MS Connection - Summer Edition 2011

MOVING TOWARD A WORLD FREE OF MS | SUMMER • 2011

GATEWAY AREA CHAPTER

A FUNDRAISER FOR MOM Run for homecoming queen raises money and awareness

YOUNG FACES OF MSPair of teenagers live with MS | 3

GROWING UP FAST Sisters learn life lessons while

caring for mother | 4

YOUTH RESOURCES NMSS offers programs for

youth affected by MS | 14-15

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

CROSSWORD PUZZLE

INSIDE THIS ISSUEA LETTER FROM THE PRESIDENT PHYLLIS ROBSHAM

Growing Up FastPAGE 4

A Fundraiser for Mom PAGE 6

Ask the Professional PAGE 10

MS Brain GamesPAGE 13

Summer… long sunny days, barbecues, outdoor activities, vacations, and spending time with family and friends. Unfortunately, multiple sclerosis is a “family” disease that doesn’t take a vacation. MS affects spouses, parents, children, extended family members, and others who care for and support those living with the disease. MS can be particularly challenging for young people who take on additional responsibilities to help a parent living with the disease.

While we tend to think of MS starting in adulthood, we know that between 2% and 5% of all people with MS have symptoms starting before age 18. Additionally, as Dr. Soe Mar reports in this issue, awareness of pediatric MS over the past five years indicates that somewhere between 5 and 10 percent of people with MS are in their early teens or younger.

We are extremely excited to introduce Camp Hope, a new program to support kids ages 8-15 who have a loved one with MS or live with MS. Camp Hope, which will take place July 19-23 at Touch of Nature in Makanda, IL, includes fun summer camp activities as well as educational opportunities to help young people better understand MS and ways to move forward with it in their lives.

In this issue you will see stories of young people affected by MS and the unique ways in which some of them have joined the movement and are committed to the stopping the disease, restoring what’s been lost and ending MS forever.

P.S. Be sure to check out the Happenings section of this issue for information about Relationship Matters, Family Weekend, and other programs designed to support families affected by MS!

THE YOUNG FACES OF MS 3

SISTERS GROW UP FAST 4

FATHER & SON FIGHT MS 5

HOMECOMING FUNDRAISER 6

CAMP HOPE 7

VOLUNTEER COLUMNS 8-9

ASK THE PROFESSIONAL 10

FROM THE BOARD 11

NEWS BRIEFS 12

MS BRAIN GAMES 13

ABOUT PEDIATRIC MS 14

PEDIATRIC MS RESOURCES 15

MS BRAIN GAME ANSWERS 16

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MS Brain GamesPAGE 13

Most 18-year-olds are concerned with who they are taking to prom or submitting college applications. But for others, those things are a drop in the bucket compared to other challenges they face.

Meet Jamie Carter, a recent high school graduate who lives with MS. Jamie was diagnosed with MS nearly two years ago and quickly learned about a whole new set of challenges in addition to exams and homework. After her initial shock, she wondered how people were going to treat her and if she was the only teenager out there with MS.

“Though my parents kept telling me that I wasn’t the only one, I sure did feel like I was the only teenager in the world dealing with MS,” she said.

Jamie soon experienced various limitations the disease imposed upon her life. She can no longer stay for long periods of time at school dances, as she often gets tired and overheated. The strobe lights also bother her, but thankfully, the dj’s will turn them off if she asks them to. She is unable to ride roller coasters at Six Flags. She also experiences eye pain, though she is quick to point out that the disease affects each person differently.

She attended a camp in Rhode Island last summer, where she met people who shared a lot about the disease, its history and various treatments. Despite being unable to do some things she used to do, Jamie is determined to keep moving forward with her life, enjoying as much as possible.

“I plan on going to college to major in special education to become a special education teacher,” Jamie said.

Kim Meriweather, a junior in high school, unfortunately can no longer participate in cheerleading and “normal” teenage stuff. Despite that, she still wants people to treat her the same.

“I wish people would understand that I’m no different than the next person,” Kim said. “This disease does not change me; I’m still the same Kim my friends know and love.”

Kim’s family is all too familiar with the impact of MS. Her great-aunt, Lisa Hollins, was diagnosed in 2000. The disease significantly affected Lisa’s eyesight and her ability to use her

right hand, and caused her pain in her legs.

Instead of letting it bring her down, Lisa decided to take action and learn more about it, taking Kim with her to various MS programs and activities and regularly volunteering at fundraising events.

“Kim’s diagnosis was very hard for me to accept because she’s such a sweet and good girl,” Lisa said. “I hated the idea of her dealing with such an unpredictable disease.”

However, Lisa is determined to carry on with a positive attitude and help her family through the unknown.

“Although this disease comes with uncertainty, I want everyone to understand that this disease should not take over their lives,” Lisa said. “They should continue to make plans and pursue their dreams, and check off items on their bucket list.”

To learn more about pediatric MS go to nmss.org g About MS g Pediatric MS.

THE YOUNG FACES OF MS

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Jamie Carter and Kim Meriweather have had to make some adjustments in their lives as teenagers living with MS.“Though my parents kept telling me that I wasn’t the only one, I sure did feel like I was the only teenager in the world dealing with MS.”

— Jamie Carter

Sisters Sarah (22 years old), Hannah (19) and Mary (16) Berg know all too well about multiple sclerosis. Their mother Emma was diagnosed with the disease when Sarah was just three, and the three sisters had to grow up all too quickly as they helped care for their mother until she passed away this January.

“I always thought we were taking care of what needed to be done,” Hannah said. “Taking care of our mom was such an integral part of our lives that most of the time, we did not even realize we were doing something out of the ordinary. I didn’t know anything different.”

The Bergs lost their father in 2001 so they moved in with their aunt Mary Ann Kren who helped to care for their mother.

“My sisters and I all agree that even though things have been very difficult we would not take back anything that has happened,” Sarah said. “Everything we have gone through has made us who we are today. It did make us grow up a lot faster than most kids, but I definitely think we all have very strong work ethics because of it.”

After Emma was diagnosed, her MS progressed rapidly. Sarah remembers her having difficulty walking, and then needing a walker. Shortly after Mary was born, Emma was primarily in a wheelchair or bedbound.

“At any given time someone had to be home with my mom,” Sarah said. “It started off being me and my aunt. As Hannah and Mary

got older we were able to let them take on more responsibilities. We just saw it as she’s our mom and she would do the same for us if she could.”

The sisters and their aunt teamed up as much as possible and shared duties to help prevent them from getting overwhelmed.

“It wasn’t easy,” Mary said. “We would alternate between who helped her with her medications or feeding so it wasn’t one person all day every day. It was good that there were a couple of us to help.”

Emma always did what she could for her daughters, even if it was just saying a simple prayer or providing a sweet smile.

“She was such a great woman. I would always ask her to say prayers for me if I had a test or something,” Sarah said. “She’d take my hand and say a prayer real quick. I’m a nurse now so it seemed to work.”

Hannah was awarded a partial scholarship from the Gateway Area Chapter and just finished her first year at the University of Missouri St. Louis. She recently

spoke at the Chapter’s Women on the Move Luncheon. She is intending a career in child psychology to assist kids, like her and her sisters, who face adult-size issues.

“The MS Society has been a huge support in our lives over the years,” Hannah said. “I only hope I can return the favor by actively participating in MS-sponsored events and raise awareness of this disease by sharing our story.”

Mary recently finished her sophomore year at Incarnate Word Academy and she is also interested in helping others.

“You grow to like taking care of other people and helping them improve their lives,” Mary said. “I have considered working with mentally challenged people. I think they have a different outlook and I like the idea of helping them.”

