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Publications Manager Terry Schenker Editorial Coordinator Christopher Paine Editorial Committee Kasey Minnis Natalie Blake Alissa Ayden 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 Dr. Miriam Franco MSW Psy.D. MSCS Ellen WhipplePharm.D. Laura McCatty RN BSN MSCN Mark McCatty David Osmond Randall T. Schapiro M.D. FAAN Shelley Peterman Schwarz Ben Thrower M.D. TALK BACKTALK BACK We Welcome Topic Suggestions for Future Issues. Your comments about each issue are important to us. Email comments to editormsfocus.org or write to Editor MSFocus 6520 N. Andrews Avenue Fort Lauderdale FL 33309 Take MSFocus on the road with MSFocusRadio.org Listen on your PC or mobile device Available 247 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. Statement of Purpose The purpose of the Multiple Sclerosis Foundations 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. 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 MSF Mailbox 5 From the Library 21 Facebook Feedback 33 Voices Life-Changing Ocean Voyage Fills in a Blank 44 Updates by the Pharmacist 51 Uncle Sams Helping Hand 54 PS Whats New 56 Regional Events 57 MS Tech 101 60 Men MS 64 Support Group Spotlight 68 MS News 69 4MSFocus Spring 2015 Not long ago a bill in Congress authorizing a means of counting the number persons diagnosed with either MS or Parkinsons H.R. 1362 The National Neurological Diseases Surveillance System Act though having passed a vote in the U.S. House of Representatives didnt make it past the Senate. This failure was troubling to most of us around the country as it was just another piece of badly needed legislation that got caught up in the malaise of dysfunction affecting Congress. With regard to MS the number of persons in the U.S. so affected ranges from 350000 to 500000 depending upon which scientist neurologist advocacy organization or pharmaceutical industry representative you are speaking to at the moment. Many speculate those numbers could be significantly higher. Its a guess at best and it has its basis in studies done in the seventies. To say we are long overdue for obtaining a realistic count is an understatement. Fast forward to the present where up before Congress is the Advancing Research for Neurological Diseases Act of 2015 H.R. 292 in the House and S.849 in the Senate.This bill proposes a comprehensive analysis of the incidence and prevalence of various neurological diseases including MS. The benefits of these studies are too 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 through the years with the increased mobility of our society What are all the characteristics of patients their family histories and how many reside within a given locale This is just to name a few possible insights we could gain. When it comes to how we view MS and other neurological diseases of course its about individuals and how they are affected. However there is also the cost to society in terms of the loss of productivity of a portion of the population and all its corresponding economic and social ramifications. At the core of it all lies the depth and breadth of our understanding of disease on both the cellular and people levels. Our willingness to provide solutions is a measure of the direction of our moral compass as a nation. This is what drives our ability to develop treatments and cures. We at the MSF join with our fellow advocacy organizations in appealing to Congress to pass this bipartisan initiative. Add your voice as well by contacting your elected representatives on Capitol Hill. The links at the bottom of the MS Community Advocacy page on our website www.msfocus.orgAdvocacy.aspx make it easy. Lets strive to help get it through Congress as a clean bill free of controversial amendments and onto the presidents desk for his signature. Jules Kuperberg Alan R. Segaloff Co-Executive Director Co-Executive Director Lets Make This One Count -Lets Make This One Count - Finally.Finally. Thank you so much for the articles in the MSFocus magazine about Sew Pretty and in the Support Group newsletter about the Cape Coral Support Group. What a wonderful surprise to see them both. Thank you and please pass on my gratitude to all persons at the Foundation who work on these publications. You have been such a wonderful support to Sew Pretty and me. We are working very hard to get grant money for a working space or building that is handicap-accessible for Sew Pretty as well as a Community Resources Coordinator to serve as the organizations resources developer and special projects manager to help us as we grow. We have hired a grant writer to help with this. Hopefully we will be able to get funding for these two areas this year. Our mission is still to donate our profits back to MS services and research. Thank you again for all of your support. Martha Hannigan executive director Sew Pretty Corp. www.sewpretty-ms.com Many thanks again for making it possible for me to be made aware of A Mindfulness-based Stress Reduction Workbook. I will buy it as a tool to reach my goals for better tomorrows with MS. I am grateful for this wonderful Lending Library program and your always uplifting spirit. Beverly Thomas Baltimore Md. I enjoy reading MSFocus magazine. Always an excellent source for timely topics and honest news All the best for you in 2015 Sharon K. Fetters Sweetwater TN I want to extend my great appreciation for your generous support through your assistive technology program for mushroom buttons on the elevator I just had installed in my house. As my MS progressed I was having difficulty transferring from my wheelchair to my stair lift then to a walker upstairs. The elevator carries me in my motorized chair up into the bedroom. Giant buttons are easier for me to press since I have to keep pressing for the duration of the ride. I think of the Foundation every time I press those buttons. Thank you so much. Tamar Sherman Northport NY I went to my neurologists office yesterday and saw a pile of MSFocus so I took one and just read it. Well done and thank you I appreciate your articles. As someone living with MS for about fifteen years I have experienced many symptoms you discuss and read more to understand that others know what IknowandwhatImightexpectinthefuture. So again thank you and if possible please add me to your mailing list. Bob Jacoby Wilmington NC MSFocus Spring 20155 If you have any comments or questions for the MSF they can be emailed to editormsfocus.org or written to Editor MSFocus 6520 N. Andrews Ave. Ft. Lauderdale FL 33309 MSFocus Spring 20156 Multiple sclerosis usually begins in a young person with the average age of onset at 30. In a young person thoughts tend to lean toward athletics body image career friends and sex. With aging thoughts may evolve toward retirement and health but sex remains prominent. Multiple sclerosis has an effect on all aspects of life and clearly it affects sexual function and ones image of sexuality. Sexuality is an all-encompassing descriptive word that involves aspects of intimacy and sexual function. Under- standing intimacy is essential to having a successful long-term sexual relationship. Intimacy includes Sex the act Love emotional feelings Security caring and being cared for Sensuality warm and sexy Relating at all levels Intercourse Empathy understanding Protecting Conversation Touching Looking Honesty Body language To want To understand Commitment To accept These important topics need to be discussed completely between partners. These topics and others may indicate feelings of rejection loss of emotional control fear of incontinence and feelings of shame and vulnerability. Sexual dysfunction is reported in a significant majority of men with MS and in about half the women as well. The sexual response begins with arousal Increased blood flow to the sexual organs Erection of cavernous spongy tissue of the penis and clitoris Release of nitric oxide in the region Lubrication in women as erection in men By Randall T. Schapiro M.D. FAAN Managing multiple sclerosis is about disease managementsymptom 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 physicians 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. Many factors may influence arousal including Mood alterations Lack of imagery Social contexts Religiousspiritualphilosophical Neurological problems Beyond arousal there are many factors influencing sexual function Dysfunction fluctuates with disease activity Reduced libido sexual desire Reduced sensory responsiveness Pain Bladder and bowel dysfunction Fatigue Spasticity and muscle spasms Drugs Relationship discord Physician neglect code of silence Misconceptions on self-stimulation Alteration in body image The nondisabled partner may often have feelings including Resentment Guilt Despair Loneliness Shame Anger Misconceptions Conflicted feelings - Dual role as care- taker and sexual partner All of these psychological factors need to be addressed before looking at physical management of sexual dysfunction to have a successful pleasing and long-term sexual relationship. Only then can the physical issues be addressed successfully. It is obvious to most that men and women are different and management strategies are different as well. In males the major issue may be erectile dysfunction. Management of erectile dysfunction has evolved over time. Two decades ago there was little to be done but surgeons were able to surgically implant penile prostheses. They began as rigid rods placed in the penis and evolved to inflatable balloons which gave very realistic erections on demand. This procedure is not common anymore as medications were discovered that can produce a very workable erection. These began as injections and evolved to pills such as Viagra Levitra and Cialis . In females a major issue may be decreased sensation with numbness and loss of feeling. Vibrators have become more commonly available to provide increased stimulation without a lot of energy expenditure. Lack of lubrication is another common complaint and a number of water-soluble lubricants have been developed to treat the problem. There are a number of devices that aid in stimulation and increase blood flow in the female genital area such as the Eros device that creates a vacuum that pulls blood into the clitoris as it stimulates with vibration. For decades some have suggested that a frozen bag of peas left in the bag when rubbed gently in the clitoral region will decrease pain and increase sexual sensation at almost no cost. Sexual positioning to allow the most comfort and function is essential and requires experimentation and potentially some specific coaching. Bladder manage- ment fatigue management and some- times spasticity management may also be important. MSFocus Spring 20157 MSFocus Spring 20158 All of the above are really important issues in sexual functioning but again the most important issue remains communication.The communication must not only be between partners but also should be open with the healthcare community. This sounds so simple but in practice seems to be very difficult. Sexual dysfunction issues while common are not that often discussed. This needs to change for success to occur. Partners have to be kindly honest with themselves and their partner. If approached honestly and realistically success is likely to occur and couples will have fun along the journey. Randall T. Schapiro M.D. FAAN is President of The Schapiro MS Advisory Group and clinical professor of neurology retired at the University of Minnesota Offering eight contact hours of continuing nurses education this program is co-provided by the International Organization of Multiple Sclerosis Nurses and Nurse Practitioner Alternatives. In order to participate in our program your reservation must be booked through the MSF at the numbers below. 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 MScruisemsfocus.org. Join us Nov. 5 9 2015 for this unique four-night fun and sun Nurses Accredited Continuing Education Program at Sea aboard Carnivals Elation sailing from New Orleans La. to Cozumel Mexico. ITINERARY Thursday Nov. 5 New Orleans LA - Depart 4 p.m. Friday Nov. 6 Education Program Fun Day at Sea Saturday Nov. 7 Cozumel Mexico Arrive 9 a.m. - Depart 6 p.m. Sunday Nov. 8 Education Program Fun Day at Sea Monday Nov. 9 New Orleans LA - Arrive 8 a.m. 13MSFocus Spring 2015 Miriam You know Dottie I find whether you have a chronic illness or not its helpful to keep in mind that intimacy from a psychological perspective simply refers to having authentic experiences with others whether they are positive or negative. Certainly when you have MS it complicates things. There are questions about disclosing at work and to others regarding when and with whom you share personal information and how to cope with intimacy within various relationships as your MS progresses. Dottie Yes we both know that MS throws a monkey wrench into normal experiences. First of all the person with MS must grapple with learning about what MS is. With this understanding one must then consider how to come to terms with their MS accept it and integrate it into daily life and relationships. Then there is the process of coming to know oneself with MS over time. M I agree It takes most people some time to even know what MS is and what it means in their life and how they come to accept it. And then theres the question of what is related to my MS and what isnt Theres a certain amount of your life and energy that youll attribute to your MS that requires realistic adaptation. But as you know people have to be careful to not over-attribute things to their disease. Andof coursecoming to know yourself and how MS affects your life also depends on where you are in life when you are diagnosed and how long youve been living with it. So it can be difficult to tease out what is a real adaptation to MS versus other insecurities you may have surfacing in your relationships that may be related to other things such as being a teenager a young adult a parent etc. D Yes and as a healthcare provider I find just taking time to deal with the physical impact of MS and developing a plan of care becomes the primary focus. The immediate concern is to deal with signs and symptoms or the diagnosis and consider treatments. But you quickly realize its not just the symptoms and securing or adjusting to medications that impact their daily lives but also how MS is changing relationships as well. For some people their clinician may be the only person they share their con- cern about the impact of the illness on their immediate daily life. But not all people have open lines of communication with their providers. Over time how well the person is going to live with MS and deal with others may depend on having the proper support at the right time. I feel strongly that it is wise for the care provider to consider these needs and include or at least offer to include other professionals in the persons overall care such as a social worker or a psychologist whether they have serious emotional problems or not. 