BY ELENA PASCALE

My 26-year-old daughter, Jessica, was diagnosed with relapsing-remitting multiple sclerosis five years ago. I remember the day we received her diagnosis. I felt weak in my knees and cried like a baby. I of course blamed myself, asking, “What did I do to cause this?” and “What did I miss that would have changed this outcome?” Just a month before, Jess had been diagnosed as being on the autism spectrum. We were faced with a double whammy, with no idea what to do next. How would I explain to my daughter what she was facing?

Since that horrible day, our lives have continued and we have all become stronger, especially Jess. She is determined to never let this disease get her down. Our family has become MS advocates, and Jess is our leader! We participated in our first Walk MS event in New Hampshire the year she was diagnosed. Five years later, “Team Jess” has raised nearly $80,000. Our friends and family are so supportive and are always there for us.

This is my story of fear of the unknown, but also of hope for the future with understanding and love. My focus will always be Jess, and she has

grown and understands her own responsibility towards her MS. MS does change your life, but it should never take over and become your life. We are so proud of Jess and her strength through all this because it has made our family stronger — even when we are at our weakest! We will always have the challenges of MS, but because of Jess, our lives have a different meaning and we are all in this together.

It is so easy to sit back and cry, but is so much easier to smile and look ahead with hope and love. Be grateful for the time you have with your family and never give up looking for a cure. n

SUMMER 2015 MID AMERICA CHAPTER

MS CONNECTION NEWSLETTER

INSIDE 4-5CONNECTION GROUPS

6DOC TALK

81ST GENERIC THERAPY APPROVED

10SHARE YOUR STORY

LIVING WITH MS

FACING A FUTURE WITH MS IN YOUR FAMILY

THE PASCAL FAMILY HAS ONLY BECOME STRONGER

11WALK MS BIKE MS

2 MS CONNECTION: SUMMER 2015

Dear friends,

This issue of your MS Connection is all about families. There are lots of ways to be a family:

•We are born into families;

•We choose our families over our lifetimes;

•Often our friends become our families;

•Support networks (like National MS Society connection groups) can also be like a family!

Families can be the source of our greatest comfort - and sometimes, our greatest frustration or heartbreak. And we know that when a person lives with multiple sclerosis, MS impacts their entire family.

For families affected by MS, it can sometimes be a powerless feeling to watch the disease you hate as it changes the life of someone you love. But… friends and families are not powerless against this disease! Together, families can use MS as an opportunity to become closer and draw strength and support from each other. And love for a person with MS is the most powerful motivator in the fight to end this disease forever!

We encourage you to share this issue (and, in fact, all issues of your MS Connection!) with your friends and family. The people who care about you want to do something to help you live your best life! Connecting with the National MS Society (through Walk, Bike, legacy giving, volunteering, awareness, or advocacy) is one of many ways that your family can show support for you!

Please connect your family with the many ways they can engage with the work of the National MS Society. It will take all of us, together as a community of determined people, to end MS once and for all.

As always I am grateful for your support and continued partnership on our shared journey. All my best to you and your families.

Warm regards,

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

Chairman: John Snyder Chapter President: Tami Greenberg

© 2015 National Multiple Sclerosis Society, Mid America ChapterInformation 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.

FROM THE PRESIDENT

FAMILY FIRST

TAMI GREENBERG CHAPTER PRESIDENT

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

Multiple sclerosis creates a range of challenges that can result in short-term financial crises, difficulty obtaining critical equipment and home or auto modifications, and diminished capacity to pay for MS-generated needs. The National MS Society Financial Assistance Program offers guidance, leverage and resources to help contain the financial impact of MS. The program was developed to bring meaningful financial assistance to people living with MS, with emphasis on helping people maintain their independence, safety, health and quality of life. Anyone with a confirmed diagnosis of MS who can demonstrate true financial need associated with the effects of the disorder is eligible for consideration. The Society may not be able to fulfill all requests or cover all expenses related to a needed service or item. When we are not able to fund specific needs through our own program resources, we can provide information and resources to help identify alternative solutions.

