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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 Marissa A. Barrera MS MPhil MSCS CCC-SLP Briea Curington Stefanie DiCarrado DPT Joanne Fortunato BS MA Herb Karpatkin PT DSc NCS MSCS Angelina Leary Michaela Medved MA CCC-SLP Teresa Biber LoMonte MS CCC-SLP Debra Ross Nelson M. Stern Ben Thrower M.D. Bill Walker Ellen Whipple BS Pharm.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 Be Cool with Active and Passive Cooling Garments 6 A World of MS Information in Your Pocket 8 Innovations in Assistive Technology 13 Teen is Taking on MS 16 To Beat MS Embrace Your Inner McMurphy 18 Meet Your 2015 MSF Ambassadors 24 Applications BTG and Caregiver 31 Better Living Through the MSFs Assistive Technology Program 38 A Disabled Attorney a Hotel and ADA 42 Team Fearless MS Our MS Superheroes 46 21st Century Cures Act Passes U.S. House 66 CONTINUING TOPICS As We See It 4 MSF Mailbox 5 Support Group Spotlight 30 Facebook Feedback 37 Uncle Sams Helping Hand 40 Voices Lessons From a Life With MS 44 PS Whats New 49 Updates by the Pharmacist 53 MSF on the Road 56 Regional Events 57 MS Tech 101 60 Men MS 62 From the Library 64 MS News 67 Q A 70 4MSFocus Summer 2015 In the real world of charitable organiz- ations considerable time and resources are devoted out of necessity to pursuing various fundraising grant writing and planned giving initiatives. These produce the income necessary to fund the programs and services that benefit constituents. Additionallyas with their for-profit counter- parts charitable organizations strive to garner as much publicity as possible in order to keep their name in the public eye. By doing so they seek to maintain wide- spread brand recognition which in turn enables their initiatives to generate more income thus helping more people. While this strategy is common in the nonprofit field it often leads to a very spirited competition for donors.This has been known to create barriers between organizations serving a common cause. This was the case with multiple sclerosis. Historically there was limited or no interaction between the leading advocacy organizations.A good analogy would be to think of each as being one of the planets in the solar system rotating on their axis while maintaining a unique orbit around the sun which represents the MS population.While most of the organizations enjoyed a degree of success something was missing from the cause. Enter the MS Coalition. Ten years ago in Naples Fla. a meeting took place between representatives of the MSF the Consortium of MS Centers and the Multiple Sclerosis Association of America. The goal was to determine how to eliminate barriers of communication and to identify areas of inter-organizational collaboration in order to better serve the MS community-at-large. Thus the MSC an association of national associations was born. Its motto one team one dream. In the years since its member ranks have grown to include Can Do MS Accelerated Cure Project for MS United Spinal Association the National Multiple Sclerosis Society and the International Organization of MS Nurses. Today the MSC serves as a role model for other health-related causes. The MSC has engaged in numerous advocacy initiatives. It participates in the annual public policy program on Capitol Hill in Washington D.C. organized by the National MS Society. It takes stands on issues with the FDAinsurers and healthcare providers. Last year the MSC proudly released a consensus paper titled The Use of Disease-Modifying Therapies in MS a summary of current evidence about those therapies to provide support for their broad access. This year marks a transition in MSC leadership with the election of Lisa Skutnik as the new president of the MSC.We wish to congratulate her while acknowledging the diligent efforts of Doug Franklin for his prior ten years of leadership. Jules Kuperberg Alan R. Segaloff Co-Executive Director Co-Executive Director Get To Know the MS CoalitionGet To Know the MS Coalition I wanted to say thank you for the Cooling Program. I just received my vest and I am very thankful the Multiple Sclerosis Foundation was able to assist me. I learned of the program through one of the local MS meetings I attended. I decided to look into it further because I live in Phoenix Ariz. and spend a great deal of time outside in the heat. This is the first summer that I will face since being diagnosed with MS. Believe it or not until now I have always enjoyed the summer heat of Phoenix. My job requires me to work outside quite often and summer is quickly approaching. We reach temperatures of over 100 degrees on a regular basis for 3 to 4 months. Although it is early in the spring we have already had a few warm days here and I quickly realized that my body has changed. I have been uncomfortable with the heat for the first time ever.I just received my vest within the past few days and have not had the chance to try it out yet but I am confident that it will keep my core temperature cooler while I am out in the heat. Being diagnosed with MS is an experience I never expected. It is quite devastating. Ive received so much support from different support groups drug companies and the Multiple Sclerosis Foundation. It has helped me to try to see the good in it all. Thank you for all you do. Kind regards Amy Roberts Chandler Ariz. Thank you so much for the financial help in getting my teeth fixed from a fall. Thanks Francine Cookie Westrich Fort Lauderdale Fla. Thank you very much for sending a computer to me. Being housebound the computer will bring a lot of entertainment to me. Wilfred Mallet Harrison Idaho Thank you so much for the cooling vest and neck scarf. I live alone and have a large garden. This is truly a life saver. I also get overheated doing house work. Sincerely Paula Young Cottage Grove Ore. Thank you so much for helping me out with my water therapy at the wellness center. I feel so much better when Im in the pool. I feel some normality in my body and mind. I had to give up walking a number of years ago. I fell so much and broke my back. Ive depended on the Lord so much and have prayed so hard for an answer. Ive been so depressed for so long and thanks to the Lord and you I have a new lease on life. Thank you so much and if there is something I can do to help you in any way I will to the best of my ability. You are a Godsend Thank you Peggy Storey Thomaston Ga. MSFocus Summer 20155 If you have any comments or questions for the MSF they can be emailed to editormsfocus.org or written to Editor MSFocus 6520 N. Andrews Ave. Ft. Lauderdale FL 33309 MSFocus Summer 20156 Almost all persons with multiple sclerosis suffer from increased sensitivity to heat also known as thermosensitivity. An increase in heat will often result in a worsening of symptoms such as fatigue visual loss spasticity weakness and pain. The increase in heat can be due to external or internal factors. Externally an increase in heat can result from an increased environmental temperature. Internally core temperature can increase because of a fever from an infection or during exercise that can also lead to symptoms of thermosensitivity. The increase in heat because of exercise can be especially troublesome for persons with MS as exercise is needed to address the loss of mobility that is usually inevitable with this disease. However the use of readily available cooling garments can be extremely helpful for persons with MS in limiting the effects of thermo- sensitivity. Proper use of these garments can not only decrease the effects of heat but also allow the person with MS to exercise for longer periods of time. The purpose of this article is to discuss two of the best known types of cooling methods active and passive cooling and give some suggestions as to how to decide which approach might be best for you. Passive Cooling is probably the most widely used type of cooling. It is called passive as it does not rely on a power source to cool but rather cools through the use of ice packs or gel. Passive cooling is generally inexpensive and portable but has the disadvantage of limited duration of cooling as the devices themselves require re-cooling every two to four hours. They also can be heavy. There are many different types of passive cooling available. These include Wearable water-based ice packs These are generally worn in garments such as vests hats or bandanas. The packs have to be frozen and can provide cooling for about three hours. The amount of cooling they provide can be somewhat regulated by the number of packs used. After the ice has melted they have to be refrozen which limits the amount of time they can be used. Although these provide effective cooling some patients complain they are heavy especially if a number of ice packs are required. It is the least expensive of the cooling options and is available for free through organizations such the Multiple Sclerosis Foundation and the Multiple Sclerosis Association of America. By Stefanie DiCarrado DPT and Herb Karpatkin PT DSc NCS MSCS Phase Changing Packs These contain a gel-like oil that freezes and can be used in the same manner as water-based ice packs. The gel has a higher freezing temperature than water-based packs and so it has the advantage of a longer period of cooling and the ability to cool again by submerging in ice water does not require a freezer. Hydrogel packs These use a gel that is activated when placed in water. There is also a hydrogel vest with built-in hydrogen crystals. This is lighter than other vests but the cooling lasts for a shorter period of time. Water-activated garments These retain the water temperature after soaking and cool as the water evaporates Active Cooling is a somewhat more high tech approach to cooling. Rather than achieving cooling through ice packs or gel packs active cooling uses a motorized system to circulate cold water around the body. These devices were originally developed to aide in treating athletic injuries and decrease swelling following orthopedic surgery. The advantage of active cooling is that because of the motorized component the cooling effects can last longer. Additionally the devices are constructed so that if desired only specific body parts can be cooled such as shoulders elbows knees and ankles. There are two significant disadvantages to active cooling one being cost. They can cost anywhere from 150 to several thousand dollars. The other disadvantage is that they can be much heavier as they require a power source. This makes them well-suited for being used in an indoor setting where the individual does not have to move around a great deal but a problem for outdoor use. Active cooling comes in a variety of garments such as vests and shorts but all must be connected to a power source. In summary a wide variety of cooling garment options exist that can benefit all persons with MS who suffer from thermosensitivity. Passive cooling is less expensive but maintains cooling for a shorter period of time. Active cooling is more expensive but can maintain cooling for longer. It does however require connection to a power source making portability something of a problem. With either choice however the thermosensitive person with MS will be in better shape. MSFocus Summer 20157 Herb Karpatkin PT DSc NCS MSCS is an assistant professor in the DPT program at Hunter College as well as the owner of Herb Karpatkin Physical Therapy a private practice specializing in MS. Dr. Stefanie DiCarrado PT DPT is a physical therapist at Aspire Center for Health and Wellness and is a project manager and content developer at the Brookbush Institute both based in New York. Stefanie has a B.S. in Information Technology received her doctorate in Physical Therapy at Hunter College and is a Certified Personal Trainer and Corrective Exercise Specialist through the National Academy of Sports Medicine. MSFocus Summer 20158 For iOS iPhone 1 - Sign in to App Store 2 - Search for MSFocus Radio 3 - Click on icon 4 - Click Install 5 - Once app is downloaded locate on phone homepage 6 - Click on MSFocus Radio app to listen For Google Play Android 1 - Sign in to Google Play 2 - Search for MSFocus Radio 3 - Click on icon 4 - Click Install 5 - Once app is downloaded locate on phone home page 6 - Click on MSFocus Radio app to listen Would you like to be able to learn more about MS wherever you are You can with MSFocus Radio Available on your computer or your mobile device you can get the latest news and information about MS 247. The goal of MSFocus Radio is to connect all members of the MS community to critical and timely information about multiple sclerosis. It strengthens the community by sharing interviews teleconferences audiobooks and articles from MSFocus magazine. These offerings are in addition to regular news updates and MSFocus Radio content. Sound advice MSFocus Radio is available around the world at www.msfocusradio.org or through the MSFocus Radio live-streaming apps available through Google Play and the Apple Store. Search for MSFocus or MSFocus Radio. Accessing the radio content on a mobile device is a straightforward process. Instructions to install MSFocus Radio app on iPhone and Android Visit Us at StaCoolVest.com or Call Toll Free 1-866-782-2665 The StaCool Under Vest uses high-quality durable materials and four easily replaceable ThermoPaks two front and two back to cool the body core comfortably. Each lightweight vest offers up to three hours of cooling per ThermoPak set and a spare set for a change out is included for total of eight ThermoPaks per vest. The StaCool Under Vest has an ergonomic design with a snug fit that contours your body for the ultimate in cooling comfort and can be worn under or over clothing. THE ONLY BODY-CORE COOLING SYSTEM DESIGNED SPECIFICALLY FOR MS PATIENTS STACOOL UNDERVEST THE MOST LIGHT-WEIGHT COMFORTABLE BODY COOLING SYSTEM AVAILABLE. STACOOL UNDERVEST LIGHT-WEIGHTMOSTTHE COOLINGBODYCOMFORTABLE AVAILABLE.SYSTEM y y g The StaCool Under Vest uses high-qualit two front and two back to cool the body hours of cooling per ThermoPak set and ThermoPaks per vest. The StaCool Und your body for the ultimate in cooling co T ty durable materials and four easily replaceable ThermoPaks y core comfortably. Each lightweight vest offers up to three d a spare set for a change out is included for total of eight er Vest has an ergonomic design with a sn t and can be womfort rn under or over clothing. for total of eight ing. ug fit that contours offers up to three eable ThermoPak g Please see Brief Summary of Important Product Information on next pages. 