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Publications Manager Terry Schenker Editorial Coordinator Christopher Paine Editorial Committee Kasey Minnis Natalie Blake Alissa Ayden Hildy Berger Marianly H. Primmer Jay Hass Contributing Writers Patty Bobryk MHSPTMSCSATP Erika Bolin Emily Cade M.S.CCM CRCCLCP Gay Falkowski Joanne Fortunato BSMA Tim Surkovich Ben Thrower M.D. Marilyn Murray Willison Ellen Whipple BSPharm.D. TALK BACKTALK BACK We Welcome Topic Suggestions for Future Issues. Your comments about each issue are important to us. Email comments to editormsfocus.org or write to Editor MSFocus 6520 N. Andrews Avenue Fort Lauderdale FL 33309 Boost your MS IQ with MSFocusmagazine.org A World of MS Information in Your Pocket MSFocusRadio.org Listen on your PC or mobile device Available 247 MSFocus is published quarterly in enlarged type for the benefit of our readers. Audio versions of featured articles are available for listening or download on www.msfocus.org click On Demand Audio. Back issues are available online at www.msfocus.org. MSFocus is a free publication for individuals with MS their families and others interested in MS. Statement of Purpose The purpose of the Multiple Sclerosis Foundations publications is to empower those affected by MS with the information necessary to make the most complete and educated decisions concerning their healthcare. We do not advocate or endorse any specific treatments healing modalities or practitioners. The material presented in this publication is for informational purposes only. For specific advice consult a healthcare professional. MSF does believe that each person has the right to choose the treatments they feel are best and therefore acts as a source of information providing referrals to local resources and partnership in problem solving. FEATURES Take the Daze Out of Holidays 6 Making Your Cold Sensitivities Manageable 10 Winter Weather Coping with the Challenges 17 Finding Your Holiday Cheer When Youre on Your Own 19 Homecare Assistance Grant Program 22 Caregivers Receive Praise Thanks and a Special Night Out 28 Gifts That Give Your Guide to Holiday Giving 32 12 Resources for Planning an Accessible Vacation 45 CONTINUING TOPICS As We See It 4 MSF Mailbox 5 Uncle Sams Helping Hand 31 Facebook Feedback 37 Voices How to Redefine the Real You 38 Support Group Spotlight 40 From the Library 41 PS Whats New 42 MSF on the Road 48 Regional Events 49 MS Tech 101 52 Men MS 54 Updates by the Pharmacist 56 MS News 59 Questions Answers 62 MSFocus Fall 2015 4 This past summer marked a noteworthy milestone the 25th anniversary of the Americans with Disabilities Act. This historic civil rights legislation was only signed into law in 1990. To those affected by chronic diseases like MS or numerous other disabilities regardless of whether permanent or temporary extolling the positive effect of the ADA is like preaching to the choir. Nonetheless the fact remains this law opened doors to accessibility and greater integration into society for a significant segment of our population. Today it affects many aspects of living such as home accommodations travel technology education and employment opportunities just to name a few. The long process to make the ADA a law of the land was fraught with controversy and confrontation. On one side were various lobbyists representing the interests of powerful business groups intent on either watering down the bill or impeding its passage. Opposing them were numerous advocacy groups representing persons of various disabilities. The focus of their attention was the U.S. House of Representatives where a number of representatives would have privately preferred to see the issue simply fade away into oblivion. Considerable praise needs to be given to those advocacy groups. When the bills passage was not assured they organized various rallies and in an emotionally stirring moment a number of activists left their wheelchairs and literally crawled up the steps of the Capitol. There was considerable media attention as you can well imagine and not too long thereafter the House passed the bill. It is said there were 3000 persons in attendance at the White House signing ceremony. Fast forward to the present the ADA is a model legislation that has been embraced by numerous countries worldwide. In the years since its passage there were attempts to scale back the law as well as others to expand it. One can only specu- late what the prognosis would be if we were reliant upon todays Congress to pass a bill such as this. A good indicator might be the Senates refusal to pass the UN Convention on the Rights of Persons with Disabilities an international document that combines human rights law with principles of the ADA. One thing is certain the MSF proudly stands with other advocacy groups to help promote opportunity and accessibility for all persons with disabilities in keeping with the spirit of the ADA. Jules Kuperberg Alan R. Segaloff Co-Executive Director Co-Executive Director Happy Anniversary ADAHappy Anniversary ADA Yours is the MS magazine I look forward to receiving informative articles. I am a 75-year-old MS dinosaur legal diagnosis in 2000 but I have had MS for 40 years. I was told I had ataxia or every other diagnosis until the MRI was invented. If MS sexuality was known 40 years ago Id still be married as my ex-husband took my pain and lack of interest as a personal rejection. Because of the above I was dubbed The Iceberg. When I finally became pregnant I had four previous miscarrages doctors told me Disabled people dont have children. Now I am 75 and I am looking forward to becoming a great-grandmother from the offspring of the child doctors told me not to have. A P.S. to todays MS parents Keep the faith and pray a lot. Dont give up. I had four miscarriages but miracles still happen. Norma Poy Tucson Ariz. Thank you so much for helping me with my medical supplies. This will give peace of mind for at least one year. The MSFocus is a great help to many people. I will try to help as much as I can. I tell everyone about you and how you help people with MS. Ruth Gallagher Southwick Mass. It was a year ago June 2014 that you sent me the cooling package. I forgot to send you a thank you note so I am sending one now. My update is that last summer was a rough one. Once I got the cooling package it helped me tremendously. My mother-in-law saw how bad we had been doing and surprised us with a window air conditioner. So between my cooling package and sitting in front of the window air conditioner I survived last summer. This summer I have already used my cooling things for the days it was 114- 116 degrees and for anything over 102 degrees I sometimes have to get every- thing ready. I also carry it in my car when leaving the house just in case. Thank you very much for giving me this comfort during this hot season I greatly appreciate it and so does my husband who takes care of me. Thank you Susan Monroe-McCreery Red Bluff Calif. I just want to say thank you to the MSF for providing so many things as giveaways for the health fair coming up I am so lucky to be a part of such a wonderful group Shanyn Sisnroy Krieger Manzanola Colo. 5 MSFocus Fall 2015 If you have any comments or questions for the MSF they can be emailed to editormsfocus.org or written to Editor MSFocus 6520 N. Andrews Ave. Ft. Lauderdale FL 33309 6MSFocus Fall 2015 By Erika Bolin and Alissa Ayden Its the most wonderful time of the year the old song proclaims. But for many people with multiple sclerosis the holidays may be one of the most stressful.Purchasing presents and organizing holiday get- togethers is not necessarily easy for anyone. But when you consider the fatigue and other symptoms people with MS face and the medical expenses involved in managing a chronic disease the period from Thanksgiving to New Years Day can be an added source of stress that can make living with MS more difficult. However many people with MS have found tricks that help them handle the stress from the holiday season and ways to infuse fun into the festivities. MSFs affiliated support group leaders and Ambassadors shared their tips and the MSF has collected them here for you. Apply these great suggestions to make your holidays less stressful and more wonderful. Simplifying Shopping This year defeat shopping stress. Or at least combat it from the comfort of your home. Skip the parking the traveling to and fro and the long lines. Go shopping online through reputable venues. Sales and specials abound starting in October and many include free shipping every day of the year when you meet a minimum purchase amount. Dont have time to wrap and deliver all the gifts you need to buy Having gifts shipped directly to the recipient is socially acceptable today and often allows the recipient to more easily handle returns or exchanges. Also you can cut stress into slivers if you start buying and gathering gifts as When it comes to kids gifts beware of the allure of clearance items if they are related to characters from television or movies. Childrens toy fads change as fast the movie theater marquee. This means their character adorations may have waned.Think Frozen. While ubiquitous last year this giving season those may not be the most beloved gifts. Look for sales on the latest craze or choose timeless toys that are age-appropriate if shopping clearance. The same holds true for teens the video game book or accessory that was on trend last month will be pass by Christmas. While adults may find them impersonal many teens enjoy that grown-up feeling of using a gift card or cash to make their own purchases. 7 MSFocus Fall 2015 you see them rather than setting aside a specific time to buy them all at once. If you just cant resist the Black Friday savings you can still skip the chaos at the stores.Practically all the Black Friday sales are now available online and sometimes they actually begin on Wednesday. Even many door-busters can be snagged into the online shopping cart if you are up at midnight or awake at dawn. Those low prices are a simple no-fuss PJ-perused click away If you prefer to shop locally its still wise to skip the Black Friday madness. Sure in a few cases you may pay up to 15 percent more but youre worth it as is your health and sanity Simple and Homemade Gifts But not all gifts can be found online. Phyllis Jacks of the Warner Robins MS Support Group suggested giving more meaningful gifts such as baked goods or gift cards for hugs babysitting and lunch. And sometimes its the little things and personal touches that matter most. Cindi Barrett of the North Canton and Southern Summit MS Support Group agrees I recall one year when my kids were much younger and all living at home when I picked out a specific wrapping paper for each one. I didnt put tags on the packages but Christmas morning I gave them each a card with a tree wreath or Santa cut out of their paperletting them know which packages were for them. Suzanne OConnell of the Roanoke Valley MS Support Group said of her groups holiday gatheringGroup members bring great items that they craft bake or pick up along the way and share so we add the fun of a great bonus prize last year a member made a beautiful snowman that was a hot item.At Christmas Juanita made cute little Santas with a piece of candy inside and an inspiring message. These things make us feel more connected more like family and when its a homemade gift we are also learning more about each other and sharing a piece of ourselves. Now Youre Cooking If you are involved with hosting or cooking Thanksgiving or any other upcoming festive meal for your relatives learn to embrace the power of saying no and delegation. Be sure to ask for help and let others know when you get tired. Just remember as Pam Secrist of the Valley MS Support Group points out Never take on more than you can handle there is always someone to help. Break down tasks into doable steps delegate what you can and dont try to be perfect only God is. When breaking down tasks lists are a big help. Make many lists needed ingredients shopping seating table- setting needs how many per person items a timed schedule 1 p.m. appetizers out 1230 have table set 130 dinner etc. and so on. Then divide those lists among as many helpers as you can. If you simply must be the head of the feast shop on Tuesdays or Thursdays when grocery stores are least busy and make and freeze what you can ahead of time. Try to make sure you have every- thing you need ahead of time the night before a holiday the store can be a mad- house. If you find you forgot one item ask a guest to stop on the way if possible. Make your mantra It is good enough. If something is not as pretty upon a table as youd like call it rustic. Your Food Network-viewing family members or friends will chuckle. Haphazardly- plated food tastes just as good. Another practical tip is to buy some prepared foods to cut down on baking or cooking. Do you really need to spend hours baking holiday cookies or would your family be happy with a selection of goodies from the bakery If your family just loves your fresh- baked treats try this suggestion from MSF Ambassador Jessica Petroff. Im no longer able to do the extravagant candy baking and fudge-making I used to do but will ask family members to put their orders in early for one thing and I will try my best to provide that special treat. Now that my fifteen-year-old daughter is interested in baking she helps out a great deal and it is so much easier to get that special treat made. On the plus side Im teaching her and we get to spend that special time together. If you have a big bustlingunderstanding family try a potluck holiday. Ask every attendee that is local to bring a dish big enough to share. Coordinate or assign a coordinator to manage who brings what so there are not three turkeys four green bean dishes and no gravy. Youll need the table set but ask everyone to leave with their item and to clear and wash their own plates. For Susie Silver of the North Area MS Social Group it all comes down to three words Keep it simple Establish early on with family and friends what your limits are. Learn to say no and speak up. And remember you dont have to be the one hosting all the time so consider having your holiday event at a relatives house. Ordering out or eating dinner at a restaurant for a holiday are also options that may help reduce holiday stress. 