To speak with an MS Navigator®, who can review available resources with you and provide an application, please contact the Society at 1-800-344-4867.

Financial Resources •http://bit.ly/msfinancialassistance•http://bit.ly/msfinancialplanning n

LIVING WITH MS

NAVIGATORS HELP STEER THROUGH TOUGH TIMES

LIVING WITH MS

2015 PROGRAMS

JUNE 6Family Get Away DayJoslyn Art MuseumOmaha, NEThis program is full. An additional family event is in development for the fall. Please contact Jean Long if you have ideas about great family activities in the Omaha area.

JUNE 8 - JULY 27CogniFitness [NEW]Mondays 5:30-7:30 p.m. Madonna Rehabilitation Hospital, Lincoln, NE

JUNE 27TREND SymposiumUniversity of Kansas Regents Center in Overland Park,KS and online

JULY 25-26Couples RetreatBranson, MORegistration opens June 15

NATIONAL TELECONFERENCE nationalMSsociety.org/telelearning Contact Jean Long at 816.448.2180 or jean.long@nmss.org.

ONE-ON-ONE PEER CONNECTIONShttp://bit.ly/msone-on-one

MS FRIENDS1-866-673-7436.

MSCONNECTION.ORGMSconnection.org

VOLUNTEER- DRIVEN PROGRAMS & CONNECTION GROUPSContact Jean Long at 816.448.2180 or jean.long@nmss.org.

Consider participating in one of these upcoming programs to connect with others impacted by MS and take charge of your life through information.

4 MS CONNECTION: SUMMER 2015

TOLD BY JEAN LAWING

1984 was a turning point in Jean Lawing’s life. She was having physical symptoms that weren’t normal and she soon was told by her doctor that she likely had multiple sclerosis. For any of you that know Jean Lawing know that when she is faced with an obstacle of any kind she looks for the positive in the situation. Thus, she began her journey with the MS Society and her desire for support and to help others. Three years after her she was first told her she had MS, the same doctor suggested she go to a MS Support Group. Jean readily admits she was scared to death to attend a meeting. She knew

no one and had no idea what to expect. What she found is that everyone in the group was like her; they were all there for a common goal, to become educated about the disease and to be around other people who

understand what it is like to have MS.

Jean would travel to Kansas City for meetings but soon realized that maybe she could begin a group in her own community. So along with two friends, Jean formed a daytime MS Support group that met in the Cass County area. After her first meeting, the newspaper ran an advertisement about her group and the headline of the article read, “ 11 people from 5 cities in Cass County met for the Cass

County MS Support Group” The support group provides education, support and fellowship for those living with MS. Through the years, the Cass County MS Support group has met in several locations from restaurants, to now meeting regularly at the Belton Research Medical Center. The group has an annual Christmas Dinner held at a local BBQ restaurant. The group always invites the Bates County Support group and together the dinner has 40-50 people attendance every year.

When asked what has kept Jean and her group going for so long, Jean replies, “First of all, the group is not mine, it is not about me, the group is about the people who come. I want to provide the group with an environment that is welcoming and positive. I want the group to have insight into MS, so I provide speakers who will educate us on all aspects of the disease. I want them to know that someone cares about them, so I call my group members every month before the meeting. Most importantly, I want them to know that a diagnosis doesn’t mean their life has to end. I want them to know with the support of others, they can move forward in living the fullest life possible.” And Jean has done just that in her own life, through the years she has been involved in the MS Society in many ways from leading her support group, to serving on the Board of Directors, to volunteering with the Read-a-thon, Walk MS and Bike MS. Her support and dedication to the MS Society is immense and proof of that is in her support group…28 years in existence and still counting!. n

CONNECTION GROUPS

CONNECTING WITH OTHERS FOR 28 YEARS

CASS COUNTY SUPPORT GROUP 1st Monday, 10 a.m. Belton Regional Medical Center 17065 US-71 Belton, MO 64012

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

BY KAREN NEUFELD

My involvement with a MS Society Connection Group began last fall when I learned about opportunities to help lead MS Connections Groups from the Society website. I contacted Jean Long of the Mid America Chapter and she helped guide me in the process. I was able to take the training for leaders available through a series of four teleconferences. These sessions were very helpful as I listened to the experiences of other leaders who already had been leading groups as well as the expert advice from the National MS Society instructor.

