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5 MSFocus Winter 2016 A flip of the calendar and lo and behold its already 2016. As we age many say our perception of time changes so that it appears as though the days weeks and months and yes years are moving at a faster pace. Do you recall your childhood when at the beginning of a school year June felt eons away Well like it or not 2015 is already behind us. With that in mind a look back would certainly be in order. It was a noteworthy year. The number of MS drugs going through different stages of FDA trials is providing continued optimism for the future.However last year heralded very good news on the approved MS treatment front as Glatopa joined the growing ranks of available disease modifying therapies. Equally noteworthy is its status as a generic MS drug. Hopefully generic versions of other MS drugs will become available in the years ahead adding to the widening array of treatments as well as offering potentially lower cost options for patients. As for the MSF in 2015 our national pledge campaign center reached a new record in generating financial support across the country. Regular readers of this publication will recall its uniqueness as a year-round facility under the direct management of a charitable organization. With an overwhelming attendance of 200 people our program services staff conducted our first bilingual program in San Juan Puerto Rico titled Latin Americans with MS. In attendance were two leading MS neurologists. This event underscored the MSFs commitment to reaching underserved areas. During March 2015s National MS Education and Awareness Month our outreach staff conducted various educational programs across the country focused on patient advocacy. These programs were designed to inspire and motivate both patients and families to let their voices be heard where it counts the most. The scope of our national presence expanded with dramatic increases in MSFs outreach vehicles such as the number of followers on social media listenership on our radio station and readership of our various publications including EmpowerSource support group newsletter. Additionally we produced more than 20 new educational videos. 2016 looks to be a very promising and noteworthy year as the MSF commemorates its 30th anniversary. Capping off the year in December will be an extraordinary celebration and gala at the Ritz-Carlton Hotel in Fort Lauderdale. Details will follow on our website and publications. On behalf of all the MSF staff we wish you happiness and well-being in 2016 and beyond. Jules Kuperberg Alan R. Segaloff Co-Executive Director Co-Executive Director Reflecting on 2015 While Focusing on the FutureReflecting on 2015 While Focusing on the Future Publications Manager Terry Schenker Editorial Coordinator Christopher C. Paine Editorial Committee Kasey Minnis Marianly H. Primmer Dalia Theodule Natalie Blake Alissa Ayden Hildy Berger Jay Hass Contributing Writers Abiodun AkinwuntanPh.D.MPHDRS Hannes DevosPh.D.DRS Joanne Fortunato BSMA David E. Jones M.D. Anson Kowanjko Jeri Murphy Ann Pietrangelo Robert K. Shin M.D. Ben Thrower M.D. Ellen Whipple BSPharm.D. TALK BACKTALK BACK We Welcome Topic Suggestions for Future Issues. Your comments about each issue are important to us. Email comments to editormsfocus.org or write to Editor MSFocus 6520 N. Andrews Avenue Fort Lauderdale FL 33309 Boost your MS IQ with MSFocusmagazine.org A World of MS Information in Your Pocket MSFocusRadio.org Listen on your PC or mobile device Available 247 MSFocus is published quarterly in enlarged type for the benefit of our readers. Audio versions of featured articles are available for listening or download on www.msfocus.org click On Demand Audio. Back issues are available online at www.msfocus.org. MSFocus is a free publication for individuals with MS their families and others interested in MS. Statement of Purpose The purpose of the Multiple Sclerosis Foundations publications is to empower those affected by MS with the information necessary to make the most complete and educated decisions concerning their healthcare. We do not advocate or endorse any specific treatments healing modalities or practitioners. The material presented in this publication is for informational purposes only. For specific advice consult a healthcare professional. MSF does believe that each person has the right to choose the treatments they feel are best and therefore acts as a source of information providing referrals to local resources and partnership in problem solving. FEATURES Vehicle Modifications let you Stay Behind the Wheel 10 When MS puts the Brakes on Driving 13 MSF Brighter Tomorrow Grant Recipients 19 The State of MS Research 23 Screening Success Navigating the TSA Checkpoint with MS 26 When Optic Neuritis Comes Back 30 A Journey of Exploration and Self-Discovery 32 Making Travel More Accessible 35 Beyond MS 2016 National Multiple Sclerosis Education and Awareness Month Theme Revealed 42 Become a 2016 MSF Ambassador 43 Be Cool With The MSF Cooling Program 45 CONTINUING TOPICS As We See It 5 MSF Mailbox 8 Facebook Feedback 9 Voices If Youre Going to Use a Cane Use a Cane 38 PS Whats New 40 Support Group Spotlight 41 Uncle Sams Helping Hand 49 From the Library 50 MSF on the Road 52 Regional Events 53 MS Tech 101 56 Men MS 58 Updates by the Pharmacist 60 MS News 62 Questions Answers 66 I read HALT-MS Trial Hope or Hype in the spring 2015 issue by Ellen Whipple. I am one of the 25 patients fortunate enough to get a stem cell transplant. My diagnosis of MS came in September 2004. Sadly I clinically failed both Rebif and Tysabri. I had relapses on both medications the worst in September 2008 and February 2009. I was accepted into the HALT-MS study in August 2009. A Hickman catheter was placed in February stem cells collected shortly after and frozen for the big day. I was checked into the University of Washington hospital on March 6. Chemo was started shortly after checking in and continued for six days. On March 12 I got my own stem cells back to start building a brand new immune system one that is hopefully free of MS. To be clear a stem cell transplant is not for