax/taxcredit/dat.htm

For more information and eligibility requirements, please contact Blake Fuhler at the National MS Society at [email protected] or 314-446-4193.

The Gateway Area Chapter is excited to announce the availability of new MS resources in your community. We are visiting more than 250 public libraries across the 90 counties in our Chapter and providing them with two new books on MS. These books provide a wealth of information about MS, symptoms, therapies and how MS can affect your life, family and work. Both books provide complex information in easy-to-read formats. You can visit the public library in your community to check out these books. You can also access the Chapter’s Lending Library for these books as well as many other books, DVDs and CDs specific to MS.

Find these books at your local public library: • MS for Dummies by Rosalind Kalb,

Nancy Holland and Barbara Giesser• Multiple Sclerosis: The Questions You

Have—The Answers You Need, by Rosalind C. Kalb, PhD

Resource Center

In your Library!

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Tax Time 2010 by Elinor Nauen

Just having MS may feel like more than enough to deal with, but you have to pay taxes like everybody else. There is some good news: You can potentially reduce your tax bite. Learn all you can about the allowances available to people with disabilities. First off, every penny you spend out of pocket, beyond what’s reimbursed by your insurance, may add up to legal deductions.

“Many things qualify as medical expenses,” said Trudy C. Durant, an accountant in New York and New Jersey: medical equipment; supplies; insurance premiums you pay yourself; transportation and lodging (but not meals) for medically essential trips — for both you and a companion; home attendants; and doctor-recommended programs such as weight loss or smoking cessation. A physician’s letter is essential in case you’re audited.

Home improvements that are primarily for medical care are also allowable. This would include air conditioners, a roll-in shower, a stair lift, and an elevator. There is a catch. You can deduct what you spend minus the amount that the improvement increases the value of your property.

Let’s say you installed a $40,000 swimming pool. If it raises the value of your house by $10,000, you can deduct $30,000. Costs to remove a barrier, such as widening doorways to accommodate mobility aids, are also deductible. Spending the winter in Florida? Sorry, you’re out of luck.

All these deductions kick in only after you’ve paid 7.5% of your adjusted gross income for medical expenses. So, for example, if your income was $ 50,000 a year, and you spent $6,000 on medical expenses, the first $3,750 is your responsibility. You can deduct $2,250 of your $6,000 expense.

Your best bet is to keep really good records, group major expenses into one tax year if you can, and take the advice of a tax professional, including the IRS itself.

“Use common sense. Some potential deductions haven’t been tested in the courts. You’ll

have to decide if you want to chance having to fight for them,” Durant said.

For more information: log on to irs.gov or call the IRS’s toll-free number: 1-800-829-1040. For those who qualify, the IRS’s Volunteer Income Tax Assistance (VITA) program—with offices in many convenient neighborhood locations—helps prepare basic tax returns. Call 800-829-1040.

Knowledge is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or e-mail formats. To register call 1-800-344-4867, or visit nationalmssociety.org/knowledge.

Join the movement.

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Tuesday, April 20, 20106:30-8:30 p.m.

Hilton St. Louis Frontenac1335 South Lindbergh BoulevardSt. Louis, MO 63131

Speaker: Dr. Robert Naismith, Neurologist, Barnes Jewish Hospital John L. Trotter MS Center

Please join us at this free program whereDr. Naismith will:

• Explain how the visual system functions and how it is affected in MS.

• Talk about the prognosis and treatments for optic neuritis.

• Discuss why it is important to begin MS therapy as early as possible.

• Summarize the research being done on optic neuritis at Washington University.

Registration: 6-6:30 p.m.Dinner: 6:30-7 p.m.Program: 7-8:30 p.m.

Cost: Free

Optic Neuritis & MS Optic Neuritis & MS Registration

[ ] St. Louis, MO Tuesday, April 20

Name ____________________________Guest name ________________________Address __________________________City/State/Zip _______________________Home phone ________________________Work phone ________________________E-mail ____________________________Do you prefer to receive your confirmation via mail or e-mail? ____________________Does anyone in your party use a mobility device? ____Does anyone in your party have any dietary restrictions? __________________________________



Program sponsored byEMD Serono

MARCH 20106 Fitness MS – St. Louis, MO8 Midwest Teleconference Series11 New Connections Social

Gathering, Cape Girardeau, MO11 MS Unplugged: Real Talk About

Treating Your MS Program13 Fitness MS – Columbia, MO 13 Fitness MS – St. Louis, MO20 Talk MS Open House, Cape

Girardeau, MO24 United Access Open House,

St. Louis, MO25 Wellness NetworkAPRIL 20107 Talk MS Open House, Fulton, MO10 Walk MS – Arnold, MO;