To learn more about resources for young people go to gatewaymssociety.org g Programs & Services.

SISTERS GROW UP QUICKLY WHILE CARING FOR MOTHER

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Hannah, Mary and Sarah Berg have lived with MS practically their entire lives. They cared for their mother Emma until she passed away this January.

“Taking care of our mom was such an integral part of our lives that most of the time, we did not even realize we were doing something out of the ordinary. I didn’t know anything different.”

— Hannah Berg

A diagnosis of multiple sclerosis certainly changes the equation. It can slow you down and affect the way you walk, drive, work, think and just about everything else.

Stephen Jolly knew all about MS even before he was diagnosed in 2003. MS bullied its way into his life when he was 16 and his father was diagnosed.

“When I first got diagnosed I fell into a deep depression about it,” Stephen said. “My father had it and I know what MS can lead to. After he got diagnosed it went downhill from there. My dad was a big strong guy and he needed a cane and was bedridden.”

Stephen, a father himself who had to retire from the military due to his MS, was naturally worried about his relationship with his youngest son Patrick, 14.

He and Patrick have been fighting MS together – literally. They recently earned the degree of black belt in tae kwon do and the two have been training together three times a week for more than two years.

“It means a lot to me because my father never had the opportunity to do a lot of fatherly things like this with me,” Stephen said. “It’s a big deal to me.”

It also means a lot to Patrick.

“It’s pretty neat to be able to do this with him because he might not be able to do it forever,” Patrick said. “So I want to do as much as I can with him.”

Stephen knew something wasn’t right when he was still in the Army and was having issues with his leg, arm and eyesight.

“I had been struggling for about five years before I was actually diagnosed,” Stephen said. “It hindered my running and they could never really figure out what it was. They finally sent me to Barnes Jewish Hospital in St. Louis, did an MRI and found a lesion.”

Stephen has had a couple of exacerbations, but after initially feeling very depressed about the diagnosis, he began treatments and got moving with aquatics and

tae kwon do. He also instructs swimming and martial arts at the local YMCA.

“You can’t give up,” he said. “You have to continue to try to do something whether it’s something in the water to get your body going or medicine. It’s vital to just not give up.”

While it certainly isn’t easy to do tae kwon do training three times a week, Stephen has some extra motivation — Patrick.

“I just want to be there as much as I can for him,” Stephen said. “That’s something that keeps me going. I don’t give up. Sometimes I don’t walk right. I can’t jump up and do any spin kicks, but I just try to keep a positive attitude. I just continue to try to strive on.”

To learn more about staying active with MS go to gatewaymssociety.org g Programs & Services g Wellness & Exercise.

FATHER & SON FIGHT MS TOGETHER


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“When I coach my son’s hockey team, it’s hard for me to put one skate in front of the other. But, I persevere because MS won’t stop me from being a dad and taking care of my family.”

— Eric, diagnosed in 2004

skating on thin ice

MS =

“It means a lot to me because my father never had the opportunity to do a lot of fatherly things like this with me.”

— Stephen Jolly

Tracy Holmquest was always a fixture at her daughter Ashley Armstrong’s activities. She coached her soccer team, led her girl scout troop and was always actively involved in what Ashley was up to.

“Ashley and I are very close,” Tracy said. “We do everything together.”

Then they got thrown for a loop. About six years ago Tracy knew something wasn’t right in her leg, and she was feeling weak. After meeting with her doctor, a neurologist, having an MRI and spinal tap and then a second opinion, Tracy was officially diagnosed with MS on June 9th, Ashley’s 11th birthday.

“It’s pretty hard to go up and down the soccer field in a wheelchair or with a cane, so it kind of ended my coaching,” Tracy said. “Our lives completely changed. Ashley grew up really fast.”

Ashley and Tracy got educated on what MS was and their family adjusted when they were hit with the diagnosis.

“I had never heard of MS,” Ashley said. “A nurse explained to our family what MS was but it wasn’t too kid friendly. It was a lot to deal with at once. We were always on the go, so it was difficult to see her go in the other direction and not be able to do all those things. I had

to grow up kind of fast.”

Tracy has had several attacks in the past six years and has experienced many MS symptoms, including a period of time when she couldn’t drive due to a loss of vision. While Tracy doesn’t coach Ashley’s soccer team anymore, the two still do most things together.

Last fall, they teamed up on a fundraiser when Ashley was in the running for homecoming queen at Columbia Hickman High School.

Ashley and Tracy spent hours in the kitchen baking cookies and brownies to sell. They wrote a letter that they sent to Tracy’s work clients and sold food during lunch at school. In a little less than two weeks, the 10 girls running for homecoming queen raised a total of $18,000 for various charities and Ashley raised a school record – $5,369 for the Chapter.

“I was amazed to see what people were willing to do,” Ashley said. “Someone we don’t really know that well sent a check for $200. It was great to see how people responded.”

Just having the ability to promote

awareness about MS and to raise money for the National MS Society with her daughter has been a thrill for Tracy.

“MS has been such a big part of our lives and we’ve had ups and downs,” Tracy said. “We’ve come full circle from not knowing what it was, to getting it, to having a really bad bout with it. I couldn’t be prouder of her. To be able to give back is pretty neat.”

Ashley has certainly learned a lot about her mom and herself since her mom was diagnosed with MS.

“I’ve learned what an amazing person she is and how I would want to be if I had to deal with something like MS,” Ashley said. “You can live with MS, adjust and grow from what has happened.”

To learn more about Do-it-Yourself events go to gatewaymssociety.org g Fundraising Events g Community Events.

HOMECOMING NOMINEE RAISES $ AND AWARENESS

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Ashley Armstrong, inspired by her mother Tracy Holmquest, raised more than $5,000 for the Chapter during her run for homecoming queen.

“Our lives completely changed. Ashely grew up really fast .”

— Tracy Holmquest

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Camp Hope

This brand new program is for youth ages 8-15 who have a loved one with MS or l ive with MS. The camp wil l include both recreational and educational activit ies to help young people affected by MS better understand the disease and ways to l ive with i t in their l ives. PROGRAMS & ACTIVITIES• Swimming• Canoeing• Pontoon boat rides• Adventure hikes • Fishing• Campfires• Hay rides• Evening entertainment• Arts and Crafts and other creative activities• Horseback riding• MS education and sharing groups

July 19-23 Touch of Nature

Makanda, IL

REGISTRATIONEach camper must complete an application before being accepted to Camp Hope. Upon acceptance, you will receive detailed information and an invoice. To request an application contact the Gateway Area Chapter at 800-344-4867, opt. 2 or www.mscamphope.org.

PROGRAM FEEThe fee of $140 per camper includes all meals, overnight lodging and activities. Scholarships are available. Call Suzanne at 314-446-4169 or 1-800-344-4867, option 2.

www.MScamphope.org | 800 344 4867

ABOUT TOUCH OF NATUREThe camp is just outside of Carbondale, IL, two and a half hours southeast of St. Louis. Touch of Nature is surrounded by the Shawnee National Forest, Crab Orchard National Wildlife Refuge, and Giant City State Park.

This program made possible through charitable grants from:

Dana Brown Charitable Trust

Our family has always embraced helping others and for my family, volunteering at Bike MS is a tradition. In July of 1990, my son Eric was about to begin his sophomore year in high school and needed community service hours to qualify for the National Honor Society at his high school.

On a whim, I opened the phone book to look up the local chapter of the National Multiple Sclerosis Society. I asked the person who answered about volunteer opportunities. Needless to say, she was full of information. She informed us that a bike ride to raise money was coming up in September and help was needed.

Eric and I, along with two friends who also needed community service hours, traveled to a hotel in Wentzville at 5:30 a.m. to help load cyclists’ gear into a truck.

