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SUMMER 2013 GATEWAY AREA CHAPTER

MS CONNECTION MAGAZINE Don’t just ride Team Kaldi’s hits Million Dollar Mark

INSIDE 4-5 THIS ISSUE

MAKING A RUN FOR IT

8-9

16-17 27-29

FIREFIGHTER STEPS UP FOR COLLEAGUE

CHAPTER PRESIDENT MOVING ON

MAKING THE MOST OF TALK MS GROUPS


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MS CONNECTION: SUMMER 2013

INSIDE THIS ISSUE Be A Digital MS Activist.................. 3 Making A Run For It.................... 4-5 Kaldi’s Hits Million Dollar Mark... 6-7 Firefigher Steps Up For Colleague... 8-9 Balanced Care Workshop................. 9 John L. Trotter Program.................. 9 Ask The Professional.......................10 Camp Hope....................................11 CarePartner Column.......................12 Connections....................................13 Research On The Road...................13 Research MS..............................14-15 Chapter President Moving On...16-17 Update on Therapies.......................17 Financial Assistance........................18 Wellness Network...........................18 Tips To Beat The Heat....................19 Volunteer Column......................... 20 Chapter News................................ 22 Alternative Treatments................... 23 Family Weekend............................ 24 Talk MS Groups........................27-29

LETTER FROM THE PRESIDENT Dear Friends, It is with mixed emotions that I write this column. The Gateway Area Chapter has been my home for the last 20 years, and this month I will be moving on to a new position with the National MS Society’s West Region. I can’t tell you what an honor it has been for me to work with the board members, staff, volunteers, and everyone connected to the MS movement in Missouri and Illinois. I thank you all for your commitment to a world free of MS, and for allowing me to play a part in it here. When I look through the pages of this magazine, I can’t help but reflect on the progress we’ve made since I first became a part of this movement. Twenty years ago, we did not have a single diseasemodifying drug. On page 10, Dr. Myles Goble reflects on the challenge of choosing among the 10 FDA approved treatments. We highlight one of our Bike MS teams, Team Kaldi’s Coffee, on page 6, for reaching the milestone of $1 million raised. The growth in the Bike MS: Express Scripts Gateway Getaway Ride, along with Walk MS, the Dean Team Automotive Challenge Walk MS, MuckFest MS, MS Corporate Achievers and DIY events (see page 8) over the last two decades have been tremendous, and it is due in large part to dedicated teams like Kaldi’s. We highlight Kim Williams on page 27, one of our Talk MS group facilitators. Committed volunteers like Kim providing support to other people living with MS in our community show the power of all the connections we have built at the Chapter.

Chapter Calendar........................... 34

I am grateful for all the wonderful people I have had the opportunity to work alongside, and I know that I will miss you all as I move into my new role. Thank you for everything!

Program Registration......................35

Sincerely,

Therapeutic Recreation.............. 30-32

Midwest Teleconference Series....... 36

P.S. Although I will be working in the West Region of the National MS Society, my home will still be here in Missouri!


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ADVOCACY

BE A DIGITAL MS ACTIVIST In 2012, MS activists sent tens of thousands of emails, placed hundreds of phone calls, and made hundreds of in-person visits to members of Congress asking for their support on issues important to people with multiple sclerosis and their families. And now there are more ways for MS activists to connect—online.

DRIVING CHANGE Digital MS activists—like all MS activists— want to drive change and do so by amplifying their voice and connecting with elected officials over social media. At www.nationalMSsociety.org/digiMSactivist, learn how to share your story, connect with other MS activists and build relationships through social media and email. The webpage includes ways to: • Get informed. Become part of the MS Activist Network. Receive e-newsletters and Action Alerts about important pieces of legislation. Send emails with a few clicks of your mouse. • Rise up. Learn where your elected officials stand. Speak out on issues important to you as a person affected by MS. • Take Action. Build relationships with elected officials by posting on and liking

their social media pages and by thanking them on Facebook or Twitter for their supportive actions. • Recruit. Encourage others to join the movement by directing them to our video at ntl.ms/YouCanBeAnMSActivist, or to www.nationalMSsociety.org/ digiMSactivist. Become a digital MS activist and help shape the conversations today that will drive change tomorrow—we promise you, people will listen!

DEAR COLLEAGUE “Dear Colleagues” are important tools in supporting legislation that impacts people with multiple sclerosis. They are letters sent by one or two members of Congress to fellow members, usually asking for co-sponsors on a new bill or seeking to influence recipients’ votes on a particular issue. The Society often helps compose letters that support legislation important to people with MS. MS Activists help gain signers through Action Alert emails. This spring, Dear Colleagues were circulated in Congress to support $10 million in funding for the MS Congressionally Directed Medical Research Program, $32 billion for the National Institutes of Health, and $2.5 million for the Lifespan Respite Program. The Congressional MS Caucus and MS activists are working in coalition with other groups to preserve these funding levels for FY 2014. To join the effort, go to www.nationalMSsociety.org/MSActivist.


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LIVING WITH MS

MAKING A RUN FOR IT Like most people, Bill Sinak wasn’t sure what the future held when he was told “you have MS.”

“I didn’t know if I would be able to do much in 5 or 10 years,” said Bill, who was diagnosed when he was 29. His wife had just had a baby girl. “I wasn’t really sure what my life was going to be like. Would I be able to do things with my kids?” As an athlete, Bill already lived an active lifestyle. After being diagnosed he got even more active. He has ridden in Bike MS every year for the past 19 years and began running marathons in 2000. “My neurologist said from the start to stay healthy and to stay active,” Bill said. This June, Bill went the extra mile – in fact he went an extra 200 miles. As part of the 3,000 mile relay run across America called MS Run the US Relay, Bill ran from Steamboat Springs to Hudson, Colorado in 9 days in early June. “This run was truly a life-changing journey for me,” Bill said. “Participating in MS Run the US was an opportunity for me to take it to an entirely new level of both awareness and fundraising.” Bill read about Ashley Kumlien’s run across the United States a couple of years ago and when he heard that she was organizing a relay run across America, he knew he had to be a part of it. “I thought it was right up my alley,” Bill said.

BILL SINAK RAN 200 MILES IN 9 DAYS IN COLORADO AS PART OF THE MS RUN THE US RELAY ACROSS THE UNITED STATES. CLICK HERE TO SEE MORE.

“I like to run, but this is way longer than I had ever run. I felt surprisingly strong almost the entire run. The cool crisp mountain air was like breathing new life on a daily basis. I was humbled by how amazing it was to be out in the middle of nowhere, all by myself, just running mile after mile across our beautiful country.”

Bill, who has run 18 marathons, is determined to not let his MS slow him down and part of the reason he’s doing the run is simply because he still can. “I want to do whatever I can to stay healthy,”


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Bill said. “Part of it is that I didn’t know how long I’d be able to do these things. I’ve been lucky with my MS so I’ve been able to stay a step ahead of it with my medications, activity level, and my mental attitude.” The three goals of the MS Run The US Relay are to raise awareness, raise funds and inspire other people living with MS to keep moving. Bill has raised close to $30,000 riding in Bike MS over the years for team Copaxone and he has already raised more than $13,000 for his run – mainly online. “I have a great support network of people who have been donating to my bike ride for years,” Bill said. “I sent out a mass email to everyone who has supported me, and Facebook and Twitter have been huge. I’ve probably gotten the majority of donations from Facebook and all over the world on Twitter.” Only two of the 14 relay runners live with MS, making Bill even more of an inspiration. “I’ve been humbled by all the support from people,” Bill said. “Knowing I’m one of the two people out there doing this with MS, it’s a little more personal to me.” Several members of Bill’s family made the trip to Colorado to cheer him on. “My family met me several times along the route to cheer me on, which was extremely motivating and emotional,” Bill said. “My favorite day and moments came on day 5 when I climbed 8.5 miles up and over Loveland Pass to reach 12,000 feet. Getting to the top and seeing my family was majestic. My wife has been my rock for all the years of fundraising and training. She’s been involved in the MS Society as much as I have with

SINCE HE WAS DIAGNOSED WITH MS 20 YEARS AGO, BILL SINAK HAS BEEN DETERMINED TO KEEP MOVING THROUGH BIKE MS AND MARATHONS. volunteering.” After 9 days, 200 miles of running and more than $13,000 raised, crossing the finish line was bittersweet. “When I finally reached the finish, it was somewhat surreal and I had mixed emotions,” Bill said. “It was great to accomplish what I set out to, but it was a bit sad having it come to an end. All in all, I could not have asked for a better 9 days of running. It was simply amazing.” The MS Run the US Relay will end in New York City on September 6. Bill was invited to run the final leg of the relay, but can’t because it’s the same weekend as Bike MS and he’ll be celebrating his 20th year participating in the ride. Whether he’s moving on the bike or on foot, Bill’s message about MS is clear. “MS isn’t a life-ending diagnosis,” he said. “There’s life after MS.” n


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BIKE MS

$1 MILLION RAISED - THAT’S A LOT OF COFFEE BEANS When Sandi Phillips asked Kaldi’s Coffee to sponsor her Bike MS team in 2003, she had no idea what she was getting into. “I think when we started this, none of us really knew how far it was going to go and how many years they were going to sponsor us,” Sandi said.