Initially, I felt led to start a group to engage persons newly diagnosed with MS because when I looked back to when I was first diagnosed about seventeen years ago, I saw myself in that group. I had just wanted this disease to somehow go away. Maybe if I didn’t talk about it that would happen. Unfortunately, it doesn’t work that way. I had two sisters who also were diagnosed with MS, so over the years we encouraged each other. I was motivated to create a similar support system that I developed with my sisters.

It can be difficult to reach out for help. We think we can manage on our own but sometimes it turns into suffering alone. Yet the help we give also eases our own pain. Support groups are a place where we can share feelings with others who understand. Even close family members can’t comprehend the vague descriptions of hidden symptoms like fatigue, pain and confusion caused by cognitive impairment.

Even after our first meeting, I felt immediate relief in sharing this journey with others. From those who are newly diagnosed to those who have had MS for decades we are all connected in the MS Hope in KC Support Group. Hope is what we need in the midst of an unpredictable journey. So if you find you need that hope or if you can be that hope for someone else please join our group.

The focus of our group will be both supportive and educational. We will have times for sharing feelings in a confidential environment as well as occasional guest speakers from the medical field. We meet in a local medical building that is totally accessible on the 3rd Thursday of every month at 5:30 to about 7:00 p.m. Refreshments are always provided. If you need more information, please don’t hesitate to give me a call (816) 358-8664 or e-mail me at ksneuf@gmail.com. n

MS HOPE IN KC SUPPORT GROUP 3rd Thursday, 5:30-7 p.m. Research Neuology Associates 6400 Prospect (West Building) Suite 316 Kansas City, MO

For information about these and other existing Connection Groups, or to start a group in your community, please contact Jean Long, Programs, Services and Connection Group Coordinator at jean.long@nmss.org or 816.448.2180.

CONNECTION GROUPS

NEW CONNECTIONS ARE POSSIBLE

66 docTALK

BY LISA STALP PSYCHOLOGIST REHAB INSTITUTE OF KANSAS CITY While many couples may think about the possibility of being a caregiver for spouse in later years, not many think about the possibility of either having a disability or being a caregiver in midlife. This is often what happens when a partner is diagnosed with MS, as the onset is most likely to occur between the ages of 20 and 40.

Although much intervention and treatment is focused on the person with the MS diagnosis, both partners experience change and loss. The response of each individual partner to these changes affects adjustment and wellness of the other. In a similar way, being part of a strong and satisfying relationship helps both partners to cope more effectively with disability. Primary relationships need attention and care, along with emotional and physical health of the individuals.

COMMUNICATIONCommunication is important for every couple to feel close, to manage differences and to handle everyday functioning in a home. The need for good communication increases when a couple is going through a time of change or crisis.

Even as the importance of communication increases, some people withdraw or hesitate to

talk about issues that are difficult or issues that may not have easy solutions. Some might think that “If there is no way to fix it, what is the point of talking about it.” Avoidance of discussing issues related to MS can have a negative impact on both the person with MS and their partner. The most effective approach is to speak directly, honestly, and kindly even when talking about difficult topics. Each person has a responsibility to express needs, feelings and concerns clearly. The other side of that is that each person needs to be able to listen with respect and without judgement or defensiveness. Sometimes, it could be helpful to sit down with a third person, who is in the role of counselor, either to help strengthen communication skills or to help address a specific topic.

