The road to a better couples relationship is much the same for everyone. We all want mutual respect, adoration, healthy communication and love. Couples coping with MS are no different. However MS can create roadblocks which make the path to a better relationship more difficult. Yes, there can definitely be physical and financial hurdles from MS but these are not the biggest threats to a couple’s relationship. The largest threats come from misconceptions or roadblocks which can deceive a couple into believing a relationship cannot move forward. Don’t let these roadblocks side swipe your couple relationship.

ROADBLOCK #1 “They’ll never understand.” When a person undergoes a difficulty such as divorce, grief, or a serious diagnosis like MS, an isolation occurs. It’s so difficult to process what you are going through that it feels impossible for anyone else to understand.

The truth is, whether you are the person living with MS or the carepartner, no one can fully understand what you are going through but you. But everyone can understand more. Here’s the question: “Is your relationship important enough to work on building a deeper level of understanding?”

ROADBLOCK #2 “They are only here because of the MS.” Everyone wants their loved one to be with them because they love and cherish them. MS brings fears. Carepartners may fear that their loved one is only with them so they have someone to care for them. People with MS may fear that their loved one is only

SUMMER 2014 MID AMERICA CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE

06DOC TALK - MS AND THE FAMILY

07VOLUNTEER HAS DONE IT ALL OVER THREE DECADES

12-13UPCOMING PROGRAMS

14BIKE MS TEAM JUST WANTS TO HAVE FUN

CONTINUES ON PG 2

TIPS FOR CAREPARTNERS

ROAD TO A BETTER RELATIONSHIP: TACKLING MS RELATED ROADBLOCKS

KAREN TRIPP, MS LMFT MARRIAGE AND FAMILY THERAPIST

2 MS CONNECTION: SUMMER 2014

Mid America Chapter 7611 State Line Rd., Ste. 100 Kansas City, MO 64114 1-800-344-4867

Chairman: David Dickey Interim Chapter President: Maureen Reeder

© 2014 National Multiple Sclerosis Society, Mid America Chapter

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

COVER STORY CONT.with them out of guilt. Finding consistent and persistent ways to acknowledge these fears and reaffirm the relationship is vitally important in any carepartner relationship.

ROADBLOCK #3 “How can I expect anything more?” Partners in a healthy relationship ask for more all the time. “I want more time alone.” “I want more say over the finances.” “I want more help with chores.” Wanting more affection, respect, sensitivity, or conversation are common requests, but with MS, there are many things which will not change making it easy to believe nothing can change- even your relationship. But, change is a constant in every relationship. So, if you are not working to move closer, you might drift apart. Load your relationship up with hope and positive expectations so you can see it thrive.

A couples relationship filled with roadblocks looks like this:

talk less> share less> expect less> want less> receive less.

Some couples are able to address these roadblocks head on and move into a more fulfilling relationship. Yet, many couples need help through couples counseling. Too often couples counseling is viewed as an avenue of last resort needed only in a crisis. Actually, couples counseling is excellent for helping couples to side step these roadblocks and learn to thrive. Here are some suggestions for selecting a couples counselor.

1. Select a counselor experienced in working with couples together in session. Couples work is a specialty not all counselors have acquired.

2. Attend one session to decide if this is the counselor for you. Expect at the initial session to be told the counselor’s game plan or framework for how they will help your marriage.

3. Many insurances will not cover counseling services. The MS Society may provide limited financial assistance if needed.

You can do this. You can have a better relationship. n

3MSMIDAMERICA.ORG | 1-800-344-4867

BY SHATOYA BLAND

I am a woman, mother, wife, sister, daughter, Soror (Phi Nu Kappa), volunteer, and more recently; I am a person living with Multiple Sclerosis (MS). On January 14, 2014, a doctor diagnosed me with MS. Ironically, telling my family felt scarier than sitting alone in the room with the doctor looking at my MRI and seeing my new reality. However, because my family had also been so involved with the National MS Society, telling them was easier than I thought.

This is my journey.

In early 2008, I returned home to Kansas City. It was important to me to continue my service in the community. I found out about the National MS Society and assisted with the Walk MS in 2008. I have been a volunteer ever since, helping with Bike MS, Traveling Turkeys, and the Midwest Teleconference. I have always felt vital there. It is a place full of people I call friends; professionals who are compassionate. For me, volunteering there has been honorable and educational. I have learned from the staff and from those who live with MS.