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 M I agree. If you are only seeing the medical provider you are only dealing with one part of a persons needs. Dottie what are some of the common concerns you often hear about MS and relationships Love and Fatigue D The big one I hear about all the time is that loved ones or coworkers dont understand the nature of MS fatigue. M I understand that is the most common complaint of those with MS about what their care-partners do not understand. Ive heard it described as bone-wearying fatigue. D I call it bone-crunching fatigue. M Thats interesting. This has implications in all areas of life. For example being too tired can be confused with being lazy or not being interested sexually or emotionally. That can be very upsetting to others which can lead to misperceptions and judgments. D Yes and then theres the concern of fulfilling roles and expectations either on the job with parenting providing income or just disappointing changes in relationships over time. And of course theres the whole impact of changes in physical intimacy over time. Worsening illness and even normal aging can precipitate problems. M Well lets start with intimacy and partners.The MS organizations have a good deal of educational materials available about this online. The take-home message is communication is essential to cope with changes in sexual intimacy and roles with men and women with MS. D Yes. From my standpointyou become similar to a detective as an MS nurse. When someone shares concern for their sexual relationship and attributes it to being too exhausted for sex I try to investigate if their fatigue could be related to not sleeping well or reflective of pain depression worry or bladder problems that might interfere with intimacy. Then we can work on what to do about these symptoms. Getting the conversation started can be the first step toward improvement. M And mental health professionals can tease out the ramifications of anxiety shame and troubles in communicating. So its ideal when we work together as a team.You and I both know from experience that it takes a team. We cant leave it all to the person to figure it out. Teams and Peers D The importance of peer support is another key. Regardless of age and severity of the disease MS support groups can be helpful. M I think peer support is good but also forming relationships with health care professionals is a place to practice relationship-building with others. I think depending on where you are in life there are different concerns with building relationships with MS. For example younger persons have concerns about dating and disclosure. Its difficult to disclose too early or late at work or in new relationships. People youre already close to are going to know and they need to support you so I dont suggest waiting there. D True. Ive heard it said that in a group you need to hear your own voice so not all groups meet the needs of each individual. Too much too soon may be frightening. I have worked with people who had distorted images of MS and disability or think of the one person they knew growing up with MS.MS is diagnosed earlier and there are many treatment 14MSFocus Spring 2015 options now. There is great promise about minimizing disability and hopefulness for the future. M MS is not well understood by others. With new relationships it can compound things. I do find that you need to be a good judge of character regarding to whom you disclose. If unsure at work contact the MS organizations like MSF MSAA and NMSS to learn more or look into discussing the issue with an advocate. As a general rule of thumb I find it is important to not tell others too much too soon until you can judge character or there is a realistic need to tell. Typically others need to develop a context of knowing you and then knowing you with MS. However there is no one size that fits all. Sexual Intimacy M Dottie you know that MS can affect sexual functioning in men and women. There are many things that can help with this but I find the biggest barrier here is communication. Its hard to talk about this. D It is hard and the healthcare provider may not have the time to do so or may convey discomfort with discussing sex so the patient wont bring it up. Cultural changes have made discussing sex less taboo. Nonetheless it is important to be aware that for some such things are not easily discussedparticularly with a member of the opposite sex. Yet MS can affect sexual function. So as an MS nurse I feel this is an appropriate area to discuss and offer to coordinate a plan of care which may include referral to other professionals. There are many psychologists and social workers skilled in helping individuals and couples explore how MS may be affecting sexual intimacy and how to cope with it. The major MS organizations have referral resources for health professionals who know how to explore this and provide resources to improve sexual functioning and intimacy. Many things can be done to improve sexual functioning. Often just having an open conversation can be therapeutic. Then again encouraging communication with a partner is important too. M Yes there are issues of sexual functioning that are directly related to MS symptoms and many of these can be improved by working with knowledgeable professionals. Then there are issues regarding attitudes and negative associations with sexuality that are not directly related to MS symptoms. So again working with a mental health professional who can distinguish these things and help individuals and couples cope can go a long way in improving quality of life and building relationships. 15MSFocus Spring 2015 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. 16MSFocus Spring 2015 Having good relationships especially with those closest to us is essential for good physical and mental health.A lack of strong intimate relationships is associated with depression cognitive decline and increased mortality. A study of the general population found that a lack of strong relationships increased the risk of premature death roughly comparable to smoking up to 15 cigarettes a day. Positive personal relationships have a high trust component. Now that does not mean that every decision or action by the other person is considered favorable by both partners however each partner should believe that no ill intent is meant. Consider the other when making decisions and taking actions. In positive relationships there is consistent collab- oration toward common goals. There is a willingness to be open and vulnerable and to admit when mistakes are made. Life sometimes throws challenges into the mix. We experience stress from daily demands and limitations on our abilities and multiple sclerosis only makes matters worse. We can become angry and irritated with the ones we love.Anger is a secondary emotion coming from three main sources hurt fear or missed expectations. So if we want to continue to experience positive relationships we should avoid causing others pain or fear. A first step can be developing open communication to avoid misunderstandings.This helps to establish and maintain a clear understanding about expectations. This is especially true when partners are dealing with a disease as gripping as MS.This unwanted partner in a relationship shows up at unexpected times. It can change plans at a moments notice. The fact that one looks so good outwardly can bring misunderstandings to relationships. It is helpful to talk about these issues in advance with the well partner and how best to manage when these situations arise. Intimacy can bring anxiety. Intimacy does not have to mean the sexual act itself. Talk about what helps each feel loved. Some people avoid intimate relationships because they fear the unexpected may occur. It helps to think through what is the worst that would occur and then plan how to manage. MS can cause issues such as decreased sensation pain spasms and erectile dysfunction. Fatigue depression and decreased libido can cause intimacy to become a stranger.There are some simple tips. Consider sex at a time of day that is best for both perhaps the morning. Try something different to soothe pain such as medications or a bag of frozen peas which Randy Schapiro M.D. mentions can be helpful. To increase sensation take the time to have fun to warm up for love. By Laura McCatty RN BSN MSCN and Mark McCatty MSFocus Spring 201517 Make an appointment for love hours before the event to get your brain engaged and excited. Turn on your music to feel sexy set the mood and utilize sex toys or vibrators. Take this uninterrupted time and if it doesnt turn out perfectly try something different next time. Laugh at yourselves and dont give up. Although it can be difficult many are going through similar issues. Identify the goals you share. Formulate a plan. Keep working on your goals together. Although it can be embarrassing make a specific appointment to discuss solutions with your MS specialized health professional. You are worth it When trying to maintain positive intimate relationships it is important to understand what the definition of intimacy is for each partner. Each of us may experience that special closeness differently from our partner. Perhaps its holding each other with gentle caresses 20-second hugs throughout the day or even doing the dishes. Human touch is so important especially in a loving relationship. In his book The Five Love Languages Gary Chapman describes how each of us feels love and intimacy. A key for keeping relationships intimate is to understand the language that your partner speaks when they show love. It is the same language that they listen for to receive loving gestures. The book The Five Love Languages speaks about how you give and receive love words of affirmation quality time receiving gifts acts of service and physical touch. Like most good things in life intimacy does not happen accidentally. Make it a priority and plan to develop and nurture intimacy. There are a few simple steps that anyone can take to improve the quality of relationships. The steps may be simple but they are not easy. These steps require time and effort which are not always easy unless it becomes a priority. Here are five steps to take 1. Promote time together as a priority. It is easy to become distracted by daily demands and lose our connection with those important to us. Be intentional about spending quality time with each other without distractions. It is as simple as going out for coffee or sitting closely to watch a favorite movie together. Sometimes it means just sitting quietly to really listen when the other person is ready to talk. Make an appointment or date with each other. 2. Nurture open and positive commun- ication. Jack Burks M.D. a noted authority on MS speaks about the importance of framing the discussion when having conversations with your healthcare team. The value from this frank conversation is to clarify expec- tations for all parties involved. This conversation model is equally important for personal relationships. Openly discuss challenges and concerns in a positive way. This provides opportunities to make adjustments that keep everyone working on the relationship. Greater insight into the other person stronger relationships and progress toward common goals are the positive outcomes from this type of communication. Dont forget to look at each other often as though it were the first or last time. Corrine De Winter. MSFocus Spring 201518 3. Celebrate your differences. Each of us is different yet when we think back that was probably one of the things that attracted us in the beginning. Over time those differences can become an annoyance. It is important to remind ourselves that strong relationships succeed because of our combined strengths. Each person brings a set of talents to the relationship. It is important to acknowledge those differences and learn how to use them for the benefit of both. 4. Stimulate romance in your relationship. Like the old song goes little things mean a lot. Romance does not have to be a big event. Breaking out of daily routine can be exciting and romantic. Understanding and speaking the love language of your partner is important. What can I do to make him her feel loved 5. Forgive ourselves. Forgive others. Another key to intimacy lies in our ability to give each other grace by letting the human tendency to err slip through our fingers like sand. When we lose intimacy its easy to develop a negative image of our partner. Let those negative thoughts go. Being committed and intentional about spending quality time together developing a practice of sharing quality communication appreciating our differences and making romance a priority can lighten the burdens that daily life brings. This may not be the cure for a disease like MS but it can make those symptoms easier to tolerate when one feels loved. Keeping the love in your life is good for your health mind body and spirit. We benefit from having someone support us during hard times and share our joy in the good. It can be difficult holding on to intimacy in a relationship. It does take effort. You get tremendous value. The delight and the comfort from your relationship is worth the effort. Make it a priority Oh the comfort the inexpressible comfort of feeling safe with a person having neither to weigh thoughts nor measure words but pouring them all right out just as they are chaff and grain together certain that a faithful hand will take and sift them keep what is worth keeping and then with a breath of kindness blow the rest away. Dinah Maria Mulock Craik. 