TEAM KALDI’S COFFEE WILL HIT THE $1 MILLION RAISED MARK THIS YEAR AT BIKE MS.

A decade later, Kaldi’s still sponsors the team. However, this latest anniversary is not their biggest milestone. They are on their way to hitting the one million dollars raised mark in total team fundraising this year. “Last year, we raised just shy of $150,000. Along those lines, we see we’re going to be able to hit one million during the August timeframe,” team captain Don Baird said. “It’s so exciting to be able to reach such a great milestone for the MS Society,” Sandi said. “I think it’s such a tribute to Kaldi’s and everything they do for the community.” Josh Ferguson, Kaldi’s owner, says Team Kaldi’s has a special element that led to this accomplishment. “I think it’s the people. It’s really as simple as that,” Josh said. “ It’s really all about great

people getting together and raising money for a great cause.” Team Kaldi’s now has nearly 150 teammates. Don said his team is full of outstanding members who are already in full swing for 2013 fundraising.

TEAM KALDI’S COFFEE YEAR BY YEAR

YEAR 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 TOTAL

$ RAISED CYCLISTS $11,311 14 $12,992 16 $25,965.00 52 $46,406.00 64 $60,159.00 67 $77,910.00 75 $86,421.00 93 $103,092.00 116 $106,403.00 122 $123,482.00 166 $140,175.00 142 $148,562.00 149 $942,878.00 1076


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TEAM KALDI’S COFFEE HAS BEEN A FIXTURE AT THE TOP TEAMS START AT BIKE MS FOR YEARS.

“I THINK IT’S THE PEOPLE. IT’S REALLY AS SIMPLE AS THAT. IT’S REALLY ALL ABOUT GREAT PEOPLE GETTING TOGETHER AND RAISING MONEY FOR A GREAT CAUSE.” “We’ve asked our top fundraisers to help teach their methods to raise money to fight MS,” Don said. “I think that’s really going to help us this year.” Teammate Mark Abels has been riding with Team Kaldi’s since its start. He thinks there’s more to that special element that Josh was talking about – Kaldi’s. “They’re a tremendous sponsor,” Mark said. “They’re always happy to work with us.” What’s next for Team Kaldi’s? No one is sure. “I don’t know,” Sandi said. “2 million? 3

million? Another 10 years? It’s hard to say.” “We’re not here to win any races or set any land speed records,” Mark said. “We’re out here, we’re moving, we’re going, we’re enjoying our bike riding and it’s really appropriate that we’re able to do that to fight MS because MS keeps people from moving. It slows people down and we’re going to speed people up again.” n


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DO IT YOURSELF EVENTS

24 HOURS OF WALKING ADDS UP TO $27,000 RAISED When Doug Raines heard that fellow firefighter Nick Leone had been diagnosed with MS at just 29 years of age, he knew he had to do something.

Doug organized a 24-hour treadmill walk at the fire station to raise money and awareness. Doug recruited 24 teams to donate at least $400 a team. The team donations combined with raffle items and donations from the community added up to $27,000. “The majority of the donations came from word of mouth through Nick’s family and friends, along with the fire department community,” Doug said. “We were also very fortunate to have several nice raffle items. including St. Louis Cardinals jerseys, Blues tickets, Rams tickets and free golf.” Doug had lofty goals for his 24-hour walk as he hoped to raise $20,000. He knew that he had a community behind him that would support him and Nick. “I was surprised to reach $27,000,” he said. “I was not surprised that I reached my goal of $20,000. I knew that the community and the people that care for Nick and support our fire

WHEN FIREFIGHTER NICK LEONE WAS DIAGNOSED WITH MS, FELLOW FIREFIGHTER DOUG RAINES INITIATED A 24-HOUR WALK-A-THON TO RAISE FUNDS AND AWARENESS FOR MS. HE EXCEEDED HIS GOAL OF $20,000 BY $7,000. department would come through. We live in a great community!” For his tremendous fundraising achievements, Doug was invited to the National MS Society’s national conference in Dallas which opened his eyes to the community surrounding MS. “As a fireman I belong to a brotherhood - a tight group of individuals that would go to great lengths for each other,” Doug said. “I have never seen or been a part of something that has ever come close to the friendships and commitments that we have as firemen, until I


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I HAVE NEVER SEEN OR BEEN A PART OF SOMETHING THAT HAS EVER COME CLOSE TO THE FRIENDSHIPS AND COMMITMENTS THAT WE HAVE AS FIREMEN, UNTIL I WENT TO THE NATIONAL MS SOCIETY CONFERENCE IN DALLAS. went to Dallas. I was so moved to be a part of the National MS Society. I was so moved by the people who were making commitments, so moved by the stories and struggles, but also so energized by the passion that the whole room had.” Doug didn’t know much about MS until Nick was diagnosed in 2012, but he learned all about the progress of MS research and the support available at the national conference. “It was a great thing for me to see beyond what I did in September and outside my little world,” Doug said. “My little world consisted of Nick at 29 being stricken with this terrible disease and once I got to meet other people in the organization and other people with MS, I was overwhelmed. I wish I could have bottled that experience and brought it back with me. So many people helped me through that fundraising experience and they didn’t realize how it touched so many people. I wish that type of atmosphere could be around all organizations.” n

LIVING WITH MS

FREE WORKSHOP BALANCED CARE FOR INDIVIDUALS WITH MS

If you have MS or are a family member or caregiver of someone with MS, you should attend this free workshop. It is brought to you by the Veterans Affairs MS Centers of Excellence and the VA St. Louis Health Care System.

AUGUST 3, ST. LOUIS, MO, 9:30 A.M. Saint Louis University 3050 Olive St., Monastero-Sanctuary Room St. Louis, MO 63103

Please note this is NOT a program run by the Gateway Area Chapter of the National MS Society. For more information please contact Dr. Marsha Tarver at 206-764-2433 or marsha.tarver@va.gov.

SAVE THE DATE JOHN L. TROTTER PROGRAM SATURDAY, NOVEMBER 16, 10 A.M. TOPIC: Vitamin D and MS SPEAKER: Dr. Ellen Mowry Assistant Professor, Neuroimmunology Johns Hopkins University


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ASK THE PROFESSIONAL

HOW DOES MY NEUROLOGIST CHOOSE THE APPROPRIATE THERAPY FOR ME? Now that Aubagio and Tecfidera have been approved to treat relapsing forms of multiple sclerosis, there are now three oral medications available (Gilenya is the other, approved for use in the US in September 2010). All three oral medications have the potential to cause elevations in liver function tests, but Tecfidera is the only one that does not have any contraindications (or conditions where that therapy should be avoided). Gilenya is thought to work by affecting the movement of potentially auto reactive lymphocytes into the central nervous system while Aubagio is thought to work by inhibiting the formation of certain cells, including potentially harmful T-cells. Tecfidera is thought to affect the oxidative stress pathways of cells, decreasing inflammation. The decision regarding which disease modifying therapy (DMT) to use is a sometimes complicated one that, in my practice, involves looking at the issue from several different angles. First, tolerability — which therapy will my patient best tolerate? If a patient cannot stand to take his/her medicine due to intolerable side effects, then no matter how good a therapy is, it won’t work optimally.