In 2012, I experienced a debilitating condition in my legs which was sudden and scary. After multiple doctors and several unclear

explanations for what was happening to me, I was left with few answers. Even after I could walk alone and feel “normal”, I still felt unsatisfied with so many unknowns. I changed every one of my doctors. I believe this was the best decision of my life. My new medical team made assertive efforts to find answers, which led to my diagnosis in 2014.

My children (Dayna-15, Staci-Christopher-14, and Sha’Riya-11) are my heroes. They are fearless. They are interested in what I have to do to get better. My sons walk me to work (less than a minute from home) in the mornings and return in the evenings to make sure I am safe, as my legs are very weak. My wife, Sharron, keeps me encouraged to keep smiling and push on, especially on days I feel overwhelmed. The Mid America MS office staff have become an unexpected and greatly appreciated extended family since the onset of my symptoms.

I am forever grateful for the ordered steps in my life, embracing the sunshine and the rain. After years of being a volunteer involved in the efforts to find a cure, I transitioned to a volunteer who also needs a cure. It is amazing to make a difference for others and myself. My journey continues. n

SHATOYA BLAND

LIVING WITH MS

A VOLUNTEER’S JOURNEY

4 MS CONNECTION: SUMMER 2014

CONNECTIONS

A SAFE PLACE TO LANDVolunteers are the backbone of the National MS Society. But what motivates people to rise as volunteer leaders in their communities? What encourages them to encourage others? For Karen Strawder of Wichita, KS, people living with MS need a “safe place to land”.

The group environment is rich in diversity, yet people feel understood because someone in the group has already been through it. No detailed background information necessary.

MS is not a stranger to Karen’s family. Karen, her dad, and grandfather were all diagnosed with MS. In fact, her family has been leading support groups through their church before being asked to join forces with the MS Society.

“You do this because your heart is in it, because you want to help,” Karen said. “You want people to fight the isolation and know that they are not alone. We provide a safe place to land to anyone living with MS, including partners and family members. It is difficult to face MS alone and our group offers strength and a sense of belonging in the face of the unknown.” n

GROUP NAME LOCATION CONTACTHope From Home MS Group

Telephone Karen 402-486-1885

SE KS Connec-tion Group

Telephone Sue: 620-205-7926, Eileen: 620-325-3668

KANSAS EASTManhattan Area Self-Help Group

Manhattan, KS

Jennifer: 913-980-5366

Positive Living Topeka, KS Merica: 785-273-2173

Sabetha Self-Help Group

Sabetha, KS Debbie: 785-284-2612, JoAnn: 785-736-2730

Brown County MS Connect

Hiawatha, KS

Jennifer: 785-285-0953, Melinda: 785-741-3035

KANSAS CENTRALSalina Self-Help Group

Salina, KS Susan: 785-823-1954

Life’s Journey McPherson, KS

Tim: 316-804-4332

Butler County MS Support Group

El Dorado, KS

Janice: 316-320-9025

Asbury MS Group

Wichita, KS Karen: 316-942-5919

HuSHMS Hutchinson, KS

Ruth: 620-662-3584

KANSAS WESTGreat Bend Self-Help Group

Great Bend, KS

Marian: 620-639-4500

THERE IS A GROUP NEAR YOU There are 40 Connection Groups active within the Chapter. Call 800-344-4867 or go to msmidamerica.org to find one near you. Or you can start your own group.