8MSFocus Fall 2015 Party Time Whether its at home or at a support group meeting gift games are a common and popular way to infuse fun into a holiday event. Many including Sandra Novak of the Northwest Arkansas MS Support Group advocate white elephant swaps sometimes called Dirty Santa where you can take a gift away. Anonymous gift exchanges sometimes called Secret Santa can be fun and keep costs low for all the family or support group members involved since each person is only buying for one other. Holiday parties may also include fun and funny games sing-alongs along with dinner and fellowship.We decorated a tree then sent it home with a member that did not have one lives alone and that was real special when she realized it was going to be hers to take to her little apartment that she otherwise was not going to bother with decorating said Suzanne OConnell. Remember that handling the pressures of the holidays may mean choosing some but not all events. Make the most of the holidays but dont overdo it. These are just suggestions. Create your own holiday traditions. An understanding family will jump in. An unsuspecting family will think youve switched things up and theyll adapt. Make you and your needs the focus. Starting this season take your holidays back. Embrace and change the way you all gather and share and you can truly make the holiday season the most wonderful time of the year. 9 MSFocus Fall 2015 When they think about the effects of temperature on their symptoms of multiple sclerosis most people think about heat. Heat sensitivity is very common in MS. In fact more than 60 to 80 percent of individuals living with MS will have ill effects from the heat. Heat can cause an increase in any of the symptoms you are currently experiencing from your MS or bring new symptoms to the surface. It can even make you feel as if you are having an exacerbation. While heat does not cause an exacerbation it can cause something called a pseudo-exacerbation a temporary worsening of symptoms with- out an increase in disease activity. As a result you can feel weaker have more sensory symptoms feel more fatigued or have changes in your vision all of which can significantly affect how you function. The reason behind this phenomenon lies in the ability of a nerve axon to transmit an impulse from the brain to the periphery. This transmission is negatively affected by the loss of myelin in the brain and spinal cord.Nerve impulses are slowed or lost when myelin is destroyed in MS. Nerve impulses are best transmitted at our normal body temperature usually around 98.6 degrees Fahrenheit.When the system is heated up whether because of the temperature of the air or by internal means when we exercise or have an infection the impulses are slowed depleted or blocked causing further difficulty in the messages getting to the appropriate destination. Discussed much less frequently is the relationship of cold temperatures and their effect on MS symptoms.This phenomenon is not as common as heat sensitivity but it can be equally as influential. According to one source 10 percent of individuals with MS reported a deterioration of their symptoms when exposed to cold temperatures. Many people report that their spasticity abnormal muscle stiffness increases in the cold and others report that their sensory symptoms like numbness tingling or the MS hug worsen. Little is Known Potentially any MS symptom can worsen in the cold and as with heat any change in your symptom profile can have a significant effect on your functioning. We dont know the exact mechanism of why this happens but we do know that when a nerve axon is cooled down the impulses along that nerve are slowed. In a neurological system that already has transmission problems this cooling may cause the impulses to reach a threshold where they are further impaired or blocked. As with heat sensitivity these symptoms are temporary and will resolve when the system returns to its usual temperature. 10MSFocus Fall 2015 By Patty Bobryk MHSPTMSCSATP Unfortunately there is little research in the area of cold sensitivity in MS. In one study performed at the University of Florida body temperatures were lowered by placing MS patients in a cold water bath 75.2 degrees Fahrenheit for 20 minutes. The results showed that spasticity in these individuals did increase. Another interesting study was done comparing individuals with MS performing a physical therapy program in a warm climate Spain versus a cold climate Norway. Individuals who exercised in a warm climate had increased walking distance and reported less exertion after walking as compared to individuals who worked out in the colder climate. Individuals in this study did not have a history of heat intolerance. Some individuals living with MS may have problems regulating their own body temperature because of impairments in the neural control of the autonomic nervous system. The autonomic nervous system is the part of our nervous system that controls all those functions that we dont have to think about our heart rate our blood pressure our sweating response and our body temperature. It has been documented that blood pressure and heart rate are not always reliable measures for monitoring exercise response in some individuals who have been diagnosed with MS for a long time or have many impairments. Additionally the sweat response can be abnormal in 40 to 60 percent of persons living with MS. Our sweat response is one way our bodies try to keep us cool. Temperature regulation is another area that can be affected. You may run a lower normal body temperature or may feel cold or hot more quickly than others. Being aware that your body may not have the same responses to heat or cold it previously did or that your response is different than others exposed to the same conditions is important to effectively manage your symptoms. Symptom Management Tips Although we do not know all the science behind it cold sensitivity in MS does exist. If you are cold sensitive it is important to limit your exposure to cold or plan appropriately. If you are subjected to the cold here are some tips to keep your body from experiencing the negative effects Get moving Moving your body generates internal body heat and that can help minimize the effect of the cold. Even sitting and doing arm exercises can start to heat up your bodys furnace and keep symptoms at bay. Drink a warm drink or eat a hot meal. This too can warm your body from the inside out. Plan for colder temperatures by dressing appropriately. Layering clothes is a great strategy because if your temperature increases you can easily remove layers to be comfortable. You can purchase hand warmers or sock warmers if your extremities are cold sensitive. A word of caution If you are using heating pads or getting close to a heat source and you have problems with your sensation then you will need to visually inspect your skin to make sure you are not causing a burn. Never fall asleep on a heating pad or use heat for a prolonged period of time. Discuss your temperature sensitivity with your healthcare professionals. They can help guide you to determine if your increased symptoms are truly from the cold or because of another 11 MSFocus Fall 2015 12MSFocus Fall 2015 medical reason such as poor circulation or a problem with your thyroid. Ruling out other conditions that may be the source of a symptom is key in your overall health management. MS may not be the cause of every symptom you experience. Adjust your homes thermostat accordingly. Keeping it too warm in your home may be equally detrimental as being too cold. Try to get some sunshine even if the temperature outdoors is cool dress appropriately. Sunshine helps boost your Vitamin D levels which are often low in individuals with MS. Low Vitamin D levels can add to the symptoms that are experienced with MS such as fatigue generalized muscle pain and weakness. It is important to be in tune with your bodys response to temperature cold or hot so you can take the necessary actions to minimize unwanted symptoms and have the best quality of life no matter what the thermometer says. Patty Bobryk is an MS-certified specialist in physical therapy and an assistive technology practitioner who works exclusively with persons with MS at the Orlando Health MS Comprehensive Care Center of Central Florida. She is the former chair of the International Organization of Multiple Sclerosis Rehabilitation Therapists and is the current Secretary for the Consortium of Multiple Sclerosis Centers. 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 Samanthamsfocus.org. 17 MSFocus Fall 2015 As autumns fiery red and gold fade into winters gray the skies grow dark and temperatures drop.While the plunging temperatures may bring relief to those who cope with heat intolerance for those with balance and gait issues spasticity bladder dysfunctionor depression associated with their MS the colder weather can present new challenges.How can you adapt First discuss any increase in symptoms with your healthcare provider. Its important to make sure that the difference in symptoms isnt just coincidentally timed to the change of season and actually indicative of a relapse or period of worsening. Also your doctor may suggest adjustments to your symptom management regimen during the cold weather months to combat certain issues. Second try these tried-and-true tips from others with MS to help you cope. Spasticity Plan trips outdoors to begin 30 90 minutes after taking your medication when it should be at peak effect. If you will not be back indoors before your next dose make certain to take it with you and take it on time. If you are running errands or otherwise going in and out of the cold take your time indoors. Move at a relaxed pace and allow your body to fully warm up before going back outside. Add an extra layer of warmth to the affected muscles. For example if you have spasticity in your lower body you might benefit from wearing an added layer on your legs long underwear or leggings even if its only cold enough for light layers on top. Your spasticity might be acting up if the cold is making you less active. Find ways to exercise or at least gently stretch your muscles indoors. Balance Gait and Mobility Be conscious of the need to lift your feet higher when walking in snowy conditions. If this is difficult for you talk to your doctor about whether exercises with ankle weights may help or other suggestions for increasing the height of your step. Always select shoes with good tread. Having the appropriate style of shoe for an outfit or occasion is not as important as getting to that occasion safely. If you use a cane walker or wheelchair make sure it is properly outfitted for the weather. Check with your medical equipment provider to learn more about specialized ice tips for canes and walkers trekking poles for snow and ice and all-weather tires for wheelchairs. Bladder Dysfunction The extra layers of clothing can create problems for those with bladder urgency. 18MSFocus Fall 2015 Practice good accident prevention. Empty your bladder before getting fully dressed for the outdoors and when running errands or attending appointments take every convenient opportunity to use the restroom. With the winter weather comes hot beverages. Coffee tea and other hot drinks can be great to warm you from the inside out but the caffeine can also contribute to bladder problems for some. Watch your caffeine intake and switch to decaf when you have consumed enough. Limiting fluid intake can be harmful. We all need sufficient fluids during the course of the day. But when you have a beverage drink it all within a few minutes. While we tend to sip hot beverages if you sip all day you will feel the need to go to the bathroom all day. If you drink your beverage in one sitting youre likely to need fewer trips to the restroom. Depression If you do not typically experience depression but find yourself consistently feeling blue during the winter months talk to your healthcare provider about seasonal affective disorder. If you do experience depression as a symptom of MS you may experience worsening with the winter season. Your doctor may suggest light therapy the same treatment used for SAD which involves the use of indoor lighting that simulates sunlight and is typically done at home. A variety of light therapy products from inexpensive to expensive are available. Decreased activity during the winter months can also aggravate depression. Exercise and social engagement can help. The winter months bring challenges but with advance planning and the help of your healthcare team you can adapt Editors Note The MSF would like to thank the members of our Facebook Group for contributing their challenges and tips to this article. Join the conversation at httpswww.facebook.comgroupsmsfocus. For information call or go to 917-993-5993 www.dropfoottherapy.com Are you frustrated that heavy foot braces are the only affordable options for foot drop Are you frustrated that you cant afford the latest in Functional Electrical Stimulation FES assistive walking device We are and so are our patients We have a solution Introducing the STEP 400... 19 MSFocus Fall 2015 When we think about the holidays visions of grand meals with friends and family gathered around the table and bustling activities are usually the first visions to come to mind. While this vision is reality for many there are others who experience less activity around the holidays. For people with chronic conditions spending the holidays alone can be a struggle but there are ways that you can make these times more enjoyable. Acknowledge how you feel It is important to acknowledge how you are feeling related to the holidays. Feelings of isolation can be difficult to handle. Acknowledging those feelings and telling yourself that it is okay to feel sad it is okay to feel disappointed will help you to move through those feelings rather than pushing them to the back burner and trying to ignoring them. It is okay to feel that way. And once you accept that what you are feeling is normal and absolutely acceptable you can begin to move forward in finding ways to change your perception of the holidays. Take people up on their offers If you are someone who lives alone or in an assistive living facility you may experience some feelings of isolation during the holiday season. Please know that there are people out there who want to spend time with you. I know that sometimes I dont take people at their word when they ask me if I would like to join in on an activity. I may feel like I would be a burden or like it is more work to have others involved. But we have to learn to trust that they mean what they say. If someone asks you to join in on a holiday dinner believe that they want you there You are worthy of love and attention and your friends and acquaintances who reach out want to spend time with you. Even if it isnt someone you know as well it is worth taking that chance stepping out of your comfort zone and making a new friend. I have learned that opportunities come full circle.While they may be helping you by reaching out at this time I can assure you there will be an opportunity for you to do the same in the future. Make time to volunteer If you are physically able consider volunteering. There are few things in life that will make you appreciate all you do have like By Emily Cade M.S.CCM CRCCLCP 20MSFocus Fall 2015 volunteering will. Reach out to your local shelter. Could they use help serving meals during the holidays What about your local nursing homes or veteran hospitals You can be sure that not everyone in those places will have a picture-perfect holiday