Publications Manager ““TTAALLKK BBAACCKK”” We Welcome Topic Suggestions Terry Schenker for Future Issues. Editorial Coordinator Your comments about each issue Christopher Paine are important to us. Editorial Committee Email comments to: Kasey Minnis [email protected] Natalie Blake or write to: Editor, MSFocus 6520 N. Andrews Avenue, Alissa Ayden Fort Lauderdale, FL 33309 Hildy Berger Marianly H. Primmer Jay Hass Contributing Writers Stephanie Butler Dorothea Cassidy Pfohl, RN, BS, MSCN Dan Digmann Jennifer Digmann, MA Gay Falkowski Colleen Fegan Joanne Fortunato Take MSFocus on the road with Dr. Miriam Franco, MSFocusRadio.org MSW, Psy.D., MSCS Ellen Whipple,Pharm.D. Listen on your PC or mobile device Laura McCatty, RN, BSN, MSCN Available 24/7 Mark McCatty David Osmond Randall T. Schapiro, M.D., FAAN Shelley Peterman Schwarz Ben Thrower, M.D. FEATURES The Challenges of Sexuality 6 Creating and Building Relationships with MS: A Dialogue between a Specialist Nurse and Psychologist 13 Keeping the Love Alive 16 6 Non-Sexual Intimacy Boosters 19 MSF Cruise for a Cause Sailing to New Horizons 26 Intimacy and MS: Make It Your Own 37 National Multiple Sclerosis Education and Awarenss Month ® Activities 39 Tips to Parents 46 Spotlight is on...the MSF Lending Library Program 62 iConquerMS Initiative Aims to Accelerate MS Research 66 CONTINUING TOPICS As We See It 4 Uncle Sam’s Helping Hand 54 MSF Mailbox 5 PS: What’s New? 56 From the Library 21 Regional Events 57 Facebook Feedback 33 MS Tech 101 60 Voices: Life-Changing Ocean Men & MS 64 Voyage Fills in a Blank 44 Support Group Spotlight 68 Updates by the Pharmacist 51 MS News 69

Statement of Purpose The purpose of the Multiple Sclerosis Foundation’s publications is to empower those affected by MS with the information necessary to make the most complete and educated decisions concerning their healthcare. We do not advocate or endorse any specific treatments, healing modalities, or practitioners. The material presented in this publication is for informational purposes only. For specific advice, consult a healthcare professional. MSF does believe that each person has the right to choose the treatments they feel are best, and therefore acts as a source of information, providing referrals to local resources and partnership in problem solving.

MSFocus is published quarterly in enlarged type for the benefit of our readers. Audio versions of featured articles are available for listening or download on www.msfocus.org (click On Demand Audio). Back issues are available online at www.msfocus.org. MSFocus is a free publication for individuals with MS, their families, and others interested in MS. LLeett’’ss MMaakkee TThhiiss OOnnee CCoouunntt -- FFiinnaallllyy.. Not long ago, a bill in Congress mobility of our society? What are all the authorizing a means of counting the characteristics of patients, their family number persons diagnosed with either MS histories, and how many reside within a or Parkinson’s (H.R. 1362, The National given locale? This is just to name a few Neurological Diseases Surveillance System possible insights we could gain. Act), though having passed a vote in the When it comes to how we view MS and U.S. House of Representatives, didn’t make other neurological diseases, of course, it’s it past the Senate. This failure was about individuals and how they are troubling to most of us around the country, affected. However, there is also the cost to as it was just another piece of badly needed society in terms of the loss of productivity legislation that got caught up in the malaise of dysfunction affecting Congress. of a portion of the population and all With regard to MS, the number of persons its corresponding economic and social in the U.S. so affected ranges from ramifications. At the core of it all, lies the 350,000 to 500,000 depending upon which depth and breadth of our understanding of scientist, neurologist, advocacy organization, disease on both the cellular and “people” or pharmaceutical industry representative levels. Our willingness to provide solutions you are speaking to at the moment. is a measure of the direction of our moral Many speculate those numbers could be compass as a nation. This is what drives significantly higher. It’s a guess at best, our ability to develop treatments and cures. and it has its basis in studies done in the We, at the MSF, join with our fellow seventies. To say we are long overdue advocacy organizations in appealing to for obtaining a realistic count is an Congress to pass this bipartisan initiative. understatement. Add your voice as well by contacting your Fast forward to the present where up elected representatives on Capitol Hill. before Congress is the Advancing Research The links at the bottom of the MS for Neurological Diseases Act of 2015 Community Advocacy page on our website (H.R. 292 in the House and S.849 in the (www.msfocus.or g/Advocacy.aspx ) make Senate) . This bill proposes a comprehensive it easy. Let’s strive to help get it analysis of the incidence and prevalence through Congress as a “clean” bill, free of various neurological diseases including of controversial amendments, and onto MS. The benefits of these studies are too the president’s desk for his signature. numerous to list. However, it begins with opportunities to gain the best possible understanding of a disease. For example, where is a given disease more common, and has the geographic picture changed Jules Kuperberg Alan R. Segaloff through the years with the increased Co-Executive Director Co-Executive Director

MSFocus 4 Spring 2015 Thank you so much for the articles in I enjoy reading MSFocus magazine. the MSFocus magazine about Sew Pretty, Always an excellent source for timely and in the Support Group newsletter about topics and honest news! the Cape Coral Support Group. All the best for you in 2015, What a wonderful surprise to see them Sharon K. Fetters, Sweetwater, TN both. Thank you and please pass on my gratitude to all persons at the Foundation I want to extend my great appreciation who work on these publications. You have for your generous support through your been such a wonderful support to Sew assistive technology program for mushroom Pretty and me. buttons on the elevator I just had installed We are working very hard to get in my house. As my MS progressed, I was grant money for a working space or having difficulty transferring from my building that is handicap-accessible for wheelchair to my stair lift, then to a Sew Pretty, as well as a Community walker upstairs. The elevator carries me Resources Coordinator to serve as the in my motorized chair up into the organization’s resources developer and bedroom. Giant buttons are easier for special projects manager to help us as me to press since I have to keep pressing we grow. We have hired a grant writer to for the duration of the ride. I think of the help with this. Hopefully we will be able Foundation every time I press those to get funding for these two areas this buttons. Thank you so much. year. Our mission is still to donate our profits back to MS services and Tamar Sherman, Northport, NY research. I went to my neurologist’s office Thank you again for all of your support. yesterday and saw a pile of MSFocus so Martha Hannigan, executive director, I took one and just read it. Sew Pretty Corp. www.sewpretty-ms.com Well done and thank you! I appreciate Many thanks again for making it your articles. As someone living with MS possible for me to be made aware of, for about fifteen years, I have experienced A Mindfulness-based Stress Reduction many symptoms you discuss, and read Workbook. I will buy it as a tool to reach more to understand that others know what my goals for better tomorrows with MS. I know and what I might expect in the future. I am grateful for this wonderful So again thank you and, if possible, (Lending Library) program and your please add me to your mailing list. always uplifting spirit. Bob Jacoby, Wilmington, NC Beverly Thomas, Baltimore, Md. If you have any comments or questions for the MSF, they can be emailed to: [email protected] or written to: Editor, MSFocus 6520 N. Andrews Ave., Ft. Lauderdale, FL 33309

MSFocus 5 Spring 2015 By Randall T. Schapiro, M.D., FAAN Managing multiple sclerosis is about disease management, symptom management and, very importantly, about person management. Many times these overlap significantly. Such is the case when thinking about sexuality and MS. In our society, communicating about sexual dysfunction is often very difficult. It is a topic often not well discussed in the physician’s office or even at home, but is of extreme importance to the lives of those with MS. Communication is the key to tackling the important topic of sexuality. This article might be considered “X-rated” and is written without inhibition. It may not be appropriate for a young audience. Multiple sclerosis usually begins in a • Touching young person with the average age of • Looking onset at 30. In a young person, thoughts • Honesty tend to lean toward athletics, body image, • Body language career, friends and sex. With aging, • To want thoughts may evolve toward retirement • To understand and health, but sex remains prominent. • Commitment Multiple sclerosis has an effect on all • To accept aspects of life, and clearly, it affects sexual function and one’s image of These important topics need to be sexuality. Sexuality is an all-encompassing discussed completely between partners. descriptive word that involves aspects of These topics and others may indicate intimacy and sexual function. Under- feelings of rejection, loss of emotional standing intimacy is essential to having control, fear of incontinence, and feelings a successful long-term sexual relationship. of shame and vulnerability. Intimacy includes: Sexual dysfunction is reported in a • Sex – the act significant majority of men with MS and • Love – emotional feelings in about half the women as well. The • Security – caring and being cared for sexual response begins with arousal: • Sensuality – warm and sexy • Increased blood flow to the sexual organs • Relating – at all levels • Intercourse • Erection of cavernous (spongy) tissue • Empathy – understanding of the penis and clitoris • Protecting • Release of nitric oxide in the region • Conversation • Lubrication in women (as erection in men)

MSFocus 6 Spring 2015 Many factors may influence arousal women are different and management including: strategies are different as well. • Mood alterations In males, the major issue may be • Lack of imagery erectile dysfunction. Management of • Social contexts erectile dysfunction has evolved over • Religious/spiritual/philosophical time. Two decades ago, there was little • Neurological problems to be done, but surgeons were able to surgically implant penile prostheses. Beyond arousal, there are many factors They began as rigid rods placed in the influencing sexual function: penis and evolved to inflatable balloons • Dysfunction fluctuates with disease which gave very realistic erections on activity demand. This procedure is not common • Reduced libido (sexual desire) anymore, as medications were discovered • Reduced sensory responsiveness that can produce a very workable erection. • Pain These began as injections and evolved to ® ® ® • Bladder and bowel dysfunction pills such as Viagra , Levitra , and Cialis . • Fatigue In females, a major issue may be • Spasticity and muscle spasms decreased sensation with numbness and • Drugs loss of feeling. Vibrators have become • Relationship discord more commonly available to provide increased stimulation without a lot of • Physician neglect – code of silence energy expenditure. Lack of lubrication • Misconceptions on self-stimulation is another common complaint, and a • Alteration in body image number of water-soluble lubricants have The nondisabled partner may often been developed to treat the problem. have feelings including: There are a number of devices that aid • Resentment in stimulation and increase blood flow in the female genital area, such as the Eros • Guilt device that creates a vacuum that pulls • Despair blood into the clitoris as it stimulates • Loneliness with vibration. For decades, some have • Shame suggested that a frozen bag of peas (left • Anger in the bag) when rubbed gently in the • Misconceptions clitoral region will decrease pain and • Conflicted feelings - Dual role as care - increase sexual sensation at almost no taker and sexual partner cost. All of these psychological factors need Sexual positioning to allow the most to be addressed before looking at physical comfort and function is essential and management of sexual dysfunction to have requires experimentation and potentially a successful, pleasing, and long-term some specific coaching. Bladder manage - sexual relationship. Only then can the ment, fatigue management, and some - physical issues be addressed successfully. times spasticity management may also It is obvious to most that men and be important.

MSFocus 7 Spring 2015 All of the above are really important and realistically, success is likely to issues in sexual functioning but, again, occur and couples will have fun along the most important issue remains the journey. communication. The communication must not only be between partners, but also should be open with the healthcare Randall T. Schapiro, community. This sounds so simple but, M.D., FAAN, is President in practice, seems to be very difficult. of The Schapiro MS Sexual dysfunction issues, while common, Advisory Group, and are not that often discussed. This needs to change for success to occur. Partners clinical professor of have to be kindly honest with themselves neurology (retired) at the and their partner. If approached honestly University of Minnesota

Join us Nov. 5 – 9, 2015 for this unique, four-night fun and sun Nurses’ Accredited Continuing Education Program at Sea aboard Carnival’s Elation ITINERARY sailing from Thursday, Nov. 5 New Orleans, LA - Depart 4 p.m. New Orleans, La. to Cozumel, Mexico. Friday, Nov. 6 Offering eight contact hours of continuing nurses Education Program & Fun Day at Sea education, this program is co-provided by the Saturday, Nov. 7 Cozumel, Mexico International Organization of Multiple Sclerosis Arrive 9 a.m. - Depart 6 p.m. Nurses and Nurse Practitioner Alternatives. Sunday, Nov. 8 In order to participate in our program, your Education Program & Fun Day at Sea reservation must be booked through the MSF at the Monday, Nov. 9 numbers below. New Orleans, LA - Arrive 8 a.m. For more information about prices and stateroom availability, contact Gabriela Aragon at 888-408-4129 or 954-322-1030 or the Multiple Sclerosis Foundation at [email protected].