2015 Novartis 515 T-GYA-1315591 IMPORTANT SAFETY INFORMATION GILENYA may cause serious side effects such as monitored by a health care professional for at least 6 hours checked hourly. Youll get an ECG before and 6 hours after your seek immediate medical attention if you have any symptoms GILENYA without consulting with your doctor. Call your doctor if you miss 1 or more doses of GILENYAyou may need to repeat the 6-hour monitoring. number of white blood cells lymphocytes in your blood. This will usually go back to normal within 2 months of stopping GILENYA. Your doctor may do a blood test before you start GILENYA. GILENYA may decrease the way vaccines work in infection was seen with doses higher than the approved dose 0.5 mg. Two patients died who took higher-dose GILENYA 1.25 mg combined with high-dose steroids. Call your doctor test your vision before you start GILENYA 3 to 4 months after you start GILENYA and any time you notice vision changes. Vision problems may continue after macular edema has gone away. Your risk of macular edema may be higher if you have diabetes or have had an inammation of your eye uveitis. or a blind spot in the center of your vision sensitivity to light or unusually colored vision. syndrome has occurred rarely in patients taking GILENYA. or weakness. Call your doctor right away if you have trouble breathing. liver before you start GILENYA. Call your doctor right away turn yellow. during treatment. GILENYA may harm your unborn baby. Talk to your doctor if you are pregnant or planning to become pregnant. Women who can become pregnant should use effective birth control if GILENYA passes into breast milk. A pregnancy registry is available for women who become pregnant during GILENYA www.gilenyapregnancyregistry.com. you had or now have an irregular or abnormal heartbeat heart taking medicines that lower your immune system eye problems diabetes breathing or liver problems or uncontrolled high blood pressure. Also tell your doctor if you have had chicken pox or have received the chicken pox vaccine. Your doctor chicken pox vaccine and wait 1 month before starting GILENYA. nearest hospital emergency room right away. Tell your doctor about all the medicines you take or have your doctor if you take medicines that affect your immune past. Tell your doctor if you have been vaccinated within 1 month before you start taking GILENYA. You should not get GILENYA and for at least 2 months after stopping GILENYA treatment. You are encouraged to report negative side effects of Please see additional Important Safety Information on previous page. GILENYA is a registered trademark of Novartis AG. MEDICATION GUIDE GILENYA je-LEN-yah fingolimod capsules Read this Medication Guide before you start using GILENYA and each time you get a refill. There may be new information. This information does not take the place of talking with your doctor about your health problem or treatment. What is the most important information I should know about GILENYA GILENYA may cause serious side effects including 1. Slow heart rate bradycardia or bradyarrhythmia when you start taking GILENYA. GILENYA can cause your heart rate to slow down especially after you take your first dose. You will have a test to check the electrical activity of your heart ECG before you take your first dose of GILENYA. You will be observed by a healthcare professional for at least 6 hours after you take your first dose of GILENYA. After you take your first dose of GILENYA hour. see if you have any serious side effects. If your heart rate slows down too much you may have symptoms such as dizziness tiredness feeling like your heart is beating slowly or skipping beats will usually happen during the first 6 hours after your first dose of GILENYA. Symptoms can happen up to 24 hours after you take your first GILENYA dose. have another ECG. If your ECG shows any heart problems or if your heart rate is still too low or continues to decrease you will continue to be observed. of GILENYA especially those that require treatment with other medicines you will stay in the medical facility to be observed overnight. You will also be observed for any serious side effects for at least 6 hours after you take your second dose of GILENYA the next day. taking certain types of medicines that can affect your heart you will be observed overnight after you take your first dose of GILENYA. Your slow heart rate will usually return to normal within 1 month after you start taking GILENYA. Call your doctor or go to the nearest hospital emergency room right away if you have any symptoms of a slow heart rate. If you miss 1 or more doses of GILENYA you may need to be observed by a healthcare professional when you take your next dose. Call your doctor if you miss a dose of GILENYA. See How should I take GILENYA 2. Infections. GILENYA can increase your risk of serious infections and decrease the way vaccines work in your body to prevent certain diseases especially the chicken pox vaccine. GILENYA lowers the number of white blood cells lymphocytes in your blood. This will usually go back to normal within 2 months of stopping treatment. Your doctor may do a blood test before you start taking GILENYA. Call your doctor right away if you have any of these symptoms of an infection 3. A problem with your vision called macular edema. Macu- lar edema can cause some of the same vision symptoms as an MS attack optic neuritis. You may not notice any symptoms with macular edema. If macular edema hap- pens it usually starts in the first 3 to 4 months after you start taking GILENYA. Your doctor should test your vision before you start taking GILENYA and 3 to 4 months after you start taking GILENYA or any time you notice vision changes during treatment with GILENYA. Your risk of mac- ular edema may be higher if you have diabetes or have had an inflammation of your eye called uveitis. Call your doctor right away if you have any of the following What is GILENYA GILENYA is a prescription medicine used to treat relapsing forms of multiple sclerosis MS in adults. GILENYA can decrease the number of MS flare-ups relapses. GILENYA does not cure MS but it can help slow down the physical problems that MS causes. It is not known if GILENYA is safe and effective in children under 18 years of age. Who should not take GILENYA Do not take GILENYA if you ing stroke or certain types of heart failure in the last 6 months arrhythmia including patients in whom a heart finding called prolonged QT is seen on ECG before starting GILENYA If any of the above situations apply to you tell your doctor. What should I tell my doctor before taking GILENYA Before you take GILENYA tell your doctor about all your medical conditions including if you had or now have due to a disease or taking medicines that lower your immune system. Tell your doctor if you have had chicken pox or have received the vaccine for chicken pox. Your doctor may do a blood test for chicken pox virus. You may need to get the full course of the vaccine for chicken pox and then wait 1 month before you start taking GILENYA. called uveitis. harm your unborn baby. Talk to your doctor if you are pregnant or are planning to become pregnant. Tell your doctor right away if you become pregnant while taking GILENYA or if you become pregnant within 2 months after you stop taking GILENYA. If you are a female who can become pregnant you should use effective birth control during your treatment with GILENYA and for at least 2 months after you stop taking GILENYA. Pregnancy Registry There is a registry for women who become pregnant during treatment with GILENYA. If you become pregnant while taking GILENYA talk to your doctor about registering with the GILENYA Preg- nancy Registry. The purpose of this registry is to collect information about your health and your babys health. For more information contact the GILENYA Pregnancy Registry by calling Outcome at 1-877-598-7237 by sending an email to gproutcome.com or go to www.gilenyapregnancyregistry.com. You should not do both. Tell your doctor about all the medicines you take or have recently taken including prescription and over-the-counter medicines vitamins and herbal supplements. Especially tell past. with you to show your doctor and pharmacist when you get a new medicine. Using GILENYA and other medicines together may affect each other causing serious side effects. tor if you have been vaccinated within 1 month before you given during GILENYA treatment. How should I take GILENYA least 6 hours after your first dose of GILENYA. See What is the most important information I should know about GILENYA the nearest hospital emergency room right away. doctor first. GILENYA. You may need to be observed by a healthcare dose. If you need to be observed by a healthcare profes- have hourly pulse and blood pressure measurements after heart you will be observed overnight by a healthcare pro- GILENYA. GILENYA especially those that require treatment with other medicines you will stay in the medical facility to be observed overnight. If you were observed overnight you will also be observed for any serious side effects for at See What is the most important information I should know about GILENYA What are possible side effects of GILENYA GILENYA can cause serious side effects. See What is the most important information I should know about GILENYA Serious side effects include swelling and narrowing of the blood vessels in your brain. A condition called PRES Posterior reversible encephalopathy syndrome has occurred rarely in away if you have any of the following symptoms sudden headache loss of vision confusion seizures breathing problems. you have trouble breathing. liver problems. GILENYA may cause liver problems. Your have any of the following symptoms of liver problems nausea tiredness vomiting stomach pain your eyes turn yellow loss of appetite that does not go away. doctor for medical advice about side effects. You may report How do I store GILENYA dry place. General information about GILENYA Medicines are sometimes prescribed for purposes other than GILENYA to other people even if they have the same symp- toms you have. It may harm them. for information about GILENYA that is written for healthcare professionals. For more information go to www.pharma.US.Novartis.com or call 1-888-669-6682. What are the ingredients in GILENYA Active ingredient fingolimod Inactive ingredients gelatin magnesium stearate mannitol This Medication Guide has been approved by the U.S. Food and Drug Administration. Manufactured by Novartis Pharma Stein AG Stein Switzerland Assistive Technology for Walking Your Problem Foot drop reduced confidence while walking reduced walking speed risk of falling while walking. AT Solution STEP 400 www.dropfoottherapy.com Approximate Cost 2400 Description The Step 400 is a battery-operated functional electrical stimulator that helps reduce foot drop. Central nervous system injuries often cause a gait disorder called Foot Drop which is the inability to raise the foot while walking therefore resulting in dragging of the foot instability and increased effort during gait. Electrical stimulation has been used safely in rehabilitation for decades. There is an abundant amount of research supporting the use of FES as a treatment option for foot drop. Unfortunately it has been inaccessible because of the bulkiness of the equipment and the grave costs. The Step 400 is a modern FES device that delivers safe low-level electrical pulses to the peroneal nerve which controls foot drop. The Step 400 intelligently raises the foot at the appropriate phase of walking therefore increasing patient safety speed and confidence when walking. Assistive Technology for Voice Your Problem Low vocal volume fatigue when communicating over time vocal projection. AT Solution ChatterVox www.chattervox.com Approximate Cost 200-300 Description The ChatterVox is an affordable and easy-to-use personal portable voice amplifier. With the ability to boost your volume by as much as 18 decibels this small amplifier and speaker uses a rechargeable battery and comes in a stylish black fanny pack. With the choice of a traditional headset microphone light weight collar microphone or a small pencil microphone the ChatterVox can be used daily or just as needed i.e. when giving a lecture or speech when speaking in an noisy restaurant or store or only during times of high fatigue. 13MSFocus Summer 2015 Innovations in Assistive Technology Budget-Friendly Assistive Technology Products for Individuals with MS By Marissa A. Barrera MS MPhil MSCS CCC-SLP Teresa Biber LoMonte MS CCC-SLP and Michaela Medved MA CCC-SLP Assistive technology products are designed to provide additional accessibility to individuals who have physical speech hearing or cognitive difficulties impairments and disabilities. The term assistive technology or adaptive technology is a broad term that encompasses numerous assistive adaptive and rehabilitative devices. The use of AT in the home education and work environment is protected under Sections 504 and 508 of the Americans with Disabilities Act and the Individuals with Disabilities Education Act. If you or your loved one has difficulty walking speaking communicating or swallowing then here are several AT products I recommend in my practice similar products are available on the market. Assistive Technology for Cognition Assistive technology for cognition is an increasingly popular area of technology that supplements and assists cognitive processes such as focus attention memory organization management planning and sequencing of eventsactivities. Your Problem Difficulty remembering to take medications events birthdays and appointments. Limited fine motor skills unable to use pen and paper to generate and organize to-do lists and errands. AT Solution Asana asana.com WorkBoard www.workboard.com Approximate Cost Website is free iPhoneiPad App is free Description Asana is a free website and Apple app that centrally organizes all aspects of your life. Known as the most versatile project management program on the market Asana is essentially a highly customizable to-do list with features that can easily organize projects events and tasks big or small. Workboard is used by many of my patients who are in school and the workforce and have difficulty remembering events andor being organized. Some of the helpful features of Workboard functions include minimizing typing by using keyboard shortcuts the ability to follow tasks or projects in a colored coded fashion makes it easy to share to-do lists with others assigndelegate tasks to individuals in your support network and automatically receive email notifications politely reminding you of upcoming events and tasks. Visit their website to watch one of their excellent short educational videos. Assistive Technology for Swallowing Assistive and adaptive technology for swallowing is an often under-recognized area of specialty products that can significantly improve safety when eating promote mealtime independence and improve nutritional status. Problem Difficulty swallowing coughing or choking on food or liquids slow eating wet vocal quality during or after a meal. AT Solution Guardian NMES Therapy by Spectramed www.spectramedonline.com Approximate Cost 827 Description Since the development of a pill for MS individuals with MS now more than ever need to monitor the safety of their swallowing. Dysphagia is the medical term used to describe difficulty swallowing and is believed to occur in 50 to 55 percent of individuals with MS. If you or a loved one experiences food going down the wrong pipe difficulty controlling food or saliva in your mouth or find food in your cheeks after youre done eating then Guardian Therapy by Spectramed may be your solution. A fundamentally different approach for the treatment of dysphagia Guardian Therapy uses neuromuscular electrical stimulation to promote improved strength timing and re-education of swallowing musculature. Guardian Therapy is a noninvasive 14MSFocus Summer 2015 MSFocus Summer 201515 treatment administered by a certified speech-language pathologist that utilizes a small portable stimulator that generates customizable electrical pulses. These pulses flow through a wire to a pair of small electrodes placed under your chin. The electrical current passes into the body and causes an electrical reaction in the motor nerves resulting in a muscle contraction. Treatment sessions last only 30 minutes and use of Guardian Therapy can prevent muscle disuse atrophy promote muscle re-education strengthen weak swallowing muscles reduce the occurrence of aspiration and increase the speed of swallowing. This highly effective treatment technique is safe affordable and can prevent the occurrence of deadly pneumonia. Call 800-643-1917 to learn more about availability of Guardian Therapy in your area. Have questions RememberAT should always promote greater independence by providing technological enhancement and support. If you have questions about the role of assistive technology in walking speech language and swallowing as it relates to MS or would like to know more about the featured products contact Marissa at 212-453-0036 or email at MBarreranyaspire.com. You can visit www.nyneuroslp.com or www.NYASPIRE.com Editors note The opinions in this article are solely that of the authors. The MSF does not advocate or endorse any particular product. For specific advice consult your healthcare professional. 