with their family and friends and would welcome a visit from you. Again it can be scary to step outside of your comfort zone. But by volunteering you will be spending time with others who really appreciate your dedication and time. You wont be able to stifle the holiday spirit when you see the smiles you put on other peoples faces. You might be surprised at the smile you find on your own face as well. Start your own traditions If you live in assistive living you may have access to many activities that the facility hosts during the holiday but if not consider starting your own traditions. Reach out to friends in the facility to see what activities folks may be interested in Maybe a wreath-making club A menorah lighting ceremony Think outside of the box on what you would find exciting and new. If you live at home alone reach out to neighbors to inquire about activities in which they might like to participate. Would you be interested in hosting a Christmas ornament exchange at your home for neighbors Be mindful of your limits Some- times creating new and exciting traditions can take on a life of their own so be sure to set limits for yourself. Maybe you want to reach out and invite friends over for Thanksgiving but do not feel like you would be up for the whole turkey dinner soiree. Instead invite neighbors to bring a sweet treat and have a small dessert party. If you are considering volunteering make sure to choose activities that will be in line with your physical abilities. While you want to be able to give back and help others make sure to keep your health at the top of the priority list as well. While spending the holidays alone can feel isolating it is important to remember that you have the power to make the holidays a special time for yourself and others. Step out of your comfort zone and accept help from others and come up with new traditions that you can call your own. Whether volunteering at the local soup kitchen or setting up a holiday card-making social at an assistive living facility or visiting veterans at the hospital you can make a the holidays merry and bright. Emily Cade M.S. CCM CRC CLCP is the Director of Outpatient Services at Shepherd Center in Atlanta Georgia. Prior to this position Emily served as the Program Manager and previous Case Manager for the MS Institute at Shepherd Center. Emily received her masters degree in rehabilitation counseling from Mississippi State University and has spent her career working with individuals with chronic conditions such as multiple sclerosis. 22MSFocus Fall 2015 In her 15 years at the MSF one beneficiary of the Homecare Assistance Grant program stands out in particular for Sherrol Patterson Timothy Johnson a divorced man in Boca Raton Fla. in his late 40s with a request for assistance. Johnson had a high school-aged son who he had not seen in years and was graduating in another state. He needed an aide to travel by train with him to New England to attend the graduation. With the help of a local agency they found someone to travel with the man and a second person to help him attend the event and travel with Johnson to his final destination to the home of his sister in Michigan. That case has always stayed with me because it really touched me that we were able to move a person who had not been out of bed in so long. He just had no one to get him in the wheelchair and transport him around. To have someone travel with him and assist him all the way and get him there... He was touched and his son was touched Sherrol said. When she first began working as one of four caseworkers at the MSF Patterson did a little bit of everything. She is currently the associate director of the Homecare and PatientAssistance programs. When she began working for the Foundation she researched other organizations to see if they had a homecare program like the one at the MSF. At that time not even the National Multiple Sclerosis Society was paying for homecare she said. It was very unique at that timethere was no other. No one had a homecare grant program like ours. The MSF Homecare Assistance Grant Program serves as a bridge between the patient and the local resources available to meet his or her specific needs. Should resources within the patients community be unavailable direct support will be provided on a temporary basis through the program. Sherrol and three staff members currently administer the program. They fulfill about 400 requests a year and in 2014 the grant program spent 140000 to help MS patients in need. But the programs staff members do more than simply help those in need directly.The process includes a lot of phone calls which may reveal other resources to help the patient resources that they may not have known were available either through the local doctors office or through their insurer. We have to do a lot of advocacy Sherrol said. Available Services include Homecare such as personal hygiene services light housekeeping grocery shopping meal preparation and trans- portation to and from appointments can be provided for a limited time. Therapy Visits based upon individual needmay be arranged with an occupational physical or speech therapist. Through 23 MSFocus Fall 2015 education and training these therapists can help to foster independenceself-esteem and better quality of life for the person living with MS. Respite Care may be provided on a short-term basis for a scheduled period of time. Respite allows primary caregivers the opportunity to have time out to tend to themselves or other family business with the assurance that the patient is being cared for by a properly trained individual. Coming Home from the hospital can be a difficult time of transition. The MSF HomecareAssistance Grant Program offers a four-hour visit from an aide who will meet the patient at the hospital provide transportation and get the patient settled comfortably at home. One of the beneficiaries of the Homecare Assistance Grant program is Terry Blankenship of Glen AllenVa. He received physical therapy and homecare services. Im a Type A personality . . . My wife was afraid to leave me alone in the house. Im a fall risk Terry said. The physical therapist helped to stabilize his leg strength. I keep active to keep from deteriorating. Additionally a homecare aide helped prepare mealsclean house and took him to doctors visits. He noted that the aide helped keep the household maintained. And while Terry felt perfectly capable of working with the microwave he saidYou dont want me working around the stove. Sherrol said I think our program is so unique in that we care. Its memorable to me just to know that peoples lives are definitely enhanced every day. The Application Process The MSF Homecare Assistance Grant Program will send the patient or other responsible party an application by mail. Applications for the MSF Homecare Assistance Grant Program are available online at msfocus.orgHomecareGrant- Program.aspx or via postal mail. Questions will be asked regarding symptoms level of disability income family supportand assistance requirements. This information helps the Homecare Coordinator to assess the physical social emotionaland cognitive needs of the patient. Upon reviewthe Homecare Coordinator will determine what services will be provided through the MSF or if a referral to another resource is needed. For more information on the MSF Homecare Assistance Grant Program or to access these services call 888-MSFOCUS 673-6287. Thank you to the Biogen Novartis and Genentech for supporting the Homecare Assistance Grant Program. MSFocus Fall 2015 28 Each November in recognition of National Family Caregivers month we honor those special people who selflessly devote much of their time and attention to care for friends and loved ones with multiple sclerosis. For the MS Caregivers Night Out Contest we asked you to tell us in 100 words or less what makes your caregiver special and how he or she has made a difference in your life. The following care partners were chosen to receive dinner for two at a restaurant of their choice. We salute them and all caregivers who work hard every day to assist those affected with MS. A Daughters Unconditional Love Patty Ross of Dunmore Pa. feels blessed to have an incredible daughter Andrea. She has been my inspiration to always stay positive in my fight against MS. She rescued two sweet dogs and trained them to be therapy dogs. Andrea spent the majority of her life growing up in the shadow of her mothers MS. Patty said it has made Andrea a sensitive and caring individual. Andrea will be attending college in the fall to prepare her to be a counselor for those with disabilities. I believe that this horrible disease indeed brought some positive effects to our lives as well. It guided my Andrea to be the incredible young woman she is today. Inspirational Boyfriend Trina Emory of Edgewood Md. met her boyfriend Joseph McConneha on March 1 2013. Two weeks after we met I woke up and my hand felt like it was asleep. This occurred on Monday and by Thursday I had lost feeling from my shoulders down to my feet. A trip to the ER and many tests later I was diagnosed with MSTrina said.To my surprise Joe stayed with me and has been through this whole experience with me every step of the way. He has gone to doctors appointments and when I was hospitalized he never left the hospital. He never gets upset with me when I dont feel well. Trina had to stop working because of the symptoms she struggles with. Joseph has taken her and her two kids under his wing. He picks up my prescriptions and runs other errands as needed. He also helps out with my children. He is an inspiration and one of the best people I have ever known. 29 Above and Beyond Debra Kline goes above and beyond to care for Gretchen Burnett of Trinidad Texas. According to Gretchen Debra cooks when Im unable and comes and sits with me and offers love and support. She is the most unselfish and giving woman. She is a devoted Christian and devoted friend. She puts others needs before her own. She takes me to the hospital for treatments when she could be doing some- thing for herself but she chooses to sit with me talking and offering me comfort. We laugh and the treatment days go by so fast. They are not so bad as I have a wonderful friend cheering me up and by my side. Debra never asks for anything for herself. She would cherish and be so blessed to get this award. Not to mention she deserves this and to be pampered. Pastors Wife an Angel Ted Cunningham of West Frankfort Ill. and his wife Linda have been married since 1983. We have seven children and eight grandchildren. I am a pastor and she is a stay-at-home mom Ted said. She loves us all unconditionally. The vow we made about in sickness has been tested by my 2002 diagnosis of primary pro- gressive MS. She has been faithful from the days with my cane to the days in a wheelchair. She helps him transfer dress and do everything else. On top of all that Ted said She has to put up with me a terrible grouch She has given up a lot and deserves special recognition every day. Big Brother Jacqueline Jones of Brooklyn N.Y. says her brother Alex is wonderful and helps her in every way emotionally physically and mentally. Alex is my biggest supporter said Jacqueline. I have fallen and cried countless times and luckily he has been by my side. He has picked me up and given me words of encouragement. Dont let this disease defeat your spirit. You cant stay on the floor forever Jackie. He tells me it is okay I am here for you everyone goes through rough times keep your head up and smile. Caring and Attendance In 1993 Diana Journey of Highland Springs Va. was diagnosed with primary progressive MS. By 1996 she was in a wheelchair. Her husband David was her only caregiver and he is also disabled. He fed me bathed me and dressed me. I was almost bedridden Diana said. David cared for and attended to her every need often ignoring his own health problems. One time he was admitted to the hospital which left me on my own. He talked the hospital into letting me stay in his room. I slept on a cot. He took care of me while the nurses took care of him. He definitely deserves a great night out and so much more. MSFocus Fall 2015 MSFocus Fall 2015 30 Mother Knows Best Being diagnosed with MS was a hard pill to swallow for Linda Brown of Summerfield N.C. She thought her life was over. But her mother Marie was there to encourage her. Marie would tell her You can handle this. Im right here with you. Linda said her mother never lets her down.She is always looking on the sunny side of life. To her it was a problem I just had to tackle. No time for tears. I thank the Lord for a loving strong mother. She cleans fixes my hair and cooks my meals. She drives me to church takes me to the YMCA three times per week and prays for my sister and me. I hope that everyone with a problem or disease will always look on the sunny side of life. If you cant see the sun draw one or get someone to draw one for you. I just know my mom deserves something special. Still There for Her My caregiver is my husband Richard he is there for me said Debbie McIvor of Acworth Ga. He helps me with my shots. If I need help with anything like dressing or the bedpan he is there. I just had surgery and he is right there changing my bandages cleaning me and feeding me. Richard had his left leg from the knee down and his right toes amputated. Debbie said He is in wheelchair and is still there for me. He does a lot that some men would not do. Love and a Smile With Amy Walker of Hawkinsville Ga. out of work on disability her daughter Rolanda has gone above and beyond to help pay the bills. Her life is very busy as she works full time she has a mortgage to pay car payments and two children Amy said. She always finds time to be with me and even have a play date for us to go out to the movies or we will do something like going out for breakfast and then to the nail shop for a manicure and pedicure. Rolanda calls Amy every day to check in and to say a few words to make her smile.That means so much to Amy. I told her I wish I could do something special for her because she is so good at taking care of me. She always says Ma you were always a good mom to me and now it is time for me to take care of you. She always says it with a lot of love and a smile. A Good Son Yvonne Smallof PhiladelphiaPa.nominated her sonWaynewho is her caregiver. At 14 years old he youngest of her three children. Yvonne was diagnosed with MS six months after giving birth to him. Wayne does all our laundry. How many young men do their mothers underwear she said. He also helps her with her shots and he cooks meals on days when shes too fatigued. 