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5 MSFocus Spring 2016 If you were to survey the general public about their perception of the essential functions of charitable organizations you might get varied answers. However the two most common responses will be raising funds and providing assistance in one form or another to constituents. Of course to a large extent that is correct but not the complete answer. There is an equally important function that is often overlooked or taken for granted public awareness. Awareness is central to the success and growth of organizations such as the MSF. Its impact serves to help drive the success of our fundraising initiatives broaden the publics knowledge of the issues and challenges of individuals and families impacted by MS as well as expand the depth and breadth of our outreach to this community. As most of you know we designate March as National MS Education and Awareness Month . While promoting awareness is a yearlong endeavor the MSF dedicates that month to presenting a focused maximized effort designed to enhance awareness among the general public as well as our elected representatives in various levels of government. This year was no different. In addition to the abundance of educational programming thousands of awareness kits were requested and distributed across the country for use in our grassroots campaign. For the participating individuals groups and businesses it was fun and emotionally satisfying. For the MSF their efforts helped create new relationships while strengthening existing ones. Rest assured this was one form of boots on the ground everyone could easily agree upon. Special thanks to all the participants you made it happen Coming up later this year the Multiple Sclerosis Foundation will celebrate 30 years of serving the MS community. Ahead of our anniversary the MSF will be participating in the Dress4MS campaign featuring celebrity and television personality Sharon Osbourne. You will have the opportunity to participate in this exciting awareness program from just about any- where. Find the advertisement on page 50 of this edition of the magazine. Please join in and spread the word. Together let us all continue to do what we can to increase awareness of multiple sclerosis and the wide array of available free resources of the MSF. Knowledge empowers Jules Kuperberg Alan R. Segaloff Co-Executive Director Co-Executive Director TO BE AWARE OF AWARENESSTO BE AWARE OF AWARENESS Publications Manager Terry Schenker Editorial Coordinator Christopher C. Paine Editorial Committee Kasey Minnis Marianly H. Primmer Anthony DiGerolamo Natalie Blake Alissa Ayden Jay Hass Contributing Writers Aaron Boster M.D. Jack Burks M.D. Matthew Carraro M.D. Rita Carroll Ph.D. CPCRT Joanne Fortunato BSMA Miriam Franco MSW Psy.D. MSCS Jeffrey N. Gingold Dr. J. Tamar Kalina Ben Thrower M.D. Ellen Whipple BSPharm.D. Diana Valeriano TALK BACKTALK BACK We Welcome Topic Suggestions for Future Issues. Your comments about each issue are important to us. Email comments to or write to Editor MSFocus 6520 N. Andrews Avenue Fort Lauderdale FL 33309 Looking for articles from back issues Find our archive and web-exclusive content at A World of MS Information in Your Pocket 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 click On Demand Audio. Back issues are available online at 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 Finally Treatment for Cognitive Difficulties with MS 10 Computer Program Can Help You Connect 14 Cognitive Challenges of Multiple Sclerosis 19 Exercise Your Brain 22 Screening Key to Catching Cognitive Dysfunction 29 Going Beyond MS National Multiple Sclerosis Education and Awareness Month Coverage 32 Dress4MS with Sharon Osbourne 50 CONTINUING TOPICS As We See It 5 MSF Mailbox 8 Facebook Feedback 9 From the Library 39 Voices My Life with Multiple Sclerosis 40 PS Whats New 42 Support Group Spotlight 43 Regional Events 47 Uncle Sams Helping Hand 52 MS Tech 101 54 Men MS 58 Updates by the Pharmacist 60 MS News 62 Questions Answers 66 My name is Dawn Craig and I am a medical assistant instructor at Porter and Chesters CantonMass.campus.Our CEO Jim Bologa unrolled a campus Facebook competition late last year. It was to consist of three parts and was based on campuses generation of Facebook likes and comments on our page. As we were preparing for the third round I approached our Campus Director Henry Przybylowicz and asked if we could donate to the Multiple Sclerosis Foundation when we won. The Facebook team eagerly agreed and the contest was on. We won the third leg and because we swept the contest the donation was increased to 500. I was diagnosed with MS in March of 2015 and in researching different organizations I came upon yours. I just love what you do. Ive read stories from people that you have helped with your generous donations and I realize that you cant help if we dont help you. Our companys CEO Jim Bologa came to our campus yesterday to present the check and the campus cup in front of all of our students staff and faculty. Our campus director Henry asked if I would accept the check on behalf of your organ- ization and I eagerly agreed. I was able to tell everyone a little bit about MS and about what your organization does for folks with this disease. I had a student come up to me after the presentation and ask me if I could give her your contact information. Her mom has MS and suffers terribly with heat intolerance and she would love to see if her mom would qualify for a cooling vest. I will be giving her your contact information tonight when I go to work and Im sure that Ariel and her mom will be reaching out. If this can be the catalyst to allow even one person to get help with their daily living it was well worth the time and effort to secure this donation. I hope this finds you well and again thank you for all that you do Dawn Craig Canton Mass. My name is Maggie Gaines.I am writing to firstly express my gratitude for your foundation and grants that you provide. Without it many of us disabled with MS would suffer a slowsilentand lonely death. Recently I was privileged to get a grant from your foundation that would help me afford to get a good pair of glasses. It was difficult to get that kind gift expedited only because I ran up against some pretty irate uncooperative vision providers. I went to Pearl Vision. They were more than kind They helped me pick out the glasses that would match my face and gave me an awesome pair of prescription glasses. I can finally see and get back to reading Maggie Gaines Cape May N.J. If you have any comments or questions for the MSF they can be emailed to or written to Editor MSFocus 6520 N. Andrews Ave. Ft. Lauderdale FL 33309 MSFocus Spring 2016 8 9 MSFocus Spring 2016 Dave Gay I constantly am playing mind- building games which have been directly shown in studies to help memory and concentration. I also get a lot of rest in order to prevent fatigue and feeling like I am in a fog. Don Anderson We need to use our learning style to help our memory. Im a visual learner and thus art and photos would make good memory tools for me. Sonny Blanchard Music music music I am constantly listening to playing or reading sheet music. I listen to every single instrument being played in a piece. I dissect each song in my head. It helps with my recall lateral thinking and concentration. Marc Sue Anderson I keep a pen and notebook. I have a good sense of humor and so does my best friend and wife. Lisa Jackson iPhone calendar and reminders. Beth Bryant I use my smartphone alarms for medications appointments. I set certain days for appointments. Shanyn Sisnroy Krieger I make lots of notes. I carry a pen and paper pad with me all the time. I live by my planner too Ashli Hopson Taking notes about anything that I wanted to know on TV or on a recording anything audio always helps me when trying to recall something. Often times I take notes on my phone out of convenience Kathy Marbut Ive always been a scheduler. I love organization Jessica Lowhorn Petroff Acceptance is key you need to acknowledge that it is an issue which is easier said than done. For super important events and items I make sure my husband and children know about it as well.Having more people remember helps relieve the pressure and stress to do so. Having a calendar is key as well. I use Google calendar that is connected to my smartphone. I also still use a dry erase board calendar and paper. Even with all of this I will still forget from time to time. Its okay even those that have no memory or cognitive issues forget as well. Facebook Feedback is your chance to share your experiences related to topics covered in the MSFocus. Like our Facebook page and watch for our next Facebook Feedback post. Our question for this edition was How do you cope with problems with memory attention or thinking Any tips or tricks Here are some of your responses 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. Responses have been edited for length and clarity. 10MSFocus Spring 2016 Cognitive difficulties are common symptoms of multiple sclerosis. Its estimated that 60 percent of folks with MS experience problems with short-term memory and have trouble sustaining concentration and attention. Some experience cognitive decline later as their disease progresses others experience changes early on because of the location of a lesion and some never do. Its only been in the last two to three years that neuropsychologists have been able to identify the specific distinct ways in which cognitive decline occurs within MS. As a result some cognitive rehab clinics now exist that provide a more radical and broader approach to treating cognitive issues. Large research pilot studies are now underway to document these effects. As a psychologist I had few if any treatments or resources available to my MS patients for cognitive difficulties until recently. That changed when I met Dr. Rita Carroll of Main Line Rehab in the Philadelphia suburbs where I practice. I was excited to learn that she had developed a program working one-on-one with persons with MS in their homes to either prevent or delay cognitive decline. Her program is providing exciting new opportunities to treat cognitive problems and is changing how we think about and cope with MS. I invited her to share her impressions and experience with the MSFocus community in the following discussion. Miriam You know Rita its estimated that 60 percent of folks with MS will experience cognitive difficulties and yet I find MS practitioners rarely discuss it with people with MS. There was an unintentional attitude of If there is no treatment to offer why talk about it And it is terribly misunderstood.Because people with MS can be very expressive and not struggle with communication they dont appear the same way as do others with diseases that affect thinking. Rita Youre right. Some studies are showing it might be as many as 75 percent who experience cognitive issues with MS but most people do not know about that aspect of MS. Cognitive problems can have a profound impact on the person with MS and their family as well. The person with MS may not understand why they are forgetting things or having difficulty following conversations and planning their day. Coupled with that family members are confused by changes in behavior and dont realize that cognitive changes impact behavior and function. These changes can be frightening overwhelming and often overlooked by medical professionals. By Miriam Franco MSW Psy.D. MSCS and Rita Carroll Ph.D. CPCRT 11 MSFocus Spring 2016 Miriam As a rehabilitation specialist what are the typical ways you see MS affecting thinking and memory Rita Mostly we see an effect on concentration focus memory and executive functions. Concentration and focus are essential to pretty much any- thing a person does so strong attention skills are very important. If there are problems in this area then every other cognitive skill can be impacted. Memory impairment can be more than just forgetting a shopping list or instructions from a supervisor at work. It can be difficulty holding information in your head long enough to do something with it such as remembering the cost of your latte at Starbucks long enough to pull out the cash to pay for it. Then there are executive functions. Problems with executive functions can influence planningorganizingadaptability and problem-solving. These skills are essential for successfully functioning in everyday life. Miriam So how exactly would one know if they are experiencing cognitive decline And does it typically occur as the disease progresses Rita Sometimes the person with MS is aware of the change in thinking. It may take longer to get things done or they may get feedback at home or at work that they didnt do what was asked or they simply forgot something. Perhaps there are difficulties with routine banking or trouble figuring out how to solve a household problem. Sometimes people with MS have issues with keeping appointments and multitasking. These are some of the common complaints that signal cognitive problems. And these kinds of things can show up suddenly and wreak havoc on how a family functions. There can be huge variations in the way cognitive dysfunctions show up and the progression of the disease. The potential for a corresponding cognitive decline is different for each person. As the disease can affect various parts of the brain each person is likely to have a different set of cognitive problems depending on where lesions in the brain are located. Miriam Should everyone get neuro- psychological testing Are there other ways to assess this Rita Neuropsych testing is incredibly helpful when its available. It helps to document very specific cognitive abilities. When a neuropsych test is done well it identifies areas of cognitive strength and weakness and can be very helpful if a person embarks on a course of cognitive rehabilitation or just wants to know what their cognitive deficits are. Functional assessments can be an even more powerful tool.Cognitive rehabilitation specialists can evaluate function in the home and community to tease out the cognitive issues that directly affect function. Interviews using formal and informal measures can round out the assessment. Miriam So is there real help Rita Absolutely. Cognition and function can be retrained through home- and community-based cognitive rehabilitation therapy. CRT has been an integral part of rehabilitation for people with head injuries for decades. There is a growing body of evidence that CRT can be an effective tool for improving cognitive skills and that these skills can be generalized to apply to a variety of settings. 