MSFocus 8 Spring 2015

A Dialogue between a MS Specialist Nurse and Psychologist By Dr. Miriam Franco, MSW, Psy.D. MSCS, and Dorothea “Dottie” Cassidy Pfohl, RN, BS, MSCN Miriam: You know, Dottie, I find where you are in life, when you are whether you have a chronic illness or not, diagnosed, and how long you’ve been it’s helpful to keep in mind that intimacy, living with it. So it can be difficult to from a psychological perspective, simply tease out what is a real adaptation to MS refers to having authentic experiences versus other insecurities you may have with others, whether they are positive or surfacing in your relationships that may negative. Certainly, when you have MS, it be related to other things, such as being complicates things. There are questions a teenager, a young adult, a parent, etc. about disclosing at work and to others, D: Yes and as a healthcare provider, I regarding when and with whom you share find just taking time to deal with the personal information, and how to cope physical impact of MS and developing a with intimacy within various relationships plan of care becomes the primary focus. as your MS progresses. The immediate concern is to deal with Dottie: Yes, we both know that MS signs and symptoms or the diagnosis throws a monkey wrench into normal and consider treatments. But you quickly experiences. First of all, the person with realize, it’s not just the symptoms and MS must grapple with learning about what securing or adjusting to medications that MS is. With this understanding, one must impact their daily lives, but also how MS then consider how to come to terms with is changing relationships as well. their MS, accept it and integrate it into For some people, their clinician may daily life and relationships. Then, there be the only person they share their con - is the process of coming to know oneself cern about the impact of the illness on with MS over time. their immediate daily life. But not all M: I agree It takes most people some people have open lines of communication time to even know what MS is and what with their providers. Over time, how well it means in their life and how they come the person is going to live with MS and to accept it. And then, there’s the question deal with others may depend on having of what is related to my MS and what the proper support at the right time. I isn’t? There’s a certain amount of your life feel strongly that it is wise for the care and energy that you’ll attribute to your provider to consider these needs and MS that requires realistic adaptation. include, or at least offer to include, other But as you know, people have to be careful professionals in the person’s overall care to not over-attribute things to their disease. such as a social worker or a psychologist, And, of course, coming to know yourself and whether they have serious emotional how MS affects your life also depends on problems or not.

MSFocus 13 Spring 2015 M: I agree. If you are only seeing the being too exhausted for sex, I try to medical provider, you are only dealing investigate if their fatigue could be with one part of a person’s needs. Dottie, related to not sleeping well or reflective what are some of the common concerns you of pain, depression, worry, or bladder often hear about MS and relationships? problems that might interfere with intimacy. Then we can work on what to Love and Fatigue do about these symptoms. Getting the D: The big one I hear about all the conversation started can be the first step time is that loved ones or coworkers don’t toward improvement. understand the nature of MS fatigue. M: And mental health professionals can M: I understand that is the most tease out the ramifications of anxiety, common complaint of those with MS shame, and troubles in communicating. about what their care-partners do not So it’s ideal when we work together as a understand. I’ve heard it described as team. You and I both know from experience bone-wearying fatigue. that it takes a team. We can’t leave it all D: I call it bone-crunching fatigue. to the person to figure it out. M: That’s interesting. This has Teams and Peers implications in all areas of life. For D: The importance of peer support is example, being too tired can be confused another key. Regardless of age and severity with being “lazy” or not being interested of the disease, MS support groups can be sexually or emotionally. That can be very helpful. upsetting to others, which can lead to misperceptions and judgments. M: I think peer support is good, but also forming relationships with health D: Yes, and then there’s the concern of care professionals is a place to practice fulfilling roles and expectations either relationship-building with others. I think on the job, with parenting, providing depending on where you are in life, there income, or just disappointing changes in are different concerns with building relationships over time. And of course relationships with MS. For example, there’s the whole impact of changes in younger persons have concerns about dating physical intimacy over time. Worsening and disclosure. It’s difficult to disclose too illness and even normal aging can early or late at work or in new relationships. precipitate problems. People you’re already close to are going M: Well, let’s start with intimacy and to know and they need to support you, so partners. The MS organizations have a good I don’t suggest waiting there. deal of educational materials available D: True. I’ve heard it said that in a about this online. The take-home message group, “you need to hear your own voice,” is communication is essential to cope with so not all groups meet the needs of each changes in sexual intimacy and roles with individual. Too much, too soon may be men and women with MS. frightening. I have worked with people D: Yes. From my standpoint, you become who had distorted images of MS and similar to a detective as an MS nurse. disability, or think of the one person they When someone shares concern for their knew growing up with MS. MS is diagnosed sexual relationship and attributes it to earlier and there are many treatment

MSFocus 14 Spring 2015 options now. There is great promise about easily discussed, particularly with a member minimizing disability, and hopefulness of the opposite sex. Yet, MS can affect for the future. sexual function. So, as an MS nurse, I feel M: MS is not well understood by others. this is an appropriate area to discuss and With new relationships, it can compound offer to coordinate a plan of care which may include referral to other professionals. things. I do find that you need to be a There are many psychologists and social good judge of character regarding to workers skilled in helping individuals whom you disclose. If unsure at work, and couples explore how MS may be contact the MS organizations – like MSF, affecting sexual intimacy and how to cope MSAA and NMSS – to learn more or look with it. The major MS organizations have into discussing the issue with an advocate. referral resources for health professionals As a general rule of thumb, I find it is who know how to explore this and provide important to not tell others too much, too resources to improve sexual functioning soon until you can judge character or there and intimacy. Many things can be done is a realistic need to tell. Typically, others to improve sexual functioning. Often need to develop a context of knowing you just having an open conversation can be and then knowing you with MS. However, therapeutic. Then again, encouraging there is no one size that fits all. communication with a par tner is important Sexual Intimacy too. M: Dottie, you know that MS can affect M: Yes, there are issues of sexual sexual functioning in men and women. functioning that are directly related to There are many things that can help with MS symptoms and many of these can be this, but I find the biggest barrier here is improved by working with knowledgeable communication. It’s hard to talk about this. professionals. Then, there are issues regarding attitudes and negative D: It is hard and the healthcare provider associations with sexuality that are not may not have the time to do so, or may directly related to MS symptoms. So again, convey discomfort with discussing sex so working with a mental health professional the patient won’t bring it up. Cultural who can distinguish these things and help changes have made discussing sex less individuals and couples cope can go a taboo. Nonetheless, it is important to be long way in improving quality of life and aware that for some, such things are not building relationships. Dr. Miriam Franco, MSW, Psy.D., MSCS, is a professor of Sociology at Immaculata University and a clinical psychologist. She is a certified MS Specialist and has published two research studies on the use of Guided Imagery to lower anxiety and injection anxiety with multiple sclerosis. She is on the Health Care Advisory Board of the Multiple Sclerosis Association of America and is Health Partner with the National MS Society. Dorothea “Dottie” Cassidy Pfohl RN, BS, MSCN, although now retired from full-time work, serves as a resource for the MS Society as a member of the health care advisory committee and the highly successful program, ‘WAMS’ – Women Against MS. She has served as clinical coordinator of the Comprehensive MS Center of the Department of Neurology at the University of Pennsylvania Health System.

MSFocus 15 Spring 2015 By Laura McCatty, RN, BSN, MSCN and Mark McCatty Having good relationships, especially misunderstandings. This helps to establish with those closest to us, is essential for and maintain a clear understanding about good physical and mental health. A lack of expectations. strong, intimate relationships is associated This is especially true when partners with depression, cognitive decline, and are dealing with a disease as gripping as increased mortality. A study of the general MS. This unwanted partner in a relationship population found that a lack of strong shows up at unexpected times. It can relationships increased the risk of change plans at a moment’s notice. The premature death roughly comparable to fact that one “looks so good” outwardly can smoking up to 15 cigarettes a day. bring misunderstandings to relationships. Positive personal relationships have It is helpful to talk about these issues in a high trust component. Now, that does advance with the well partner and how not mean that every decision or action by best to manage when these situations the other person is considered favorable arise. by both partners; however, each partner Intimacy can bring anxiety. Intimacy should believe that no ill intent is does not have to mean the sexual act meant. Consider the other when making itself. Talk about what helps each feel decisions and taking actions. In positive loved. Some people avoid intimate relationships, there is consistent collab - relationships because they fear the oration toward common goals. There is a unexpected may occur. It helps to think willingness to be open and vulnerable through what is the worst that would and to admit when mistakes are made. occur, and then plan how to manage. Life sometimes throws challenges into MS can cause issues such as decreased the mix. We experience stress from daily sensation, pain, spasms and erectile demands and limitations on our abilities, dysfunction. Fatigue, depression, and and multiple sclerosis only makes matters decreased libido can cause intimacy to worse. We can become angry and irritated become a stranger. There are some simple with the ones we love. Anger is a secondary tips. Consider sex at a time of day that is emotion coming from three main sources: best for both, perhaps the morning. Try hurt, fear, or missed expectations. So, if we something different to soothe pain such want to continue to experience positive as medications or a “bag of frozen peas,” relationships, we should avoid causing which Randy Schapiro, M.D. mentions can others pain or fear. A first step can be be helpful. To increase sensation, take developing open communication to avoid the time to have fun to warm up for love.

MSFocus 16 Spring 2015 Make an appointment for love hours before “Don’t forget to look at each other the event to get your brain engaged and often as though it were the first or last excited. Turn on your music to feel sexy, time.” Corrine De Winter. set the mood, and utilize sex toys or vibrators. Take this uninterrupted time, Like most good things in life, intimacy and if it doesn’t turn out perfectly, try does not happen accidentally. Make it a something different next time. Laugh at priority and plan to develop and nurture yourselves and don’t give up. intimacy. There are a few simple steps that anyone can take to improve the Although it can be difficult, many are quality of relationships. The steps may going through similar issues. Identify be simple, but they are not easy. These the goals you share. Formulate a plan. steps require time and effort, which are Keep working on your goals together. not always easy unless it becomes a Although it can be embarrassing, make a priority. Here are five steps to take: specific appointment to discuss solutions with your MS specialized health 1. Promote time together as a priority. professional. You are worth it! It is easy to become distracted by daily demands and lose our connection with When trying to maintain positive, those important to us. Be intentional intimate relationships, it is important to about spending quality time with each understand what the definition of intimacy other without distractions. It is as simple is for each partner. Each of us may as going out for coffee or sitting closely experience that special closeness to watch a favorite movie together. differently from our partner. Perhaps it’s Sometimes it means just sitting quietly holding each other with gentle caresses, to really listen when the other person 20-second hugs throughout the day, or is ready to talk. Make an appointment even doing the dishes. Human touch is or “date” with each other. so important, especially in a loving 2. Nurture open and positive commun- relationship. ication. Jack Burks, M.D., a noted In his book, The Five Love Languages, authority on MS, speaks about the Gary Chapman describes how each of importance of “framing the discussion” us feels love (and intimacy). when having conversations with your A key for keeping relationships healthcare team. The value from this intimate is to understand the language frank conversation is to clarify expec - that your partner “speaks” when they tations for all parties involved. This show love. It is the same language that conversation model is equally important they “listen” for to receive for personal relationships. Openly discuss loving gestures. The book, challenges and concerns in a positive The Five Love Languages, way. This provides opportunities to speaks about how you give make adjustments that keep every one working on the relationship. Greater and receive love: words of insight into the other person, stronger affirmation, quality time, relationships, and progress toward receiving gifts, acts of common goals are the positive outcomes service, and physical touch. from this type of communication.

MSFocus 17 Spring 2015 3. Celebrate your differences. Each of “Oh, the comfort, the inexpressible us is different; yet, when we think back, comfort of feeling safe with a person, that was probably one of the things that having neither to weigh thoughts nor attracted us in the beginning. Over measure words, but pouring them all time, those differences can become an right out, just as they are, chaff and annoyance. It is important to remind grain together; certain that a faithful ourselves that strong relationships hand will take and sift them, keep succeed because of our combined what is worth keeping, and then with a strengths. Each person brings a set breath of kindness blow the rest away.” of talents to the relationship. It is Dinah Maria Mulock Craik . important to acknowledge those differences and learn how to use them committed and intentional about for the benefit of both. spending quality time together, developing a practice of sharing quality 4. Stimulate romance in your communication, appreciating our relationship. Like the old song goes, differences, and making romance a “little things mean a lot.” Romance does priority can lighten the burdens that not have to be a big event. Breaking daily life brings. This may not be the out of daily routine can be exciting cure for a disease like MS, but it can and romantic. Understanding and make those symptoms easier to tolerate speaking the love language of your when one feels loved. partner is important. What can I do to Keeping the love in your life is good make hi m/ her feel loved? for your health – mind, body, and spirit. 5. Forgive ourselves. Forgive others. We benefit from having someone support Another key to intimacy lies in our us during hard times, and share our joy ability to give each other grace by in the good. It can be difficult holding on letting the human tendency to err slip to intimacy in a relationship. It does through our fingers like sand. When take effort. You get tremendous value. we lose intimacy, it’s easy to develop a The delight and the comfort from your negative image of our partner. Let relationship is worth the effort. Make it those negative thoughts go. Being a priority!

Laura McCatty is an MS-certified registered nurse with 14 years of experience helping people with MS. Her passion is to educate people about living well with MS. Mark McCatty is an organizational development consultant/trainer with extensive experience in operations management. His leadership and organizational development consulting has helped numerous organizations meet the challenges of creating high-involvement work environments. Both Laura and Mark are past presenters for the MSF Cruise for a Cause ®.