31 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 Social Security Appeals Process If you recently applied for Social Security disability benefits or Supplemental Security Income and were denied for medical reasons you may request an appeal online and provide documents to support your appeal electronically. The Social Security Administration has an administrative appeals process headed by the Office of Disability Adjudication and Review. It is one of the largest administrative judicial systems in the world. SSA adjudicates more than half a million hearing and appeal dispositions each year. Decisions and hearings are conducted by administrative law judges. The Appeals Council considers appeals from hearing decisions and acts as the final judgement for the agency. The appeals process is handled by first requesting a hearing then locating a hearing office. A video hearing can be requested for the homebound. A plaintiff may also file for a civil action and request an unfair hearing complaint. You can have a representative such as an attorney help you when you do business with the SSA. In most situations your representative cant charge or collect a fee from you without first getting written approval from the SSA. The SSA wants to be sure that every decision made about your disability or Supplemental Security Income application is correct. The SSA carefully considers all the information in your case before they make any decisions that affect your eligibility or benefit amount. When the SSA makes a decision on your claim they will send you a letter explaining their decision. If you do not agree with the decision of the SSA you can appeal that is asking them to look at your case again. When you ask for an appeal they will look at the entire decision even those parts that were in your favor. If their decision was wrong the SSA will change it. If you need to appeal a Social Security disability decision you can now File your appeal online and upload your supporting documents File your appeal even if youre outside the United States Find a shorter appeals process online and Receive quicker decisions from the SSA. If you wish to submit an appeal online be sure to provide the necessary documents to support your appeal online. The website for appeals is ssa.govappeals. Publications about plaintiffs right to appeal their social security case why a video hearing may be advisable and electronic services for appointed representatives are available online. MSFocus Fall 2015 32MSFocus Fall 2015 The holidays are known as a time of kindness and giving. But with the hustle and bustle of the season it can be difficult to find time for helping others. Now you can complete your shopping list and help people with MS at the same time. We found the gifts that give back. Gift Vv SkiVvys are sexy waterproof leak and stain resistant panties. The underwear is made for women and it runs from extra small to plus size. The outside material is a soft cotton fabric and the inside features a darker-colored wicking fiber to pull moisture away from the body. The underwear is not only beautiful but it also helps people with MS. Vv Apparel will donate 15 percent of product sales to the MSF when the promo code 4MSF2U is used. The code also lets customers receive 10 percent off their entire purchase. The company was started by three sisters and their mom who hope to empower women. Amount 30.95 to 35.95 How to Get It Its available online at www.vvskivvys.com. Gift Sew Pretty handmade handbags and accessories. Youll see everything from an iPad caddy to a walker bag for sale. Customers can also choose their own style and colors for a custom-made purchase. The products are designed and crafted by volunteers who have MS. This is the only company where 100 percent of the net profits go to the MSF and product donations go to veterans. Sew Prettys mission is economic awareness and empowering their volunteers through life skills and work. Owner Martha Hannigan who also happens to have MS initially started Sew Pretty as a small home-based sewing and embroidery business. Martha said as the company grows she hopes to be able to hire part-time people to help meet demand giving people with MS and veterans with disabilities first consideration. Amount Wide range from 12 to 75 for custom embroidery. The median price of a purse costs about 25 to 45. How to Get It Order products at www.sewpretty-ms.com. You can pay through Paypal or call 239-219-6532 to request a call back and pay over the phone make a custom order or have questions or comments answered. Gift Shop for MSF. The MSF created its own clothing and gifts using the online retailer Zazzle. The clothing is available for men and women. Sizes run from small to 6X on some items. Most of the material is made of 100 percent cotton. Customers can By Marianly H. Primmer 33 MSFocus Fall 2015 click the customize button for different colors and styles such as a t-shirt tank top or a polo-style shirt. The items are designed by the MSF staff or sometimes in collaboration with supporters of the organization. The MSF chose to receive only 10 percent of the sales in order to keep the prices down. The Foundation also receives a referral fee for customers who use the link below to enter the site and then buy something outside of the MSF brand. Shop for MSF is also an excellent way to spread MS awareness. Amount 16.95 to 33.45 How to Get It Order online at www.zazzle.commsfocus Gift COOLSHIRT . Coolshirt uses active cooling technology and specializes in personal cooling products such as cooling vests pants shirts and blankets. The products are of such high quality that they are also used by race car drivers fire fighters athletes and surgeons. Coolshirt Systems donates a generous 15 percent of total sales from its heat intolerance products to the MSF. Coolshirt products offer optimum duration and portability for people with MS. Amount 42.95 to 532.13 How to Get It Shop online at coolshirt.commsusa Finally there is a catch-all for people who want to pay it forward. Amazon.com will give .5 percent of your eligible purchases to the MSF. You will see eligible products marked Eligible for AmazonSmile donation. Go to smile.amazon.com log in with your same Amazon account info and on your first visit select Multiple Sclerosis Foundation. You can also bookmark the page to keep it handy. There is no additional cost to you and your shopping cart wish list and registries account settings stay the same. Amazon Smile is an ideal way to give back and get a wide variety of gifts. Partner with the When you shop at AmazonSmile Amazon will donate to the MSF 37 MSFocus Fall 2015 Paige Jax Decorative paper plates and paper napkins for holiday meals at home makes clean up so much easier. Michael Allen With all the busy days of the holidays I find that on a cool winter night Ill sit on my back porch and listen to the sounds of the season.You have to have some time dedicated to yourself in season thats so much about giving to others. Kathy Marbut Organization I have always been one to love scheduling I remain doing as much as possible.I always plan way ahead of time for anything.I make a gift list card list menu and party list. If gifts are required needed I begin buying throughout the year. It saves timeenergy. In addition buying early will help with costs. At the beginning of the year and usually during the year you are able to find good clearance items. Beating fatigue is always an uphill struggle of its own. Plan plan plan Kathy Crudele I have learned shopping online has saved me an extreme amount of energy. This year I will be shopping Amazon Smile since a portion of the sales will be donated to MSF if specified so you are doubling the holiday cheer If you have Prime on Amazon shipping is usually free. Gift cards can be purchased through them for many restaurants and stores. Patti Rothmann Family and friends have been so open to potlucks knowing planning and preparing can be very fatiguing. But you have to be willing to speak up and be honest about the need for help I always received such positive feedback. And if you travel via air and have a handicap placard remember to take it with you to use in a rental car or a family members car. Marlene McDaniel I usually stay home and shop all year long to make it easier so there isnt as much stress. Jessica Lowhorn Petroff My husbands family all lives out of town and most of the time all the kids come back to their home state for Christmas. To cut down on costs knowing we have financial strains due to my medical expenses we only do a drawing for the cousins for them to buy gifts for one another with a dollar amount limit. Most of my side of the family doesnt usually exchange gifts but if we know we are going to get together we only buy for the kids and it usually is a gift card or cash. On the stress level part it can become extremely stressful especially for me. I have a hard time with large crowds noises and keeping up with conversations. At first I was embarrassed to address this with family members and friends but now I do and it has eased some of the stress. If I am feeling a bit overwhelmed overstimulated etc. I excuse myself and go to a quiet place to gather my thoughts and rest a bit so I can be more calm and rested upon returning. Facebook Feedback is your chance to share your experiences related to topics covered in the MSFocus. Like our Facebook page at www.facebook.comMultipleSclerosisFoundation and watch for our next Facebook Feedback post. Our question for this edition was How do you cope with the challenges of the holidays 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. 38MSFocus Fall 2015 How to Redefine the Real You By Marilyn Murray Willison We all have to deal with a wide variety of changes that inevitably come our way when MS becomes a part of our lives but its important to remember that there is no right or wrong way to adapt to a serious diagnosis. The truth is that each of us faces unique challenges and opportunities. Fortunately there is an endlessly available supply of one of the most essential ingredients for anyone who has MS and that as far as I am concerned must-have mental component is imagination. When I was diagnosed in 1984 I was professionally an editor at Los Angeles Time Syndicate and Id authored two nonfiction books. On a personal level I was a very active single mom who jogged with her sons played the piano and on most Saturdays competed in amateur show jumping competitions. But as my physical abilities gradually declined I had to find a way to hold onto a recognizable me regardless of what my muscles would or could no longer do. So eventually the jogging shoes and the riding boots were donated to Goodwill. I decided to forget about the physical activities that were beyond my ability and focus on a part of me that MS could not diminish my intellect. That decision prompted me to work on finding or imagining a way to stay connected to journalism and writing in general even though I could no longer effortlessly hop on a plane for a foreign assignment or type 90 words a minute the way I used to. It may take you a while to figure out a different way of tapping into what makes you the unique and special person you are. As for me I had to imagine what my restructured life would look like with uncooperative and unreliable limbs. Since then with the help of others I have even though it once would have seemed an impossibility authored four more books had a wheelchair-centered article published in Allure magazine interviewed Christopher Reeve and lectured from my wheelchair to thousands of people. The good news is that today technology can be a wonderful aid to those of us who are disabled. But my experiences during the three decades since my diagnosis have taught me that learning to a reach out to others and ask for help b learn how to imagine what you want out of life and c focus on what you have instead of what you dont are essential skills. After all we all need workable techniques to help us find a satisfying way to redefine who we are. I had to reluctantly sift out the physical aspects of being a writer that I once thought were nonnegotiable like traveling and typing and remember 39 MSFocus Fall 2015 Willisons latest two books are The Self-Empowered Woman 17 Characteristics of High Achievers and One Woman Four Decades Eight Wishes A Journalists Memoir of Challenge Change Growth. Listen to the radio interview on Sound Cloud at httpssoundcloud.comms-focus and click on Marilyn Murray Willison - Author of 1 Woman 4 Decades 8 Wishes interview. that Alleluia words can be dictated. Coping with MS for me is all about accommodating adapting and substituting. And oftentimes we need to use those three approaches in ways we could have never imagined during our prediagnosis days. But as everyone knows a good imagination which is merely a second cousin to the all-important quality of gratitude is a wonderful wonderful gift. And that truism even applies to people who dont have a clue about what it takes to live a life redefined or reimagined by MS. In Memorial Charmaine Loftis-Cothran Jan. 13 1961 Sept. 19 2015 When Charmaine Loftis-Cothran was diagnosed with MS in 1998 she went to a local Chicago-area support group looking for a role model someone a young African-American professional could get advice from on living with multiple sclerosis. When Charmaine didnt find that role model she became one. I thought if I have MS there must be others out there like me she recalled to MSFocus in 2004. She set about finding them networking in her community and writing letters to local churches. Through her efforts the African Americans Living with Multiple Sclerosis support group was born. Before long their ranks grew to upwards of 30 members and Charmaine sought affiliation with the MSF to provide resources for the growing group.For more than ten years Charmaine led the AALMS group arranging bimonthly speakers and numerous parties picnics and fun outings with resources and assistance from the MSF. The members have become like a family she said in 2010. We make it a point not to judge each other. We support each other and help one another on this MS journey. Despite her busy personal and professional schedule Charmaine looked for still more ways to become involved and help others. In 2005 she became a Deaconess of the United Methodist Church serving on the Ministerial Staff for Maple Park United Methodist Church and the Maple Park neighborhood. In 2012 she applied and was accepted to the MSFs Ambassador Program serving as a representative for MSF at many events in her area and working to raise awareness of MS in her community. She actively assisted with the MSFs African-Americans with MS educational program series in her region. Charmaine also attended the MSF Cruise for a Cause several times as both a guest and a speaker on the support group program. Charmaines passion for helping others stemmed from a strong Christian faith and a kind heart. Director of Program Services Natalie Blake best summed up the feeling of the MSF staff at the news of Charmaines passing from a sudden heart attack. Noting Charmaines dedication to improving the quality of life for people with MS in her community she added Charmaine went above and beyond in everything she did She was a friend. 