12MSFocus Spring 2016 Up until recently most of the CRT for people with MS has been conducted in the rehab hospital or clinic setting. This is great but CRT can be so much more effective and relevant when provided in the persons own home and community. As skills are developed and practiced in a variety of ways and strategies are fine- tuned the person has the opportunity to immediately put them into practice in the real world and receive instant feedback or cueing from the therapist to improve performance. Also as the person makes progress there is typically a level of hopefulness restored. This helps to boost confidence and promotes community access and engagement. Miriam What exactly is cog rehab treatment What can it do Whats involved When should one start it Rita Cognitive rehabilitation is direct retraining of skills lost or altered due to a disease or injury. The goal is to improve cognition compensate for deficits and restore function. This is accomplished through education skills training strategy development functional application and building awareness. CRT promotes neuroplasticity which is the brains ability to reorganize its structure function and connections in response to internal and external stimuli. It also helps to improve cognitive reserve which is believed to be protective against cognitive decline. Also CRT can complement the effec- tiveness of medications and it can build awareness confidence and hopefulness. A lot of the CRT being provided right now is computer-based but this really should only have a small role in the CRT session that ideally includes real life strategy and skill development and application in many settings.CRT should be uniquely tailored to the persons abilities goals environment and support system. This isnt about running someone through a program. Rather it is about seeing each person as an individual with unique needs and creating a personalized course of treatment. As for when to start people often start after the cognitive problems have significantly affected their relationships household management or work. Some people with MS are beginning to start CRT before they experience cognitive decline as a way to strengthen cognitive skills before issues show up. Miriam Whats unique about your treatment program Main Line Rehab in the Philadelphia and Pittsburgh areas Rita I think its the fact that we use evidence-based practices for CRT and services are provided in the home and community. We believe that cognitive rehabilitation is more effective and efficient when delivered in the environment in which the skills and compensatory strategies will be used in other words the persons own home workplace andor community. This produces strong relevant outcomes for each person more quickly. A side benefit is that if the person desires family members and other support people can be educated about the cognitive dilemmas that can arise with MS and also learn how to best support the cognitive rehabilitation process as part of a collaborative team. Miriam What can we expect to happen in the MS community with cognitive treatment for others Rita I am hopeful that we will begin to see dedicated funding for cognitive rehabilitation.There is some limited funding available for CRT services through some state Medicaid waivers and of course people can pay privately for these services right now. Currently we are receiving some funding for short-term services through the Greater Delaware Valley Chapter of the National MS Society. We also received a grant to develop home-based CRT services that are specifically designed to meet the needs of the people with MS. Therapy sessions include skills training strategy develop- ment and functional application. As always our model includes building awareness as a means for people to better self-evaluate and determine when skills and strategies are best applied. One of the biggest issues right now is that CRT for any diagnosis is typically not paid for by medical insurance. Though there is a strong and growing body of evidence that CRT works there has been little support for coverage on the insurance front. This situation is further complicated by the wide range of therapists who provide the services. The Society for Cognitive Rehabilitation acknowledges that providers of CRT may have education psychology speech or OT credentials and the Society offers a certification in cognitive rehabilitation. Going forward the priority will be to have these services available to all people with MS. Coverage through traditional medical insurance is a goal and of course therapists will need to receive specialized training to address the unique cognitive dysfunctions of people with MS. Miriam How would one go about learning if there are these resources in their own communities Rita I do think that the word is slowly getting out about the need for CRT services and that the payoff can be huge. We have received wonderful feedback from the people participating in our grant with many stating that they never thought they would be able to return to some of the activities they previously participated in The good news is that some medical specialists are becoming aware of CRT and may have some resources. And of course MS organizations like the Multiple Sclerosis Foundation MSAA and NMSS may have access to resources. 13 MSFocus Spring 2016 Miriam Franco MSW Psy.D. MSCS is a Professor of Sociology at Immaculata University and a clinical psychologist. She is an MS Certified 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 MSAA and is a Health Partner with the NMSS. Rita Cola Carroll Ph.D. has worked in the field of cognitive rehabilitation for more than 34 years initially in an acute rehab setting and for the last 30 years as president of Main Line Rehabilitation Associates a home- and community-based program serving Pennsylvania. Her primary mission has been to develop relevant and effective cognitive rehabilitation services for individuals with neurological diagnoses including MS. 14MSFocus Spring 2016 In an increasingly interconnected world MS can make you feel isolated. Particularly for those whose condition limits their in- person interactions access to the world of information and support that is available online can be vital. But MS can also negatively impact your finances making computer equipment difficult to afford. Happily the MSFs Computer Program bridges that digital divide. The program links those with MS to family friends and healthcare providers by providing the equipment they need to get online. Jen Duke of Canyon Country Calif. experienced the benefits of the Computer Program when she received an HP laptop. The new laptop has given me the oppor- tunity to work and communicate from my bedroom which has been a huge help she said. Thank you for what you have done for me and others in my position. The Computer Program officially began in 2004. Before that it was a part of the MSFs Assistive Technology Program Derrick Lee associate director of Quality of Life Programs for the MSF said. The number of requests was so large we realized that this needed to be its own program. In the beginning the program provided refurbished desktop computers to people with MS.As technology changed and costs dropped the MSF began to offer new desktop PCs and laptops through the program. The Computer Program does not provide Apple products nor does it provide tablets at the current time. The program is available to individuals with MS on limited or fixed incomes. The application process requires verification of a diagnosis of MS and a brief essay from the applicant explaining how a computer will enhance their quality of life.A computer monitor keyboard and mouse or a laptop computer will be granted to qualified applicants. Internet access and technical support will be the responsibility of the grant recipient. The program is growing and the number of requests inch up each year.In 2015 alone nearly 800 applications were received. While not all requests qualify MSFs support service coordinators work diligently throughout the year to connect those with the greatest need to this important service. For Alison Whiteman of Bainbridge Island Wash. getting connected to the digital world was like a holiday. I am sending a Christmas card because this day is Christmas to me she said. Thank you very much for the computer This will be put to good use. To apply for the Computer Program call 888-MSFocus 888-673-6287 to request an application or apply online at msfocus.orgComputer-Grant-Program.aspx. 19 MSFocus Spring 2016 In this article I briefly explore insights that I have gained about the cognitive challenges associated with MS from treating people with MS for more than 40 years. My observations are more practical than scientific. I will start with my historical perspective then relay a patients story with important practical strategies to maximize cognitive abilities. You may find that you are facing similar issues and gain insights to help you adapt to your cognitive challenges. Historical PerspectiveHistorical Perspective Unfortunately cognition problems were not often linked to MS until recently and people suffered without understanding or support. In fact 40 years ago most neurologists believed that MS affected only the myelin insulation around axons electrical transmission wires and not the neurons gray matter or thinking cells. Therefore we told patients their thinking and memory would not likely be affected by their MS. As for me within a few months of evaluating MS patients in the 1970s I realized cognitive issues could be a serious consequence of MS. Unfortunately government or other funding agencies were not ready to fund cognitive research. Some said Dr. Burks if you are correct your research would be devastating to patients mental state because we have no treatment. Its better for patients not to know. Finally the Vocational Rehabilitation Department agreed to provide funding because Voc Rehab was having trouble retraining people with MS. The study defined cognitive dysfunction as part of MS for many people - about 50 percent of MS patients had cognitive problems This and other research led to the advancement of cognitive therapy to help these people. In addition MS cognitive problems were found to be much different than dementia in individuals with Alzheimers disease. The good news is that in the last several years our understanding of cognitive issues and our ability to help patients has increased dramatically. Now we know that MS disease-modifying therapies have a positive effect on cognition as well as reducing MS relapses.Currentlyevaluating cognitive problems is part of most clinical trials in new MS therapies. Cognitive rehabilitation therapy is available through many MS centers. The future is very promising for overcoming many cognitive challenges. The Story of Mrs. SThe Story of Mrs. S Mrs. S is a 50-year-old buyer of copy machine parts. She had relapsing MS with frequent relapses starting at age 20. After many years she now has secondary progressive MS with only occasional relapses since being treated with MS medications. Within a few years after her MS diagnosis she noticed problems with concentration and memory. She was reassured that this was not her MS but likely from her fatigue stress and By Jack Burks M.D. 20MSFocus Spring 2016 depression.Treatments with antidepressant medications were of little help and she feared losing her job. Fortunately she saw an MS specialist team including a speech pathologist an occupational therapist a psychologist and a cognitive rehabilitation expert who worked together with her employer to restructure her business environment. She was moved from a large room full of cubicles to a corner office with a door so she could work uninterrupted. She stopped smoking modified her high fatprocessed food diet began dance and yoga classes started exercising with hydro-therapy swimming developed an organized daily regimen to stay focused on one project at a time and started playing brain games on her computer. Also she learned that MS does not preclude having other medical problems. She was diagnosed with low thyroid and prescribed thyroid medication which made her feel much better. Mrs. S is still challenged by cognitive problems and is not as efficient as she once was but her job is secure and her friends and family noticed improvement in her abilities. She makes a computer to-do list daily and makes certain to get eight hours of sleep. Yes she still has awkward moments and is more easily distracted but she knows how to adapt to these challenges. She reads the news- paper daily does crossword puzzles and participates in an MS support group. Last but not least she got married and her quality of life is much better. How does this story illustrate cognitive challenges and potential solutions Hopefully her strategies may help you. 1. After her diagnosis of depression only she persisted and found knowledgeable and supportive healthcare professionals who recognized her cognitive problems and helped her meet many of her cognitive challenges. 2. She developed healthy lifestyle changes including stopping smoking exercising regularly attending counseling and improving her nutritional balance. 