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 consultanttrainer 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 Spring 201519 While asking your doctor to treat sexual problems related to MS is important its also helpful to know there are steps you can take outside of the bedroom or the doctors office to increase intimacy between you and your loved one. In the last decade research has shown us the chemistry that happens in our brains when we fall in love and bond with our significant other. Often referred to as the love molecule oxytocin a hormone is typically associated with helping couples establish a greater sense of intimacy and attachment. Oxytocin along with dopamine and norepinephrine are believed to be highly critical in couple bonding. We have learned more as well about how activities other than sex can release brain chemicals that make us feel more connected to our mate. Here are six of them to consider 1 Explore a new place or activity together. Lots of relationship experts suggest that couples that have been together a long time can keep the romance alive with regular date nights. 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 minutes of massage. In this experiment the group was divided in two about half were treated to a deep tissue Swedish massage while the other half had a light massage. Interestingly those who received a lighter massage experienced greater increases in oxytocin than those who had a deep tissue Swedish massage. 3 Enjoy a music night. Listening to your favorite melodies and harmonies can trigger the brain to release large amounts of dopamine a chemical that sends feel good signals to the rest of the body and plays a role in both motivation and addiction. The small study published in Nature Neuroscience used brain scans to show that college students released significantly more dopamine when they heard their preferred music which ranged from Beethoven to Led Zeppelin to the Israeli trance band Infected Mushroom as opposed to someone elses tunes. 4 Dance to your favorite songs. Theres nothing quite like partnered dancing to get your oxytocin fix By Gay Falkowski 20MSFocus Spring 2015 according to Paul Zak Ph.D. professor of economic psychology and management at Claremont Graduate University. In one experiment Dr. Zak drew the blood of dancers before and after a night of dancing. He found that the oxytocin levels of the dancers rose 11 percent regardless of age or gender.This finding and more about oxytocin are included in his book The Moral Molecule. 5 Hug at least eight times a day. Tiffany Field Ph.D. Director of the University of Miami Medical Schools Touch Research institute says The gentle pressure of a hug can stimulate nerve endings under the skin that send calming messages to the brain and slow the release of cortisol. Studies have shown that hugging for 20 seconds raises levels of oxytocin. A hug re- establishes the intimate connection and trust between you and your partner on a fundamental hormonal level. 6 Watch a tearjerker of a movie together. Seeing a powerful movie is the best oxytocin releaser Dr. Zak has found to date. Heres some context When oxytocin is increased by 10 to 20 percent noticeable behavior changes like feeling more relaxed result. Watching an emotionally compelling movie makes oxytocin surge 47 percent. Why Our brains process the plot and characters as if they were in the room with us Dr. Zak says. LIGHTWEIGHT DISCREET COMFORTABLE POLARProducts 1.800.763.8423 www.polarproducts.com PolarProducts PolarProducts POLAR1.800.763.8423 Fashionably Cool Polar Products is a leading worldwide manufacturer of body cooling systems for MS and a proud supplier for the MSF Cooling Program Polars 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. Polars Fashion Cooling Vests for Men and Women 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 wont cramp your style Dont put it off. Youll love it. - Terri in CA since 1984 Gay Falkowski is the former Managing Editor of MSFocus and editorial coordinator for MSFs 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. 21MSFocus Spring 2015 George Foreman III and Mary McAlary join forces to tell a story of struggle and triumph in The Fighting Spirit The Art of Winning Your Fight. A professional fighter in his own right Foreman is the son of the legendary boxer and the founder of The Club a fitness facility in Boston. McAlary is a certified holistic health coach a former real estate agent a wife mother and grandmother of four. The two met in Foremans club and eventually came together to collaborate on a short punchy book that delves into McAlarys fight with MS. At 100 pages the book is a two-day read filled with practical information. It is built around 12 Fight Laws which are meant to echo the 12 rounds of boxing. Several chapters include Feed the Fight sections that offer tips or sources of information of use to the reader. This 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 the narrative hangs. Two other themes that emerge are the importance of lifestyle and community when struggling with multiple sclerosis. The value that unites and underpins the books themes is personal responsibility. McAlary tells a very personal tale that reveals how being confronted with choices offered her liberation. Her family members especially her oldest daughter and her doctor formed the team that has gotten her where she is now which is much more functional than when she was first diagnosed with the disease. The book does a good job in offering a strong story meant to inspire the reader to join the fight against MS and take control of their response to the disease. Find the interview with the authors on MSFocusRadio.org on Thursday May 21 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. By George Foreman III and Mary McAlary Authors Help Patients Strike a Blow Against MS MSFocus Spring 201526 KickKickKickKICK Cindy Brenden tells herself to try harder as she struggles to keep her head above water. Thoughts flash back to happy days diving and fishing with dad. Life was easy then without MS. But even after decades of living with this frustrating disease Cindys a fighter. Shes tired yet determined to get kissed by a dolphin in Curacao the last stop on the MSF Cruise for a Cause . One strong kick puts her in perfect position. There it is A peck on the cheek Cindys going home with a memory likely to inspire her long after this cruise has ended. As Cindy and others have discovered the MSF Cruise for a Cause is all about MEE Motivating Educating and Empowering.Yetmany participants arrive on the ship unaware that the people they meet the information they learn and the 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 Caribbeans 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 learn about better living with MS from two of the countrys most esteemed MS neurologists Ben Thrower M.D. and Randall T. Schapiro M.D. Hello My Name Is _______ Registration in the ships spacious conference room the first evening is like an annual family reunion.Theres so much catching up to do MS may be the common bond among these travelers but it doesnt always dominate their conversations. Karma Threet a second-time attendee with her husband Toby talked about a Music for Healing and Transition Program she enrolled in to become a Certified By Gay Falkowski Sailing to New Horizons MSFocus Spring 201527 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. Youre not trying to cure she explains.Youre trying to provide peace and comfort. Veteran MSF cruisers Betty and Gail Gibson have been busy traveling enjoying their hobbies hippotherapy for Betty and archery for Gail and having fun with neighbors in the Villages Fla. Theyre happy to see that friends Kerry and Ed Buckley also veteran cruisers made it out of New York and into San Juan before a massive snowstorm hit. It was close says Kerry. Were just glad to be here. So are others who came from the cold.Sunshine and the tropics ahead First-time attendee Mary Montgomery is less enthusiastic. She reluctantly came along with daughter Julianne Carter who was diagnosed with MS last year. Mom and daughter dont always agree on whats best for Julianne.I wasnt crazy about this idea she says looking around the room. Its still early though. Over by the registration tables women who bonded during an MSF cruise many years ago get ready for a fun first night. Theres Sharla LaFountain Jackie Connell Rhonda Buckeye Mason and Denise Rios. Denise is bursting with important news I got a new dog she says. And a man came with it. Ray Petro and Denise met on a dating website for singles with disabil- ities and after months of commuting across the state decided to live together in Melbourne Fla. Though she enjoys her gal pals having Ray with her on the cruise means so much to Denise. Years ago as she and her husband were planning their first cruise with the MSFhe passed away.The next year Denise cruised solo with the MSF and has been a regular ever since.It wasnt easy at first but I didnt want to stop doing things she says.Ray speaks affectionately of Denise and is happy to be along for the cruise. He wants others with disabilities to know theres always hope for romance. Love is in the air AttentionThis is Your Captain Speaking Between announcements over the loud speakers and the Daily Compass itinerary delivered to staterooms travelers know when and where to find fun a Beatles tribute show a 70s dance party formal nights trivia contests game shows MSFocus Spring 201528 karaoke live bands a piano bar food food and more food. Theres 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 Davidexplores the island. Shes heading to the ships spa for a nice long massageahhh. During the educational programs massage therapist Martha Rojas offers MSF cruisers complementary 15-minute massages. The need to slow down was motivation for Ingrid Philpott to join the cruise. Its been a hectic month. I needed time to relax to breathe she says. Even so shes disembarking in St. Thomas to connect with family that lives there. In fact shell be visiting family in every port but Aruba Others including first time participants Mindy and Jeff Beach cant wait to shop on St. Thomas. Having survived the dreaded travel from Kentucky shes ready for some fun.Ive had a fear of traveling in a chair she says. All of my fears came true but I made it. Empowering. While shopping on St. Thomas is a popular pastime those venturing beyond rows of stores by the pier find an island of tropical charm including the world- famous beach and turquoise waters of Magens Bay. A few explore the nearby island of St. John known for its unspoiled beauty. I Get By With a Little Help from My Friends As the ship sails away from St.Thomas MSers gather for a support group meeting led by MSFAmbassador and MSF-affiliated support group leader Nick Marchesani. Loved ones meet separately in a caregivers session led by MSF Director of Programs and Services Natalie Blake. Kathy and David Brandstad are eager to connect with others. After their support group at home disbanded they didnt socialize much. Kathy who has a doctorate in clinical psychology realized she MSFocus Spring 201529 was isolating herself. Meeting people who have the same situation as we do that was a big reason we came here. Were looking forward to the social opportunities David says. Spoiler alertKathys kooky pepperoni pizza hat wins an iPad in the crazy hat contest at the farewell party. Now thats 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. Shes right. Support is everywhere on the MSF cruise and no ones a bigger cheerleader for overcoming MS than certified Zumba in Chairs instructor Nick Marchesani. In daily morning sessions on balance and exercise Nick shares how he kicks MS to the curb with spunk and strength. Turn up the volume Were beatin MS now because were not stayin home. Were getting out he shouts. Woo-Hoo the audience members holler. Motivating. After a morning dose of Nicks high energy who doesnt want to explore the island of St.Kitts Jagged volcanoes soaring above turquoise seas dense rainforests in many shades of green rolling fields of sugarcane this is the islands landscape. Brimstone Hill Fortress called the Gibraltar of the West Indies is one of the most popular sightseeing tours. And then theres 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 Spring 201530 Netsey Pisani recalls relaxing