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 MSFocus Summer 201516 Teen is Taking on MS By Marianly H. Primmer It started with bad headaches then nausea. Angie Leary was a junior at Western High School when doctors told her she was suffering from migraines. Nonetheless she continued to plow through the school year. Angie is used to having a lot on her plate. Shes a natural overachiever. She also holds three leader- ship positions in school and has been practicing karate for 14 years. Angie said at first she didnt think anything of the symptoms. Then things got worse. A few weeks later a pediatric neuro- logist diagnosed her with ADEM acute disseminated encephalomyelitis a rare autoimmune disease characterized by a brief attack of swelling in the brain and spinal cord a condition that can mimic MS. The 17-year-old said she continued to dismiss the symptoms I started getting random muscle spasmsrandom nerve pain. Then during the summer Angie took part in her schools senior tradition of painting classmates names on a median in the school parking lot. She and other students painted in the sweltering heat in middle of the day. After two hours of sweating under the hot South Florida sun Angie could no longer ignore her fatigue. I knew something was wrong. Angie was dizzy and nauseous but she didnt tell anyone. Instead she pushed herself and painted for two more hours until she finished the project. Its something she laughs about today because at the time she had no idea of the seriousness of her condition. She wasnt capable of driving herself home from school that after- noon. Instead her parents drove her to the ER and she was admitted to the hospital. Doctors ordered MRIs and a spinal tap. During the hospital stay the night before what would have been her first day of schoolAngie said she remembers lying in a hospital bed resting with her eyes closed. She appeared to be asleep when she heard a neurologist telling her mom she has relapsing-remitting multiple sclerosis. I just heard my mom crying.Angie kept her eyes closed and pretended sleep. If I didnt open my eyes it wasnt real. The teenager couldnt help but think the doctors were wrong. I was thinking MS was a disease for older people. The diagnosis became real for Angie a couple of months later when she was prescribed her first medication for neuro- pathic pain an injection she gives herself three times per week.I worried I wouldnt be able to walk or have childrenAngie said. Nevertheless she was determined to manage her MS symptoms and continue living at full speed. But soon the honor student was forced to make some changes I had to say no to people because I didnt have the energy to go out. One night out for Angie means resting for the next three days. Shes also forced to turn down beach trips with her friends to avoid the heat. MS also affects her education. My medical diagnosis decided where Im MSFocus Summer 201517 going to school Angie said she was accepted to Florida State in Tallahassee but that would mean nearly an eight-hour drive making it difficult in case of an emergency. Although FSU was her first choice she and her family decided a school in Orlando which is three hours away from her home would be a better choice. Im excited but also super nervous. Sometimes I feel like Im thinking of other things instead of enjoying senior year. Angie sometimes feels groggy or dizzy at school but says she doesnt tell her friends. She says she knows other people have bigger health problems. Instead she is trying to make the most of her senior year.Angie participated in her schools mock pageant. She had the energy to attend every rehearsal dance and practice each day after school and on Saturdays.Thats when Angie had an a-ha moment You cant base your life on stuff that hasnt happened.Anyone can get into a car accident and not be able to walk. Instead of worrying now she takes things day-by-day I appreciate things more. The basic things I appreciate walking. I appreciate all the healthy moments. She also appreciates the moments with family. She has always been close to her family but now she her parents and two younger brothers are even closer. Today she is taking two sets of medications. She will be tested for her black belt soon. Angie is also looking forward to college where she plans to double major in psychology and criminal justice and one day work in forensic psychology. Although not exactly at full speedAngie is still determined to live her own life. I have MS but MS does not define me. 18MSFocus Summer 2015 In Ken Kesseys novel One Flew Over the Cuckoos Nest and the movie adaptation starring Jack Nicholson Randle Patrick McMurphy becomes a savior for the inmates of an insane asylum in Oregon. He built up a sense of self-fulfillment against societal norms and inspired the patients of the ward to live their own lives not the lives set up by expectations symbolized by the passive-aggressive Nurse Ratched. There is one specific moment in the novel and the moviewhen McMurphy discovers many of the patients admit themselves into the asylum even though they hate the setting. A shocked McMurphy replies What do you think you are for Chrissake crazy or somethin Well youre not Youre not Youre no crazier than the average ahole out walkin around on the streets and thats it. This was the turning point of the novel. The patients eventually think of the label of being insane as sort of a power an instrument to change the world all out of societal perceptions. Having an illness is a power if one so chooses to use it that way. I believe having multiple sclerosis is the same concept. I was diagnosed the Sunday before my senior year of high school. Im not going to lie I felt as if I checked myself into the self-pity of that same Oregon ward. I felt the societal false belief that my life would be controlled in the same fashion Nurse Ratched controls her patients and I had no say. I felt as if my own body placed me into this imprisonment. A side of me a side like R.P. McMurphy did not stand for this concept that multiple sclerosis will control my life. It was my senior year of high school and I wanted to experience everything that went along with being a senior. My high school Western High School hosts an annual mock-beauty pageant called Mr.Western in order to raise funds for prom.Twenty-four seniors are selected to be Mr. Western contestants and escorts. Before spring break I developed my McMurphy confidence and decided to audition to be an escort in Mr. Western a position I understood includes everyday afterschool rehearsals for two to three hoursdancingand other physical activities. I was honored to be selected as an escort but I understood the difficulties my newly- diagnosed multiple sclerosis may create. It was a struggle but I am very proud to say I went to every rehearsal and performed my best a feat with multiple sclerosis. The night of Mr. Western finally came. It was sold out with more than 700 people in attendance. The mock beauty pageant included swimwear casual wear formal To Beat MS Embrace Your Inner McMurphy By Angelina Leary Warner Home Video 19MSFocus Summer 2015 wear and talent portions. Some of the acts included Rocky Horror Picture Show synchronized swimming with a blue mat theYESdanceand many other ridiculous performances and showcases. While getting ready for the next section I remember someone yelling for me to get on the stage where my senior class officers were already there introducing themselves. I remember getting tears in my eyes when they explained what multiple sclerosis was. I cried more tears of joy when I got on stage and saw a check for 2000 dollars as a donation to the Multiple Sclerosis Foundation. It was an incredible deed my peers giving back to the community. I felt humbled and grateful. And in that moment I realized what multiple sclerosis truly is something I must live with but will never be controlled by. Multiple sclerosis is my personal Nurse Ratched. I will overcome it. While this is a personal win against multiple sclerosis I must thank everyone who made it possible Lorianne Turcotte Steven Triana and Daniel Bonnett for putting the show together and creating the ability to have my peers donate to the MSF Western High Schools Senior Class Officers for keeping the hype up and allowing me to defeat my disease everyone else included in Mr. Western for being able the raise the funds for prom and the MSF for providing quality of life tools for MS patients. Thank you all. At the end of One Flew Over the Cuckoos Nest Randle Patrick McMurphys impression of free-will and loving ones life allowed the patients of the ward to free themselves they were able to live the life they wished. I believe everyone has their own personal Nurse Ratched one must allow their McMurphy side to take over and not be submissive to lifes obstacles. Mr. Western is just one battle won against Nurse Ratched. Many more battles will be won and I will live the life I wish. Partner with the When you shop at AmazonSmile Amazon will donate to the MSF MSFocus Summer 201524 Jessica Petroff Indianapolis Ind. A wifemotherdaughter sister and friend Jessica has lived with MS for nearly 17 years but was only diagnosed 12 1 2 years ago. Living with the symptoms daily no longer with remissions now she doesnt take good days for granted. Describing herself as a go to person for anyone with questions about MS she wants to give back to her community. Education is key for Jessica. By talking about her personal experience living with the disease good bad and ugly she wants to make a point of how important it is for people to take care of themselves and get on disease-modifying drugs learn about the disease and advocate for themselves. She also feels it is important to advocate for research and finding a cure. Each person will have their own course and no two people with MS are the same. It is so important not to compare yourself with someone else who has MS she said. Patricia Rothmann Bismarck N.D. For Patricia MS has long been a family affair. Her father grandmother and cousin had the disease prior to her diagnosis. As a result she was a faithful participant in giving financially and promoting awareness in the workplace. Since being diagnosed with the disease she went from a very active lifestyle to one that is slower paced. That brought her back to basics focusing on what she can do and using her experiences to encourage others to look past their fatigue pain and disappoint- ments. She finds her current participation in a physical therapy program with students at a local university very rewarding. She is able to share the realities of living with MS rebounding from relapses and innovative approaches in treatment. The message she wants to send is that it is important to encourage others with MS to focus on their entire being physical emotional and spiritual. We are not just physical beings Patricia said. And because of that we need to care for every part of what makes us who we are. Kathy Lynn McCane Joplin Mo. After seven years of mysterious symptoms Kathy was diagnosed in July of 1999. Or rather misdiagnosed with Guillian- Barre Syndrome at first. Her doctor told her to learn to live with it as nothing could be done. She had worked since she MSFocus Summer 201525 was 15 years old and was working as a manager in a physicians office when she was correctly diagnosed with MS. She then changed jobs and worked as a life guidance programs specialist working with Alzheimers dementia patients. While she no longer works outside she now helps others with MS by leading two support groups. Since being diagnosed sharing MS information has been a passion wherever she goes. As an MSF-affiliated support group leader she has been able to reach many. As an MSF ambassador she hopes to have an opportunity to reach out to the greater community. She notes that many fellow MSers are not aware of the support and information available outside the doctors office. In the future she hopes to spread the word to other cities neurology offices and clinics in Missouri. Kathy said We need you to hear and understand us Marcy Canavan Accokeek Md. When it comes to the subjectsofmultiplesclerosis and government Marcy has long experience with both. A wife and mother she has been living with progressive- relapsing MS since 1999 and retired on disability in 2000. Her family has a history of autoimmune diseases and one of her daughters also has MS. Her career in government has included 12 years in Prince Georges County Maryland as an elected official 10 of them on the board of education. She also served as a hearing examiner after retiring from the board and currently serves on the Maryland Commission on Judicial Disabilities. While still independent and leading a productive life she is putting her skills which include public speaking testimony and advocacy for disability issues to use for people with MS.There are many things MS patients can do to help themselves or get appropriate help and too often they dont take advantage of available resources for many reasons Marcy said. I would like to get involved in helping in this area. Debbie Hudock Hunker Pa. A wife and mother of two Debbie Hudock has been living with MS for 21 years. During that time the disease has taught her many different things from learning how to cope with having MS in the beginning to what drugs to take to make steroid treatments easier along with the understanding that you have no control over how people act because you have MS. She said The only thing you can control is how you react to them. It is important to Debbie to make a difference and show her children how crucial it is to never give up. As an ambassador she has two messages she wants to send. First she wants people to see that you can live with MS and keep a positive attitude. Second that funding is necessary for programs that help people with MS stay strong physically and mentally. I try not to let it change my life but to understand that this is the path of what I have and not give in to it she said. I am not okay with just having multiple sclerosis. I have this for a reason and I want to do some good with it Kathleen Crudele Cranston R.I. I once asked my husband why me Kathleen said. And he said why not And with that I decided to take a positive spin on my diagnosis. A mother of two Kathleen was diagnosed in June 2009 just as much of her life was going well she had a great job her husband was retiring and her second daughter graduated college. She had to resign from her job and it was a long process of physical therapy to go from a wheelchair to a cane. And while she lost some friends along the way she found her new MS family. When she was diagnosed Kathleen reached out to agencies including the MSF for information about the disease. She is a member of a local support group. She also speaks to physical therapy patients about her experience and was instrumental in getting the Rhode Island Rehab Centers and Back on Track in Massachusetts MS-certified. I would like to inspire others that there is life beyond MS she said. Bringing valuable information to those afflicted with this disease will help the MSF reach more needy people and provide me with a purpose that helps me battle the challenges of MS. Charlene Williams Virginia Beach Va. Charlene was diagnosed with MS in 2005 after going blind in one eye because of optic neuritis. And while she struggles with fatigue the mother of two has learned to pace herself. In the past four years she lost mobility in both of her legs twice and has been on three different drug therapies. Charlenes main source for support is her daughter who is her health care proxy and friends. She was teaching when she was diagnosed with MS. Now on disability she just started substitute teaching three days a week. Her strategies for staying positive include attending support groups and MS conferences volunteering for MS causes peer support building a support team of family friends and caregivers and creating good rapport with her doctors. For Charlene the most important message is that individuals with MS need to be informed and know how to advocate for themselves. Twenty-five people with MS in the same room will have different symptoms and experiences she said. Knowing how to talk to their doctors and what questions to ask can assist them with informing their caregivers and support system which will then give them a better quality of life. 26MSFocus Summer 2015 Explore some of the most exciting and scenic areas in North America onboard Celebrity Cruise Lines Solstice while attending one of our many motivating educating and empowering programs presented by MS experts. Take the opportunity to visit with old friends and make new ones as we navigate the Tracy Arm Fjord. See the Alaskan wildlife as we visit Juneau. In Skagway take a ride on the White Pass and Yukon Route Railway. Stroll through Ketchikan Alaskas first city and the salmon capital of the world. Book early to assure a statroom of choice. For more information or to make a reservation contact Gabriela Aragon at 888-408-4129 or 954-322-1030 In order to participate in the Multiple Sclerosis Foundations program aboard the ship your stateroom must be booked through the MSF at the above numbers. 