MSFocus 18 Spring 2015 Neuroscience research shows us that date night can, in fact, help keep a relationship fresh and rewarding, but if and only if you go about it in the right way. The key here is novelty – you and your beloved must engage in fun, exciting, and new experiences so you can get the dopamine and nor- epinephrine flowing and reward your brain. Remember when you first fell in love? Dopamine and norepinephrine were a big factor. 2) Give each other a massage, but gently please. Researchers at Cedars- Sinai Medical Center in Los Angeles measured hormone levels in the blood of 53 healthy adults as they enjoyed 45 By Gay Falkowski minutes of massage. In this experiment, While asking your doctor to treat the group was divided in two: about sexual problems related to MS is important, half were treated to a deep tissue it’s also helpful to know there are steps Swedish massage, while the other you can take outside of the bedroom or half had a light massage. Interestingly, the doctor’s office to increase intimacy those who received a lighter massage between you and your loved one. experienced greater increases in In the last decade, research has shown oxytocin than those who had a deep us the “chemistry” that happens in our tissue Swedish massage. brains when we fall in love and bond with 3) Enjoy a music night. Listening to our significant other. Often referred to as your favorite melodies and harmonies the “love molecule,” oxytocin (a hormone) can trigger the brain to release large is typically associated with helping couples amounts of dopamine, a chemical that establish a greater sense of intimacy and sends “feel good” signals to the rest of attachment. Oxytocin, along with dopamine the body and plays a role in both and norepinephrine, are believed to be motivation and addiction. The small highly critical in couple bonding. study, published in Nature Neuroscience, We have learned more as well about used brain scans to show that college how activities other than sex can release students released significantly more brain chemicals that make us feel more dopamine when they heard their connected to our mate. Here are six of preferred music (which ranged from them to consider: Beethoven to Led Zeppelin to the Israeli 1) Explore a new place or activity trance band Infected Mushroom) as together. Lots of relationship experts opposed to someone else's tunes. suggest that couples that have been 4) Dance to your favorite songs . together a long time can keep the There’s nothing quite like partnered romance alive with regular date nights. dancing to get your oxytocin fix,

MSFocus 19 Spring 2015 according to Paul Zak, Ph.D., professor have shown that hugging for 20 seconds of economic psychology and management raises levels of oxytocin. A hug re- at Claremont Graduate University. In establishes the intimate connection one experiment, Dr. Zak drew the blood and trust between you and your partner of dancers before and after a night of on a fundamental hormonal level. dancing. He found that the oxytocin 6) Watch a tearjerker of a movie levels of the dancers rose 11 percent, together. Seeing a powerful movie is regardless of age or gender. This finding the best oxytocin releaser Dr. Zak has and more about oxytocin are included found to date. Here’s some context: in his book, The Moral Molecule . When oxytocin is increased by 10 to 5) Hug at least eight times a day. 20 percent, noticeable behavior Tiffany Field, Ph.D., Director of the changes — like feeling more relaxed University of Miami Medical School’s — result. Watching an emotionally Touch Research institute says, “The compelling movie makes oxytocin gentle pressure of a hug can stimulate surge 47 percent. Why? “Our brains nerve endings under the skin that process the plot and characters as if send calming messages to the brain and they were in the room with us,” Dr. slow the release of cortisol.” Studies Zak says. Gay Falkowski is the former Managing Editor of MSFocus and editorial coordinator for MSF’s publications. Having relocated to Dallas, Texas, to enjoy time with her family, Gay continues to freelance for the MSF, writing articles for the magazine and exclusive content for the new website, www.MSFocusMagazine.org. Fashionably Cool LIGHTWEIGHT • DISCREET • COMFORTABLE

“I live in the desert. Anyone with MS can relate that each summer month gets more difficult to manage. So I finally broke down and decided to get a Polar fashion cooling vest... Boy, am I glad I did! I was pleasantly surprised how discreet the cooling inserts were and how much better I felt afterward. Trust me - it won’t cramp your style! Don’t put it off. You’ll love it.” - Terri in CA

Polar’s Fashion Cooling Vests for Men and Women are available in Khaki or Black in sizes Small - XXXL with your choice of Kool Max® Packs or Cool58® Packs. Decide which is best for you at www.polarproducts.com.

PolarProducts POLAR Products since 1984 1.800.763.8423 • www.polarproducts.com @PolarProducts Polar Products is a leading worldwide manufacturer of body cooling systems for MS and a proud supplier for the MSF Cooling Program!

MSFocus 20 Spring 2015 By George Foreman III and Mary McAlary Authors Help Patients Strike a Blow Against MS

short book also covers food. It includes five recipes at the end. The fight serves as a central theme of the book and is the frame upon which George Foreman III and Mary McAlary the narrative hangs. Two other themes join forces to tell a story of struggle and that emerge are the importance of lifestyle triumph in The Fighting Spirit: The Art and community when struggling with of Winning Your Fight. A professional multiple sclerosis. The value that unites fighter in his own right, Foreman is the son and underpins the book’s themes is of the legendary boxer and the founder personal responsibility. McAlary tells a of The Club, a fitness facility in Boston. very personal tale that reveals how being McAlary is a certified holistic health coach, confronted with choices offered her a former real estate agent, a wife, mother, liberation. Her family members, especially and grandmother of four. The two met her oldest daughter, and her doctor formed in Foreman’s club and eventually came the team that has gotten her where she together to collaborate on a short, punchy is now, which is much more functional book that delves into McAlary’s fight than when she was first diagnosed with with MS. the disease. At 100 pages, the book is a two-day The book does a good job in offering a read filled with practical information. It strong story meant to inspire the reader is built around 12 Fight Laws which are to join the fight against MS and take meant to echo the 12 rounds of boxing. control of their response to the disease. Several chapters include Feed the Fight Find the interview with the authors on sections that offer tips or sources of MSFocusRadio.org on Thursday, May 21 information of use to the reader. This at noon, with replays at 3 p.m. and 8 p.m. To borrow this and other titles, call the MSF Lending Library at 888-MSFocus (673-6287) or visit www.msfocus.org. Click on ‘Lending Library’ under the Programs and Activities heading.

MSFocus 21 Spring 2015

Sailing to New Horizons

By Gay Falkowski

experiences they have will change their lives for the better. And so the stage is set for another fantastic adventure as a group of about 150 participants board Royal Caribbean’s Adventure of the Seas on Feb. 1 for the 14th annual MSF Cruise for a Cause, a 7-day journey to the Southern Caribbean. The itinerary calls for stops in Charlotte Amalie, St. Thomas; Basseterre, St. Kitts; Oranjestad, Aruba; and Willemstad, Curacao. During days at sea, MSF cruisers Kick…Kick…Kick…KICK! learn about better living with MS from Cindy Brenden tells herself to try harder two of the country’s most esteemed MS as she struggles to keep her head above neurologists – Ben Thrower, M.D. and water. Thoughts flash back to happy days Randall T. Schapiro, M.D. diving and fishing with dad. Life was easy then, without MS. But, even after decades Hello My Name Is ______of living with this frustrating disease, Registration in the ship’s spacious Cindy’s a fighter. She’s tired, yet determined conference room the first evening is like to get kissed by a dolphin in Curacao, the an annual family reunion. There’s so much last stop on the MSF Cruise for a Cause ®. catching up to do! MS may be the common One strong kick puts her in perfect position. bond among these travelers, but it doesn’t There it is! A peck on the cheek! Cindy’s always dominate their conversations. going home with a memory likely to inspire Karma Threet, a her long after this cruise has ended. second-time attendee As Cindy and others have discovered, with her husband, the MSF Cruise for a Cause is all about Toby, talked about a MEE – Motivating, Educating, and Music for Healing and Empowering. Yet, many participants arrive Transition Program on the ship unaware that the people they she enrolled in to meet, the information they learn, and the become a Certified

MSFocus 26 Spring 2015 Music Practitioner. Retired from nursing because of MS, Karma continues caring for people who are ill or dying by playing her harp for them at bedside. “You’re not trying to cure,” she explains. “You’re trying to provide peace and comfort.” Veteran MSF cruisers Betty and Gail Gibson have years ago get ready for a fun first night. been busy traveling, There’s Sharla LaFountain, Jackie Connell, enjoying their hobbies Rhonda “Buckeye” Mason, and Denise Rios. (hippotherapy for Denise is bursting with important news: Betty and archery for “I got a new dog,” she says. “And a man Gail), and having came with it.” fun with neighbors Ray Petro and Denise in the Villages, Fla. met on a dating website They’re happy to see that friends Kerry for singles with disabil - and Ed Buckley, also veteran cruisers, ities and, after months made it out of New York and into San Juan of commuting across the before a massive state, decided to live snowstorm hit. “It together in Melbourne, was close,” says Fla. Though she enjoys Kerry. “We’re just her gal pals, having Ray glad to be here.” with her on the cruise means so much to So are others who Denise. Years ago, as she and her husband came from the were planning their first cruise with the cold. Sunshine and MSF, he passed away. The next year Denise the tropics ahead! cruised solo with the MSF, and has been First-time attendee Mary Montgomery a regular ever since. “It wasn’t easy at first, is less enthusiastic. She reluctantly came but I didn’t want to stop doing things,” along with daughter Julianne Carter, who she says. Ray speaks affectionately of Denise was diagnosed with MS last year. Mom and is happy to be along for the cruise. and daughter don’t He wants others with disabilities to know always agree on there’s always hope for romance. Love is what’s best for in the air! Julianne. “I wasn’t Attention…This is Your crazy about this Captain Speaking idea,” she says, looking around Between announcements over the loud speakers and the Daily Compass itinerary the room. It’s still delivered to staterooms, travelers know early though. when and where to find fun – a Beatles Over by the registration tables, women tribute show, a ’70s dance party, formal who bonded during an MSF cruise many nights, trivia contests, game shows,

MSFocus 27 Spring 2015 “dreaded” travel from Kentucky, she’s ready for some fun. “I’ve had a fear of traveling in a chair,” she says. “All of my fears came true, but I made it. ” Empowering. karaoke, live bands, a piano bar, food, food, and more food. There’s something for everyone! Our first stop is in Charlotte Amalie, St. Thomas, but not everyone gets off the ship. Relaxing by the pools is a great alternative to sightseeing. Cherie Binns, an MS-certified nurse and long-time friend of the MSF, enjoys a peaceful morning on Adventure of the Seas while husband, While shopping on St. Thomas is a David, explores the island. popular pastime, those venturing beyond She’s heading to the rows of stores by the pier find an island ship’s spa for a nice, of tropical charm, including the world- famous beach and turquoise waters of long massage…ahhh . Magens Bay. A few explore the nearby (During the educational programs, island of St. John, known for its massage therapist Martha Rojas offers unspoiled beauty. MSF cruisers complementary 15-minute massages.) I Get By With a Little Help The need to slow down from My Friends was motivation for Ingrid As the ship sails away from St. Thomas, Philpott to join the cruise. MSers gather for a support group meeting “It’s been a hectic month. I led by MSF Ambassador and MSF-affiliated needed time to relax, to support group leader Nick Marchesani. breathe,” she says. Even so, Loved ones meet separately in a caregiver’s she’s disembarking in St. session led by MSF Director of Programs Thomas to connect with and Services Natalie Blake. family that lives there. In fact, she’ll be Kathy and David Brandstad are eager visiting family in every port but Aruba! to connect with others. After their support Others, including first time participants group at home disbanded, they didn’t Mindy and Jeff Beach, can’t wait to shop socialize much. Kathy, who has a doctorate on St. Thomas. Having survived the in clinical psychology, realized she

MSFocus 28 Spring 2015 was isolating herself. on balance and exercise, Nick shares “Meeting people who how he kicks MS to the curb with spunk have the same situation and strength. Turn up the volume! as we do – that was a “We’re beatin’ MS now because we’re big reason we came not stayin’ home. We’re getting’ out!” he here. We’re looking shouts. “Woo-Hoo!” the audience members forward to the social holler. Motivating. opportunities,” David says. After a morning dose of Nick’s high energy, who doesn’t want to explore the Spoiler alert: Kathy’s island of St. Kitts? Jagged volcanoes soaring kooky pepperoni pizza above turquoise seas, dense rainforests hat wins an iPad in the in many shades of green, rolling fields of crazy hat contest at sugarcane – this is the island’s landscape. the farewell party. Now that’s being social! Like the Brandstads, Mary and Paul Wild, from Chicago, wanted to travel with others who understand MS. “Traveling with MS can be pretty challenging. But I knew there would be other people here like me, and if I had problems there would be people here to ask what to do,” Mary says. She’s right. Support is everywhere on the MSF cruise, and no one’s a bigger Brimstone Hill Fortress, called the cheerleader for overcoming MS than “Gibraltar of the West Indies,” is one of certified Zumba in Chairs instructor Nick the most popular sightseeing tours. And Marchesani. In daily morning sessions then there’s shopping. Batik, anyone? Get With the Program – the Educational Program! At the educational programs, MS doctors and healthcare professionals share the latest updates on disease treatments and research, answer questions, and connect personally with many of the participants. And sometimes those connections happen in the strangest places.

MSFocus 29 Spring 2015 for the past 43 years, remembers when patients had few choices to make because there was no knowledge about the disease. “I didn’t know what I didn’t know,” he says. Though knowledge of MS has grown, his motto remains the same: “Live it up!” That’s what this cruise is all about. Living it up in the Southern Caribbean Netsey Pisani recalls relaxing on a Caribbean beach several years ago, Melinda Warren of soaking up the sun and arguing with Gainesville, Fla., had never daughter, Brooke, about taking her MS been to the Southern treatment shots. A man sitting next to Caribbean. Recently retired them chimed in, “Well, if you were my from a 35-year nursing patient….” And that’s how Brooke Pisani career, she was easing into met the doctor who would take charge of a new lifestyle when an her MS care – Dr. Ben Thrower. The MSF cruise advertisement drive from the Pisani’s home in New caught her eye. “Aruba? Curacao? Sign me Iberia, La., to Dr. Thrower’s Atlanta up!” Since her husband had to work, office is 10 hours, but “worth it” the Melinda brought her son, Zach, along on Pisanis say. the cruise. “We’re having some quality mother and son time,” she says. Dr. Randall Schapiro’s legacy lives on in the On a sunny, breezy day, mother and hometown of Kathy and son are happy to be on the “See and Sea” Jeff Parker through The excursion as they explore Aruba. About Schapiro Center for a dozen others from the MSF cruise are Multiple Sclerosis at the among the group, enjoying the camaraderie. Minneapolis Clinic of California Lighthouse, Casibari Neurology. So, they’re Rock Formations, and a natural thrilled to meet Dr. bridge formed by wind and Schapiro and hear him waves. After a short boat ride, speak. Kathy always looks forward to the programs. “You gain so much knowledge. Every time I come away with a better way of dealing with something,” she says. Educating. Former nurse practitioner William Atkinson, who has been living with MS

MSFocus 30 Spring 2015 So Long, Farewell The end always comes too quickly! Still, the mood is festive in the Imperial Lounge for MSF Happy Hour. It’s time to exchange contact info, enjoy some complimentary cocktails and hors d’oeuvres, judge crazy hats, and share some good memories. they board a semi-submarine that lets them view a shipwreck and marine life as they sit in air-conditioned comfort five feet below the water’s surface.