Safety is another issue that is important to consider when choosing a treatment. Each therapy has its own set of possible side effects and one should always weigh the possible benefits of a DMT against the possible consequences of using it. It is fair to say that although the thought of taking a pill MYLES GOBLE, MD once or twice a day sounds NEUROLOGIST much more appealing than NEUROLOGY, INC. getting shots or getting an COLUMBIA, MO infusion, we have so much more data regarding safety of the older medicines in treatment of MS than we do on the newer ones. Another issue is efficacy, or how well a therapy has been shown to work in studies. Unfortunately, there aren’t any studies that directly compare ALL of the different options, but there are some studies that compare one DMT to another DMT. In the end, I tend to let the patient decide which therapy he/she would like to be on since, in my opinion, “owning” that decision seems to have a major influence on whether or not there will be success with that particular therapy. n


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LIVING WITH MS

CAMP HOPE JULY 21-26, MAKANDA, IL

This program is just for youth ages 8-15 who have a loved one with MS or live with 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. Activities include: • Swimming, canoeing, and pontoon boat rides • Adventure hikes and fishing • Campfires and evening entertainment • Arts and crafts and other creative activities • Horseback riding • MS education and sharing groups

DETAILS:

July 21-26, Makanda, IL Touch of Nature Environmental Center Southern Illinois University (near Carbondale)

PROGRAM FEE:

$150 per child. The fee includes all meals, overnight lodging, and activities. Scholarships are available. Contact Stacey at stacey.sickler@ nmss.org or 314-781-9020.

REGISTRATION:

Each camper must complete an application online 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 21.

NEEDED: MALE CAMP HOPE COUNSELORS TOP REASONS TO BE A CAMP HOPE MS COUNSELOR:

• Make a difference in the lives of kids affected by MS • Network with other counselors • Gain terrific experience educating children • Build your resume • Rack up service hours • Have fun in a great setting

DO YOU KNOW A YOUNG MALE WHO WOULD MAKE A GREAT COUNSELOR? The Chapter is in great need of male counselors over the age of 18 for Camp Hope. If you know a good candidate please contact Stacey at 314-781-9020, then press 0 or stacey.sickler@nmss.org. DEADLINE TO APPLY IS JUNE 21.


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TIPS FOR CAREPARTNERS

IS IT THEM OR THE MULTIPLE SCLEROSIS? My husband has become short tempered and irritable since his MS diagnosis 2 years ago. Although he may have been moody before, now the moods seem more intense and last longer. Is it him or the MS? Sarah, MS Carepartner Dear Sarah, I can honestly say that this is one of the most frequently asked questions in the MS Carepartner group I facilitate. “Is it them or the MS?” First, it’s always important for you to tell your husband’s doctor about any changes in your husband including his moods. This is the best place to determine if there is a physical issue evident from your husband’s moodiness either related to his MS, another ailment or a side effects to medications. Understandably, both physical and cognitive impairments in MS can create irritability. In asking the question, it seems you are searching for a way to cope with his moods. If the answer is “It’s the MS,” then this leads a carepartner to want to increase their patience and tolerance with the situation. If the answer is “It’s him,” then a carepartner feels justified in asking their partner to change. After all, it wouldn’t be fair to expect change if they can’t change. Unfortunately, our moods and our bodies are intensely aligned, so drawing a line and saying “This mood is because of the MS and this one is not,” is typically not possible. But, perhaps the solution to coping with your husband’s moods is in the questions behind

your question. When other carepartners have asked this, I have discovered what they are really asking is: • Are they irritable because of something I’ve done?

KAREN TRIPP, MS LMFT MARRIAGE AND FAMILY THERAPIST

• Is there something I need to do so they will not be so irritable?

• Is it always going to be like this? • Do they still love me? These questions exists in every healthy relationship at one time or another. What is important is for the MS to not get in the way of them being asked. By asking them, you can remove the negative impact of false assumptions and restore open communication which can lead to resolution. Remember, open communication is not a one-time fix but rather the way healthy couples work toward conflict resolution and intimacy. n


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LIVING WITH MS

RESEARCH MS

LEARN. NETWORK. GROW. Connections is a program that enables people

Research MS is a program that provides updates on current multiple sclerosis research and allows professionals to discuss any new therapies available to people living with MS.

CONNECTIONS

living with MS to meet others who deal with similar situations. Participants also hear from an expert on the disease. They can listen and ask questions to gain an insight on Aubagio, as well as progress in research to help find a cure for MS.

JULY 9, JEFFERSON CITY, MO, 5:30 P.M. Capitol Plaza Hotel 415 W. McCarty St. Jefferson City, MO 65101

Guest Speaker: Myles Goble MD Neurologist Neurology Inc. Columbia, MO

SEPT. 12, MARION, IL, 5:30 P.M. 17th Street BBQ 2700 17th St Marion, Illinois 62959

REGISTRATION REQUIRED: These programs are free but call 800-3444867 or go to gatewaymssociety.org g Chapter Calendar to register.

ON THE ROAD

JUNE 15, COLUMBIA, MO, 10 A.M. Hilton Garden Inn 3300 Vandiver Dr. Columbia, MO

Guest Speaker: Erin Longbrake, MD, PHD

MS Neurology Resident Washington University School of Medicine

AUGUST 24, REND LAKE, IL, 10 A.M. Gibby’s on the Green 12476 Golf Course Dr. Wittington, IL

Guest Speaker Mark Tullman, MD

The MS Center for Innovations in Care Missouri Baptist Medical Center

SEPT. 21, CAPE GIRARDEAU, MO, 10 A.M. St. Francis Health and Wellness Center 150 S. Auburn Rd. Cape Girardeau, MO

Guest Speaker: Gregory F. Wu, MD, PHD

Division of Multiple Sclerosis Department of Neurology Washington University School of Medicine

SEPT. 24, MARYVILLE, IL, 6 P.M. Anderson Hospital 6800 State Route 162 Maryville, IL

Guest Speaker: Florian Thomas, MD, PHD

Director, St. Louis VA Regional MS Center of Excellence Director, National MS Society Multiple Sclerosis Center Professor of Neurology Saint Louis University

REGISTRATION REQUIRED: SPONSORED BY:

These programs are free but call 800-3444867 or go to gatewaymssociety.org g Chapter Calendar to register.


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RESEARCH

PROGRESS AT AAN MEETING Over 12,000 neurologists and other researchers gathered in San Diego in March to share the most up-to-date research on treating neurological diseases such as multiple sclerosis at the annual American Academy of Neurology’s (AAN) meeting. Here are a few highlights from the more than 500 MS-related presentations that focused on stopping MS, restoring function and ending MS forever.

STOPPING MS STOPPING THE DISEASE

RESTORING WHAT’S BEEN LOST

Progressive MS

ENDING MS FOREVER

A small study of an oral blood-pressure medicine, Amiloride, found a reduction of brain shrinkage associated with the disease in 14 people with primary-progressive MS. Further testing in a larger study is now underway. Researchers in a large trial of Gilenya for primary-progressive MS reported good progress in setting up the trial. This is one of several ongoing large studies in progressive MS.

PROFESSOR EBERS, CENTER, RECEIVES THE JOHN DYSTEL PRIZE FROM DRS. TIMOTHY COETZEE AND BRUCE COHEN weeks was effective in reducing relapse rates and the risk of progression of disability. The study is continuing into a second year and the trial sponsor Biogen Idec has announced plans to apply for FDA approval later this year. Another one-year phase III trial found that injections of twice the standard dose of glatiramer acetate (Copaxone) taken three times per week were effective in reducing relapses and MRI-detected disease activity, with no unexpected safety issues.

MS Therapies

A large study in France (ENIGM) found that among 200 people who switched from natalizumab (Tysabri) to fingolimod (Gilenya), 32% experienced a relapse during the “washout” interval of 3 to 6 months when no therapy was given. The researchers concluded that switching increases the likelihood of disease reactivation and that the washout period should not be longer than 3 months.

Results of a study on peginterferon beta-1a (a new form of Avonex) designed to stay in the body longer than the standard form suggest that peginterferon injected every two or four

Results of two phase III trials of oral dimethyl fumarate (Tecfidera), approved by the FDA in March, suggest that the treatment begins to take full effect after three months’ use. This


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effect was sustained over the two-year span of the trials. Several presentations focused on results from extension phases of completed clinical trials in relapsing-remitting MS. To read more, visit www.nationalMSsociety.org/2013AAN.

STOPPING THE DISEASE

on disease disability and progression in future trials.

