SUMMER 2012 gateway area chapter
MS Connection magazine We don’t just ride, we Bike MS.
INSIDE 03 THIS ISSUE
take control through education
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12
20
rising from the wheelchair at walk ms
Brendie’s b-bops ride to make a difference
talk ms group leader gets more than she gives
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MS connection: Summer 2012
INSIDE THIS ISSUE Take Control Through Education.... 3 Rising from the Wheelchair.......... 4-5 Town Hall Meeting......................... 5 Research........................................ 6-7 Challenge Walk MS...................... 8-9 Volunteer Columns....................10-11 Bike MS.....................................12-13 New Connections...........................13 Ask the Professional...................14-15 John L. Trotter Research Program....15 MS License Plate.............................16 Family Programs.............................16 MS Centers.....................................17 MuckRuckus MS.......................18-19 Talk MS......................................... 20 Board of Directors...........................21 Midwest Lending Library.............. 22 Research on the Road.................... 22 Talk MS Groups....................... 24-25 Therapeutic Recreation.............. 26-28 Wellness Network...........................29 Midwest Teleconference Series........29
Letter from the president There is no doubt that MS can be discouraging, depressing, and even disabling. But more often when I meet people living with MS, I see courage, confidence, and control. Through our fundraising events, I meet people who have taken it upon themselves to raise funds, raise awareness, and drive us toward a cure. I’m inspired every time I see someone living with MS push themselves to cross the finish line at Walk MS, Bike MS, Challenge Walk MS, or MuckRuckus MS. At our social and family events, I see people making a conscious effort to connect with and support others living with MS. I am always impressed by the desire to learn that I witness at our educational and research programs. Information is critical in making informed decisions about treatment, symptom management, and the many financial questions that accompany a diagnosis of MS, and we work to provide you with accurate, trustworthy information from experts in their fields. Our ultimate goal, of course, is to control the disease completely – to stop disease progression, restore lost function, and end the disease forever. This issue of the MS Connection Magazine is about taking control of your MS. With stories of people in our community who have taken control in different ways, columns with advice on taking control of MS in your life, and ads throughout for our upcoming educational and social programs, we hope that this issue will help build your courage, your confidence, and help you take control of MS in your own life. Sincerely,
Chapter Calendar........................... 30 Program Registration......................31
Phyllis Robsham, Chapter President
CarePartner Programs.....................32
P.S. Please let us know what you think of the new format for the magazine! Email your comments to info@gatewaymssociety.org.
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living with ms
take control through education About SSDI Trying to access resources or programs that a person living with MS may be entitled to can be overwhelming. Questions race through your head like: How do I get Disability? What government programs am I eligible for? Should I stop working? What’s SSDI? What will Medicare and Medicaid cover? What does my insurance cover?
While all of this can be frustrating and overwhelming, you can take control by knowing as much as you can about your situation. Here are some things to keep in mind: • Get organized. No one else will do that for you. Get a binder and organize it keeping insurance files together, a record of doctor’s visits, when you were on what medications, hospital stays, a list of frequently called numbers, etc. The more you know the better off you’ll be. • Actually read your insurance plan. Know what your insurance covers for medications, office visits, physical or occupational therapy. Don’t hesitate to call your insurance company. That’s why they are there. • Do your research. Here are some useful web sites: Social Security Disability - ssa.gov, Medicare – mymedicare.gov, Medicaid – medicaid.gov, Missouri Bar Association – mobar. org, help with prescription medication costs – needymeds.org (most drug companies have patient assistance). • Remember Social Security Disability, Medicare and Medicaid are designed to be supplemental, they are not made to support all of your needs. Do not plan to live off these programs.
To be eligible for Social Security Disability insurance you must have a persistent, chronic condition that is going to last longer than a year and you must make less than $1,000 a month. Just because you’re disabled doesn’t mean you’ll qualify and it can take 6 months to know if you’re going to get approved for SSDI. If you do qualify for SSDI, you won’t get Medicare until the 25th month, so you’ll need insurance through COBRA, your spouse’s plan, or you can buy into a high-risk insurance pool. Most people are denied the first time they apply for SSDI. If you are denied, make sure you appeal it within 60 days.
About Medicare Medicare is health insurance for older people who are disabled. Medicare occasionally covers a limited amount of things like in-home care, respite care, nursing home placement, and longterm care, but doesn’t pay for structure changes to make your home accessible. It will pay for things like scooter repair. Utilize the resources at mymedicare.gov where you can include your doctors, medications, etc. and it will generate the top three plans for you based on co-pays and deductibles. Open enrollment is October 15 to December 7 when you can change your Medicare plan without any penalties.
About Medicaid Medicaid is jointly funded by the federal and state governments for low income people who are disabled. It does pay for skilled nursing home placement and now covers incontinence products. Go to healthcare.gov.
4 walk ms/wellness
rising from the wheelchair When Sharon Greene was diagnosed with MS some 30 years ago, there wasn’t much she could do. There weren’t any therapies and not much was known about the disease. “The only person I knew who had MS was 31 and blind and was paralyzed so I was devastated when I was told ‘you have MS,’” Sharon said. “I went to the library and read up on it and back in those days it said you could die from it. There were no treatments at that time, it was just go home and live with it.” So that’s what Sharon did. She stopped working full time as an elementary counselor and tried to take care of herself. When she turned 65 she wanted to do something more and decided to volunteer. During her volunteer work at the West County MS Center she learned about exercises for empowering people with MS and about the Chapter’s wellness programs. She learned how a volunteer at the Chapter, Toni Kodner, used to be in a wheelchair but was doing great after yoga and therapy. “I thought maybe it was for me,” Sharon said. Through some nudging by Toni, Sharon tried an adaptive yoga class where the instructors adjusted exercises to what she could do. “The instructors know how you function and know how you modify a pose which is really
MS connection: Summer 2012
valuable,” Sharon said. “They made me feel part of the group and they were going to do anything they could to help me get through it. I kept going. I remember the first day the hour and a half was really long but on the way home I felt like a million bucks.” Encouraged by that, Sharon attended an MS Wellness Fair and talked to some therapists about what else she could do. “They said they thought I could walk again,” Sharon said.
“it’s truly amazing. i seem to get better as i get older.” That, along with the motivation of trying to keep up and play with her first grandson, encouraged Sharon to take her MS into her own hands and continue to do yoga and physical therapy. The Chapter helped with transportation costs and Sharon started a Walk MS team with the goal of walking the event in Clayton. In April, Sharon, with her team’s support, completed the one-mile walk in Clayton. “To hear the crowd cheering and the band, the cowbells, I never dreamed it could be such a phenomenal thing,” Sharon said. “It was amazing to get all the hugs. When you’re in a wheelchair people are kind of stand-offish and don’t reach down to hug you; there is kind of a barrier around you. So it’s pretty cool standing up. It was truly amazing.” Sharon does have one regret – that she didn’t
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women of courage
On May 3, the Chapter honored Michelle Keating and Mary Eleanor Farrell at the annual Women on the Move Luncheon at The Ritz -Carlton in St. Louis.