So it started with four of us helping and every year we picked up more and more volunteers. The ride moved from its Hermann destination to Mexico, Missouri. Because the ride was turned into a circuit around Columbia, Missouri, instead of loading and unloading gear for the cyclists, our family

was asked to set up and run a rest stop.

We have been doing that ever since and every year we are able to recruit our own volunteers as we lose some to college, moves across country, or death, as in the case of ‘Granny on the Spot,’ my mom, who volunteered until her death at the age of 84.

Our favorite part is the enthusi-asm on the part of the cyclists and how they act like little kids when it comes to our homemade cook-ies every year. We have an army of family and friends who provide

us with our huge supply of cook-ies that last all weekend.

My son is now 36, an actuary for Towers Watson in Clayton, and has two sons of his own. Every year they look forward to donning pirate hats and helping at the rest stop. Over these 21 years, four generations have helped make Bike MS a family tradition and we’re proud to be part of the National MS Society.

To volunteer for Bike MS go to gatewaymsbikeride.org g Volunteer.

PAT MINUTE AND FAMILY BIKE MS VOLUNTEERS

THROUGH THE EYES

Volunteering for Bike MS has been a family tradition for Pat Minute and her family for 20 years.

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“Over these 21 years, four generations have helped make Bike MS a family tradition and we’re proud to be part of the National MS Society.”

Nineteen years ago my daughter, Stacey, was diagnosed with MS. The family was devastated by the news. I couldn’t be of much help since she lived

in Colorado, but I found out all the information

I could about the illness. I found out it wasn’t life threatening but there was no cure. My fiance’, Buddy, decided with me to take an active part in volunteering, specifically for the Deliver A Smile program.

As for my daughter, she thoroughly investigated the illness. She and her husband went to a neurologist and

got all the information. No crying, no whining, but a wonderful upbeat attitude of dealing with MS.

She has since had two lovely children and lives her life with hope and determination. She involves herself in painting and writing. She has excelled in both, with many awards.

Stacey will soon be taking a new oral form of medication called Gilenya. I’m hoping that this big breakthrough will help her, and we will soon find a cure for everyone who has MS.

I’m honored and blessed to have her as my daughter. I will do all I can to help create a world free of MS for her and the great people I’ve met who deal with this chronic illness every day.

To learn more about the Deliver A Smile program see page 22 or to go to gatewaymssociety.org g Programs & Services g Deliver a Smile Program.

OF VOLUNTEERS

JOAN LOWREY DELIVER A SMILE VOLUNTEER


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“Multiple sclerosis upended plans I had, forcing me to face uncertainty. I’ve learned to adapt and focus on what’s truly important to me.”

— Susan, diagnosed in 1995, with son Zach

dreams lost, dreams rebuilt

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Until recently, pediatric multiple sclerosis was an under recognized condition. Over the past five years, there has been more awareness of MS in children, which accounts for 5-10 % of all MS cases. Although pediatric MS symptoms commonly start during the early teenage years, they can occur in much younger children as well.

Initial symptoms can run the spectrum from mild and non-specific including eye pain, blurry vision, pro-longed and focal tingling, numbness and weakness to altered mental status and severe encephalopathy. It is important to differentiate pediatric MS from other monophasic demyelinating diseases, infection, migraine, vasculitis, CNS neoplasm, other pediatric metabolic disorders and white matter diseases.

Thorough history taking, physical exam and MRI may or may not be sufficient to make an accurate di-

agnosis, and visual evoked potentials, spinal tap and other tests may be required in difficult cases.

Some disease modifying therapies available for the adult population, including interferon (IFN)β therapy and Glatiramer acetate, seem to be safe and well tolerated in children accord-ing to small retrospective studies. Unfortunately, we do not have any safety data yet for oral MS drugs in children.

Children with MS should be aware of early depression symptoms and cognitive problems which can have adverse consequences on school performance and daily social life. Obtaining an Individualized Educational Plan (IEP) at school may be necessary to accommodate some children. It is very important to seek help from a counselor, a psychologist or a psychiatrist, as the depressive symptoms can be helped by appropriate therapeutic intervention. Having a positive attitude, compliance with medication, seeking help with depression when necessary, keeping oneself fit with regular exercise and healthy diet are all important in dealing with multiple sclerosis at such a young and tender age.

To learn more about pediatric MS go to nmss.org g About MS g Pediatric MS.

Soe S. Mar, MD Assistant Professor of Neurology and Pediatrics Director, Pediatric Headache Center Director, Pediatric Onset Demyelinating Disease Center St. Louis Children’s Hospital Washington University School of Medicine

ASK THE PROFESSIONALPATIENT QUESTION: Is MS becoming more prevalent in children?

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How did your father’s MS affect you?I was just graduating high school and preparing to leave for college and it definitely made me more nervous to leave. At that point we didn’t really know how he was going to be impacted by the disease. However, being the role model that he is; he made sure to put a positive life lesson in his di-agnosis and told the kids you have to live every day to the fullest because you never know when life will take a drastic turn on you.

How did his MS affect your relationship with him? His diagnosis definitely brought us closer together. I ended up getting a minor in Risk Management and Insurance so I could come and work with him. We now work together on a daily basis. Since we’re together much of the time I see the challenges he deals with every day. I can tell when he struggles to get in and out of the car because of his balance or weakness in his legs. Without the amount of time we spend together I don’t think I would appreciate how stoically he handles the changes in his physical abilities. I have never once heard him complain on days he doesn’t feel as strong as he would like to. And most importantly he never lets MS keep him from doing what he wants. Getting to see your dad never let anything stand in his way is a great life lesson. He always pushes through or creates a new way to accomplish whatever it is that he wants.

What does serving on the Board mean to you?It’s great to see exactly where the money is going that we help to raise. I think it gives us both a lot of encouragement to see the amazing advances that are currently being made in the fight against MS.

What have you learned in your experience with the Chapter?You can get very nar-row vision on a disease when you are only seeing how it impacts the person you know. Through the Chapter I have seen all the various ways the disease can impact a person. It has helped me understand the illness inside and out and what a personal battle it is because it affects each individual so differently. It’s also great to see how much people really care about making a difference. For so many people involved with the Chapter they don’t have a family member or a close friend with MS, but strictly give their time, money and connections because they have met someone that is dealing with the disease.

What would you tell young people who have a par-ent who has been diagnosed with MS?Being diagnosed now is so different than being diagnosed 15 or 20 years ago. There have been so many advances made in treatments it is unbeliev-able. An MS diagnosis does not have to be the life altering/ending diagnosis it used to be. I would say to the kids, try to be understanding and have patience because so many of the symptoms are not visible to the outside world. At the same time I think a lot of the reason my dad has had so much success with treatments is because his family always kept pushing him to never give up and to do as much as he could to maintain his old lifestyle. I think it’s important to find a balance between patience and encouragement.

ASK THE PROFESSIONALPATIENT QUESTION: Is MS becoming more prevalent in children?

WHY DID I JOIN THE MOVEMENT?

Kristen Gully Holton


2011 BOA

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Kristen Gully Holton has served on the Chapter’s Board of Trustees for two years and has been an MS Corporate Achiever since 2004. Her father, Lyle, was diagnosed with MS when she was a senior in high school and he also serves on the board.

2,000 GET DIRTY FOR MS More than 2,000 people got down and dirty for MS at the Chapter’s second annual Mud Run MS at Harrah’s St. Louis on Saturday May 7. The event grew from 522 participants and $109,000 raised last year to 2,028 participants and more than $413,000 raised this year!