on a Caribbean beach several years ago soaking up the sun and arguing with daughter Brooke about taking her MS treatment shots. A man sitting next to them chimed in Well if you were my patient. And thats how Brooke Pisani met the doctor who would take charge of her MS care Dr. Ben Thrower. The drive from the Pisanis home in New Iberia La. to Dr. Throwers Atlanta office is 10 hours but worth it the Pisanis say. Dr. Randall Schapiros legacy lives on in the hometown of Kathy and Jeff Parker through The Schapiro Center for Multiple Sclerosis at the Minneapolis Clinic of Neurology. So theyre thrilled to meet Dr. Schapiro and hear him 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 for the past 43 years remembers when patients had few choices to make because there was no knowledge about the disease. I didnt know what I didnt know he says.Though knowledge of MS has grown his motto remains the same Live it up Thats what this cruise is all about. Living it up in the Southern Caribbean Melinda Warren of Gainesville Fla. had never been to the Southern Caribbean. Recently retired from a 35-year nursing career she was easing into a new lifestyle when an MSF cruise advertisement caught her eye. Aruba Curacao Sign me up Since her husband had to work Melinda brought her son Zach along on the cruise. Were having some quality mother and son time she says. On a sunny breezy day mother and son are happy to be on the See and Sea excursion as they explore Aruba. About a dozen others from the MSF cruise are among the groupenjoying the camaraderie. California Lighthouse Casibari Rock Formations and a natural bridge formed by wind and waves. After a short boat ride 31MSFocus Spring 2015 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 waters surface. Next up Curacao. While some opt for island tours many MSF cruisers enjoy rolling or strolling across the Queen Emma Bridge aka The Swinging Old Lady a floating pontoon bridge that links the two sides of Willemstad. The capitals Dutch-influenced architecture makes a great backdrop for photos as MSF s t a f f m e m b e r Sean Giblin and his parents Robin and Debra Giblin discover as they make their way back to the cruise ship. No need to tell Sean to smile as he always does camera or no camera. So Long Farewell The end always comes too quickly Still the mood is festive in the Imperial Lounge for MSF Happy Hour. Its time to exchange contact info enjoy some complimentary cocktails and hors doeuvres judge crazy hats and share some good memories. The thing Ive enjoyed most is meeting people who are in the same situation Im in and talking with them about how they handle things says Julianne. Her mom Mary admits that despite her early doubts she really enjoyed the cruise. It was much better than I expected she says with a smile. What did she like most Seeing Julianne enjoy herself. She doesnt get much of that anymore. After presenting Drs. Thrower and Schapiro awards of appreciation MSF Co-Executive Director Alan Segaloff recognized and thanked participants whose generous donations have made this cruise possible for others Kathy 32MSFocus Spring 2015 and Jeff Parker and Carol Cetrino. The Parkers say its rewarding to know their donation allows others to experience an MSF cruise. As for Carol she was once on the receiving end of a cruise donation. Now that her financial situation has improved Its my turn to pay it forward she says. 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 cant wait Chances are good Mindy will leave the ice fishing to Jeff though. Rhonda Mason is excited too. She says with a twinkle in her eye that next time she just may bring a new travel companion. Well keep you posted To be continued in Alaska 2016. Explore some of the most exciting and scenic areas in North America onboard Celebrity Cruise Lines 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 Alaskas 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 Foundations program aboard the ship your stateroom must book through the MSF at the above numbers. 33MSFocus Summer 2014 Akia Well when I was first diagnosed I had very painful muscle spasms that came like seizures only on my left side. I couldnt have sex with my boyfriend because of this. It was horrible I was no longer close to my boyfriend of three years. Since then I moved and got better treatment and dont have muscle spasms when I have sex. Lisa My husband is too kind hes always afraid that he will hurt me or that hes preventing me from getting sleep. Susan I am numb on my right side from my scalp to my foot so half of my lady area is as well. Due to experimentation and exploration of the numb areas great sex is still possible with a patient partner Ebonie The only problem I am having is severe dryness. We have to use lube now. James Sara To tell you the truth Id have to say dryness is the issue. Its a headache to really want to in your head but your body just wont comply LOL. On the other hand since we have to use a lube most times it has opened up the door to experimenting with the different ones on the market. Some are hot some are cold others are....well go get your own and read the box LOL Kelly About six years into my diagnosis I could no longer support myself on top of my husband so weve adapted to him either being on top or both of us on our sides facing one another. Hes pleased and Im pleased that he never complains Nicki I have two main issues dryness AND hyper-sensitivity My man and I try to laugh at the fact that I will flop like a blue gill when touched in certain spots depending on the type of touch as well. And yes the vagina can be one of those hyper-sensitive places. Oh joy Peggy For me its just the pure exhaustion when I go to bed. I go to bed too late anyway and dont get enough sleep but I am very territorial with my sleep time and dont want to share it even if sex is the alternative Also if I fall asleep early in the evening trying to rouse me is like placing two sticks of TNT in each ear. Facebook Feedback is your chance to share your experiences related to topics covered in the MSFocus. Like our Facebook page at www.facebook.comMultipleSclerosisFoundation 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 Connect with us. Share your thoughts and insights with the MS community on our Facebook pages. Like us at www.facebook.comMultipleSclerosisFoundation and www.facebook.comgroupsmsfocus. MSFocus Spring 201537 For most people living with multiple sclerosis its easy to talk about the day you were diagnosed symptoms leading up to your diagnosis and experiences youve had with disease-modifying medicines. But the conversation can get quite complicated when questions are asked about intimacy and MS. Suddenly your comfort zone is compromised and the discussion is getting too personal. Its too close too intimate. No longer is the discussion focused on your individual stories. Theres another person such as a spouse partner or significant other involved in your MS experience. Perhaps its more accurate to say the conversation about intimacy and MS is two personal. Its two close two intimate. Dictionary.com defines intimacy as A close familiar and usually affectionate or loving personal relationship with another person or group. Its a term that is easily defined but often MS and its related issues can interfere with the simplest things in life even kissing. We barely kissed on the lips during the first eight months of 2014 but we had never felt closer to each other than we did for those 242 passionately kissless days. It wasnt as if distance was keeping us apart. We lived ate slept and spent time together the same as any married couple of nine years. But we are living with something that not every other couple lives with we both have MS. Technically it wasnt the MS that interfered with our passionate kisses. It was that pesky MS-induced trigeminal neuralgia a relentlessly painful irritation of the trigeminal nerve that Jennifer was experiencing. While only a small percentage of people with MS have TN those who get it experience it in a very big way. Jennifer couldnt brush her teeth without pain eat sweets without wincing or sleep soundly without being awakened by a violent sensation of electricity running through her right cheek and molars. Oh yeah and kissing Dan was about as comfortable as chewing on aluminum foil. Just like that the kissing instantly stopped in a married life where we were madly in love. That is until after Jennifer underwent gamma-knife surgery to remedy the TN. But never once did Dan fear there was trouble in paradise or that Jennifer no longer loved him. Honesty empathy listening and patience were keys to weathering this and every other storm that MS brewed up in the intimate atmosphere of a close relationship. We no longer could kiss on the lips but we soon found new ways to express intimate feelings for each other. Tighter and extended hugs falling asleep while holding hands and Dans gentle kisses on Jennifers forehead were the expressions of love that sustained us. These simple and meaningful acts actually pulled us By Dan Digmann and Jennifer Digmann MA closer together emotionally than we imagined was ever possible. Maybe it was because each act was rooted in the shared understanding that we are strongest when were together in our fight with MS. Kissing Denied. Intimacy Redefined. These are opportunities that everyone living with MS has take control and give new definitions to all that once was familiar about intimacy. The reality is that intimacy was part of our relationship less than four hours after we first met. We actually were introduced to each other at an MS-related event 12 years ago. We made an instant connection as two younger people living with this chronic disease. And when Jennifer needed her mothers assistance to use the restroom it wasnt weird or creepy when Dan offered to help with the wheelchair transfers. It was a comfortable and kind gesture toward a newfound friend in need. MS can create physical barriers such as Jennifers wheelchair and Dans fatigue but weve learned throughout our marriage that nearly everything is possible when it comes to maintaining an intimate relationship. Its all about transforming the ideas of intimacy and making them your own. Jennifer no longer can stand on her own but we still go dancing. She stays seated in her chair but were holding hands the entire time we boogie always connected. When were at the baseball game and the seventh inning stretch comes around Dan helps Jennifer stand as we sing Take Me Out to the Ballgame in a never ending embrace. Such a show of love would seem ripe for receiving a citation for a public display of affection. But we own this intimate moment and nobody ever will dare take it away. Notice we havent yet mentioned anything about sex. Sure its one of the elements of intimacy in our marriage. But theres more to intimacy than that and like everything else weve redefined that to make it our own in light of the disease we share. As we said before honesty empathy listening and patience are keys to weathering the storm that MS brews up in the intimate atmosphere of a close relationship. 38MSFocus Winter 2015 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. Thank You to the following companies for providing support for the MSFs 2015 National MS Education and Awareness Month activities 39MSFocus 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 MSFs 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 years 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 dont 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 Adapting Your Home to Living with MS with Carol Siebert MS OTRL FAOTA 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 Spring 201540 The MSF staff was in high gear throughout the month of March bringing fun and informative programs to MS communities across the country. This years 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 years presentations were provided by Multiple Sclerosis Foundation staff members and focused on advocacy. People with MS wanting to make a difference learned there is strength in numbers and that small interventions can lead to building something new and better. Attendees enjoyed the opportunity to connect with others brainstorm and share ideas. Problems with municipal transportation and local ADA compliance were nearly universal themes among attendees this year.They also noted their interest in MSF programsand the ongoing Orange4MSF campaign proved to be a big hit. This years awareness month events provided the opportunity to build a stronger MS community helped fill the need for people with MS to interact with those who can understand their experiences and 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 cityscape in the middle of the desert provided an intimate setting for the MSFs first visit to Utah. On March 4 in the Best Western Abbey Inn problems with insurance stood out as a local issue. Attendees included veterans of the disability civil rights movement. MSF- affiliated support group leader Darlene Trotsky greeted people and introduced herself to the crowd informing them of upcoming events. Las Vegas At the end of a world-famous stretch of streets marked by flashing lights and tall buildings with people moving in every possible direction large-screen TVs and an assault on every one of your senses at every moment 100 people packed the house on March 5 at Fogo de Cho Brazilian Steakhouse. Four MSF-affiliated support groups were represented at the event along with their leaders. Also in attendance was Gina Brown who works for the city of Las Vegas who also has MS. She offered MSFocus Spring 201541 helpful information about approaching local lawmakers to event attendees. A big local issue was the lack of health and wellness programs for people with MS.The lack of regulatory clarity on handicapped parking was another salient point for the audience. The process of appealing an insurance ruling also featured prominently. Atlanta It was a clear warm day for the more than 40 people who attended the March 10 event at the Sheraton Perimeter North Hotel. In some cases attendees drove an hour to get to the event and there were both new and familiar faces in the crowd. Housing and homecare were significant local advocacy issues for those who attended the event. After a question and answer session MSF Ambassador Ashli Hopson left in photo took the opportunity to address the audience. She drove home the purpose and benefits of the MSF and her role as an ambassador. Los Angeles 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 MS caregivers and family members. It generated enthusiasm for the creation of an action group to address a dispute with a managed care agency regarding the merits of the continued use of an MS drug after it allows patients to become stable. Participants kindled a desire to seek others willing to advocate with them. MSF staff 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 deter the nearly 30 people who attended the event on March 18 at the Best Western Grand Victorian Inn. For those in attendance accessibility and parking were major concerns. Being persistent in following through on ADA complaints was an important lesson during the gathering. On the problem of parking questions arose regarding who had access to the handicapped spaces and concerns about them being located too far away from facility entrances. MSF-affiliated support group leader Pam Secrist and MSF Ambassador Ariana Deming were on hand to help make the proceedings memorable. 