5MSMIDAMERICA.ORG | 1-800-344-4867

KC METROBlue Springs Self-Help Group

Blue Springs, MO

Dixie: 816-229-2851

Johnson County Heroes

Shawnee Mission,KS

Sharon: 913-631-3495

20s & 30s MS Connection

Leawood, KS Jennifer: 913-339-8839

Northland MS Connection

Kansas City, MO

Todd: 831-578-4440

Southside Connection

Kansas City, MO

Bob: 816-807-0599, Barney: 913-663-2124, Ray: 913-669-9117

MISSOURI CENTRALCass County Self-Help Group

Belton, MO Jean: 816-779-6933

Sedalia Self-Help Group

Sedalia, MO Karen: 660-827-1112, Reva: 660-747-3870

Bates County Self-Help Group

Butler, MO Mary: 660-679-5749, Cheryl: 660-200-7046

MISSOURI NORTHWESTChillicothe MS Connection

Chillicothe, MO

Stacy: 660-646-1303

Support Positive St. Joseph, MO

Nancy: 816-223-5607

Northwest Missouri Self-Help Group

Maryville, MO

Cindy: 660-562-2754

MISSOURI SOUTHWESTExpress MS Branson,

MOJennifer: 417-593-0236, Tenya: 417-559-6075

We Connect Springfield, MO

Mary: 417-895-8228, Heather: 417-887-0170

Joplin MS Con-nection

Joplin, MO Kathy: 214-738-6855, Mark: 417-673-5570

EASTERN NEBRASKA/WESTERN IOWACouncil Bluffs MS Group

Council Bluffs, IA

Jerry: 712-366-9569, Donna: 712-642-4711

Beatrice MS Group

Beatrice, NE Emmett: 402-228-3585

Columbus MS Group

Columbus, NE

Susan: 402-910-8414

Lincoln MS Fellowship Group

Lincoln, NE Karen: 402-486-1885, Linda: 402-202-9820

NW Lincoln MS Connection Group

Lincoln, NE Ruth: 402-261-8050

Positively Moving Forward

Omaha, NE Heather: 402-517-0339

NEBRASKA CENTRALGrand Island MS Support Group

Grand Is-land, NE

Jayne: 308-382-1883, Dixie: 402-834-0075

Hastings Self-Help Group

Hastings, NE

Amber: 402-834-0808

Lexington Area MS Self-Help Group

Lexington, NE

Anita: 308-324-4406, or Marcia: 308-324-5082

NEBRASKA WESTMcCook MS Self-Help Group

McCook, NE

Joann : 308-345-6816, John: 308-278-2165

North Platte Area MS Support Group

North Plate, NE

Alicia: 308-520-0351, Kathy: 308-534-3548

Panhandle MS Support Group

Scottsbluff, NE

Beth: 308-632-0918, Janice: 308-783-2438

Ogallala MS Connection Group

Ogallala, NE Judy: 308-298-8188

BY PATRICK CAFFREY, PHD

To facilitate harmony in the family the following steps are recommended:

•POKE FUN AT YOURSELF: When the person with the disability pokes fun at himself or herself, it has the effect of easing the tension. It lets your family know that they can relax around you knowing that you’re not highly sensitive and as a result they don’t have to “walk on eggshells.”

•WORK OUT AN ARRANGEMENT: This is directed specifically at the individual with a disability and his/her close network of family and friends. The arrangement to “work out” specifically relates to the timing of when to ask for help. Let them know that you will ask for help when you need it. Ask them to allow you first, to seek the solution to a problem or find your technique prior to them providing assistance. This allows the person with the disability valuable learning time to eventually arrive at a specific technique that works well for him or her.

•ASSUAGE PARENTAL GUILT: Sometimes parents of children, especially young children, experience unpleasant feelings of guilt because they are not able to interact in the physical way they would like to with their children such as gentle wrestling, rolling around on the floor, throwing the child skyward, playing ball the yard, etc. This also may involve simple things such as carrying a

sleeping child into the house from the car.

For some parents, the disability prevents them from interacting with their children in these ways. The young child learns to perform certain tasks such as tying his or her shoe, however, oftentimes well ahead of same age peers. For the parent with the disability it becomes apparent slowly that their child is becoming self-reliant and resourceful at a rather tender age, out of necessity. While parental guilt is difficult to cope with, this outcome helps soothe parental guilt. These young people also realize, early on, that we live in an imperfect world and as a result they become more accepting of others who are different.

• IDENTIFY: Recognize the challenges and then look for solutions together as a family.

•COMMUNICATE: Talk about your thoughts and feelings and encourage other family members to do so, too. (From Elise Feuerstein Karras, LMSW, CSW-G, ACSW. Ms. Karras ,1998, 2009 Ceridian Corporation) n

6 docTALK LIVING WITH MS

MS & THE FAMILY

DR. PATRICK CAFFREY, PH.D. IS A PSYCHOLOGIST IN PRIVATE PRACTICE AND A MEMBER OF THE CLINICAL ADVISORY BOARD FOR THE MID AMERICA CHAPTER OF THE MS SOCIETY.

7MSMIDAMERICA.ORG | 1-800-344-4867

Jeff Peier has worked with unflagging energy and enthusiasm to end MS for 30 years as a volunteer with the National Multiple Sclerosis Society. He has done every task from working at rest stops to walking in our Walk MS event to loading trucks on our Bike MS event.