WOMEN ON THE MOVE LUNCHEON RAISES $80,000On May 5, the Gateway Area Chapter held its third annual Women on the Move Luncheon at the Ritz-Carlton St. Louis raising more than $80,000 through ticket sales, sponsorship, a raffle and money donated at the event. KMOV News 4’s Claire Kellett served as emcee and author Jacquelyn Mitchard was the guest speaker. The Chapter honored Dr. Thy Huskey, Jennifer Luner and Viola McNeill as the Women of Courage. The Chapter would like to thank its dedicated committee for all of their great work to make the event a success.

VOLUNTEERS NEEDED Nearly 800 volunteers are needed to help keep our 3,300 cyclists safe, happy and moving during the Bike MS: Express Scripts Gateway Getaway Ride September 10-11 in Columbia, MO. Volunteers are needed for a variety of roles. Go to gatewaymsbikeride.org g Volunteer to learn more and to register.

LOOKING FOR A FEW GOOD MEN & WOMEN AT MARINE WEEK Marine Week 2011 is coming to St. Louis, June 20-26, showcasing the unique characteristics of America’s Corps through more than two dozen events where attendees can watch combat demonstrations, climb aboard aircraft and ground equipment. On June 24, the Marines and the Gateway Area Chapter are partnering to assist a single woman living with MS in Foristell, MO. Opportunities are available to work alongside Marines as we help to keep her safely in her home. If you’d like to volunteer, donate materials, or help in another way, please contact Sandra Putney at 314-446-4175. Go to http://www.marines.mil/community/marineweekstlouis/Pages/home.aspx.

2011

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ANSWER KEY ON PAGE 16

MS CROSSWORD PUZZLE Note: Words Crossing Letter Provided. There are no spaces between two words. These Letters Provided – A B F R

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1 This Resource is one of the countless ways to engage other people. It involves being at a Chapter Training program and learning something new about MS.

2 This is one of several things that a MS Ambassador does; it involves a meeting with sponsors.

4 In the effort to educate and encourage others to join the MS movement to increase MS awareness you should do this _________.

7 To be a successful volunteer, the Chapter wants to ensure that you know and have these to turn to when you need them.

8 The volunteers and resources are mainly for the sole purpose of ______ ______ which is also the topic of this puzzle.

11 This internet resource allows anyone to watch Gateway Area Chapter’s videos.

12 In an effort to engage and encourage others to join the movement to create a world free of MS, you must first ________.

13 To help you learn more about MS, do this with your doctors and other health professionals.

15 This is an awareness resource provided by the Gateway Area Chapter where you can visit and purchase MS specific items to use or give away to others.

17 A resource that is a very good opportunity to discuss MS; is to make this type of treats ___________ for your work place, family, classmates or friends.

18 This type of volunteer _______________, is a group of dedicated volunteers that educate, engage, and encourage others.

19 This is what you would want to do for Bike and Walk MS.

22 The topic of this puzzle is _______.

24 By sharing your knowledge and information with the public you are ____________.

26 When you want someone to join you in something, you do ____________ them.

29 Writing on Facebook about MS or your involvement with the Gateway Area Chapter is called _________.

ACROSS

3 This resource lets you use your body to creatively to express your involvement with MS.

5 This resource is one of the countless ways to engage other people, it involves ______ ing an MS informational table at your workplace.

6 The Gateway Area Chapter uses this to ensure that you have the resources by providing you with this type of learning program.

9 You want to be an MS volunteer, or you are an MS volunteer in need of Chapter’s many resources on and about MS; all you have to do is just ______.

10 Doing this _____ with family and friends is one of several ways to raise awareness of MS.

14 These ______ are items provided by the Gateway Area Chapter that need to be filled out.

16 Are you interested in spreading awareness, educating others and/or sharing your story about MS? If you would like to get involved then just ____________.

20 Another way to share information online is to create a BLOG on your ___________.

21 By setting up a booth, and sharing information at a Health Fair you ___________.

25 The act of putting the Gateway Area Chapter on your MySpace, FaceBook, or Linkedin is called__________.

27 The volunteers who represent the Chapter through speaking engagements such as community groups, corporations, and media are called the ____________ ____________.

28 This type of communication over the internet that commonly gives an address and allows you to get mail is _________.

30 One of the best known Resources you have is to ______ your MS story online>

31 To get someone to join you, or to become an MS volunteer, then you would __________ them>


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Although multiple sclerosis occurs most commonly in adults, it is also diagnosed in children and adolescents. Estimates suggest that 8,000-10,000 children (defined as up to 18 years old) in the United States have multiple sclerosis, and another 10,000-15,000 have experienced at least one symptom suggestive of MS.

Pediatric MS Facts:• Studies suggest 2 to 5% of all people with MS have a history of

symptom onset before age 18.• Diagnosis in children is more challenging than in adults due to

the frequency of other childhood disorders with similar symptoms and characteristics.• Increasing evidence suggests that the disease-modifying therapies (FDA approved for use in adults)

are safe and well tolerated in children; however large clinical trials are needed to assess treatment efficacy.

• Most symptoms of MS seen in children are similar to those seen in adults. There are, however, symp-toms experienced by children that are not typical in adults, such as seizures and mental status chang-es (lethargy).

• Increasing evidence suggests a slower disease course in children with MS, but significant disability can accumulate at an earlier age compared to individuals with adult onset MS.

• Psychosocial consequences of MS in children and adolescents may affect academic performance, family relations, and specific adolescent issues including self-image and relationships with peers. An evaluation by a trained professional can help determine appropriate interventions.

• Pediatricians may not be familiar with MS because they are not expecting to see it in children.

Because of the critical need to better understand pediatric MS, the National MS Society established the first-of-its-kind network of Pediatric MS Centers of Excellence. Each of the six centers offers comprehen-sive services through multidisciplinary teams including pediatric and adult MS experts. Financial assis-tance is available for travel, accommodations and care so families can access these services, regardless of their ability to pay or proximity to one of the centers.

ABOUT PEDIATRIC MS

Center for Pediatric-Onset Demyelinat-ing Disease at the Children’s Hospital of

AlabamaBirmingham, AL 35233Phone: (205) 996-7633

Web: www.uab.edu/cpodd

UCSF Regional Pediatric MS CenterSan Francisco, CA 94117Phone: (415) 353-3939

Web: www.ucsfhealth.org/pedsms

Partners Pediatric MS Center at the Massachusetts

General Hospital for ChildrenBoston, MA 02114

Phone: (617) 726-2664Web: partnersmscenter.org

Mayo Clinic Pediatric MS CenterRochester, MN

Phone: (507) 293-0378Web: www.mayoclinic.org/

pediatric-center

Pediatric MS Center of the Jacobs Neurological Institute

Buffalo, NY 14222Phone: (877) 878-7367Web: www.pedms.com

National Pediatric MS Center at Stony Brook University HospitalDepartment of Neurology

Stony Brook, NY MS,CPNP

Phone: (631) 444-7802Web: www.pediatricmscenter.org

Alexis, diagnosed in 2009, with mother Mary

TOLL FREE NUMBER 1 800 344 4867 | 15w w w . g a t e w a y m s s o c i e t y . o r g 15

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Although MS is typically thought of as an adult-onset disease, some children and teens have been diag-nosed. Children and Teens with MS: A Network for Families offers educational and psychosocial support for families living with MS. The Network is a collaborative effort of the National MS Society and the MS Society of Canada. Together we recognize the unique needs of these families.

Students with MS & the Academic Setting: A Handbook for School Personnel is an informational guide for school staff working with children and teens with MS. The handbook includes a discussion on the issues children and teens with MS may face, recommended accommodations and modifications in the school setting, transition issues, as well as basic information on MS.