3. With cognitive rehabilitation she confronted her work issues and made changes in her work environment and her organization skills to keep her job which put less stress on her personal life. 4. She joined a MS support group to receive more encouragement and reassurance. She learned that helping others helped her as well. 5. She has improved her adherence to her MS medications to reduce her MS relapses and cognitive damage. 6. Her improved cognitive abilities have also improved her adaptive skills her organizational skills and her commun- ication skills. 7. She feels her work her relationships and her quality of life are very satisfying. 8. She was treated for a non-MS related issue low thyroid and feels even better. Another lesson she learned You can have fleas and ticks at the same time. Therefore stay alert to non-MS related health problems. My Take Home MessageMy Take Home Message My goal has been to provide you with insight and specific ideas to help you deal with cognitive issues in your life. It is important to recognize cognition issues and to seek help from professionals. Positive strategies can help both vocationally and socially. Changing habits and attitudes contribute to a higher productivity and quality of life. 21 MSFocus Spring 2016 Stop smoking start exercising mind and body practice good nutrition and sleep habits prioritize and organize each day with a to-do list tackle one problem at a time which can lessen distractions stay on your MS medication recognize that everyone has good and bad days try to not get discouraged keep connected to your family cultivate a good social network of friends and supporters and last but not least develop a closeopentrusting relationship with your healthcare professionals. Keep remembering that happiness is a state of mind and not a state of health. As we all know some physically healthy people seem miserable and we see many people with MS who feel good most of the time and are happy. They focus on the positives and the blessings that they receive on a regular basis. Included in these blessings are the many MS professionals and patient advocates who work tirelessly to better our understanding of MS and discover new MS therapies. Dr. Jack Burks is professor and director of the MS Program at Nova Southeastern University Davie Fla. Dr. Burks would like to thank and acknowledge the assistance from Judy Daniels who has MS and expresses his appreciation for her patients touch to balance the doctors perspective when giving advice to people with MS. NO WAY POLAR Products 1.800.763.8423 We Are A Proud Supplier For The MSF Cooling Program The 1 Choice for MS Cooling Since 1984. We Are A Proud Supplier For The MSF Cooling Program NO WAYNO WAY Stay inside all summer Dont let your MS heat-sensitivity keep you from enjoying life 22MSFocus Spring 2016 If you are experiencing cognitive challenges due to MS there is good news research shows that proper exercise both cognitive and physical aerobic exercise can help improve some of the changes that you may be experiencing. What is Cognitive Exercise You can think about a cognitive workout similar to a physical workout at the gym. When working out it is essential to challenge yourself in order to see benefits. For example if you go to the gym and consistently lift a one pound weight you may not see your strength improve. However if you lift weights that are challenging to you and slowly you increase the challenge you should notice improved strength. Furthermore it is important to work- out consistently to maintain or increase the improvements you make. If you go to the gym consistently for months or even years and then completely stop attending the physical improvements you gained will slowly decline over time. Similar to the gym analogy therefore it is recommended that you consistently work out your cognitive skills with proper challenging exercises. There are many different ways you can engage in cognitive exercises. There are many types of brain game exercises that are available online in bookstores or applications on your phone to help work on cognitive exercises. Ask your doctor for a referral to an occupational therapist or neuropsychologist for an assessment of your specific cognitive impairments and recommendations for appropriate cognitive rehabilitation exercises that can improve those changes you may be experiencing. There are also sometimes medications available to help with these changes. In the meantime employing cognitive strategies and techniques can prevent or minimize how the cognitive changes you may be experiencing affect your everyday activities. Here is a list of practical steps and coping suggestions to help with some of the changes. By Dr. J. Tamar Kalina 23 MSFocus Spring 2016 Practical Steps There are many ways to compensate for some cognitive challenges including the following tips For important events use organized reminders such as smartphone applications a calendar Post-it notes checklists alarm clockstimers etc. Try to leave commonly used items in the same location i.e. keys in a bowl or on a hook by the door. Engage in one task at a time to avoid unnecessary distractions i.e. turning off the ringer on your phone when trying to pay your bills or refrain from leaving the kitchen while cooking something on the stove. Tackle the more difficult tasks in the morning or at a time of day when you are not feeling fatigued. Repeat things to yourself out loud to help you remember them. Create associations between something you are trying to remember and some- thing familiar to you i.e. associating George your new neighbor with the first U.S. president. Staying organized though difficult at times can help minimize confusion and allow you to easily locate objects you may need. Having a routine such as always paying bills the same day each month or attempting to schedule appointments on a particular day of the week can help to reduce tasks you have to remember. Try to complete difficult or cognitively demanding tasks in a quiet environment. Concentrate on the task at hand. This may sound obvious but oftentimes our minds are constantly thinking about many other things aside from the current task.Attempt to refocus yourself so your undivided attention is on the task you are attempting to complete. Take your time when engaging in a task. Get a good nights sleep. Poor sleep or fatigue can worsen cognitive changes. Rest when fatigued or incorporate rest breaks throughout the day to avoid reaching the point of exhaustion. Remain socially and intellectually active. Eat well-balanced meals throughout the day. Manage stress as well as possible. Coping Strategies Dont be hard on yourselfThese cognitive changes that you may be experiencing are not your fault. Take the necessary steps to improve your abilities as much as possible and be proud of the progress you make Speak to others who understand what you are experiencing. There are many educational and support programs in-person call-in and online offered in various regions. There are also many clinicians specializing in MS who may have a better understanding of what you are experiencing. Explain to those around you how they can help Oftentimes loved ones want to help but do not know exactly how and may not understand how your cognitive changes are affecting you. Unwanted or inappropriate help however can be frustrating for the individual experiencing the challenge. Explaining to someone how she or he could be of assistance could benefit both of you. For example 24MSFocus Spring 2016 a mother calling to remind her daughter with cognitive challenges to take her medication three times a day when the daughter rarely forgets to take her medication can be perceived as an annoyance instead of being helpful. However the daughter may significantly benefit from her mother helping her with a specific task or errand. Cognitive changes can be extremely frustrating. Taking some of these practical steps or implementing some of these coping strategies may help minimize the way cognitive changes interfere with your life. Stay strong and positive in this battle because your endurance should yield positive results Dr. J. Tamar Kalina has been working in the field of multiple sclerosis for more than 12 years. She specializes is developing and implementing research and rehabilitation programs. Her research focuses on improving the functional independence and quality of life for people with MS. Dr. Kalina has personally designed more than 18 specialized rehabilitation programs and has experience running more than 100 MS clinical research trials. Dr. Kalina is an assistant professor at the NYU Langone Medical Center and adjunct faculty at Columbia University and NYU Steinhardt. DONATING YOUR UNNEEDED CAR VAN OR TRUCK CAN HELP FIGHT MULTIPLE SCLEROSIS MULTIPLE SCLEROSIS FOUNDATION 800-225-6495800-225-6495 CONVENIENT FREE PICKUP TAX DEDUCTION IN YOUR GARAGE WE DO ALL PAPERWORK 2017 Cruise Itinerary Saturday September 9th - Depart Fort Lauderdale 430 p.m. Sunday September 10th - At Sea Monday September 11th - At Sea Tuesday September 12th - Arrive Philipsburg 8 a.m. Depart 5 p.m. Wednesday September 13th - Arrive San Juan 7 a.m. Depart 3 p.m. Thursday September 14th - Arrive Labadee 930 a.m. Depart 6 p.m. Friday September 15th - At Sea Saturday September 16th - Arrive Fort Lauderdale 615 a.m. Book early to assure the stateroom of your choice. For more information or to make a reservation contact Gabriela Aragon at 888-408-4129 954-322-1030 or the Multiple Sclerosis Foundation at 800-225-6495 In order to participate in the MSFs programs aboard the ship your stateroom must be booked through the MSF at the above numbers. Patient Information TECFIDERA tek de rah dimethyl fumarate delayed-release capsules What is TECFIDERA TECFIDERA is a prescription medicine used to treat people with relapsing forms of multiple sclerosis MS It is not known if TECFIDERA is safe and effective in children under 18 years of age Who should not take TECFIDERA Do not use TECFIDERA if you have had an allergic reaction such as welts hives swelling of the face lips mouth or tongue or difculty breathing to TECFIDERA or any of its ingredients. See below for a complete list of ingredients. Before taking and while you take TECFIDERA tell your doctor if you have or have had low white blood cell counts or an infection any other medical conditions Tell your doctor if you are pregnant or plan to become pregnant. It is not known if TECFIDERA will harm your unborn baby. If you become pregnant while taking TECFIDERA talk to your doctor about enrolling in the TECFIDERA Pregnancy Registry. You can enroll in this registry by calling 1-866-810-1462 or visiting The purpose of this registry is to monitor the health of you and your baby. breastfeeding or plan to breastfeed. It is not known if TECFIDERA passes into your breast milk. You and your doctor should decide if you will take TECFIDERA or breastfeed. taking prescription or over-the-counter medicines vitamins or herbal supplements How should I take TECFIDERA Take TECFIDERA exactly as your doctor tells you to take it The recommended starting dose is one 120 mg capsule taken by mouth 2 times a day for 7 days The recommended dose after 7 days is one 240 mg capsule taken by mouth 2 times a day TECFIDERA can be taken with or without food Swallow TECFIDERA whole. Do not crush chew or sprinkle capsule contents on food. Protect TECFIDERA from light. You can do this by storing the capsules in their original container. What are the possible side effects of TECFIDERA TECFIDERA may cause serious side effects including allergic reaction such as welts hives swelling of the face lips mouth or tongue or difculty breathing PML a rare brain infection that usually leads to death or severe disability decreases in your white blood cell count. Your doctor should do a blood test before you start treatment with TECFIDERA and while on therapy. The most common side effects of TECFIDERA include ushing redness itching or rash nausea vomiting diarrhea stomach pain or indigestion Flushing and stomach problems are the most common reactions especially at the start of therapy and may decrease over time. Taking TECFIDERA with food may help reduce ushing. Call your doctor if you have any of these symptoms and they bother you or do not go away. Ask your doctor if taking aspirin before taking TECFIDERA may reduce ushing. These are not all the possible side effects of TECFIDERA. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. For more information go to General Information about the safe and effective use of TECFIDERA Medicines are sometimes prescribed for purposes other than those listed in this Patient Information. Do not use TECFIDERA for a condition for which it was not prescribed. Do not give TECFIDERA to other people even if they have the same symptoms that you have. It may harm them. If you would like more information talk to your doctor or pharmacist. You can ask your doctor or pharmacist for information about TECFIDERA that is written for healthcare professionals. What are the ingredients in TECFIDERA Active ingredient dimethyl fumarate Inactive ingredients microcrystalline cellulose silicied microcrystalline cellulose croscarmellose sodium talc silica colloidal silicon dioxide magnesium stearate triethyl citrate methacrylic acid copolymer - Type A methacrylic acid copolymer dispersion simethicone 30 emulsion sodium lauryl sulphate and polysorbate 80. Capsule Shell gelatin titanium dioxide FDC blue 1 brilliant blue FCF yellow iron oxide and black iron oxide. Manufactured by Biogen Inc. Cambridge MA 02142 or call 1-800-456-2255 This Patient Information has been approved by the U.S. Food and Drug Administration Revised 42015 29 MSFocus Spring 2016 MS is well known to cause impairment of strength sensation walking bladder bowel and visual functions. Until recently cognitive dysfunction was under-recognized in MS. Many recent advances have led us to better understand the vital importance of cognitive dysfunction and the growing need to identify measure and treat it. Cognitive impairment leads to a significantly negative effect on quality of life and is a leading cause of people with MS leaving the work force. Perhaps the largest challenge facing those with cognitive changes is simply recognizing that it exists. Cognitive symptoms can be subtle are rarely sudden in onset and can progress very slowly over time. This may lead patients loved ones and their care teams doctors advanced practice providers nurses etc. to overlook what may seem to be relatively minor thinking difficulties. As a result it is extremely important to actively screen for this and educate those with MS and their families of these possible changes. There have been numerous studies searching for an ideal screening tool for cognitive dysfunction in MS. Some of these options are briefly discussed here Symbol Digit Modalities Test Taking only 90 seconds to complete the SMDT is one of the most sensitive in-office screening tools readily available in both MS trials and practice. The Perceived Deficits Questionnaire and Multiple Sclerosis Neuropsycho- logical Questionnaire-self report While these are two of the most commonly used forms both correlate better with depression than cognitive dysfunction. The MSNQ-informant report Filled out by a close friend or family member this has been shown to be a sensitive screen for cognitive impairment but it is not always possible to have such a person attend a clinic visit. The Rao Brief Repeatable Battery of Neuropsychological tests The BRBN is comprised of different components and detects cognitive problems in 71 percent of cases relative to more involved batteries. It includes the selective reminding testthe 1036 spatial recall test the symbol digit modalities test the paced serial addition test and the word list generation test. While these screenings are helpful the gold standard for cognitive assessment remains neuropsychiatric testing. This is a more involved process including an intake visit to collect information about a patients background. The initial visit is followed by a second visit where testing is completed. Traditionally this is a 6-8 hour day of testing. Certain centers have started tailoring their evaluations for the MS population which has shortened these days to 3-4 hours. A third visit is By Matthew Carraro M.D. and Aaron Boster M.D. 30MSFocus Spring 2016 scheduled to review the results of testing. Unfortunately neuropsychologists are in short supply nationally and not all insurance plans cover neuropsychological testing. These barriers currently limit this important diagnostic tool. Brain atrophy measures especially gray matter volumes correlate very well with cognitive impairments in MS. Until very recently such unconventional imaging techniques were only available in the research setting. Today newly validated automated software packages are making such assessments of brain atrophy possible in the clinic.What exactly to do with brain atrophy results is another unanswered question. We anticipate that the field of brain atrophy will continue to grow and in the near future we can envision disease modifying therapy decisions based on brain atrophy changes. It is difficult to predict who will suffer from cognitive changes but these deficits tend to progress with time accumulation of white matter lesions and brain atrophy shrinkage. Cognitive changes tend to be worse in primary progressive and secondary progressive MS than relapsing-remitting MS. It is well established that early treatment with a disease modifying therapy can help to slow the symptoms of MS.This is true of cognitive changes as well even patients treated with first-generation DMTs showed improvement on multiple elements of the BRBN. To illustrate the importance of recognizing cognitive changes keep in mind they may be the first sign of failing your DMT. While a physical neurological examination may remain unchanged cognitive changes can prompt consideration of repeat MRI studies and possibly a switch from one DMT to another. It is also important to recognize that other common changes from and comorbidities with MS can worsen or cause cognitive changes. These include fatigue poor sleep spasticity chronic pain depression and medication side effects. It is critical for healthcare professionals to screen patients to determine if these issues could be worsening their thinking. Untangling the web of these complex symptoms is essential so that the root problem can be addressed. In a situation where a person with MS is experiencing poor sleep a careful history could reveal difficulty falling asleep due to poor sleep habits or sleep hygiene. This is readily treatable with behavioral modifications such as never watching television in bed or forcing yourself to get out of bed if you have been lying awake for more than 15 minutes. The same patient history may also reveal symptoms of obstructive sleep apnea including waking fatigued snoring and witnessed apneic episodes by bed partner. Such a history should lead to a formal sleep study polysomnogram. Sleep might also be impaired from waking up to use the bathroom because of urinary urgency. In this case a simple urinary antispasmodic medication may improve sleep fatigue and cognition with a single pill. Likewise those with spasticity can suffer painful cramps and spasms that can significantly disrupt sleep. Very commonly in people with MS untreated or undertreated depression can lead to pseudo-dementia.The ability to pay attention decreases with depression which can lead to cognitive changes. If you are unable to listen effectively you will not form memories in a meaningful way. This can cause a feeling of forget- 31 MSFocus Spring 2016 Matthew Max Carraro M.D. is a board-certified neurologist who is completing his fellowship in multiple sclerosis and neuroimmunology at OhioHealths MS Center. He is passionate about early implementation of highly effective disease-modifying therapies and the use of intrathecal baclofen pumps for the management of severe spasticity. Originally from Chicago he completed his undergraduate training at the University of Wisconsin Madison followed by medical school internship and neurology residency at The Ohio State University Medical Center. In his free time Dr. Carraro enjoys running hiking cooking and spending time with his wife children and dog. Aaron Boster M.D. is a clinical neuroimmunologist specializing in multiple sclerosis. As a neuroimmunologist Dr. Boster provides diagnosis and treatment for all types of MS as well as a wide range of neuroimmunological conditions. These include neuromyelitis optica neurosarcoidosis central nervous system vasculitis NMDA receptor encephalitis transverse myelitis optic neuritis stiff-person syndrome and more. He also provides medical management of refractory severe spasticity with expertise in all treatment modalities including intrathecal baclofen. Dr. Boster is board-certified by the American Board of Psychiatry and Neurology and is a member of the American Academy of Neurology. He enjoys spending time with his wife and two children weightlifting playing chess and likes trying new foods. fulness. However cognitive worsening can reverse as depression improves In these cases treatment with counseling or antidepressants should be considered. Exercise can also have immense benefits in reducing pain and spasticity improving sleep and improving depressionanxiety. Neuro-physical therapy is a great way to engage people with structured programs that can be continued at home or a gym. We encourage our patients to be as active as they can be. Some with MS may benefit from the judicious use of stimulant class medications prescribed with careful supervision by their treating MS neurologist. This review only scratches the surface of this emerging and important issue in MS care. We and many others in the fight against MS will continue to work to better understand this subject and give it the attention it deserves both in articles like this in research and in the clinic. We challenge you as people with MS and their loved ones to advocate for yourself talk to your care team request cognitive screening with every visit and discuss questions that may have been raised while reading this article. MSFocus Spring 2016 32 The theme for this years National Multiple Sclerosis Education and Awareness Month was Beyond MS and the campaigns reach went beyond all measure thanks to the efforts of MSF Ambassadors affiliated support groups and people like you. Here are a few of the highlights. The MSF hosted or attended programs in a dozen cities around the country including the Pittsburgh area 1 where cold and rainy weather didnt stop a large crowd from coming out to hear Wendy Booker 2 share her inspirational story. Summing up the program one participant said It gave people hope.Another addedWe can do anything Thats also the Beyond MS message. MSF Ambassadors advocated for awareness by requesting their local governments officially recognize the NMSEAM campaign. In Rhode Island Allan Fung mayor of the city of Cranston 3 personally attended an MSF event to present a proclamation to the MSF and Ambassador Kathleen Crudele. Ambassadors also raised awareness by sharing their stories with local media. Chad Bolema 4 gave his account of going beyond MS with a clinical trial on Fox 17 in West Michigan while other ambassadors such as Kathy McCane 5 were profiled in local newspapers and magazines for their efforts. The MSF-affiliated My Story Our Story MS Support Group in Randallstown Md. 6 is one of the many groups in the MSFs Independent Support Group Network to hold special awareness events.From small gatherings to large public events 1 5 2 3 4 6 7 8 9 33 group members shared their personal stories distributed MS awareness kits and helped their communities to learn more about MS. Derrick Lee associate director of Quality of Life Programs 7 represented the MSF on Capitol Hill where he and other participants of an annual public policy conference met with Congresswoman DebbieWasserman Schultz 3rd from right and other representatives to encourage support of legislation that positively affects those with MS. MSFs Director of Program Services Natalie Blake 8 attended the Raising Spasticity Awareness Summit hosted by Cullari Communications Global and Mallinckrodt Pharmaceuticals. Its estimated that 78 percent of those who have MS experience spasticity yet many are not aware of the symptom or the treatments available. Natalie made a presentation regarding best practices and discussed the programs MSF provides. MSF will be participating in Spasticity Awareness Week June 13-19. MSFs teleconference series hit a new high point with six teleconferences in the month of March. Mark Shalloway Esq. certified elder care attorney and a member of the MSFs board of directors 9 went above and beyond for those with MS during his teleconference. Not only did he deliver an outstanding presentation on estate planning for those with special needs he also provided a written guide on the topic now available through the MSFs website. MSFocus Spring 2016 Going Beyond March Did you miss any of our programs in March Heres whats still available MS Awareness Kits A limited supply are available. Call 888- MSFocus to receive a free copy or view the materials online at msfocus.orgnational-ms-awareness- month.aspx. Teleconferences Hear replays of our teleconferences on MSFocus Radio or download the free app for your mobile device or on-demand at httpssoundcloud.comms-focus. Live Programs Several of our live programs were filmed and are now available on our YouTube channel at Make sure you are on our mailing list to receive invitations to live programs in your area. Call 888-MSFocus or email 34MSFocus Spring 2016 The MSF would like to thank OUR FEATURED SPEAKERS Ben Thrower M.D. THE MSF AMBASSADORS AFFILIATED SUPPORT GROUP LEADERS OUR DEDICATED STAFF AND YOU FOR SUPPORTING THE NATIONAL MS EDUCATION AND AWARENESS MONTH CAMPAIGN. The MSF would like to thank Patty Bobryk MHS PT MSCS ATP MS Cherie Binns RN Wendy Booker founder Climb On Foundation David E. Jones M.D. Daniel Kantor M.D. Claude Oster DO Jeffrey A. Segal CSCSD NSCA-CPTD CPTS Mark Shalloway Esq. certified elder care attorney OUR SPONSORS 35 MSFocus Spring 2016 First-ever Campaign Raises Relapse Awareness Relapsing MS is a challenging and unpredictable disease. A person with relapsing MS may be well one day and severely disabled the next with no indication as to what brought on the relapse or when it will remit Natalie Blake director of Program Services for the Multiple Sclerosis Foundation said. To maintain quality of life it is important for those with MS to understand how to prepare for manage and recover from relapses. So last March the Multiple Sclerosis Foundation and Multiple Sclerosis Association of America teamed up to promote the first-ever MS Relapse Awareness Week March 21 27 2016 with support from Mallinckrodt Pharmaceuticals. During the week the Foundation hosted a national teleconference and live program Everything You Need to Know About MS Relapses presented by MS specialist Daniel Kantor M.D. available on the Foundations YouTube channel at Popular MS blogger Matt Cavallo related his personal experience with relapses in a web-exclusive article on and others with MS offered their insights and tips learned in previous relapses using the hashtag mymsrelapse. The MSAA made materials available through a special Relapse Awareness online resource center found at 39 MSFocus Spring 2016 Illness affects people physically emotionally and spiritually. Karen Zielinski examines illness through the lens of spirituality in Hope and Help for Living with Illness. Karen has been living with multiple sclerosis since 1975 but her teachings are broad and applicable to any sickness. If you are an atheist this is not the book for you. She is a Catholic sister of the Franciscan order and seamlessly weaves religion along with personal practical anecdotes into the