He is unfailingly positive and provides solid, consistent leadership. He is supportive and encouraging of other volunteers and a terrific mentor to staff. Jeff has true concern for those affected by MS, a genuine desire to make an impact on this devastating disease and a real commitment for the MS cause that has spanned decades.

Jeff was recently awarded the 2013 RA Jiggs Nelson Quality of Life Award from the Wichita (KS) Medical Research Foundation for his work with individuals living with MS and the Mid America Chapter.

In addition to his extensive work with the MS Society and his work as an attorney with Klenda Austerman, Jeff is also active in other community organizations such as Fort Hays State University and the Wichita Aero Club. There is much more that could be written about Jeff’s commitment and involvement but suffice to say, he is an amazing and dedicated volunteer and we are so lucky to have him as a partner in the fight against MS. n

VOLUNTEER

VOLUNTEER HAS DONE IT ALL OVER THREE DECADES

VOLUNTEER JEFF PEIER HAS HELD A VARIETY OF ROLES IN HIS 30 YEARS OF VOLUNTEERING FOR THE NATIONAL MS SOCIETY.

Jeff Peier has done a little bit of everything in his three decades of volunteering as he has held a variety of local, state, regional and national roles with our organization:

•All America Chapter, South Central and Western Kansas Division, Member, Board of Trustees (1985 – 2011)

•All America Chapter, South Central and Western Kansas Division, Chairman, Board of Trustees (2001 – 2011)

•All America Chapter, Member, Board of Trustees (2002 – 2010)

•All America Chapter, Chairman of the Board of Trustees, (2007 – 2010)

•Mid America Chapter, Wichita Board - Member, (2011 – present)

•Mid America Chapter, Wichita Board - Chairman, (2011 – present)

•Mid America Chapter, Member, Board of Trustees, (2010 – present)

•Mid America Chapter, Member, Research NOW Committee, (2013 – present)

•Midwest Region Volunteer Leadership Council - member, (2011 – present)

•Midwest Region Volunteer Leadership Council - Chairman, (2014 - present)

•National Volunteer Leadership Council, (2011 - present)

8 MS CONNECTION: SUMMER 2014

Citizen engagement in the electoral process has always been in the heart of our American democracy. It is certainly in the heart of our MS Advocacy efforts. On February 12, 2014, hearts of our MS Activists were on full display at our Kansas MS Action Day at the state capitol in Topeka. MS Activists wearing or-ange and traveling from across the state came to meet with their representatives and senators about the National MS Society’s priority issues in Kansas.

Brent Kirkhart describes his experience that day.

“I was diagnosed with MS in 1997. I knew that I would be faced with obsta-cles in my life, but like countless others, didn’t know when or what they would be or when they would happen. I live in a multilevel home. In the past couple years I made some home modifications that make it easier for me to get around in my home.

A year ago, I was asked to tell my story at the state capital to a group of activ-ists and those interested in the Disability Access Tax Credit. Not only did I get to speak in front of that group, but I also spoke in front of the Senate State Tax committee. Not sure what to expect from the committee members, I told my story of how important it is to help those of us with a disability, particularly when we need to make home modifications. These home modifications not only make it easier to get around in our homes, but

it also allows us to remain in our homes and live with our families longer. See-ing the committee members, I saw their expressions and concerns of “wanting to help” on their faces.

“It made me feel good inside that I was able to help get this bill passed. I got to meet individual representatives and senators and ask them personally for their support. Now with my strength and my mobility failing more, we are forced to try and find a different home and sell ours so that it will be easier to get around. Now that the DATC passed, I feel more comforted that we will get some financial assistance to make what modifications we may need to make to our new home.”

SOCIETY LEGISLATIVE PRIORITIES IN KANSAS The priority issues of the MS Society were the reinstatement of the Disabled Access Tax Credit (DATC), Medicaid Expansion and the MS Caucus. DATC The Mid America Chapter of the National MS Society applauds Governor Brownback’s signa-

BRENT AND TYLER KIRKHART AND KARI AND JACQUE RINKER ARE MS ADVOCATES.