With team ‘if you think it - you can’ sharon greene walked a mile at walk ms in clayton. sharon used the chapter’s wellness program to help get her out of the wheelchair. take matters into her own hands earlier and see what the Chapter could provide.
Chapter President Phyllis Robsham is flanked by women of courage winners michelle keating (left) and mary eleanor farrell.
“It’s phenomenal the gains that the National MS Society has made,” she said. “Unfortunately I have not utilized as many of the services as I should have. I never really used the services because I never really thought I could get to them. But I learned that transportation was available and I’ve been involved in Toni’s Wellness Network (teleconference calls) and it’s been great.”
living with ms
After more than 30 years of living with MS, Sharon is still encouraged about the future.
june 24, 1-3 p.m.
“It’s truly amazing,” she said. “I seem to get better as I get older.” n
town hall meeting Take advantage of this chance to: learn about resources available to you, be able to provide feedback on what you expect from the Chapter, help us improve how we serve people affected by MS and get a free meal!
west plains, mo Ozark Medical Center, 1100 Kentucky Ave. West Plains, MO 65775 Register at gatewaymssociety.org g Chapter Calendar.
6 research
Connecting the dots: vitamin D and MS by Dr. Linda Buchwald
Exciting new research is beginning to identify both genetic and environmental factors involving vitamin D that could increase one’s risk for developing MS and could influence disease progression. Research is also targeting vitamin D as a potential therapy, with clinical trials being planned or already underway to determine whether it can prevent or treat MS.
MS connection: Summer 2012
the latitude effect There’s a long-standing observation that population rates of MS increase the farther away one is from the equator and from the sun, exposure to which is our major source of vitamin D. Could the two be connected? Researchers have been exploring that very question. Studies of who gets MS have confirmed that higher levels of sun exposure and higher blood levels of vitamin D were both associated with decreased risk of a first demyelinating event— often the first indicator of developing MS. In addition, there is evidence that high levels of vitamin D in utero and during adolescence and adulthood also have a positive effect on reducing the risk of developing MS. Other research suggests that vitamin D may have an effect on the inflammatory processes that occur during MS flares. In a small safety study at St. Michael’s hospital in Toronto, researchers found that immune T cells involved in MS attacks were suppressed in people who had higher blood levels of vitamin D.
Genes, vitamin D and MS Studies done in families where multiple individuals have MS have resulted in new information that potentially links genetic factors related to vitamin D activation. In December, Canadian and British researchers published the results of a study that set out to look for rare genetic changes that could explain
John, diagnosed in 2001
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strong clusters of MS in some families. They studied DNA in 43 individuals selected from families with four or more members with MS. The team compared the DNA changes they found against existing databases, and identified a change in the gene CYP27B1 as being of interest. The CYP27B1 gene plays an important role in converting Vitamin D to a biologically active form. The researchers then looked for the same rare gene variant in over 3,000 families of unaffected parents with a child with MS. They found 35 parents who carried one copy of this variant along with one normal copy. In every one of these 35 cases, the child with MS had inherited the mutated version of the gene.
The road forward Further research now underway will determine if vitamin D may have preventative as well as disease-modifying effects. In EAE, the animal model of MS, vitamin D supplementation prevents and slows the progression of the disease, while vitamin D deficiency worsens the disease. We also know that high vitamin D levels in people with MS have been associated with decreased risk of exacerbations and less severe disability. To what extent vitamin D can influence the course of MS once someone’s been diagnosed is still unclear; however, research is being planned to clearly define the role of vitamin D in the prevention, progression and treatment of MS. For instance, researchers at Johns Hopkins University are leading a multicenter controlled clinical trial funded by the Society to determine whether
7 high-dose vitamin D added to standard therapy with Copaxone further reduces disease activity in people with MS. (To learn more about this trial, which is still recruiting participants, visit www.clinicaltrials.gov/ct2/show/NCT01490502.) What is clear is that vitamin D deficiency is extremely common in many parts of the country. The optimal approaches for vitamin D supplementation in the general population and in those with MS have not been established, yet it is important that everyone take a minimum daily amount of vitamin D supplement. I recommend at least 2,000 IU and no more than 4,000 IU per day for my own patients with MS; however, official recommendations are lower (see www.ods.od.nih. gov/factsheets/VitaminD-QuickFacts), so ask your healthcare providers what they recommend for you. Due to the inherited risk of MS and the possible preventative effect of vitamin D supplementation, also discuss the possible implications of vitamin D deficiency and supplementation for your children. n Dr. Linda Buchwald is chief of Neurology at Mount Auburn Hospital in Cambridge, Mass., and the medical director of the Mount Auburn Hospital Multiple Sclerosis Care Center. She is a trustee of the Society’s Greater New England Chapter and Clinical Advisory Committee member. This article originally appeared in the Greater New England Chapter’s Spring 2012 MS Connection.
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challenge walk ms
motivation & inspiration defines team possible To push yourself through the 3 days and 50 miles of the Dean Team Automotive Challenge Walk MS you need to be highly motivated. To do it 10 times, you need to be inspired. Veteran Challenge Walker Julie Stanglein has plenty of motivation and inspiration. Julie started at the very beginning of Challenge Walk MS with her sister Jennifer Hope because their father has lived with MS since 1991. “My sister heard about it on the radio and said we have to do this,” Julie said. “We would walk every mile thinking ‘We’d be trudging up a terrible hill, our feet would be blistered, but we’d think ‘Dad can’t walk so we have to.’ So that was really the motivation.” In 2006, they thought about taking a break from Challenge Walk MS, but then Julie was diagnosed with MS and they gained another motivation. “With me being diagnosed, the motivation is I have to keep walking so my kids can keep walking,” Julie said. “That’s what I tell myself, so one day there’s a cure. Obviously there’s some kind of genetic thing going on in my family with MS and I don’t want my kids to have to deal with it.”
members of team possible walked 50 miles in 3 days to help create a world free of MS.
“It’s about pushing the envelope to see if my body can do it and just how far I can go.” Walking 50 miles in 3 days became a bit of a different animal after Julie was diagnosed. “It’s about pushing the envelope to see if my body can do it and just how far I can go before my body does something weird,” Julie said. “I was more nervous after being diagnosed but I just take it step by step and am more aware of limits. When I get hot now I kind of fall apart – my brain and body can’t go much further so I need to be more self-aware. Finishing Challenge Walk has helped me manage my MS better and be more aware of what’s going on with
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small change adds up
Challenge Walk MS participant Becky Salacki’s fundraising campaign got a big boost from Hardee’s this year.
nearly 200 walkers participated in Challenge Walk ms at washington university, st. louis county and city june 1-3 my body.” While Julie probably doesn’t look forward to the blisters of Challenge Walk MS – she can’t wait to see her Challenge Walk MS friends. “There’s a great camaraderie with the Challenge Walkers,” Julie said. “For me, Challenge Walk is a rite of spring. We may not keep in touch with those people throughout the year, but there’s a comfort in seeing people who have been through the physical and emotional experience of Challenge Walk. There’s a lot of emotion that goes into going over the finish line. It’s just good to know that a community is out there of people who know exactly what you’ve been through.”