sissies Chemotherapy is rough with plenty of side effects. You lose your hair. I got a mild case of rosacea and not-so-mild case of shingles in the first two years following the transplant. My body went into menopause which is not uncommon with chemo. All of this was a small price to pay for the results I got. From early 2010 to June 2015 my MRIs were unchanged with no new lesions. I have had no relapses since the transplant. My hope is I continue on this path of no change for many years forever would be ideal. The question I have been repeatedly asked is would you do it again My answer is a resounding yes Kathryn Fierro Anchorage Alaska Editors Note Thank you Kathryn for sharing the story of your life-changing experience with this exciting research. While there are still open questions about this protocol such as the long-term effects of immunosuppressive therapy and whether the treatment will be as effective for those with progressive forms of MS stories like yours offer hope for a better future through further advances in stem cell treatment. I just had to share this because to me it is a blessing and a stress reliever. When I went back to my neurologist two weeks ago for MS he asked me about my memory.These days we all seem to forget but my memory was getting a little worse so he ran a test on me and put me on a tablet for dementia. I said Lord I need my mind with all that is going on with my husband and now my daughter with a mass on her kidney. Dealing with all that can really be tough. Facing an incurable disease I know God will help me and see me through it all. That is when I remembered a story I read in the Summer 2015 issue of MSFocus magazine. I read that story about a little kitten named Lucky a guardian angel by Mr. Bill Walker. That story stays on my mind quite often. And after I read it twice I got up and walked outside looked around and just thanked God. Please keep on mailing me the magazines. They are helpful and very inspirational. Sincerely Nina Faye Jones Lake View S.C. 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 Winter 2016 8 9 MSFocus Winter 2016 Eileen Schlager Pugh There are several challenges but I would have to say the greatest is the fatigue. By the time we reach our destination Im so exhausted that I can barely function and all I want to do is lie down and sleep. Thats right when others are ready to start the trip. Sometimes I feel like Im going to just drop and sometimes I do have to stop and lie down because you can only push so far before your body does what it needs to do. Kessa Englert Connan One of my biggest challenges with air travel is the extreme fatigue afterwards. Ive learned to notify the airline that I will need a wheelchair even though I walk with a cane or walker. Having the wheelchair service helps me conserve my energy by not waiting in a security line on my feet rushing to a gate to catch the flight having a little bit of extra time to settle in on the flight instead of rushing and peace of mind that I will always make it to my connecting flights on time. Flying is still stressful and tiring but the airlines have a great service to help reduce the amount of stress on my body and mind. Lori Whitney-Evans I have several challenges when traveling fatigue for sure and I also have major issues with my bladder and bowels. When I have to go I have to go and it is a very awful feeling to know that once again you are not going to make it to a restroom How do I overcome my personal challenges I believe that God only gives us what we can handle and I deal with it I have MS but MS will never have me Kathy Marbut Plan out your trip. Include restroom breaks fooddrink stops gas and just a break to stretch. Dress comfortably This is if traveling alone while driving. If flying comfy clothing especially shoes. If available ride the trams in airport to save your energy. Ask for help when needed Pack lightly. Take a pillow for your neck if driving or for sleeping if you are the passenger. Patti Rothmann I start planning early on and am a huge list-maker. Once its on my list much of the anxiety is relieved. Family and friends have been so open to potlucks knowing planning and preparing can be very fatiguing. But you have to be willing to speak up and be honest about the need for help I always received such positive feedback. And if you travel via air and have a handicap placard take it with you to use in a rental car or a family members car. Facebook Feedback is your chance to share your experiences related to topics covered in the MSFocus. Like our Facebook page and watch for our next Facebook Feedback post. Our question for this edition was What are your greatest challenges when you travel and how do you overcome them Here are some of your responses Connect with us. Share your thoughts and insights with the MS community on our Facebook pages. Like us at www.facebook.comMultipleSclerosisFoundation and www.facebook.comgroupsmsfocus. Responses have been edited for length and clarity. 10MSFocus Winter 2016 Driving is a fact of life in America. Getting where you need to go often requires being able to get in the car and go from point A to point B and back again perhaps with a few impromptu stops in between. But when you live with multiple sclerosis it may not be so simple.While most people with MS will never require a wheelchair there are those who may require modifi- cations to their vehicle so they can retain their freedom of movement on the open road. The steps involved in staying mobile are getting an evaluation deciding on the vehicle modifications and paying for them. The Evaluation The first part of the process is the initial evaluation. This may be offered at locations such as rehabilitation hospitals veterans centers motor vehicle depart- ments or MS centers. Seek out a driver rehabilitation specialist near you by contacting the Association for Driver Rehabilitation Specialists www.aded.net or a local independent living center. The evaluation will cover physical abilities including vision motion range flexibility and muscle strength reaction time and coordination and the ability to drive with adaptive equipment. Cognitive abilities will also