Depression can interfere with the goal of good communication. Depression, which is the most common psychological disorder associated

LIVING WITH MS

DEALING WITH MS AS A COUPLE

LISA STALP ATTAINED HER DOCTORATE AT THE UNIVERSITY OF NEBRASKA-LINCOLN AND PRACTICES AS A PSYCHOLOGIST AT THE REHABILITATION INSTITUTE OF KANSAS CITY.

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

with MS, can cause a person to withdraw from social support and limit communication. Caregivers are also susceptible to depression. If you feel like you or your partner might be experiencing depression, a good place to start would be talking with your physician or counselor.

ACCESSING OUTSIDE SOCIAL SUPPORT Even great relationships need support from others. Sometimes people can have mixed feelings about sharing with others. They may want to protect their privacy. They may feel that family or friends, though supportive, really do not understand what they are experiencing. However, it is important for each partner to have more than one person who can offer encouragement and a listening ear. It may be helpful to direct a supportive friend to material that explains the nature and effects of MS so that they can come from a place of greater understanding. It may also be helpful to share with friends specifically what you need from them – encouragement, listening, or practical assistance.

Involvement in support groups, including online support groups, can be an excellent source for understanding, support, and practical ideas for both partners.

Respite care is another facet of outside support whether this is provided by paid help or familiar people. Sometimes, partners do not recognize need for respite care or prioritize it. Having some time away is important and normal.

INTIMACY AND AFFECTION Physical affection is another important way that couples connect, and express love for each other. MS related sensory and motor changes,

fatigue, spasticity, and bowel and bladder issues can impact sexual function. Couples must be open to an ongoing conversation about needs of each partner. What someone experiences as pleasurable may change with decreased sensation, or actually become painful. Having such conversations, while it might feel uncomfortable to some, could actually contribute to enhanced feeling of closeness and bonding. Having someone really listen to you, care about you, and respond based on your needs, builds intimacy.

Fatigue can be a factor for both caregiver and the partner with MS. As with other important activities in your life, use your best times and best energy for time together. Your relationship belongs at the top of the list. Remember the goal is to feel connection and express affection for the other person, even though the specific actions might change over time. n

SOURCES : Blackmore DE, Hart SL, Albiani JJ, Mohr DC. Improvements in Partner Support Predict Sexual Satisfaction among Individuals with MS. Rehab Psych. 2011 May;56(2):117-122.

Thompkins SA, Roeder JA, Thomas JJ, Koch KK. Effectiveness of a Relationship Enrichment Program for Couples Living with MS. Int J MS Care. 2013 Spring;15(1): 27-34.

Wright DE, Stepleman LM, Davis KN, Hughes MD. Development of a Group Educational Intervention for Sexual Functioning and Intimacy Concerns in Patients with MS. Int J MS Care. 2009;11:107-113.

8 MS CONNECTION: SUMMER 2015

RESEARCH

FIRST GENERIC THERAPY APPROVED

8

The U.S. Food and Drug Administration has approved a generic form of Copaxone® (glatiramer acetate), called “Glatopa”™ (Sandoz, a Novartis company, developed with Momenta) as a disease-modifying therapy for people with relapsing forms of MS, including those who have experienced a first clinical episode and have MRI features consistent with MS.

The generic medication is a 20mg dose injected under the skin every day. This approval means that the manufacturer provided evidence that this generic medication is equivalent to the brand-name drug (Copaxone®). There is no information yet on when Glatopa will be available by prescription in the United States, or what it might cost.

“Having a generic option for one of the MS disease-modifying therapies is an important milestone, and it has the potential to increase access to MS therapies,” commented Dr. Bruce Bebo, Executive Vice President, Research at the National MS Society. “Early and ongoing treatment is currently the best way we know to reduce future disease activity for people with relapsing forms of MS,” he added.