ADVOCACY

BEING AN ADVOCATE

9MSMIDAMERICA.ORG | 1-800-344-4867

Get the most up to date information on a variety of topics the second Monday of every month. Teleconferences are FREE, but registration is required. We will send call-in information and handouts the week prior to the call and you will receive a reminder the day before the call. All calls are recorded and posted to our website under Lending Library two weeks after the call. To register call 1-800-344-4867 and press 1.

MidwestTeleconferenceSeries

BECOME AN ADVOCATE Our 2014 MS Action Day may be behind us, but it is never too late to become an MS Activist and raise your voice speaking to issues that impact the lives of people living with Multiple Sclerosis and their families. Go to www.nationalmssociety.org/Chapters/KSG/Advocate-for-Change/Become-an-MS-Activist and sign up today.

EMERGING THERAPIES JULY 14, 2014 AT 7 P.M.

•Learn the im-portance of a healthy diet in managing MS symptoms

•Understand appropriate nutrition for healthy living.

•Gain insight about specific diets and their impact on your health

•Know the fo-cus of NMSS research and the NOW Campaign

•Understand the challenges of researching progressive MS

•Learn what’s in the pipe-line for future treatments

•Learn about oral disease modifying medications currently avail-able

•Understand the potential side effects associated with each therapy

•Discuss the timeline for new therapies

PRACTICAL NUTRITION FOR PEOPLE WITH MS AUG. 11, 2014 AT 7 P.M.

WHAT’S HAPPENING NOW IN PROGRESSIVE MS RESEARCH JUNE 9, 2014 AT 7 P.M.

ture on sub SB 265, which includes language reinstating the Disability Access Tax Credit for individuals who make modifications to their homes. Thankfully, due to the diligent ensem-ble of our Kansas MS Activists, MS Caucus and Government Relations Committee, the Kansas House and Senate passed the Disabled Access Tax Credit, with a unanimous vote, to once again include individual home modifica-tions.

MEDICAID EXPANSION The Society believes Medicaid Expansion will have a significant, positive impact for Kansans living with multiple sclerosis. MS Activists encouraged their legislators to “close the gap” of uninsured people who make too much to qualify for Kancare under current income requirements, yet earn too much to qualify for insurance subsidies in the Federal Insurance Marketplace.

MS CAUCUS The Kansas MS Caucus will provide unique awareness to multiple sclerosis under the dome, engaging legislators and staff, keeping multiple sclerosis and its effects at the fore-front of their decision making. As a result of the efforts of our MS Activists, we now have four senators and 17 representatives signed on to our Caucus! n

MS CONNECTION: SUMMER 2014

RESEARCH

PROGRESS IN PROGRESSIVE MS

10

BY BRUCE BEBO, PHD ASSOCIATE V.P., DISCOVERY RESEARCH, NATIONAL MS SOCIETY

One important way researchers share their latest findings at big meetings like the American Academy of Neurology is during the twice daily “poster sessions.” During these sessions, researchers display the results of their studies on wall sized posters and these posters are pinned to rows upon rows of portable display boards in one of the largest halls of the convention center. During these “sessions” the authors of the posters stand by their boards and are available to present and discuss their work with other scientists. Think scientific speed dating! The MS poster sessions have been jam packed, so it really feels like you are in the trenches of MS research.

We are learning more and more about what drives MS progression, or worsening – which many people with MS will eventually experi-ence. Understanding the factors that drive MS progression will provide new approaches to stopping, reversing and restoring what’s been lost. One of these factors appears to be smok-ing. Previous studies have shown that smoking can increase the risk of developing secondary progressive MS (the progressive form of MS that follows an initial diagnosis of relapsing MS) by as much as 3-fold! The good news reported this week during a poster session on MS health outcomes research is that this risk is

reduced by quitting. The authors found that for every year that passes after a person stops smok-ing, the risk for progression is reduced by 5%. The reasons why smoking promotes progression remain to be determined, but I think we know enough now to strongly state that people with MS who smoke should really stop.

Did you know that according to clinicaltrials.gov, there are 57 clinical trials testing a variety of therapies for progressive forms of MS? While we still wait for definitive results for these ongo-ing trials, some hints regarding the effectiveness of these and other therapies were presented this week.

Analysis of brain atrophy (shrinkage) from clin-ical trials of Gilenya found a consistent reduc-tion in the rate of brain atrophy. Since many believe atrophy is a consequence of neurode-generation, and in turn that neurodegeneration is probably responsible for progression, this is a strong hint that Gilenya might be able to slow down progression.