RESTORING FUNCTION

Exploring disease activity An Argentinian study on whether vaccinations can trigger MS attacks found that yellow fever vaccines may substantially increase the risk of MS relapse; therefore, people with MS planning a trip to a region with an increased risk of yellow fever should discuss the risks and benefits of vaccination with their doctor. A small study in Louisiana found that people with higher levels of glucose were more likely to have higher levels of disability. This important lead needs more study to prove a role for blood sugar in MS progression. A few studies focused on ways to track disease progression, including one that analyzed serum samples from people with MS who were taking glatiramer acetate (Copaxone). The researchers were able to find antibody profiles that could detect those who responded to therapy and those who did not. Dr. Nicholas LaRocca of the National MS Society described efforts of the newly formed MS Outcome Assessments Consortium to accelerate development of more effective treatments for MS. They will analyze data from completed MS clinical trials and other studies and work with regulatory agencies to qualify a new outcome measure that can more sensitively track the impact of therapies STOPPING THE DISEASE

Several studies focused on the benefits of exercise for brain function and MS symptoms such as fatigue, while others looked at how the brain can adapt to MS damage. To read blog posts by MS researchers on these and other studies, visit blog.nationalMSsociety.org.

RESTORING WHAT’S BEEN LOST

RESTORING WHAT’S BEEN LOST

ENDING MS FOREVER

A study on CCSVI did not find a significant difference between 61 people with MS and 20 people without MS when technicians trained in CCSVI assessment used various ultrasound techniques to detect the condition. The first results of another study of controlled endovascular treatment at six months found no adverse events, but also no sustained improvement in venous outflow.

ENDING THE DISEASE FOREVER Several reports focused on risk factors for MS, including one indicating that dietary salt may stimulate activity of key immune cells involved in MS attacks. Read more at www. nationalMSsociety.org/dietarysalt. ENDING MS FOREVER

For his extensive work on understanding MS, including the importance of genetic factors in who develops the disease and how genes interact with environmental factors, Professor George Ebers was this year’s recipient of the John Dystel Prize for MS Research, given jointly by the Society and the AAN. Read scientific summaries on the AAN’s website at www.abstracts2view.com/aan. n


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BOARD OF TRUSTEES

AFTER 2 DECADES, CHAPTER PRESIDENT HEADED WEST Gateway Area Chapter President Phyllis Robsham lost track of the number of Walks she has participated in, but she’s sure the number is in the hundreds.

When you add in educational and social programs, Bike MS, Challenge Walk MS, Talk MS group meetings, and all of the other events the Chapter holds, the number is easily more than a thousand. But what she says she will remember most about her time at the Chapter is not the many events – it is the people. “Over the past 20 years, I’ve had the opportunity to spend time with some of the most dedicated and passionate people I could ever hope to meet here at the Gateway Area Chapter,” she said. “From our Chapter staff members, to our committed volunteers, to the thousands of people living with MS and their families in our community, it has been a joy and a privilege to work alongside such amazing people.”

PHYLLIS ROBSHAM ADDRESSES THE CROWD AT CLOSING CEREMONIES OF THE DEAN TEAM AUTOMOTIVE CHALLENGE WALK MS AT WASHINGTON UNIVERSITY ON JUNE 2. SHE BEGAN HER CAREER WITH THE NATIONAL MS SOCIETY IN 1993 AND HAS DONE ABOUT EVERY JOB AT THE CHAPTER. BELOW SHE ENJOYS A CHAPTER FUNDRAISER IN 1997. Robsham’s next step in the MS Movement will take her to some of the farthest corners of the National MS Society, including Alaska and Hawaii. Robsham will move into the role of Executive Vice President of the West Region of the National MS Society starting in June, 2013. While her travels will take her across much of the country, Robsham’s home will remain in St. Louis.


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In her new role, Robsham will be providing leadership to nine Chapters in 12 states. But what she looks forward to the most, she says, is not visiting the beautiful beaches of California or the Rocky Mountains.

RESEARCH

“I look forward to sharing many of the lessons that I have learned in my time at the Gateway Area Chapter, as well as continuing to learn from the great people working across the West Region and the country,” she said. “Together, we will keep moving toward a cure!”

Here are potential therapies to keep an eye on as we move forward.

Robsham served in almost every department at the Gateway Area Chapter, starting as a Director of Special Events in 1993, and moving on to become Director of Development, Vice President of Chapter Development and Programs, Executive Vice President, and eventually Chapter President in 2008. Gateway Area Chapter Board of Trustees Chair Bob Cannon summed up Robsham’s contributions nicely. “Phyllis has led the Gateway Area Chapter with great distinction, and it has been a privilege to work with her. She lives her values and gives of herself every day to serve the MS community. While a skilled executive at running a complex organization, Phyllis also possesses that rare quality of connecting personally with her staff and the public. She is a role model in so many ways, and we will miss her. She will serve an even larger MS community in her new role, and for that, we are all grateful.” n

PROGRESS ON MS THERAPIES

Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later. Laquinimod is a once-daily oral immune modulator that showed in phase III studies to decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS. A highly concentrated liquid formulation of daclizumab is under study in relapsingremitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsing-remitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsingremitting MS, is needed to further determine ocrelizumab’s safety and benefits. Research is also underway on potential treatments for progressive forms of MS and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments. Current clinical trials include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab. n


18 FINANCIAL ASSISTANCE RESOURCES & TIPS YOU COULD USE. ELECTRIC BILLS To apply for summer low income home energy assistance programs, contact United Way 2-1-1 or your local community action agency. The Gateway Area Chapter of the National MS Society may be able to provide assistance with electric bills; certain restrictions apply. Learn about how to apply for this assistance by accessing the Financial Assistance page on our website at www.gatewaymssociety.org or by calling our office at 314-781-9020. COOLING PRODUCTS The Multiple Sclerosis Association of America (MSAA) offers low-income families free cooling products when provided with a completed application and a doctor’s script; contact them at 800532-7667 or visit their website at www. mymsaa.org. COOLING CENTERS United Way 2-1-1 maintains a list of cooling sites (over 90 sites in MO & IL) offering the general public air-conditioned relief and cool water during the hottest part of the day. Sites are activated if an Excessive Heat Advisory or Warning is issued by the National Weather Service. Dial 2-1-1 for more information and for the location of the center nearest you.

MS CONNECTION: SUMMER 2013

LIVING WITH MS

WELLNESS NETWORK

The Wellness Network connects people who have an interest in or who are actively participating in exercise programs through a monthly teleconference. These monthly calls are an opportunity to share ideas and encouragement about exercise and include special guest speakers.

JUNE 27, 7-8 P.M. AT-HOME EXERCISES

Discuss different exercise options for you to do at home and learn more about the Chapter’s at-home exercise program.

JULY 25, 7-8 P.M. ZUMBA!

Learn what Zumba is, its benefits, how it can be modified for people living with MS and where it’s offered.

AUG. 22, 7-8 P.M. PILATES & MS

Learn about what Pilates is, its benefits and how it can help with symptom managment.

SEPT. 26, 7-8 P.M. ALTERNATIVE MASSAGE THERAPY

Hear about the benefits of alternative massage therapy for people living with MS including Reiki Massage and Thai Medical Massage.

The Wellness Network is free and provides resources to a wide variety of people with MS of all abilities. 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.


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GATEWAYMSSOCIETY.ORG | 1-800-344-4867

LIVING WITH MS

TIPS TO BEAT THE HEAT & STAY COOL The 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. Overheating can cause a temporary aggravation of MS symptoms that have occurred before. Taking measures to cool the body to a normal temperature will relieve these symptoms. 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: 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.

Many companies have designed cooling garments & other types of equipment to help you stay cool, including vests, wristbands, neck/ ankle wraps, hats/caps and shirts. To select the appropriate cooling equipment for your individual needs, we encourage you to consider: • What is the total cooling time of the garment? • What is the cooling garment made of? What is the garment’s weight? • As the garments utilize different types of cooling mechanisms (e.g., ice packs, evaporative cooling, phase-change), which would work best in your climate? • Is the garment designed to fit under or over regular clothing? • Will you need to purchase extra cool packs to maximize the use of the garment? • Will your health insurer cover this item? (If needed, the insurance billing code for cooling products is “E-1399: Durable Medical Equipment – Miscellaneous”). If your health insurer denies your request, contact us for a cooling equipment appeal letter. RESOURCES

WEBSITE

PHONE

MS Association (MSAA) Cooler

mymssa.org/msaa-help/ cooling/

800-532-7667

MS Cooling Program

msfocus.org/CoolingProgram.aspx

888-673-6287

Body Cooler

bodycooler.com

800-209-2665

Cool Medics

coolmedics.com

800-505-0050

Cool Sport, Inc.

coolsport.net/index.html

310-618-1590

Glacier Tek, Inc.

coolvest.com/MSdiscount 800-482-0533

Misty Mate

mistymate.com

800-233-6478

Polar-Products (CA) polar-products.com

800-597-0618

Polar-Products (OH) polarproducts.com

800-763-8423

Steele, Inc.