likely be evaluated including decision-making ability and judgment. The consultation will include safety issues and compatibility with the assistive technology. They will look at issues such as your ability to get in and out of the vehicle. The consultation will also include helping you determine the best vehicle for your needs. The Vehicle Modifications The vehicle modification process includes three crucial parts selecting the vehicle selecting the modifications and having the modifications made to the vehicle. The evaluation will determine what modifications you need in order to drive. These modifications will vary depending on the severity of your disability. In some cases you may be able to simply modify the vehicle so you can drive from your wheelchair or a powered transfer seat. In other cases you may have more high-tech require- ments that include By Christopher C. Paine 11 MSFocus Winter 2016 joystick and keypad controls and reduced effort breaks and steering systems. Your vehicle may require hoists and carriers ramps and running boards mechanical hand controls or a left foot accelerator. Once you know what modifications you need you then need to decide on a vehicle. In some cases your existing vehicle may meet the requirements for modification. When deciding on a new vehicle you and the driver rehabilitation specialist need to work together with a qualified vehicle modification dealer to find the right vehicle for you before you buy. For Charles Lee of Leicester N.C. it started with a very basic choice I had to start buying cars with automatic transmissions. Some of the questions you should ask before deciding on a vehicle include the following Do you need a van or will another vehicle do for your required modifications Can your choice of vehicle accommodate the equipment that needs to be installed Once the adaptive equipment is installed will there be enough space to fit other passengers Is there enough space at home and at work to accommodate the vehicle and the possible loading and unloading of a wheelchair Is there enough space to get around if you are using a walker Finally you have to have the modifica- tions installed. Upfitters are professionals who install adaptive equipment into vehicles. They ensure that modifications are suited to the individual and comply with state and federal regulations. There will be some training involved. New and experienced drivers will need to learn how to use the assistive technology installed in the vehicle. You will also need to make sure that a family member or significant other is trained on the devices installed on your vehicle in the event of an emergency. Lastly you will need regular maintenance to ensure that the modifications remain safe and reliable for the life of the vehicle. Paying for Modifications Modifications to a vehicle can be very expensive sometimes running into the tens of thousands of dollars. There are a number of resources available to help defray the cost of modifying your vehicle. The main ways of getting the modifications paid for are your insurance company federal and state programs the car companies themselves and nonprofit organizations such as the Multiple Sclerosis Foundation. The first thing to do is to check with your insurance carrier. Your policy may cover adaptive devices and vehicle modifications. If you are initially denied you always have the option to appeal the decision. The federal programs that help pay for vehicle modifications are Medicare Medicaid and the Social Security Administrations Supplemental Security 12MSFocus Winter 2016 Income program. Under certain circum- stances and following an evaluation Medicare may pay for vehicle modifications. In some cases the program will cover the cost of adaptive equipment after an evaluation by a qualified practitioner has been performed. Medicaid benefits differ depending on the state but often offer benefits not covered by Medicare. Funding requests for equipment are approved on a case-by-case basis. The Supplemental Security Income Plan to Achieve Self-Support program helps those with disabilities to pay for items and services linked to employment. This may include necessary vehicle modifications. For veterans the VA offers a grant program that helps them purchase a new or used vehicle if an injury or disease occurred or worsened during active military service. Finally the IRS may allow you to deduct the cost of your vehicle modifications from your taxes if it qualifies as a medical necessity. State vocational rehabilitation agencies may provide programs to help alleviate the costs of purchasing an adapted vehicle or adding adaptive equipment to an existing one if the vehicle is needed to get to and from work. States that offer assistive technology loan programs may provide help in paying for vehicle modifications.And also check in with your local Center for Independent Living for more information on available state programs. Some automakers offer programs that cover owned and leased vehicles as well as installation of adaptive equipment by third parties. Companies that offer rebates include but are not limited to Ford GM Volkswagen Audi and Toyota. These reimbursements may range from 200 to 1500 depending on the company and the adaptive technology being installed. There are a wide range of requirements and options consult a dealership for more details. Nonprofits such as the MSF may also include programs to help lighten the burden of the cost of modifying your vehicle. Being able to get around is a very important part of living with multiple sclerosis. The freedom and independence that come with being able to drive can greatly contribute to your well-being and livelihood. Modifications to your vehicle can make it easier to stay independent and productive. By working with a driver rehabilitation specialist and knowing your funding options you can remain at the wheel of your life rather than being a passenger. 