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Sexual Intimacy Publications Manager ““TTAALLKK BBAACCKK”” We Welcome Topic Suggestions Terry Schenker for Future Issues. Editorial Coordinator Your comments about each issue Christopher Paine are important to us. Editorial Committee Email comments to: Kasey Minnis [email protected] Natalie Blake or write to: Editor, MSFocus 6520 N. Andrews Avenue, Alissa Ayden Fort Lauderdale, FL 33309 Hildy Berger Marianly H. Primmer Jay Hass Contributing Writers Stephanie Butler Dorothea Cassidy Pfohl, RN, BS, MSCN Dan Digmann Jennifer Digmann, MA Gay Falkowski Colleen Fegan Joanne Fortunato Take MSFocus on the road with Dr. Miriam Franco, MSFocusRadio.org MSW, Psy.D., MSCS Ellen Whipple,Pharm.D. Listen on your PC or mobile device Laura McCatty, RN, BSN, MSCN Available 24/7 Mark McCatty David Osmond Randall T. Schapiro, M.D., FAAN Shelley Peterman Schwarz Ben Thrower, M.D. FEATURES The Challenges of Sexuality 6 Creating and Building Relationships with MS: A Dialogue between a Specialist Nurse and Psychologist 13 Keeping the Love Alive 16 6 Non-Sexual Intimacy Boosters 19 MSF Cruise for a Cause Sailing to New Horizons 26 Intimacy and MS: Make It Your Own 37 National Multiple Sclerosis Education and Awarenss Month ® Activities 39 Tips to Parents 46 Spotlight is on...the MSF Lending Library Program 62 iConquerMS Initiative Aims to Accelerate MS Research 66 CONTINUING TOPICS As We See It 4 Uncle Sam’s Helping Hand 54 MSF Mailbox 5 PS: What’s New? 56 From the Library 21 Regional Events 57 Facebook Feedback 33 MS Tech 101 60 Voices: Life-Changing Ocean Men & MS 64 Voyage Fills in a Blank 44 Support Group Spotlight 68 Updates by the Pharmacist 51 MS News 69 Statement of Purpose The purpose of the Multiple Sclerosis Foundation’s publications is to empower those affected by MS with the information necessary to make the most complete and educated decisions concerning their healthcare. We do not advocate or endorse any specific treatments, healing modalities, or practitioners. The material presented in this publication is for informational purposes only. For specific advice, consult a healthcare professional. MSF does believe that each person has the right to choose the treatments they feel are best, and therefore acts as a source of information, providing referrals to local resources and partnership in problem solving. MSFocus is published quarterly in enlarged type for the benefit of our readers. Audio versions of featured articles are available for listening or download on www.msfocus.org (click On Demand Audio). Back issues are available online at www.msfocus.org. MSFocus is a free publication for individuals with MS, their families, and others interested in MS. LLeett’’ss MMaakkee TThhiiss OOnnee CCoouunntt -- FFiinnaallllyy.. Not long ago, a bill in Congress mobility of our society? What are all the authorizing a means of counting the characteristics of patients, their family number persons diagnosed with either MS histories, and how many reside within a or Parkinson’s (H.R. 1362, The National given locale? This is just to name a few Neurological Diseases Surveillance System possible insights we could gain. Act), though having passed a vote in the When it comes to how we view MS and U.S. House of Representatives, didn’t make other neurological diseases, of course, it’s it past the Senate. This failure was about individuals and how they are troubling to most of us around the country, affected. However, there is also the cost to as it was just another piece of badly needed society in terms of the loss of productivity legislation that got caught up in the malaise of dysfunction affecting Congress. of a portion of the population and all With regard to MS, the number of persons its corresponding economic and social in the U.S. so affected ranges from ramifications. At the core of it all, lies the 350,000 to 500,000 depending upon which depth and breadth of our understanding of scientist, neurologist, advocacy organization, disease on both the cellular and “people” or pharmaceutical industry representative levels. Our willingness to provide solutions you are speaking to at the moment. is a measure of the direction of our moral Many speculate those numbers could be compass as a nation. This is what drives significantly higher. It’s a guess at best, our ability to develop treatments and cures. and it has its basis in studies done in the We, at the MSF, join with our fellow seventies. To say we are long overdue advocacy organizations in appealing to for obtaining a realistic count is an Congress to pass this bipartisan initiative. understatement. Add your voice as well by contacting your Fast forward to the present where up elected representatives on Capitol Hill. before Congress is the Advancing Research The links at the bottom of the MS for Neurological