42MSFocus Spring 2015 Joplin Mo. Unafraid to show his devotion to the cause11- year-old Zane Newman scooped up a number of awareness kits in his arms during the March 19 event at the Butchers Block Banquet center. The advocacy event coincided with the meeting of the MSF- affiliated Show-Me State MS support group and was attended by 27 participants including Trevin Thompson and Stormi Newman both of whom talked about coping with MS in their families. Specific issues for the group included the lack of electric carts in local stores the red tape involved in local area programs for people with disabilities and raising awareness in the community. Westminster Colo. 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 Rubright donated rides as raffle items at the event worth 25 each. Specific local issues included the financial aspects of gaining government aid the lack of cooling tents at local events during hot weather the lack of benches and places to sit in stores and the general lack of affordable accessible housing. Newport News Va. Nestled in a region rich in Navy history more than 50 people turned out on a bright warm afternoon on March 25 for the presentation at the Marriott Courtyard. MSF Ambassador Ann Pietrangelo was introduced to the audience and she discussed the support the foundation has to offer. Many in attendance shared their personal experiences with MS.A psychiatric nurse shared her experience about how the disease has affected her cognitive abilities. A man who works with the Centers for Independent Living shared information about programs available in Virginia for those with MS.An important advocacy issue addressed at the event was the problem of medication denial by insurance companies. The event stressed the importance of getting the doctor involved in the process. Tampa Fla. On a sunny Florida afternoon at the height of spring break more than 20 people turned out on March 26 at the Residence Inn Tampa Northpointe Conference Center to listen to Dr. Katherine Standley D.O. at the Florida Medical Clinic as she discussed the topic Hormonal Changes for Women with MS. Issues included the role of three central hormones the research on the MSFocus Fall 201443 effects of estriol on disease progression and the lack of information on MS and menopause. Susan Struder support group leader for the West Pasco MS Support Group in New Port Richey Fla. addressed the audience and discussed upcoming projectsincludingaDragQueenBingoevent. Coconut Grove Fla. It was a brisk sunny morning as nearly 50 people turned out for the MSFs March 28 sailing event at Shake-a-Leg. The day focused on adaptive sailing and fun for those with MS and their families. While most of the participants took the opportunity to go out to sea on a large pontoon boat many brave souls went out on one of the smaller sailing vessels. Shake-a-Leg founder Harry Horgan took the opportunity to introduce himself and his organization which sponsors programs for special needs and lowincomeparticipantsranging fromsailing and kayaking to marine science classes. Iselin N.J. Nearly 20 people braved the chill and a touch of rain for the advocacy event on March 31 at the Renaissance Woodbridge Hotel. In attendance were MSF Board Member Charles Eader pictured right and MSF affiliated support group leader and MSF Ambassador Nick Marchesani each of whom took the oppor- tunity to speak to the audience about the MSF and the programs it offers. The main issue for those in attendance was the denial of claims by insurance companies. Eader also took the opportunity to mention that with local elections on the horizon now is the perfect opportunity to approach legislators on issues in New Jersey. In addition to educational programs awareness was raised through fundraising events. That includes Jersey Mikes Subs. For the second year in a row four of their South Florida locations spread the word of National MS Education and Awareness Month through donations and customer discounts. On March 13 the Fort Lauderdale Jersey Mikes Subs location held a half-way party that included flyers and oranges to entice customers to participate. On March 25 the company held its annual Day of Giving in which 100 percent of all sales are donated to their charity partners. A huge Thank you goes to Hillary Hutchinson and the Jersey Mikes Subs staff at the Deerfield Beach Parkland Coral Springs and Fort Lauderdale locations. Our thanks goes out to our corporate sponsors for providing support for these programs and the thousands of people across the nation who joined us in spreading MS awareness. We appreciate the time and effort you provided in helping us deliver our message of advocacy and community among those affected by MS. Lets keep the momentum going If you would like to be involved in ongoing advocacy efforts email awarenessmsfocus.org to find out how you can help 44MSFocus Spring 2015 I never want to lose my tan. Is that because I feel I look good with it Am I vain Well yes of course. But theres a better reason. I live in Chicago the snow capital of the Midwest. So everywhere I go strangers and friends alike ask in an exaggeratedly loud voice Where did you get so tan The answer I get to give is this I got it on a 67-foot racing yacht travelling from the Panama Canal to the Galapagos Islands. You were on a cruise they ask. I get to reply No I sailed the boat. I have MS and there is an organization in Denmark called Oceans of Hope that has organized a circumnavigation of the earth using people with MS like me as crew. There are various legs and I was incredibly lucky to get my number one bucket list item the Galapagos Islands. It still feels like a dream. Thats how the conversation goes and thats why I dont want to lose my tan. Well and theres that vain thing too. Nowhere I could list the amazing things I did and the sights I saw but that has nothing to do with the life change. It was life-changing because the Oceans of Hope is aptly named. For me at age 58 I had tucked away my hopes and dreams. Very quietly I let them slip away. My life had been spiraling down for so many years. I just figured that nothing good was ever going to happen again. Sure I kept a smile on my face but in my heart I had become ruled by MS. I still worked hard at keeping my body in shape and eating the right foods to battle the onslaught of the disease. Daring to think that there would be something to look forward to on the level of an Oceans of Hope trip was totally out of the question. What is it for you I wish I could _____ fill in the blank. I now feel like I can fill in my blanks.The confidence based on accomplishing this has made a different Colleen one whom I struggle to describe. An attitude change By Colleen Fegan Editors 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. 45MSFocus Spring 2015 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 salesmanufacturing firm in the medical industry. Surely yes. But more. My heart is open wide to what is possible with MS no despite MS. I spent many days surrounded by so many different types of people with one common denominator MS. You know we rarely talked about it even though it was a guest at our dinner table each night. On this leg of the voyage we had a doctor of psychology from Oxford a business owner from London an executive from Copenhagen a mom of three from Denmark as well as another business executive from Denmark. It only took moments for we to become us. The boat also had three permanent crew members and a neurologist on board. They were us too. We stuck to discipline lifted and toted did our jobs and we laughed so much. You have to try and use the head bathroom on a rolling boat when you have MS. Its very funny. How much hope fills an ocean What helps us along Is it one person like Mikkel Anthonisen who is behind the founding of Oceans of Hope or does it come from within Both probably. For most of my life I have not been an introspective person. Life before and after diagnosis I have put one tired foot in front of another waiting for the end of the day. This journey has helped me see that hope is necessary in our lives. It needs to be taken out regularly and nourished. I was lucky Oceans of Hope will keep my hope well fed for years to come. What will I do I am not sure this article for one a new business for another. As I sat on the deck of a beautiful boat on the way to my dream location I felt that things like this were not supposed to happen to me.These things happen to other people not me surely not me. It did happen and theres proof. Please go to Oceans of Hope on Facebook and scroll back to my photos. I even got to do the whole Titanic pose thing. When you are on the prow of a boat you cant not do it. Then please figure out where your Ocean of Hope is. Do you like to sail Ski Some other activity you have written off because of your diagnosis Learn about your secret hopes and dreams that may have been tucked away over time and go after them. If you need a push look at the smile on my face in these photos. In fact if you know anyone with MS and everyone does they are still looking for crew members. The web address is sailingsclerosis.org Twitter handle is sailingsclerosis and you can find them on Facebook at facebook.comOceansofHope. 46MSFocus Winter 2015 When my two children were young I always felt tired and sleep deprived. Jamie and Andrew were normal active infants and toddlers but they were not great sleepers. I still vividly remember how my husband Dave and I took turns sleeping-in on weekend mornings. It did help but I looked forward to a time when the children were more self-sufficient and needed me less. When Jamie 5 and Andrew 3 were in preschool I was diagnosed with multiple sclerosis and the word tired took on a whole new meaning. It was impossible to keep up with the children no matter how much sleep I had. I had to find new ways to take care of the children given my limited energy and stamina. If health problems limit your ability to take care of your little ones perhaps some of my tips might help you. 1. Find a space in your house that can be used as a playroom. You can keep your eye on the kids and the mess they create is contained in one area. 2. To eliminate packing the kids up and taking them out I invited another mom and child over. These moms were also my friends and knew of my health problems. Wed sit where we could see the children and visit while they played. 3. At times I hired a neighborhood child as a mothers helper to come over after school to play with the kids. I was still in the house should they need me. However I might be resting or having my quiet time. 4. From the time the kids were very young we played board games while I reclined on the couch or was lying in bed. When I couldnt reach or grasp the game pieces the kids moved the pieces for me. 5. When the children wanted to have a friend over to play we talked about who would be a good choice. Some of their friends needed more supervision than others. 