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 30MSFocus Summer 2015 By Alissa Ayden The Multiple Sclerosis Foundation Independent Support Group Network is growing Please welcome the following newly-affiliated groups Myelin Matters Estill County MS Support Group Irvine Ky. Myelin Matters Madison County MS Support Group Richmond Ky. Our Lives With MS Social Group Wellington Fla. Pediatric MS Telephone Support Group National Toll-free 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. We are thrilled to announce a brand new national telephone support group dedicated to Pediatric MS. Elin Phillips president and founder of the Pediatric Multiple Sclerosis Alliance will serve as the groups leader and the MSF will be providing the monthly toll-free telephone conference line. The Pediatric MS Telephone Support Group came about as a result of a conversation I had with Sue Robertson a mom whose teen has MS. She started the Pediatric MS Support Group in Warner Robins Ga. as part of the MSFs Independent Support Group Network earlier this year. However she wanted to figure out a way to reach even more families affected by MS throughout the country. I shared her sentiment and suggested that a national telephone support group might be our best bet. Many phone calls brainstorming sessions telephone conference line tests and emails later a dream has actually become reality. Im so glad to be able to share this story because it shows that reaching out truly can make a difference. Sometimes one phone call or one referral is all it takes. If Sue hadnt picked up the phone and called me then none of this would have happened. I would also like to extend my thanks to MSF-affiliated Support Group Leader Phyllis Jacks for referring Sue to me and the PMSA for this exciting collaboration. We are all stronger when we work together If you are interested in applying to start or affiliate a support group please contact me at 888-MSFOCUS 673-6287 or alissamsfocus.org. MSFocus Summer 201531 BRIGHTER TOMORROW GRANT PROGRAM Making Dreams Come True Each year the MSF makes dreams come true for individuals with MS through the Brighter Tomorrow Grant Program. The goal of this national program is to provide goods or services to improve quality of life for those living with MS by enhancing safety self-sufficiency comfort or well-being. In the past recipients of the Brighter Tomorrow Grant have received adaptive sports equipment appliances televisions furniture tires hobby supplies musical instruments partial scholarships for the MSF Cruise for a Cause and more. Those who applied in the past and were not grant recipients are encouraged to reapply. Previous recipients of the Brighter Tomorrow Grant are ineligible.Applications are confidential and will be reviewed by the grant committee. Recipients will be notified in December. OFFICIAL GUIDELINES TO APPLY Applicants are asked to provide basic personal and financial information along with a brief essay of one page or less to describe their wish and how the grant might help them to have A Brighter Tomorrow. Grant applicants must meet the following eligibility criteria Applicant must be diagnosed with MS or be the parent of a minor child with MS. Applicant must be over the age of 18. Applicant must have no existing financial net such as Medicaid or private insurance to cover the request. Applicant grants the MSF the right to use their name and photograph for promotional purposes associated with this grant. Applicant must agree to sign a waiver of liability. Applicant must be a legal resident of the United States. Application must be postmarkedtime-stamped on or before September 1st. Request must be for specific goods or services. If the cost of the request exceeds 1000 dollars the application will automatically be disqualified. Requests for cash medications or items currently available through the MSF Assistive Technology Cooling Computer or Health and Wellness programs will not be considered. Send your completed application to Multiple Sclerosis Foundation BTG Committee 6520 North Andrews Ave. Ft. Lauderdale FL 33309 Applications can also be submitted online at www.msfocus.org. I certify that the facts contained in this application are true and complete to the best of my knowledge and I authorize verification of all statements contained herein. SIGNATURE DATE NAME _______________________________________________________________ ADDRESS ____________________________________________________________ CITY____________________ STATE _____ ZIP ________ COUNTY____________ DAY PHONE ____________________ ALTERNATE PHONE ___________________ E-MAIL ADDRESS __________________________ DATE OF BIRTH ___________ PHYSICIANS NAME ________________________ PHYSICIANS PHONE _______________________ DATE DIAGNOSED_________ MONTHLY GROSS INCOME ________________ MONTHLY EXPENSES _____________________ REQUESTED ITEM ___________________________________________________ ESTIMATED COST OF ITEM _____________________ May we leave a detailed message about this application on your voicemail or with another household member if you are not available II Yes II No BRIGHTER TOMORROW GRANT In one page or less explain how the Brighter Tomorrow Grant of no more than 1000 in goods or services would help you have a brighter tomorrow. Additional paper may be used if needed not to exceed one page. Annual Caregivers Night Out Contest GIVE THANKS TO YOUR CAREGIVER Has your spouse child relative friend or neighbor gone above and beyond the call of duty to help you Then honor them this November during National Family Caregivers Month by sharing your story. Keep in mind that we seek stories with heart not flawless grammar or perfect penmanship Winners will receive dinner for two at a restaurant of their choice and their story will be published in the winter issue of MSFocus. Name Address City State Zip County Day Phone Alternate Phone Email address In 100 words or less tell us what makes your caregiver special and how he or she has made a difference in your life. Additional paper may be used if necessary. Signature ________________________________________ Date _________________ Submissions will be accepted from July 15th through September 1st. Application can be faxed to 954-351-0630 or mailed to Caregivers Night Out Contest Multiple Sclerosis Foundation 6520 N. Andrews Ave Ft. Lauderdale FL 33309. This information can also be emailed to homecaremsfocus.org. 37MSFocus Summer 2015 Don Anderson Currently balance is not an issue but when it was I found trekking poles work much better than a cane. Standard canes work great for leg muscle weakness and tri-canes are good for weakness and balance. But if its just balance you need help with I find trekking poles work best. Plus they have some really cool options like telescoping anti-shock light weight or hammer handles so it can be used a hiking pole or cane. Also because they are also used by the sporting community the cost and selection are great. James Sara Taylor My TENS massager unit. It disrupts the pain signal and it does TENS transcutaneous electrical nerve stimulation therapy. But it also works out my muscles on the days I cant. It has helped me by making my muscles stronger. It also helps with my spasticity and migraines. I cant let anyone give me a massage. Im so tight it hurts. Only my unit can. It doesnt matter where I hurt. I use the trigger point therapy mode. I locate my symptom and find it on the chart and place my pads accordingly.This is just one of its 16 modes. I cant live without it. Jessica Anderson I have a collapsible cane I carry in my purse at all times in case I feel wobbly and a selection of eye patches in case my double vision comes back. I rarely use them but knowing they are there and I am always prepared keeps my confidence up. Becky Schaar I just had a technology assistance evaluation at CAPTEC in Washington D.C. The recommendations are for a keyboard holder that pulls up to me larger monitor and software that enable enlarged print and line tracking on work documents and Dragon software. There is a phone adaptor that I can adjust volume and even the bass treble etc. to help with audio. Im waiting for approval and I am very excited about not putting my face right up to my computer and squinting with one eye.And thats with corrected vision Shawn Duffy My date book online for my phone. I always have it. I quickly can type in notes about the event before and after. Great to look at in different formats so I dont overdo it. Serves as a great tool if I need to refer back to something. Facebook Feedback is your chance to share your experiences related to topics covered in the MSFocus. Like our Facebook page at www.facebook.comMultipleSclerosisFoundation and watch for our next Facebook Feedback post. Our question for this edition was What types of assistive devices equipment or technology help you manage your MS and how is it helping you Connect with us. Share your thoughts and insights with the MS community on our Facebook pages. Like us at www.facebook.comMultipleSclerosisFoundation and www.facebook.comgroupsmsfocus. MSFocus Summer 201538 When Derrick Lee associate director of Quality of Life Programs and Services joined the MSF in February of 1999 there wasnt an Assistive Technology program. The MSF had a loan closet for durable medical equipment and would loan items out as needed. However the process was inefficient and made it difficult to serve those outside the immediate area so the Foundation started the Equipment program to help purchase durable medical equipment for those in need. Over time the scope broadened beyond just medical equipment and that program developed into todays Assistive Technology program. The MSF Assistive Technology program provides durable medical equipment and a wide range of aids for daily living for the MS community. It has grown from its beginnings with two caseworkers and a budget of 20000 a year to a staff of nine and an 180000 a year budget. The program educates and assists individuals with MS across the country about the many AT options available and how to access them. The AT program may provide an AT product help locate a product or help with funding for a wide range of devices that allow individuals with MS to function more independently in activities of daily living as well as recreational educational and vocational activities. Requests range from home and vehicle air conditioning wheelchairs walkers and ramps to standing wheelchairs. The Assistive Technology program has nine different categories Aids for Daily Living Covers every- thing from a reacher and pill boxes to special eating utensils. Communication Devices Recorders and voice recognition software are among the items covered. Computers and Computer Aids While desktop computers are not covered laptops and all-in-one computers are as well as specialized computers for the severely disabled. The program also covers computer repair and computer training. However it doesnt include tablets or Apple computers. Environmental Control Systems Covers security systems and video monitoring systems that allow you to control your house. A rc hi te ct ura l an d Ve hicl e Modifications Door widening and sink lowering in homes and ramps vehicle hitches for scooters and hand controls for vehicles. Orthotics Devices that help with foot drop and walking are covered by this program. Seating Positioning and Mobility Devices Wheelchairs. Aids for Vision and Hearing Eye- glasses contacts and exams hearing aids. Visit Our Website At www.HeatReliefDepot.com Receive a 10 Discount Use Coupon Code MSF Or Call Us Toll Free 877-879-1450 Warming Vests Hand Foot Warmers Warming Cushions Herbal Wraps Heat Packs More Cooling Vests Neck Wrist Coolers Fans Sunscreens Hats Caps Visors Misting Products More Your Place For Personal Cooling Warming Products HEAT RELIEF DEPOT MSFocus Summer 201539 Cooling Aids Different types of cooling devices that have varying degrees of usage duration. The Computers and Computer Aids and Cooling Aids programs are in such demand that they now constitute their own sub-programs. With the exception of the Cooling Aids program the various sub-programs of the Assistive Technology Program accept requests all year long. If people need help they should call the Foundation no matter what the request is no request is too small or too big. If we cant finance a way to assist you were going to go and hound and fight for you and find resources for you. There may be other monies out there available to you and were going to work with whomever to try to find those resources for you Derrick said. One of the beneficiaries of the program is Tamara Martin of Amerherst Va. who was assisted through the program with bathroom modification in the spring of 2014. Because she is paralyzed on the left side Tamara is wheelchair- bound. Thanks to the AT program she can now easily maneuver around her bathroom and the fixtures are easily accessible. According to Tamara The house I live in was built by my grandparents. I was constantly falling in the bathtub and getting hurt. The tub was taken out and a shower was put in place as well as a handicap bar and a handicap toilet. The pedestal sink was replaced with a new sink that is lower for me and my power chair. It made 100 percent difference. Its a joy to assist people like Tamara Derrick said. And I get to work with an awesome staff that works really hard. I enjoy my job. Sixteen years later Im still here. The Application Process Applications for the MSF Assistive Technology Program are available online or through the mail. Applicants can go to MSFocus.org. Under the Programs and Activities tab they can select Assistive Technology. Applications can either be printed from or submitted on the web- site. If an application is submitted on the site the applicant will receive an email notifying their application was successfully submitted. Questions will be asked regarding symptoms level of disability income family support and assistance require- ments. This information helps the AT coordinator to assess the physical social emotional and cognitive needs of the patient. Financial status also plays a role in determining eligibility for the MSF Assistive Technology Program. Upon review the AT coordinator will determine what AT will be provided through the MSF or if a referral to another resource is needed. All equipment is ordered from a licensed medical equipment supplier. For more information on AT or to access these services call 888-MSFOCUS 888-673-6287. Or Call Us Toll Free 877-879-1450 40MSFocus Summer 2015 The ever-changing landscape of federal regulations medical technology and insurance coverage can make ones head spin. This column spotlights government resources available to qualifying people who have multiple sclerosis and other chronic illnesses. Benefits.gov Patients affected by multiple sclerosis can utilize an important website known as Benefits.gov formerly known as GovBenefits.gov. The website is easily accessible online. Its mission is to reduce the expense and difficulty of interacting with the government while increasing citizen access to government benefit information. Americans tax dollars fund programs designed to help those in need. Benefits.gov gives you an easy way to find funding training or other benefits available for you. Benefits.govs range includes 1000 programs represented by 17 federal partners. Prior to the launch of this site in 2002 citizens seeking government benefit information had to search through a maze of websites often unsuccessfully. There was no easy-to-use single source of benefit information to help citizens understand what vital programs they might be eligible for or how to apply. The core of Benefits.gov is a unique 10-minute pre-screening eligibility questionnaire evaluating a visitors situation based on their personal answers then matching those responses to an eligibility criteria for all 1000 programs. Disabled persons seniors parents and students would first want to take the time to input their personal data with the function called Benefit Finder. Then users would click on links to related information from affiliated partners. There are 21 categories of information such as child caresupport counseling disability assistance disaster relief energyliving assistance grants and fellowships healthcare housing insurance living assistance loans and repayments MedicaidMedicare and Social Security. In conjunction with its 17 partners Benefits.gov continuously expands its value to citizens and governmental agencies saving taxpayer dollars while improving the lives of millions of citizens in the process. To access Benefits.gov visit www.benefits.gov Let us know what you thought of this article Email your comments to editormsfocus.org or mail to the address on the back cover Attn MSFocus Letters Column. 