The Network currently offers the following resources specifically for this special population: Parents’ HandbookKids Get MS Too: A Handbook for Parents Whose Child or Teen has MS is an informational handbook containing a wide range of information pertaining to pediatric MS. The handbook was written by special-ists in childhood MS.

Mighty Special Kids—An Activity Book for Children with MSAn activity book for children ages 5-12 with MS. The book includes educational games, activities, and age-appropriate articles to help children better understand their diagnosis.

Virtual Community for ParentsThe Network connects parents through a moderated listserv where they can share concerns and informa-tion.

Information and ReferralYou can receive information about MS and local resources from your chapter by calling 1-800-344-4867.

Pediatric MS: Understanding for Today, Hope for Tomorrow A 20+ minute DVD that provides an overview of pediatric MS and how the Society is addressing the needs through programs and services and the Network of Pediatric MS Centers of Excellence. The piece includes interviews with three families with a child with MS, healthcare professionals from the six Pediatric MS Centers of Excellence, and Society staff and volunteers. The DVD is hosted by Society volunteer Channing Barker, a young adult who was diagnosed with MS in her teens.

Registration InformationFor information specific to pediatric MS or to register for the Network, call 1-800-344-4867 or email [email protected].

SOCIETY OFFERS RESOURCES FOR KIDS WITH MS

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

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MS CROSS WORD PUZZLE ANSWER KEY

Upcoming DiY Events

MS 10K Run Saturday, July 2, 7- 8 a.m. St. Louis Community College Meramec It starts at Big Bend Rd., makes a scenic rolling loop through Kirkwood, and finishes on the campus of Meramec CC. To register, go to www.active.com and search “MS 10K” or print off the attachment and mail the entry to MO Running Race Mgmt., P.O. Box 230112, St. Louis, MO 63123. Registration is $25 if received by June 11; $30 June 12-25, $40 June 26-July 2.

Personalized Wine Glasses What better way to celebrate a special occasion than with a glass of wine. B Creations will create a personalized wine glass to commemorate the special event. B Creations donates a percentage of its proceeds from every glass created to the Chapter. Go to bcreationsglasses.com

Your organization can make the difference! Every year individuals, organizations, clubs, and busi-nesses rally together to help in the joining the movement towards a world free of MS. These “Do-it-Yourself” or DiY events are run independently from the Chapter. The possibilities have become end-less. From Golf Tournaments to BBQ’s, dances to scavenger hunts, company dress down days to dining for MS, anyone can join the movement. By coordinating your group’s very own event, you help bring research and programs to over 400,000 people in The United States. This is how…

Step 1: Determine what type of event you would like to put together.

Step 2: Review our Event Guidelines.

Step 3: Complete a Do-it-Yourself Event Registration Form online or print the form and submit it to the Gateway Area Chapter for review.

Step 4: Begin Planning Your Event!

Contact Amanda at (314) 781-9020 or 800-344-4867 at [email protected].

ST. LOUIS Hilton Frontenac

1335 S. Lindbergh Blvd.Saint Louis, MO

63131

CAPE GIRARDEAUDrury Lodge

104 S. Vantage DriveCape Girardeau, MO

63701

SOUTHERN ILLINOISHoliday Inn

2300 Reed Station PkwyCarbondale, IL

62901

MID-MISSOURIActivity Recreation

Center1701 West Ash Street

Columbia, MO 65203

METRO EASTFour Points Sheraton

319 Fountains ParkwayFairview Heights, IL

62208


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Saturday, June 25 - Sunday, June 26CONFERENCE LOCATION: Drury Lodge104 South Vantage Dr.Cape Girardeau, MO 63701

All lodging, meals and workshop activities are included in the registration fee. Limited fee waivers are available for registration fee and transportation.

The National MS Society invites you and your spouse/partner to a workshop for couples living with the challenges of MS.

This dynamic program will help you:•Break patterns that prevent effective

communication•Apply successful problem-solving tech-

niques• Work as a team to manage MS and your

relationship

Kim, diagnosed in 1986

OVERNIGHT LOCATION:Victorian Inn and Suites3265 William St.Cape Girardeau, MO 63701Cost: $40 per coupleFacilitator: Karen Tripp Licensed Professional Counselor

Relationship MattersCape Girardeau, MO

Saturday, June 18, 201110 a.m. - 2 p.m.COST:$10/person. Fee waivers available.Live at St. Louis location.Via live video to all locations.

Progressive MS Symposium

Program includes:• Speaker: Dr. Lauren Krupp, Neurologist, Co-

Director, MS Center at Stony Brook Univer-sity in New York

• Lunch •Resource Fair •Breakout Sessions: Each site will have guest

speakers on bowel & bladder, caregiver sup-port, physical and occupational therapy

This program will directly address the issues of those living with progressive MS and research in the field of progressive MS.

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Persons with MS face a multitude of physical, mental, and emotional challenges on a daily basis. For many individuals, their disease is constantly changing and affects their self-esteem and management of all facets of their lives. The transition from “what was” to “what is” can be overwhelming. Creative art can enhance the lives of those living with MS.

Creative art activities with hands-on participation (no previous experience is necessary):

• Beading – learn to make jewelry and create a bracelet to take home

• Collage – express yourself in times of change• Watercolor - experience playing with

watercolor • Funky knit scarf - beginner project hosted by Nancy Monson.

Nancy is a freelance writer and editor and a life-long crafter. All participants will receive her book, Craft to Heal, Soothing Your Soul with Sewing, Painting, and Other Pastimes, a self-help book about the stress-reducing benefits of pursuing a hobby you love to all participants.

Saturdays, June 25, July 9, July 16, July 23 (no class July 2)10 a.m. – NoonNational MS Society office1867 Lackland Hill ParkwaySt. Louis, MO 63146Registration Deadline: June 17Cost of series: $20 (includes all art supplies)

Fee waivers available for program and transportation.*Group size limited to 30 individuals living with MSFor outcome measurements, must attend ENTIRE series (4 programs total)

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Hope & Healing — A Creative Art Program Series

Creative Art Therapy Dinner ProgramFriday, July 226-8:30 p.m.The Heights Community Center8001 Dale AvenueRichmond Heights, MO 63177If you are unable to attend the Creative Art Program Series but would like to learn about creative art therapy and how you can incorporate art into your life, please join us for this free interactive dinner program. Guest speaker: Nancy Monson, freelance writer and editor and life-long crafter. (register separately from series)


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

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

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

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

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

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

Christmas in July — Deliver A Smile

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

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

August 11Location: TBA Edwardsville, ILTime: 6:30-8:30 p.m.Registration Deadline: August 1

This program will feature guest speaker Dr. Barry Singer. A three-course dinner will also be included with this free program. Space is limited so make your reservation today!

New ConnectionsImani, diagnosed in 2006

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Camp HopeThis brand-new program is just for youth ages 8-15 who are affected by MS. It includes recreational and educational activities to help young people better understand the disease and ways to live with it in their lives. Programs and activities will be available for children living with MS and for children who have a parent or other relative living with MS. Campers are encouraged to bring a guest to share in the fun! Activities include:•Swimming, canoeing, and pontoon boat rides•Adventure hikes and fishing•Campfires, hay rides, and evening entertainment•Arts and crafts and other creative activities•Horseback riding•MS education and sharing groups

July 19-23Touch of Nature Environmental Center Southern Illinois University1206 Touch of Nature RoadMakanda, Illinois 62958 (near Carbondale)

Program Fee: $140 per child. The fee includes all meals, overnight lodging, and activities.

Registration: Each camper must complete an application before being accepted to Camp Hope. Upon acceptance, you will receive detailed information and a billing invoice. Call 800-344-4867 option 2 or visit mscamphope.org. The deadline is June 19.