“The thing I’ve enjoyed most is meeting people who are in the same situation I’m in, and talking with them about how they handle things,” says Julianne. Her Next up, Curacao. While some opt for mom Mary admits that despite her early island tours, many MSF cruisers enjoy doubts, she really enjoyed the cruise. “It rolling or strolling across the Queen Emma was much better than I expected,” she Bridge (aka “The Swinging Old Lady”), a says with a smile. What did she like floating pontoon bridge that links the most? “Seeing Julianne enjoy herself. two sides of Willemstad. The capital’s She doesn’t get much of that anymore.” Dutch-influenced architecture makes a great backdrop for photos, as MSF staff member Sean Giblin and his parents, Robin and Debra Giblin, discover as they make their way back to the cruise After presenting Drs. Thrower and ship. No need to Schapiro awards of appreciation, MSF tell Sean to smile, Co-Executive Director Alan Segaloff as he always does recognized and thanked participants – camera or no whose generous donations have made camera. this cruise possible for others: Kathy

MSFocus 31 Spring 2015 With the party winding down, attention turns to the 2016 MSF Cruise for a Cause to Alaska. Gabriela Aragon of Aragon Travel announced that about a third of our group is Alaska-bound and many more are ready to commit. The Beaches say they can’t wait! Chances are good Mindy will leave the ice fishing and Jeff Parker, and Carol Cetrino. The to Jeff, though. Rhonda Mason is excited, Parkers say it’s rewarding to know their too. She says – with a twinkle in her eye donation allows others to experience an – that next time she just may bring a MSF cruise. As for Carol, she was once new travel companion. We’ll keep you on the receiving end of a cruise donation. posted! Now that her financial situation has improved, “It’s my turn to pay it forward,” To be continued in Alaska 2016. she says.

Explore some of the most exciting and scenic areas in North America onboard Celebrity Cruise Line’s Solstice while attending one of our many motivating, educating, and empowering programs presented by MS experts. Take the opportunity to visit with old friends and make new ones as we navigate the Tracy Arm Fjord. See the Alaskan wildlife as we visit Juneau. In Skagway, take a ride on the White Pass and Yukon Route Railway. Stroll through Ketchikan, Alaska’s first city and the salmon capital of the world. Book early to assure a statroom of choice. For more information or to make a reservation, contact Gabriela Aragon at 888-408-4129 or 954-322-1030 In order to participate in the Multiple Sclerosis Foundation’s program aboard the ship, your stateroom must book through the MSF at the above numbers.

MSFocus 32 Spring 2015 Facebook Feedback is your chance to share your experiences related to topics covered in the MSFocus. “Like” our Facebook page at www.facebook.com/MultipleSclerosisFoundation and watch for our next Facebook Feedback post.

Our question for this edition was: “What MS challege to intimacy have you faced and or overcome?”

Akia Well, when I was first diagnosed, I with the different ones on the market. Some had very painful muscle spasms that came are hot, some are cold, others are....well, like seizures only on my left side. I couldn't go get your own and read the box! LOL! have sex with my boyfriend because of Kelly About six years into my diagnosis, I this. It was horrible; I was no longer close could no longer support myself on top of to my boyfriend of three years. Since then, my husband, so we've adapted to him I moved and got better treatment and don't either being on top or both of us on our have muscle spasms when I have sex. sides, facing one another. He's pleased Lisa My husband is too kind; he's always and I'm pleased that he never complains! afraid that he will hurt me, or that he's Nicki I have two main issues: dryness preventing me from getting sleep. AND hyper-sensitivity! My man and I try to Susan I am numb on my right side from laugh at the fact that I will "flop like a blue my scalp to my foot, so half of my lady gill" when touched in certain spots, area is as well. Due to experimentation depending on the type of touch as well. and exploration of the numb areas, great (And yes, the vagina can be one of those sex is still possible with a patient partner! hyper-sensitive places.) Oh joy! Ebonie The only problem I am having is Peggy For me, it's just the pure exhaustion severe dryness. We have to use lube now. when I go to bed. I go to bed too late anyway James Sara To tell you the truth, I’d have and don't get enough sleep, but I am very to say dryness is the issue. It’s a headache territorial with my sleep time and don't to really want to in your head but your body want to share it, even if sex is the alternative! just won't comply! LOL. On the other hand, Also, if I fall asleep early in the evening, since we have to use a lube most times, it trying to rouse me is like placing two sticks has opened up the door to experimenting of TNT in each ear.

Connect with us. Share your thoughts and insights with the MS community on our Facebook pages. Like us at www.facebook.com/MultipleSclerosisFoundation and www.facebook.com/groups/msfocus.

MSFocus 33 Summer 2014

By Dan Digmann and Jennifer Digmann, MA

For most people living with multiple Technically, it wasn’t the MS that sclerosis, it’s easy to talk about the day interfered with our passionate kisses. It you were diagnosed, symptoms leading up was that pesky MS-induced trigeminal to your diagnosis, and experiences you’ve neuralgia, a relentlessly painful irritation had with disease-modifying medicines. of the trigeminal nerve that Jennifer But the conversation can get quite was experiencing. While only a small complicated when questions are asked percentage of people with MS have TN, about intimacy and MS. Suddenly your those who get it experience it in a very comfort zone is compromised and the big way. discussion is getting too personal. It’s Jennifer couldn’t brush her teeth too close, too intimate. No longer is the without pain, eat sweets without wincing, discussion focused on your individual or sleep soundly without being awakened stories. There’s another person – such as by a violent sensation of electricity a spouse, partner, or significant other – running through her right cheek and involved in your MS experience. molars. Oh yeah, and kissing Dan was Perhaps it’s more accurate to say the about as comfortable as chewing on conversation about intimacy and MS is aluminum foil. two personal. It’s two close, two intimate. Just like that, the kissing instantly Dictionary.com defines intimacy as, “A stopped in a married life where we were close, familiar, and usually affectionate or madly in love. That is, until after Jennifer loving personal relationship with another underwent gamma-knife surgery to remedy the TN. But never once did Dan person or group.” It’s a term that is easily fear there was trouble in paradise or that defined, but often MS and its related issues Jennifer no longer loved him. Honesty, can interfere with the simplest things in empathy, listening and patience were life – even kissing. keys to weathering this, and every other We barely kissed on the lips during the storm that MS brewed up in the intimate first eight months of 2014, but we had atmosphere of a close relationship. never felt closer to each other than we did We no longer could kiss on the lips, for those 242 passionately kissless days. but we soon found new ways to express It wasn’t as if distance was keeping intimate feelings for each other. Tighter us apart. We lived, ate, slept, and spent and extended hugs, falling asleep while time together the same as any married holding hands, and Dan’s gentle kisses on couple of nine years. But we are living with Jennifer’s forehead were the expressions something that not every other couple of love that sustained us. These simple lives with – we both have MS. and meaningful acts actually pulled us

MSFocus 37 Spring 2015 closer together emotionally than we Jennifer no longer imagined was ever possible. Maybe it can stand on her own, was because each act was rooted in the but we still go dancing. shared understanding that we are She stays seated in her strongest when we’re together in our chair, but we’re holding fight with MS. hands the entire time Kissing Denied. Intimacy Redefined. we boogie — always connected. These are opportunities that everyone living with MS has: take control and When we’re at the baseball game and give new definitions to all that once was the seventh inning stretch comes around, familiar about intimacy. Dan helps Jennifer stand as we sing Take Me Out to the Ballgame in a never The reality is that intimacy was part ending embrace. Such a show of love would of our relationship less than four hours seem ripe for receiving after we first met. We actually were a citation for a public introduced to each other at an MS-related display of affection. But event 12 years ago. We made an instant we own this intimate connection as two younger people living moment, and nobody with this chronic disease. And when ever will dare take it Jennifer needed her mother’s assistance away. to use the restroom, it wasn’t weird or creepy when Dan offered to help with the Notice we haven’t yet mentioned wheelchair transfers. It was a comfortable anything about sex. Sure, it’s one of the and kind gesture toward a newfound elements of intimacy in our marriage. friend in need. But there’s more to intimacy than that, and like everything else, we’ve redefined MS can create physical barriers, such that to make it our own in light of the as Jennifer’s wheelchair and Dan’s disease we share. fatigue, but we’ve learned throughout our marriage that nearly everything is As we said before, honesty, empathy, possible when it comes to maintaining listening, and patience are keys to an intimate relationship. It’s all about weathering the storm that MS brews up transforming the ideas of intimacy and in the intimate atmosphere of a close making them your own. relationship. Combined, Jennifer and Dan Digmann have lived with MS for more than 30 years. Jennifer was diagnosed in 1997 and has secondary progressive MS, and Dan was diagnosed in 2000 with relapsing-remitting. They met at an MS-related event in 2002, fell in love, and got married on Sept. 10, 2005. They have been living happily ever after in Michigan. They are MS activists and regularly present as guest speakers at events nationwide. They wrote the book Despite MS, to Spite MS, and their story is featured in the book written by Ronda Giangreco and Jeanne Lassard, A Dose of Devotion: How Couples Living With Multiple Sclerosis Keep Their Love Strong.

MSFocus 38 Winter 2015 “Team FearlessMS: Advocates Unite!” was our theme for the 2015 National MS Education and Awareness Month ® in March. Members of our staff brought the message of community building from coast to coast, visiting cities and towns across the country. The purpose of the MSF’s programs was to help members of the MS community build advocacy skills and connect with others in their community who share their interest in the MS cause. This year’s awareness month initiative invited you to stand up for your rights as a patient and reach out to your legislators, helping you become an advocate for MS. We spread the MSF message by distributing thousands of awareness kits, hosting educational and awareness events, and presenting several teleconferences. We also asked you to participate in our MS Superhero Contest. Find out who was named our MS Superhero, Advocate of Caliber, and Captain Healthcare in our summer issue. If you did not order a 2015 National Multiple Sclerosis Education and Awareness Month ® kit, you can access the information at MSFocus.org. The MSF, as part of the MS Coalition, lobbied congressional aides on Capitol Hill on three issues which included the Advancing Research for Neurological Diseases Act of 2015 (H.R. 292 in the House, and S.849 in the Senate), which would direct the Centers for Disease Control and Prevention to collect information on MS. Our teleconferences brought MS experts into homes across the nation with one quick phone call or Internet connection. If you missed them, don’t worry, you can find audio recordings of most of the teleconferences by going to our website at www.msfocus.org and clicking On Demand Audio. Here is the selection of March teleconferences: Thank You “Adapting Your Home to to the following companies for Living with MS” providing support for the MSF’s 2015 with Carol Siebert, MS, OTR /L, FAOTA National MS Education and Awareness Month ® activities “MS Updates-2015” with with Ben Thrower, M.D. “Navigating the World of Managed Care” with Thomas Barsanti, M.D. (This teleconference is not available online) “How to Appeal When Your Medical Claim is Denied” with National Patient Advocate Jeri Francoeur.

MSFocus 39 Winter 2015 The MSF staff was in high gear throughout the month of March, bringing fun and informative programs to MS communities across the country. This year’s stops included St. George, Utah; Las Vegas; Atlanta; Los Angeles; Sayre, Pa.; Joplin, Mo.; Westminster, Colo.; Newport News, Va.; Tampa, Fla.; and Iselin, N.J. Most of this year’s presentations cityscape in the middle of the desert, were provided by Multiple Sclerosis provided an intimate setting for the Foundation staff members and focused MSF’s first visit to Utah. On March 4, in on advocacy. People with MS wanting to the Best Western Abbey Inn, problems make a difference learned there is strength with insurance stood out as a local issue. in numbers, and that small interventions Attendees included veterans of the can lead to building something new and disability civil rights movement. MSF- better. Attendees enjoyed the opportunity affiliated support group leader Darlene to connect with others, brainstorm and Trotsky greeted people and introduced share ideas. herself to the crowd, informing them of upcoming events. Problems with municipal transportation and local ADA compliance were nearly Las Vegas universal themes among attendees this At the end of a world-famous stretch year. They also noted their interest in MSF of streets, marked by flashing lights and programs, and the ongoing tall buildings, with people moving in every #Orange4MSF campaign possible direction, large-screen TVs, and proved to be a big hit. an assault on every one of your senses at This year’s awareness every moment, 100 people packed the house month events provided the on March 5 at Fogo de Chão Brazilian opportunity to build a Steakhouse. Four MSF-affiliated support stronger MS community, groups were represented at the event along helped fill the need for with their leaders. Also in attendance was people with MS to interact with those who Gina Brown, who works for the city of can understand their experiences, and Las Vegas, who also has MS. She offered aided them in becoming their strongest supporters in their journey through life with MS. St. George, Utah A brisk, sunny day under a snow-capped mountain, with red rocks lining a small