Selecting a therapy should be done by people with MS in collaboration with their MS doctors, taking into account a variety of factors, including the effectiveness of any therapy they are currently using, and weighing potential risks and benefits, costs and lifestyle

factors.ABOUT GLATOPAThe FDA has approved a generic medication that has been shown to be equivalent to 20mg daily glatiramer acetate. Glatopa is not a generic version of the 40mg dose of Copaxone taken every three days. Glatiramer acetate is a synthetic protein that mimics myelin basic protein, a component of the myelin that insulates nerve fibers in the brain and spinal cord. This therapy seems to block myelin-damaging T-cells through a mechanism that is not completely understood. The approved generic form of glatiramer acetate is given by subcutaneous (under the skin) injections every day.

POTENTIAL BENEFITS In clinical trials of glatiramer acetate, it was shown to significantly reduce annual relapse rates and new brain lesions as shown on magnetic resonance imaging (MRI), when compared to those who were given a placebo. This therapy has had a long track record of effectiveness and safety.

As part of the generic medication approval process, the FDA requires that generics have the same active ingredients, strength, dosage and mode of administration as the brand-name medication, and that they are manufactured according to federal quality control regulations. Clinical trials are generally not required to prove equivalence to a brand-name medication.

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

POTENTIAL RISKS AND SIDE EFFECTS Side effects of glatiramer acetate that generally resolve on their own and do not require medical attention unless they continue for several weeks or are bothersome include injection-site reactions (e.g., swelling, the development of a hardened lump, redness, tenderness, increased warmth of the skin, itching at the site of the injection); runny nose; tremor; unusual tiredness or weakness; and weight gain. There is also the potential for local damage to the skin (necrosis) and underlying tissue (lipoatrophy).

Some people using glatiramer acetate experience, at one time or another, a very temporary reaction immediately after injecting glatiramer acetate. This reaction, which often occurs only once, includes flushing or chest tightness with heart palpitations, anxiety, and difficulty breathing. During the clinical trials, these reactions occurred very rarely, usually within minutes of an injection. They lasted approximately 15 minutes and resolved without further problem.

Unusual side effects of glatiramer acetate that should be discussed as soon as possible with your doctor include hives (an itchy, blotchy swelling of the skin) or severe pain at the injection site. n

ARE YOU INTERESTED IN PARTICIPATING IN A RESEARCH STUDY? To find about local and national research studies, go to http://bit.ly/msresearchstudy.

Partner in MS Care is a National MS Society program that recognizes and supports quality MS care by encouraging strong partnerships between MS clinicians and the Society. Partners in MS Care consist of health care professionals addressing:•Neurologic care •Mental health •Rehabilitation and•Multi-disciplinary, coordinated health care

(Centers for Comprehensive MS Care)

For more information about finding a Partner in MS Care in your area, please go tohttp://bit.ly/mscarepartner or call 1-800-344-4867 to find a service provider in your community. n

TAMMY ROEHRS, CENTER, FROM HORIZON REHABILITATION IN OMAHA, NEBRASKA ACCEPTS HER PARTNER IN CARE CERTIFICATE FROM MIKE PIETRO, OMAHA CITY BOARD CHAIR, AND TAMI GREENBERG, MID AMERICA CHAPTER PRESIDENT.

LIVING WITH MS

CHAPTER PARTNERS WITH REHAB CENTER

10 MS CONNECTION: SUMMER 2015

Personal stories provide emotional resonance and breathe life into an issue in ways that other methods cannot. A story bank, or a collection of stories, can help ensure that the National MS Society has the ability to show the impact of the issues that count the most for people impacted by MS. Stories can increase public awareness about MS and help guide the work of our advocacy and programs department.

WHAT KINDS OF STORIES DO WE WANT TO TELL?•Health care, prescription drugs and

insurance access. •Disability home modifications.•Importance of MS research.•Need for accessible communities. •What do YOU think the world needs to

know about MS?

As we share our stories we begin to build a culture of awareness, understanding, and support for people impacted by MS.

You can find our initial collection of stories at our website on our new “Stories from Mid America” page, http://www.nationalmssociety.org/Chapters/KSG/Stories-From-Mid-America. Please consider adding your story, your voice, and your experiences with MS to our story bank.