Becky walks for her husband Joe, a former Hardee’s employee, who was diagnosed with primary progressive MS 10 years ago. Becky is the Director of Franchise Services Administration for CKE Restaurants, and her franchisees asked what they could do to help her and Joe. 64 restaurants ran a “Donate Your Change” campaign in 2011 and 2012 with donation canisters in stores and drive-throughs. Hardee’s also donated food for both MuckRuckus MS and Challenge Walk MS this year. Including the $20,000 from Hardee’s, Becky has raised more than $36,000 this year to help create a world free of MS.
Julie was excited to welcome a couple of new Challenge Walkers to TEAM (Take Every Adventure to Make a Cure) Possible this year – her son Kurt and the son of her teammate Christine Runge, Adam. “Kurt is really motivated and it’s really neat,” Julie said. “They helped at our team’s trivia night and sold raffle tickets and they both raised a lot of money for being young kids.” n
becky salacki has raised more than $36,000 for Challenge Walk MS, with $20,000 through a Hardee’s fundraiser.
10 volunteer column
walking into volunteering
Volunteering for the National Multiple Sclerosis Society Gateway Area Chapter has really changed my life. I was diagnosed with MS in 2002 and first got involved with the Chapter at Walk MS in 2003. Every year my team and I walk in St. Peters to raise money for the Chapter and all they do. The first walk we had a very small team and we’ve grown every year. A lot of our team members are friends of friends and the word spread. It’s contagious to walk and be involved! I love the excitement I see on all the team member’s faces when we are together walking and sharing where we are now. I truly love everyone on my team and feel so encouraged and supported by them. Their support makes me want to support others even more. When I first started walking, I barely knew half of what the Chapter does for the 6,800 people living with MS in the area. I had no idea everything they do for them and their families. Three years ago I volunteered for one of the other area walks, and I was hooked on volunteering as much as I could. I have since joined as an MS Ambassador to help spread awareness of MS and the Society. I’ve gone to events where I get to meet the best
MS connection: Summer 2012
people and learn more about what the Society is doing for research. It’s so encouraging seeing people with MS who are going out and living their lives and spreading awareness despite having MS. There are so many opportunities to get involved and encourage other people to get involved pam bascio as well. Last year I had Walk MS volunteer my daughter’s Girl Scout MS ambassador troop help fold t-shirts and do mailers for Walk MS at the Chapter office. They loved it and asked so many questions about MS, it was wonderful for them to understand more and they felt so good about it. Do you know that there are only about 30 employees at the office but they put on all of these fabulous events and go out and support people with MS every day? They wouldn’t be able to do that without volunteers! Imagine the connections you can make when you volunteer! There is something for you. Go to gatewaymssociety.org g Volunteer. n
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volunteer column
volunteering can be addictive
Ten years ago I thought I’d “dab my toe” in volunteering. I’ve found it addictive and I’ve thoroughly immersed myself. The rewards one gets from volunteering outweigh the service you give. I would not have increased my circle of friends (other volunteers, staff, clients and exercise buddies), learned more about having MS, and increased my happiness 200% had I not first “dabbed my toe.” I wear many volunteer hats. I am a TeleFriend volunteer, Wellness Program volunteer, Wellness Network facilitator, Beginning Conversations volunteer, and a volunteer at Walk MS in Clayton. I also volunteer on several committees. As a Telefriend volunteer I make weekly calls to individuals with MS who would like to talk to another person with MS. I went through training and 10 years ago I made that first call. He and I are still communicating today. I have found that no two telefriends are alike, and I have had many over the years. Try it — you’ll like it! Beginning Conversations is where a volunteer who has had MS for over 5 years meets with a newly diagnosed individual in an informal setting and shares her/his story, shows the newly diagnosed person all of the ways the Chapter can be a part of their journey with MS, and answers any questions the person has. Try it, (as a volunteer or as a client) — you’ll like it! I am also a Wellness Program volunteer. One “job” is calling and tracking individuals with MS who are engaged in yoga, aquatics, belong to a gym, use a personal trainer, etc.
11 Another “job” I have is with our At-Home Exercise Program. To help you exercise at home safely, a physical therapist or occupational therapist will visit you at home to complete an evaluation and establish an at-home exercise program. If appropriate, the Chapter will help you get a mini-bike that can toni kodner be used to increase en- wellness volunteer durance and strength. I call once a month to sur- Walk MS volunteer vey the use of the mini- telefriend bike, how they feel while using it, and answer any volunteer questions. Since I am a huge proponent of exercise, the next “job” I have is facilitating the Wellness Network. Once a month, we have a qualified speaker give information on a wellness subject. The Wellness Network was established for those individuals with MS who are already exercising, want to start an exercise, learn how to modify different exercises, where to go for exercise, and learn about things that apply to wellness. The calls are informal and questions and comments are encouraged. We learn from each other. It may seem that all of this volunteering takes a lot of my time, but it really doesn’t. I go into the Chapter office once a week in the morning. Everything else is done from home, on my time. You can give as much or as little time as you have. From “dabbing my toe” 10 years ago, I have made many friends, learned more about MS and received so much happiness that I feel guilty. I get so much more than I give! The best part of being a volunteer is passing on my love of volunteering for the MS Society to my family. Try it — you’ll like it! n
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bike ms
brendie’s b-bops get hooked on bike ms
The Boyce family had been living with MS for nearly 20 years before they decided to participate in Bike MS. “Out of the blue, my oldest daughter said to me ‘we should do Bike MS,’” said Stephanie Boyce, whose husband Brendan was diagnosed with MS when he was 33. “I told her you’re nuts, we can’t ride 150 miles.” After looking more into Bike MS, they learned of the 40-mile route options and that there truly was something for everyone, so they registered and Team Brendie’s B-Bops was formed. “For all the years that Brendan has had MS we haven’t done much except for donating,” Stephanie said. “We weren’t really prepared, we just thought about riding in the summer and we did it.” After doing that first ride in 2009, Stephanie was hooked and wanted to do more. “It was the most uplifting thing I had ever done,” Stephanie said. “Everything is so well staffed and the most wonderful people you would ever want to meet are down there riding and volunteering. I decided then the next year I was going to try to make the team bigger
Stephanie boyce and her daughters don’t just ride, they bike ms for brendan.
and ride the entire 150 miles, so I trained really hard.” Stephanie and Brendie’s B-Bops continue to ride for her husband Brendan and his sister who has been living with MS since she was 18. Brendan’s MS began as relapsing remitting but has evolved into progressive MS making the last five years very challenging.