story. The book comes with an annotated bibliography as Karen draws on wisdom from several people from the Dalai Lama to Helen Keller and a number of saints. Karen uses her own experience with MS and shares her coping mechanisms through the different stages of disease. The book takes the reader on a journey starting with admitting that one has a disease. Karen explains once you can name and claim your disease only then can you ask a higher power for help. Karen mentions her own and other sick friends experiences. Each chapter poses a new hurdle such as preparing for medical tests anxiety about health insurance or having an invisible illness and then the author wraps up each chapter with a prayer tailored to each hurdle. Karen believes that prayer and communication with a higher power along with medicine and doctors visits formulate a complete healthcare regimen. The author touches on the virtue of charity as a form of healing. Karen says helping others gets you outside of your situation and shifts your awareness from self-absorption to other people. The author believes suffering is the cornerstone of emotional and spiritual growth We can take our suffering not change it but control what we do with it. Karen believes that a reliance on God helps overcome any hurdle We are not in control and whatever God gives is gift to us. The author hopes sharing her story will help others overcome the complications that come with illness. HOPE and HELP for Living with Illness by Karen Zielinski Review by Marianly H. Primmer To borrow this and other titles call the MSF Lending Library at 888-MSFocus 673-6287 or visit Click on Lending Library under the Programs and Activities heading. Hope and Help for Living with Illness by Karen Zielinski 115pp. 12.99 40MSFocus Spring 2016 My Life with Multiple Sclerosis By Diana Valeriano It was a beautiful hot day in July and I was sitting by the pool getting a suntan when I noticed my right hand had a prickly feeling in it like when your hand falls asleep. I didnt think anything of it. I rubbed it and the feeling came back. Later on I went in the house and showered and dressed. As the days went on my right hand kept getting numb until my whole arm was numb and stayed numb. I went to three different doctors to see what the problem was. One told me I had diabetes he didnt do any tests but I mentioned my brother was a borderline diabetic and so he assumed I was too. Another doctor told me I was under too much stress as I was going through a divorce. The third one this one was the best said I had a pinched nerve because of an auto accident. I told him I had not been in an accident and he told me I had been and just didnt remember A friend of mine was going to a chiro- practor at the time and wanted me to go see him so I finally gave in and went. He took X-rays and told me he would have me using my right arm within three months. Well he applied acupressure and within one month my arm was back to normal - no numbness - and I was able to do every- thing with my arm as before. So I kept going to him it felt good to have my bones cracked. About a year later my numbness came back but not as bad. So I went to UCLA they could surely tell me what was happening. They ran tests and after three days of testing they told me I had multiple sclerosis. I had never heard of it and I asked the doctor how long I had to live. He told me people with MS live a long time. He explained what MS was. I kept my disease hidden. I only told my children. I made light of it. They were young and didnt realize how bad it could be because I was walking well and felt fine. I just tired easily. I was dating someone at the time so I told him but was ashamed to tell anyone else. I was embarrassed that I had MS. Soon I was dragging my leg and limping. I wondered why I was afflicted with this disease. The man I was seeing had a sailboat now that I look back thats really why I went with him I loved sailing. One weekend we went with two other couples each couple in their own boat to Catalina. It was beautiful and hot. We anchored and decided we would go ashore for lunch. After lunch we took a walk along this trail to the water and turned around to come back to our dinghy which we would row back to the boats. It was so hot on our walk back I fell three times. They finally had to put me in a cart to get me back to the dinghy. I had no energy whatsoever. Once I cooled off on the boat I was fine. I was scared as this had never happened to me before. Later that night I told the other couples I had MS and suspected that was the reason for my falling. On Monday I called UCLA and they said it was the heat. I learned something new that weekend. I learned that people with MS cannot take extreme heat me who loved the heat and baking sun I would always lay out and get a beautiful tan. The gentleman with the sailboat broke up with me he couldnt accept that I had MS. But I have learned to live with this disease without feeling embarassed. Now many years later I am in a power wheelchair. I have MS but it doesnt have me. I cant dance or run but I keep as active as I can and I have my faith. I go out to lunch with my friends or have them over go to the MS support group meetings and attend bible study and church. I became an ambassador for the Multiple Sclerosis Foundation so I can spread the word about the services of the Foundation and help people who have MS. For a person who didnt want to talk about having MS now I talk up a storm about it Diana Valeriano of Thousand Oaks Calif. was diagnosed with MS more than 30 years ago. Confined to a motorized wheelchair she learned to manage her limited mobility training herself to write and use a computer with her left hand after her right one became paralyzed. She is a peer counselor to those newly diagnosed with MS and has published a cookbook of recipes with proceeds supporting MS research. Visit Our Website At 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 Show Your Support for the Visit www.zazzle.commsfocus 41 MSFocus Spring 2016 42MSFocus Spring 2016 Keeping a Finger on the Pulse In an effort to keep our finger on the pulse of the needs of the MS community and to improve our services that raise the quality of life for those with MS Program Services is now sending a survey with our applications. If you get an application in the mail please fill out the survey and send it back with your application. We appreciate and welcome your feedback. Finding Respite Are you aware that respite care is available through MSFs Homecare Assistance Grant Care partners often put off taking care of their own needs in order to provide care to their loved ones. MSF recognizes that MS affects the whole family. Call if you would like more information on this program. Awareness Kits Available Did you receive a 2016 National MS Education and Awareness Month Awareness Kit from MSF If not they are still available. Call our support line at 888-673-6287 and we will send it to you. It includes valuable information on overcoming some of the major obstacles associated with living with MS.The MSF is dedicated to helping you move Beyond MS. Dr. Thrower on YouTube The MSF is featuring a series of talks by MS specialist Dr. Ben Thrower on our YouTube channel. The presentations were recorded at the Shepherd Center in Atlanta. Dr. Thrower covers a variety of topics from walking to MS pain to MS- 101. The series will continue on YouTube for the next six months. Find us at YouTube.commsfstaff. Keeping Your Cool While its true that heat may intensify MS symptoms cooling can offer significant relief. The Cooling Program is taking applications through June 1.Applications can be submitted online or through the mail. All applications are confidential and will be reviewed by the grant committee. For more information on the MSF Cooling Program or to access these services call 888-MSFOCUS 673-6287 In Our Office Health and Wellness Program Coordinator Alma Henry coordinates and funds group and individual programs in several states. She has been with the MSF for nearly 12 years. She started out as a caseworker then lead caseworker and trainer then CAM Coordinator which was renamed Health and Wellness Program Coordinator. I enjoy working with the Multiple Sclerosis Foundation as there is hardly ever a dull moment here. Sharing the happy and sad times with the staff service providers and those with multiple sclerosis has been a pleasure I most certainly do appreciate. By Alissa Ayden The Multiple Sclerosis Foundation Independent Support Group Network is growing Please welcome the following newly-affiliated groups Cornerstone MS Support Group Cherry Log Ga. Marion County MS Warriors Support Group Belleview Fla. My Story Our Story MS Support Group Randallstown Md. Newnan MS Support Group Newnan Ga. River Area Guerneville MS Support Group Guerneville Calif. 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 nearest you. Im very pleased to share some exciting news with all of you. The Multiple Sclerosis Foundation is dedicated to participating and supporting efforts on a national scale to improve the quality of life for those affected by MS. One recent and exciting way in which we are doing this is through participation in the efforts of the Patient-Centered Outcomes Research Institute. PCORI is a nonprofit organization located in Washington D.C. that was authorized by Congress in 2010. PCORI funds comparative clinical effectiveness research in order to improve the evidence available to help patients caregivers clinicians employers insurers and policy makers make informed health decisions. Last fall PCORI announced that they would be funding up to 50 million in comparative clinical effectiveness researchpatient-centered outcomes research related to the treatment of multiple sclerosis. Recently I received word that I had been selected to be a PCORI merit reviewer and will be responsible for reviewing applications as part of this funding cycle for research related to MS. I am honored to be a part of this process and look forward to representing the voices of members of our affiliated support groups and the entire national MS community. Please stay tuned for further updates in our upcoming issue. As always if you are interested in applying to start or affiliate a support group please contact Alissa Ayden at 888-MSFOCUS 673-6287 or 43 MSFocus Spring 2016 47 MSFocus Spring 2016 For the third year in a row during the month of March seven Jersey Mikes locations in Florida helped spread the word of National Multiple Sclerosis Education and Awareness Month through donations and customer discounts.The company held its annual Day of Giving in which 100 percent of all sales are donated to their charity partners on March 30. A huge thank you goes out to Hillary Hutchinson and all of the Jersey Mikes staff at all seven locations Their incredible dedication and generosity throughout the month has not gone unnoticed and will surely make a difference. The Multiple Sclerosis Foundation also partnered with Alex and Ani of Las Olas Kendra Scott of Mizner Park Wish by Amanda Rose Collection Sparkle of Life with Floridian Community Bank and Wines for Humanity with Alpine Jaguar by hosting events that shared proceeds with MSF throughout the month. Shoppers enjoyed making purchases knowing that a percentage of proceeds would help those with MS and their families. Thank you to our Special Events Fundraising Volunteers Join the Hike joins forces with the Other Side of the Tracks art show for the MSF Regular readers of MSFocus magazine may recall the feature about nature enthusiast Jim Lewis and his ambitious Join the Hike journey and giving campaign for the MSF. Jim built an impressive network of supporters and admirers with his own pledge website and Join the Hike for MS Facebook page. On March 5 Jim accompanied by his loyal canine companion Nika embarked on an epic 1165-mile hike along the Appalachian Trail starting from his home base in West Virginia. Ultimately this dynamic duo will traverse 10 states and likely spend five months to reach their destination point in Katahdin Maine. Even more impressive is that fact that Jim was diagnosed with MS in 2009. Following 48MSFocus Spring 2016 the onset of severe symptoms which left him confined to a wheelchair he resolved to fight back. Through diet physical therapy staying active making simple life changes exercise determination and perseverance Jim regained his ability to walk and his passion for hiking and the outdoors was revitalized. In support of Jims charitable efforts for the MSF his friend Crissy Knotts decided to organize a fundraiser of her own the Other Side of the Tracks art show which took place at the 147 North caf in Winchester Va. Winchester is also the starting point for Jims Join the Hike Appalachian Trail expedition. Each contributor to the show paid 10 per painting as a submission fee and also chose one piece as a 100 percent donation. Artists were Crissy Knotts Kirk Cary Josh Ries Devon DeCarlo Trae Albright Deron Raynor Marie Tritchler Bailey Smith Brent Miller Kayla Jones Tracy Ries Lydia Ries Stephanie Thirkield Jim Lewis Leeann and Tacarra. Though the pieces offered for sale were worthy of exhibition in any fine art gallery it was hardly a subdued affair with two bands playing and entertaining the crowd Noetic Pull and Nagavora. Jimmy Lewis set up a MSF awareness table to offer MS info as well as updates about his Join the Hike preparations and social networking. By days end nearly 1000 was raised from artist submissions art sales and donations. We are sincerely grateful for the support offered by 147 North and for the efforts of the staff and volunteers who did the hard work of mounting and displaying all of the pieces for sale. A special thank you to Crissy who helped spread the word with posters and social media resulting in a fantastic turn out and all of the talented artists who so generously donated their creativity to the MS cause Flippin For a Cause For the fourth 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 National MS Education and Awareness Month and the memory of Eric Leon the brother of the schools director who had MS.Teacher Helene Kuperberg acknowledged her appreciation of her schools donation of breakfast items the support of parents and enthusiasm of the children. She said This annual event provides a great opportunity to support MSFs programs and services while helping instill in the children a basic understanding of charitable giving. 