MSFocus 40 Spring 2015 helpful information about approaching MS, caregivers and family members. It local lawmakers to event attendees. A generated enthusiasm for the creation of big local issue was the lack of health and an action group to address a dispute with wellness programs for people with MS. The a managed care agency regarding the lack of regulatory clarity on handicapped merits of the continued use of an MS drug parking was another salient point for after it allows patients to become stable. the audience. The process of appealing an Participants kindled a desire to seek others insurance ruling also featured prominently. willing to advocate with them. MSF staff Atlanta took the opportunity to talk about CDC registry legislation working its way through the U.S. House of Representatives and MSF Ambassador Jodi Cooley encouraged support for it. Sayre, Pa. Newly fallen snow over the rural community of country homes did not It was a clear, warm day for the more deter the nearly 30 people who attended than 40 people who attended the March the event on March 18, at the Best 10 event at the Sheraton Perimeter North Western Grand Victorian Inn. For those Hotel. In some cases, attendees drove an in attendance, accessibility and parking hour to get to the event and there were were major concerns. Being persistent in both new and familiar faces in the crowd. following through on ADA complaints Housing and homecare were significant was an important lesson during the local advocacy issues for those who gathering. On the problem of parking, attended the event. After a question and questions arose regarding who had access answer session, MSF Ambassador Ashli to the handicapped spaces and concerns Hopson, left in photo, took the opportunity about them being located too far away to address the audience. She drove home from facility entrances. MSF-affiliated the purpose and benefits of the MSF and support group leader Pam Secrist and her role as an ambassador. MSF Ambassador Ariana Deming were Los Angeles on hand to help make the proceedings memorable. With lovely weather accenting scenic green rolling hills, the Lake House Restaurant hosted a crowd of about 30 on March 12 that included those with

MSFocus 41 Spring 2015 Joplin, Mo. Newport News, Va. Unafraid to show his devotion to the cause, 11- year-old Zane Newman scooped up a number of awareness kits in his arms during the March 19 event at the Butcher’s Nestled in a region rich in Navy history, Block Banquet center. more than 50 people turned out on a The advocacy event bright warm afternoon on March 25 for the coincided with the meeting of the MSF- presentation at the Marriott Courtyard. affiliated Show-Me State MS support group MSF Ambassador Ann Pietrangelo was and was attended by 27 participants, introduced to the audience and she including Trevin Thompson and Stormi discussed the support the foundation has Newman, both of whom talked about to offer. Many in attendance shared their coping with MS in their families. personal experiences with MS. A psychiatric Specific issues for the group included nurse shared her experience about how the the lack of electric disease has affected her cognitive abilities. carts in local stores, A man who works with the Centers for the red tape involved Independent Living shared information in local area programs about programs available in Virginia for for people with those with MS. An important advocacy issue disabilities, and addressed at the event was the problem of raising awareness medication denial by insurance companies. in the community. The event stressed the importance of getting the doctor involved in the process. Westminster, Colo. Tampa, Fla. In the outskirts of Denver, the rustic Westin Westminster Hotel Conference Center played host to the March 24 advocacy event. The 30 people in attendance represented the MSF-affiliated Broomfield MS support group and the North Area MS social group. Support group leaders Susan Rubright and Susie Silver were in attendance and Don On a sunny Florida afternoon at the Rubright donated rides as raffle items at height of spring break, more than 20 people the event worth $25 each. Specific local turned out on March 26 at the Residence issues included the financial aspects of Inn Tampa Northpointe Conference Center gaining government aid, the lack of to listen to Dr. Katherine Standley, D.O., at cooling tents at local events during hot the Florida Medical Clinic as she discussed weather, the lack of benches and places the topic Hormonal Changes for Women to sit in stores, and the general lack of with MS. Issues included the role of three affordable, accessible housing. central hormones, the research on the

MSFocus 42 Spring 2015 effects of estriol on disease progression, of claims by insurance companies. Eader and the lack of information on MS and also took the opportunity to mention that menopause. Susan Struder, support group with local elections on the horizon, now leader for the West Pasco MS Support is the perfect opportunity to approach Group in New Port Richey, Fla., addressed legislators on issues in New Jersey. the audience and discussed upcoming projects including a Drag Queen Bingo event. Coconut Grove, Fla.

In addition to educational programs, awareness was raised through fundraising It was a brisk, sunny morning as nearly events. That includes Jersey Mike’s Subs. 50 people turned out for the MSF’s March For the second year in a row, four of their 28 sailing event at Shake-a-Leg. The day South Florida locations spread the word of focused on adaptive sailing and fun for those National MS Education and Awareness with MS and their families. While most of Month through donations and customer the participants took the opportunity to go discounts. On March 13, the Fort out to sea on a large pontoon boat, many Lauderdale Jersey Mike’s Subs location brave souls went out on one of the smaller held a half-way party that included flyers sailing vessels. Shake-a-Leg founder Harry and oranges to entice customers to Horgan took the opportunity to introduce participate. On March 25, the company himself and his organization, which held its annual Day of Giving in which sponsors programs for special needs and 100 percent of all sales are donated to low income participants ranging from sailing their charity partners. A huge ‘Thank and kayaking to marine science classes. you’ goes to Hillary Hutchinson and the Jersey Mike’s Subs staff at the Deerfield Iselin, N.J. Beach, Parkland, Coral Springs, and Nearly 20 people braved Fort Lauderdale locations. the chill and a touch of rain Our thanks goes out to our corporate for the advocacy event on sponsors for providing support for these March 31 at the Renaissance programs and the thousands of people Woodbridge Hotel. In across the nation who joined us in attendance were MSF Board spreading MS awareness. We appreciate Member Charles Eader, the time and effort you provided in helping pictured right, and MSF affiliated support us deliver our message of advocacy and group leader and MSF Ambassador Nick community among those affected by MS. Marchesani, each of whom took the oppor - Let’s keep the momentum going! If you tunity to speak to the audience about the would like to be involved in ongoing advocacy MSF and the programs it offers. The main efforts, email [email protected] to issue for those in attendance was the denial find out how you can help!

MSFocus 43 Fall 2014 By Colleen Fegan

Editor’s note: Oceans of Hope is a Sailing Sclerosis Foundation project, founded by Dr. Mikkel Anthonisen, of Denmark, with the intention of changing perceptions of multiple sclerosis. The project – supported by official partner, Biogen Idec – is the first ever circumnavigation of the globe by a yacht crewed by people with MS. In February, Colleen Fegan participated in a leg of the journey from the Panama Canal to the Galapagos Islands. I never want to lose my tan. Is that Now, here I could list the amazing things because I feel I look good with it? Am I I did and the sights I saw, but that has vain? Well yes, of course. But there’s a nothing to do with the life change. It was better reason. I live in Chicago, the snow life-changing because the Oceans of Hope capital of the Midwest. So everywhere I is aptly named. go strangers and friends alike ask in an For me, at age 58, I had tucked away exaggeratedly loud voice, “Where did you my hopes and dreams. Very quietly, I let get so tan?” them slip away. My life had been spiraling The answer I get to give is this: “I got down for so many years. I just figured that it on a 67-foot racing yacht travelling from nothing good was ever going to happen the Panama Canal to the Galapagos again. Sure, I kept a smile on my face, but Islands.” “You were on a cruise?” they in my heart I had become ruled by MS. I ask. I get to reply, “No, I sailed the boat.” still worked hard at keeping my body in I have MS and there is an organization shape and eating the right foods to battle in Denmark called Oceans of Hope that the onslaught of the disease. Daring to has organized a circumnavigation of the think that there would be something to earth using people with MS, like me, as look forward to on the level of an Oceans of crew. There are various legs, and I was Hope trip was totally out of the question. incredibly lucky to get my number one What is it for you? I wish I could _____ bucket list item, the Galapagos Islands. (fill in the blank). It still feels like a dream. I now feel like I can fill in my blanks. The That’s how the conversation goes, and confidence based on accomplishing this that’s why I don’t want to lose my tan. has made a different Colleen, one whom I Well, and there’s that ‘vain’ thing too. struggle to describe. An attitude change?

MSFocus 44 Spring 2015 Surely yes. But more. My heart is open will keep my hope well wide to what is possible with MS, no, fed for years to come. despite MS. What will I do? I am not I spent many days surrounded by so sure: this article for one, a many different types of people, with one new business for another. common denominator: MS. You know, we As I sat on the deck of a rarely talked about it, even though it beautiful boat, on the way was a guest at our dinner table each to my dream location, I night. On this leg of the voyage we had a felt that things like this doctor of psychology from Oxford, a were not supposed to happen to me. These business owner from London, an executive things happen to other people, not me – from Copenhagen, a mom of three from surely not me. Denmark, as well as another business It did happen, and there’s proof. executive from Denmark. It only took Please go to Oceans of Hope on Facebook moments for ‘we’ to become ‘us’. The boat and scroll back to my photos. I even got also had three permanent crew members to do the whole Titanic pose thing. and a neurologist on board. They were (When you are on the prow of a boat, you ‘us’ too. We stuck to discipline, lifted and can’t not do it.) toted, did our jobs, and we laughed so much. You have to try and use the head Then please, figure out where your (bathroom) on a rolling boat when you Ocean of Hope is. Do you like to sail? Ski? have MS. It’s very funny. Some other activity you have written off because of your diagnosis? Learn about How much hope fills an ocean? What your secret hopes and dreams that may helps us along? Is it one person like have been tucked away over time, and go Mikkel Anthonisen who is behind the after them. If you need a push, look at founding of Oceans of Hope, or does it come from within? Both probably. the smile on my face in these photos. For most of my life I have not been an In fact, if you know anyone with MS introspective person. Life before and (and everyone does), they are still looking after diagnosis, I have put one tired foot for crew members. in front of another waiting for the end of The web address is: the day. This journey has helped me see sailingsclerosis.org that hope is necessary in our lives. It Twitter handle is @sailingsclerosis , needs to be taken out regularly and and you can find them on Facebook at: nourished. I was lucky, Oceans of Hope facebook.com/OceansofHope.

Colleen Fegan, a 58-year-old mother of two wonderful daughters from New Jersey, lives in Crystal Lake, Ill, just outside Chicago. She was diagnosed with MS in 2004, and has two other autoimmune diseases as well. She spent most of her adult life in medical sales. Her Oceans of Hope dream is to start her own sales/manufacturing firm in the medical industry.

MSFocus 45 Spring 2015 By Shelley Peterman Schwarz

When my two children were young, I was still in the house should they need always felt tired and sleep deprived. me. However, I might be resting or having Jamie and Andrew were normal, active my “quiet time.” infants and toddlers, but they were not 4. From the time the kids were very great sleepers. I still vividly remember young, we played board games while I how my husband Dave and I took turns reclined on the couch or was lying in sleeping-in on weekend mornings. It did bed. When I couldn’t reach or grasp the help, but I looked forward to a time when game pieces, the kids moved the pieces the children were more self-sufficient for me. and needed me less. 5. When the children wanted to have When Jamie, 5, and Andrew, 3, were a friend over to play, we talked about in preschool, I was diagnosed with who would be a good choice. (Some of multiple sclerosis and the word “tired“ their friends needed more supervision took on a whole new meaning. It was than others.) impossible to keep up with the children no matter how much sleep I had. I had to 6. When we could arrange it, the kids find new ways to take care of the children were involved in indoor sports, (ice given my limited energy and stamina. If skating, gymnastics, tennis, soccer, health problems limit your ability to take swimming, etc.) especially during seasons care of your little ones, perhaps some of when they couldn’t play outside. Since I my tips might help you. was no longer able to drive, I asked other parents if they would have room in their 1. Find a space in your house that carpool for my child. People were amazingly can be used as a playroom. You can keep kind and inclusive. Because I felt awkward your eye on the kids and the “mess” they asking for help, I offered to help pay for create is contained in one area. gas. 2. To eliminate packing the kids up Today, my children are grown up with and taking them out, I invited another children of their own. As a grandmother, mom and child over. These moms were I have embraced the “Digital Age” of also my friends and knew of my health computers, smart phones, and 24/7 cable problems. We’d sit where we could see TV with 200+ channels on all sorts of the children and visit while they played. topics. Technology has added a unique 3. At times, I hired a neighborhood new twist for today’s parents (and child, as a “mother’s helper,” to come grandparents). Since I still can’t depend over after school to play with the kids. I on my head and heart to agree with my

MSFocus 46 Winter 2015 energy and stamina, I use technology to keep the children engaged. Whether it’s watching a video together, playing an educational game on the iPad, using YouTube videos to learn how to do some - thing, or researching information of special interest to one of the children, I’m spending quality time with my darling grandchildren and I love how we are making memories and learning new THE PRETTIEST PROTECTION YOU’LL EVER WEAR... things from each other. Pretty, Waterproof, Leak and Stain Shelley Peterman Resistant Panties. Schwarz lives in To deal with occasional or frequent… Madison, Wis. She is Stress Incontinence, the award-winning Urgency Incontinence, writer and author of Over Active Bladder, 7 Tips for Making Heavy Menstrual Cycles, Life Easier books, A Do you have Laugh, Cough or Sneeze incontinence? columnist for the You Deserve the best… Wisconsin State Journal newspaper, and Vv SkiVvys are Eco Friendly, Wash and Dry. Made in the USA a monthly guest on the CBS affiliate in www.VvSkiVvys.com south-central Wisconsin, (WISC-TV) on Enter Promo Code: 4MSF2U New 3 at Noon. She was diagnosed with To receive a discount and help MSF! primary-progressive multiple sclerosis (a portion of every sale will be given to the MSF) Please help our cause... more than 30 years ago. She said “even though I'm severely disabled due to MS, I lead a happy, unlimited life. I've made peace with the many loses that I've had.”

MSFocus 47 Winter 2015 MSFocus 22 Winter 2015 MSFocus 22 Winter 2015

HALT-MS Trial: Hope or Hype?