888-783-3538

steelevest.com


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MS CONNECTION: SUMMER 2013

VOLUNTEER COLUMN

VOLUNTEERING CAN LIFT THE SOUL BY HENRY VANSTON HEIGHTS BUDDY VOLUNTEER

I was asked to explain why I volunteer. The short answer is my faith and the concept of loving your neighbor as yourself. That sounds like an obligation, possibly similar to paying taxes ... not much fun, but you have to do it, and it costs. However, I know for myself that giving to others more often results in blessings greater than the cost. Sometimes I seem to forget that part on occasion. There have been several times when I have gone to The Heights more from an obligation than a genuine desire to care for others. The rest of life was too busy, I need some time for myself, I’m not in the mood, I don’t have time, the time is not convenient, and on and on. But I can tell you that I have never invested time that I was sorry to have spent. When I arrive, I am greeted by big smiles on the faces of people genuinely glad to see me. My soul can feel the lift! Occasionally, I fall into a mode of self-focused complaining about life circumstances, and can only see what is wrong. I am amazed at the smiles and attitudes of people with active minds, but trapped in bodies that can’t keep up. To engage with people in circumstances much worse than mine has made me much more appreciative of what I have. I am more aware of my real desire to value the moments,

circumstances and people in my life as it happens.

When I first started volunteer work for the National MS Society, I was often asked if the reason I was there was because a friend or relative had MS. At the time, the answer was no. But now I continue, in part, because I have 20 friends with MS.

HENRY VANSTON HEIGHTS BUDDY VOLUNTEER

MARKETPLACE ADS ACCESSIBLE HOME FOR SALE IN EUREKA, MO Home is listed for $340,000. See pictures and information at realtor.com. 2 Meramec Bluffs Ct, Eureka, Mo. Contact Melanie Cooper at RealtyExecutivesPremiere at: 314-393-2872 or 636777-2872. Email: melanie@melaniecooperteam.com POWER CHAIRS Jazzy 614 heavy duty power chair. Includes charger. About 3 years old. Not many hours. Asking $2,000. In good condition. Contact Vern Anderson at 636-3940199. Quantum 1113 power chair. Battery is still good, includes joystick. 5 years old. In good condition. Asking $500, but negotiable. Contact Linda Jenkins at 314-7741894.


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

You’re

invited!

Know Your Options: Exploring an FDA-approved treatment for MS relapses

If you’re looking to learn about different options for treating your MS relapses, you plus one caregiver or friend are invited to this FREE educational session where MS healthcare professionals will discuss:

Ý The difference between MS relapses and pseudo-relapses Ý The importance of treating your MS relapses Ý How to talk about your MS relapses with your healthcare provider Ý Available treatment options for MS relapses Ý Insights shared by others living with MS

Register by Monday, June 17, 2013. Call 1-877-219-0410 or visit www.msrelapseprogram.com Use Program ID # 1201. Complimentary meal and parking will be provided.

Location

BlackFinn American Grille 1147 St. Louis Galleria St. Louis, MO 63117

Date

Tuesday, June 18, 2013

Check-in

5:30 PM

Time

6:00 PM

Presented by Amy Dix, MPA-C, MSCS Jennifer Ravenscroft, PA-C, MSCS College Park Family Care Center Overland Park, KS

Remember: You and a guest are welcome at this FREE educational session. All MS relapse therapy decisions should be made under the guidance of your healthcare professional. ©2012 ©20 12 Que Questc Questcor stcor or Pha Pharma Pharmaceuticals, rmaceu ceutic ticals als, Inc IInc. nc. PM PM-54 PM-542-03 542-0 2 033 11/1 111/12 1/122

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


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MS CONNECTION: SUMMER 2013

CHAPTER NEWS

CHAPTER SPRINGS INTO ACTION WALK MS

Nearly 6,000 people who want to do something about MS raised more than $625,000 in a dozen Walk MS events across the region in April and May. Congratulations to our teams that have already raised more than $10,000 in spring walks: Crawlin’ For A Cause, Mighty Movers, Wilson’s Warriors, Team Scembo and Myelin Hunter.

OSMOND SHINES AT WOMEN ON THE MOVE

David Osmond, the son of Alan Osmond, the founder of the famed troupe of singing brothers, entertained more than 350 people at the annual Women on the Move Luncheon at the Ritz-Carlton in Clayton, MO on May 1. The luncheon raised $106,000 and honored Becky Salacki as the Novartis Woman of Courage. Becky’s husband Joe was diagnosed with MS in 2002. Last year alone she raised $30,000. But her tremendous fundraising isn’t why she is a Woman of Courage. “Somehow she finds the words to give me the strength and courage I need to pick myself up and keep going,” Joe said.

MAKING CHALLENGE WALK MS MEMORIES

The 12th annual Dean Team Automotive Challenge Walk MS enjoyed a walk on the big stage on May 31 at Busch Stadium. About 170 walkers participated in the annual 3 day, 50 mile challenge that KATIE ZAGONE HAD A VERY raises more than $500,000 every MEMORABLE CHALLENGE year. The walk on WALK MS EXPERIENCE AS the field wasn’t the HER BOYFRIEND PROPOSED only memorable TO HER AT THE CIRCLE OF moment of the weekend as STRENGTH CEREMONY. Challenge Walker Katie Zagone’s boyfriend proposed to her during Saturday night’s Circle of Strength Ceremony. She said yes. n


GATEWAYMSSOCIETY.ORG | 1-800-344-4867

23

LIVING WITH MS

SORTING THROUGH ALTERNATIVE TREATMENTS

Sorting through all the available information about multiple sclerosis, potential therapies and treatments can be confusing and intimidating. That’s why the Chapter provides monthly teleconferences. September’s teleconference speaker Patricia Kennedy, a Can Do MS Nurse Educator and Programs Coordinator, will discuss complementary and alternative treatments for MS. “I want to give people some tools they could use and make it a toolbox to help them to choose alternative treatments that might be appropriate for them,” she said. “I talk to them about how they might evaluate the claims they might hear and if they have validity or not.” Kennedy will discuss how to work your way through all the information and misinformation that is out there. “I try to help them determine if they’re trying to treat the disease of MS, for which we have no complementary treatments that are effective; or whether they are trying to treat the symptoms they deal with on a daily basis for which there are many things in the complementary world that might help to relieve what they are experiencing,” she said. Kennedy wants people living with MS to

LEARN MORE ABOUT TELECONFERENCES ON PAGE 36. FOR MORE ABOUT COMPLEMENTARY AND ALTERNATIVE MEDICINE AT NATIONALMSSOCIETY.ORG > ABOUT MS > WHAT WE KNOW ABOUT MS > TREATMENTS > COMPLEMENTARY & ALTERNATIVE MEDICINE. know that there are things they can do to help manage their MS symptoms aside from taking their regular medications. “It’s important to confirm and affirm with them that, in fact, there are things out there that don’t have to be medications that people can do to help them feel better while living with MS,” Kennedy said. “We’ll discuss vitamin D, calcium, some of the supplements that are out there that are touted, low dose naltrexone, exercise and yoga, mind and body works, meditation and all of those things that are very beneficial,” Kennedy said. “We want them to have the ability to make choices that are reasonable. Yoga is excellent for spasticity and anxiety. Meditation is another psychological treatment. Tai chi is used for things like balance. Music therapy can be effective for a number of reasons for some people. It is important to remember that these therapies are only beneficial for certain people.” n


24

MS CONNECTION: SUMMER 2013

FAMILY WEEKEND

TOUCH OF NATURE OCTOBER 18-20, MAKANDA, IL 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.