LIVING WITH MS TOGETHER Kelly wants the world to know that paying for medication is a nightmare! I have to get approved each and every year and it takes 6-8 weeks for this process. Each year, they deny my medication and I have to appeal. I went without my meds the entire month of January. If I didn’t have insurance, my drugs would cost $5,000 a month. It is estimated that the cost of living with MS is $70,000 per year. Just think in one year we could have paid the house off entirely instead of medical bills! One person living with MS is expensive…and we are living with two.

Dustin wants the world to know that that they shouldn’t write off people with MS. I use a cane but choose to walk the stairs at work until the disease stops me. I am going to keep working until I can’t work anymore. I keep moving. I keep living. n

ADVOCACY

WHY SHARE YOUR MS STORY?

MARRIED COUPLE DUSTIN AND KELLY CLARK OF OMAHA, NEBRASKA BOTH LIVE WITH MS AND TAKE IT DAY BY DAY.

11MSMIDAMERICA.ORG | 1-800-344-4867

WALK MS

NOT JUST A WALKYou may think Walk MS is a one-day event… It’s not. You may think Walk MS is a series of one-day events… It’s not. Walk MS is a community. Walk MS is a movement. Walk MS is a group of people who, every day, rally toward the vision of a world free of MS.

Yes, there are days on the calendar that the Walk MS community can physically get together to celebrate the people we love, with this disease that we hate. Those Walk MS days are an important opportunity to connect, share, be inspired, and move forward! And you can be part of the Walk MS community every day. Share your stories (of struggle, and success) on social media and Society’s new Storytelling page. Invite others to be a part of your fundraising efforts. Stay educated about the (really exciting!) advances in MS research. And remember how you felt, that day, when you were surrounded by a sea of orange and people who shared your commitment to end this disease, forever.

MS doesn’t take a break. It doesn’t show up one day a year. Like MS, the Walk MS community continues year-round. It lives within each of us, and it’s our experiences and passion that fuel our progress. So, although you may have already physically participated in a Walk MS gathering, let’s continue to drive movement forward. Let’s continue to talk about our experiences and raise funds. Because ending MS will take more than one day. Join the movement.

To continue to support Walk MS, visit walk.msmidamerica.org n

People affected by MS are always at the forefront of our minds—they drive our passion and urgency to accelerate research, programs, and resources so that MS may be cured sooner rather than later. The National MS Society Mid America Chapter has a passionate group of staff and volunteers who are constantly thinking about the next step to raise awareness and dollars to move the work forward.

Bike MS is the culmination of that work; raising over $1 million in local support every year. Nearly 3,500 cyclists across Kansas, Nebraska, and Western Missouri are expected to participate in Bike MS 2015. Bike MS is the premier fundraising cycling series in the world for anyone seeking a personal challenge and a world free of MS.

Volunteers are the backbone of Bike MS. We are seeking passionate enthusiastic individuals who are willing to give time and energy. Whether you have 1 hour to give on a single day, or are looking for a recurring experience, we need you! n

BIKE MS

VOLUNTEERS KEEP US ROLLING

MID AMERICA BIKE MS EVENT DATES Wichita June 20 Ozarks Sept. 12-13 Kansas City Sept. 19-20 Nebraska Sept. 26-27

To learn about volunteering at Bike MS contact Libby at libby.kreighbaum@nmss.org or, 816-448-2195.

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

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

NEXT MS CONNECTION WILL ONLY BE SENT BY EMAILThe September 2015 issue will only be sent electronically to your e-mail address on record. The December, March and June issues of the MS Connection will be sent hard copy and electronically to your e-mail. If you did not received an electronic version of this MS Connection, please call the Information and Resource Center at 1-800-344-4867 to provide or update your e-mail address. If you prefer to continue receiving a hard copy of the MS Connection you must let us know, please e-mail Jean Long at jean.long@nmss.org.