“bike ms was the most uplifting thing I had ever done.” “I can’t get him in and out of bed without a lift,” Stephanie said. “He was good for a lot of years but it’s been tough. But he’s an awfully kind man. He was once a hot-head and now he is a good sport about everything and never complains.” Brendie’s B-Bops is truly a friends and family team including Stephanie’s daughters, some of
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said. “He struggles every single day of his life to do things like lift his hand. So for us to struggle for two days riding bikes is nothing.” The team also means a lot to Brendan.
Brendie’s b-bops epitomizes a friends and family team at bike MS. Stephanie’s friends, children of her friends and even an old classmate of Brendan’s. They also raised nearly $9,000 last year. “It seems like everyone on our team tries to bring in somebody each year,” Stephanie said. “It really is people who are near and dear to our hearts and people who mean a lot to us.” The feeling of crossing that finish line at Bike MS has also grown to mean a lot to Stephanie – especially when her husband can be there.
“He’s very proud of all of us,” Stephanie said. “He tears up when every one of us comes through the finish line.” It also provides a social environment for Brendan, who spends most of his days at home. “He has become closer to a lot of the team members,” Stephanie said. “His friend from college and him have reacquainted. He has gained a lot of social benefit from the team.” So how long will Stephanie continue riding in Bike MS?
“It always brings tears to my eyes – it’s overwhelming to me to see him there,” Stephanie
“I will do Bike MS every year until I can’t.” Stephanie said. “When I can’t ride, I’ll go down and volunteer because I want to be involved. It’s an awesome feeling to have the volunteers’ support and to hear them cheering.” n
newly diagnosed
Fairview Heights, IL
new connections 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. Chapter staff will be in attendance to let you know what we do and how we can help. A threecourse dinner will also be included with this FREE program.
August 2, 6 p.m. Four Points by Sheraton 319 Fountains Parkway Speaker: Barry Singer, MD Neurologist Director The MS Center for Innovations in Care Missouri Baptist Hospital Register at gatewaymssociety.org g Chapter Calendar.
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MS connection: Summer 2012
ask the professional
ms is so unpredictable. What can I do to take control of my ms? By dr. mark tullman
MS is an extremely variable and unpredictable disease, but here are some ways for people with MS and/or their caregivers to take control of the disease. Most people with MS initially experience a relapsing-remitting course, which is characterized by attacks of neurologic dysfunction (often referred to as exacerbations or relapses) interspersed with periods of remission. Although the symptoms from relapses often resolve, approximately 40 percent of exacerbations result in persistent neurologic problems and disability may accumulate over time. Therefore, trying to prevent relapses is very important. Fortunately, there are currently 8 FDA-approved disease-modifying therapies that reduce the risk of relapses and lessen the likelihood of MS getting worse. With so many drugs to choose from, many MS patients have at least several good treatment options, especially early in the course of the disease. Treatment decisions are frequently based on a combination of medication effectiveness, tolerability, and potential side effects. Convenience and patient preference may play a role. The therapies are most effective when taken on a regular basis. Missing doses on a consistent basis increases the likelihood of irreversible disability. Switching therapies is often a good option for patients who have unacceptable medication side effects, difficulty adher-
ing to treatment schedules, or a suboptimal response to treatment. Results for numerous new medications are promising and even more treatments are on the horizon. It is conceivable that by 2013 there will be 3 additional disease-modifying therapies.
dr. mark tullman
A small percentage of infections can Neurologist trigger an MS exac- The MS Center for erbation. Without going overboard, Innovations in Care strategies that minimize the risk of infections should be incorporated. The influenza or flu vaccine is safe for people with MS. Most people with MS should receive the flu shot each year. It is probably best to delay vaccinations for four to six weeks in the setting of a recent MS relapse. It is difficult to treat MS that is slowly getting worse, particularly in the absence of relapses. Although treatment is often focused on symptom management (discussed on the next page), a number of strategies exist - including treatment with medications that suppress the im-
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mune system - to try to prevent or delay the disease from getting worse. Furthermore, treatment of the progressive forms of MS (both secondary and primary progressive MS) is a very active area of research. Participating in a clinical trial testing a new medicine may be an option for some patients. Many people with MS experience symptoms on a daily basis. Some may be disabling, embarrassing, and/or interfere with personal relationships. Common symptoms include fatigue, depression, bowel and bladder dysfunction, pain, stiffness, cognitive problems, weakness, difficulty walking, and sexual dysfunction. Therapies to alleviate the daily symptoms of MS are an important part of patient care as proper identification and treatment often maximizes function, improves quality of life, and increases independence. The recent availability of medications to treat symptoms such as walking difficulty and new strategies to treat MS-related tremor or bladder dysfunction are a welcome advance. Many people with MS never discuss some of their symptoms (e.g. depression, sexual dysfunction, walking difficulty, bowel and bladder dysfunction to name a few) with their healthcare providers.
It is imperative that patients or their caregivers inform their healthcare providers of their most troublesome symptoms, which should be treated before less bothersome symptoms. Successful management usually requires a combination of pharmacologic treatments with nonpharmacologic measures, such as rehabilitation, exercise, or lifestyle and environmental modifications. As an example, I recently saw a patient with rather severe fatigue who improved significantly after she reduced the dose of a medication that was causing drowsiness, started an exercise program, and limited her activities in the afternoon when her fatigue was worse. A healthy lifestyle and nutrition are important for everyone. Research suggests individuals with MS who smoke may be more likely to develop disability. Having MS is another reason not to smoke (or to try to quit if you do smoke). Many different diets are recommended for people with MS with little or no evidence they are of any benefit. I advise patients to limit their saturated fat intake and eat fish several times per week, as well as plenty of fruits, vegetables, whole grains, and beans. These are just some of the ways in which MS patients and/or their caregivers can take control of MS. n
john l. trotter program
st. louis, mo
TOPIC: What Are Kids with MS Telling Us SPEAKER: Emmanuelle L. Waubant, MD, PhD Associate Professor of Neurology University of California - San Francisco
saturday, october 6, 10 a.m.
PROGRAM INCLUDES BRUNCH
Hilton St. Louis Frontenac 1335 South Lindbergh Blvd. St. Louis, MO 63161
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MS connection: Summer 2012
advocacy
you’re in the driver’s seat
The Missouri General Assembly has approved the MS Awareness speciality license plate! Help spread MS awareness and show others that you support the National MS Society by purchasing an MS Missouri license plate! Apply for your license plates now to help us reach our goal.
mov4ms
what this means n Every
plate purchased = $25 directly to the NMSS.
n Increased
awareness about MS.
what you can do
need 200 applicants to start production so apply for your license plate today!
family programs
camp hope
This week-long summer camp is designed 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. 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
“my daughter seemed to come more out of her shell. For her just to forget about serious stuff and be a kid was great.”
n We
to gatewaymssociety.org g Advocate g MO License Plate and fill out the application.
n Go
bowling day in cape girardeau Sunday, June 24, 12:30-3 p.m., West Park Lanes Bowling Alley 354 S. Silver Springs Road, Cape Girardeau, MO Bring your family to an afternoon of bowling. Includes free registration, one hour of bowling, shoe rental and lunch.