42MSFocus Summer 2015 When you make a reservation at a hotel do you ask if they have a bathroom Do you ask if they have doors and lights in the rooms or even if there is an entrance Of course not. But put the word accessible before each of these items and you have the questions that I a disabled person must ask a hotel when making a reservation. Fortunately Congress saw the need for legislative action to protect the Disabled community. Just as the Civil Rights Law of 1964 prohibits discrimination based on race and religion the Americans with Disabilities Act prohibits discrimination based on disability and guarantees the right to full and equal access to places of public accommodation. Under the ADA an individual has a disability if she has a physical or mental impairment that substantially limits one or more major life activities. The law is enforced by individual lawsuits brought by disabled persons against hotels.I am disabled and committed to enforcing the ADA. These are my responsibilities I check into a hotel that is believed to be in violation of the ADA. I take pictures of the violations and get a bill proving that I stayed there. I make a reservation to return to the hotel. I send all the documents to my attorney and expert to file a lawsuit against the hotel. All of the steps in the prior paragraph are required by the ADA in order to have standing to sue. The law requires that you actually suffer the discrimination by being denied access to the services. It also requires you to have an intention to return to the hotel to avail yourself to the services offered. This is somewhat paradoxical because it requires you to want to return to a hotel you know to be inaccessible. That is the law. The initial phone call to a hotel is ironic. I ask do you have an accessible room with a roll-in shower. The reservationist answers no with an apologetic voice. I respond sincerely that its too bad. It is too bad for them In one of the cases there was a funny incident before one of the district court judges. The defense attorney questioned my purpose in checking into their hotel. He wanted to defeat my standing to sue by showing I had no reason for going to the hotel other than to be able to sue them. The law is divided as to whether a person has standing to sue if he has no reason for going to the hotel other than to correct the ADA violations. The issue is whether a disabled person can be a private attorney general and file a lawsuit for the benefit of the disabled community. This judge rebuked the defense attorney by pointing out that if Gov. Spitzer can check into a hotel with a prostitute why By Nelson M. Stern 43MSFocus Summer 2015 cant Mr. Stern do the same for this more noble purpose I am proud to report that in almost all of the cases the hotel entered a settlement agreement or consent decree to correct most of their violations. They also agreed to pay reasonable attorneys and expert fees. My procedure in every case is to have my expert and lawyer conduct an inspection of the hotel after the date negotiated for the completion of corrections to confirm compliance with our agreement. I am doing what I can to make the lives of the disabled a little less burdensome one hotel at a time. If you have questions call the Department of Justice at 800-514-0301. You can also go to the Accessibility Boards website at www.access-board.gov. Nelson Stern is a 51-year-old lawyer and father of three sons. He was diagnosed with multiple sclerosis in college. He works from his New York home and only handles cases against hotels under the Americans with Disabilities Act. He can be reached at Scooterlawyeraol.com. Pretty Waterproof Leak and Stain Resistant Panties. To deal with occasional or frequent Stress Incontinence Urgency Incontinence Over Active Bladder Heavy Menstrual Cycles Do you have Laugh Cough or Sneeze incontinence You Deserve the best Vv SkiVvys are Eco Friendly Wash and Dry. Made in the USA www.VvSkiVvys.com Enter Promo Code 4MSF2U To receive a discount and help MSF a portion of every sale will be given to the MSF Please help our cause... THE PRETTIEST PROTECTION YOULL EVER WEAR... 44MSFocus Summer 2015 Lessons From a Life With MS By Debra Ross Growing up we all have our own struggles mine just happened to be closely based around my neurological system. Most people have fond memories of childhood riding bikes and playing games. My memories were quite different. I spent most of my childhood trying to adapt to what most people would consider normal activities. I was nine years of age when this mysterious neurological illness struck me and at the time we did not know that it was in fact multiple sclerosis. I remember returning to school from summer vacation the excitement of beginning fourth grade and new teachers. We began filling out papers during spelling class. My hand was shaky and the pencil wouldnt stay on the paper. That was the beginning of doctor visits and running every test known to man at that time. The doctors were trying to figure out what was wrong with me. Every year it was the same doctors and the same tests. The neurological issue never progressed and they never figured out what it was. While they were trying to figure me out I had to learn to adapt and adjust to my physical mental and emotional challenges. To look at me you would never know that I wasnt a normal child. But if you were to ask me to do something as simple as write down my name or phone number you would see that I was anything but. It usually didnt take most children long to figure out I was different. Some didnt care that I was different. Some made fun of me. Some didnt care until others began to care that I was different. But thats just children in general. Everyone has experienced a little bit of this growing up right Not that this excuses the behavior. I was more disappointed in some of the teachers. I was not a welcome sight for some teachers. Usually having me in their class meant some form of special arrangements on their part. The disappointing factor for me was what some of them said to me their lack of encouragement. I remember in ninth grade that one of them even went so far as to say that I would never make it through high school or graduate. Guess what I graduated. I look back and can say that for me the lack of encouragement worked because it made me work that much harder to prove them wrong. Some of my neurological issues required adaptation or adjustments from the other parties involved. The realization was that there were some things and some jobs that I just couldnt do. 45MSFocus Summer 2015 At the age of 25 I was involved in a bad car accident that progressed my mysterious neurological issue to the point of diagnosis and that diagnosis was multiple sclerosis. I believe that this was one of the defining events of my life. When I was given that diagnosis I felt as if I was handed a death sentence. Most of my friends and family began treating me differently and I was bombarded with their thoughts and questions. They told me what I should do what I couldnt do and what was going to happen to me. The funny thing was that nothing had really changed except now they had a name for what I had been dealing with for 16 years. I was the same person but looking back I can see this as a good thing. It brought me to where I am today. After my diagnosis I fought hard. I think some people viewed it as denial on my part because I didnt want to hear about MS and the limitations or what was in store for me according to medical studies. I needed to keep my mind free of what the world was saying about MS so I could believe that I could rise above and overcome. I wasnt being nave. I knew my limits and I worked with them. My education as a personal trainer was handy. I had struggles and setbacks but I learned so much along the way. Thats a lot of what makes me so good at what I do now. Ive been there and I worked through it without any outside influences clouding my perception and judgment of what the outcome should be. Now I am able to help others without them having to go through the trial and error that I did. Throughout this whole process I developed an exercise program and breathing technique that benefits everyone but has a unique effect especially on people with neurological issues. I use these as well as other tools to help individuals find what works for them so that they can enjoy the life that they have been given. Debra Ross is a personal trainer in Colorado and author of the book OxyFlex She was diagnosed with MS at the age of 25 but has had MS since the age of 9. 46MSFocus Summer 2015 Forget Spiderman Batman and the Avengers. We offer you real heroes fighting multiple sclerosis every day and contributing to the larger MS community. As part of the 2015 National MS Education and Awareness Month and with your help the MSF set out to find them. And you came through. Dozens of worthy nominations were made in the MS Superhero Awards making it difficult to pick just three winners. In the end we had five winners in four categories two for MS Superhero Captain HealthcareAdvocate of Caliber and Amazing Ambassador which was added after the nominations were received. The winner in each category will receive an iPad. MS Superheroes assemble Advocates unite MS Superheroes Darlene Trotsky of Cedar City Utah Nominated by Diane Marrero Darlene Trotsky has dealt with her own experiences with MS by always striving to help others in our community with MS. More than 10 years ago she and a friend had an idea for a kind of support group that was social in nature. She arranged for a meeting place and once a month a few of us would meet visit eat lunch and share with each other. Often Darlene arranged informative speakers. Sometimes there were only six or seven of us but it was an enjoyable time. News of the MSF-affiliated Lunch Club spread and our numbers grew. We moved from a small room into the large dining room at Los Prados Country Club. We had more than 200 members with 40 to 60 attending each month and up to 110 at parties. For many of us going to the MS Lunch Club was a high point of the month a time to go out enjoy a good meal and connect and socialize with our MS family. Darlene was an important part of our exercise programs and was instrumental in finding new locations for our classes when we needed them. She is a real powerhouse in all aspects of MS in the Las Vegas community. She also had a relationship with the Cleveland Clinic and its programs and Dr. Timothy West which was beneficial for all of us. It was hard on all of us when Darlene had to relocate to Utah but she came back MSFocus Summer 201547 to Las Vegas for as long as she could. When a new leader appeared Darlene stepped in to help guide her and to make sure the Lunch Club would continue. In Utah her new home she is leading two MSF-affiliated support groups one in Cedar City and another in St. George. Stephanie Townsend Ayers of Tocca Ga. Nominated by Christopher Ayers My wife Stephanie Townsend Ayers was first diagnosed with MS around 15 years ago when she woke up one morning with optic neuritis. She deals with daily exhaustion pain and heat intolerance. Despite her symptoms Stephanie is a mother to our 10 children ages 8 to 29 a homeschool teacher a grandmother to three grandsons a foster mother an owner of an auction company an author and maker of baby quilts. My wife has homeschooled our 10 children since the oldest started school about 24 years ago. Regardless of how she has felt or how she feels she plans and teaches each day so our children will get a good education. All of our children who have desired to go to college have attended. We have two sons in the U.S. Marines. Despite daily pain and loss of energy Stephanie rarely if ever complains or slows down. She continues to run the auction company teach sew and write. She is currently working on another book and today she was making Easter dresses for our three youngest daughters. Advocate of Caliber Alan Thralls of Lutz Fla. Nominated by Holly Morris Caring for a person with MS is steady work. I was 19 and diagnosed with a neurodegenerative disease on Nov. 11 2013 my diagnosis of MS. I was scared and felt helpless. MS What was this My grandpa Alan Thralls has been there with me ever since riding front row next to me on this MS rollercoaster. He was asking the doctor questions I couldnt even bear to voice. The rest of my family was in denial unable to accept my diagnosis thinking my disease would perform some kind of magical disappearing act and vanish into thin air. It drove a wedge between my family and me. They didnt understand all my new-found symptoms. Not my grandfather it didnt scare him off one bit. If anything its brought him closer to me. Whether it was giving me shots of disease-modifying therapy every day or sitting in a cancer center with me every 28 days for four hours as I get my veins pumped with Tysabri. Every doctors visit every hospitalization he was there. And support groups when I began to fall into a black cloud of depression they helped me realize I wasnt the only one life this disease has affected. He has been there with me helping me in any way he can even if it meant it conflicted with something in his life. He remained by 48MSFocus Summer 2015 my side as I woke up in the hospital from my first seizure. MS has taken so many things from me but it will not take the love and support my grandfather has for me. Captain Healthcare Dr. Stephen Treon of Copperhill Tenn. Nominated by Twyla Cochran Dr. Treon goes above and beyond just being a doctor for me. I have had two fundraisers to benefit people with MS. Dr. Treon has showed up at both events. He took time off from his crazy schedule to talk on our local television station to explain what MS is. He did all this because I asked. The last fundraiser was a concert. He went to it to check on the singer who wasnt feeling well. He still makes house calls. He doesnt believe in a quick visit at his office. He will sit with me and explain to me everything I have a question on. Amazing MSF Ambassador Nick Marchesani of Glenwood N.J. Nominated by Andrea Novak Gloria Loops Carole L. LaValle Edye Marshall and Marilyn J. Crum Kershaw Commons is a pretty unique place to live where all 30 tenants share a common bond we all have MS. We are all dealing with it in our own way but sometimes its hard and morale can slump pretty low. But on noon on Thursday is when things always begin looking up. Starting when we hear the beat of happy music coming from the community room and we know Nick is here and its time for chair Zumba plus. I add the plus because there is a lot more going on here than just exercising. Nick is our instructor and friend who not only puts together a killer workout with great music and moves but he always fills the room with his positive vibe. His passion is to help people and to share what he knows about MS which is a lot because Nick lives with MS and could easily be the prototype of how we should all deal and live with a chronic disease. Hes an excellent example of what we can do right now to help ourselves being active working with