49 MSFocus Spring 2016 For tickets or more information about these events contact Nathalie Sloane at 954-776-6805 or Upcoming MSF Events 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 Mad Hatter Luncheon and Fashion Show 2016 Keynote Speaker and Fearless MS Motivator Lisa Kaufman May 27 at the Hyatt Regency Pier Sixty-Six Panorama Ballroom Fort Lauderdale Fla. Bourbon and Blues MSFs 30th Anniversary Gala Dec. 3 at the Ritz-Carlton Fort Lauderdale Fla. Dress4MS Sharon Osbourne Teams with MSF for Awareness Campaign Sharon Osbournes biography describes her as a television host media personality television talent competition judge author music manager businesswoman promoter and the wife of heavy metal singer-song- writer Ozzy Osbourne. Add to that description loving mother and MS advocate. Since son Jack Osbourne was diagnosed with multiple sclerosis in 2012 Sharon has lent her substantial influence to the MS cause. Now shes teaming up with the Multiple Sclerosis Foundation for an awareness campaign about the disease that both enlightens about MS and celebrates the organizations 30th anniversary of serving the MS community. Dress4MS is a print and social media campaign designed to spread awareness virally. It highlights the challenges that MS can bring explaining that the fatigue pain and other symptoms MS can cause can make a simple task like getting dressed for the day take all the effort of getting ready for a blacktie affair. See and share Sharons video about the campaign at 51 MSFocus Spring 2016 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 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... 52MSFocus Spring 2016 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 U.S. Preventive Services Task Force The U.S. Preventive Services Task Force USPSTF is an independent volunteer panel of national experts in prevention and medicine. The Task Force created in 1984 works to improve the health of all Americans by making evidence-based recommendations about clinical preventive services such as screenings counseling services and preventive medications. All recommendations are published on the task forces website. Task force members come from the fields of preventive medicine and primary care including internal medicine family medicine pediatrics behavioral health obstetrics gynecology and nursing. Their recommendations are based on a vigorous review of existing peer-reviewed evidence intended to help primary care clinicians and patients decide together whether a preventive service is right for a patients needs. The task force assigns each recommen- dation a letter grade based on the strength of the evidence and the balance of benefits. The drawbacks of a preventive service are also considered.The recommen- dations apply only to people who have no signs or symptoms of the specific disease or condition under evaluation. And the recommendations address only services offered in the primary care setting or services referred by a primary care clinician. Each year the task force makes a report to Congress that identifies critical evidence gaps in research related to clinical preventive services and recommends priorities that deserve further examination. The goal of these recommendations is not only to offer guidance to doctorsnurses and other primary care professionals but also to provide patients and their families with the most accurate and up-to-date information on ways to prevent illness and improve health and well-being. On its website you will find easy-to- understand information on health topics for which the task force has released a recommendation. These materials include guides fact sheets slideshows and videos available for view and download. You can sort the table by document title type of material and recommendation title or simply browse using the search function. These materials are designed to inform people about task force recommen- dations and are not intended to replace advice from a health professional. To access the USPSTF website go to www.uspreventiveservicestaskforce.orgPageNameabout-the-uspstf. While cognitive problems affect almost everyone as they agethe cognitive problems for MS patients are often more prevalent and life-altering.There is a lot of hype about using brain-training apps to improve cognitive difficulties. However there is limited research to show that these apps actually change any physiological brain functioning. Added to that is the fact that they often have subscription fees. There are many other ways technology can help with the cognitive challenges you face on a daily basis. Task and List Reminders Writing lists and reminders on paper can present several drawbacks. First paper often gets lost misplaced andor forgotten. In addition fine motor skills may be a problem. How many times have you written something down only not to be able to read it later Most mobile devices come with reminder list apps. If typing on your device presents difficulties you can use voice commands to make the process very simple. As you think of things to do or items to add to a list you can just enter them on your device. If you depend on others for transportation you can be ready with your list at a moments notice. Organize your lists into categories such as groceries and household products. The lists can be color coded for ease of identification. Also the items on your list can be reordered. For example you can organize your grocery list by aisles in the store. If you repeat tasks on a regular basis you can have these events automatically added. The reminder part of this type of app is almost indispensable. You can set notifications to be reminded of tasks and appointments. The time sound and type of reminder are easily controlled. You can even set the reminder to text you when you need to be alerted. This type of app helps ensure that you and your caregiver can be more efficient and lowers frustration levels when running errands or performing tasks such as taking medication. Calendar Keeping track of appointments and events can present unique challenges if you have cognitive issues. The calendar app makes this task a lot less daunting. Organizing events by color is a simple visual cue. For example all medical appointments can be blue and all travel events can be black. Also searching your calendar events makes tracking appoint- ments a breeze. If you want to know how many visits you made to a particular doctor a search of your calendar will list those appointments instantly. Calendars can be shared making giving others a copy of your appointments easy. Events that are repeated can be entered once and then Improve Your Cognitive Challenges with Technology By Joanne Fortunato 54MSFocus Spring 2016 55 MSFocus Spring 2016 based on your input can be duplicated automatically. It can be a big stress reliever to know that someone else can help you keep track of your appointments. Contacts Contact apps are similar to an address book but are more efficient. No more cross-outs every time a contact changes a phone number or an address. You can add an email address a ringtone a picture and a few other useful features.The picture and ringtone feature help to easily identify the caller if you have a hard time with this task. The note feature allows to you to add relevant information. Listing all your medical contacts in one list or group makes it easier for you or a caregiver to find needed information quickly. And searching your entire contact list is very simple. Contact apps make finding people and places amazingly simple. Syncing Between Apps The ability to synchronize information between apps is perhaps the biggest reason to organize electronically.In additionmany programs can access the organization apps mentioned previously. Email phone and messaging apps are commonly used for this purpose. For example when you are sending an email all you need to do is start the email address and it will access your contacts and pull up a contact that matches what you have typed. When you enter a name or place in your calendar the address for the appointment is auto- matically added. Many third-party apps will access contacts calendar lists and reminders. Generally you are asked for permission for access when installing the app. Location Services and Backing Up When you purchase your device location services are turned on. This means that your GPS location is used for such things as maps and photos. While this can be helpful it should be used cautiously because of privacy and security concerns. In addition using location services is a battery hog. You can turn onoff location for all apps or you can do this for apps individually. Stick to your usual organization tech- niques until you feel comfortable with electronic methods. That way you lessen the risk of losing information. In addition make sure you backup your information. IOS Apple and Android Google Samsung etc. often provide space for holding your data.This is referred to as the cloud.This simply means you are given space on the companys server. This can be accessed anytime you are connected to the Internet. Electronic organization has many benefits for everyone not just MS patients. Letting go of your old methods can be trying but using technology can make simple tasks much easier and provide additional useful information. You and your family andor caregivers will find that many serious complications can be avoided by having your information readily available. 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. Contact Joanne at 56 HOWWE HELP Multiple sclerosis is the second most costly chronic condition to manage. Each year thousands turn to the MSF for assistance with needs they cannot afford but which cannot be ignored.Thanks to the generosity of our supporters we are able to provide vital services. QUICK FACTS WHAT SERVICES DOES THE MSF PROVIDE FOR THOSE WITH MS Homecare Respite care Physical therapy Speech therapy Occupational therapy Medical equipment Assistive technology Home modifications Vehicle modifications Transportation assistance Prescription copays Support groups Cooling garments Computer equipment Wellness programs Exercise classes Doctors visits Emergency assistance The MSF also provides printed materials education and outreach programs for patients family members and healthcare providers. With national headquarters in Fort Lauderdale Fla. the MSF serves the nation from one centralized location. By eliminating the need for branch offices while networking with independent local grassroots organizations we are able to maintain a cost-effective and efficient operation providing the highest quality of service. All MSF programs are funded through voluntary contributions. There are no fees or charges for any MSF services. Consequently your donation is essential in helping meet daily needs and improve quality of life. What is the MSF The Multiple Sclerosis Foundation is a service- based nonprofit organization established in 1986. The MSF provides a comprehensive approach to helping people with MS maintain their health and well-being. We offer programming and support to keep them self-sufficient and their homes safe. Our resources assist people who have MS their families and caregivers regional support groups and healthcare professionals. Our priority is to serve with empathy resourcefulness and responsibility. All MSF services as well as information literature and subscriptions to our publications are provided free of charge. The MSF respects the privacy of our clients and donors and does not share sell loan or exchange their information with other nonprofit organizations or commercial enterprises. Support services coordinators are available 830 a.m. 7 p.m. EST Monday-Friday. Call Toll-free 888-MSFOCUS 673-6287 MITOQ.COM YOUR CELLS POWER YOUR BODY. MITOQ POWERS YOUR CELLS. FRASER H. SCOTLAND Sufferer requiring functional electrical stimulation FES for a dropped foot I dont want to raise false hopes but I can bite my tongue no longer. Ive been on MitoQ now for nearly 12 weeks. Ive gone from someone requiring assistance to dress cook and do laundry. Now I am at a point of dressing myself cooking and doing my own laundry. My walking has improved greatly. Indeed Ive just completed a three day weekend with no assisted care at all. This morning my carer pushed the vacuum cleaner about. Thats it. My mind is awash with the possibilities. The daily cost is equivalent to half a cup of decent coffee. At that price I cant afford not to take it. Im looking forward to a future I could never have dreamt of before. To hear Frasers full story go to mitoq.comyour-stories A link between mitochondrial dysfunction and neurological function has been established. Experts have suggested that symptoms of fatigue or reduced energy could be related to mitochondrial dysfunction. Mitochondria become damaged with age and environmental factors and in some cases more than others. Free radicals damage molecular structure and whole body systems such as our immune system are affected. Scientists today target mitochondria as a promising new avenue for neurological support and energy. MitoQ is a revolutionary mitochondrial-targeted supplement that contains Coenzyme Q a potent antioxidant. MitoQ penetrates mitochondria up to 847 times more effectively than CoQ10 supplements because it has a positive charge. This means it is drawn into the negatively charged mitochondria unlike regular CoQ10. MitoQ reduces oxidative damage to help support neurological function and energy along