By Ellen Whipple, BS, Phar m.D. “Updates by the Pharmacist” spotlights the latest significant research on MS medications as well as pharmaceutical issues significant to MS care. No endorsement is implied. Data show the currently approved Three-Year Findings disease-modifying drugs decrease the The purpose of the HALT-MS study number and severity of relapses in was to determine the effectiveness of patients with relapsing-remitting high-dose immunosuppressant therapy multiple sclerosis, but do not entirely (using carmustine, etoposide, cytarabine, eliminate them. Consequently, many melphalan, and rabbit antithymocyte patients with relapsing-remitting globulin) followed by autologous multiple sclerosis experience relapses , hematopoietic stem cell transplant in disease progression, and accumulated patients with multiple sclerosis. In the neurological disability while receiving study, patients received high-dose these medications. Three year data from chemotherapeutic drugs that suppressed the Phase II, multicenter HALT-MS trial the immune system followed by blood- suggested treatment with high-dose forming (hematopoietic, CD34+) stem immunosuppressant therapy followed cells, which were collected individually by autologous hematopoietic stem cel l from the patients prior to the administra - transplant may improve patient outcomes tion of the high-dose chemotherapeutic (beyond what the currently approved drugs. The transplantation of the auto- disease-modifying drugs can offer) by logous hematopoietic stem cells were inducing sustained remissions. necessary to prevent the long and Treatments High-dose immunosuppressant drugs: high-doses of drugs that suppress or reduce the strength of the body’s immune system Autologous Hematopoietic Stem Cell Transplant: stem cell transplants that utilize the patient’s own stem cells

MSFocus 51 Winter 2015 prolonged periods of low blood cell “Adverse events were consistent with counts that occur after the administration expected toxic effects associated with of high-dose chemotherapy. After receiving high-dose immunosuppressant therapy the high-dose immunosuppressant therapy followed by autologous hematopoietic s tem and the hematopoietic stem cell transplant, cell transplant.” These toxicities included patients were not given additional disease- both Common Terminology Criteria for modifying drugs. Adverse Events (CTCAE) Grade 3 events Twenty-five patients were enrolled in (severe adverse events) and CTCAE the HALT-MS study. Final result will be Grade 4 events (life-threatening or available after five years of treatment. disabling events). More specifically Three year results were recently published there were 130 CTCAE Grade 3 events for 24 patients. These results are available and 94 CTCAE grade 4 events! in the December 2014 issue of the Journal Hope or Hype? of the American Medical Association Neurology which is available online at The three-year efficacy results were http://archneur.jamanetwork.com/article very impressive, especially since high-dose .aspx?articleid=2084840. immunosuppressant therapy followed by autologous hematopoietic stem cell While this study is still ongoing, it is transplant was a one-time treatment. If no longer recruiting patients. the four-year and five-year data are The majority of patients were diagnosed consistent with these findings, larger with multiple sclerosis during the last 15 studies will still be needed to confirm the years. All patients experienced clinical results. If these findings are confirmed relapse with loss of neurological function in larger studies, high-dose immuno- while receiving currently approved suppressant therapy followed by autologous disease-modifying therapies in the 18 hematopoietic stem cell transplant may months prior to enrollment. become a potential therapeutic option The primary endpoint of this study for some patients with relapsing-remitting was event-free survival (survival without multiple sclerosis, particularly those death or disease progression from who have not responded to the FDA- confirmed loss of neurological function, approved therapies. clinical relapse, or new lesions on MRI). The toxicity profile of the high-dose At three years, event-free survival was immunosuppressant therapy is the most 78.4 percent. Other endpoints in the concerning factor. During the three years study included EDSS progression-free of this trial, the 24 patients experienced survival and clinical-relapse free survival. more than 200 CTCAE Grade 3 and 4 At three years, progression-free survival events. These toxicities are generally not was 90.9 percent, and clinical-relapse seen with the first-line injectable disease free survival was 86.3 percent. In addition, modifying drugs. The long-term effects EDSS scores, MS Functional Composite of the high-dose immunosuppressant Scores, and MS Impact Scale quality-of- therapies will also need to be considered . life scores were also improved. For example, many immunosuppressant According to the authors of the study, therapies have been linked to blood cancers,

MSFocus 52 Spring 2015 specifically acute myeloid leukemia and study is completed. myelodysplastic syndromes, and reactivation So, for now, the jury is still out. Stay of latent viruses. To fully understand the tuned. long-term effects of the high-dose immuno- suppressant therapy, patients will need to (For more information on this topic, be monitored for many years after the see page 70.)

Additional Resources www.halt-ms.org/ hwww.clinicaltrials.gov/ct2/show/NCT00288626?term=halt-ms&rank=1

Ellen Whipple has been a medical advisor with the MSF since 2002. She is a clinical pharmacist employed as a medical affairs specialist, as well as an assistant clinical professor at the University of Georgia. She received her Doctorate of Pharmacy degree from the University of Georgia College of Pharmacy in 1994 and was later employed at the Shepherd Center and Children’s Healthcare of Atlanta. Ellen is an active member of the Georgia Society of Health System Pharmacists. She has also served on the Pharmacy Advisory Committee for the Department of Community and Health.

MSFocus 53 Spring 2015 The Center for Medicare Advocacy The ever-changing landscape of federal regulations, medical technology, and insurance coverage can make one’s head spin. This column spotlights government resources available to qualifying people who have multiple sclerosis and other chronic illnesses.

Medicare is the national health insurance they reach age 65 if they receive Social program to which all Social Security Security benefits. recipients, who are either 65 years of age The CMA website is at its most or older or permanently disabled, are detailed when it comes to coverage of MS entitled. Individuals disabled by multiple under Medicare. It is a myth, the website sclerosis are eligible to receive Medicare states, that people with long-term illnesses benefits. and those in need of long-term care are Medicare can be confusing, even for not covered by Medicare. It is true that people who are familiar with our nation’s Medicare often denies coverage to health care system. The Center for individuals with chronic conditions on Medicare Advocacy’s website hosts an the grounds that their condition will not information section that has what you improve, and, or that the services are to need to make informed decisions. maintain, not to improve, their condition. The CMA website describes the typical The CMA established in 1986, is a reasoning given for denials of coverage national nonprofit, nonpartisan law and a short entry on what can be done to organization that provides education, contest a Medicare denial. advocacy and legal assistance to help senior citizens and people with disabilities, The Center’s work includes: like MS, obtain fair access to Medicare • Representing thousands of individuals and necessary health care. in appeals of Medicare denials. Online at www.medicareadvocacy.org/ • Responding to approximately 7,000 about, visitors can learn about Medicare telephone and email inquiries each year. and its services, the differences between • Producing a wide array of electronic Medicare and Medicaid, and eligibility and hard copy educational materials. requirements. Individuals with MS can qualify for Medicare coverage before age • Advocating in administrative, judicial, 65 if Social Security determines that and legislative forums. they are permanently disabled and they • Pursuing Medicare coverage for have received Social Security disability individuals and for dually eligible benefits for 24 months. People with MS beneficiaries (individuals who are will also be eligible for Medicare when eligible for both Medicare and Medicaid).

MSFocus 54 Spring 2015 A complete list of the Center for Medicare Advocacy’s publications and products is available on their website at Let us know what you thought of this www.medicareadvocacy.org/hidden/ article! Email your comments to products-services . These items include [email protected], topics on the Affordable Care Act, basic or mail to the address on the back introduction to Medicare, chronic cover, Attn: MSFocus Letters Column. conditions, home health, and long-term care.

Listen to the Sound of Our “Voices” on

Maybe you, or someone you care for, have a story to tell – an unforgettable experience linked to MS. Maybe that story just cries out to be shared with the community. Or perhaps yours is a simple tale of coping with MS to which others can relate. That is what the “Voices” feature is all about. We share the stories of people just like you with our listening audience. MSFocus is continually seeking your personal stories for both print and radio. For print, they should be no more than 800 words in length. You may also submit a personal “headshot” photo at 300 dpi. You may submit these to [email protected] for consideration. For radio, you should be able to tell your story clearly and succinctly in less than eight minutes. Segments are recorded by phone, by appointment. Please email a brief outline or description of the story to Kasey Minnis at [email protected] for consideration.

MSFocus 55 Spring 2015 North, to Alaska! about the disease. To show your support, Cruise for a Cause 2016 urge your members of Congress to sign on to H.R. 292 and S.849. If you would Sail with the MSF to Alaska, America’s like more information on how to effectively final frontier. Explore some of the most communicate with your legislators on this exciting and scenic areas in North America issue, email [email protected] for a onboard Celebrity’s Solstice while attending fact sheet on writing to your legislators one of our many motivating, educating, and other useful information and empowering programs presented by MS experts. In Our Office Book early to assure a stateroom of choice The Program Services Department on the 2016 MSF Cruise for a Cause ®, a spotlights individuals who help bridge seven-night cruise departing from Seattle the Foundation and our community. In on May 20, 2016. Take the opportunity to this edition, we focus on Support Group visit with old friends and make new ones Program Clerks, Courtney Minott and as we navigate the Tracy Arm Fjord. See Kara Marsh. the Alaska wildlife as we visit Juneau. Courtney is responsible for processing In Skagway, take a ride on the White Pass support group meeting and Yukon Route Railway. Stroll through flyers and maintaining Ketchikan, Alaska’s first city and the and updating program salmon capital of the world. records. Courtney holds For more information or to make a an associate’s degree reservation, contact Gabriela Aragon at from Broward College Aragon Travel at 888-408-4129 or email and is currently pursuing [email protected]. Courtney a bachelor’s degree in Minott business management. Backing MS Research Bill As mentioned in As We See It on page Kara is responsible for 4, the MSF, together with our fellow processing support group members of the Multiple Sclerosis Coalition, meeting paperwork and supports the Advancing Research for maintaining and updating Neurological Diseases Act of 2015 (H.R. program records. Kara 292, S.849). This act will offer the Centers holds an associate’s degree for Disease Control and Prevention a guide from Florida Atlantic in collecting information on how many Kara Marsh University and is pursuing people in the U.S. have MS and their a bachelor’s degree from FAU. She is demographic characteristics. This will majoring in anthropology, and minoring provide researchers with basic information in sociology and French.

MSFocus 56 Spring 2015 By Hildy Berger

The Show Must Go On! MSF Ambassador Twyla Cochran was so excited meeting Nashville, Tenn., “Music City” musician/writer/producer Nolan Neal, she just had to ask him if he would headline a benefit concert for the Foundation. And he agreed! After two months of planning Rocking Out Multiple Sclerosis in Copperhill, Tenn., on concert day Nolan was so sick a doctor was called to check him out. After determining Nolan was well enough to go onstage, the indomitable performer didn’t let his audience down. Despite not feeling his best, he put on a great show, which also included bringing the local high school band onstage – even singing “Happy Birthday” to one lucky band member. In addition to Nolan Neal’s performance, the concert also featured local talents Destiny Pittman, Tony Smith and Mark Huff. By evening’s end not only was the audience memorably entertained, but also MSF’s Program Services was amplified to the tune of $2,500. Many thanks to Copperhill Country Cabins, Dr. Stephen Treon, photographer Randy Gray, stage manager Jimmy Stanley, State Senator Mike Bell, all of Twyla’s dedicated volunteers and everyone who donated and bought tickets, making this one truly special Saturday Night live. Rumors Annual Turnabout Fundraiser Rumors Bar & Grill in Wilton Manors, Fla., hosted an annual event called Turnabout, a night of glam and radical entertainment, all for a great cause. Partygoers cheer and sing along as their favorite male bartenders strut on stage and perform as women! Highlights included a silent auction, 50/50 raffle, drink specials, and music from DJ Joshua Atom. Special thanks to event organizer Barbara Moeggenberg, emcee Daisy Deadpetals and Rumors’ staff and performers for their creativity, generosity, and unabashed enthusiasm. On a rainy Monday

MSFocus 57 Spring 2015 night they gave it their all for the MSF, raising $1,500 from the raffle, auctions, tips and customer donations. Our appreciation goes out to the event’s supporters and participating lads/ladies – you are all absolutely fabulous! Special Events Wilmette French Market in Wilmette, Ill., offers traditional farmer’s market goods from local and regional vendors, and on one special Saturday, volunteer fundraisers/local artisans Hannah Yulish and Sammy Stoeber hosted a table displaying hand-crafted flower pens and bracelets. Shoppers were encouraged to donate to the MSF and received their pick among the bright, multicolored items. Hannah organized the fundraiser in honor of her grandfather who had MS. Event day proceeds and donations from friends and family raised more than $800 for the Foundation. Way to go Hannah and Sammy; thanks so much! MSF Ambassador Shanyn Krieger, of Manzanola, Colo., and her volunteers offered patrons at Thyme Square Party Center – host of La Junta, Colorado’s annual craft fair – a feast fit for any shopping warrior. Shanyn’s hearty Chili Bowl and Cinnamon Bun lunch was a big hit on a cold Saturday, satisfying appetites and heating up $575 in donations for the MSF!

Thank you Martha Hannigan, MSF- affiliated Cape Coral MS Support Group leader, and her Sew Pretty volunteers for their ‘Wear a Mustache for MS Awareness’ fundraising initiative. Martha is the founder of Sew Pretty, the nonprofit organization that sells hand-crafted custom handbags, disability aids, aprons, and more, with all profits benefitting the MSF and veterans charities. To find out more about Sew Pretty, view a slideshow featuring their products, or make a donation, go to www.sewpretty-ms.com.