our doctors good nutrition and staying positive. Nick is always encouraging us his positive upbeat attitude is his ace and it is infectious. The time after Zumba has evolved into an unofficial social get-together every week. Nick is always there to help or just listen if you need someone to talk to. Just let me add that Nick drives 100 miles to come see us. Nick Marchesani is a force and I know were very lucky to have him share his Multiple Strengths with us. 49MSFocus Summer 2015 MSF now on Instagram The Multiple Sclerosis Foundation is now on Instagram. Instagram is a photo and video sharing social networking site. You can view photos and videos from your computer but you must post from a mobile device. You can share pictures from Instagram directly to other social networking sites including Facebook and Twitter. Check out our page at httpsinstagram.commsf_staff. To follow us create an account and log in. Then youll be able to share your pictures too. Find 2015 MS Awareness Kit online National MS Education and Awareness Month may be over but the advocacy mission continues. Our MS Awareness Kit is available on our website for those who would like to print additional copies of any of the materials or would like to share it online. Its available courtesy of Mylan. You can find the digital version of the kit on msfocus.org by going to our Programs Activities page then choosing National MS Education Awareness Month. At the bottom of the page you will find a link to view the 2015 Awareness Kit. Visit our new website and win The MSF announces a new contest to officially launch MSFocusmagazine.org.For five weeks beginning Aug. 15 participants will be asked to spot the key words embedded in the weekly exclusive content on the website. New stories will be posted each Monday. There will be a drawing each week and a winner will be selected at random from the correct entries and will receive a MSF prize pack. At the end of the five weeks a grand prize winner will be drawn at random from those who put the keywords together correctly. The grand prize will be a 200 gift certificate for Amazon.com. To be eligible for the weekly drawings participants must email their entries by midnight EST of the Sunday following the new storys postingto contestmsfocus.org. For the grand prize participants must email their entries by midnight EST on Sept. 21 to contestmsfocus.org. In Our Office The Program Services Department spotlights individuals who help bridge the Foundation and our community. In this edition we focus on Linda Alexis one of our Support Services Coordinators. Linda who has a degree in Social Work answers our toll-free support line and provides case management through our Assistive Technology program. She answers questions from callers provides resources for those with MS and p r o c e s s e s p r o g r a m applications.Linda Alexis 22MSFocus Summer 2015 22MSFocus Summer 2015 53MSFocus Summer 2015 Clinical trials are an integral part of clinical research and are responsible for many if not all advances in medicine. They offer hope for many patients and an opportunity to help clinicians discover better treatments for patients. Under- standing the clinical trial process can be very confusing. This article reviews many aspects associated with clinical trials and will hopefully provide the reader necessary information to assess whether a clinical trial is right for them. Types of Clinical Trials There are many types of clinical trials e.g. treatment trials prevention trials diagnostic trials screening trials quality of life trials and genetic trials. Some clinical trials are a hybrid of several types. Treatment trials generally involve an intervention i.e.medicationpsychotherapy new devices or new approaches to treat- ment. Treatment trials are the most common type of clinical trials that recruit patients. In some treatment trials all patients receive the same intervention whereas in others patients may receive one of several interventions. In some treatment trials all patients and investigators are blinded to treatment they do not know what treatment option the patient is receiving whereas in other clinical trials no one is blinded or only certain parts are blinded. Prevention trials evaluate better ways to prevent diseases from developing or returning. Prevention trials may evaluate medicines vitamins vaccines minerals or lifestyle changes. Diagnostic trials examine better ways to identify a particular disorder or condition. Screening trials aim to discover the best ways to detect certain disorders or health conditions. Quality of life trials evaluate if the treat- ment improves or worsens a patients quality of life. Managed care entities or insurance companies frequently base approval or denial of a claim based on quality of life data. The Protocol Each clinical trial has a protocol. This document is usually more than 100 pages long and describes the intricacies of the trial including Who is eligibleineligible to participate Information about the tests procedures medications and dosages used in the trial The length of the study and what information is being evaluated e.g. primary endpoints secondary endpoints safety and tolerability pharmacokinetics pharmacodynamics Intricacies of the Trial A clinical study is coordinated by the principle or primary investigator. The PI is usually a health-care professional i.e. doctor pharmacist nurse etc. or a researcher i.e. Ph.D.. The PI is usually NavigatingNavigating Clinical TrialsClinical Trials By Ellen Whipple BS Pharm.D. MSF Medical Advisor MSFocus Summer 201554 the first author listed when the trial is published or presented. The U.S. Food and Drug Administration has authority over all clinical trials for drugs biological agents and medical device products. This includes studies that are funded by the U.S. Department of Health and Human Services as well as studies funded by pharmaceutical companies or private institutions. Clinical trial procedures are reviewed by Institutional Review Boards. These boards are generally composed of researchers health-care providers and lay people. IRBs must approve a clinical trial before it can commence. The general purpose of the IRB is to ensure that appropriate steps are taken to protect the rights and welfare of the patients participating in the clinical trial. Prior to participating in a clinical trial all patients must provide informed consent this is the process of providing potential patients the key facts about the trial before they decide whether or not to participate. The process of informed consent continues throughout the duration of the study and may include assessments of post-treatment parameters. The research team provides an informed consent document that includes details about the study including the purpose duration required procedures and contact information.This document also provides the risk and potential benefits of treatment. Once signed the informed consent document is not binding in other words patients can withdraw from the clinical trial at any time. Phases of Clinical Trials Clinical trials are conducted in phases. Each phase has a different purpose and assists researchers in answering a different question. Preclinical trials do not involve humans. They are usually laboratory experiments that look at the effects of medication in vitro outside of the body or in animal subjects. The in vitro trials look at the effects of treatment in experimental models. A common experiment model in multiple sclerosis is experimental autoimmune encephalomyelitis EAE.In animal studies the animals are commonly given very large doses of the medication to establish safety and tolerability. These data in animals typically form the basis for overdose information for a given treatment. Phase I trials are the first human trials. They are usually small trials and typically include less than 100 participants. The purpose of Phase I trials is to evaluate the safety of the medication. Some Phase I trials do also look at efficacy or how the medication works in the body pharma- cokinetics what the body does to a drug and pharmacodynamics what a drug does to the body. Many participants in Phase I trials are healthy this enables researchers to identify safety concerns in a population of patients without particular diseases or conditions. Some clinical trials especially clinical trials using oncology medications are usually only tested in Phase I in patients with cancer. Medications are generally not approved by the FDA based on Phase I trial results in very rare cases the FDA have accepted Phase I data as the basis of approval. Phase II trials typically commence after successful Phase I trials. When serious toxicities are identified in Phase I trials medications commonly do not progress to Phase II trials. The purpose of Phase II trials is to determine the effectiveness of the medication in a large population of patients usually less than 300 patients. Medications are generally not approved by the FDA based on Phase II data in certain situations the FDA have accepted Phase II data as the basis of approval. MSFocus Summer 201555 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. Phase III trials typically commence after successful Phase II trials. Medications found not to be effective or those that produce serious toxicities commonly do not progress to Phase III trials. The purpose of Phase III trials are to establish safety and efficacy of a medication in a large population of patients.They also commonly compare the medication to currently- approved standard treatments of a condition. Pharmaceutical companies generally request approval from the FDA based on successful Phase III data. Phase IV trials or Post-Approval Surveillance Data Trials occur after a medication has been approved by the FDA. The purpose of these trials is to continually monitor the safety of a product and to discover more information about the medication.These trials commonly discover rare side effects because large pools of patients are available. In some instances drugs are withdrawn from the market based on negative Phase IV trials or post-approval surveillance data trials. Evaluating a Clinical Trial Should I Participate Or Should I Decline Participation in a clinical trial is a personal decision. While patients should most certainly consult with health-care providers the decision is ultimately theirs. There are things to consider when deciding whether or not to participate. Do the risks of the treatment outweigh the benefits Will this trial promote science Are you comfortable with the informed consent document Evaluate and discuss with your loved ones. My Experiences as a Clinician and a Participant in Clinical Trials As a clinician I understand the value of clinical trials and spend much of my day everyday reading critiquing and assessing the value of clinical trial data. But I have also experienced the other side of clinical trials. In my 30s I was diagnosed with breast cancer and have participated in two clinical trials as a result. While the standard of care for some patients with breast cancer is chemotherapy it is not for others. I was unfortunately in the middle my medical oncologist could not tell me definitively if I needed chemotherapy or not. Interestingly there was a clinical trial investigating patients just like me. In this trial 5000 patients received hormonal therapy with chemotherapy and 5000 patients received only hormonal therapy. Without a second thought I enrolled in the trial and was randomized to the only hormonal therapy group. Preliminary results from this trial have been presented and demonstrated that patients like me actually do not benefit from chemotherapy These results are significant for many reasons most important to me however the results from this trial will spare patients who do not need chemotherapy from the many toxicities associated with the medications e.g. side effects secondary cancers since chemotherapy can also cause cancer etc.. 56MSFocus Summer 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 To find out if the MSF will be visiting your local community stay connected through our Facebook page at www.facebook.comMultipleSclerosisFoundation. MSF Leaders Take Part in National Events The Multiple Sclerosis Foundation made its presence known at both the American Academy of Neurologys annual meeting in April in Washington D.C. and the 2015 Annual Meeting of the Consortium of Multiple Sclerosis Centers in May in Indianapolis. April 18-25 Washington D.C. MSF had an exhibit at the 67th American Academy of Neurologys annual meeting which took place at the Walter E. Washington Convention Center. The meeting offered more than 170 education programs covering the spectrum of neurology including multiple sclerosis. Neurologists from all over the world attended the 2015 meeting. MSFs Co-Executive Directors Jules Kuperberg and Alan Segaloff and MSFs Director of Programs and Services Natalie Blake had the opportunity to learn the latest information available about MS drug therapies. Dr. David Jones of the University of Virginia who is also a member of MSFs Medical Advisory Panel is chair of the Multiple Sclerosis Section of the American Academy of Neurology. The goal of the MS Section of the AAN is to broaden patient care research and teaching techniques in the area of multiple sclerosis. May 27-30 Indianapolis The 2015 Annual Meeting of the Consortium of Multiple Sclerosis Centers was held at the JW Marriot Hotel. The CMSC is the largest national MS meeting that brings together neurologists radiologists other medical specialists clinical researchers basic scientists nursing professionals rehabilitation specialists mental health professionals members of the nonprofit community and the corporate supporters. Several members of the MSF were in attendance including Co-Executive Directors Jules Kuperberg and Alan Segaloff Director of Program Services Natalie Blake Associate Director of the Homecare Grant Program and Patient Assistance Program Sherrol Patterson and Manager of Support Groups and Outreach Alissa Ayden. Also present were MSF Senior Medical Advisor Ben Thrower and Medical Advisory Panel Members Daniel Kantor David E. Jones Mitzi Williams Herb Karpartkin and Marissa A. Barrera. 57MSFocus Summer 2015 By Hildy Berger Championing the MS Cause Volunteer Michael Allen hosted an MSF table for National MS Education and Awareness Month in March during Real Fighting Championships Proving Ground Mixed Martial Arts event in Tampa Fla. During this high-profile competition Michael spoke about MS in the ring before any action began and between matches our There is a Bigger Fight Outside the Ring graphic was displayed on the Jumbotron. Allens advocacy of the foun- dation has resulted in a charitable partnership between the MSF and the RFC and he has been invited to represent the MSF and raise funds at all future RFC events. Since 2014 Allens attendance at various MMA events as well as other fundraising activities has brought in donations totaling 1500. Thanks Michael for fighting the good fight on behalf of all those challenged by MS MS Group Faithfully Supports March Awareness and each other Scheduled smack in the middle of the awareness month on March 15 Joyous Living Faith Partners an MSF-affiliated Support Group hosted a MS information table at the groups meeting place Second Baptist Church in Miami. Initiated by leader Cynthia Lyons the group donned their brightest orange attire to display MS Awareness packets and accept 825 in donations for the Foundation from the churchs generous parishioners. True to their name Joyous Living Faith Partners mission is to encourage educate and be an outlet for all people with MS. We are dedicated to empowering those diagnosed with MS caregivers family and friends. We aim to give hope while standing together in faith. All Dolled Up for Bingo Who puts on their best party dress and highest heels for bingo night The Positive Thinkers of Port Richey Fla. thats who This upbeat group of drag queen divas hosted an evening of risqu fun and chance on May 1 with ticket sales benefitting the MS cause. A thank you 58MSFocus Summer 2015 goes out to all the Positive Thinkers glam gals and MSF-affiliated support group leader Susan Struder. Susan pounded the pavement to sell tickets in advance for the rowdy raffles which fetched lots of laughs as well as 1500 for the MSF. Thanks So Much... Melissa Winslow-Bryant and Regina Grosse organized the Be A Mess for MS fundraiser that took place on March 28 at Aint Missbehavin Bar Sports Club in Winter Park Fla. MS info was offered along with the food and beverages while raffles drinking games even a bikini contest served up a very neat 1500 donation for the MSF And much appreciation to MS Walk coordinator Tomeka Walker Thomaston Ga. Dodgeball Tournament organizer Tristan Ward Philanthropy Chair Theta Xi Fraternity at University of Idaho Bake Sale fundraiser Kristen Brinkley Bluefield Va. and Ingress First Saturday devotee Dimira Jenkins a.k.a Alorastar for their time and fundraising efforts which brought in an additional 1036 this year from volunteer events Join the Hike for MS Nature enthusiast Jim Lewis doesnt let MS prevent him from doing what he loves hiking and camping with his loyal dog Nika.These determined long-distance hikers journey for months at a time logging hundreds of miles on the legendary Appalachian Trail. Join the Hike is Jims way of merging his passion for outdoor adventure with his resolve to educate the public about MS and a strong desire to fundraise for the cause. Jim recently launched JTH with help from our Development Department and many local supporters and sponsors with fundraising and outreach which will culminate in a 1165 mile hike beginning in April 2016. Jim will start in West Virginia traverse 10 states and likely spend five months to reach his destination in Katahdin ME. Jim would love to hear from MS advocates all over the country. Show your support and offer some words of encouragement by going to his website www.at-ms-fundraiser.com and messaging him on his Join the Hike for MS Facebook page. 