FAMILY WEEKEND AT TOUCH OF NATURE WASN’T JUST A CHANCE TO GET AWAY FOR KIM CURTIS (LEFT), IT WAS ALSO A CHANCE TO RECONNECT WITH HER FAMILY. “BEFORE THE WEEKEND, MY DAUGHTER DID NOT UNDERSTAND WHAT I WAS GOING THROUGH. AFTER MEETING OTHER PEOPLE WITH MS, HEARING THEIR STORIES, AND GAINING A NEW PERSPECTIVE ON THE DISEASE, SHE ACKNOWLEDGES THE DISEASE, BUT ALSO ACKNOWLEDGES THAT MS DOESN’T DEFINE WHO I AM.” - KIM CURTIS

WEEKEND ACTIVITIES INCLUDE: • Accessible pontoon boat rides • Accessible hayrides • Arts & Crafts for all ages • Campfire and s’mores • Accessible horseback and pony rides • Owl prowling and catch and release fishing • ‘Kids Only’ adventure activities and Halloween fun • MS education sessions and activities

LOOK FOR REGISTRATION TO OPEN IN AUGUST. A limited number of fee waivers are available for this program and/or transportation. Kids 5 and younger are free. Registration includes meals, activities and lodging.


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

You’re

invited!

Know Your Options: Exploring an FDA-approved treatment for MS relapses

If you’re looking to learn about different options for treating your MS relapses, you plus one caregiver or friend are invited to this FREE educational session where MS healthcare professionals will discuss:

Ý The difference between MS relapses and pseudo-relapses Ý The importance of treating your MS relapses Ý How to talk about your MS relapses with your healthcare provider Ý Available treatment options for MS relapses Ý Insights shared by others living with MS

Register by Monday, June 17, 2013. Call 1-877-219-0410 or visit www.msrelapseprogram.com Use Program ID # 1200. Complimentary meal and parking will be provided.

Location

Villa Farotto 17417 Chesterfield Airport Road Chesterfield, MO 63005

Date

Tuesday, June 18, 2013

Check-in

11:30 AM

Time

12:00 PM

Presented by Amy Dix, MPA-C, MSCS Jennifer Ravenscroft, PA-C, MSCS College Park Family Care Center Overland Park, KS

Remember: You and a guest are welcome at this FREE educational session. All MS relapse therapy decisions should be made under the guidance of your healthcare professional. ©2012 ©20 12 Que Questc Questcor stcor or Pha Pharma Pharmaceuticals, rmaceu ceutic ticals als, Inc IInc. nc. PM PM-54 PM-542-03 542-0 2 033 11/1 111/12 1/122

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


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

BIKE MS: EXPRESS SCRIPTS GATEWAY GETAWAY RIDE » SEPTEMBER 7-8, 2013 » COLUMBIA, MO » 20, 40, 75 AND 100 MILE ROUTE OPTIONS EACH DAY »

You’re invited to join us at a Novartis MS Education Link Event Hear a medical specialist share information about multiple sclerosis (MS), learn about a prescription treatment option, and connect with people in your community living with MS.

Featured Specialist:

Mary Kay Fink, RN

8/27/13 at 6:00PM Villa Farotto 17417 Chesterfield Airport Rd. Chesterfield, MO 63005

9/17/13 at 6:00PM Tanglefoot Steak House 1198 West Gannon Drive Festus, MO 63028

Featured Specialist:

Myles Goble, MD 8/27/13 at 6:00PM 44 Stone Public House 3910 Peachtree Drive Columbia, MO 65203

Experience Bike MS – a two-day cycling getaway through gorgeous Missouri countryside. When you spend the weekend with 3,000 cyclists enjoying live entertainment, stocked rest stops, delicious meals, our Beer Garden, and the energy of Team Tent Village, you’ll know that Bike MS isn’t just any ride. Gateway Getaway Ride 2013

This is Bike MS.

Register Today:

GATEWAYMSBIKERIDE.ORG OR 800.344.4867

Heather Popham, RN, NPC 9/12/13 at 6:00PM Sunset 44 118 West Adams Avenue Saint Louis, MO 63122

Tell or bring a friend! Accessible to people with disabilities. Light meal served. Parking will be validated. Space is limited. Please RSVP by calling 1-866-682-7491.

Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080 ©2013 Novartis 1/13 T-XMG-1234210

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

T-XMG-1234210


27

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

TALK MS

TAKING THE FIRST STEP WAS THE BIGGEST BY KIM WILLIAMS CO -FACILITATOR TALK MS GROUP, COLUMBIA, MO

August 9, 2011. It’s not the kind of anniversary anyone really wants, but that is the date on which I was diagnosed with MS. Three weeks before my 40th birthday, I got the news. My initial reaction was calm resolve, followed very shortly by panic, which quickly dissolved into information gathering. Thankfully, in the process of getting information, I registered with the National MS Society. When I received my first issue of MS Connection and discovered a Talk MS group here in Columbia, I was hesitant but hopeful, not sure that a support group would be a forum in which I would be comfortable, but looking for some source of support. At my first meeting, I was quiet and observant, listening attentively to other attendees, all of whom had been diagnosed much longer than I, share their experiences. At some point, someone asked me a question. Though I no longer remember what that question was, I remember the sudden rush of words pouring out of me, questions, fears, anxieties about this new part of my life, and I remember the amazing support I received. When our group attendance started to wane, I watched with sorrow and wondered what would happen. I realized if I wanted change, I

would have to help make that change, and I decided to become a cofacilitator.

I am excited about the future of the Talk MS group in Columbia. Our monthly group has AFTER BEING INITIALLY RESERVED AT HER FIRST decided we want to have quarterly TALK MS GROUP MEETING, educational KIM WILLIAMS IS NOW A offerings, and CO-FACILITATOR AT HER we’re looking into alternative GROUP IN COLUMBIA, MO. pain management strategies and FIND A TALK MS GROUP dealing with the NEAR YOU PAGES 28-29. psychological impact of changes in our bodies and abilities as two upcoming topics. As a group, we have decided the rest of our meetings will be primarily dedicated to support and sharing. I’m thankful to now be a source of that support from which I benefitted so greatly when I was diagnosed. While my “anniversary” isn’t something I relish, I’m so grateful for the opportunity to give back by becoming a facilitator, and I’m hopeful to see continued growth as we move forward with our Talk MS group in Columbia. n


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MS CONNECTION: SUMMER 2013

TALK MS GROUPS MISSOURI Camdenton Cape Girardeau

Talk MS Groups bring together people who share a common life experience for support, education, and mutual aid. They are led by trained volunteers who also have a connection to MS.

3/20, 6/19, 9/18, 11/20 6-7 p.m. 3rd Saturday

(no April meeting)

10 a.m.

Camden County Library 99 Rodeo Road, Camdenton, MO 65020

Christy Bays, cell (573) 480-7932 cm2owl@hotmail.com

St. Francis Health & Wellness Center, Rm. 1 Sharon 150 S. Auburn, Cape Girardeau, MO 63703 (573) 332-8148

Columbia

Rusk Rehabilitation Center 3rd Wednesday 315 Business Loop 70 West 6-8 p.m. Columbia, MO 65203

Crystal City/ Festus

2nd Tuesday 1 p.m.

Jefferson City

1st Monday 6 p.m.

New London

2nd Tuesday 7 p.m.

Disability Resource Association 420B S. Truman Bl. Crystal City, MO 63019 Coca-Cola Bottling, Meeting Room 605 Washington, Jefferson City, MO 65109 Ralls County Health Department Building 405 W. 1st Street New London, MO 63459

Suzanne (573) 817-4673 or sdechazal@yahoo.com Kim Williams kimik1ster@gmail.com Marlene (636) 464-2533 Sharon webradleys@yahoo.com Rebekah Walters (573) 808-4066 Rebekah.Walters@vr.dese.mo.gov

Debby (573) 267-3365 mlrdsr@att.net

Last Thursday 6:30 p.m.