40MSFocus Fall 2015 By Alissa Ayden The Multiple Sclerosis Foundation Independent Support Group Network is growing Please welcome the following newly-affiliated groups Chattahoochee Valley MS Support Group Columbus Ga. RI Strollers MS Support Group Cranston R.I. Peninsula MS Support Group Newport News Va. Tippah-Benton MS Support Group Ripley Miss. 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. With the holidays approaching the topic of support is strongly on my mind. Having sources of comfort assistance and encouragement in our lives is especially important during hectic or special times. I recently presented a teleconference called Building Your MS Support Network that aimed to empower people with the information and resources necessary to create a stronger support system in their lives. Most of us could benefit from building a stronger network of people upon which we can rely for emotional and practical support and assistance when we need it. I encourage you to take some time before the busyness of the holidays sets in to practice self-care by working toward bolstering your current support network. You can access my Building Your MS Support Network teleconference on demand by going to httpssoundcloud.comms-focus and clicking on it within the MSFocus Teleconferences playlist. You can also email us to request a three page information and resource sheet that will provide tools to help you Conduct an inventory of your current MS support network Connect with other people with MS online and on the phone Expand your general circle of friends by connecting with other people in person Obtain support from organizations and professionals and Feel more comfortable when reaching out to friends family and acquaintances for help. As always if you are interested in applying to start or affiliate a support group please contact me at 888-MSFOCUS 673-6287 or alissamsfocus.org. 41 MSFocus Fall 2015 Review by Marianly H. Primmer Everyone has a story to tell. Ones life experiences growing up and in adulthood shape the person they become. Richard C. Snyder grew up with MS. He shares his story in Growing up with MS 45 Years and Still Thriving. The book is more than an autobiography. Snyders personal story combines science diet and spirituality with practical physical adaptations he uses to mediate his MS. The author hopes others will learn from his story. It is apparent Snyder has the heart of a teacher from the beginning. The first chapter is a brief easy-to-understand science lesson explaining multiple sclerosis. Snyder was a school teacher and also calls himself a science person throughout the book. His explanation will captivate even non-science people. The chapter devoted to the science behind MS is simply the author being true to himself. Snyder was diagnosed with multiple sclerosis while in high school in the 1960s at a time when relatively little was known about the disease. The author tells what he believes are his first few symptoms and some of his childhood experiences that may or may not have been factors in his MS. He recounts the childhood incidents in hopes of finding out if they are similar to others who also have MS. Snyders story goes through ups and downs but he has no regrets. He credits MS for taking him on a spiritual journey. Snyder teaches the reader that everyone will have challenges in life Its how you play with the cards youre dealt that makes or breaks the goodness life holds. As his disease progressed his spirituality expanded I am not letting my physical shortcomings dictate my happiness. The spiritual lessons he teaches the reader can be applied to anyone with or without a disability my happiness is an inside job. Today Snyder lives life to the fullest with some adaptations. He hopes his story will empower readers to do the same. Growing Up with MS 45 Years and Still Thriving by Richard C. Snyder To borrow this and other titles call the MSF Lending Library at 888-MSFocus 673-6287 or visit www.msfocus.org. Click on Lending Library under the Programs and Activities heading. Growing Up with MS 45 Years and Still Thriving By Richard C. Snyder 109 pp. 6.97 Show Your Support for the Visit www.zazzle.commsfocus 42MSFocus Fall 2015 Online Contest Winners The MSF held a contest to celebrate the official launch of the MSFocusmagazine.org website. The winners of our weekly drawings are Patty Ross Kalonie Lopez Tamara Botzum Dee Rob and Abeir Alquadi. They each received a MSF prize pack. Our grand prize winner was Diane Brandts and she won a 200 gift certificate forAmazon.com.Visit MSFocusmagazine.org for magazine articles as well as additional exclusive content you wont find anywhere else. Make the call to the MSFocus Radio comment line Feel like commenting on something you heard on MSFocus Radio or read in MSFocus magazine Call MSFocus Radios new comment line. Do you have questions for one of our medical experts Call us any time at 855-MSF-1515 673-1515. Make sure to leave your name and contact information along with your comment so we can reach you if we need more information. Wed love to hear from you North to Alaska From Bow to SternLivingWell with MS is the theme for the 2016 MSF Cruise for a Cause. Join us as we explore some of the most exciting and scenic areas in North America onboard Celebrity Cruise Lines Solstice while attending one of our many motivating educating and empowering programs presented by Dr. Randall Schapiro Dr. Daniel Kantor and Patricia Bobryk MHS PT MSCS ATP. Book early to assure a stateroom of choice on the 2016 MSF Cruise for a Cause a seven-night cruise departing from Seattle on May 20 2016. Educational programs are slated for May 21 25 and 26. Support group meeting will be held on May 21 with reception on May 26. For more information or to make a reservation contact Gabriela Aragon at Aragon Travel by calling 888- 408-4129 or 954-322-1030 or email gabrielaaragontravel.com. In our office Sharon Uhlara Support Group Program clerk joined the MSF this summer and performs administrative support tasks for the MSFs Support Group Program and Independent Support Group Network. Sharon holds a Bachelors degree in Criminal Justice and a certificate in court reporting. I am thrilled to have become part of the MSF family Its a great feeling knowing that I am contributing to being part of improving peoples lives with MS. ACTHAR ANOTHER WAY TO TREAT MS RELAPSES IN ADULTS ACTHAR MAY HELP SPEED RELIEF OF YOUR MS RELAPSE TALK TO YOUR DOCTOR AND LEARN MORE AT ACTHARMSRELAPSE.COMSTORIES WHERE YOU CAN HEAR PEOPLE SHARE THEIR EXPERIENCE WITH ACTHAR Christine Paul Maby and Katrina Actual Acthar patients who share their MS relapse stories USES H.P. Acthar Gel repository corticotropin injection is indicated for the treatment of acute exacerbations of multiple sclerosis in adults. Controlled clinical trials have shown Acthar to be effective in speeding the resolution of acute relapses of multiple sclerosis. However there is no evidence that it affects the ultimate outcome or natural history of the disease. IMPORTANT SAFETY INFORMATION You should not take Acthar if you have A skin condition called scleroderma Bone density loss Any infections Eye problems such as ocular herpes simplex Had recent surgery Stomach ulcers or a history of ulcers Heart problems High blood pressure Allergies to pig-derived proteins Been recently given a vaccine or are about to take one A condition where your adrenal glands produce either too much of certain hormones as with Cushings syndrome or not enough adrenal insufficiency Never inject Acthar directly into a vein and always take Acthar as prescribed by your doctor. Never stop treatment suddenly unless your doctor tells you to. Try not to miss any scheduled doctors appointments as it is important for the doctor to monitor you while taking Acthar. Acthar can cause side effects similar to those with steroid treatments. Tell your doctor if you have any of the symptoms listed here. Increased risk of infections. You may be more likely to get new infections.Also old infections may become active. Signs of infection are fever cough vomiting or diarrhea. Other signs may be flu or any open cuts or sores Adrenal gland changes. Taking Acthar long term may cause symptoms of Cushings syndrome such as upper body fat rounded moon face bruising easily or muscle weakness Increased blood pressure body salt and fluid. Your doctor may recommend changes to your diet Unpredictable response to vaccines. Talk to your doctor about which vaccines are safe to use when taking Acthar Masking other conditions. Tell your doctor if you have any infections changes in weight excessive tiredness increased thirst fast heart rate or difficulty breathing Stomach or intestinal problems. Acthar may put you at increased risk for bleeding from the stomach or getting stomach ulcers.Tell your doctor if you have any pain in the stomach area vomiting or bloody or black stools Changes in mood or behavior. You may be irritable have mood swings be depressed or have trouble sleeping Worsening of other medical conditions including diabetes Eye problems such as cataracts glaucoma or optic nerve damage Allergic reactions. Tell your doctor if you have a skin rash swelling or trouble breathing Bone density loss. Acthar may cause osteoporosis at any age Potential harm to unborn baby. Tell your doctor if you are pregnant or plan on becoming pregnant The most common side effects are similar to those of steroids.They include Fluid retention Changes in blood sugar Increased blood pressure Behavior and mood changes Changes in appetite and weight Specific side effects in children under 2 years of age include Increased risk of infections Increased blood pressure Irritability Symptoms of Cushings syndrome Cardiac hypertrophy thickening of the heart muscle Weight gain The above side effects may also be seen in adults and children over 2 years ofage. These are not all of the possible side effects of Acthar. Tell your doctor about any side effect that bothers you or that does not go away. You may report side effects to the FDA. Call 1-800-FDA-1088 or visit www.fda.govmedwatch.You may also report side effects by calling 1-800-778-7898. Please see adjacent page for Brief Summary of Acthar full Prescribing Information. H.P.Acthar Gel and Questcor are registered trademarks of Questcor Pharmaceuticals Inc. a Mallinckrodt company. 2015 Mallinckrodt. PM-01-01-1976a 615 Printed in USA Important information about H.P. Acthar Gel. Please read this summary carefully and ask your doctor about Acthar. No advertisement can provide all of the information needed to determine if a drug is right for you or take the place of careful discussions with your healthcare provider. Only your healthcare provider has the training to weigh the risks and benefits of a prescription medicine. What is the most important information I should know about H.P. Acthar Gel Acthar can cause serious side effects including 1. Increased risk of infections. Acthar affects your immune system. Therefore patients may be more likely to get new infections or inactive infections may become active. Tell your doctor right away if you have any signs of infection such as fever cough vomiting diarrhea or sign of illness or flu or any open cuts or sores. 2. Adrenal gland changes. Acthar has effects on the adrenal gland. When a patient is taking Acthar their adrenal gland may produce too much of a hormone called cortisol. This can cause symptoms of Cushings syndrome upper body fat rounded face thin skin which is more common in patients who take this medicine for a long time. When a patient stops taking Acthar after a long time the body may not produce enough cortisol on its own adrenal insufficiency. The doctor may prescribe a steroid medicine to protect the body until the adrenal gland recovers. Do not stop administering Acthar without talking to your doctor first. 3. Blood pressure changes. Blood pressure should be checked during treatment your healthcare provider may instruct you to make some dietary changes. Acthar may cause an increase in blood pressure. 4. Increased amount of water in the body increased body salts and low potassium in the blood. Acthar may cause your body to have an increased amount of body salts and water that stays in the body and may lower the amount of potassium in the blood. Your doctor may instruct you to make some dietary changes. 5. Vaccine eligibility. Patients should not receive certain vaccines during Acthar treatment. Talk to your healthcare provider about which vaccines are safe for you. 6. Undetectable conditions. Acthar may hide or mask symptoms of other conditions or diseases making it more difficult for your healthcare provider to diagnose other conditions or diseases in you during treatment. 7. Stomach bleeding or ulcers. You may have an increased risk for bleeding from the stomach or having a stomach ulcer. Report any pain in the stomach area vomiting or bloody vomit bloody or black stools excessive tiredness increased thirst difficulty breathing or increased heart rate. 8. Changes in mood or behavior. Irritability depression or trouble sleeping may occur. What is H.P. Acthar Gel Acthar is a prescription medication used to treat acute relapses or flares in adults with multiple sclerosis MS. Studies have shown H.P. Acthar Gel to be effective in speeding recovery from an MS relapse. However there is no evidence that Acthar affects the ultimate outcome or natural history of the disease. What should I tell my healthcare provider before using H.P. Acthar Gel Tell your doctor about all of your health conditions including if you have A skin condition called scleroderma Bone density loss osteoporosis Infection throughout your body Eye problems such as ocular herpes simplex Recently undergone surgery History of or a current stomach ulcer Heart problems High blood pressure Allergies to pigderived proteins Diabetes Kidney problems Thyroid problems Liver problems Neuromuscular problems Convulsions or seizures Had exposure to someone with tuberculosis TB Recently been vaccinated Tell your doctor if you are pregnant or plan on becoming pregnant. Tell your healthcare provider about these and any other health problems you may have or medicines you are taking including prescription and nonprescription medicines vitamins and herbal supplements. How is H.P. Acthar Gel given Acthar should never be given intravenously into a vein. Acthar is given as an injection into the muscle or under the skin. Do not inject it into a vein or give it by mouth. Inject Acthar exactly as your doctor tells you. Your doctor will tell you where to give the injection how much to give how often and when to give yourself the injection. Refer to the full Prescribing Information for additional information on how Acthar is given. What are the possible side effects of H.P. Acthar Gel See What is the most important information I should know about H.P. Acthar Gel Acthar can cause side effects similar to those that can happen with steroid treatments. Tell your healthcare provider right away if you have any of the symptoms listed below while taking Acthar. Not all of the following side effects have occurred with Acthar but they might be expected. Before beginning any treatment you should discuss with your healthcare provider the potential benefits and risks associated with Acthar. Acthar can cause serious side effects. Acthar may make certain other medical conditions worse such as diabetes may increase blood sugar cause eye problems such as cataracts increased pressure in the eye glaucoma and possible damage to the optic nerve and cause allergic reactions to Acthar seen as skin rash swelling of the face tongue lips or throat and trouble breathing. Acthar may affect growth and physical development after long-term use. Long-term use of Acthar may cause an increase in the size of the heart but this condition usually goes away after Acthar is stopped. Tell your doctor if you have any of the side effects listed above. What are the most common side effects of H.P. Acthar Gel The most common side effects of Acthar in infants include infections increased blood pressure irritability and changes in behavior changes in appetite and weight diarrhea and vomiting. Other adverse reactions reported in adults and children over 2 years of age included abdominal bloating anxiety asthma chest discomfort congestive heart failure dizziness shortness of breath redness of the face fluid retention flushing headache injection site pain tiredness muscle weakness nervousness rapid heart rate and lack of energy. Report side effects to your healthcare provider. The side effects listed here are not all of the side effects possible with Acthar. Ask your healthcare provider for more information. Tell your healthcare provider if there is any side effect that bothers you or that does not go away. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.govmedwatch or call 1-800FDA1088. How should I store H.P. Acthar Gel Store vials of H.P. Acthar Gel in the refrigerator between 36F to 46F 2C to 8C. Throw away any vials after the expiration date printed on the label. What are the ingredients in H.P. Acthar Gel Active ingredient Corticotropin. Inactive ingredients gelatin phenol cysteine sodium hydroxide andor acetic acid to adjust pH and water for injection. General information about H.P. Acthar Gel. Medicines are sometimes prescribed for purposes other than those listed in the Prescribing Information. Do not use H.P. Acthar Gel for a condition for which it has not been prescribed. Do not give H.P. Acthar Gel to other people even if they have the same symptoms. It may harm them. Please see the full list of warnings precautions and adverse events in the full Prescribing Information for Acthar. Discuss this information with your healthcare provider. Find out more. Ask your healthcare provider or pharmacist go to www.acthar.com or call 18007787898 to learn more about Acthar. H.P. Acthar Gel and Questcor are registered trademarks of Questcor Pharmaceuticals Inc. a Mallinckrodt company. 2015 Mallinckrodt. PM-01-01-1483 1214 Printed in USA MSFocus Fall 201545 Have you planned a vacation for this year If not is MS holding you back Sometimes limitations related to MS may keep you from going places and doing things youve dreamed of. If so youll be glad to know there are many websites organizations and resources that can provide lots of great advice and assistance in helping you plan a vacation that will accommodate your needs. Here are a dozen of them to help you on your way 1 Youll find lots of travel tips and resources at www.disabled-world.com.This website warns that accessibility is not always as advertised. In fact hotels and apartments may say on the phone that they are wheelchair accessible when in fact they are not. Many websites such as Trip Advisor offer reviews so do your best detective work to make sure youll be getting the accommodations promised. 2 The U.S. Transportation Security Administration has a helpline number designed to assist travelers with disabilities and medical conditions. Travelers may call TSA Cares toll free at 855-787-2227 prior to traveling with questions about screening policies procedures and what to expect at the security checkpoint. 3 A secure way to maintain your emergency contact information is to enroll in the Smart Traveler Enrollment Program. Your information is stored securely and enables the Department of State U.S. embassy or U.S. consulate to contact you your familyor your friends in an emergency according to your wishes. For details go to httpsstep.state.gov. 4 The Opening Door Inc. is an organization dedicated to promoting independence for persons with disabilities through travel. Find guides to the United States Asia Australia Canada Caribbean Europe and the Middle East. Each guide provides detailed information so that users have to do minimum preplanning. For more info go to www.travelguides.orgaccessguides.html 5 The book 101 Accessible Vacations by Candy B. Harrington is organized so readers can search for a vacation based on their specific interests or travel styles. Unlike other guidebooks that are organized geographically 101 Accessible Vacations includes sections ranging from Road Trips andThe Great Outdoors to Historic Haunts and Cruising. The A Place to Rest Your Head section features some fun lodging choices while the Active Holidays section includes choices for people who like specific recreational activities such as skiing sailing or scuba. 6 When deciding on your destination consider visiting countries that have signed and ratified the United Nations Convention on the Rights of Persons With Disabilities. Find the list at www.un.orgdisabilities. 7 The Society for Accessible Travel and Hospitality is a nonprofit membership organization providing a database of companies and resources that assist people By Gay Falkowski MSFocus Fall 2015 46 with disabilities in all facets of travel such as scooter rentals tour operators and suggested reading. Contact the society by calling 212-447-7284 or online at www.sath.org. 8 American Society of Travel Agents allows you to search for travel agents by specialtyincluding disability and accessible travel. Contact the society by calling 800-275-2782 or online at www.asta.org. 9 Accessible Europe is a group of travel agents headquartered in Italy who specialize in accessible tourism. You can reach them by calling overseas at 011-39-011-30-1888 or check them out online at www.accessibleurope.com. 10 Accessible Journeys caters to slow walkers and those in wheelchairs offering cruises tours and independent trips. Destinations include Africa Asia and Europe. You can contact Accessible Journeys at 800-846-4537 or visit the website at www.disabilitytravel.com. 11 The National Center on Health Physical Activity and Disability is hosted by the University of Alabama. The center has recreation resources on outdoor and travel activities throughout the country and abroad. You can call 800-900-8086 or learn more at www.ncpad.org. 12 Road Scholar educational adventures are created by Elderhostel a nonprofit organization that has promoted lifelong learning since 1975. Road Scholar offers trips at various levels of activity including easy which requires minimal walking and limited stairs. Contact them at 800- 454-5768 or www.roadscholar.org. Find more of Gay Falkowskis stories on the web at MSFocusmagazine.org. LIGHTWEIGHT DISCREET COMFORTABLE POLARProducts 1.800.763.8423 www.polarproducts.com PolarProducts PolarProducts POLAR1.800.763.8423 Fashionably Cool Polar Products is a leading worldwide manufacturer of body cooling systems for MS and a proud supplier for the MSF Cooling Program Polars Fashion Cooling Vests for Men and Women are available in Khaki or Black in sizes Small - XXXL with your choice of Kool Max Packs or Cool58 Packs. Decide which is best for you at www.polarproducts.com. Polars Fashion Cooling Vests for Men and Women I live in the desert. Anyone with MS can relate that each summer month gets more difficult to manage. So I finally broke down and decided to get a Polar fashion cooling vest... Boy am I glad I did I was pleasantly surprised how discreet the cooling inserts were and how much better I felt afterward. Trust me - it wont cramp your style Dont put it off. Youll love it. - Terri in CA since 1984 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. 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OQ POMIT OUR CELY OUR CEWERS YO OUWER YLLS PO ELLS. .YUR BOD 48MSFocus Fall 2015 MEEMEE IITTSS AALLLL AABB OOUUTT Motivating Educating Empowering MULTIP LE SCLEROSIS FOUN DATION MEEMEE IITTSS AALLLL AABB OOUUTT Motivating Educating Empowering MULTIP LE SCLEROSIS FOUN DATION Our educational programs presented through the fall highlighted the latest news and research to help you live well with MS. Here are some of our most recent stops Sept. 15 Vero Beach Fla. Be Your Best with MS Stuart Shafer M.D. a neurologist with Vero Neurology and Wendy Booker MS advocate and motivational speaker gave a presentation at the Vero Heritage Center. Dr. Shafer spoke about the importance of the relationship between patient and neurologist how to recognize new symptoms and how to cope with the side effects of the medications. Having attempted to climb Mount Everest twice Wendy Booker is currently working on the Climb On Foundation to help newly diagnosed MS patients. Support for this program was provided by Teva Pharmaceuticals. Sept. 16 Atlanta Ga. MS The Big Picture What is it Ben Thrower M.D. medical director of the Andrew C. Carlos MS Institute at the Shepherd Center offered a program at the Center. Dr. Thrower gave an overview of MS that ranged from early treatment to present treatment options. Support for this program was provided by Teva Pharmaceuticals Biogen Mallinckrodt Pharmaceuticals and Acorda Therapeutics. Oct. 1 Roanoke Va. MS Advocacy Event MS Advocates Unite Alissa Ayden MSF Support Groups and Outreach manager gave a presentation at a dinner event at the Holiday Inn Tanglewood-Roanoke designed to motivate educate and empower people with MS to join together in local grassroots MS advocacy efforts. The presentation included an opportunity to connect directly with the MSFs ongoing MS awareness and advocacy initiatives. The MSF-affiliated Roanoke Valley MS Support Group was in attendance as well and welcomed all to join their group. Oct. 6 Decatur GA Managing Your MS Symptoms Sherrill Loring M.D. neurologist at the Andrew C. Carlos MS Institute at the Shepherd gave a dinner presentation at the Courtyard Marriott-Downtown Decatur. Support for this program was provided by Teva Pharmaceuticals. Oct. 15 Atlanta Ga. Attack of the Immune System Dealing with MS Relapses Ben Thrower M.D. medical director of the Andrew C. Carlos MS Institute at the Shepherd Center in Atlanta will present a talk at the Shepherd Center. Support for this program was provided by Teva Pharmaceuticals Biogen and Mallinckrodt Therapeutics. Oct. 21 Topeka Kan. MS Advocacy Event MS Advocates Unite Alissa Ayden MSF Support Groups and Outreach Manager offered a program at the Ramada Convention Center in downtown Topeka. The MSF-affiliated MS and Friends Support Group was in attendance as well and welcomed all to join their group. To find out if the MSF will be visiting your local community stay connected through our Facebook page at www.facebook.comMultipleSclerosisFoundation. 49 MSFocus Fall 2015 By Hildy Berger Riding to the Rescue Ahhh the roar of the wind the rumble of an engine and the freedom of the open road. For many people nothing heralds the coming of spring like the first long ride after a cold seemingly endless winter. Bikers are generally thought of as a tough bunch yet many clubs and independents consistently fundraise for causes close to home and heart. On June 6 for the second year the Independent Riders Bike Run organized by Dana and Anthony Cantillo and named in memory of riding brother Ken Lisa found dozens of riders kicking off in Augusta N.J. on their way to a fun-filled picnic at Promise Land State Park in Greentown Pa. You didnt have to be a biker to enjoy food drink raffles and fellowship. Registration fees event proceeds and donations went to the MSF. The B.A.M.S. Bikers Against MS benefit organized by Russell and Misty Terry with the Colorado State Chapter of Bulwarks Motorcycle Club in Colorado Springs took place on June 13. Highlights included door prizes a silent auction and activities for the whole family including a timed Big Wheels Obstacle Course in the parking lot of B.A.M.S. sponsor Willies South Lounge. These two great events raised more than 5800 combined for the Foundation Sharing and Caring is twice the fun The Share and Care event for the MSF was hosted for the second year by the caring and generous staff at South Shore NeurologicAssociates Islip and Patchogue N.Y. locations. MSF volunteer Susan Strejlau organized the event. This years bounty included a flat screen HDTV Hamptons package dinner at Southampton Publick House one night at the Southampton Inn tickets for The Ride a new interactive entertainment experience admission to Ripleys Believe It or Not museum cookware and cutlery and donations from Costco North Fork Wineries www.FragranceNet.com and introductory flying and trapeze lessons. Special thanks to the young volunteers from St. Josephs High School who helped organize the MSF information table and brought many of the coveted restaurant and salon gift certificates. Afterwards Susan wrote Organizing and running a fundraiser for the MSF is a very rewarding experience. I appreciate all that they do for the MS population and 50MSFocus Fall 2015 want people to know how they can benefit from their programs and services. That being said even more rewarding is having the opportunity to touch the lives of people who share the disease with me. Well thank you Susan This year more than 1300 was donated from Mays event. Support Groups Supporting Multiple Sclerosis Foundation On July 24 The Gingerbread House was the place to be if you were anywhere in the Savannah Ga. area Fashion for MS presented by the MSF affiliated Influenced MS Support Group offered locals the chance to enjoy an evening of fellowship entertainment tempting munchies and lots of glamour courtesy of Dress Barn and Divine Mens Wear which provided trendy gear for the support group membersmodels. Local businesses came out full-force donating catering and desserts Southern Palate Got Cake photography Corey BrooksSpotted Kingdom Moments Photography decor Anmol Kismet Weddings Andrea Brown Events Kato Florists music Coastal Harp style services Savannah Makeup Professionals by Lynn and Co. photo booth TapSnap 1135 and printing Chozen Graphics. Special thanks to event coordinator Rosalind J. Ashe-Gay of Paradise Events Ent. and The Influenced group leader Lottika Gwynn and who went above and beyond to help organize and garner local media coverage including a story that aired on WTOC-TV This is the second year that MSF-affiliated Living Well with MS Support Group partnered with Rick Treworgys Muscle Car City Museum in Punta Gorda Fla. for a Car and Bike Show fundraiser. The crowd enjoyed music and door prizes and local car and