There were several reports on the activity of an investigational agent called laquinimod sug-gesting that it may also be a good candidate for the treatment of progressive disease. One report found that laquinomod could suppress the activation microglial cells. Microglial cells are the only immune cells that live exclusively inside the central nervous system (brain and spinal cord). While these cells are important for protecting the nervous system from infections, overactive microglia may have a detrimental role in promoting and prolonging inflam-mation in the brain, which may be a factor that fuels progression. A group of Canadian researchers reported that laquinimod could inhibit microglial cell activation and in turn

MSMIDAMERICA.ORG | 1-800-344-4867

RESEARCH

PARTICIPANTS NEEDED

11could also reduce injury to neurons. Another study looked more closely at previous results from clinical studies of laquinimod in relapsing disease and found evidence that treatment with this agent significantly slowed progression and reduced brain atrophy even in a subset of the study participants who didn’t have relapses, sug-gesting that laquinimod also holds promise for progressive forms of MS.

Non-pharmacological approaches for slowing progression are also being tested and reported this week. I learned that an herb called Cur-cuma longa contains a compound called Ar-tu-merone and that this compound can reduce the activity of microglial cells and also promote the proliferation of neural stem cells. Neural stem cells are a natural, internal source of nervous system cells that have potential to regenerate nerves and oligodendrocytes (myelin producing cells that are damaged in MS). Although this is at a very early stage, Curcuma longa strikes me as a very interesting candidate to consider for the treatment of progressive MS.

The 1-year results of a low fat, plant-based diet in MS were reported by a group from Oregon Health and Science University in poster session devoted to diet and hormonal influences in MS. The study included 61 participants, about half of whom were on the test diet. While the team failed to show any measurable clinical or imaging (MRI) benefits, the subjects on the test diet did lose an average of 16 pounds and had significant improvements in their cholesterol levels. The small size of this study probably limited the ability to detect changes but I am encouraged that they achieved excellent com-pliance to the diet and have developed a model for other trials of MS diets to follow. n

BALANCE EVALUATION SYSTEMS TESTS This is a research study to learn more about the Balance Evaluation Systems Test (BESTest) and Mini-Balance Evaluation Systems Test(Mini BESTest). The tests aim to determine if the tests are reliable (consistent) over time and if they are able to detect small changes in performance. Criteria for Participation: Complete of two testing sessions, the first session will take ap-proximately 1 hour, 15 minutes. One week later, participants will be asked to return for the second session, which should last no more than 1 hour. Contact: Kirsten Potter, Associate Professor Physical Therapy Education, Rockhurst University, Kansas kirsten.potter@rockhurst.edu or 816-501-4486 Brooke Bauer at bauerb@hawks.rockhurst.edu

SLEEP & MS COGNITION RESEARCH STUDYContact: Catherine Siengsukon PT, PhD, Assistant Professor Physical Therapy and Rehabilitation Science Department – KU MED csiengsukon@kumc.edu or 913-588-6913.ADHERENCE RESEARCH STUDYContact: 816-235-5428 ext. 1 e-mail: ms-medfeedback@umkc.edu.EARLY DETECTION OF VISUAL CONTRAST SENSITIVITYContact: Malea Barnard Executive Staff Assistant Vision Research Center (UMKC) Phone: 816-404-1834, 9 AM - 4 PM.

MS CONNECTION: SUMMER 2014

ON THE MOVE LUNCHEON JUNE 5, 2014, 11:30 A.M. – 1:00 P.M.HAPPY HOLLOW COUNTRY CLUB1701 S. 105TH ST. OMAHA, NEKEYNOTE SPEAKER: JULIE ROBERTSCountry singer, Julie Roberts, lends her voice to a cause she is passionate about. Julie was on the road touring her freshman record when she was diagnosed with multiple sclerosis in 2005. She didn’t reveal she was battling the debilitating disease until 2011 but now shares her story that has given her strength to face her past and record music that is a reflection of her life. For tickets contact: Linda Hogrefe at 402-390-6292 or linda.hogrefe@nmss.org

KANSAS CITY SUMMER SOCIAL AT T-BONES BASEBALL GAME JUNE 7, 5:30 P.M. COMMUNITY AMERICA BALLPARK 1800 VILLAGE W. PARKWAY KC, KSKansas City T-Bones baseball game, tailgating, BBQ, Baseball and Fireworks. This is a fun evening of food and baseball while connecting with others living with MS. Tailgating begins at 5:30 and includes a BBQ dinner. The National Anthem plays at 7:05.