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. 59MSFocus Summer 2015 Eat Drink and Win The MSF hosted our first Meatballs Martinis event on May 6 at Anthonys Runway 84 in Fort Lauderdale Fla. In a joint effort with TransMedia PR tickets were sold out by noon the day before Attendees noshed on meatballs sipped martinis and enjoyed live piano music during cocktail hour while socializing and trying their luck with a bevy of raffles. Prizes and gift baskets were donated by JM Lexus Orangetheory Paul Castronovo Thermae Retreat Harris Art Studio Red Door Salon Truly You and Chef Jean-Pierre. A huge thank you goes out to all our local supporters who came out and donated. Tickets were sold in mass quantities and there were many happy winners that night resulting in a total of 3200 raised for the Foundation. Thank you to MSF Connect loyal supporter Jersey Mikes Subs For the second year in a row during the month of March four local Jersey Mikes Subs restaurants helped spread the word about National MS Education and Awareness Month through donations and customer discounts. The company held its annual Day of Giving in which 100 percent of all sales are donated to their charity partners on March 25. A huge thank you to Hillary Hutchinson and the Jersey Mikes staff at the Deerfield Beach Parkland Coral Springs and Fort Lauderdale Florida locations. Their incredible dedication and generosity throughout the month raised 15520 for MSF Margaritas 4 MSF When Thursday Aug. 6 Where Dos Caminos located inside the New B Ocean Resort Ft. Lauderdale Fla. Bocas Got Talent Boca Chamber Festival Days When Monday Aug. 17 Where Dubliner Irish Pub Mizner Park Boca Raton Fla. Mad Hatter Luncheon Honoree Patrick Daoud Cocktail Hour Luncheon Fashion Show Silent Auction When Friday Nov. 6 Where 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 Lori McQuestion TransMedia Group at 561-750-9800 Upcoming 2015 MSF Events MSF Fund Development Events 60MSFocus Summer 2015 According to the FDA a mobile medical application can help people manage their own health and wellness promote healthy livingand gain access to useful information when and where they need it. While visiting and talking to your doctor is very important MMAs can be a great addition to your medical portfolio. With new drugs and therapies being created at a growing pace these apps are a great tool to help you navigate the often unintelligible medical world. Taking charge of your health is crucial for everyone but it is particularly useful for MS patients. You often want and need more information than your doctor provides. MMAs can be a very useful tool to help you or your caregivers with this overwhelming task. There are so many MMAs now that it would be impossible in the scope of this article to review more than a few. Take the time to search and find MMAs that meet your needs. The easiest way to find a comprehensive list of the latest medicalhealth apps from iTunes is httpsitunes.apple.comusgenre. Click on App Store and choose Medical or Health and Fitness. While this list is long and not very easy to use it will nonetheless help you find apps that will fit your needs specifically. For Google Play on android devices go to httpsplay.google.comstoreapps. Click on categories and choose Medical or Health and Fitness. There are pictures of the app as well as user ratings. This list is easy to use and very helpful. Many health providers insurance and drug companies also offer MMAs. Check their website to see if they provide an app for tracking your medication health andor your health benefits. Below are reviews of several of the well-rated free apps that are for both Android and Apple. These examples will give you a sample of how MMAs can be a valuable asset when dealing with MS. There are also low-cost apps that are good resources. This article only reviews apps that are free. CareZone CareZone is a great way for you or your caregiver to keep all your important medical information in one place. Signing up is free. The medication feature of CareZone is comprehensive and helps with reordering as well. In addition to the usual medication and journaling feature there is a social media component that allows sharing with people in your contacts. Other helpful features include Managing Your Health with Medical Mobile Apps By Joanne Fortunato 61MSFocus Summer 2015 a calendar notes and a to-do list. This app does not give information on drugs or therapies and is solely for keeping current important medical information in one place. Your CareZone information can be accessed through an app or on the web at httpscarezone.comhome. Drugs.com It takes a little time to set up your information in this app but it makes the app more useful. Once you have created a free account it is simple to use and has many very helpful features. These include an interaction checker to find medications that can interfere with each other. The Support Group Android or Questions Answers Apple feature is one of the more interesting sections. It gives you a chance to see what issues others have and how they have dealt with those problems. A word of caution these are not researched medical opinions. Rather they are just other patients opinions and not necessarily MS patients. This app is robust. Take time to explore the many great features. MyMedSchedule Taking your medication in a timely manner can be difficult. This app will help. Once you register and add your medications this app makes it easy to keep track of your medication schedule. This would be especially useful for caregivers. Each medication on your schedule includes a picture so it easy to identify. This is very helpful as it is very easy to mix them up. You can send text andor email reminders of the time you are scheduled to take each medication. Of course you need to have your device nearby and your notifications on with sound for it to be useful. This feature is easily found on all mobile devices. The idea of managing your health by using a mobile device andor a computer is a growing field. Most doctors and healthcare providers already use and share electronic information. While this technology is not perfect it is improving all the time. The sooner you get on board the easier it will be when it becomes the primary way to stay in control of your health care. To read more information about this topic visit httpwww.fda.gov and search for mobile medical apps. 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. 62MSFocus Summer 2015 A Guardian Angel Named Lucky By Bill Walker I believe that guardian angels surround us all of the time waiting for the right moment to show themselves just when we need them the most. And you may not even recognize them for what they are until years after some kind of emotionally crushing event happens like being diagnosed with a silent and incurable disease such as multiple sclerosis. I moved to Washington State in 1996 to be closer to family who had already relocated to the Evergreen State. I quickly found a job at a private golf club and then became involved with an animal rescue organization on Whidbey Island in Western Washington.The Whidbey Animal Improvement Foundation as it is called took on the daunting task of financially supporting many unwanted and abandoned pets as people moved off the island leaving their dogs and cats to fend for themselves. About a year and a half after my move I got a phone call one early evening from another volunteer from the shelter in a state of pure panic. Earlier in the day she had witnessed a car throw something out of a window as it sped past her house. Concerned about just what that might have been she went out to look. To her shock and dismay she found that the object that had been tossed was a kitten lying semiconscious in the middle of the road. She quickly scooped up this tiny ball of fur and was off to the vet where it was diagnosed as just being in shock and having a few bumps and bruises. This volunteer already had many dogs and cats in her own home and felt that one more was just too much for her small house and yard which is where I came in and why she was calling me. She couldnt bear the thought of taking this kitten and turning her over to the shelter she felt that this kitten had been through enough already and asked would I please consider adopting her Answering no wasnt an option even though I already had two cats in my apartment. This is how Lucky as this volunteer friend had already named her came to me. Two years later one of those original two cats passed on just as I was struck down with my first MS attack. Not long after that the second one followed in much the same way leaving just myself and Lucky to deal with my new life as a person with multiple sclerosis. I was rocked to my physical and emotional core but Lucky became the lifeline that I clung to. She always seemed to sense when I needed her most. For most people dealing with insurance companies hospitals and doctors while trying to stay employed are just some of MSFocus Summer 201563 lifes little nuisances that have to be dealt with when time permits. However when you find yourself facing an incurable disease they become something more in the line of monumental challenges where the rules are rarely if ever explained to you. And its at times like these where the tears often fall as the aggravation mounts to levels that most people either dont or cant comprehend. It was always at times like these that Lucky would realize how badly she was needed on my lap even when Im sure she would much rather have been outside climbing a tree or chasing a bird or a mouse. As the years passed Lucky was my ever-present rock against insurance companies who couldnt have cared less whether I got any better or not as they tried their best to keep the cost of my healthcare as low as possible. She never complained about my loud vocal outbursts when trying to map my way through government agencies that I thought were there to help you but more often then not end up creating even more stress as they pass you from one level of bureaucracy onto the next. More than seventeen years later as I watch her deal bravely with her own health issues I realize the most important gift of all that she has given me. We are all here to learn to live love and overcome all of these challenges that are thrown our way as best we can with what God has given us to help us endure. And my angel Lucky taught me this without ever saying a word. Bill Walker is a freelance writer who writes a blog about MS msandbeyond.wordpress.com. He also just published his first novel titled Visus that follows a group of orcas as they journey up the Pacific Coast to a place they know of as Great Schools of Fish. FREE EDUCATIONAL PROGRAMS BY PHONE Join us for the MSFocus Radio monthly teleconference series. Tuesday August 11 830 p.m. Eastern 530 Pacific Building Your MS Support Network Presented by Alissa Ayden MSF Support Groups and Outreach manager Tuesday September 8 830 p.m. Eastern 530 Pacific Treatment Options for Spasticity in Multiple Sclerosis Presented by Zachary W. Bohart M.D. Tuesday October 27 830 p.m. Eastern 530 Pacific Empower through Exercise Presented by Courtney Macksoud DPT MSCS Keep an eye on your email and on our website for updates and changes to our teleconference schedule. To join any of these educational teleconferences call 888-550-5602 and enter 23441168 up to five minutes before the scheduled start time. You will be placed on hold until the conference begins. To view the presentation during the call connect to httpsccc.spiderphone.com23441168. 64MSFocus Summer 2015 Review by Briea Curington Written by John McDougall M.D. and his wife Mary The Starch Solution Eat the Foods You Love Regain Your Health and Lose the Weight for Good provides a detailed outline for helping readers improve their well-being change their lifestyle and increase overall quality of life. With more than 300 pages the book spotlights the benefits of plant-based eating and following a strict starch-rich diet full of carbohydrates proteins and vitamins. Considering diet to be a powerful medicine John McDougall ultimately set out to challenge the notion that starch can be unhealthy and wanted those living with a chronic illness to understand the effect of diet on their life. Including an easy-to-follow dietary 7-Day Sure-Start Plan weekly menu planner and tons of affordable recipes for all tastes this program lists practical information for you and your family on how to reset your thinking and ready your kitchen for better food options. Readers will enjoy this firsthand account of the diets varied advantages and the bevy of nutritional tips supplied to give a much-needed physical and mental energy boost. All in all this book is a thorough read and will resonate with individuals who are looking for a great tool to help kick-start a new lifestyle journey as well as those looking for a resource to address questions they may have regarding healthy eating. The Starch Solution Eat the Foods You Love Regain Your Health and Lose the Weight for Good By John A. McDougall M.D. and Mary McDougall 318 pp. Rodale. 16.99 Journeys Healing Through Natures Wisdom by Karen Roberts and Dana Simpson. Photography by Tim Hauf. Review by Marianly H. Primmer Nature is all around us. Its not only wilderness but it also encompasses house plants and animals. Karen Roberts and Dana Simpson see nature in a special way. They authored the book Journeys Healing Through Natures Wisdom with stunning photography by Tim Hauf. The book is a collection of essays from two women who each suffer from chronic illnesses and use nature as a form of healing. Roberts was diagnosed with MS more than two decades ago at a time when there werent any medicines for the disease. She has had a connection to nature since she was a child. Roberts worked on Wall Street for many years before moving to a ranch The Starch Solution Eat the Foods You Love Regain Your Health and Lose the Weight for Good by John A. McDougall M.D. and Mary McDougall Summer 2015MSFocus 65 in California. After being diagnosed she traveled the world to take in nature. while Simpson who has Lyme disease finds nature closer to home. Roberts said Its Tims photography that carries the reader from page to page. The vivid photography completes the essays. The color photographs depict the places where the women experienced nature. Their essays span different continents and climates from the jungles of Ecuador to the canyons in Utah and back home to various places in California. The book makes a parallel between nature and ones own body. It stresses two main components for healing to occur acceptance and willingness to change. The authors take a holistic approach to healing. Through nature they experience an inner journey that is essential for an outer transformation to take place. The essays encourage people to experience nature on their own level whether its a trip overseas or a walk in a park. The book fulfills its role of giving hope and inspiration to the reader to find their own way to heal through acceptance and compassion toward ones body. Listen to the MSFocusRadio interview with co-author Karen Roberts at httpssoundcloud.comms-focus and click on the Karen Roberts interview. Journeys Healing Through Natures Wisdom. By Karen Roberts and Dana Simpson 143 pp. Tim Hauf Photography. 