13 MSFocus Winter 2016 Driving is an important activity of daily living and one that is needed to maintain a good quality of life.As of 2009 there were about 210 million licensed drivers approximately 68 percent of the population in the U.S. However driving is risky and sometimes results in crashes. Driving can be more challenging for individuals with multiple sclerosis. One study showed an accident rate three times higher for individuals with MS than age-matched individuals with no diagnosis of MS. Nevertheless a diagnosis of MS does not automatically mean giving up ones driving privileges. Many individuals with MS continue to drive safely and react to all traffic situations as well as any age-matched individuals with no diagnosis of MS. The burning questions are when is it advisable for an individual with MS to stop drivingWhat are the common signs to look for There is currently no specific guideline for when individuals with MS should stop driving. MS is a progressive neurodegenerative disease. The Expanded Disability Status Scale is used to describe the progression of MS. As the EDSS rating increases from 0 to 10 the ability to continue with safe driving decreases. In a 2009 study led by Maria T. Schultheis of the Department of Psychology at Drexel University in Philadelphia MS drivers reported driving less than those with no diagnosis of MS. Drivers with advanced disease severity EDSS between 3.5-6.5 drove less than those with mild disease severity EDSS between 1.5-3.0. Reasonably safe conclusions that can be drawn from current research on the ability of individuals with MS to continue safe driving include The ability to continue safe driving can be affected by MS. Each case is unique and should be treated individually. As the severity of MS increases the likelihood for impairedunsafe driving performance increases. In the early phase of MS safe driving is usually not a major concern. As MS progresses and one starts to experience any of the signs listed below it is necessary to start discussing continued driving with family members caregivers personal physician or any other healthcare provider. If one starts to experience two or more of the signs below it is necessary to be officially evaluated for fitness to drive. Common signs it is time to evaluate continued ability to drive safely include the following When one starts to be very sensitive to what time of the day to drive because of difficulties with driving at certain times for instance when the preference is to avoid driving during rush hour or Abiodun Akinwuntan Ph.D. MPH DRS and Hannes Devos Ph.D. DRS 14MSFocus Winter 2016 other heavy-traffic periods because of concerns of tiredness slow reaction to traffic and slow decision-making or driving at night because of concerns of poor vision. When one starts to limit the frequency of driving because of concerns of general safety or doubt in the ability to react in a timely and accurate manner to hazardous traffic situations. When one prefers to drive alone because of concern of distraction by the other persons in the car or because of fear that ones impaired driving performance has been observed. When driving remains difficult despite modifying the vehicle as much as possible. When family membersfriendscaregivers andor healthcare providers start to express concern regarding the ability to drive. For personal safety and that of other passengers in the vehicle and other road users it is important for drivers with MS to discuss their driving concerns freely and when necessary perform a fitness to drive evaluation. Such evaluations are usually administered by a driving rehabilitation specialist. Information on the closest DRS can be found at www.aded.net. The evaluation typically involves the assessment of ones reaction time strength and coordination. The abilities to see well and process visual information at the same time are also assessed during the evaluation. The good news is that if detected early there are promising methods that can help with retraining the affected driving skills. Studies are ongoing to look at the best training methods and the potential benefits of training. Dr. Abiodun Akinwuntan is a professor in the departments of Physical Therapy Neurology and Ophthalmology as well as director of the Driving Simulation Laboratory and associate dean for Research in the College of Allied Health Sciences at Georgia Regents University in Augusta Ga. Dr. Hannes Devos is currently Assistant Director of the Simulator Lab and Assistant Professor of Physical Therapy Neurology Ophthalmology and Graduate Studies at Augusta University Augusta Ga. 19 MSFocus Winter 2016 Each year as the Brighter Tomorrow Grant program begins we are more keenly aware of the great needs of individuals in the MS community. The goal of this national program is to provide goods or services up to 1000 value to improve quality of life for those living with multiple sclerosis by enhancing safety self-sufficiency comfort or well-being. Those who have never received a BTG can apply annually from June 1 to Sept. 1. Applicants are asked to provide basic personal and financial information and to write a brief essay of 100 words or less to describe how the grant would help them have A Brighter Tomorrow. In 2015 the Brighter Tomorrow Grant program received nearly 600 applications and 109 of these requests were able to be fulfilled. BTG recipients from around the country received an array of goods and services appliances electronics furniture automotive repairs exercise aids hobby supplies and things that didnt fall neatly into any category. The following recipients shared how their lives improved thanks to help from the MSF. Appliances made up the largest grouping with 37 requests fulfilled. These included washers dryers refrigerators electric and gas ranges and electrical generators. Keeping her cool For Alice Scott of Bristow Okla. keeping things cool was a problem. Her refrigerator didnt keep things cold. Milk will sour in two days she said. A new refrigerator would prevent not just food but her MS medicine from spoiling. After the MSF granted her wish she said It made my life a lot easier. I didnt realize how bad my old refrigerator was. The new appliance means that not only will her milk last longer and her medications be properly preserved it also means that she can buy healthier food. It is helpful. The refrigerator was the best. I thank God