July 22-27 Touch of Nature Environmental Center Southern Illinois University 1206 Touch of Nature Road Makanda, Illinois 62958 (near Carbondale) Program Fee: $150 per child includes: meals, overnight lodging, and activities. Call 800-344-4867 option 2 or visit mscamphope.org to register. The deadline is June 19. COUNSELORS ALSO NEEDED. CALL THE CHAPTER IF YOU WANT TO VOLUNTEER.
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st. louis area
ms centers
The National MS Society collaborates with five local MS Centers. Each center specializes in comprehensive and coordinated care of patients with MS. Below is a listing of the five MS Centers and the contact information for making an appointment.
john l. trotter ms center
Barnes Jewish Hospital Center for Advanced Medicine 4921 Parkview Place, Suite 6C, St. Louis MO Clinic: McMillian Bldg., Lower Level 517 S. Euclid Ave., St. Louis MO 63110 http://neuro.wustl.edu/research/mscenter/ Schedule appts: (314) 362-3293 Clinic Neurologists: Dr. Anne Cross, Dr. Becky Parks, Dr. Rob Naismith, Dr. Gregory Wu, Dr. Enrique Alvarez, Dr. Peiqing Qian, Dr. Samer Tabbel Clinic is Tuesdays 8 am- 2pm. Staffed by Kerri Bowes, LMSW of NMSS.
wEst county ms center
1176 Town & Country Commons, Chesterfield MO, 63017 (636) 893-1260 Neurologists: Dr. Barbara Green, Dr. Amy Rauchway Social Worker: Martie Fenger (Tue. & Wed.) Thursdays: Staffed by Kerri Bowes, LMSW of NMSS.
The MS Center for Innovations in care Missouri Baptist Medical Center 3009 North Ballas, Building B, Suite 207B St. Louis MO 63131 (314) 996-7960 info@MSLivingWell.org www.mslivingwell.org Neurologists: Dr. Barry Singer, Dr. Mark Tullman Wednesday mornings staffed by Pat Harris, BSW of NMSS.
slu care
The Physicians of Saint Louis University Multiple Sclerosis Clinic 3660 Vista Ave. Suite 303 St. Louis, MO (314) 977-6159 Schedule appts: (314) 977-4444 www.slu.edu/x23044.xml Neurologist: Dr. Florian Thomas Clinic is Thursday afternoons staffed by Katie MacLean, MSW, LCSW of NMSS.
St. Louis VA Medical Center care 915 N. Grand Blvd. St. Louis, MO 63106 (314) 894-6677 Neurologist: Dr. Florian Thomas www.StLouis.VA.gov/Services/SCI/asp
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MS connection: Summer 2012
muckruckus ms
motley muckers team up for number of reasons - same cause Members of the Motley Muckers, one of the largest MuckRuckus MS teams, all have their own reasons getting dirty for MS at MuckRuckus MS. Team captain Jennifer Phillips does it for her husband Brian. “It is my privilege to do the MuckRuckus in honor of my husband and others affected by MS,” Jennifer said. “He has had MS for 14 years and never complains and never stops fighting back. He is my inspiration every day and I can’t wait to get to the end of the course and give him a big muddy hug!” Nicole Otto does it for Jennifer and her family. “I signed up because I have seen the challenges Jennifer and her family have endured and wanted to help in some way,” Nicole said. “MS can be an ugly and scary disease. If in some small way, running this race helps, then we have made a step in the right direction.” Denice Griner continues to grind through the course and get muddy because of some kind words of a stranger. “I signed up again this year because while running on the course last year, I was personally thanked by a woman with MS for supporting the cause,” Denice said. “I feel like I’m actually making a small difference, rather than partici-
“as a single mommy who fears waking up one day not being able to move, I run because I can. i need a cure to be found and everyone to know about ms.” pating in an event for my own fitness goal.” Meredith Canterberry isn’t afraid to get dirty because of her friends. “I participate in MuckRuckus MS for three of my dear friends,” she said. “They are all mothers struggling with everyday life situations like raising kids, being forced into early retirement, just everyday life hardships and I am sick of them missing out on living life. Some days they can’t get out of bed, they can’t sleep and are not able to watch their children accept awards at school, play sports or just be there for them. I just want to help in any way that I can and hope and pray every day for a cure.” Carrie Williams, who was diagnosed January 12 this year, does MuckRuckus for herself – and because she can. “As a single mommy who fears waking up one day and not being able to move, I run because I can,” Carrie said. “I need a cure to be found and everyone to know about MS.”
gatewaymssociety.org | 1-800-344-4867
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the motley muckers had quite an adventure - and just a great time at Muckruckus ms in may. They also all participate because it’s a heck of a good time. “It’s fun, exciting, and something that everyone should experience at least once,” Jennifer said. “You would be surprised at how excited people get at the prospect of participating. It’s like everyone wants to let go of their adult responsibilities and go play in the mud for an afternoon.” MuckRuckus also provides an amazing individual challenge – both physically and mentally. “The MuckRuckus MS experience is unlike anything I’ve done before,” Jennifer said. “It’s not just about running, but testing your stamina, balance, willingness to scale heights, burrow into small spaces, claw your way to the top of a mudslide, or jump off tall platforms. I was surprised to find that even though I was able to do nearly everything physically, it was usually nerves that would give me pause when I got to a new obstacle. Luckily I had a wonderful team of women to support me (and sometime boost me) when I needed it. MuckRuckus MS is a chance to step outside your comfort zone and try things you may not normally do and reap a HUGE adrenaline rush as a reward.”