Rolla Presbyterian Manor 1200 Homelife Plaza Rolla, MO 65401

Donna at (573) 263-4896 or dkreisler@centurylink.net Michelle at (573) 465-0453 or mkrrdr@gmail.com

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

Sally (417) 469-4842 3rd Wednesday Ozark Medical Ctr. Shaw Medical Bldg. 2nd Dianna dianna.sigert@ 4:30 p.m. Fl. 909 Kentucky St., West Plains, MO 65775

Rolla

NEW GROUP

ozarksmedicalcenter.com

ST. LOUIS METRO Affton

3rd Wednesday Weber Road Library 7 p.m. 4444 Weber Rd, St. Louis, MO 63123

Generation OptiMiStic for 1st Saturday people in their 10 a.m. 20s, 30s & 40s April 14, July 14, O’Fallon Oct. 13, 2-3 p.m. 3rd Sunday St. Charles 3 p.m. West County 4th Wednesday Prayer & 6:30-8 p.m. Health

Linda (314) 544-5623

NMSS Office Gateway Area Chapter Michelle (636) 447-5407 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Conference Room A/B Barnes-Jewish Hospital, St. Peters, MO 63376 Hardee’s Restaurant, 501 Mid Rivers Mall Dr., St. Peters, MO 63376 Sachs Library 16400 Burkhardt Place Chesterfield, MO 63017

Debbie at debtalkms@yahoo.com Jim (314) 602-4578 Rose Marie sqsace@sbcglobal.net


29

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

TALK MS GROUPS ILLINOIS Alton/River Bend

3rd Tuesday 7-9 p.m. 2nd Sunday Belleville/ reconvening in O’Fallon September 2:30 p.m. Central 4th Monday Illinois 7 p.m. 1st & 3rd Highland Wednesday 10:30 a.m. S’myelin Gang 4th Tuesday of Litchfield 6:30 p.m. June 26, 7 p.m. Metro East Aug. 28, 7 p.m. Oct 23. 7 p.m.

The United Presbyterian Church, 2550 Rock Hill Rd., Wood River, IL 62095

Lisa (618) 258-0615

First United Methodist Church Amy (618) 235-4226 504 East Highway 50, O’Fallon, IL 62269 Richland Memorial Hospital 800 East Locust St., Olney IL 62450 Weinheimer Community Center 1100 Main Street Highland, IL 62249 Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056

Tony (618) 302-1333 tmadmz@frontier.com Karen at 618-830-5681 momferguson5@gmail.com

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

Diane (618) 235-8823 Earhart500@aol.com

Meredith (217) 556-4418

SPECIALIZED GROUPS Couples Group

Varies, contact Varies, contact for information for information NMSS Office Creative Art 3rd Saturday 1867 Lackland Hill Parkway Experience 10 a.m. St. Louis, MO 63146 1st Tuesday in David C. Pratt Cancer Center MS Fun, Feb., May, Aug. Mercy Hospital Friends & & Nov. 607 S. New Ballas Rd. Food 6 p.m. St. Louis, MO 63147 Veterans Admin. Medical Center Veterans with 2nd Wednesday 1 Jefferson Barracks Dr. MS 10 a.m. St. Louis, MO 63125 1st Tuesday in CarePartner David C. Pratt Cancer Center Mercy Hospital Feb., May, Aug. and Family 607 S. New Ballas Rd. & Nov. Group St. Louis, MO 63147 6 p.m.

jsalacki2@gmail.com laurapieczynski@yahoo.com michellekeating@juno.com Michelle (314) 251-6400 Debbie (636) 579-0264 debra.morrissey2012@yahoo.com Penny (314) 652-4100 ext. 63274 Stacey (800) 344-4867 stacey.sickler@nmss.org


30

MS CONNECTION: SUMMER 2013

STAY HEALTHY WITH MS

Studies show exercise not only improves your overall health and well-being, but also helps manage many MS symptoms. Move forward through exercise and find a program in your community or become an expert in using a healthy lifestyle to help manage MS.

Financial assistance is available to help you pay for therapeutic recreation classes and memberships. In some cases, assistance with transportation may also be available. To apply, a completed financial assistance application and confirmation of MS diagnosis from your doctor is required. Amount of financial assistance is derived from a sliding scale based on the information from the financial assistance application. Please contact the facility of choice and determine if the facility will meet your desired needs to ensure a rewarding experience. Please note the Gateway Area Chapter makes every effort to ensure all facilities are accessible to meet the needs of people living with MS. If you think the facility would like education on MS, please contact the Chapter office at 1-800-344-4867 option 1. Applications are accepted year-round, however completed applications will only be approved during January, April, July and October. For more information go to www.gatewaymssociety.org g Stay Healthy with MS.

AQUATICS PILATES

TAI CHI

YOGA

ZUMBA

THERAPEUTIC RECREATION SITES ST. LOUIS Bridgeton Community Center Carondelet Park Rec Plex

ADDRESS 4201 Fee Fee Road Bridgeton, MO 63044 930 Holly Hills Ave St. Louis MO 63111 50 Gay Avenue Center of Clayton Clayton , MO 63105 1528 Locust Street Downtown YMCA St. Louis, MO 63103 Dragonfly Health Spa & 1272 A Jungermann Yoga St. Peters, MO 63376 Edward Jones Family 12521 Marine Avenue YMCA St. Louis, MO 63146 Pershall Road Emerson Family YMCA 3390 St. Louis, MO 63135 JCC - Marilyn Fox 16801 Baxter Road Building Chesterfield, MO, 63005 JCC - Staenberg Family 2 Millstone Campus Drive Complex St. Louis, MO 63146 Jefferson College 1000 Viking Drive Hillsboro, MO 63050 Kirkwood Family 325 N. Taylor YMCA St. Louis, MO 63122 Maryland Heights 2344 McKelvey Road Centre Maryland Heights, MO 63043

CONTACT 314-739-5599 314-768-9622 314-290-8511 314-436-4100 636-498-5544 314-439-9622 314-521-1822 314-442-3428 314-432-5700 Christina 636-789-3000 314-965-9622 314-738-2599

ACTIVITIES OFFERED


31

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

THERAPEUTIC RECREATION SITES ST. LOUIS CONT.

ADDRESS 1900 Urban Drive Mid-County YMCA St. Louis, MO 63144 Olivette Community 9723 Grandview Drive Center St. Louis, MO 63132 Old Tesson, Suite 220 Mercy Medical Building 12348 St. Louis, MO, 63128 2085 Bluestone Drive Show Me Aquatics St. Charles, MO 63303 South City Family 3150 Sublette Avenue YMCA St. Louis, MO 63139 South County Family 12736 Southfork Road YMCA St. Louis, MO 63128 St. Charles County 3900 Shady Springs Lane YMCA St. Peters, MO 63376 The Cancer Support 1058 Old Des Peres Rd Community St. Louis, MO 63131 Des Peres Road The Lodge in Des Peres 1050 St. Louis, MO 63131 The Pointe at Ballwin 1 Ballwin Commons Circle Commons Ballwin, MO 63021 990 Horan Dr Riverchase Fenton, MO 63026 Washington Four 400 Grand Avenue Rivers Family YMCA Washington, MO 63090 Webster Groves Family 226 East Lockwood Avenue YMCA Webster Groves, MO 63119 Wellbridge Athletic 7620 Forsyth Boulevard Club Clayton , MO 63105 Wellbridge Athletic 998 Woods Mill Road Club Town & Country, MO 63131 West County Family 16464 Burkhardt Pl YMCA Chesterfield, MO 63017 3305 Jamieson Ave. Yoga Saint Louis St. Louis, MO 63139 233 Lamp & Lantern Village Z Power Fitness Town & Country, MO 63017

AQUATICS PILATES

TAI CHI

CONTACT

ACTIVITIES OFFERED

314-962-9450 314-781-9020 800-344-4867 Linda 314-729-0181 Jeff 636-896-0999 314-644-3100 314-849-9622 636-928-1928 Kathryn 314-238-2000 314-835-6150 636-227-8950 618-343-0067 636-239-5704 314-962-9622 314-746-1500 636-207-3000 636-532-3100 Bruce 314-645-9785 Nancy 314-378-8639

YOGA

ZUMBA


32

MS CONNECTION: SUMMER 2013

THERAPEUTIC RECREATION SITES MID-MISSOURI Columbia Activity and Rec. Center

ADDRESS 1701 W. Ash Street Columbia, MO 65203 904 Elm St. Suite 210. Elm Street Yoga Columbia, MO 65201 424 Stadium Boulevard Jefferson City YMCA Jefferson City, MO 65101 1127 Adams Street Mexico Family YMCA Mexico, MO 65265 Pilates & Yoga at Chapel 2010 Chapel Plaza Ct. Suite A Hill Columbia, MO 65203 ILLINOIS ADDRESS 1200 Esic Drive Edwardsville YMCA Edwardsville, IL 62025 Jerseyville Wellness 400 Maple Summit Rd Center Jerseyville, IL. 62052 Logan College Road John A. Logan College 700 Carterville, IL 62918 1 Town Center Drive Maryville YMCA Maryville, IL 62062