every day. 20MSFocus Winter 2016 Spin cycles Lucy Delgado of San Sebastian Puerto Rico recently went to live with her father after living with her sister in Virginia. She discovered her father didnt have a washing machine. Her MS symptoms prevent her from washing her clothes by hand. I cant close my hands and my arms are weak she said. To make matters worse a recent accident destroyed her car making a laundromat out of the question. A washing machine goes a long way to making her tomorrow brighter. This washing machine has been a big relief. Furniture was the second biggest category with 31 wishes granted. An overwhelming number of these were mattress sets. Also included were living room and dinette sets recliners and a sofa. Putting her back into it For Lineada Smith of Chester Pa. its been a trying time since 2010. She lost her bedroom set in a fire. She finally replaced it with a used set then came the bed bugs and the exterminator. I had to get rid of the whole set because bed bugs invaded the mattress inside and out. Suffering from lower back pain she was left to sleep on a couch with no support. A new mattress was just what she needed for relief and rest. Electronics constituted the next largest area of concern for those with MS. The majority of requests were for televisions but also included cameras and an iPad. Worth a hundred words Before MS Diane Bosley Taylor of Pacific Grove Calif. had her photos published in national magazines newspapers travel publications and textbooks. I miss the happiness and hopefulness that brought me she said. I no longer have a camera or even a phone with publishable capacity for photos. I am low income retired and cannot work at all. Taking photos was a joy for me to feel successful at something once again. She was seeking a new camera to brighten her tomorrow. This camera was received a couple weeks ago and already I am clicking away taking amazing shots here on the beautiful Monterey Bay Calif. You have not only made the day I received it brighter but also every time I take a shot and form an artistically pleasing image I will give thanks to your wonderful organization. Many of those seeking a brighter tomorrow were in need of automotive repairs. Most of these were tires. However there were other fixes that were necessary including shocks and the installation of control arms. 21 MSFocus Winter 2016 On the road Devona Kay Smith of Glasgow Ky. travels to her doctors appointments in her reliable 1993 Chevy Lumina. It operates well for her with one important exception.I need some new tires which are too expensive for me to afford she said. I take a chance every time I travel because of these worn out tires. Having a new set of tires for her car really brightened her tomorrow. I dont have to worry about traveling to doctors or anywhere with worn tires. This grant really helped me and I appreciate it more than anyone will ever know. Exercise was important to those with MS with treadmills being the most requested for item along with a Fitbit. Just what the doctor ordered When Jenna Koepf of Fort Lauderdale Fla. was diagnosed with MS at the age of 17 her doctor told her to exercise. She loves to exercise but often feels weak and her body shuts down. In order to stay close to home when she exercises she requested a treadmill. The treadmill just showed up at our house a short time after. It was an amazing service Jennas mother Tina said. There was an extended amount of time this fall where Jennas legs kept going numb and werent functional. We were worried that she wouldnt be able to walk again. Good news her legs are working again and now she is really looking forward to using the treadmill to improve her muscle tone in her legs. She is excited to take the MS on and win. Tangerine dream To help her keep track of her daily activities Camika Craft of WilliamsburgVa. requested a tangerine-colored Fitbit Charge HR.The Fitbit Charge HR would be used to help me maintain a healthier lifestyle with my multiple sclerosis she said.The Fitbit is helping her to keep track of her sleeping routine exercises food intake and weight gains and losses. The constant self-monitoring allows her to take that information to her doctors. It also helps her set goals and gives her the visual cues she needs during the day. Im able to measure the amount of sleep Im getting at night and during the day. Its keeping me motivated to move more than Ive been doing before. 22MSFocus Winter 2016 There were many general requests that were met with the grant of gift certificates. And there were also requests that didnt neatly fall into any category. These included rock and tree climbing classes and tours art supplies service dog adoption a sewing machine a flute and fishing gear. On the hook Kalonie Lopez of Rigby Idaho loves to fish and Idaho is a great place to do that. The opportunity to go fishing again is exactly what she needed. For Lopez fishing was a chance to keep her mind healthy and provide her with exercise and rest. I purchased my fishing license poles tackle and tons of water. I have gone fishing one time since getting everything. In the past I would not waste my money on a fishing license and I would later get in trouble. This time I know that it was a blessing and instead of buying 25 more of fishing tackle I got my license. Plus I have never had a tackle box as full as I do now. Im definitely making plans to go fishing. Sticks and stones A climber of trees as a child Sheri Kucinskas of Honolulu Hawaii scratched climbing off of her to-do list after being diagnosed with MS. Twenty years later I realize those limitations I set were wrong she said. Her request was for adaptive rock climbing equipment and lessons. I believe climbing can give me the confidence to bring other things back into my life that illness erased. When I push myself I discover that the boundaries Ive created arent real. While MS has been a rough ride Sheri feels the future is full of growth and discovery. Climbing forces you to be focused on the immediate not think about the past restrictions. Im excited to get out and experience a new sport. Applications for the Brighter Tomorrow Grant are accepted from June 