6. When we could arrange it the kids were involved in indoor sports ice skating gymnastics tennis soccer swimming etc. especially during seasons when they couldnt play outside. Since I was no longer able to drive I asked other parents if they would have room in their carpool for my child. People were amazingly kind and inclusive. Because I felt awkward asking for help I offered to help pay for gas. Today my children are grown up with children of their own. As a grandmother I have embraced the Digital Age of computers smart phones and 247 cable TV with 200 channels on all sorts of topics. Technology has added a unique new twist for todays parents and grandparents. Since I still cant depend on my head and heart to agree with my By Shelley Peterman Schwarz energy and stamina I use technology to keep the children engaged. Whether its 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 Im spending quality time with my darling grandchildren and I love how we are making memories and learning new things from each other. Shelley Peterman Schwarz lives in Madison Wis. She is the award-winning writer and author of 7 Tips for Making Life Easier books A columnist for the Wisconsin State Journal newspaper and a monthly guest on the CBS affiliate in south-central Wisconsin WISC-TV on New 3 at Noon. She was diagnosed with primary-progressive multiple sclerosis more than 30 years ago. She said even though Im severely disabled due to MS I lead a happy unlimited life. Ive made peace with the many loses that Ive had. 47MSFocus Winter 2015 Pretty Waterproof Leak and Stain Resistant Panties. To deal with occasional or frequent Stress Incontinence Urgency Incontinence Over Active Bladder Heavy Menstrual Cycles Do you have Laugh Cough or Sneeze incontinence You Deserve the best Vv SkiVvys are Eco Friendly Wash and Dry. Made in the USA www.VvSkiVvys.com Enter Promo Code 4MSF2U To receive a discount and help MSF a portion of every sale will be given to the MSF Please help our cause... THE PRETTIEST PROTECTION YOULL EVER WEAR... 22MSFocus Winter 2015 22MSFocus Winter 2015 51MSFocus Winter 2015 By Ellen Whipple BS Pharm.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 disease-modifying drugs decrease the number and severity of relapses in patients with relapsing-remitting multiple sclerosis but do not entirely eliminate them. Consequently many patients with relapsing-remitting multiple sclerosis experience relapses disease progression and accumulated neurological disability while receiving these medications. Three year data from the Phase II multicenter HALT-MS trial suggested treatment with high-dose immunosuppressant therapy followed by autologous hematopoietic stem cell transplant may improve patient outcomes beyond what the currently approved disease-modifying drugs can offer by inducing sustained remissions. Three-Year Findings The purpose of the HALT-MS study was to determine the effectiveness of high-dose immunosuppressant therapy using carmustine etoposide cytarabine melphalan and rabbit antithymocyte globulin followed by autologous hematopoietic stem cell transplant in patients with multiple sclerosis. In the study patients received high-dose chemotherapeutic drugs that suppressed the immune system followed by blood- forming hematopoietic CD34 stem cells which were collected individually from the patients prior to the administra- tion of the high-dose chemotherapeutic drugs. The transplantation of the auto- logous hematopoietic stem cells were necessary to prevent the long and HALT-MS Trial Hope or Hype Treatments High-dose immunosuppressant drugs high-doses of drugs that suppress or reduce the strength of the bodys immune system Autologous Hematopoietic Stem Cell Transplant stem cell transplants that utilize the patients own stem cells MSFocus Spring 201552 prolonged periods of low blood cell counts that occur after the administration of high-dose chemotherapy.After receiving the high-dose immunosuppressant therapy and the hematopoietic stem cell transplant patients were not given additional disease- modifying drugs. Twenty-five patients were enrolled in the HALT-MS study. Final result will be available after five years of treatment. Three year results were recently published for 24 patients. These results are available in the December 2014 issue of the Journal of the American Medical Association Neurology which is available online at httparchneur.jamanetwork.comarticle .aspxarticleid2084840. While this study is still ongoing it is no longer recruiting patients. The majority of patients were diagnosed with multiple sclerosis during the last 15 years. All patients experienced clinical relapse with loss of neurological function while receiving currently approved disease-modifying therapies in the 18 months prior to enrollment. The primary endpoint of this study was event-free survival survival without death or disease progression from confirmed loss of neurological function clinical relapse or new lesions on MRI. At three years event-free survival was 78.4 percent. Other endpoints in the study included EDSS progression-free survival and clinical-relapse free survival. At three years progression-free survival was 90.9 percent and clinical-relapse free survival was 86.3 percent. In addition EDSS scores MS Functional Composite Scores and MS Impact Scale quality-of- life scores were also improved. According to the authors of the study Adverse events were consistent with expected toxic effects associated with high-dose immunosuppressant therapy followed by autologous hematopoietic stem cell transplant. These toxicities included both Common Terminology Criteria for Adverse Events CTCAE Grade 3 events severe adverse events and CTCAE Grade 4 events life-threatening or disabling events. More specifically there were 130 CTCAE Grade 3 events and 94 CTCAE grade 4 events Hope or Hype The three-year efficacy results were very impressive especially since high-dose immunosuppressant therapy followed by autologous hematopoietic stem cell transplant was a one-time treatment. If the four-year and five-year data are consistent with these findings larger studies will still be needed to confirm the results. If these findings are confirmed in larger studies high-dose immuno- suppressant therapy followed by autologous hematopoietic stem cell transplant may become a potential therapeutic option for some patients with relapsing-remitting multiple sclerosis particularly those who have not responded to the FDA- approved therapies. The toxicity profile of the high-dose immunosuppressant therapy is the most concerning factor. During the three years of this trial the 24 patients experienced more than 200 CTCAE Grade 3 and 4 events. These toxicities are generally not seen with the first-line injectable disease modifying drugs. The long-term effects of the high-dose immunosuppressant therapies will also need to be considered. For example many immunosuppressant therapies have been linked to blood cancers MSFocus Spring 201553 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 Childrens 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. specifically acute myeloid leukemia and myelodysplasticsyndromesand reactivation of latent viruses. To fully understand the long-term effects of the high-dose immuno- suppressant therapy patients will need to be monitored for many years after the study is completed. So for now the jury is still out. Stay tuned. For more information on this topic see page 70. Additional Resources www.halt-ms.org hwww.clinicaltrials.govct2showNCT00288626termhalt-msrank1 54MSFocus Spring 2015 The ever-changing landscape of federal regulations medical technology and insurance coverage can make ones head spin. This column spotlights government resources available to qualifying people who have multiple sclerosis and other chronic illnesses. The Center for Medicare Advocacy Medicare is the national healthinsurance program to which all Social Security recipients who are either 65 years of age or older or permanently disabled are entitled. Individuals disabled by multiple sclerosis are eligible to receive Medicare benefits. Medicare can be confusing even for people who are familiar with our nations health care system. The Center for Medicare Advocacys website hosts an information section that has what you need to make informed decisions. The CMA established in 1986 is a national nonprofit nonpartisan law organization that provides education advocacy and legal assistance to help senior citizens and people with disabilities like MS obtain fair access to Medicare and necessary health care. Online at www.medicareadvocacy.org about visitors can learn about Medicare and its services the differences between Medicare and Medicaid and eligibility requirements. Individuals with MS can qualify for Medicare coverage before age 65 if Social Security determines that they are permanently disabled and they have received Social Security disability benefits for 24 months. People with MS will also be eligible for Medicare when they reach age 65 if they receive Social Security benefits. The CMA website is at its most detailed when it comes to coverage of MS under Medicare. It is a myth the website states that people with long-term illnesses and those in need of long-term care are not covered by Medicare. It is true that Medicare often denies coverage to individuals with chronic conditions on the grounds that their condition will not improve and or that the services are to maintain not to improve their condition. The CMA website describes the typical reasoning given for denials of coverage and a short entry on what can be done to contest a Medicare denial. The Centers work includes Representing thousands of individuals in appeals of Medicare denials. Responding to approximately 7000 telephone and email inquiries each year. Producing a wide array of electronic and hard copy educational materials. Advocating in administrative judicial and legislative forums. Pursuing Medicare coverage for individuals and for dually eligible beneficiaries individuals who are eligible for both Medicare and Medicaid. 55MSFocus Spring 2015 A complete list of the Center for Medicare Advocacys publications and products is available on their website at www.medicareadvocacy.orghidden products-services. These items include topics on the Affordable Care Act basic introduction to Medicare chronic conditions home health and long-term care. Let us know what you thought of this article Email your comments to editormsfocus.org or mail to the address on the back cover Attn MSFocus Letters Column. Listen to the Sound of Our Voices on Maybe youor someone you care forhave 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 chris.pmsfocus.org 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 kaseymsfocus.org for consideration. 56MSFocus Spring 2015 North to Alaska Cruise for a Cause 2016 Sail with the MSF to Alaska Americas final frontier. Explore some of the most exciting and scenic areas in North America onboard Celebritys Solstice while attending one of our many motivating educating and empowering programs presented by MS experts. Book early to assure a stateroom of choice on the 2016 MSF Cruise for a Cause a seven-night cruise departing from Seattle on May 20 2016. Take the opportunity to visit with old friends and make new ones as we navigate the Tracy Arm Fjord. See the Alaska wildlife as we visit Juneau. In Skagway take a ride on the White Pass and Yukon Route Railway. Stroll through Ketchikan Alaskas first city and the salmon capital of the world. For more information or to make a reservation contact Gabriela Aragon at Aragon Travel at 888-408-4129 or email gabrielaaragontravel.com. Backing MS Research Bill As mentioned in As We See It on page 4 the MSF together with our fellow members of the Multiple Sclerosis Coalition supports the Advancing Research for Neurological Diseases Act of 2015 H.R. 292 S.849. This act will offer the Centers for Disease Control and Prevention a guide in collecting information on how many people in the U.S. have MS and their demographic characteristics. This will provide researchers with basic information about the disease. To show your support urge your members of Congress to sign on to H.R. 292 and S.849. If you would like more information on how to effectively communicate with your legislators on this issue email awarenessmsfocus.org for a fact sheet on writing to your legislators and other useful information In Our Office The Program Services Department spotlights individuals who help bridge the Foundation and our community. In this edition we focus on Support Group Program Clerks Courtney Minott and Kara Marsh. Courtney is responsible for processing support group meeting flyers and maintaining and updating program records. Courtney holds an associates degree from Broward College and is currently pursuing a bachelors degree in business management. Kara is responsible for processing support group meeting paperwork and maintaining and updating program records. Kara holds an associates degree from Florida Atlantic University and is pursuing a bachelors degree from FAU. She is majoring in anthropology and minoring in sociology and French. Courtney Minott Kara Marsh 57MSFocus Spring 2015 The Show Must Go On MSF Ambassador Twyla Cochran was so excited meeting NashvilleTenn.Music City musicianwriterproducer 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 didnt 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 Neals performance the concert also featured local talents Destiny Pittman Tony Smith and Mark Huff. By evenings end not only was the audience memorably entertained but also MSFs Program Services was amplified to the tune of 2500. Many thanks to Copperhill Country Cabins Dr. Stephen Treon photographer Randy Gray stage manager Jimmy Stanley State Senator Mike Bell all of Twylas 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 5050 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 By Hildy Berger 58MSFocus Spring 2015 Wilmette French Market in Wilmette Ill. offers traditional farmers market goods from local and regional vendors and on one special Saturday volunteer fundraiserslocal 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 Colorados annual craft fair a feast fit for any shopping warrior. Shanyns 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. night they gave it their all for the MSF raising 1500 from the raffle auctions tips and customer donations. Our appreciation goes out to the events supporters and participating ladsladies you are all absolutely fabulous Special Events 59MSFocus Spring 2015 Eastern Shore MS Support Group meets at RubyTuesdays Fairhope Ala. location every second Wednesday and consistently participates in the restaurant chains GiveBack program specifically to benefit the MSF. How it works the MSF registers online at Ruby Tuesdays 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 thats 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 1120 If you or someone you know would like to participate in RTs GiveBack program or any similar third-party fundraiser to benefit the MSF contact Hildy at 800-225-6495 or email hildymsfocus.org. 