MSFocus 58 Spring 2015 Eastern Shore MS Support Group meets at Ruby Tuesday’s Fairhope, Ala., location every second Wednesday and consistently participates in the restaurant chain’s GiveBack program – specifically to benefit the MSF. How it works: the MSF registers online at Ruby Tuesday’s website (requesting one date per month, up to two months at a time); upon approval, a flyer is emailed to the Foundation and then forwarded to a volunteer who distributes it locally. When a customer gives a print out or copy of this flyer to the server, 20 percent of their bill is donated. Support Group leader Weezer contacted us in 2013, and though the group is not formally affiliated with any MS nonprofit, Weezer said, “We have a grant from MSF for our chair yoga class every Wednesday, which we really appreciate, so that’s why I thought of MSF when this donation opportunity arose.” Group members have used these flyers every month since August 2013, and donations raised from their meetings since the first flyer campaign now total $1,120! If you or someone you know would like to participate in RT’s GiveBack program – or any similar third-party fundraiser to benefit the MSF – contact Hildy at 800-225-6495 or email [email protected]. So cool! Moved by the incredible viral success of the ALS Ice Bucket challenge, friend of the MSF Angie Blair Hearndon created the Chillin’ for MS Facebook Event page: https://www.facebook.com/events/146469905523289. The site links MSF’s Facebook Page and online donation links, and contributions referencing Chillin’ for MS and Ice Bucket Challenge currently total more than $1,700! Thanks Angie, for helping to make the MS cause part of this phenomenal initiative! Pancakes – The “New” Bake Sale For the third year in a row, the staff of Bright Horizons Family Solutions’ Discovery Pre-School Center in Boca Raton, Fla. conducted its Pancake Breakfast Sale to commemorate both the memory of Eric Leon and National MS Education and Awareness Month. Teacher Helene Kuperberg said “while everyone enjoyed the cookies and cakes of previous bake sales, these children have given pancakes the official thumbs up. It’s fun and it allows us a great opportunity to help support MSF’s programs and services.” Hildy Berger is the MSF’s Fund Development Coordinator. If you are interested in planning a fundraising event or would like more information, contact the MSF Fund Development Department at 800-225-6495 or send an email to [email protected].

MSFocus 59 Spring 2015 By Joanne Fortunato Videos and Voice Calling

Video chatting seems almost Jetsons- list, tap the video camera next to like, but today, it is a reality. All you need FaceTime. If they do not have an Apple is a Wi-Fi connection and a device with a device, this option is not available. front-facing camera. Of course, the person Once a call is made, if the recipient is you are calling needs the same equipment. available and answers, you will connect The amazing thing about video calls is automatically. There is no voicemail on that because they are made on a Wi-Fi FaceTime, so if they are not available, or network, you can call to and from anywhere do not answer, you need to press the red in the world as long Wi-Fi is available to end call icon to disconnect the call. If both the caller and the recipient. There someone calls you on FaceTime, a message are two main programs/apps that you on the screen lets you know it is a FaceTime need to accomplish this task: FaceTime call. Because it is a video call, you may (Apple only) and Skype (Android and Apple). want to consider this before you answer. General Information for Skype Skype and FaceTime You can only video and voice call others FaceTime who also have a Skype account. You need FaceTime video/voice calls can be made the Apple or Android app, a free download. to and from any Apple device that is on You can create an account from the app or Wi-Fi. If the device you are using does the website Skype.com. Unlike FaceTime, not have cell service and no phone number Skype can be used on any Apple or is available, such as an iPod or iPad, an Android device or Mac or PC. You need email address is used. The recipient needs the Skype ID of the person you want to to activate FaceTime on their device video call. before they can make and receive calls. To navigate Skype on a phone, you There are several ways to make a need to swipe to see more options. The FaceTime call. From the FaceTime app, screen is too small to show all the options type a mobile number or an email address, at once. You can access more options by or tap the “+” and FaceTime will access pressing the three dots in the corner. On your contacts and add them to your list. a tablet, all the options are visible at Then, tap the video camera icon to place startup. Skype is similar on both platforms. a video call. To access from your contact There may be minor differences, but it is

MSFocus 60 Spring 2015 basically the same program. internationally and want to call the U.S. Visit apple.com and search for FaceTime Many similar programs give you a to get more information, or visit separate number and only work if both https://support.skype.com/en/ to learn more caller and receiver have an account in about Skype. the program. Additional Programs In addition, if both users have Vonage accounts, you can text and video chat An additional free program worth free as well. The added feature of texting mentioning is Vonage. With Vonage, you is great if there is a time difference can call any landline or mobile number between callers. Like other similar in the U.S. or Canada for free. You are programs, you need Wi-Fi to use Vonage. allotted 3,000 minutes per month. A Wi-Fi is usually available in hotels, cafes, great feature of Vonage is that your airports, and many other locations. caller ID is your phone number. This Many times the access is free or there is means that anytime you are connected nominal fee. through Wi-Fi, you can call landline or mobile for free and your number will Staying connected is easy and can be appear as the caller ID. This is a great free no matter where you are or where program to use if you are traveling you calling or chatting. Joanne Fortunato, BS, MA is a retired computer technology teacher in Troy, N.Y. She has a master’s degree in education and has been teaching technology to teachers and students for 30 years. She has published several articles and books on educational computer technology, including several articles with the International Society for Technology in Education (ISTE). She was diagnosed with MS in 2006 and uses technology to aid in coping with the many difficulties that MS can present. She is excited to share this information with others that deal with the same and many other issues on a daily basis.

HEAT RELIEF DEPOT™

Your Place For Personal Cooling & Warming Products!

Cooling Vests Warming Vests Neck & Wrist Coolers Hand & Foot Warmers Fans & Sunscreens Warming Cushions Hats, Caps, Visors Herbal Wraps Misting Products Heat Packs & More! & More!

Visit Our Website At www.HeatReliefDepot.com Receive a 10% Discount Use Coupon Code: MSF

Or COra Callll U Uss TollTo Freell Free 877877-8-87979--14501450

MSFocus 61 Spring 2015 to Jay, the website averages 10 requests a month. When a book gets spotlighted or even turns up in an article writer’s bio, then requests for the book in question jump. During the months when MSFocus is released, he receives about a call per day. Often, MSFocus readers play a key role in helping expand the library by forwarding titles for Jay to add to the collection. One of those readers is Michelle McCart, Ph.D. of Chicago. The Lending Library is a blessing for Michelle. She has lived with the disease for 17 years and likens it to earning another degree. Knowledge is power that offers her power over the disease. “It’s my library,” she said. “It is more relevant to my needs. I like to look at things from multiple perspectives, and The Multiple Sclerosis Foundation offers that’s what I get from the Lending media resources for the MS community. Library.” The main means of doing so is the Lending It provides an opportunity to review Library program. The program started books before buying and adding them to with six books and two tapes in 1997. her own collection. On occasion, she will Now, the library consists of more than receive suggestions for books to read. “I 300 books and 100 DVDs. will ask Jay if he has it. If he doesn’t “The Lending Library is a service for have it, he will order it and I’ll check it out.” mostly our homebound folks who can’t get The MSF Lending Library is lined out,” Jay Hass said, who has administered with free books, CDs, DVDs, audio, and the program since 2010. visual materials that are available by “Our Lending Library gives them free mail across the U.S. access to specialty books on MS, chronic A handful of titles are available in illness, inspiration, and general knowledge large print. The titles are diverse. Some [on topics ranging from] caregiving to diet. focus on living with MS and include Me All these books [are] related to a chronic and My Shadow: Learning to Live With illness, but especially to MS. They can’t Multiple Sclerosis by Carole Mackie and get out to their library or their library Living Beyond Multiple Sclerosis: A doesn’t really specialize – they might Woman’s Guide by Judith Lynn Nichols. have one book on MS – but we have all Others put the spotlight on living with a the books on MS.” chronic illness and include The Ultimate Requests for materials can be made Guide to Sex and Disability: For All of on the phone or on the Internet. According Us Who Live With Disabilities, Chronic

MSFocus 62 Spring 2015 Pain, and Illness by Miriam Kaufman, most rewarding aspects of the job for Cory Silverberg, and Fran Odette; and Jay. “I enjoy the human interaction and Peace in the Storm: Meditations on knowing that I’m really helping people.” Chronic Pain and Illness by Maureen Michelle agreed, “I truly feel you are Pratt. There are also general titles such helping those of us with MS cope, and it as Letting Go of Anger: The 10 Most helps us find a new way of dealing with Common Anger Styles and What to Do it. I can’t say enough about Jay. He’s About Them by Ron Potter-Efron and been a really nice person and that really Pat Potter-Efron and The Happiness Project by Gretchen Rubin. helps.” “I love books,” said Jay. MS For Individuals are limited to one media Dummies ranks among Jay’s favorites item at a time for a three week loan period. in the collection. “All the ‘For Dummies’ But the loan period can be extended for books are very comprehensive. They go an additional three weeks upon request. into every aspect of the subject. Each media item mailed includes a due Especially for a newly diagnosed person, date and a return, postage-paid envelope. there’s nothing really, other than asking To take advantage of this program, or their neurologist, that they won’t learn for more information, call our Program in that book.” Services Department at 888-673-6287, or “My tie with the readers,” is one of the contact us by e-mail at [email protected].

MSFocus 63 Spring 2015 David Osmond Inspires MS Community Through Song

By David Osmond wasn’t exactly a stranger to MS because I’m David Osmond and my story is a my dad, Alan Osmond, has another form lot like many others living with relapsing of the disease. I thought I knew every - multiple sclerosis. It started with a difficult thing there was to know about MS, diagnosis, leading me through a journey but in a very short time, my condition from anger to denial, and eventually to progressed beyond what I saw my father the motivation to face this disease head-on. go through when I was growing up. I Following the experience of my diagnosis needed to do more research to better and treatment, I’ve been fortunate enough understand the battle ahead of me. I to share my story and help empower wasn’t ready for a disease-modifying those who have also been affected by the treatment at the time, and I certainly disease. I have been able to use music to wasn’t ready for needles. So, I decided to unite the MS community. I’ve always try to manage my MS through diet and expressed myself best through music – exercise. At that time, I had about one to me, music is what feelings sound like. to two relapses per year, experienced It is my hope that my story motivates difficulty walking, and even had to use a and inspires others to become better wheelchair periodically. self-advocates when dealing with the It took me some time before I was ready challenges MS brings. to take an active approach to treating I was diagnosed when I was 26, in MS. I eventually realized that I was just the prime of my life. I noticed my first coping and not doing everything I could symptoms when I was performing in a to actively manage the disease. One part show. My vision was affected, and then of this evolution stemmed from seeing symptoms progressed from my feet, my brother play on the floor with his through my legs, back, chest, and even to kids. I questioned if I would ever be able my hands. I was scared because my to do that with my kids because of my family and I didn’t know what was wrong relapsing MS. Once I got married and with me at the time. After many doctor started my family, I wanted more than visits and tests, I was finally diagnosed. ever to make sure I was taking care of I was relieved, but I was also in denial. I myself the best I could. When I received

MSFocus 64 Spring 2015 The National MS Society “Spirit of Life This, based on my own experience and Award” in September 2010, my wife and advice I received from my family when I I made a decision that I would dedicate was diagnosed. I hope this song helps myself to managing my MS so that I inspire and motivate people living with could continue to be active with my wife relapsing MS get serious about actively and kids now and in the future. managing their health. It’s been an amazing experience thus far working on Last year, I teamed up with Novartis Our Voice in Song and meeting others Pharmaceuticals Corporation on an educational campaign, Our Voice in who are facing similar challenges. Song™, to inspire people living in the This year, I’m continuing to meet MS community to raise their voices and with MS communities all over the U.S. take charge of how they manage their You can find more information at disease. A lot has changed in the past www.ourvoiceinsong.com, where you can few years and many more treatment also download I Can Do This for free, options are available. Treating relapsing watch my new music video, access MS early is a crucial part of managing helpful tips and tools, and learn more it. I researched what treatment options about the campaign. were available and worked closely with my doctor to understand the risks and David Osmond is a solo music artist, benefits, eventually selecting an oral Broadway performer, motivational speaker, disease-modifying option that was right and lead singer of The Osmonds 2nd for me. Everyone’s experience with Generation. He has performed in more relapsing MS is different, so I would than 17 countries and has had three top encourage anyone living with the disease 40 hits in the U.K. David is a married to talk with their doctor about which father of two daughters and the nephew treatment option would be best for them. of Donny and Marie Osmond. A long- Now that I’ve taken charge of managing standing advocate since his diagnosis in my relapsing MS head-on, I want others 2006, he has received multiple awards for to do the same. I wrote a song, I Can Do his commitment to the MS community.

/HDUQ0RUHDW$TXLOD&RUSFRP   

MSFocus 65 Spring 2015 iConquerMS Initiative Aims to Accelerate MS Research By Stephanie Butler

I have a strong interest in multiple other researchers creating a collaborative sclerosis research both as a healthcare atmosphere. provider and as a person living with MS. The iConquerMS initiative was I want to do my part to find a cure not launched by the Accelerated Cure only for myself, but also for my family Project for MS. The ACP staff are some members living with MS and the of the most passionate people I have hundreds of others with MS who I have ever met, and they are dedicated to cared for as a nurse. So naturally, when accelerating MS research efforts. They I was approached about a new and unique have put a tremendous amount of time research initiative that is the first of its and effort into this initiative, and their kind for MS, I was immediately interested. efforts are already having a tremendous That’s how I became involved in an effect on the MS community. I am exciting initiative called iConquerMS ™, extremely proud to serve on the and I’m excited to be able to tell you more about it. Membership Committee for iConquerMS, and part of my job is to help spread the iConquerMS is the first patient- word and get more participants powered research network in the MS involved. Our goal is to have 20,000 world. But what does that mean exactly? people registered and participating in the It means the people living with this iConquerMS initiative by September. disease are the ones that control the With more than 1,200 people in 48 states project. Participants can choose their already registered we are on our way to level of involvement which can range meeting our goal, but we need you to from simply filling out a few surveys to step up and help out. sharing their health data, proposing research questions, and helping to As a healthcare provider, privacy is decide what research initiatives take my number one concern. The iConquerMS priority. team takes privacy very seriously and has security technology in place to safeguard We are hoping that by crowdsourcing any identifying information. Additionally, a huge databank that researchers can all personal identifiers will be removed tap into, we can identify trends that we by ACP staff before it is shared with didn’t know existed and help cut the amount of time and money it takes to researchers. run a clinical study. Who knows, this The iConquerMS initiative has been may even help us find a cure faster. endorsed by all major multiple sclerosis Another great benefit of this advocacy groups in the United States initiative is that researchers share their including the Multiple Sclerosis Foundation. results directly with participants and Committees, like the one I serve on, are

MSFocus 66 Spring 2015 made up of the best and brightest people and so does yours. Enrollment is free in the MS community including doctors, and easy, and it all starts by visiting researchers, bloggers, and advocates. iConquerMS.org. Many of us working on iConquerMS If you have any questions feel free to are living with MS ourselves, and are ask me by e-mailing: passionate about helping it to succeed. My data has the power to conquer MS, [email protected].