Registration is full but call if you would like to be placed on a wait list. Contact Jean Long at 816.448.2180.

COUPLES RETREAT, JULY 12-13 LIED LODGE AT ARBOR DAY FARM2611 ARBOR AVENUE, NEBRASKA CITY, NE Registration opens June 3 at 10 a.m. Spaces fill within hours of registration opening. We invite you and your spouse/partner to an overnight retreat for couples living with the challenges of MS.

Having a successful relationship is hard work even in the best of times. MS can make it even more challenging. We are proud to offer this program specifically designed to help couples negotiate and manage the uncertainty of living with MS.

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

communication •Apply problem solving techniques •Manage MS as a team •Develop skills for life•Help your partnership thrive

Join us for a relaxing weekend at the beautiful Lied Lodge. Your cost is just $100 per couple (a $550+ per couple value). To register, visit msmidamerica.org or call 1-800-344-4867, press 1.

12

LIVING WITH MS PROGRAMS

UPCOMING PROGRAMS

JULIE ROBERTS ON THE MOVE KEYNOTE SPEAKER

13MSMIDAMERICA.ORG | 1-800-344-4867

talk MS

WICHITA, KS- JUNE 3, 5:30-8 P.M.LOCATION: Reformation Lutheran Church, 7601 East 13th St N, Wichita, KS 67206SPEAKER: Tally Bell, APRNTOPIC: MS Research UpdateQUESTIONS: Kari at kari.rinker@nmss.org

UPCOMING PROGRAMS

TALK MS Whether you are newly diagnosed or looking to connect with others, TALK MS is an opportunity to join others living with MS for an informal conversation about various topics related to MS. A complimentary, light dinner will be provided by Biogen. Registration is free and required. To register for an upcoming TALK MS, call 1-800-344-4867 and press 1, or visit midamericachapter@nmss.org.

2014 TREND SYMPOSIUM - MS IN THE DIGITAL AGE FROM LOW-TECH TO HIGH TECH AUGUST 2, 9 A.M. - 3 P.M.KU EDWARDS CAMPUS, OVERLAND PARK, KANSAS AND NEBRASKASpace is limited. Registration if free and lunch is included. The keynote speaker, Dr. Jessie Huisinga, from the University of Kansas, will discuss evidence based research technologies and how they can improve the quality of life for people living with MS. An Assistive Technology Experience, consisting of new and enhanced technologies, will be available to see and try. After lunch, a question and answer panel of health professionals will discuss implementing new technologies. Visit msmidamerica.org or call 1-800-344-4867, press 1 to register.

SSDI PROGRAMJULY 26, KANSAS CITY, MOMid America Chapter Social Security Disabil-ity Insurance (SSDI) Program provides: •Information and resources for those just

starting the application process •1-on-1 assistance completing the application •Referral to an attorney who specializes in

disability applications This is a volunteer-led program of the Nation-al MS Society. Visit msmidamerica.org or call 1-800-344-4867, press 1 to register.

SALINA, KS - JUNE 5, 6-8 P.M.LOCATION: Redeemer Lutheran Church743 E Magnolia Rd, Salina, KS 67401 SPEAKER: Tally Bell, APRNTOPIC: MS Research UpdateQUESTIONS: Kari at kari.rinker@nmss.org

14 MS CONNECTION: SUMMER 2014

When Ashley Martin was diagnosed with MS in 2011, she didn’t know much about the disease, but she knew she wanted to do something. “I had no idea what MS was, I was very concerned and at first it was scary,” Ashley said. “I’ve always had a very optimistic view about everything in life in general, I want to right away get involved.”

Despite not having a bike, Ashley wanted to start a Bike MS team. So her family gave her a birthday surprise. “My entire family contributed and got me a bike which was a really cool surprise,” Ashley said. So Ashley and her husband were set for Bike MS. They formed a team - Just For Fun, grabbed some friends and were ready to ride.

“We had no idea what to expect with the ride, but it was a really awesome experience,” Ashley said. “It was really cool to see more than 2,000 riders at the event supporting the Society, helping find a cure and help support services. I had just never been part of something like that.” Ashley rode 70 miles the first day and 30 the second and became a top 20 fundraiser with $3,750 of her team’s total of more than $5,000. “It’s really important to bring awareness for the community and raise money

for a cure and to fund the services for people who need them,” Ashley said. “It’s also nice to have that weekend of support and have everyone around you who kind of understand what you are going through.”