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 httpswww.facebook.comevents146469905523289. The site links MSFs Facebook Page and online donation links and contributions referencing Chillin for MS and Ice Bucket Challenge currently total more than 1700 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 salesthese children have given pancakes the official thumbs up. Its fun and it allows us a great opportunity to help support MSFs programs and services. Hildy Berger is the MSFs 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 hildymsfocus.org. 60MSFocus Spring 2015 Video chatting seems almost Jetsons- like but today it is a reality. All you need is a Wi-Fi connection and a device with a front-facing camera. Of course the person you are calling needs the same equipment. The amazing thing about video calls is that because they are made on a Wi-Fi networkyou can call to and from anywhere in the world as long Wi-Fi is available to both the caller and the recipient. There are two main programsapps that you need to accomplish this task FaceTime Apple only and Skype Android andApple. General Information for Skype and FaceTime FaceTime FaceTime videovoice calls can be made to and from any Apple device that is on Wi-Fi. If the device you are using does not have cell service and no phone number is available such as an iPod or iPad an email address is used.The recipient needs to activate FaceTime on their device before they can make and receive calls. There are several ways to make a FaceTime call. From the FaceTime app type a mobile number or an email address or tap the and FaceTime will access your contacts and add them to your list. Then tap the video camera icon to place a video call. To access from your contact list tap the video camera next to FaceTime. If they do not have an Apple device this option is not available. Once a call is made if the recipient is available and answers you will connect automatically. There is no voicemail on FaceTime so if they are not available or do not answer you need to press the red end call icon to disconnect the call. If someone calls you on FaceTime a message on the screen lets you know it is a FaceTime call. Because it is a video call you may want to consider this before you answer. Skype You can only video and voice call others who also have a Skype account. You need the Apple or Android app a free download. You can create an account from the app or the website Skype.com. Unlike FaceTime Skype can be used on any Apple or Android device or Mac or PC. You need the Skype ID of the person you want to video call. To navigate Skype on a phone you need to swipe to see more options. The screen is too small to show all the options at once. You can access more options by pressing the three dots in the corner. On a tablet all the options are visible at startup. Skype is similar on both platforms. There may be minor differences but it is Videos and Voice Calling By Joanne Fortunato 61MSFocus Spring 2015 basically the same program. Visit apple.com and search for FaceTime to get more information or visit httpssupport.skype.comen to learn more about Skype. Additional Programs An additional free program worth mentioning is Vonage. With Vonage you can call any landline or mobile number in the U.S. or Canada for free. You are allotted 3000 minutes per month. A great feature of Vonage is that your caller ID is your phone number. This means that anytime you are connected through Wi-Fi you can call landline or mobile for free and your number will appear as the caller ID. This is a great program to use if you are traveling internationally and want to call the U.S. Many similar programs give you a separate number and only work if both caller and receiver have an account in the program. In addition if both users have Vonage accounts you can text and video chat free as well. The added feature of texting is great if there is a time difference between callers. Like other similar programs you need Wi-Fi to use Vonage. Wi-Fi is usually available in hotels cafes airports and many other locations. Many times the access is free or there is nominal fee. Staying connected is easy and can be free no matter where you are or where you calling or chatting. Joanne Fortunato BS MA is a retired computer technology teacher in Troy N.Y. She has a masters 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. Visit Our Website At www.HeatReliefDepot.com Receive a 10 Discount Use Coupon Code MSF Or Call Us Toll Free 877-879-1450 Warming Vests Hand Foot Warmers Warming Cushions Herbal Wraps Heat Packs More Cooling Vests Neck Wrist Coolers Fans Sunscreens Hats Caps Visors Misting Products More Your Place For Personal Cooling Warming Products HEAT RELIEF DEPOT Or Call Us Toll Free 877-879-1450 62MSFocus Spring 2015 The Multiple Sclerosis Foundation offers media resources for the MS community. The main means of doing so is the Lending Library program. The program started with six books and two tapes in 1997. Now the library consists of more than 300 books and 100 DVDs. The Lending Library is a service for mostly our homebound folks who cant get out Jay Hass said who has administered the program since 2010. Our Lending Library gives them free access to specialty books on MS chronic illness inspiration and general knowledge on topics ranging from caregiving to diet. All these books are related to a chronic illness but especially to MS. They cant get out to their library or their library doesnt really specialize they might have one book on MS but we have all the books on MS. Requests for materials can be made on the phone or on the Internet.According to Jay the website averages 10 requests a month. When a book gets spotlighted or even turns up in an article writers 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. Its my library she said. It is more relevant to my needs. I like to look at things from multiple perspectives and thats what I get from the Lending Library. It provides an opportunity to review books before buying and adding them to her own collection. On occasion she will receive suggestions for books to read. I will ask Jay if he has it. If he doesnt have it he will order it and Ill check it out. The MSF Lending Library is lined with free books CDs DVDs audio and visual materials that are available by mail across the U.S. A handful of titles are available in large print. The titles are diverse. Some focus on living with MS and include Me and My Shadow Learning to Live With Multiple Sclerosis by Carole Mackie and Living Beyond Multiple Sclerosis A Womans Guide by Judith Lynn Nichols. Others put the spotlight on living with a chronic illness and include The Ultimate Guide to Sex and Disability For All of Us Who Live With Disabilities Chronic MSFocus Spring 201563 Pain and Illness by Miriam Kaufman Cory Silverberg and Fran Odette and Peace in the Storm Meditations on Chronic Pain and Illness by Maureen Pratt. There are also general titles such as Letting Go of Anger The 10 Most Common Anger Styles and What to Do About Them by Ron Potter-Efron and Pat Potter-Efron and The Happiness Project by Gretchen Rubin. I love books said Jay. MS For Dummies ranks among Jays favorites in the collection. All the For Dummies books are very comprehensive. They go into every aspect of the subject. Especially for a newly diagnosed person theres nothing really other than asking their neurologist that they wont learn in that book. My tie with the readers is one of the most rewarding aspects of the job for Jay. I enjoy the human interaction and knowing that Im really helping people. Michelle agreed I truly feel you are helping those of us with MS cope and it helps us find a new way of dealing with it. I cant say enough about Jay. Hes been a really nice person and that really helps. Individuals are limited to one media item at a time for a three week loan period. But the loan period can be extended for an additional three weeks upon request. Each media item mailed includes a due date and a return postage-paid envelope. To take advantage of this program or for more information call our Program Services Department at 888-673-6287 or contact us by e-mail at supportmsfocus.org. 64MSFocus Spring 2015 David Osmond Inspires MS Community Through Song By David Osmond Im David Osmond and my story is a lot like many others living with relapsing multiple sclerosis. It started with a difficult diagnosis leading me through a journey from anger to denial and eventually to the motivation to face this disease head-on. Following the experience of my diagnosis and treatment Ive been fortunate enough to share my story and help empower those who have also been affected by the disease. I have been able to use music to unite the MS community. Ive always expressed myself best through music to me music is what feelings sound like. It is my hope that my story motivates and inspires others to become better self-advocates when dealing with the challenges MS brings. I was diagnosed when I was 26 in the prime of my life. I noticed my first symptoms when I was performing in a show. My vision was affected and then symptoms progressed from my feet through my legs back chest and even to my hands. I was scared because my family and I didnt know what was wrong with me at the time. After many doctor visits and tests I was finally diagnosed. I was relieved but I was also in denial. I wasnt exactly a stranger to MS because my dad Alan Osmond has another form of the disease. I thought I knew every- thing there was to know about MS but in a very short time my condition progressed beyond what I saw my father go through when I was growing up. I needed to do more research to better understand the battle ahead of me. I wasnt ready for a disease-modifying treatment at the time and I certainly wasnt ready for needles. So I decided to try to manage my MS through diet and exercise. At that time I had about one to two relapses per year experienced difficulty walking and even had to use a wheelchair periodically. It took me some time before I was ready to take an active approach to treating MS. I eventually realized that I was just coping and not doing everything I could to actively manage the disease. One part of this evolution stemmed from seeing my brother play on the floor with his kids. I questioned if I would ever be able to do that with my kids because of my relapsing MS. Once I got married and started my family I wanted more than ever to make sure I was taking care of myself the best I could. When I received MSFocus Spring 201565 The National MS Society Spirit of Life Award in September 2010 my wife and I made a decision that I would dedicate myself to managing my MS so that I could continue to be active with my wife and kids now and in the future. Last year I teamed up with Novartis Pharmaceuticals Corporation on an educational campaign Our Voice in Song to inspire people living in the MS community to raise their voices and take charge of how they manage their disease. A lot has changed in the past few years and many more treatment options are available. Treating relapsing MS early is a crucial part of managing it. I researched what treatment options were available and worked closely with my doctor to understand the risks and benefits eventually selecting an oral disease-modifying option that was right for me. Everyones experience with relapsing MS is different so I would encourage anyone living with the disease to talk with their doctor about which treatment option would be best for them. Now that Ive taken charge of managing my relapsing MS head-on I want others to do the same. I wrote a song I Can Do This based on my own experience and advice I received from my family when I was diagnosed. I hope this song helps inspire and motivate people living with relapsing MS get serious about actively managing their health. Its been an amazing experience thus far working on Our Voice in Song and meeting others who are facing similar challenges. This year Im continuing to meet with MS communities all over the U.S. You can find more information at www.ourvoiceinsong.com where you can also download I Can Do This for free watch my new music video access helpful tips and tools and learn more about the campaign. David Osmond is a solo music artist Broadway performer motivational speaker and lead singer of The Osmonds 2nd Generation. He has performed in more than 17 countries and has had three top 40 hits in the U.K. David is a married father of two daughters and the nephew of Donny and Marie Osmond. A long- standing advocate since his diagnosis in 2006 he has received multiple awards for his commitment to the MS community. 