with healthy ageing. These statements have not been evaluated by the Food Drug Administration. This product is not intended to diagnose treat cure or prevent any disease. Sold and distributed by MitoQ Ltd Auckland New Zealand. MITOQ.COM I now have the energy to lift my legs rather than drag them through. wI no e tvw ha he energyr OMCOQ.MIT than o liftt eor nearly 12 ww fno aiseo rant tI dont w equiring fuer rerSuff TLAOSER H. SCFRA ag thdr y legt m eeks. y te malse hopes but I can bite ffalse hopes but I can bit tion timulaunctional electrical s AND ohem thr theags r e been on Mit. Ivongue no longerr. Ivt ootopped for a drFES f .ough r gy oQMit s full sasero hear FrTTo hear Fr oeamt of befe drvha et prict tha. Aeeoffc ash with the poswMy mind is a er pushed they carm omt ce jusIndeed Iv ysing mespoint of dr om somee gone frIv eor nearly 12 ww fno otour-syomycoq.o mit go toryts .eor e it. Im looking fo takd not tor I cant aff ohe daily csibilities. Tith the pos sthaacuum cleaner about. Te v end weeky wee daed a thrmplet wn laundryy oooking and doing m cselff cy eo dre ttancsisequiring aseone r eeks. ories ould nee I co a futurd tarorwlooking f o half a cup of decalent tt is equivos it. his mt all. Te aed cartsisith no as voalking has impr. My wlaundry w I. Noook and do laundrys ces ervuld ne entdec morning .tlyeaed gr t aam a ely ctivo the negaint oQ10 supplementsely than Cectiveff eoenzyme Q a potC oQ is a r. Mitgyand ener gy tarodats tScientis such as our immune e than others. Fmor omochondria becMit ochondrial dyo mitt e suggevExperts ha oeen mitA link betw ee rochondria unlikmitgedchar because it has a positivQ10 supplements taoQ penetrxidant. Mitent antio ochondrial-tarolutionary mitveis a r omising neochondria as a prget mit ed.ecte affem artsye s adicals damage molecularee rr virme damaged with age and en sfunction. tigueaoms of fymptt sed thates sfunction and neurochondrial dy xes oeducoQ r. MitoQ10egular C his means it is dr. Tgee chara positiv 7 timeo 84ochondria up tes mitt ot ced supplement thagetal-tar ological supportor neurenue fvw ag ne tsy and whole body setructurs ors and in some cactonmental fr elaould be rgy ced enereducor r taological function has been esr etivxida wnais dr ees mor ntains upport emst cases edta ablished. OCOQ.MIT evee or prt curea tro diagnoset e not been evements hattahese sT o help supdamage t yg OUR CELY OM d AtoQ Ly Mited btribut. Sold and disy diseasent an his prtion. Tatrdminisood Drug Ay the Fed btaluavn e ological function andpport neur g OUWER YLLS PO ealand.w Zuckland NeA endedoduct is not ints pr y age along with healthgyener g .YUR BOD ing. OQ POMIT OUR CELY OUR CEWERS YO OUWER YLLS PO ELLS. .YUR BOD MSFocus Spring 2016 By Jeffrey N. Gingold There was room for the woman and her child to pass me on the sunbaked sidewalk but she suddenly grabbed the little girls hand and pulled her against the building. I was wearing sunglasses and walking with my cane and as I passed them I heard the whispered word blind. My car was parked curbside and I wondered if they were still watching me as I got into it and drove away. No MS does not mean More Simple. Its a complicated disability. For example while I have adjusted to walking with a caneshifting all other tasks to the available hand is another challenge.Simple functions now require some obvious assistance but finding a cane to support cognitive deficits is as elusive as the thinking challenges themselves. Gaps in my mental processing and recollection of faces locations and tasks have been troublesome and may be invisible to others. The physical and cognitive disabilities have altered my life but I refuse to let MS have the last word. While presenting worldwide on the topic of MS cognition I have met others who feel the same way. They are resilient and welcome an informed conversation validating their stealth MS cognitive symptoms along with learning and sharing successful coping strategies. It may be difficult to move beyond the stigma of having a mental concern but when you do useful answers become clear. They may not be the same answers for every- one but there are common themes to build upon. Keeping these markers in mind has helped guide me through the MS mental twister. As I continue to share techniques for coping with cognitive impediments Im mindful of MS limitations that often ground me physically and mentally. Even if I try to ignore it MS reminds me of its presence. Instead of dwelling in denial I prefer to focus on finding a supportive forward pace. It may be bizarre but one of my inspirations comes from the third Indiana Jones movie. In an effort to save his father Indy must urgently cross a bottomless rock chasm without a bridge spoiler alert. As he discovers there is an imperceptible passage across the gap. Indy tosses a handful of pebbles to outline the edges of the narrow link watching the rest of the stones fall off into the abyss. With a marked route the crossing was still difficult but guided. With that visual in mind these are just a few recommended MS cognitive edges that help me move toward a goal. 58 Finding Your Cognitive Edges 59 MSFocus Spring 2016 1. Declutter your living area and mental tasks leaving clear space to function and organize your thoughts. If it is not needed in the near future then store donate or toss it. 2. Use separate lists to track daily and long-term projects. Crossing off accomplished items is empowering. 3. Identify your Safety Person. This is a trusted go-to individual who already understands your cognitive challenges and can step in to let your mind clear and keep you safe. 4. Rest and regroup as needed like recharging your cell phone. 5. Regularly exercise your mind and body. There is no app to have anyone else do it for you. These are just a few of the pebbles that I use to mark my mental edges. Although my concentration and organizational skills have been compromised I am determined to not let other MSers flounder in the shadows of cognitive challenges. That was my original motivation for writing books on the MS cognitive subject and why I continue to donate 100 percent of the royalties to MS research and education. The MS community understands that MS may narrow abilities and priorities but that should not be an end point for us. Writing and exercising reminds me that if my MS path is obscured then I can still take steps to move forward and share what I have learned. So can you. I continue to be inspired by folks with MS sharing their effective cognitive tactics and making a difference in the lives of others. I strongly recommend viewing the Staying Smart website by the MS Trust U.K. It is filled with additional cognitive tips tricks and videos from MSers over there. Despite MS remember to celebrate your accomplishments and cut yourself some slack on the rest. Be in charge of your MS by marking the edges of your cognitive challenges and then confidently move forward. Jeffrey N. Gingold is the internationally acclaimed author of the award-winning book Facing the Cognitive Challenges of Multiple Sclerosis as well as Mental Sharpening Stones Manage the Cognitive Challenges of Multiple Sclerosis. 60MSFocus Spring 2016 Estimates of the number of people with MS who suffer from some degree of cognitive impairment vary. However cognitive impairment is more common in people with progressive disease compared to patients with relapsing-remitting disease. Cognitive impairment is not absent however from patients with early disease. Dr. Ben Thrower medical director of the MS Institute at the Shepherd Center saidcognitive impairment can be observed in patients with both clinically isolated syndrome and radiographically isolated syndrome and up to 20 percent of patients with benign MS experience cognitive impairment. Cognitive impair- ment tends to be more severe in patients with a longer duration of disease and those having signs of irreversible neurological deficit. There are currently no Food and Drug Administration products approved to treat MS-related cognitive impairment. This is because many factors can cause or exacerbate cognitive impairment in patients with MS. According to Dr. Thrower medications are sometimes the offending agent and can contribute or worsen cognitive impairment. Dr. Thrower said Tweaking or changing medication regimens can sometimes improve the symptoms of cognitive impairment. Anticholinergic medications perhaps the most common cause of cognitive impairment Anticholinergic medications are one of the most common causes of acute and chronic cognitive impairment in patients with and without MS. Anticholinergic medications are a class of drugs that block the action of the neurotransmitter acetylcholine in the brain. They are used to treat many diseases including asthma incontinence gastrointestinal cramps and muscle spasms. They can also be prescribed for depression and sleep disorders. Anticholinergic medications frequently cause confusion memory loss worsening of mental function and other cognitive effects. Elderly patients are generally more susceptible to the cognitive effects of anticholinergic medications compared to younger adults. Examples of anticholinergic medications include Trihexyphenidyl Artane Benztropine mesylate Cogentin Flavoxate Urispas Oxybutynin Ditropan Oxytrol Scopolamine Cognitive ImpairmentCognitive Impairment When MedicationsWhen Medications Are the ProblemAre the Problem By Ellen Whipple BS Pharm.D. MSF Medical Advisor 61 MSFocus Spring 2016 Ellen Whipple Pharm.D 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. Hyoscyamine Levsinex Tolterodine Detrol Belladonna alkaloids Fesoterodine Toviaz Solifenacin VESIcare Darifenacin Enablex Propantheline Pro-Banthine Any Medication That Crosses the Blood-Brain Barrier Any medication that crosses the blood-brain barrier has the potential to decrease cognition. Compared to young people elderly people are more likely to develop cognitive impairment associated with medications. Psychoactive drugs antidepressants and anticonvulsants can cause acute states of confusion. In addition nonpsychoactive drugs such as histamine H2 receptor antagonists acid reducers cardiac medications and antibiotics may cause acute and chronic cognitive impairments. It is important to note that these medications do not cause cognitive impairment in all persons. There can be tremendous differences between patients. Generally those susceptible to cognitive impairment with one medication are more likely to experience it with other medications. Advice from the Pharmacist Those experiencing cognition challenges should be encouraged to speak with their pharmacists. In many cases medication regimens can be tweaked to minimize cognitive problems. In other cases medications can be administered at times of the day to minimize cognitive issues e.g. before bedtime. Pharmacists may also be able to simplify treatment regimens so that confusion is avoided. This can be accomplished by suggesting medications that can be given once per day rather than multiple times per day suggesting medications that can be given less frequently and suggesting medications that can be used to treat more than one symptomatic problem. Those individuals who are experiencing cognitive impairment or patients taking multiple medications multiple times per day should consider having medications blister packed or use one of the weekly devices to dispense medications. There are also apps available on Google and at the Apple Store that remind you when to take medications. 62MSFocus Spring 2016 Study Suggests New B Cell Role in MS A new study points a finger at a subset of B cells the GM-CSF-producing B cells as a key contributor in the inflammatory immune cell responses in multiple sclerosis. The results offer new insights into the role of B cells and their interaction with other immune cells in MS. The authors led by Dr. Amit Bar-Or at the Montreal Neurological Institute and Hospital discovered that GM-CSF- producing B cells were more frequent and more prone to activation in MS patients. This subset of B cells activated inflammatory responses of myeloid cells of the immune system. They also found that after B cell depletion therapy the myeloid cells became much less inflammatory. This suggests that BCDT may work by lowering the number of GM-CSF-producing B cells limiting both myeloid cell and T cell contribution to new disease activity. According to Bar-Or The study is significant in discovering a new way by which B cells can contribute to abnormal immune responses in MS which reinforces the rationale for the use of B cell depletion therapy. Furthermore by better identifying the particular subset of B cells responsible for new disease activity we can look forward to more selectively targeting the bad B cells while leaving good B cells intact. This is important because B cells normally play key roles in our immune system so more selective therapies offer the prospect of decreasing the risk of impairing the patients immune system in the long run. The findings were published in the journal Science Translational Medicine. Dr. Thrower Our understanding of the immune system and how it goes awry in conditions like MS continues to grow. Two of the major cell lines of the human immune system are T cells and B cells. In the past much of the focus on MS management has been on the T cells. Clearly B cells play a role as well. The timing of this renewed interest in the role of B cells is perfect given the likely approval of ocrelizumab in the future. It should be noted that the human immune system is complex and many components have multiple functions. While we typically think of B cells as mainly producing antibodies they also serve as antigen presenting cells to the T cells. So if a therapy like ocrelizumab targets B cell function does it also indirectly affect T cell function Adding to the complexity is the variation in how one individuals immune system works versus anothers. Research has suggested The MS News column includes analysis from Ben Thrower