Research MS OBJECTIVES: MS specialists will provide up-to-date information on: •Research & new therapies•New data on disease modifying medication for MS FREE PROGRAM INCLUDES LUNCH

JEFFERSON CITY, MOSaturday, August 20, Noon - 2 p.m. Capitol Plaza Hotel415 McCartyJefferson City, MO 65101

REND LAKE, ILSaturday, August 20, Noon - 2 p.m. Rend Lake Resort & Conference Center11712 East Windy LaneWhittington, IL 62897

CAPE GIRARDEAU, MOSaturday, August 27, Noon - 2 p.m.Drury Lodge104 South Vantage DriveCape Girardeau, MO 63701

FAIRVIEW HEIGHTS, ILSaturday, August 27, Noon - 2 p.m.Four Points Sheraton319 Fountainview ParkwayFairview Heights, IL 62208

This program made possible through charitable grants from:

Dana Brown Charitable Trust


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Explore Learn Online videos:

Basic Facts of MS, Treatments, Symptom Management, Healthy Living, Progressive MS, Research, Family Life and Relationships, Employment and Insurance, and En Español.

On the first and third Thursdays of each month, two new videos are added. An update on disease-modifying therapy is generally added once a year.

In a hurry?

Visit Daily Minutes. In 60 seconds you’ll get some basics on Who Gets MS, What is Myelin, What is Relapsing-Remitting MS– and more. Click on the Daily Minute link in the blue box at nationalMSsociety.org/mslearnonline.

Has Multiple Sclerosis Affected You?Join us for this free and interactive live event for people with MS, their families and carepartners.

At these free programs you will:•Interact with a leading MS expert and others living with MS.

•Learn about a therapeutic option for MS.

•Enjoy complimentary food.

THREE DATES THURSDAY, JULY 14, ST. LOUIS, MO

Location: St. Louis Marriott West 660 Maryville Centre Drive St. Louis, MOTime: 7 p.m.

THURSDAY, AUGUST 18, COLUMBIA, MOLocation: Holiday Inn Executive Center 2200 I-70 Drive Columbia, MO 65203Time: 7 p.m.

MONDAY, SEPTEMBER 12, ST. LOUIS, MOLocation: St. Louis Marriott West 660 Maryville Centre Drive St. Louis, MOTime: 7 p.m.

REGISTRATION: Online: ampyraseminars.com Phone: 1-800-397-8082

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

Tracey, diagnosed in 2005

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Thursday, September 227-9 p.m.

DoubleTree Hotel and Conference Center16625 Swingley Ridge RoadChesterfield, MO 63017

KEYNOTE SPEAKER:Dr. Michael RackeProfessor and Chairman of NeurologyThe Helen C. Kurtz Chair in NeurologyDepartment of Neurology, The Ohio State University Medical CenterColumbus, OH

LEARNING OBJECTIVES: • Understandingnewdrugsandtechnology.• Learnaboutnewtherapiesandtreatments

being developed and how they affect the immune system in different ways.

• Understandingdifferentaspectsoftheimmunesystem and how it works

• Reviewingthescienceandunderstandingthe risks in taking a new drug or changing treatments.

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

John L. Trotter Research Program

Dr. Racke earned his medical degree from the University of Medicine and Dentistry of New Jersey Medical School.

He completed his neurology training at Emory University in Atlanta and a neuroimmunology fellowship at the National Institutes of Health.

Dr. Racke won a Harry Weaver Neuroscience Ju-nior Faculty Award from the National MS Society and the Young Investigator in Multiple Sclerosis of the American Academy of Neurology and Re-search Foundation while working at Washington University in St. Louis.

He served as Vice Chairman of Neurology Re-search and professor in the Center for Immunol-ogy at the University of Texas Southwestern Medi-cal Center.

In July, 2006 he became the chair of neurology at The Ohio State University School of Medicine.

His research focuses on understanding how inflammation gets established in the central nervous system and developing novel therapeu-tics by studying the animal model experimental autoimmune encephalomyelitis. His research also centers on the pathogenesis of MS.

He has served on scientific advisory committees for the National MS Society, National Institutes of Health, and the Hertie Foundation as well as on several editorial boards.

About D r . M i c h a e l R a c k e


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The colors of fall will welcome you and your guests to a relaxing and rustic family getaway. Located approximately 2-1/2 hours from St. Louis in Makanda, just outside of Carbondale, Ill., Touch of Nature offers a secluded and accessible retreat.

WEEKEND ACTIVITIES INCLUDE:g Accessible pontoon boat rides g Accessible hayridesg Arts & Crafts for all agesg Campfire and s’moresg Accessible horseback and pony ridesg Owl prowling and catch and release fishingg ‘Kids Only’ adventure activities and Halloween

fung CarePartner social programsg ‘How to Stay Active’ class for people with MS

Early registration (before Oct. 5)$70/per person

Regular registration (after Oct. 6) $85/per person

Live in the area? Come join us for the day!Day only option: $25 per person (available for Saturday or Sunday).

A limited number of fee waivers are available for this program and/or transportation. Please fill out the registration form to request a waiver. Kids 3 and younger are free. Registration includes meals, activities and lodging.

Registration Deadline: October 10

Family Weekend Touch of NatureOctober 14-16 Makanda, IL (near Carbondale)

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TALK MS GROUPSMISSOURI

Cape Girardeau 3rd Saturday 10 a.m.

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

Sharon (573) 332-8148

Columbia Call for DatesRusk Rehabilitation Center315 Business Loop 70 WestColumbia, MO 65203

Denise (573) [email protected]

Crystal City/Festus 2nd Tuesday 1 p.m.

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

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

Fulton 1st Wedneday 3 p.m.

At Home Real Estate2606 North Bluff, Fulton, MO 65251 Cindy (573) 220-0177

Jefferson City 1st Monday 6 p.m.

Coca-Cola Bottling, Meeting Room605 Washington, Jefferson City, MO 65109

Chris (573) 645-0130 [email protected]

New London 2nd Monday 7 p.m. Call for Location Debby (573) 267-3365

[email protected]

St. Charles 3rd Sunday 3 p.m.

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

Washington 3rd Monday 6 p.m.

St. Peter’s United Church of Christ, 20 East 5th St., Washington, MO 63090 Anne (636) 359-6037

West Plains 3rd Wednesday 5 p.m.

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 p.m.

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

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

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

West County 2nd Tuesday 7 p.m.

Living Word United Methodist Church17315 Manchester Rd., Wildwood, MO 63038

Walt (636) 256-9171Barb (636) 227-4889

Generation OptiMiSTic 1st Saturday 10 a.m.

NMSS Office Gateway Area Chapter 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Michelle (636) 447-5407

N E W Location!


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MISSOURI

Cape Girardeau 3rd Saturday 10 a.m.

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

Sharon (573) 332-8148

Columbia Call for DatesRusk Rehabilitation Center315 Business Loop 70 WestColumbia, MO 65203

Denise (573) [email protected]

Crystal City/Festus 2nd Tuesday 1 p.m.

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

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

Fulton 1st Wedneday 3 p.m.

At Home Real Estate2606 North Bluff, Fulton, MO 65251 Cindy (573) 220-0177

Jefferson City 1st Monday 6 p.m.

Coca-Cola Bottling, Meeting Room605 Washington, Jefferson City, MO 65109

Chris (573) 645-0130 [email protected]

New London 2nd Monday 7 p.m. Call for Location Debby (573) 267-3365

[email protected]

St. Charles 3rd Sunday 3 p.m.

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

Washington 3rd Monday 6 p.m.