motorcycle enthusiasts brought out their best. Thanks to all the Living Well group members and leader Nikki Chouinard. Proceeds from Fashion for MS and the Car and Bike Show brought in 1000 to the MSF. Much appreciation to Loryn Sabelli manager Clicks Billiards No. Orlando and Paulo Rodrigues Orlando Holdem for organizing the Golf Pool and Poker Triathlon for the MSF which brought in 3400 in proceeds and direct donations Also Friends MS Walk coordinator Samara Wolf and loyal helpers Rico Darien Courtney Jackie and Drita volunteered to do a Jar Drive in Taylor Mich. on June 6. The drive collected more than 1200. We cant thank you enough for giving up a beautiful Saturday afternoon to help out youre the best And Geoffrey and Chris Coffee owners of The Steak House restaurant in Wellsboro Pa. donated 250 from a dessert sales fundraiser on June 26 sweet 51 MSFocus Fall 2015 Mad Hatter Luncheon Honoree Patrick Daoud Cocktail Hour Luncheon Fashion Show Silent Auction Friday Nov. 6 at the Hyatt Regency Pier Sixty Six Ft. Lauderdale Fla. For tickets or more information about these events contact Nathalie Sloane at 954-776-6805 or nsloanemsfocus.org Media Inquiries Adrienne Mazzone TransMedia Group at 561-750-9800 Upcoming MSF Events Hildy Berger is the MSFs Fund Development Coordinator. If you are interested in planning a fundraising event or would like more information contact the MSF Fund Development Department at 800-225-6495 or send an email to hildymsfocus.org. MSF Fund Development Events The City of Boca Raton Fla. proved that it does in fact have talent for the second year in a row A sold-out crowd packed The Dubliner Irish Pub in Mizner Park on Aug. 17 for the annual Bocas Got Talent showcase as part of Boca Chamber Festival Days.This event drew a record number of attendees including Mayor Susan Haynie who was one of the judges. Other celebrity judges included Boca Tribune editor Pedro HeizerESPN sports anchor Emerson Lotziaand localTV and radio personalityAndrea OCampo. The three winners of the evening were 11- year-old singing sensation Ava Faith first place Bocas funniest dentist Dr. Dan Greenstein D.D.S. second place and powerhouse vocalist Tomey Sellars third place. Guests also enjoyed a lively performance by 14-year-old local entertainer Maggie Baugh who sang and played guitar. The event was cohosted by Jon Sahn of Ascendant Planned Giving and Lori McQuestion aka Two Story Lori with TransMedia Group and sponsored by Plum Productions. The event doubled in attendance as well as talent from last year and was a huge success with all of the proceeds from the nights activities going to MSFs programs and services. MSF would like to extend a special Thank You to Ascendant Planned Giving Plum ProductionsThe Dubliner Irish Pub Kendra Scott Touch Suite Ebikes2you Sunny 107.9 97.9 WRMF X102.3 640AM Sports ESPN 106.3 Media Gypsy The Boca Raton Tribune Boca Raton Bowl Total Traffic and Weather Network ILoveKickBoxing.com and Flamingo Road Nursery. MSF appreciates all of your time and support for making this event fun and successful 52MSFocus Fall 2015 Tablets phones and other high tech personal mobile devices are very popular gifts during the holiday season. This guide is to help you ensure that you get the most bang for your buck when purchasing either one. In addition it will help you choose appropriate technology for your needs. While there is no one-size-fits-all answer and the choices available can be overwhelming some basic information will help you wade through all the hype. Please note that cellular data plans will not be addressed in this article. In addition there are tabletslaptops that run on Windows 8 that are not reviewed in this article. There are several factors to consider before you purchase. First it is important to think about why you want to purchase a device. Secondly make sure that the device you buy has room for growth. While there may be some needs that you are aware of now there are many more uses that you may not think of at the moment that will prove to be very helpful. Also the obvious consideration is price. Technology is becoming more powerful and competitively priced all the time. You should set a reasonable price within your budget and then shop for the best device for your needs. Lastly you get what you pay for. It is recommended to buy from reliable sources where it will be easy to get good customer service on a known brand. Which Manufacturers Apple makes both the operating system and the hardware for all Apple devices. The Apple Retail Store and the Apple website sell Apple devices. They are also sold at some major retail stores such as Walmart Best Buy and Target. The prices are regulated by Apple and new models are not generally discounted or only discounted by a small amount. While Apple devices are excellent Android devices are often less expensive and just as high-tech if not better. In either case buying a manufacturer refurbished device andor older model is a great way to save money. Apple sells certified refurbished products on www.apple.com. They have the same manufacturer warranty as a new product and are 15 percent to 18 percent less expensive. It is also possible do the same with Android devices however there is no one particular website or retail store for this service. Holiday Mobile Technology Shopping Guide By Joanne Fortunato 53 MSFocus Fall 2015 If you are purchasing both a phone and a tablet choosing the same manufacturer is a good idea. Apple and Samsung are very highly rated for being able to sync data to devices in their product line. When purchasing a phone the carrier you choose is as important or more important than the device. Carriers will usually work with most devices. Most likely you already have a phone. Many carriers offer deals especially on older models. If you already have a Wi-Fi-only tablet note that you cant add cell service as they have special hardware that has to be in place from the manufacturer. Samsung and Apple are the industry leaders. Samsung and Apple are rated highly in almost all categories. Apples lowest price new device is at least 300 while there are several Samsung devices under 200 that are considered a good purchase. There are several other manufacturers that are worth mentioning. LG also makes phones and tablets. However most reviews state that the build quality of LG products are rated highly but the performance quality is low. The Kindle Fire HD from Amazon would be a great choice if you are considering just a tablet. It is rated highly on many website reviews especially the new models. One drawback is that it is not generally carried in retail stores. However Amazon has great customer service so returns and exchanges are simple. There are many other manufacturers for Android tablets. The best way to determine if a particular brand is worth purchasing is to check the review websites listed in this article. Resources Choosing a TabletSmart Phone Search using the name of the site with the words choosing a tabletsmartphone How Stuff Works WikiHow Digital Trends Note has ads but is very useful Comparison of Device Specifications Search using the name of the site with the words review tabletsmartphone specs Top Ten Reviews Both Tablet Monkeys Tablets only. So comprehensive it might be overwhelming Compare-cellphones.org Phones only. Easy to do side-by-side comparisons There are many other sites and companies that are helpful and reliable too many to mention.These are a just few additional sites worth exploring CNET TechRadar and Engadget Reviews. A good web search will yield helpful practical information. 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. MSFocus Fall 2015 Love Marriage and the MS Beast By Tim Surkovich Everyone who is married or has ever been married knows that marriage real marriage not the made for TV movie kind is tough. Katherine Hepburn used to say Men and women should never get married they should just live close to each other and visit occasionally. She may have had a good point but most of us will still spend years dreaming of and pursuing that perfect someone who will be half of our fairy tale marriage. And sometimes we get lucky and find not a perfect person but one that is perfect for us. We work hard building a life together raising kids living our idyllic marital dream. Enter into that dream the nightmare that is MS and all of a sudden we have the villain to our story. Because having MS as a part of your family is rough. If you have MS or you love someone with MS an incredible amount of stress is automatically added to your marriage. Now I am married to a wonderful amazing and supportive woman but let me tell you while I always love her I have miserable days where I really dont like her. Its not that she does anything differently on those days its just that there are days sometimes lots of them where I feel sorry for myself. Days when my whole body seems to be rebelling against me. Days where my mood swings resemble the steep curvy fast roller-coasters I love to ride. And on those days I dont like myself much less anyone else. And I know on those days she struggles as well. While she does realize its the disease that creates this beast shes married to that gives her little comfort. We can be in the middle of a perfectly lovely date having dinner going for a ride listening to music visiting with friends and BAM Goodbye Dr. Jekyll hello Mr. Hyde. It hits me that fast a wave of pain or depression or fatigue that wasnt there two seconds ago and thats the end of the good time. I can go for days weeks and blessedly even months where this doesnt happen or happens very infrequently but overall its become a fact of our marriage that at any given moment the MS Beast can strike. The best way to deal with these attacks is for you and your partner to understand and talk about where they are coming from. Keeping it all in trying to be brave doesnt work. Trust me been there done that and it only made things worse. Its like pretending the dragon in the fairy tale isnt really there 54 55 MSFocus Fall 2015 and it will just go away. You have to work together to slay the dragon or at least calm it down enough so it doesnt eat at your marriage until there is nothing left. Working together may sound trite but it is true. If you are the one with MS you have to be careful not to waste time resenting your partner because they dont have it or they dont understand what you go through. And if you are the one without MS try not to take every- thing your partner may put you through so personally. Its really not about you even if it feels like it is. This can be extremely difficult to do but it will alleviate a lot of negative feelings on both sides if you work on it. It took my wife and me a long time to find each other. When we finally did I had already lived with MS for a number of years. She knew I had it she even knew a little of what may be in store. I cant say if thats a better or worse situation. We didnt ever have the time to build a relationship that didnt include that nasty third party MS. On the other hand we werent blindsided after years of what we thought was supposed to be happily ever after and finding out those years would include MS. No matter what your situation though add to the better moments every chance you get so you have some- thing to draw from when those worse moments roll around. Once in a while in an ordinary life love gives us a fairytale. We have that quote hanging in our kitchen. In our fairy tale as in most fairy tales the villain in this case my MS isnt going to win. Tim Surkovich is the president of the Project Diagnosis Foundation and has had MS for the past 24 years. He writes a blog and is actively engaged in public speaking. T-Shirts Sweatshirts Bears Cooling Items Jewelry Orange Ribbon Awareness Items Car Magnets and so much more. See our online catalog at www.themsshoppe.com 920 238-5138 infothemsshoppe.com A portion of all proceeds goes to the MSF 56MSFocus Fall 2015 In2013theFoodandDrugAdministration approved Tecfidera Dimethyl Fumurate Biogen a twice-daily oral therapy for relapsing-remitting multiple sclerosis. Since the approval of Tecfidera new safety issues have arisen primarily concerns regarding the occurrence of progressive multifocal leukoencephalopathy and lymphopenia. In December 2014 the Tecfidera prescribing information was updated to include warnings and precautions related to PML and lymphopenia. The FDA approval of Tecfidera for patients with relapsing-remitting MS was based on data from two Phase III clinical trials the CONFIRM COmparator and aN oral Fumarate In RRMS and DEFINE Determination of the Efficacy and Safety of Oral Fumarate in RelapsingRemitting MS trials. More than 2600 patients were enrolled in the CONFIRM and DEFINE trials. In the CONFIRM trial twice-daily Tecfidera decreased the annualized relapse rate by 44 percent compared to placebo. At two years treatment with Tecfidera significantly decreased the number of patients who relapsed by 34 percent. In the DEFINE trial twice-daily Tecfidera significantly decreased the annualized relapse rate by 53 percent compared to placebo. At two years treatment with Tecfidera significantly decreased the number of patients who relapsed by 49 percent and decreased the 12-week confirmed disability progression as measured by the Expanded Disability Status Scale by 38 percent. In addition both trials demonstrated that treatment with Tecfidera significantly reduced lesions in the brain compared to placebo. Common adverse events associated with Tecfidera in the CONFIRM and DEFINE trials included flushingdiarrhea nausea and abdominal pain. Uncommon but serious adverse events included decreased lymphocyte counts and elevated liver aminotransferase levels. As with many medications clinicians have learned more about the serious side effects of Tecfidera during the post- surveillance marketing period the period of time after a drug has been approved by the FDA than during the clinical trial development program. Dr. Ben Thrower director of the MS Institute at Shepherd Center and medical advisor to the Multiple Sclerosis Foundation explained that more safety data are generally revealed during the postsurveillance period because more patients have been exposed to the treatment and patients have been exposed to the treatment for longer durations. To date there have been three documented reports of PML with Tecfidera. PML is an opportunistic viral infection of the brain caused by the John Cunningham virus that typically occurs Tecfidera for RelapsingTecfidera for Relapsing Multiple SclerosisMultiple Sclerosis By Ellen Whipple BS Pharm.D. MSF Medical Advisor 57 MSFocus Fall 2015 Ellen Whipple has been a medical advisor with the MSF since 2002. She is a clinical pharmacist employed as a medical affairs specialist as well as an assistant clinical professor at the University of Georgia. She received her Doctorate of Pharmacy degree from the University of Georgia College of Pharmacy in 1994 and was later employed at the Shepherd Center and Childrens