Carbondale, IL; Eureka, MO11 Walk MS – Clayton, MO;

Edwardsville, IL; St. Peters, MO12 Midwest Teleconference Series17 Research MS – Columbia, MO17 Research MS – Marion, IL17 Walk MS – Godfrey, IL18 Walk MS – Cape Girardeau, MO20 Optic Neuritis, St. Louis, MO22 Walk MS – Steppin’ Out for MS

Night Walk, St. Louis, MO24 Walk MS – Columbia, MO;

Millstadt, IL27 Women On the Move Luncheon,

St. Louis, MO29 Wellness Network30 Sex Is Not A 4-Letter Word,

St. Louis, MO

MAY 20101 Sex Is Not A 4-Letter Word,

Columbia, MO1 Spring Rendezvous, Grafton, IL1 Walk MS – Poplar Bluff, MO;

Troy, MO2 Spring Rendezvous, Grafton, IL8 MS Mud Run10 Midwest Teleconference Series11 Living the Symptoms of MS,

St. Louis, MO15 Family Evening at Grant’s Farm,

St. Louis, MO26 World MS Day27 Wellness NetworkJUNE 20104-6 Challenge Walk MS,

St. Charles County, MO12 Night at The Ballpark, Marion, IL14 Midwest Teleconference Series19 Family Evening, Columbia, MO24 Wellness Network

Chapter Calendar MS Unplugged: Real Talk About Treating Your MS Surfing the Internet and reading educational literature can be great ways to learn about treatments for relapsing MS, but you have other options. Another way to get the information you need is to attend a live program where you can interact with an MS expert and others living with MS. So join this upcoming educational session, listen to an MS expert discuss treatment options, ask questions, and hear from others living well with relapsing MS. This is an event you won’t want to miss!

Guest speakers: Dr. Becky Jo Parks, MD, John L. Trotter Multiple Sclerosis Center, Department of NeurologyJordan Sigalet, MS LifeLines Ambassador, professional hockey player who lives with MS

Event detailsThursday, March 11Hilton – St. Louis FrontenacRegistration: 5:30 p.m. Program: 6 p.m.Includes complimentary dinner. Call 1-877-329-8327.


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Take Me Out To the BallgameBatter Up! Nothing says summertime like a trip to the ballpark. Grab your family and friends and cheer on the Gateway Grizzlies or the River City Rascals. Keep a look out this spring for future announcements on when tickets will be available for these games.

These tickets will be available on a first-come, first-served basis. If you would like to be placed on a mailing list to receive advanced notification, please contact Allison at (314) 446-4184 or [email protected].

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Permit No. 3914St. Louis, MO

Gateway Area Chapter1867 Lackland Hill ParkwaySt. Louis, MO 63146

Gateway Area Chapter1867 Lackland Hill ParkwaySt. Louis, MO 63146RETURN SERVICE REQUESTED


happeningsmaking the most of life and the least of MS

NationalMultiple SclerosisSociety

In this issueUnited Access Open House . . . . . . . . 19Family Evening at Grant’s Farm . . . . 20Research MS . . . . . . . . . . . . . . . . . . . . 21Spring Rendezvous . . . . . . . . . . . . . . 22Family Evening . . . . . . . . . . . . . . . . . . 23Talk MS Groups . . . . . . . . . . . . . . 24-25Sex Is Not A Four-Letter Word . . . . . 26Living The Symptoms of MS . . . . . . . 27Therapeutic Recreation . . . . . . . . 28-29Wellness Network . . . . . . . . . . . . . . . 30Midwest Teleconference Series . . . . 31Resource Center . . . . . . . . . . . . . . . . . 32Money Matters . . . . . . . . . . . . . . . . . 33Optic Neuritis . . . . . . . . . . . . . . . . . . . 34Chapter Calendar . . . . . . . . . . . . . . . . 35

Your Source for Knowledge, Wellness, and Support Spring 2010

It’s time to spring forward and you can do that in a variety of ways with the Chapter in the upcoming months.

Bring your family and friends out to Grant’s Farm (pg. 20) or to Family Evening in Columbia (pg. 23).

The Chapter is always offering great learning opportunities. Upcoming ones include discussions on the symptoms of MS (pg. 27) and optic neuritis (pg. 34). Of course there are always the Chapter teleconferences (pg. 31)

which will include topics like nutrition and cognition.

With spring also comes tax time. See pages 32 and 33 for information on possible tax credits and information on possible deductions from medical bills.

You can also learn about the technological advancements in accessible vehicles and modifications (pg. 19).

It’s also Walk MS season and there is sure to be a walk near you (pg. 35).

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