St. Peter’s United Church of Christ, 20 East 5th St., Washington, MO 63090 Anne (636) 359-6037

West Plains 3rd Wednesday 5 p.m.

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 p.m.

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

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

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

West County 2nd Tuesday 7 p.m.

Living Word United Methodist Church17315 Manchester Rd., Wildwood, MO 63038

Walt (636) 256-9171Barb (636) 227-4889

Generation OptiMiSTic 1st Saturday 10 a.m.

NMSS Office Gateway Area Chapter 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Michelle (636) 447-5407

ILLINOIS

Alton/River Bend 3rd Tuesday 7-9 p.m.

The United Presbyterian Church, 2550 Rock Hill Rd., Wood River, IL 62095 Amy (618) 235-4226

Belleville/ O’Fallon 2nd Sunday 2:30 p.m.

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

Central Illinois 4th Monday 7 p.m.

Richland Memorial Hospital 800 East Locust St., Olney IL 62450 Tony (618) 392-7920

S’myelin Gang of Litchfield 4th Tuesday 6:30 p.m.

Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056 Meredith (217) 556-4418

Metro East June 22August 4

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

Diane (618) 235-8823 [email protected]

Southern Illinois 2nd Tuesday 5 p.m.

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

Crissy (618) 937-2935

SPECIALIZED GROUPS

Men’s Chat Last Tuesday 7 p.m. Telephone group Joe S. [email protected]

MS Fun, Friends & Food August 26 p.m.

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 a.m.

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

Penny (314) 652-4100 ext. 63274

CarePartner and Family Group

3rd Wednesday 7 p.m.

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

[email protected]

Progressive MS Chat First Thursday

2 p.m. Group meets via telephone. Mary DuParriRegister by calling 800-344-4867

TALK MS GROUPS

NEW GROUP!

Upcoming Meet & Greet Dinner Programs Chapter staff will be attending to let you know about National MS Society programs, services, events and volunteer opportunities available to you. This is also a great way to meet other people living with MS and to learn about Talk MS groups in your area. 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.

Lisa (618) 258-0615

Hannibal/New LondonJune 28, 6 p.m.

Fiddlestiks Food & Spirits

8945 Highway 36 Hannibal, MO 63401

Mid-St. Louis CountyAugust 13 at 6 p.m.The Old Spaghetti

Factory17384 Chesterfield

Airport Rd.Chesterfield, MO 63005

NEW GROUP!

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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!

The Chapter offers financial assistance for attendance and transportation to therapeutic recreation programs.

MS Aquatics

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

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

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

Chesterfield JCCContact: Sheena Koster (314) 442-3495

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

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

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

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

Show Me AquaticsContact: Carolyn (636) 896-0999

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

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

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

Washington Four Rivers Family YMCAContact: Ann (636) 239-5704 Wellbridge Athletic Club –( Clayton) Contact: Trudy C. (314) 746-1500 x1551

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

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

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

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

SOUTHERN AND METRO ILLINOISEdwardsville YMCA Contact: Pam (618) 656-0436

Maryville YMCA Contact: Julie (618) 346-5600

John 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

To register for an aquatics, yoga or Tai Chi class, please call the number listed. You do not register directly through the Chapter.


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Yoga SitesST. LOUIS:

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

Yoga St. LouisIyengar Yoga Class3305 Jamieson Ave.St. Louis, MO 63139Call: 314-645-9785www.iyengaryogastlouis.com

St. John’s Mercy Medical Building 12348 Old Tesson Rd. , St. Louis MOInstructor: Linda Whitney Call: 314-729-0181

Tuesdays February 15 - April 12April 19 - June 7 5:30-6:30 p.m. (Beginner)7-8 p.m. (Gentle)

Thursdays February 17 - April 14April 21 - June 9 9:30-10:30 a.m. (Beginner)

Saturdays April 23 - June 11 9-10 a.m. (Beginner)**Cost: $54 for 6 weeks, $72 for 8 weeks.

Dragonfly Health Spa & Yoga 1272 A Jungermann Road St. Peters, MO 63376Call: 636-498-5544Mondays Restorative Yoga: 10-11 a.m.Gentle Chair/Floor Yoga: 11:30 a.m. - 12: 30 p.m. Core Strengthening Yoga: 6:30-7:30 p.m.Tuesdays Open Level Yoga: 6-7 p.m.Open Level Yoga: 7:15-8:15 p.m.Wednesdays Meditation Class: 6:30-7:30 p.m.Thursdays Open Level Yoga: 7-8 p.m.Saturdays Open Level Yoga: 9-10 a.m.

METRO & SOUTHERN ILLINOIS

Sukha Yoga Center18 South High St., Belleville, IL 62220Instructor: Sarah FraserCost: call for class times/feesContact: Sarah (618) 236-9642Web site: www.sukhayogacenter.comOne-O-One Yoga101 South GrahamCarbondale, IL 62901Contact: Sarah Miller (618) 457-8186Cost: Call for class times/feesWeb site: www.center101yoga.comEdwardsville YMCA1200 Esic Drive, Edwardsville, IL 62025618-656-0436Maryville YMCA1 Town Center Drive, Maryville, IL 62062618-346-5600

MID-MISSOURI

Elm Street Yoga904 Elm St. Suite 210, Columbia, MO 65201www.elmstreetyoga.comTuesdays, 1:15-2:15 p.m.Thursdays, 4:30-5:30 p.m.Instructor: Linda LutzCost: $35 for 5 classesClass size limited to six peopleContact: Linda (573) 441-8566 or [email protected]

SOUTHEAST MISSOURI

PARC Fitness Center2620 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

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

Columbia, MOYoga & Tai Chi

NMSS Office4816 Santana Circle Columbia, MO 65203

Contact: Kimberly at 1-800-344-4867 or [email protected]

Tai ChiMondays: 10-10:45 a.m.Instructor: Mary Cruise

YogaFridays, 11:45 a.m. - 12:45 p.m.Instructor: Linda LutzCost: $35/5 classes or $10/class

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Beat the HeatThe hot days of summer in Missouri and Illinois are a time to take extra precaution in everyday activities as heat may increase symptoms for some people living with MS. Over-heating can cause a pseudoexacerbation, a temporary aggravation of MS symptoms that have occurred before. Taking measures to cool the body to a normal temperature will relieve these symptoms. Here are some ways for you to beat the heat!

Strategies for Staying COOL:• Stay in an air-conditioned environment as much as possible when temperatures and humidity are high.

• Take a cool shower or bath to “pre-cool” before exercise.

•Wear short-sleeved, loose fitting clothing. Moisture wicking fabrics are beneficial.

•Drink extra water especially during extended times outside.

•Modify your exercise routine to be outside during cooler times of the day or consider exercise in a cool pool.

•Utilize cooling devices such as vests and neck wraps. Plan ahead for extra ice packs for longer activities.

•Purchase an air conditioner. It may be tax deductible with proper documentation from your doctor.

RESOURCES:Multiple Sclerosis Association of America (MSAA) for Cooling Vests: www.msassociation.org/programs/cool-ing

United Way 2-1-1: www.211.org or dial 2-1-1

National MS Society Information Resource Center: 1-800-344-4867, option 1


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Dial. Listen. Learn. The Wellness Network connects people who have an interest in or who are actively participating in exercise programs through a monthly teleconference. Upcoming topics include:June 23 Alternative Massage Therapy Speaker: Vicki Kemner, LMT Dragonfly Health & Spa

July 28 Emotional Well- Being Speaker: Mary Duparri, MA, LPC August 23 Keep Your Memory Sharp Speaker: Pascale Michelon, PhD Director, The Memory Practice

Sept. 15 Strength Training & MS Speaker: Christy Connoyer Head Softball Coach Saint Louis University

These monthly calls are an opportunity to share ideas and encouragement about exercise and include special guest speakers.