M.D. MSF Senior Medical Advisor. Dr. Thrower draws from the top MS news stories of the quarter explains what the news means to you the person with MS. MS NEWS and What It Means to You 63 MSFocus Spring 2016 that MS in one person may result more from T cell dysfunction while in others it may result from B cell dysfunction and on others still a combination of both. Understanding this complexity and variability will hopefully lead to more and better therapies and customized therapies based upon your unique immune profile. Study Estriol Helps Reduce Relapses Protects Brain in Women with MS Taking the pregnancy hormone estriol along with conventional medications helped patients with relapsing-remitting multiple sclerosis avoid relapses according to results of a Phase II randomized placebo-controlled study led by UCLA researchers. The studys lead author Dr. Rhonda Voskuhlprofessor in the UCLA Department of Neurology and director of UCLAs Multiple Sclerosis Program and her team discovered that estriol reduces the ability of immune cells to attack the brain while also making brain cells more resistant to damage if any immune cells do make it through. They also showed that estriol treatment improved cognition and prevented atrophy of the cognitive region of the brain. It seems that during pregnancy estriol can both suppress the immune system and protect the brain. In 2002 Voskuhl completed the pilot studyin which 10 nonpregnant women with MS were given estriol yielding a greater than 70 percent drop in inflammatory lesions in the brain within only six months of treatment. In the Phase II study researchers enrolled 164 female patients with 83 allocated to the estriol group and 81 to the placebo group. Both groups were also treated with Copaxone 20 mg subcutaneously. The team found that the patients taking estriol had a third to a half as many relapses compared to those taking the placebo with this improvement occurring over and above that provided by their conventional treatment. In addition when estriol levels were the highest there was improved cognitive function and less atrophy of the brain area related to cognition. The treatment was well tolerated during the two years the volunteers took estriol and the only significant side effect was irregular menstruation. Voskuhl hopes to see a Phase III trial conducted to replicate these findings. The study was published in Lancet Neurology. Dr. Thrower It has long been noted that there is a hormonal relationship in MS. Women are diagnosed with MS three times more frequently than men. MS relapses frequently stop during pregnancy especially during the second and third trimesters. Relapses become more common during the three to six months following pregnancy. Estriol seems to be at least part of the explanation for the protective effect of pregnancy in MS. Estriol is an estrogen that seems to be at its highest levels during pregnancy and should not be confused with estradiol the estrogen typically used in oral contraceptives or in hormone replacement. Dr. Voskuhl has focused much of her MS research career on confirming the protective effects of estriol determining the long-term safety and hopefully giving us another tool in the fight against MS. Vitamin D Receptors May be Key to Remyelination A new study suggests vitamin D might affect multiple sclerosis disease progression by controlling myelin sheath regeneration. 64MSFocus Spring 2016 The authors suggest drugs that activate vitamin D receptors might be able to enhance remyelination in MS patients. A nuclear receptor protein called retinoid X receptor gamma is known to promote differentiation in oligodendrocyte precursor cells and remyelination. Because these receptors function in pairs researchers led by Robin Franklin at the University of Cambridge UK set out to identify RXR gammas binding partners and investigate their possible role in remyelination. RXR gamma bound to several receptors including vitamin D receptors in oligo- dendrocyte precursor cells and mature oligodendrocytes. Inhibiting vitamin D receptors impaired oligodendrocyte precursor cell differentiation and reduced the cells ability to remyelinate axons. In contrast vitamin D which binds and activates vitamin D receptors boosted oligo- dendrocyte precursor cell differentiation. The findings were published in the Journal of Cell Biology. Dr. Thrower Where vitamin D was once just thought of as something that helped promote strong bones its role in the immune system is becoming increasingly apparent. What do we know so far 1 The majority of people with MS have low serum vitamin D levels. 2 Low vitamin D levels are associated with a higher risk of developing MS and may be associated with a more severe course of MS. 3 Correction of low vitamin D levels seems to be associated with fewer relapses and new lesions on MRI. 4 Many of the genes associated with MS play a role in vitamin D metabolism. In our center we routinely check 25- hydroxy vitamin D levels. Our goal is to get those levels up to 50 to 70. Supplemental vitamin D doses vary greatly and it must be kept in mind that excessive vitamin D has health risks including kidney stones. Many of our patients take an over-the-counter vitamin D3 50000 unit dose typically once weekly. The need for regular blood monitoring at these higher doses cannot be overstated. Research has shown that optimal vitamin D doses are associated with higher numbers of T-regulatory cells sort of like the traffic police of the immune system. This recent research suggests that vitamin D may play a role in remyelination as well very exciting. Study Suggests Possible Inside-out Origin for MS A new study suggests an inside-out theory of multiple sclerosis in which the disease may be triggered by the death of brain cells that make the insulation around nerve fibers according to a new study from Northwestern Medicine and the University of Chicago researchers. Creating a mouse-model of progressive MS scientists also used a specially developed nanoparticle that prevented MS even after the death of those brain cells. The new study shows the possibility that MS can begin from the inside out in which damage to oligodendrocytes in the central nervous system can trigger an immune response directly.Oligodendrocytes can possibly be destroyed by developmental abnormalities viruses bacterial toxins or environmental pollutants. Oligodendrocytes are responsible for the maintenance of myelin. If they die the myelin sheath falls apart.The death of these cells can activate 65 MSFocus Spring 2016 the autoimmune response against myelin which is the main feature of MS. The inside-out hypothesis suggests that when myelin falls apart the immune system interprets the products of its degradation as foreign bodies or antigens erroneously viewing them as invaders and beginning a full-scale attack on myelin initiating MS. Protecting oligodendrocytes in susceptible individuals might help delay or prevent MS from initiating. Its likely that therapeutic strategies that intervene early in the disease process will have greater impact Brian Popko the Jack Miller Professor of Neurological Disorders at the University of Chicago and one of the lead investigators in the study said. The scientists also developed the first mouse model of the progressive form of the autoimmune disease which will enable the testing of new drugs against progressive MS. In the study nanoparticles creating tolerance to the myelin antigen were administered and prevented progressive MS from developing. The nanoparticles are being developed for clinical trials that could lead to new treatments without the side effects of current therapies in adults. The study was published in Nature Neuroscience. Dr. Thrower It has long been suspected that there is lots of variation under the umbrella of MS. This means not only variation in how MS presents and progresses but even variation in how it comes to exist and how the immune system goes off the rails. Earlier we discussed the role of B cells and T cells and how that may vary from person to person.Another interesting line of argument is about which comes first damage to the myelin or damage to the underlying axon nerve fiber. Prior to 1998 there really was not much thought that MS did anything more than damage the myelin that insulates the axon. Since that time we know that the axon can be damaged as well and that this axonal damage may be the underlying cause for permanent disability. Traditionally we have thought that damage to the myelin leads to secondary damage to the axon. Studies such as this one from the University of Chicago ask What if we have the order backwards What if the real initial event is something going wrong with the axon and that leads to a break- down of myelin This myelin breakdown may then initiate an immune response leading to further damage. If this situation is true it may be true only for some people with MS and not all. If it is true it could also mean that we need to take a different approach to stop progression. T-Shirts Sweatshirts Bears Cooling Items Jewelry Orange Ribbon Awareness Items Car Magnets and so much more. See our online catalog at 920 238-5138 A portion of all proceeds goes to the MSF 66MSFocus Spring 2016 Q.Q. Are autoimmune diseases like multiple sclerosis hereditary A.A. Autoimmune diseases tend to cluster in families.For exampleone family member may have autoimmune hepatitis another celiac disease and another rheumatoid arthritis. Current research points to a genetic component in autoimmune diseases and an understanding that what is inherited is not a specific gene but several genes which increase risk. Q.Q. Is multiple sclerosis hereditary A.A. While MS is not believed to be a hereditary disease having a family history of MS particularly in a parent or sibling does make a person more likely to develop it. In a family in which one parent has MS the risk that their children will develop the condition is estimated to be between two and five percent. Studies haveshownthatthereisahigherprevalence of certain genes in areas where MS seems to cluster as well as in some families where there is more than one person with MS. It is speculated that MS develops because a person is born with a genetic tendency to react when exposed to some environmental agent that triggers an autoimmune response. Q.Q. Is multiple sclerosis caused by an infection A.A. Some data suggest that a common virus or other infectious agent may play a role in the cause of MS. Whether it is a persistent viral infection or an immune reaction caused by a temporary viral infection in the central nervous system or elsewhere in the body is not yet known. Environmental studies suggest that some factor probably infectious must be encountered before the age of 15 in order for MS to develop later in life. Several viruses and bacteria including Epstein- Barr Chlamydia pneumonia measles canine distemper and human herpes virus-6 have been studied to determine if they may trigger MS. Q.Q. What is radiologically isolated syndrome in multiple sclerosis A.A. Researchers who followed people whose brains showed evidence of multiple sclerosis during magnetic resonance imaging MRIs taken for other reasons such as migraines or head trauma found that nearly a third went on to develop MS during the study period even though they showed no signs of the condition before the The Questions and Answers column features questions that have been answered by the MSF for Sharecare a company dedicated to providing the best health and wellness information online. Visit the MSFs page on at httpwww.sharecare.comgroupmultiple-sclerosis-foundation. 67 MSFocus Spring 2016 scans. The condition has been dubbed radiologically isolated syndrome. The studys author said RIS could be a precursor to MS but that more research is needed. The study was small looking at just 44 people. It found that after MRIs revealed evidence of abnormalities similar to those seen in MS 30 percent of the people studied went on to develop outward MS symptoms on average 5.4 years after the initial scan. Another 29 percent of people studied continued to show brain abnormalities but still didnt have any MS symptoms years later. Q.Q. How can being in poor health affect my multiple sclerosis diagnosis A.A. Recent research sponsored by the Consortium of MS Centers National Institutes of Health and other government agencies showed being in poor health complicated getting an MS diagnosis. It found that people who had pre-existing health problems such as mental illness or obesity experienced a delay of anywhere from one to 10 years in being diagnosed with MS. The study which looked at the medical records of 8983 people found the more medical problems a person had the more progressed their MS was at the time of diagnosis. Q.Q. Who should be on my healthcare team if I have multiple sclerosis A.A. In addition to the medical experts who monitor your multiple sclerosis it is important to assemble a team to treat the total you a primary care physician dentist eye doctor and a gynecologist for women make up the foundation of preventive health care. You may also see someone for mental health or consult with specialists aside from your neurologist. Questions can be also be emailed to or mailed to MSFocus 6520 North Andrews Avenue Fort Lauderdale FL 33309. 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 Change Service Requested National Headquarters 6520 North Andrews Avenue Fort Lauderdale Florida 33309-2132 Considering Organizing a Local Fundraiser Team MSF Friends Family Co-Workers and You A Winning Combination for Success Join community members across the country dedicated to raising much needed funds for expanding MSFs programs and services through local events. Share your ideas whether large or small. Well also show you what has successfully worked for others. Help make a difference in peoples lives and have fun doing it. Contact Samantha Molinero Corporate and Community Marketing Coordinator at 800-225-6495 or email