40. To borrow this and other titles call the MSF Lending Library at 888-MSFocus 673-6287 or visit www.msfocus.org. Click on Lending Library under the Programs and Activities heading. MSFocus Summer 201566 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... 21st Century Cures Act Passes U.S. House The MSC specifically applauds the inclusion of H.R. 292 as a provision of the Act the goal of which is to establish a data system to track the incidence and prevalence of neurological diseases including multiple sclerosis. This provision will help advance MS research by establishing a data system to collect the size and makeup of the MS population. Currently no one has an accurate account of how many people in the United States have MS or the demo- graphic characteristics of those living with MS. As a result MS researchers are working at a distinct disadvantage because they are operating without basic information about the disease. By establishing this data system researchers will be supplied data that may point to new environmental triggers which could lead to a better understanding of the disease and new disease targets. The collection of this data is vital to the future of MS research Multiple Sclerosis Coalition President Lisa Skutnik said. We are proud to support this legislative effort to accelerate the discovery development and delivery of treatments and thank the House Energy and Commerce Committee for their leadership on behalf of people with MS and other illnesses. For more information visit httpenergycommerce.house.govcures. The U.S.House of Representatives passed the 21st Century CuresAct H.R.6 - Cures2015 by a vote of 344-77. This legislation aims to increase the speed of research bring drugs to market more quickly and increase funding for the National Institutes of Health and Food and Drug Administration. For those with MS the act contains a key provision. According to the Multiple Sclerosis Coalition of which MSF is a member MSFocus Summer 201567 FDA approves first generic Copaxone The U.S. Food and Drug Administration approved the first generic version of glatiramer acetate injection Copaxone used to treat patients with relapsing forms of multiple sclerosis. Sandoz a Novartis company has received approval to market Glatopa as a 20mgml one-time-daily multiple sclerosis therapy. In the clinical trials for Copaxone the most common adverse reactions reported by those taking Copaxone were skin problems at the injection site redness pain swelling and itching flushing vasodilation rash shortness of breath and chest pain. Dr. Thrower The addition of more treatment options for MS is always welcome news. Currently there are two FDA-approved versions of name-brand Copaxone 20mg injections daily and the newer 40mg injection given Monday Wednesday and Friday. The patent for 20 mg Copaxone expires in September 2015 allowing for the possibility of a generic version.The 40mg dose of Copaxone will remain name-brand only. The FDA- approved generic of 20 mg Copaxone will be called Glatopa and is expected to be less expensive than Copaxone. While this is welcome news some have expressed concern that no human clinical trials were done on Glatopa only lab testing. Still these tests did satisfy the FDA. One other concern with the generic Glatopa will be the level of customer support that Sandoz will give. Financial assistance and nurse support are crucial for the long-term success of the complex and expensive MS therapies. Treadmill exercise found to offer cognitive benefits A new study suggests that treadmill exercising offers cognitive benefits to patients with MS. By comparison to exercise methods quiet rest offered no benefit. Researchers led by Brian M. Sandroffa of the Department of Kinesiology and Community Health at the University of Illinois at Urbana-Champaign wanted to know if exercise training helped MS patients manage cognitive impairment. They compared the effects of treadmill walking stationary bicycling and guided yoga with those of quiet rest on executive control in 24 individuals with relapsing- remitting MS without impaired cognitive processing speed. The MS News column includes analysis from MSF Senior Medical Advisor Ben Thrower M.D. Dr. Thrower draws from the top MS news stories of the quarter and assess what the news means to you the person with MS. MS NEWS and What It Means to You MSFocus Summer 201568 What they discovered is that treadmill walking offered the greatest benefit on improving reaction time and dealing with distracting information. It proved to be more effective that stationary bicycling and guided yoga which only offered reaction time benefits. Quiet rest showed no benefit. The findings were published in the Journal of Clinical and Experimental Neuropsychology. Dr. Thrower It is now well-accepted that regular exercise is an important part of a comprehensive wellness program for people with MS. Research has consistently shown improvements in fatigue daily functioning and quality of life with exercise in MS.This is a far cry from the days when people with MS were told not to exercise for fear of worsening their MS. Questions still remain however.What symptoms can improve with exercise in a person with MS What type of exercise is best This study seems to point to improvements in cognition with treadmill exercise in MS. Why the treadmill and not yoga or an exercise bike Stay tuned. Perhaps further research will help sort this out. For now try to make exercise a part of your comprehensive treatment plan. In the end the best exercise program is the one you will stick with over time. Survey finds patient neurologist communications gap The new State of MS Report finds that while most patients and neurologists view overall MS care favorably both sides appear to hold back from discussing certain MS symptoms even those characteristic of the disease. Further the findings show that what they do talk about may differ significantly from what they want and need to talk about. Nearly three-quarters of both neurologists and patients are using online and social media resources to find information on MS. The survey commissioned by Biogen Idec in collaboration with the State of MS Consortium and conducted online by Harris Poll found that neurologists cited lack of time during consultations as the biggest communication barrier. For patients however the biggest barrier is not wanting to be seen as being difficult followed by time constraints. The findings also show that among patients 19 percent reported being uneasy talking about difficulty walking 19 percent were uneasy talking about tremors and 18 percent were uncomfort- able talking about muscle spasms. When it came to more sensitive and private issues 54 percent were uncomfortable talking about sexual difficulties 28 percent were uneasy discussing bladder or bowel problems and 21 percent were uncomfort- able discussing cognitive or memory issues. The survey found that 44 percent of patients want to know about new developments in MS treatment and research. Neurologists want to offer patients ways to maintain cognitive function manage the emotional challenges of having MS and on sexual activity. Neurologists and patients are both using the Internet to find information on MS by wide margins. The State of MS survey was conducted in March and April of 2014. It included 982 adults diagnosed with MS and 900 neurologists who treat MS patients. The survey was conducted in Germany Italy Spain the U.K. and the U.S. Dr.ThrowerMS is a complex life-long health issue that requires a comprehensive 69MSFocus Summer 2015 team approach for optimal management. Communication between healthcare team members and the person with MS is crucial. So much of modern medicine is focused on efficiency both of time and resources. Many comprehensive MS centers see far fewer patients in a day than a typical neurology practice. This allows for the effective management and coordination of care while also putting pressure on these centers to survive financially. This current study points of some of the gaps in communication that are occurring in modern MS care. As a neurologist working exclusively with the MS community I encourage people to write down all of their medications and questions. Having a friend or family member come to appointments may increase the chances that all concerns are addressed. New study suggests coffee reduced MS risk link Drinking coffee may be associated with a lower risk of developing multiple sclerosis according to a new study. Researchers reviewing Swedish U.S. studies found that those who did not drink coffee had about a one-and-a-half times increased risk of developing MS. According to the study authors caffeine has neuroprotective properties and seems to suppress the production of pro- inflammatory cytokines which may be mechanisms that explain the observed association. Researchers looked at a Swedish study of 1629 people with MS and 2807 healthy people and a U.S. study of 1159 people with MS and 1172 healthy people. The studies characterized coffee consumption among persons with MS one and five years before MS symptoms began as well as 10 years before MS symptoms began in the Swedish study and compared it to coffee consumption of people who did not have MS at similar time periods. The study also accounted for other factors such as age sex smoking body mass index and sun exposure habits. The Swedish study found that compared to people who drank at least six cups of coffee per day during the year before symptoms appeared those who did not drink coffee had about a one-and-a-half times increased risk of developing MS. Drinking large amounts of coffee five or 10 years before symptoms started was similarly protective. In the U.S. study people who didnt drink coffee were also about one-and-a-half times more likely to develop the disease than those who drank four or more cups of coffee per day in the year before symptoms started to develop the disease. Dr. Thrower No this study was not sponsored by Starbucks.What do we make of this study suggesting that people who drank at least six cups of coffee per day had a lower risk of developing MS Does that mean that coffee intake is a good thing for people who already have MS Overall I would argue that the jury is still out on both these questions. It is possible that people in Sweden who drink lots of coffee may also have other lifestyle factors that could lower the risk of developing MS. For the person with MS high amounts of caffeine may have negative consequences such as irritating the bladder and leading to more urgency frequency and incontinence. For now moderation may be best. 70MSFocus Summer 2015 Q.Q. How can multiple sclerosis affect my sleep A.A. Sleep disorders are undiagnosed in people with multiple sclerosis according to the results of one study. Researchers found that sleep disorders may lie at the root of fatigue that affects people with MS. Researchers surveyed 2375 people with MS and found that of them 37.8 percent reported symptoms consistent with obstructive sleep apnea 31.6 percent reported moderate to severe insomnia and 36.8 percent reported restless legs syndrome. By comparison only 4 percent 11 percent and 12 percent of the respondents reported being formally diagnosed with obstructive sleep apnea insomnia and restless legs syndrome. The study suggests that sleep problems such as sleep disorder frequency sleep patterns and complaints of excessive daytime sleepiness may be a hidden epidemic in the MS population separate from MS fatigue. Fatigue is the most common symptom seen in MS and for many the most bothersome. While fatigue can be a direct result of the MS itself other factors such as medications and disrupted sleep may also contribute. This study shows how common sleep disorders are in MS. Clinical clues to an underlying sleep disorder include feeling fatigue upon first awakening or a history of snoring from the family spouse or partner. If a sleep disorder is suspected the next step should be a referral to a sleep clinic for a sleep study. Q.Q. How can I improve my thinking if I have multiple sclerosis A.A. Researchers have found that slow processing speed explains executive deficits in people with MS. Researchers examined two key variables executive function and processing speed. The brains frontal lobe coordinates the mental skills that make up executive function. Examples include but are not limited to the ability to manage time and attention switch focus plan and organize and remember details. Processing speed is the ability to quickly and efficiently respond to basic stimuli and is often defined as the speed of completion of a task with reasonable accuracy. Researchers found that on timed tasks of executive function people with 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. 71MSFocus Summer 2015 MS performed worse than healthy individuals.When the scientists controlled for speed performance deficits disappeared. They also found no link between atrophy and performance when speed was controlled for. The results point to slowed processing speed as the mechanism underlying deficits in executive function. Under- standing this association is an important step toward the development of effective cognitive rehabilitation strategies for individuals with MS. Cognitive dysfunction is common in MS and is a leading cause of vocational disability. This study shows that some of the cognitive challenges faced by people with MS might be partially addressed by allowing more time to complete the task. The real world implications are significant. Healthcare providers may need to ask for more time for students with MS to complete an examination. Employers may need to consider adaptive requests to accommodate slowed processing speed. Cognitive symptoms in a person with MS may be magnified by fatigue andor depression. Comprehensive neuro- psychological testing remains the best way of sorting out the root causes of cognitive symptoms. Q.Q. How can positive psychology help people with multiple sclerosis A.A. While conventional depression treat- ments typically focus on reducing negative behaviors thoughts and feelings positive psychology promotes daily practice of self-management strategies that increase positive mood and thinking and this can help people with multiple sclerosis. These strategies empower you to feel happier by changing perceptions and capitalizing on your positive qualities. By identifying and incorporating your positive qualities into daily routine you are less likely to feel worthless and damaged by MS and more likely to feel good about yourself. Finding and recognizing opportunities for applying the positive qualities you like about yourself and retain in spite of MS even if now expressed in different ways fosters hope which is often absent in depression. Happiness-building activities are the core of positive psychology. Increasing happiness does not mean denying the reality of your situation. By increasing positive experiences you broaden your perspective in ways that promote constructive change and adaptive coping or prevent worsening a situation. Three basic techniques for building positives into your life include practicing optimism mindfulness and gratitude. 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