Diseases Act of 2015 Community Advocacy page on our website (H.R. 292 in the House and S.849 in the (www.msfocus.or g/Advocacy.aspx ) make Senate) . This bill proposes a comprehensive it easy. Let’s strive to help get it analysis of the incidence and prevalence through Congress as a “clean” bill, free of various neurological diseases including of controversial amendments, and onto MS. The benefits of these studies are too the president’s desk for his signature. numerous to list. However, it begins with opportunities to gain the best possible understanding of a disease. For example, where is a given disease more common, and has the geographic picture changed Jules Kuperberg Alan R. Segaloff through the years with the increased Co-Executive Director Co-Executive Director MSFocus 4 Spring 2015 Thank you so much for the articles in I enjoy reading MSFocus magazine. the MSFocus magazine about Sew Pretty, Always an excellent source for timely and in the Support Group newsletter about topics and honest news! the Cape Coral Support Group. All the best for you in 2015, What a wonderful surprise to see them Sharon K. Fetters, Sweetwater, TN both. Thank you and please pass on my gratitude to all persons at the Foundation I want to extend my great appreciation who work on these publications. You have for your generous support through your been such a wonderful support to Sew assistive technology program for mushroom Pretty and me. buttons on the elevator I just had installed We are working very hard to get in my house. As my MS progressed, I was grant money for a working space or having difficulty transferring from my building that is handicap-accessible for wheelchair to my stair lift, then to a Sew Pretty, as well as a Community walker upstairs. The elevator carries me Resources Coordinator to serve as the in my motorized chair up into the organization’s resources developer and bedroom. Giant buttons are easier for special projects manager to help us as me to press since I have to keep pressing we grow. We have hired a grant writer to for the duration of the ride. I think of the help with this. Hopefully we will be able Foundation every time I press those to get funding for these two areas this buttons. Thank you so much. year. Our mission is still to donate our profits back to MS services and Tamar Sherman, Northport, NY research. I went to my neurologist’s office Thank you again for all of your support. yesterday and saw a pile of MSFocus so Martha Hannigan, executive director, I took one and just read it. Sew Pretty Corp. www.sewpretty-ms.com Well done and thank you! I appreciate Many thanks again for making it your articles. As someone living with MS possible for me to be made aware of, for about fifteen years, I have experienced A Mindfulness-based Stress Reduction many symptoms you discuss, and read Workbook. I will buy it as a tool to reach more to understand that others know what my goals for better tomorrows with MS. I know and what I might expect in the future. I am grateful for this wonderful So again thank you and, if possible, (Lending Library) program and your please add me to your mailing list. always uplifting spirit. Bob Jacoby, Wilmington, NC Beverly Thomas, Baltimore, Md. If you have any comments or questions for the MSF, they can be emailed to: [email protected] or written to: Editor, MSFocus 6520 N. Andrews Ave., Ft. Lauderdale, FL 33309 MSFocus 5 Spring 2015 By Randall T. Schapiro, M.D., FAAN Managing multiple sclerosis is about disease management, symptom management and, very importantly, about person management. Many times these overlap significantly. Such is the case when thinking about sexuality and MS. In our society, communicating about sexual dysfunction is often very difficult. It is a topic often not well discussed in the physician’s office or even at home, but is of extreme importance to the lives of those with MS. Communication is the key to tackling the important topic of sexuality. This article might be considered “X-rated” and is written without inhibition. It may not be appropriate for a young audience. Multiple sclerosis usually begins in a • Touching young person with the average age of • Looking onset at 30. In a young person, thoughts • Honesty tend to lean toward athletics, body image, • Body language career, friends and sex. With aging, • To want thoughts may evolve toward retirement • To understand and health, but sex remains prominent. • Commitment Multiple sclerosis has an effect on all • To accept aspects of life, and clearly, it affects sexual function and one’s image of These important topics need to be sexuality. Sexuality is an all-encompassing discussed completely between partners. descriptive word that involves aspects of These topics and others may indicate intimacy and sexual function.
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