1 to Sept. 1 of each year. For further information on the Brighter Tomorrow Grant call our Program Services department at 888-MSFOCUS 673-6287 or you can contact us by email at supportmsfocus.org or visit our website at www.msfocus.org Brighter-Tomorrow-Grant.aspx. 23 MSFocus Winter 2016 Multiple sclerosis is an inflammatory condition of the central nervous system that likely occurs when a genetically susceptible individual is exposed to an environmental trigger. Although it is not a very common disease old estimates suggest 400000 affected individuals in the United States it is the most common cause of nontraumatic disability in young adults in the U.S. today. Given this there are numerous groups that advocate for patients with MS including the Multiple Sclerosis Foundation. There is also a tremendous amount of research effort being devoted to understanding and treating the disease for example more than 8000 people recently attended the European Consortium for Treatment and Research in MS in Barcelona Spain last fall. Most research is performed under fairly rigorous conditions increasing the chances that what is learned is actually true and useful for patients with MS. As it is difficult to treat what is not understood much of the research is being aimed at increasing our understanding of MS. One of the big efforts is to identify risk factors for developing MSthe International MS Genetic Consortium has identified more than 150 genes that may increase the risk of MS and work continues to identify potential environmental triggers. Besides continued evidence supporting the role of late exposure to the Epstein-Barr virus the causative agent of mononucleosis and vitamin D deficiency as environmental triggers for MS recent work also suggests that a high-salt diet may be deleterious in animal models of MS. It also appears that the bacterial contents of the gut microbiome may differ in patients with MS compared with normal controls. All of these risk factors seem to relate to the function or control of the immune system. Although there is a lot of buzz on social media about the possibility of specific diets improving MS there is very little data to support these claims although it is interesting that dietary alterations can alter an individuals microbiome. There are currently 12 FDA-approved disease modifying treatments for relapsing forms of MS. The purpose of these medications is to reduce relapses reduce new MRI activity and thereby delay the progression of disability. The most recent addition to the therapeutic arsenal Lemtrada was shown to be superior to an injectable interferon Rebif and appears to have a durable effect after two courses of treatment with a majority of patients in the clinical trials not requiring further treatment at five years. In the past year exciting comparative data for two new disease-modifying treatments daclizumab and ocrelizumab have been released. Daclizumab is a monthly subcutaneous agent that may modulate the immune system by targeting CD25 of interest a CD25 mutation was one of the first genetic abnormalities identified as a risk factor for MS. Ocrelizumab works by depleting By David E. Jones. M.D. 24MSFocus Winter 2016 several types of B-cells involved with antibody-mediated immunity and looks extremely effective in reducing MS activity. It has long been recognized that there is an inflammatory component to MS for which there are multiple disease-modifying treatments as stated earlier. There is also a degenerative component to the disease that is demonstrable early but probably dominates later in the course of the disease however the word degenerative probably overestimates our understanding of this phase of the disease. It is clear that MS affects both the insulation myelin of nerves as well as the wires axons of nerves. It is possible that the degeneration occurs when myelin is stripped from nerves or it is possible that the remaining nerves wear out as they try to compensate for the nerves that have been damaged because of MS. Our lack of understanding of the degenerative component of the disease may explain our difficulty in finding effective treatments for progressive MS although this is not due to a lack of effort. The International Progressive MS Alliance has removed some of the political barriers to funding research in progressive MS and has helped foster cutting edge research regardless of where it is being done. A recently reported small trial of high-dose biotin supplementation suggested benefit for progressive MS but further studies are needed to verify this effect. Although recent trials of Gilenya for primary progressive MS and Tysabri for secondary progressive MS did not meet their primary endpoints it is exciting that the ORATORIO trial of ocrelizumab in primary progressive MS did meet its primary endpoint in a large Phase III trial. Trials of siponimod for secondary progressive MS and ibudilast for progressive MS are ongoing so hopefully the recent positive momentum with progressive MS research continues. Patients often ask why they feel worse when their MRI is reportedly stable. Advanced imaging techniques have demonstrated that conventional MRI does not tell the entire story. This knowledge may enable us to further explore the mechanisms and treatments for MS. Some techniques have allowed us to demonstrate that atrophy of specific parts of the brain occurs early and is often demonstrable at diagnosis others are able to assess the integrity of the myelin around a nerve and show that what appears normal on conventional MRI is not necessarily normal. It is now clear that MS is a disease that affects the entire brain including areas that are primarily the wires of nerves white matter and the cell bodies of nerves gray matter. New PET scan techniques can highlight myelin and may be of value when attempting to demonstrate myelin repair remyelination. One of the largest unmet needs in MS is the ability to repair areas of previous damage andor reverse disability. The Phase III trials for Lemtrada included an endpoint of sustained reduction in disability and were able to meet this endpoint although the magnitude of the change was not large. Even more exciting is the possibility of remyelination a compound anti-LINGO in development by Biogen showed evidence of remyelination in an early study of patients with optic neuritis but the study of the same compound in patients with relapsing MS is still ongoing. Acorda Therapeutics also has a remyelinating agent in early development. Research involving the use of stem cells in MS continues including work with bone marrow transplant autologous hematopoietic stem cell transplantation and mesenchymal stem cells however the role of these techniques still appears more anti-inflammatory and neuroprotective than restorative. 