Ashley and So Much Fun are looking for more this year. “We’re hoping get 10-15 people at least,” Ashley said. “I really want to become a big team and keep growing. My doctor definitely thinks there will be a cure in our lifetime. So continuing to raise awareness and funds will help us get there.” n

BIKE MS

TEAM JUST WANTS TO HAVE FUN

ASHLEY MARTIN AND HER TEAM JUST FOR FUN, RAISED MORE THAN $5,000 LAST YEAR.

15MSMIDAMERICA.ORG | 1-800-344-4867

BIKE MS: WICHITA RIDE: AUTUMN TRAILS CLASSIC SEPTEMBER 6-7 » PRATT, KS DAY 1: 30, 50 AND 80 MILE ROUTESDAY 2: 30 AND 50 MILE ROUTESSTART/OVERNIGHT/FINISH: LIBERTY MIDDLE SCHOOL

4 Rides - 1 Destination A world free of MS

If you’ve ridden Bike MS in the past you know about the great support, camaraderie and sense of accomplishment of not only crossing the finish line but knowing you’re helping create a world free of multiple sclerosis. If you’re looking for a different adventure there are four great rides within an easy day’s drive and the destination is the same - a world free of MS.

BIKEMS.ORG 1.800.344.4867

GET $10 OFF REGISTRATION WITH THE CODE CONNECTION

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CLEVER, MO SEPTEMBER 6-7

PRATT, KS SEPTEMBER 6-7

BELLEVUE, NE SEPTEMBER 6-7

OLATHE, KS SEPTEMBER 13-14

Ride 2014

GatewayGetaway

BIKE MS: OZARKS RIDE 30TH ANNIVERSARY SEPTEMBER 6-7 » CLEVER, MO DAY 1: 40, 75 AND 100 MILE ROUTESDAY 2: 75 AND 100 MILE ROUTES START/FINISH: CLEVER HIGH SCHOOL OVERNIGHT: EAST MIDDLE SCHOOL, JOPLIN, MO

THERE’S A RIDE NEAR YOU!

BIKE MS: NEBRASKA RIDE BELLEVUE, NE » SEPTEMBER 6-7 DAY 1: 25, 50, 75 AND 100 MILE ROUTESDAY 2: 30 AND 50 MILE ROUTES START/OVERNIGHT/FINISH: BELLEVUE UNIVERSITY

BIKE MS: KANSAS CITY RIDE OLATHE, KS » SEPTEMBER 13-14DAY 1: 35, 75 AND 100 MILE ROUTESDAY 2: 35 AND 65 MILE ROUTESSTART/FINISH: GARMIN HEADQUARTERS OVERNIGHT: SOUTH PARK, LAWRENCE, KS

7611 State Line Rd., Ste. 100 Kansas City, MO 64114

MSmidamerica.org1-800-344-4867midamericachapter@nmss.orgfacebook.com/MSmidamerica

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. • Stay in an air-

conditioned environment.

•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 when outside.

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

•Utilize cooling devices such as vests and neck wraps.

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

LIVING WITH MS

TIPS TO BEAT THE HEAT & STAY COOLRESOURCES WEBSITE PHONEMS Association (MSAA) Cooler mymssa.org/ 800-532-7667

MS Cooling Program

msfocus.org/Cooling-Program.aspx 888-673-6287

Body Cooler bodycooler.com 832-422-7449Cool Medics coolmedics.com 800-505-0050Glacier Tek, Inc. coolvest.com 800-482-0533Polar-Products (CA) polar-products.com 800-597-0618Polar-Products (OH) polarproducts.com 800-763-8423Steele, Inc. steelevest.com 888-783-3538

OTHER RESOURCES:United Way 2-1-1: www.211.org or dial 2-1-1National MS Society Information Resource Center: 1-800-344-4867, option 1.

STATE RESOURCES:For information about state regulation on utilities during hot weather, contact your state’s attorney general’s office at: KS, www.ag.ks.gov or 888-428-8436MO, www.ago.mo.gov or 800-392-8222NE, www.ag.ne.gov or 800-727-6432IA, iowaattorneygerneral.gov or 888-777-4590