66MSFocus Spring 2015 I have a strong interest in multiple sclerosis research both as a healthcare provider and as a person living with MS. I want to do my part to find a cure not only for myself but also for my family members living with MS and the hundreds of others with MS who I have cared for as a nurse. So naturally when I was approached about a new and unique research initiative that is the first of its kind for MS I was immediately interested. Thats how I became involved in an exciting initiative called iConquerMS and Im excited to be able to tell you more about it. iConquerMS is the first patient- powered research network in the MS world. But what does that mean exactly It means the people living with this disease are the ones that control the project. Participants can choose their level of involvement which can range from simply filling out a few surveys to sharing their health data proposing research questions and helping to decide what research initiatives take priority. We are hoping that by crowdsourcing a huge databank that researchers can tap into we can identify trends that we didnt know existed and help cut the amount of time and money it takes to run a clinical study. Who knows this may even help us find a cure faster. Another great benefit of this initiative is that researchers share their results directly with participants and other researchers creating a collaborative atmosphere. The iConquerMS initiative was launched by the Accelerated Cure Project for MS. The ACP staff are some of the most passionate people I have ever met and they are dedicated to accelerating MS research efforts. They have put a tremendous amount of time and effort into this initiative and their efforts are already having a tremendous effect on the MS community. I am extremely proud to serve on the Membership Committee for iConquerMS and part of my job is to help spread the word and get more participants involved. Our goal is to have 20000 people registered and participating in the iConquerMS initiative by September. With more than 1200 people in 48 states already registered we are on our way to meeting our goal but we need you to step up and help out. As a healthcare provider privacy is my number one concern.The iConquerMS team takes privacy very seriously and has security technology in place to safeguard any identifying information. Additionally all personal identifiers will be removed by ACP staff before it is shared with researchers. The iConquerMS initiative has been endorsed by all major multiple sclerosis advocacy groups in the United States including the Multiple Sclerosis Foundation. Committees like the one I serve on are iConquerMS Initiative Aims to Accelerate MS Research By Stephanie Butler Spring 2015MSFocus 67 made up of the best and brightest people in the MS community including doctors researchers bloggers and advocates. Many of us working on iConquerMS are living with MS ourselves and are passionate about helping it to succeed. My data has the power to conquer MS and so does yours. Enrollment is free and easy and it all starts by visiting iConquerMS.org. If you have any questions feel free to ask me by e-mailing JustKeepSmyelinBloggmail.com. FREE EDUCATIONAL PROGRAMS BY PHONE Join us for the MSFocus Radio monthly teleconference series. Tuesday May 19 830 p.m. Eastern 530 Pacific Exercise for MS The best way to get started. Presented by Jeffrey A. Segal CSCSD NSCA-CPTD CPTS Thursday June 30 830 p.m. Eastern 530 Pacific Clinical Trials Everything you need to know. Presented by Ellen Whipple Pharm.D Tuesday July 21 830 p.m. Eastern 530 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 httpsccc.spiderphone.com23441168. 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. MSFocus Spring 201568 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.orgsupport-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 others quality of life. Sometimes doing so is as simple as listening to someones 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 youre 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 MSFs 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 alissamsfocus.org. I look forward to hearing from you MSFocus Spring 201569 Fingolimod Trial for PPMS Does Not Meet Primary Endpoint Novartis Phase III INFORMS study in primary progressive multiple sclerosis did not show a significant difference between fingolimod and placebo on a combination of disability measures in clinical trials. The safety results were consistent with the well-characterized safety profile of fingolimod in relapsing MS. PPMS is different from relapsing MS in terms of its basic disease process near-absence of acute relapses and fewer active MRI lesions. There are no approved treatments that have been shown to change the course of this disease and management focuses mainly on the treatment of symptoms. The INFORMS study was based on the knowledge that fingolimod enters the central nervous system and can interact with damage-causing cells residing in the CNS. As opposed to the consistently strong efficacy seen in relapsing MS the results of the INFORMS study seem to suggest that PPMS and relapsing forms of MS have different underlying mechanisms. Dr. Thrower Unfortunately we still have no FDA-approved option for slowing the progression of primary-progressive MS. This is largely due to the different nature of PPMS vs.relapsing-remitting MS.PPMS tends to be slowly progressive with much less active inflammation. Most of our MS disease-modifying therapies are designed to lessen inflammation. So with PPMS the major target for most DMTs may be harder to hit because the target is smaller than in RRMS.What follows is my personal take on PPMS the negative clinical trial results and dealing with PPMS in real life. 1 Less inflammation does not mean no inflammation. Many people with PPMS still have active or enhancing lesions on MRI. While treatment results may not be as dramatic with DMTs in PPMS as they can be in RRMS some benefit may still be there. Trials of Copaxone and Rituxan in PPMS were technically negative but closer examination shows that some slowing may have still been there with these drugs in PPMS. 2 We are not very good at measuring disability in MS. For years our gold standard for disability measurement in MS has been the EDSS or Expanded Disability Status Scale. This measure is heavily weighted towards walking ability and does a poor job of measuring other issues such as arm function and fatigue. More recent studies including the INFORM trial of fingolimod also use the MSFC or MS Functional Composite. 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. MS NEWS and What It Means to You MSFocus Spring 201570 This looks at memory upper extremity function and walking speed and may be more sensitive to the big picture of how a person with MS is doing. 3 Maybe we need to target something other than inflammation. If PPMS is more of a neurodegenerative condition than an inflammatory one alternative strategies such as antioxidants would be a better fit. Tecfidera is a DMT that is proposed to work through such antioxidant pathways and will likely be tested in PPMS. The biggest target for the future remains neural repair. 4 Finally dont forget the role of wellness and symptom management. Even if we dont have the magic bullet to stop andor reverse progression in PPMS yet we do have a myriad of options to manage symptoms and improve quality of life through rehabilitation and medications. Stem Cell Therapy May Hold Key to MS Treatment A new study shows that after three years an experimental stem cell treatment was effective for creating sustained remission of active relapsing-remitting multiple sclerosis and was linked to improvements in neurologic function. The treatment was shown to have few serious early compli- cations or unexpected adverse events. The study followed 24 patients who received high-dose immunosuppressive therapy. Using a patients own cells the researchers found that the overall rate of survival was 78.4 percent at three years. Progression-free survival was 90.9 percent and clinical relapse-free survival was 86.3 percent. Patients showed improvement in neurologic disability quality of life and functional scores. While researchers encountered hematological and gastro- intestinal side effects they were both expected and reversible. The study was published online by JAMA Neurology. Dr. Thrower MS involves a persons immune system attacking something that it should not be. In MS the immune attack is directed against the myelin in the brain and spinal cord. This abnormal immune response is the result of both environ- mental and genetic factors. What if we could reprogram the immune system in a way that would have it not attack myelin This is the idea behind an autologous hematopoietic stem cell transplant. Autologous means the stem cells come from the patient as opposed to a matched donor. The appeal of using autologous cells is that the body should not reject them. An allogeneic transplant is one using a matched donor. Even with modern matching techniques there is the risk of the body rejecting the transplant host versus graft disease or the transplant actually fighting the recipients body graft versus host disease when using allogeneic cells. This means recipients of allogeneic cells need to be on medications to help prevent these complications. Before a person can get their autologous or allogeneic stem cellsthe existing immune system must be wiped out. Autologous stem cells are obtained from the patient and frozen for later use. Then high-dose immunosuppressive therapy is given using a combination of chemotherapeutic drugs to kill the existing immune system. The patient is then given their own stem cells back to generate a fresh immune system one that does not know how to attack myelin. As shown in the reported study the results can be encouraging. Still this is a very aggressive procedure and there can be significant risks.The results appear to be most encouraging in people with aggressive RRMS much less so for progressive forms of MS. 71MSFocus Spring 2015 Studies Weaken MS Vaccination Link A pair of studies calls into question links between vaccines and multiple sclerosis. In particularneither study found long-term associations with the human papillomavirus vaccine and MS. In the first study a research team led by Dr. Annette Langer-Gould of Kaiser Permanente Southern California in Pasadena Calif. looked at the complete health records of Kaiser Permanente Southern California members to determine whether vaccines particularly those for hepatitis B and human papillomavirus HPV increase the risk of MS. They identified 92 cases and 459 controls of females ages 9 to 26 years. They found no associations between HepB vaccination or any vaccination and the risk of acquired central nervous system demyelinating syndromes CNS ADS up to three years later.Vaccination of any type was associated with an increased risk of CNS ADS onset within the first 30 days after vaccination only in younger individuals. They found that short-term increase in risk suggests that vaccines may accelerate the transition from subclinical to overt autoimmunity in patients with existing disease. Their findings published in the December issue of JAMA Neurologyhoweverdo not suggest a need for a change in vaccine policy. The second study led by Nikolai Madrid Scheller of Statens Serum Institut in Copenhagen Denmark wanted to know if the quadrivalent human papillomavirus qHPV vaccination is associated with an increased risk of multiple sclerosis. Identifying a cohort of all females ages 10 to 44 years in Denmark and Sweden followed up from 2006 to 2013 researchers found no link between the qHPV vaccination and the development of multiple sclerosis. Their findings published in the January issue of JAMA did not support concerns about a causal relationship between qHPV vaccination and demyelinating diseases. Dr. Thrower The topic of vaccine safety in MS has been around for years. Two recent studies shed some light on the relationship between certain vaccines and the risk of a demyelinating condition like MS. The first study looked at people who had developed a demyelinating condition and another group who did not. The researchers then looked at whether the subject had recently gotten any vaccination especially those for hepatitis B or HPV. No correlation was seen between vaccination and the risk of a demyelinating condition. The second study looked at all women receiving the human papillomavirus vaccine in Sweden or Denmark between 2006 and 2013. The HPV vaccine is given to women to diminish the risk of acquiring human papillomavirus.The vaccine is also offered to men to lessen the likelihood that they may transmit HPV to women. 99.7 percent of cases of cervical cancer are due to chronic infection with HPV. While cervical cancer was once a major cause of death in women rates decreased drastically when routine Pap smears began. Still in 2014 12360 women in the U.S. were diagnosed with cervical cancer and 4020 died from it. HPV vaccinations will hopefully reduce these rates even further. In 2009 there were five reports of women developing a demyelinating condition within weeks of getting the HPV vaccine.This most recent large study failed to show any correlation between the risk of developing MS and having gotten the HPV vaccine.This study does not address the safety of the HPV vaccine in a person already diagnosed with MS. Given that the HPV vaccine is not a live virus one would not expect any risk of an MS relapse after receiving this vaccine. NONPROFIT ORG. U.S. POSTAGE PAID FT. LAUDERDALE FL PERMIT NO. 2698 Are you moving Please notify us of your change of address. Call 888-MSFOCUS 673-6287 or Email supportmsfocus.org Change Service Requested 6520 North Andrews Avenue Fort Lauderdale Florida 33309-2132 RAND-SCOT Incorporated Make an Easy transfer with the EasyPivot The EasyPivot Patient Lift is the patient lift of choice - EasyPivot EasyPivot 401 Linden Center Drive Fort Collins CO 80524 800-467-7967 970-484-7967 inforandscot.com 2012 Rand-Scot Inc. 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