25 MSFocus Winter 2016 Another important aspect of MS care is managing patient symptoms and improving patient functionality. Research continues to try to understand and develop more effective mechanisms for treating fatigue gait abnormalities cognitive dysfunction and other symptoms of MS. Although it may not get as much recognition in the mainstream media advances in rehab technology represent another important cog of MS research. More and more data suggest that physical activity and exercise in any form is beneficial for MS and wellness continues to be an important aspect of the management of chronic disease. The field has come a long way since defining MS as a demyelinating disease that starts as an inflammatory process affecting the white matter of the brain and it is truly remarkable how much has been accomplished since the approval of the first disease modifying therapy for MS in 1993. The future of MS research appears very bright and this is great news for people affected by MS. David E. Jones M.D. is a fellowship-trained MS neurologist who works at the University of Virginia Health System and sees patients in the James Q. Miller MS Clinic. He is the chairman of the MS Section of the American Academy of Neurology and participates on the MS Coalition Emerging Therapies Collaborative. He serves on the Medical Advisory Board of the Multiple Sclerosis Foundation the Healthcare Advisory Committee Council of the Multiple Sclerosis Association of America and the Board of Directors of Can Do Multiple Sclerosis. 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 26MSFocus Winter 2016 Since its creation in 2001 the Transportation Security Administration has been responsible for security screenings in most U.S. airports as well as setting the standards for private firms that carry out screenings for all other flights. The policies of this controversial and frequently criticized agency added a new level of complexity to air travel in the United States particularly for those with medical conditions and disabilities. Moreover several highly-publicized incidents between TSA and travelers with disabilities particularly since the introduction of enhanced screening procedures in 2010 involving full-body scans or pat-downs have made some hesitant about managing the security screening necessary for air travel. If this is a concern for you knowing how to prepare what to expect and what rights you can assert can help you to navigate the screening process successfully. Communicating Your Needs While most travelers may pass through the TSA checkpoint without needing to speak to an officer many of those with MS would need to communicate special circumstances. TSA provides a printable disability notification card on their website TSA.gov which would allow you to discreetly inform a screener of your condition. Any medical documentation of your condition is acceptable for this purpose or you can choose to discuss it openly. Traveling with MS Medications Air travelers are encouraged to keep their medications with them in carry-on baggage in case those medications should be needed in-flight or in the unfortunate event that your checked baggage is lost or misdirected. All medications in solid form pills capsules or tablets can be carried on with no special procedures simply leave them in your carry-on as it is X-rayed at the security checkpoint. What if your medication is liquid such as in the case of injectable MS treatments The TSA requires that you notify an agent in the screening area prior to beginning your screening if you have liquid medications syringes or ice packs. You would be asked to remove these items from your bag for a separate screening. While most liquids must be less than three ounces and placed inside a zip-top plastic bag liquid medications are exempt from this and should not be placed with your other liquid items such as shampoo or mouthwash. Ice or gel packs needed to keep medicine cooled must be completely frozen or they may require additional screening so keep them in the freezer until just before you leave for the airport if you can. Generally your medication and accompanying items would be X-rayed separately from your other belongings and returned to you to be repacked. In 27 MSFocus Winter 2016 rare circumstances TSA may opt to test some of the medication or liquid in a melted ice pack for explosives or take further steps to clear them if the X-ray is unable to demonstrate that they contain no concealed items. It is advisable for all medications to be in their original containers with labels in place. Screening with Mobility Issues All travelers are required to have their person screened for concealed items either by walking through a metal detector standing in an imaging device depending on the technology in place at the airport or by undergoing a pat-down by a TSA officer of the same gender. This creates challenges for those with limited mobility or who rely on mobility or orthotic aids. If you are able to walk and able to stand without support for 5-7 seconds with your arms above your head you are eligible to use the imaging technology though you can always choose to request a pat-down. If you cannot meet one or both of these requirements you would undergo a pat-down. For Imaging Technology Screenings If you use a mobility device but are able to meet the requirements to use the imaging technology your mobility device would be X-rayed or examined separately and returned to you after screening. Be certain you have sufficient strength to stand and wait should