CONTACT 573-874-7700 Linda 573-657-2614 573-761-9021 573-581-1540 573-446-0224 CONTACT Jennifer 618-498-6402 Chris 618-985-3741 618-346-5600

227 N. Market Mascoutah, IL 62258

618-566-8758

Monroe Physical Therapy & Sports Medicine

357 Marketplace Drive Freeburg, IL 62234

618-539-2020

O’Fallon Community YMCA

284 North 7 Hills Road O’Fallon, IL 62269

618-628-7701

One-O-One Yoga Sukha Yoga Center

101 S Graham Ave # 1 Carbondale, IL 62901 18 South High Street Belleville, IL 62220

Sarah 618-457-8186 Sarah 618-236-9642

SOUTHEAST MISSOURI

ADDRESS

CONTACT

Black River Coliseum

301 South 5th Street Poplar Bluff, MO 63901 1920 Whitener Street Cape Girardeau, MO 63701 2620 N. Westwood Blvd. Poplar Bluff, MO 63901 1504 Preacher Roe #2 West Plains, MO 65775 422 West Pine Street Poplar Bluff, MO 63901

573-686-8001

PARC Fitness Center Simply Yoga Xtreme Gymnastics Cheer and Dance

ACTIVITIES OFFERED

618-656-0436

Mascoutah Senior Center

Cape Girardeau Municipal Pool

ACTIVITIES OFFERED

Pat 573-335-4040 Mindy 573-686-5985 Vicki 417-293-1184 Christi 573-785-3780

ACTIVITIES OFFERED


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

You’re

invited!

Know Your Options: Exploring an FDA-approved treatment for MS relapses

If you’re looking to learn about different options for treating your MS relapses, you plus one caregiver or friend are invited to this FREE educational session where MS healthcare professionals will discuss:

Ý The difference between MS relapses and pseudo-relapses Ý The importance of treating your MS relapses Ý How to talk about your MS relapses with your healthcare provider Ý Available treatment options for MS relapses Ý Insights shared by others living with MS

Register by Monday, July 22, 2013. Call 1-877-219-0410 or visit www.msrelapseprogram.com Use Program ID # 1380. Complimentary meal and parking will be provided.

Location

The Old Spaghetti Factory 17384 Chesterfield Airport Road Chesterfield, MO 63005

Date

Tuesday, July 23, 2013

Check-in

5:30 PM

Time

6:00 PM

Presented by Max Benzaquen, MD St. Luke's Hospital Chesterfield, MO

Remember: You and a guest are welcome at this FREE educational session. All MS relapse therapy decisions should be made under the guidance of your healthcare professional. ©2012 ©20 12 Que Questc Questcor stcor or Pha Pharma Pharmaceuticals, rmaceu ceutic ticals als, Inc IInc. nc. PM PM-54 PM-542-03 542-0 2 033 11/1 111/12 1/122

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


34

MS CONNECTION: SUMMER 2013

P Program located

CHAPTER CALENDAR

in this area.

DATE

PROGRAM/ EVENT

PG. #

June 10

Teleconference

36

June 15

Research MS

13

June 20

Connections

13

P

June 27

Wellness Network

18

July 8

Teleconference

36

' '

July 9 July 2126

Connections

13

Camp Hope

11

July 25

Wellness Network

18

August 12

Teleconference

36

August 22

Wellness Network

18

August 24

Research MS

13

Sept. 9

Teleconference

36

Sept. 12

Connections

13

Sept. 21

Research MS

13

Sept. 24

Research MS

13

Sept. 26

Wellness Network

18

Available via

' telephone

;

Available via live-stream

ST. LOUIS ILLINOIS SOUTHERN MIDSEMETRO ILLINOIS MISSOURI MISSOURI

'

'

'

'

'

P

' '

' '

' '

' '

P P

' ' '

' ' '

' ' '

' ' '

' ' '

'

'

P

'

'

'

P P P

'

'

'

'

'

SHARE WHAT YOU KNOW - MSCONNECTION.ORG Multiple sclerosis destroys connections inside us. It disconnects the mind from the body and people from each other. Maybe, by connecting all of our knowledge, and hope, and experience, we can gain a new understanding of how to move forward. SHARE WHAT YOU KNOW Find, store and share meaningful updates, posts, videos, articles and other content about the topics you care about most. Connect with people, groups and discussions that relate to the topics that shape your world. Join conversations with others who share your experiences, challenges, and interests, and put the best resources available to work for you, so you can move your life forward in the way that feels right for you.


35

GATEWAYMSSOCIETY.ORG | 1-800-344-4867

PROGRAM REGISTRATION

[ ] MS Wellness Fair June 8

Address_________________________________

[ ] Teleconference June 10

COST: FREE PROGRAM

[ ] Research MS, Columbia, MO June 15

COST: FREE PROGRAM

[ ] Wellness Network June 27

COST: FREE PROGRAM

[ ] Teleconference July 8

COST: FREE PROGRAM

Name__________________________________ City/State/Zip___________________________ Home phone____________________________ Work phone_____________________________ E-mail_________________________________ Date of Diagnosis_________________________ Payment Information ( ) Fee waiver requested ( ) Check enclosed payable to NMSS ( ) Visa ( ) MC ( ) Disc ( ) Am. Ex Card # ______________________________ Expiration Date:_______________________ Send to: National Multiple Sclerosis Society 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440 Register online go to www.gatewaymssociety.org, g “Chapter Calendar.” Publication of the National Multiple Sclerosis Society

Contact Us at: National MS Society, Gateway Area Chapter 1867 Lackland Hill Parkway, St. Louis, MO 63146 314-781-9020 | 1-800-344-4867 | www.gatewaymssociety. org MS Connection © 2013 A quarterly magazine published by the National Multiple Sclerosis Society, Gateway Area Chapter. Chapter President • Phyllis Robsham Writers • Joe Cavato • Meghan Freeman • Myles Goble, MD • Kathi Taylor • Karen Tripp • Henry Vanston • Kim Williams

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.

COST: $10/PERSON

[ ] Connections, Jefferson City, MO July 9 COST: FREE PROGRAM [ ] Camp Hope, Makanda, IL July 21-26

COST: $150/PERSON

[ ] Wellness Network July 25

COST: FREE PROGRAM

[ ] Teleconference August 12

COST: FREE PROGRAM

[ ] Wellness Network August 22

COST: FREE PROGRAM

[ ] Research MS, Rend Lake, IL August 24

COST: FREE PROGRAM

[ ] Teleconference September 9

COST: FREE PROGRAM

[ ] Connections, Marion, IL September 12

COST: FREE PROGRAM

[ ] Research MS, Cape Girardeau, MO September 21 COST: FREE PROGRAM [ ] Research MS, Maryville, IL September 24

COST: FREE PROGRAM

[ ] Wellness Network September 26

COST: FREE PROGRAM

SAVE THE DATE FOR THESE UPCOMING PROGRAMS Family Weekend, Touch of Nature, Makanda, IL October 18-20 John L. Trotter Research Program November 16


NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Permit No. 3914 St. Louis, MO

Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146

LIVING WITH MS

MIDWEST TELECONFERENCE SERIES DIAL. LISTEN. LEARN. MY FAMILY HAS MS

June 10, 7-8 p.m. • Learn how MS impacts all family members. • Explore communication methods and strategies for dealing with family life challenges. Presented by: Rosalind Kalb, PhD, Vice President of the NMSS Clinical Care Network WAKE UP! July 8, 7-8 p.m. • Learn why fatigue and sleep issues are two of the most common and debilitating MS symptoms. • Explore medical treatments, strategies and behavioral changes that may help. Presented by: Douglas Schell, MS Certified Nurse, Mid America Neuroscience Institute

PROBIOTICS AND MS August 12, 7-8 p.m. • Understand probiotics as an MS treatment option. • Hear about MS research projects based on the hygiene hypothesis. Presented by Dr. Loren Rolak, Director, Marshfield Clinic MS Center COMPLEMENTARY AND ALTERNATIVE MEDICINE FOR MS September 9, 7-8 p.m. • Learn what CAM therapies are and their benefits and risks to make informed decisions • Understand the importance of talking with your physician about CAM. Presented by Patricia Kennedy, RN, CNP, MSCN, Can Do MS Nurse Educator and Programs Consultant

MS Connection - Summer Edition 2013  

Inside this issue. Team Kaldi's hits Million Dollar Mark, Making a Run for It, Firefighter Steps Up for Colleague, Chapter President Moving...

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