The teleconferences are facilitated by Toni Kodner, a volunteer with extensive knowledge of MS and wellness, and are held from 7-8 p.m.

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.

Wellness Network

Mark your calendars on every second Monday of the month for the Midwest Teleconference Series. The series topics from March through June are:Navigating Through RelationshipsPart I: Taking Care of Yourself While Taking Care of OthersSpeaker: Karen TrippLicensed Marriage and Family CounselorDate/Time: June 13, 2011, 7-8 p.m.

Navigating Through RelationshipsPart II: Good Grief! How to Cope with Loss Speaker: TBADate/Time: July 11, 2011, 7-8 p.m.

Sleep & MS: When to DozeSpeakers: Consultants in Neurology Date/Time: August 8, 2011, 7-8 p.m.

Symptom Management: Optic NeuritisSpeaker: Dr. John PulaDate/Time: September 12, 2011, 7-8 p.m.

Midwest Teleconference Series




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JUNE 20113-5 Challenge Walk MS, St. Charles County, MO4 Family Evening at the Ballpark, Marion, IL6 Carepartner Teleconference8 Young Professionals Meeting11 Family Evening, Columbia, MO13 Midwest Teleconference Series18 Progressive MS Symposium23 Wellness Network25 Creative Art Therapy Program, St. Louis, MO25-26 Relationship Matters, Cape Girardeau, MO28 Talk MS Meet & Greet, Hannibal/New London, MO

JULY 20119 Creative Art Therapy Program, St. Louis, MO11 Midwest Teleconference Series16 Creative Art Therapy Program, St. Louis, MO19-23 Camp Hope, Makanda, IL22 Creative Art Therapy Dinner Program, St. Louis, MO23 Creative Art Therapy Program, St. Louis, MO28 Wellness Network

AUGUST 20118 Midwest Teleconference Series11 New Connections, Edwardsville, IL13 Talk MS Meet & Greet, Mid-St. Louis County20 Research MS, Jefferson City, MO & Rend Lake, IL20 Walk MS, O’Fallon, IL25 Wellness Network27 Research MS, Fairview Heights, IL & Cape Girardeau, MO

SEPTEMBER 201110-11 Bike MS: Express Scripts Gateway Getaway Ride

Columbia, MO11 Walk MS, Union County, MO12 Midwest Teleconference Series15 Wellness Network17 Walk MS, Bootheel Area, MO22 John L. Trotter Research Program, St. Louis, MO24 Walk MS, Washington, MO24 Walk MS, Mt. Vernon, IL

Chapter Calendar

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

MS Connection © 2011A quarterly magazine published by the National Multiple Sclerosis Society, Gateway Area Chapter.

Chapter President • Phyllis RobshamNewsletter Editor • Joe Cavato Writers • Joe Cavato • Karen Dabrowski• Kim Fitzsimmons • Dan Friedman • Keith Hoerner • Joan Lowery • Dr. Soe Mar 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

PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY


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Program Registration

Name _______________________________

Address ______________________________

___________________________________

City/State/Zip __________________________

Home phone ___________________________

Work phone ___________________________

E-mail ______________________________

Guest Names and Ages _____________________

___________________________________

Does anyone in your party use a mobility device? ______

Would you like to request a fee waiver? ___________

Do you prefer a vegetarian meal? _______________

Date of Diagnosis ________________________ Payment Information( ) Fee waiver requested( ) Check enclosed payable to MS Society( ) Visa ( ) MasterCard ( ) Discover ( ) Am. ExpressCard # ___________________________Expiration Date: ______________________

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

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

[ ] CarePartner Teleconference June 6 COST: FREE PROGRAM[ ] Family Evening, Columbia, MO June 11 COST: FREE PROGRAM[ ] Navigating Through Relationships Part I: Teleconference June 13 COST: FREE PROGRAM[ ] Progressive MS Symposium June 18 COST: FREE PROGRAM[ ] Wellness Network - Alternative Massage Therapy June 23 COST: FREE PROGRAM[ ] Relationship Matters Enrichment Course, Cape Girardeau, MO June 25-26 COST: $40/COUPLE[ ] Navigating Through Relationships Part II: Teleconference July 11 COST: FREE PROGRAM[ ] Camp Hope, Makanda, IL July 19-23 COST: $140/CAMPER[ ] Creative Art Therapy Dinner Program, St. Louis, MO July 22 COST: FREE PROGRAM[ ] Wellness Network - Emotional Well-Being July 28 COST: FREE PROGRAM[ ] Sleep & MS: When to Doze Teleconference August 8 COST: FREE PROGRAM[ ] New Connections, Edwardsville August 11 COST: FREE PROGRAM[ ] Research MS, Jefferson City, MO August 20 COST: FREE PROGRAM[ ] Research MS, Rend Lake, IL August 20 COST: FREE PROGRA,[ ] Wellness Network - Keep Your Memory Sharp August 23 COST: FREE PROGRAM[ ] Research MS, Cape Girardeau, MO August 27 COST: FREE PROGRAM[ ] Research MS, Fairview Heights, IL August 27 COST: FREE PROGRAM[ ] Symptom Management: Optic Neuritis September 12 COST: FREE PROGRAM[ ] Wellness Network - Strength Training & MS September 15 COST: FREE PROGRAM[ ] John L. Trotter Research Program, St. Louis, MO September 22 COST: $15[ ] Family Weekend, Touch of Nature, Makanda, IL October 14-16 COST: $70/PERSON BEFORE OCT. 5 $85/PERSON AFTER OCT. 6

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Permit No. 3914St. Louis, MO

Gateway Area Chapter1867 Lackland Hill ParkwaySt. Louis, MO 63146

Gateway Area Chapter1867 Lackland Hill ParkwaySt. Louis, MO 63146


happeningsmaking the most of life and the least of MS

In this issueProgressive MS Symposium . . . . . . . 17Relationship Matters . . . . . . . . . . . . . 17Creative Art Therapy . . . . . . . . . . . . . 18Deliver a Smile . . . . . . . . . . . . . . . . . . 19New Connections . . . . . . . . . . . . . . . 19Camp Hope . . . . . . . . . . . . . . . . . . . . . 20Research MS . . . . . . . . . . . . . . . . . . . . 20Acorda Therapeutics Programming . 21John L . Trotter Research Program . . . 22Family Weekend Touch of Nature . . . 23Talk MS Groups . . . . . . . . . . . . . . 24-25Therapeutic Recreation . . . . . . . . 26-27Beat the Heat . . . . . . . . . . . . . . . . . . . 28Wellness Network . . . . . . . . . . . . . . . 29Midwest Teleconference Series . . . . 29Chapter Calendar . . . . . . . . . . . . . . . . 30 Registration Page . . . . . . . . . . . . . . . . 31

Your Source for Knowledge, Wellness, and Support Summer 2011

Summer has arrived and so has the warm weather. Get some tips on how to beat it (pg. 28).

It is also time for summer vacation. Check out the Chapter’s newest program, Camp Hope (pg. 20) — a summer camp for youngsters affected by MS.

Learn about the latest in MS research from experts in the field at a Research MS program (pg. 20) or the annual John L. Trotter Research program (pg. 22).

If you’re looking for a unique way to express yourself, join us at a Creative Art Therapy session (pg. 18).

You’ll also want to mark your calendar for the always popular Family Weekend at Touch of Nature (pg. 23).

Go to gatewayMSsociety.org gPrograms & Services g Program Calendar for the latest updates.

MS Connection - Summer Edition 2011

Documents

Transcript of MS Connection - Summer Edition 2011