But at the core of MuckRuckus MS is the mission – getting closer to a world free of MS and making a difference in the lives of those affected by it. “Participating in MuckRuckus MS has been incredible,” Jennifer said. “It underscores the amazing support system Brian and I have of people who are by our side to fight MS and raise money for a cure. I am humbled by and grateful to the 22 women on the team who have committed time to this event and the cause behind it. We are united by the commitment to come out, have fun, get muddy, and support a deserving cause.” For people who live with MS and do MuckRuckus MS, participating in the event is a statement. “Having MS and doing MuckRuckus MS means that MS doesn’t control me and never will,” Carrie said. “I will fight for my mobility and every chance I get to move, I’ll take it. I am so blessed to have a load of family and friends that love and support me.” n
20 talk ms
leader gets as much as she gives When Anne Konieczny’s son Alexander was diagnosed with MS a week before his 18th birthday, she didn’t know what to do. “It took me a while to get over the shock of the diagnosis,” Anne said. Anne wanted to learn more about the disease and the National MS Society and also wanted to find some support. Without a Talk MS group in her area of Washington, MO, Anne took matters into her own hands and volunteered to start and lead a Talk MS group. “It was mainly because I was seeking support,” Anne said. “I had some time to give something back and do something for the National MS Society. I felt like being a Talk MS group leader would be a good venue because there was a need here, but it’s also for me.” The Washington Talk MS group meets monthly and usually has about 10 people in the meeting, though the mailing list includes 30. Anne arranges to have speakers at the group including a social worker, a pharmaceutical company representative, an MS nurse and representatives from the Chapter. When the group doesn’t have any guest speakers, the members still enjoy just getting to-
MS connection: Summer 2012
“you can read all this material on your own, but you learn so much more when you have a conversation or learn from someone else’s experience.” gether to support each other. “We really enjoy just meeting like this and talking about mostly MS-related topics,” Anne said. “I let the discussion go where it goes and try to guide or direct it a little bit. It’s really a positive group. We get together and bring food and focus on giving people information and encouragement and discuss what people are interested in.” Anne has learned quite a bit in her two years of being a Talk MS group leader and gets just as much if not more from the group as she puts into it. “You can read all this material on your own, but you learn so much more when you have a conversation or learn from someone else’s experience,” Anne said. “It also makes me feel like I’m not alone. It can be overwhelming. It may be easier if I had MS, but for me it’s my child who has MS which is really tough. The group keeps me sane. It shows me that other people are OK, they have a good quality of life and are positive people. They appreciate what life has to offer for them and they contribute – just like any other person. That helps me deal with the thought of my child having MS.” n
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gatewaymssociety.org | 1-800-344-4867
board of trustees
board member remembered through gift to Chapter
It has been almost a year since the sudden passing of our friend and long-time board member Rick Jaudes, but his impact on the National MS Society continues to be felt. The Society was recently reminded of the depth of Rick’s commitment when his wife Mary Kay presented a $50,000 check from his estate to the Gateway Area Chapter. When he passed away suddenly in June of 2011, Rick was Chair of Thompson Coburn’s Labor and Employment Law Section and Co-Chair of the firm’s Human Resources Law Department. He was known for the strong principles he adhered to throughout his life.
While Rick did not have a relative with MS, he had extensive personal experience with the disease. He served on various committees throughout his 18 year tenure on the board and consistently provided sound advice and assistance to the Chapter on human resource guidelines and issues. In Rick’s own words taken from his goals handwritten in January of 2011: “Be a son of God, of my Mom and Dad, a good husband, father, papa, brother, partner, director, and friend. I open my arms to the future – the best is yet to come!” Rick, we thank you for your friendship, counsel and the fine example you presented for us all.
Rick jaudes was a dedicated member of the board of trustees since 1993. Tributes and memorial gifts are great ways to honor or remember a loved one while supporting a cause you care about. If you are considering a gift to the Gateway Area Chapter, or would like information about including the National MS Society in your will or estate plans, please contact Alesia Hanners, Director of Individual Giving, at 314.446.4177.
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MS connection: Summer 2012
learn about ms midwest regional lending library Check out the new Midwest Regional Lending Library. Now offering an expanded selection of up-to-date items that are available for a three-week checkout, the library is open and waiting for your orders.
research
on the road
MS specialists will discuss: • Research and new therapies for MS • New data on disease modifying medication FREE (INCLUDES BRUNCH) Register at gatewaymssociety.org g Chapter Calendar.
carbondale, IL june 23, 10 a.m. - noon
“Most of the items
We have a great se- i ordered were on lection of books on topics such as man- yoga and doing yoga aging symptoms has changed my in MS and talking life.” with family members about MS. Listen to a record- “MS is what you ed teleconference make of it. It taught from our Midwest Regional Telecon- me to be more innoference Series or vative.” watch a DVD to learn about seated exercises. Borrowing a book, DVD, or CD through the library is free and easy. Up to 2 items at a time can be requested online or by calling the Information Resource Center. Online: www.gatewaymssociety.org g Learn About MS g Lending Library g Midwest Regional Lending Library. Phone: 1-800-344-4867, option 1
Holiday Inn Conference Center 2300 Reed Station Parkway Speaker: Gregory Wu, MD, PhD Neurologist, Division of MS Department of Neurology John, L. Trotter MS Center Washington University School of Medicine
Cape girardeau, MO august 11, 10 a.m. - noon
Cape Career & Technology Center 1080 Silver Springs Road Speaker: Enrique Alvarez, MD, PhD Neurologist John L. Trotter MS Center Washington University School of Medicine
columbia, MO
september 22, 10 a.m. - noon Hilton Garden Inn 3300 Vandiver Drive Speaker: Mark Tullmann, MD Neurologist The MS Center for Innovations in Care Missouri Baptist Medical Center
Pa i d A d v e r t i s e m e n t
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: Barbara Green, MD Mary-Kay Fink, MSN June 28 at 6:00pm Canyon Cafe 1707 S. Lindbergh Rd St. Louis, MO
August 28 at 6:00pm Robust Cafe Wine Bar 227 W. Lockwood Webster Groves, MO
Featured Specialist: Heather Popham, NP Barbara Green, MD Sept. 6 at 6:30pm Lottawatta Creek 311 Salem Place Fairview Heights, IL
Sept. 30 at 11:30am Trattoria Branica 10411 Clayton Rd St. Louis, MO
Tell or bring a friend! Accessible to people with disabilities. Light meal served. Parking will be validated. Space is limited. Please RSVP by calling 1-800-973-0362
Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080 © 2012 Novartis 4/12
Pa i d A d v e r t i s e m e n t
T-XMG-1137413
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MS connection: Summer 2012
talk ms groups
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.
MISSOURI Camdenton
3rd Wednesday Camden County Library 4:30 p.m. 99 Rodeo Road, Camdenton, MO 65020
St. Francis Health & Wellness Center Healing Arts Building, Conference Room 150 S. Auburn, Cape Girardeau, MO 63703 Rusk Rehabilitation Center 3rd Wednesday Columbia 315 Business Loop 70 West 6 p.m. Columbia, MO 65203 Disability Resource Association Crystal City/ 2nd Tuesday 420B S. Truman Bl., Crystal City, MO Festus 1 p.m. 63019 1st Monday Coca-Cola Bottling, Meeting Room Jefferson City 6 p.m. 605 Washington, Jefferson City, MO 65109 2nd Saturday Little Dixie Regional Libraries Moberly 10:30 a.m. 111 North 4th Street, Moberly, MO 65270 Ralls County Health Department Building 1st Tuesday 405 W. 1st Street, New London, MO New London 7 p.m. 63459 July 8, 2 p.m. Conference Room A/B Barnes-Jewish O’Fallon October 14, 2 Hospital, St. Peters, MO 63376 p.m. 3rd Sunday Hardee’s Restaurant, 501 Mid Rivers Mall St. Charles 3 p.m. Dr., St. Peters, MO 63376 3rd Monday St. Peter’s United Church of Christ, Washington 6 p.m. 20 East 5th St., Washington, MO 63090 Cape Girardeau
West Plains
3rd Saturday 10 a.m.