Healthcare of Atlanta. Ellen is an active member of the Georgia Society of Health System Pharmacists. She has also served on the Pharmacy Advisory Committee for the Department of Community and Health. only in patients who are immuno- compromised. PML usually leads to death or severe disability. At the first sign or symptom suggestive of PML Tecfidera should be withheld and an appropriate diagnostic evaluation by a neurologist should be performed. Typical symptoms of PML which are diverse and generally progress over days to weeks include progressive weakness on one side of the body or clumsiness of the arms and legs disturbances of vision and changes in thinking memory and orientation leading to confusion and personality changes. Patients on Tecfidera experiencing any of these symptoms should contact their neurologist immediately. According to Dr. Thrower It is very concerning that PML has been linked to another disease-modifying treatment for MS. He went on to clarify fears of devel- oping PML in patients otherwise doing well on Tecfidera are not necessarily a reason to stop the medication. In clinical trials lymphopenia was reported in patients receiving Tecfidera. Data from the CONFIRM and DEFINE trials suggested that lymphopenia was a serious but rare side effect of Tecfidera. In these trials patients who developed lymphopenia were generally not at an increased risk of developing serious infections. Since the approval of Tecfidera much more has been learned about the occurrence of lymphopenia. Data suggest that up to 40 percent of patients receiving Tecfidera for relapsing-remitting MS may develop lymphopenia. According to the Tecfidera prescribing information mean lymphocyte counts generally decrease by about 30 percent during the first year of treatment and then stabilize thereafter. However some patients may experience more pronounced and serious decreases in mean lymphocyte counts. For this reason many clinicians recommend monitoring for lymphopenia more often than recommended in the Tecfidera prescribing information. Patients should therefore not be surprised if bloodwork is ordered at baseline prior to starting treatment and then every three months for the first year of treatment. Postmarketing data suggest that the occurrence of lymphopenia and PML with Tecfidera may be related. All three patients to date who have been diagnosed withPMLalsohadpronouncedlymphopenia. In order to continually assess the occurrence of lymphopenia and its relation to PML several clinical trials have been initiated. The DIMAT-MS trial is investigating the effect of Tecfidera on T-cells in patients with relapsing-remitting MS another trial is investigating the effect of Tecfidera on lymphocyte subsets and immunoglobulin levels in patients with relapsing-remitting MSand the REALIZE trial is a retrospective trial chart review looking at lymphocyte levels in patients who received Tecfidera. Stay tuned for more information. Sandoz a Novartis company recently launched Glatopa glatiramer acetate injection for the treatment of the relapsing- form of multiple sclerosis. Some people with MS are being switched to Glatopa which is an FDA-approved generic substitutable for Copaxone 20 mgmL by their doctor pharmacy or managed care organization. However some individuals who have switched have not received information about available support programs. According to a statement from Sandoz We believe that some patients may have received inaccurate information regarding the service offering we provide to Glatopa patients. It is important for patients to fully understandand quickly receive access to the services and support they need. A patient support program is available to provide assistance to individuals who have been switched to Glatopa. This assistance called GlatopaCare includes several important services including training and support for the injection device which may differ from that used with their previous medication and co-pay assistance including a 0 copay option for eligible persons. To learn more about the support available or to apply for this assistance visit www.glatopa.comregister or call 855-GLATOPA 852-8672. See page 61 for more details about this new treatment. 58MSFocus Fall 2015 Assistance Available for Individuals Switching to Glatopa 59 MSFocus Fall 2015 Relapses disability progression linked to stopping meds New research finds that almost 40 percent of clinically stable multiple sclerosis patients had some disease activity return when they stopped taking their medications. Researchers also found that restarting medication reduced the risk of disability progression. NYU Langone Medical Center researchers studied 181 patients from the global observational MSBase Registry examining MS relapse rates and disability progression rates in patients who stopped taking disease-modifying therapy. After discontinuing medication 24 percent of patients experienced a clinician- reported relapse 32 percent sustained three-month disability progression and 10.6 percent of patients recorded both relapses and disability progression. Researchers found that 42 percent restarted medication after a median of 22 months. Restarting medication was associated with a 59 percent risk reduction of disability progression. The findings were presented at the American Academy of Neurology annual meeting in Washington D.C. Dr. Thrower This is a reminder about the importance of staying on a disease- modifying therapy. Managing MS is like a marathon not a sprint. We now have 13 FDA-approved disease-modifying therapies. These medications are best thought of as an insurance policy for the future with the goal being fewer relapses fewer new lesions on MRI and less likelihood of disability progression. These treatments are not designed to get rid of symptoms or make a person feel better. Almost daily in our clinic I hear a person with MS say Doc that drugs not working Ive been on it for over a year and I dont feel any differently than I did when I started it. My immediate reply usually shocks them when I sayThats awesome What I mean is that stability over long periods of time in the setting of a disease that typically gets progressively worse without treatment is a success. For people who have been stable over time on their disease-modifying therapy it may be tempting to stop it. This study shows that there is the risk of a relapse andor progression of disability when these treatments are stopped. This article does not discuss MRI findings when therapies are stopped but I suspect that many people who stopped treatment also had new lesions on their MRIs The MS News column includes analysis from MSF Senior Medical Advisor Ben Thrower M.D. Drawing from the top MS news stories of the quarter Dr. Thrower assesses what the news means to you the person with MS. MS NEWS and What It Means to You 60MSFocus Fall 2015 Study finds DMT costs up dramatically since 2002 A new study finds that the costs for multiple sclerosis DMTs have dramatically outpaced inflation and are higher than rates for drugs in similar classes. The studys authors are urging clinicians payers and manufacturers in the U.S. to tackle the issue of soaring costs. Researchers at Oregon State University investigated whether the costs for all MS DMTs have risen since 2002 the trend cost links between new DMTs and older DMTs and to compare the DMT costs in the U.S. and other countries. They found a dramatic escalation of costs for first- generation DMTs since 2002 that was higher than prescription drug inflation and despite the introduction of multiple DMTs the cost of older DMTs have increased to match the prices of new competitors and that the costs for MS DMTs are much higher in the U.S. than in Canada Australia and the U.K. While the authors are unsure why costs have gone up so dramatically they point to profits as the main motivation. The findings were published in the journal Neurology. Dr. Thrower MS is an expensive health problem and the rapidly rising costs of MS therapies is of concern. As these costs rise insurance companies are increasingly fighting back by limit- ing treatment options or creating rules that a person must try drug X before they can use drug Y. While the need for cost control is understandable these rules sometimes are not based upon how MS is actually managed in the real world. Hopefully we can find some bal- ance between profits ongoing scientific innovation and access to treatment. Lipid mediator linked to good cholesterol may reduce inflammation Weill Cornell Medical College researchers have discovered that HDL in blood carries a protein that powerfully regulates immune function. Together they play an important role in preventing inflammation in the body. A lipid molecule called sphingosine 1- phosphate S1Pa key regulator of vascular function is bound to HDL. But until this study researchers did not know what specific function HDL-bound S1P served. The team studied mice that lacked HDL- bound S1P and discovered the mice developed worse inflammation in a model of multiple sclerosis. The reason for this the investigators foundis that HDL-bound S1P suppresses the formation of T and B immune cells in the bone marrow. While both immune cells help fight infection an overabundance of these cells can also trigger unwanted inflammation. Results of mouse model studies some- times do not translate to humans and may be years away from being a marketable treatment. The authors suggest that molecules that mimic HDL-bound S1P could be useful in reducing damaging inflammation that has gone awry. While such molecules are not known and will need to be developed in the future Gilenya a related S1P1 receptor inhibitor has been approved for use in multiple sclerosis. The study was published in the journal Nature. Dr. Thrower The discovery that good cholesterol HDL may reduce inflammation in MS has many potential implications. Strategies to increase HDL may have positive effects on MS. In 2013 researchers at the University of Tennessee showed 61 MSFocus Fall 2015 that people with MS tend to have lower levels of HDL and that more severe forms of MS were associated with even lower levels of HDL. Researchers at the University of Buffalo have reported this as well and also noted that there is a relationship between lipid levels Vitamin D and MS severity. Higher levels of HDL were associated with higher levels of Vitamin D and less disability. This new study sheds further light on how HDL may play a role in MS and may lead to new treatments. For now it looks like we need to monitor people with MS for low Vitamin D levels and encourage strategies to increase HDL levels. This may include diet and exercise. Studies looking at how the cholesterol lowering drugs called statins affect MS have yielded mixed results 62MSFocus Fall 2015 Q.Q. Can multiple sclerosis cause brain inflammation A.A. Inflammation in the brain is a key contributor to multiple sclerosis severity. Once a diagnosis of MS is made medications are often started to reduce that inflammation. MS is characterized by increases in many different inflammatory chemicals called cytokines. These inflammatory chemicals may disturb the blood brain barrierwhich normally limits inflammation from getting into the brain. Once this barrier is disturbedinflammatory chemicals can enter the brain with greater ease. Many natural substances can reduce the levels of these inflammatory chemicals and reduce disruption of the bloodbrain barrier. The immune system in people with MS shifts towards a proinflammatory immune response. Certain inflammatory chemicals create this type of dysfunctional response. Q.Q. How does pregnancy affect a womans risk of developing multiple sclerosis A.A. In an Australian study of 282 people with multiple sclerosis symptoms having one pregnancy was associated with a nearly 50 percent lower risk of developing MS symptoms compared to those who were never pregnant. Risk decreased even more with additional pregnancies according to the study. The researchers couldnt say exactly why pregnancy may lower MS risk but they speculated it could be the increase in estrogen during pregnancy or the effect pregnancy has on inflammatory genes involved in MS. Q.Q. How does smoking affect people with multiple sclerosis A.A. People with multiple sclerosis who smoke appear to experience a more rapid progression of their disease according to a report in an issue of Archives of Neurology one of the journals of the American Medical Association. Cigarette smokers are at higher risk of developing MS according to background information in the article. However the effect of smoking on the progression of MS remains uncertain. Brian C. Healy Ph.D. of Brigham and Womens Hospital Harvard Medical School and Massachusetts General Hospital Boston and colleagues studied 1465 people with MS who visited a referral center. A group of 891 people was assessed over time to evaluate the rate 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 Sharecare.com at httpwww.sharecare.comgroupmultiple-sclerosis-foundation. 63 MSFocus Fall 2015 of conversion from relapsing-remitting MS to secondary-progressive MS steady decline that develops after a period of relapsing-remitting symptoms. During an average of 3.34 years 72 people 20 of 154 smokers 20 of 237 former smokers and 32 of 500 never-smokers experienced this progression. The conversion from relapsing- remitting MS to secondary-progressive MS occurred faster in current smokers compared with never-smokers but was similar in former smokers and never- smokers the study authors write. Q.Q. How does myelin damage affect people with multiple sclerosis A.A. Multiple sclerosis attacks the myelin coating around nerves causing demyeli- nation. Much like a frayed wire a damaged nerve may be able to conduct some electricity but it is no longer in perfect working order. Demyelinated nerves cause symptoms such as vision changes numbness tingling and pain. People with relapsing- remitting MS experience acute episodes of demyelination followed by periods of remission during which their nervous system can find ways to compensate for some of the damage that has been done. This is what accounts for the waxing and waning of symptoms in people with RRMS. However even though symptoms may improve or disappear altogether the nerves are still damaged and have to work overtime to compensate. 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. What are the chances of my child getting multiple sclerosis if I have it A.A. The risk of your child developing multiple sclerosis although higher than the general population still remains low. While there is some increase in the risk to children who have a parent with the disease the actual risk is small 95 to 97 percent chance that MS will not occur. At the present time there is no way to diagnose MS or assess the MS risk in a particular infant before or after birth asserts Dr. Rosalind Kalb Ph.D. author of Multiple Sclerosis The Questions You Have The Answers You Need. 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