Stephanie Butler is an ICU nurse who was diagnosed with multiple sclerosis at the age of 25. Six months after being diagnosed she became a Multiple Sclerosis Certified Nurse and started working in an MS center. She is also attending graduate school to become a nurse practitioner, and hopes to continue working with people who have MS for a very long time. Her blog, www.justkeepsmyelin.com, offers a unique perspective on multiple sclerosis from the point of view of both a healthcare provider, and as a person living with the disease every day. Her mission is to bring compassion, humor, and a deeper understanding of MS to anyone who needs it.

FREE EDUCATIONAL PROGRAMS BY PHONE Join us for the MSFocus Radio monthly teleconference series. Tuesday, May 19 – 8:30 p.m. Eastern, 5:30 Pacific Exercise for MS: The best way to get started. Presented by Jeffrey A. Segal, CSCS*D, NSCA-CPT*D, CPTS

Thursday, June 30 – 8:30 p.m. Eastern, 5:30 Pacific Clinical Trials: Everything you need to know. Presented by Ellen Whipple, Pharm.D

Tuesday, July 21 – 8:30 p.m. Eastern, 5:30 Pacific What Can the MSF Do for You? Presented by Kasey Minnis, MSF Director of Communications Keep an eye on your email and on our website for updates and changes to our teleconference schedule. To join any of these educational teleconferences, call 888-550-5602 and enter 23441168 up to five minutes before the scheduled start time. You will be placed on hold until the conference begins. To view the presentation during the call, connect to https://ccc.spiderphone.com/2344116 8.

MSFocus 67 Spring 2015 By Alissa Ayden

The Multiple Sclerosis Foundation Independent Support Group Network is growing! Please welcome the following newly-affiliated groups: Golden Triangle MS Support Group | West Point, Miss. MS Support Group of Cedar City | Cedar City, Utah MS Support Group of St. George | St. George, Utah Pediatric MS Support Group | Warner Robins, Ga. York County MS Fellowship | Fort Mill, S.C. You, Me, and the Lord Too MS Support Group | Winston-Salem, N.C. Please visit our website at www.msfocus.or g/support-groups.aspx for the meeting dates, times, and locations of the above listed support groups or to find the support group closest to you. As most of you know, March was National Multiple Sclerosis Education and Awareness Month ®. This year, our theme focused on grassroots MS advocacy and was anchored in the belief that each of us has the power to be an advocate on behalf of people with MS in our communities. Throughout the month of March, MSF-affiliated support groups around the country distributed thousands of MS Awareness Kits and participated in various MS awareness activities. Being a member of a support group is about being part of something larger than yourself. Support group leaders and members are often thinking of ways to help improve each other’s quality of life. Sometimes doing so is as simple as listening to someone’s story. Other times, doing so might require the time and effort necessary to help someone find appropriate resources so that he or she can receive needed support and assistance. Actions like these are the work of advocates dedicated to building a stronger MS community. If you’re interested in being a part of our grassroots MS advocacy movement, starting or joining a support group may just be the best place to begin. To learn more about the MSF’s Support Group Program and how you can apply to start or affiliate your support group, please contact me via phone at 888- MSFOCUS (673-6287) or via email at [email protected]. I look forward to hearing from you!

MSFocus 68 Spring 2015 MS NEWS and What It Means to You

The MS News column includes analysis from MSF Senior Medical Advisor Ben Thrower, M.D. Drawing from the top MS news stories of the quarter, Dr. Thrower will assess what the news means to you, the person with MS. Fingolimod Trial for PPMS of PPMS vs. relapsing-remitting MS. PPMS Does Not Meet Primary Endpoint tends to be slowly progressive with much less active inflammation. Most of our MS Novartis’ Phase III INFORMS study in disease-modifying therapies are designed primary progressive multiple sclerosis did to lessen inflammation. So, with PPMS, not show a significant difference between the major target for most DMTs may be fingolimod and placebo on a combination harder to hit because the target is smaller of disability measures in clinical trials. than in RRMS. What follows is my personal The safety results were consistent with take on PPMS, the negative clinical trial the well-characterized safety profile of results, and dealing with PPMS in real life. fingolimod in relapsing MS. 1: Less inflammation does not mean no PPMS is different from relapsing MS inflammation. Many people with PPMS in terms of its basic disease process, still have active or enhancing lesions on near-absence of acute relapses, and MRI. While treatment results may not fewer active MRI lesions. There are no be as dramatic with DMTs in PPMS approved treatments that have been shown as they can be in RRMS, some benefit to change the course of this disease, and may still be there. Trials of Copaxone management focuses mainly on the and Rituxan in PPMS were technically treatment of symptoms. negative, but closer examination shows The INFORMS study was based on the that some slowing may have still been knowledge that fingolimod enters the there with these drugs in PPMS. central nervous system and can interact 2: We are not very good at measuring with damage-causing cells residing in disability in MS. For years, our gold the CNS. As opposed to the consistently standard for disability measurement in strong efficacy seen in relapsing MS, the MS has been the EDSS or Expanded results of the INFORMS study seem to Disability Status Scale. This measure suggest that PPMS and relapsing forms of is heavily weighted towards walking MS have different underlying mechanisms. ability and does a poor job of measuring Dr. Thrower: Unfortunately, we still other issues such as arm function and have no FDA-approved option for slowing fatigue. More recent studies, including the progression of primary-progressive MS. the INFORM trial of fingolimod, also use This is largely due to the different nature the MSFC or MS Functional Composite .

MSFocus 69 Spring 2015 This looks at memory, upper extremity The study was published online by function, and walking speed; and may JAMA Neurology. be more sensitive to the big picture of Dr. Thrower: MS involves a person’s how a person with MS is doing. immune system attacking something that 3: Maybe we need to target something other it should not be. In MS, the immune attack than inflammation. If PPMS is more of is directed against the myelin in the brain a neurodegenerative condition than an and spinal cord. This abnormal immune inflammatory one, alternative strategies response is the result of both environ - such as antioxidants would be a better mental and genetic factors. What if we fit. Tecfidera is a DMT that is proposed could reprogram the immune system in a to work through such antioxidant way that would have it not attack myelin? pathways and will likely be tested in This is the idea behind an autologous PPMS. The biggest target for the hematopoietic stem cell transplant. future remains neural repair. Autologous means the stem cells come 4: Finally, don’t forget the role of wellness from the patient as opposed to a matched and symptom management. Even if we donor. The appeal of using autologous don’t have the magic bullet to stop and/or cells is that the body should not reject reverse progression in PPMS yet, we do them. An allogeneic transplant is one have a myriad of options to manage using a matched donor. Even with modern symptoms and improve quality of life matching techniques, there is the risk of through rehabilitation and medications. the body rejecting the transplant (host versus graft disease) or the transplant Stem Cell Therapy May Hold actually fighting the recipient’s body Key to MS Treatment (graft versus host disease) when using A new study shows that after three years, allogeneic cells. This means recipients of an experimental stem cell treatment was allogeneic cells need to be on medications effective for creating sustained remission to help prevent these complications. of active relapsing-remitting multiple Before a person can get their autologous sclerosis and was linked to improvements or allogeneic stem cells, the existing immune in neurologic function. The treatment was system must be wiped out. Autologous shown to have few serious early compli - stem cells are obtained from the patient cations or unexpected adverse events. and frozen for later use. Then, high-dose The study followed 24 patients who immunosuppressive therapy is given, using received high-dose immunosuppressive a combination of chemotherapeutic drugs therapy. Using a patient’s own cells, the to kill the existing immune system. The researchers found that the overall rate patient is then given their own stem cells of survival was 78.4 percent at three years. back to generate a fresh immune system, Progression-free survival was 90.9 percent one that does not know how to attack and clinical relapse-free survival was 86.3 myelin. As shown in the reported study, percent. Patients showed improvement the results can be encouraging. Still, this in neurologic disability, quality of life, is a very aggressive procedure, and there and functional scores. While researchers can be significant risks. The results appear encountered hematological and gastro- to be most encouraging in people with intestinal side effects, they were both aggressive RRMS, much less so for expected and reversible. progressive forms of MS.

MSFocus 70 Spring 2015 Studies Weaken MS, issue of JAMA , did not support concerns Vaccination Link about a causal relationship between qHPV vaccination and demyelinating diseases. A pair of studies calls into question links between vaccines and multiple sclerosis. Dr. Thrower: The topic of vaccine safety In particular, neither study found long-term in MS has been around for years. Two associations with the human papillomavirus recent studies shed some light on the vaccine and MS. relationship between certain vaccines and the risk of a demyelinating condition In the first study, a research team, led like MS. The first study looked at people by Dr. Annette Langer-Gould, of Kaiser who had developed a demyelinating Permanente, Southern California, in condition and another group who did not. Pasadena, Calif., looked at the complete The researchers then looked at whether health records of Kaiser Permanente, the subject had recently gotten any Southern California, members to determine vaccination, especially those for hepatitis whether vaccines, particularly those for B or HPV. No correlation was seen hepatitis B and human papillomavirus between vaccination and the risk of a (HPV), increase the risk of MS. They identified 92 cases and 459 controls of demyelinating condition. females ages 9 to 26 years. They found no The second study looked at all women associations between HepB vaccination, or receiving the human papillomavirus vaccine any vaccination and the risk of acquired in Sweden or Denmark between 2006 and central nervous system demyelinating 2013. The HPV vaccine is given to women syndromes (CNS ADS) up to three years to diminish the risk of acquiring human later. Vaccination of any type was associated papillomavirus. The vaccine is also offered with an increased risk of CNS ADS onset to men to lessen the likelihood that they within the first 30 days after vaccination may transmit HPV to women. 99.7 percent only in younger individuals. They found of cases of cervical cancer are due to chronic that short-term increase in risk suggests infection with HPV. While cervical cancer that vaccines may accelerate the transition was once a major cause of death in women, from subclinical to overt autoimmunity rates decreased drastically when routine in patients with existing disease. Their Pap smears began. Still, in 2014, 12,360 findings, published in the December issue women in the U.S. were diagnosed with of JAMA Neurology , however, do not suggest cervical cancer and 4,020 died from it. a need for a change in vaccine policy. HPV vaccinations will hopefully reduce The second study, led by Nikolai Madrid these rates even further. In 2009, there Scheller of Statens Serum Institut, in were five reports of women developing a Copenhagen, Denmark, wanted to know if demyelinating condition within weeks of the quadrivalent human papillomavirus getting the HPV vaccine. This most recent (qHPV) vaccination is associated with large study failed to show any correlation an increased risk of multiple sclerosis. between the risk of developing MS and Identifying a cohort of all females ages having gotten the HPV vaccine. This study 10 to 44 years in Denmark and Sweden, does not address the safety of the HPV followed up from 2006 to 2013, researchers vaccine in a person already diagnosed with found no link between the qHPV vaccination MS. Given that the HPV vaccine is not a and the development of multiple sclerosis. live virus, one would not expect any risk of Their findings, published in the January an MS relapse after receiving this vaccine.

MSFocus 71 Spring 2015 NONPROFIT ORG. U.S. POSTAGE 6520 North Andrews Avenue PAID Fort Lauderdale, Florida 33309-2132 FT. LAUDERDALE, FL ® PERMIT NO. 2698 Change Service Requested

Are you moving? Please notify us of your change of address. Call: 888- MSFOCUS (673-6287 ) or Email: [email protected]

RAND-SCOT EasyPivot Spirit Cycle Incorporated

Make an Easy transfer Feel better for life with with the EasyPivot… Spirit Cycle… The EasyPivot Patient Lift is the patient lift of choice! Saratoga Spirit 690  '#) %$ #$" ) %"$$ #%$ %#"("#$$#&"#$)) % "$ "$ # # # $#"$"##$ ' "%#$) %""#%#$) %"# " & $$$#$
 '# "!%#)%#$$#$ ,#-" % $#%$""%$ $#"$ $%") %"$  #$EasyPivot  ") %"$"#""#
%#) %""# $) $ '$, %$  #"- " &#% "# $#)#$

* #$ ## * $"$) %"" '$ # %" %## * %#$'$ * $"$) %""$ # %#"$#"& *     "") $"#"# * $) %" " &#%"$ * $$") *   $" ) %"'$ * $$"+ $$"

www.RandScot.com 401 Linden Center Drive • Fort Collins, CO 80524 • 800-467-7967 • 970-484-7967 • [email protected] ©2012 Rand-Scot, Inc., Manufacturers of EasyPivot™ Lifts • Bye-Bye Decubiti™ Cushions • Saratoga Fitness Products