Christy Bays, cell (573) 480-7932 cm2owl@hotmail.com Sharon (573) 332-8148 Rebecca Dykhouse, LSW (573) 817-4697, rebecca.dykhouse@healthsouth.com Marlene (636) 464-2533 Sharon webradleys@yahoo.com Rebekah Walters (573) 464-2433 bekagrace10@gmail.com Lynelle David (660) 833-3175 Debby (573) 267-3365 mlrdsr@att.net debtalkms@yahoo.com Jim (314) 602-4578 Anne (636) 359-6037
3rd Wednesday Ozark Medical Ctr. Shaw Medical Bldg. 2nd Charline (417) 469-1068 5 p.m. Fl. 909 Kentucky St., West Plains, MO 65775 Sally (417) 469-4842
ST. LOUIS METRO Affton Generation OptiMiStic for people in their 20s, 30s & 40s West County Prayer & Health
3rd Wednesday Weber Road Library 7 p.m. 4444 Weber Rd, St. Louis, MO 63123
Linda (314) 544-5623
1st Saturday 10 a.m.
NMSS Office Gateway Area Chapter Michelle (636) 447-5407 1867 Lackland Hill Pkwy, St. Louis, MO 63146
April 25, May 30, June 27 6:30-8 p.m.
Sachs Library 16400 Burkhardt Place Chesterfield, MO 63017
Rose Marie sqsace@sbcglobal.net
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gatewaymssociety.org | 1-800-344-4867
talk ms groups ILLINOIS Alton/River Bend Belleville/ O’Fallon Central Illinois S’myelin Gang of Litchfield Metro East Southern Illinois
3rd Tuesday 7-9 p.m. 2nd Sunday 2:30 p.m. 4th Monday 7 p.m. 4th Tuesday 6:30 p.m. June 27, 7 p.m. Aug. 7, 7 p.m. 2nd Monday 6 p.m.
The United Presbyterian Church, 2550 Rock Hill Rd., Wood River, IL 62095 First United Methodist Church 504 East Highway 50, O’Fallon, IL 62269 Richland Memorial Hospital 800 East Locust St., Olney IL 62450 Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056 LINC, Inc. #1 Emerald Terrace, Swansea, IL 62226 Heartland Regional-Medical Center Classroom #1, 3333 West DeYoung, Marion, IL 62959
Lisa (618) 258-0615 Amy (618) 235-4226 Tony (618) 302-1333 tmadmz@frontier.com Meredith (217) 556-4418 Diane (618) 235-8823 Earhart500@aol.com Robert (618) 983-0321
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 David C. Pratt Cancer Center MS Fun, August 7 Mercy Hospital Friends & Food 6 p.m. 607 S. New Ballas Rd., St. Louis, MO Potluck 63147 Veterans Admin. Medical Center Veterans with 2nd Wednesday 1 Jefferson Barracks Dr., St. Louis, MO MS 10 a.m. 63125 David C. Pratt Cancer Center CarePartner 1st Tuesday Mercy Hospital and Family 6:15 p.m. 607 S. New Ballas Rd., St. Louis, MO Group 63147
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.stickler@nmss.org
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MS connection: Summer 2012
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.
The Chapter offers financial assistance for attendance and transportation to therapeutic recreation programs. 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. 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
therapeutic recreation sites St. Louis Adiva Dance Center
tai chi
Address 943 South Kirkwood Road Kirkwood, MO 63122 Bridgeton Community 4201 Fee Fee Road Center Bridgeton, MO 63044 Carondelet Park Rec 930 Holly Hills Ave Plex St. Louis MO 63111 Center of Clayton 50 Gay Avenue Clayton , MO 63105 JCC 2 Millstone Campus Drive St. Louis, MO 63146 Downtown YMCA 1528 Locust Street 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 Emerson Family YMCA 3390 Pershall Road St. Louis, MO 63135 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
Yoga
zumba
Contact Theresa 314-822-7113 Cole 314-739-5599 Shannon 314-768-9622 Diane 314-353-4960 Sheena 314-442-3495 314-436-1177 636-598-5544 314-439-9622 Georgia/Chris 314-521-1822 Christina 636-942-3000 314-965-9622 636-699-8508
activities offered
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gatewaymssociety.org | 1-800-344-4867
therapeutic recreation sites St. Louis cont. Mid-County YMCA
Address 1900 Urban Drive St. Louis, MO 63144 Olivette Community 9723 Grandview Drive Center St. Louis, MO 63132 Mercy Medical Building 615 S. New Ballas Rd., St. Louis, MO, 63141 Show Me Aquatics 2085 Bluestone Drive 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 3456 Harry S. Truman Blvd. YMCA St. Charles, MO 63301 The Cancer Support 1058 Old Des Peres Rd Community St. Louis, MO 63131 The Lodge in Des Peres 1050 Des Peres Road St. Louis, MO 63131 The Pointe at Ballwin 1 Ballwin Commons Circle Commons Ballwin, MO 63021 Tri-County Family 1105 E South Service Rd YMCA Wentzville, MO 63385 Riverchase 990 Horan Dr 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 Yoga Saint Louis 3305 Jamieson Ave. St. Louis, MO 63139 Z Power Fitness 233 Lamp & Lantern Village Town & Country, MO 63017
aquatics pilates
tai chi
Contact Sandi 314-962-9450 314-781-9020 800-344-4867 Linda 314-729-0181 Carolyn 636-896-0999 Rich 314-644-3100 314-843-6703
activities offered
636-928-1928 Kathryn 314-238-2000 314-221-8454 Leslie or Adam 636-227-8950 636-332-5574 Phyllis 618-482-9140 Ann 636-239-5704 314-962-9622 Trudy C 314-746-1500 Abby 636-207-3000 636-532-3100 Bruce 314-645-9785 Nancy 314-221-8454
Yoga
zumba
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MS connection: Summer 2012
therapeutic recreation sites Mid-Missouri Columbia Activity and Rec. Center Elm Street Yoga
Address 1701 W. Ash Street Columbia, MO 65203 904 Elm St. Suite 210. Columbia, MO 65201 Jefferson City YMCA 424 Stadium Boulevard Jefferson City, MO 65101 Mexico Family YMCA 1127 Adams Street Mexico, MO 65265 Pilates & Yoga at Chapel 2010 Chapel Plaza Ct. Suite A Hill Columbia, MO 65203 Illinois Address Edwardsville YMCA 1200 Esic Drive Edwardsville, IL 62025 Jerseyville Wellness 400 Maple Summit Rd Center Jerseyville, IL. 62052 John A. Logan College 700 Logan College Road Carterville, IL 62918 Maryville YMCA 1 Town Center Drive Maryville, IL 62062 Mascoutah Senior 227 N. Market Center Mascoutah, IL 62258
Contact Janel 573-874-7460 Linda 573-441-8566 Erica 573-761-9021 Consuelo 573-581-1540 573-446-0224
activities offered
Contact Pam 618-656-0436 Jennifer 618-498-3500 Chris 618-985-2828 Julie 618-346-5600 618-566-8758
activities offered
O’Fallon Community YMCA
284 North 7 Hills Road O’Fallon, IL 62269
618-628-7701
One-O-One Yoga
101 S Graham Ave # 1 Carbondale, IL 62901 18 South High Street Belleville, IL 62220 Address
Sarah 618-457-8186 Sarah 618-236-9642 Contact
301 South 5th Street Poplar Bluff, MO 63901 1920 Whitener Street Cape Girardeau, MO 63701 2620 N. Westwood Blvd. Poplar Bluff, MO 63901 Court Square West Plains, MO 65775 422 West Pine Street Poplar Bluff, MO 63901
Mandi 573-686-8009 Pat 573-335-4040 Mindy 573-686-5985 Vicki 417-293-1184 Christi 573-785-3780
Sukha Yoga Center Southeast Missouri Black River Coliseum Cape Girardeau Municipal Pool PARC Fitness Center Simply Yoga Xtreme Gymnastics Cheer and Dance
aquatics pilates
tai chi
Yoga
activities offered
zumba
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gatewaymssociety.org | 1-800-344-4867
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. Upcoming topics include: June 21, 7-8 p.m. Beat the Heat: Staying Active in Summer July 26, 7-8 p.m.
Cognifitness and MS
August 23, 7-8 p.m.
Keep Moving: Enabling Mobility and MS
September 27, 7-8 p.m. Tai Chi 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.
dial. listen. learn. Midwest Teleconference Series Mark your calendars on every second Monday of the month for the Midwest Teleconference Series. The series topics from March through MidwestJune are: Teleconference Series
Give Yourself a Hand: Tools for Everyday Life Speaker: Merin Salsbury, PT Midwest Date/Time: June 11, 7-8 Teleconference p.m. Series
The Cycle of MS Symptoms and their Effect on Bowel and Bladder Midwest Speakers: Colleen Berding, RN, MSCN and Teleconference Angela Tabaka, NP, MSCN Series Date/Time: July 9, 7-8 p.m.
Spasticity, Rolling Your Motion
Speaker: Dr. Arthur Itkin, Neurologist Date/Time: August 13, 7-8 p.m.
MS - What A Pain
Speaker: Heidi Maloni, PhD, ANP-BC, MSCN Date/Time: September 10, 7-8 p.m.
chapter open houses Do you want to learn more about the National MS Society or get more involved? Join us for a one hour open house, hear stories about ways the Chapter helps people in our community, and learn how you can join the movement!
First Thursday of every month Noon and 6 p.m. 1867 Lackland Hill Parkway St. Louis, MO 63146 RSVP at gatewaymssociety.org g Chapter Calendar, or call 800-344-4867.
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MS connection: Summer 2012
chapter calendar Date
Available via Available via live-stream telephone in this area. pg. st. louis illinois southern midSe# mETRO illinois Missouri Missouri 29 32
P Program located
June 21
program/ event Teleconference CarePartner Teleconference Wellness Network
June 23 June 24
Research MS Town Hall Meeting
22 5
June 24
16
July 9 July 22-27 July 26 August 2 August 11 August 13 August 23
Family Evening Cape Girardeau Teleconference Camp Hope Wellness Network New Connections Research MS Teleconference Wellness Network
29 16 29 13 22 29 29
Sept. 10
Teleconference
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Sept. 22
Research MS
22
Sept. 27
Wellness Network
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Oct. 6
John L. Trotter Research Program
15
June 11 June 18
29 P P P
P P P
P P
share what you know ms 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.
gatewaymssociety.org | 1-800-344-4867
program registration
[ [ [ [ [ [ [ [ [ [ [ [ [ [ [ [ [
] Tools for Everyday Life Teleconference June 11 COST: FREE PROGRAM ] Carepartner Tele-chat June 18 COST: FREE PROGRAM ] Wellness Network Beat the Heat: Staying Active in Summer June 21 COST: FREE PROGRAM ] Research MS, Carbondale, IL June 23 COST: FREE PROGRAM ] Town Hall Meeting, West Plains, MO June 24 COST: FREE PROGRAM ] Family Evening at Cape Girardeau, MO June 24 COST: FREE PROGRAM ] Teleconference July 9 COST: FREE PROGRAM ] Camp Hope, Makanda, IL July 22-27 COST: $150/camper ] Wellness Network July 26 COST: FREE PROGRAM ] New Connections, Fairview Heights, IL August 2 COST: FREE PROGRAM ] Research MS, Cape Girardeau, MO August 11 COST: FREE PROGRAM ] Teleconference August 13 COST: FREE PROGRAM ] Wellness Network August 23 COST: FREE PROGRAM ] Teleconference September 10 COST: FREE PROGRAM ] Research MS, Columbia, MO September 22 COST: FREE PROGRAM ] Wellness Network September 27 COST: FREE PROGRAM ] John L Trotter Research Program October 6 COST: FREE PROGRAM
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 © 2012 A quarterly magazine published by the National Multiple Sclerosis Society, Gateway Area Chapter. Chapter President • Phyllis Robsham Writers • Pam Bascio • Dr. Linda Buchwald • Joe Cavato • Toni Kodner • Kathi Taylor • Dr. Mark Tullman
31 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 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” to choose the program you would like to attend. 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.
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Permit No. 3914 St. Louis, MO
Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146
carepartner programs
carepartner & family group This group covers a series of topics important to carepartners or to anyone who provides care for a loved one with MS. David C. Pratt Cancer Center Mercy Center 607 South New Ballas Rd. St. Louis, MO 63141 First Tuesday of the month, 6:15 p.m. Next Meeting is August 7. Topic: Talking About the Future RSVP required. Contact Stacey at the Chapter at 800-344-4867. Group is facilitated by Karen Tripp, Marriage & Family Counselor.
MS together
This couples social group provides an informal social opportunity to meet and talk. Events are organized by the couples themselves, including potlucks and ballgames. Expect to actively participate in planning and organizing, as well as having fun! Meets quarterly, location changes but is generally in the St. Louis area. If interested email Joe Salacki at jsalacki2@gmail.com.
telephone group
The Carepartner Tele-chat program connects carepartners of people living with MS to other carepartners through a free call-in chat service where people can share time, interests, coping techniques, experiences and information. RSVP required at 800-344-4867. Facilitated by Karen Tripp, Marriage & Family Counselor. It meets June 18 at 7 p.m.