there be a delay. If not request a chair or consider opting for the pat-down. Notify the screener if you are using a brace orthotic or other wearable medical device. You may be asked to lift your pant leg to display something such as a leg brace for further inspection or may volunteer to remove it for X-ray but for less conveniently placed devices a private screening should be offered. You are not required to expose any sensitive areas of your body. If you have an implanted medical device for example a Baclofen pump be prepared to provide medical documentation should it show up on the imaging. For Pat-down Screenings Any traveler can request their screening be conducted in a private area. A witness is provided for private screenings. You may also request that a companion family member or caregiver be with you whether your screening is public or private. All mobility aids are subject to exam- ination. Aids for standing or walking are typically X-rayed while you are seated comfortably in a waiting area. Persons in wheelchairs or scooters who are unable to walk and stand will be patted down while seated in their device. Their wheelchairscooter will be visually inspected and patted down including the seat cushions and any non-removable pockets or pouches and may be swabbed for residue of explosives. Any removable bags will be X-rayed. Know Your Rights Should you have questions about the screening process or your specific circumstances TSA provides a helpline for those with medical conditions and disabilities TSA Cares. Find the number and hours in the Resources box below. It is recommended that you call 72 hours in advance of your flight for the most current guidelines. If you have special circumstances you can request in advance that a passenger support specialist be available during your screening. Other Points to Remember Accommodations are made so travelers with disabilities do not have to wait in security lines. If you are not immediately directed to a screening area for people with disabilities ask an officer where to go. You may have a companion caregiver or family member with you during the entirety of your screening. However that person will need to be screened once they are done assisting you. Anyone has the right to opt out of the use of imaging technology and request a pat-down instead. Even if an officer perceives you as capable of the necessary walking and standing to be screened in this way no one should pressure you. You may request reasonable accom- modations such as a chair at any time during the process. If at any time during the screening an issue arises you can request a supervisor or a passenger support specialist for on-site assistance. Should you encounter a problem or think you have been treated unfairly because of your medical condition or disability you can file a complaint with the Department of Homeland Security the government agency that oversees TSA. See Resources box. With advance knowledge and prepara- tion and a little patience you can navigate security screenings successfully and make it to your gate on time RESOURCES TSA Cares 855-787-2227 TSA-ContactCentertsa.dhs.gov Weekdays 8 a.m. - 11 p.m. ET WeekendsHolidays 9 a.m. - 8 p.m. ET Information for travelers with special needs httpswww.tsa.govtravelspecial-procedures How to file a complaint httpwww.dhs.govhow-do-ifile-travel-complaint-dhs-trip 28MSFocus Winter 2016 Considering Organizing a Local Fundraiser Team MSF Friends Family Co-Workers and You A Winning Combination for Success Join community members across the country dedicated to raising much needed funds for expanding MSFs programs and services through local events. Share your ideas whether large or small. Well also show you what has successfully worked for others. Help make a difference in peoples lives and have fun doing it. Contact Hildy Berger MSF Regional Events Coordinator at 800-225-6495 or email hildymsfocus.org. 29 MSFocus Winter 2016 MARK YOUR CALENDARS MARCH 20 26 2016 RELAPSE AWARENESS WEEK A collaboration of the Multiple Sclerosis Foundation and Multiple Sclerosis Association of America with support from Visit www.msfocus.org to learn about this education and awareness campaign. MSFocus Fall 2015 30 Optic neuritis is a vision problem caused by inflammation or demyelination of the optic nerve the nerve that connects the eye to the brain. Optic neuritis can occur by itself idiopathic optic neuritis or may be associated with demyelinating diseases such as multiple sclerosis or neuromyelitis optica NMO or Devics disease. More than half of all people with MS will experience optic neuritis at some point in their lives. In fact for 15 percent to 20 percent of people with MS optic neuritis will be the first sign of the disease. Not all people who get optic neuritis however will go on to develop MS. Many studies have examined this relationship between optic neuritis and MS over time. Depending on the study the risk of developing MS after an episode of optic neuritis varies from 42 percent to 63 percent roughly 5050 odds. Brain MRI can help to predict which people with optic neuritis will go on to develop MS. People with optic neuritis who have a normal brain MRI scan have a relatively low risk of going on to develop MS ranging from 8 percent to 25 percent depending on the study. People with optic neuritis who have demyelination spots plaques or lesions on their brain MRI have a much higher risk of developing MS possibly as high as 80 percent. Though this risk is significant and much greater than the risk of MS in people who start out with a normal brain MRI it should be noted that 20 percent to 40 percent of the high-risk people in these studies who had an episode of optic neuritis did not go on to develop MS even after many years of follow-up. People with optic neuritis usually notice blurry vision or hazy vision affecting one eye. Less commonly both eyes can be affected at the same time. Often the center of vision is involved but any part of the visual field may be affected. People with optic neuritis may describe the blur as a film over their eye or a smudge. Colors may seem faded or less intense in the eye affected by optic neuritis. Optic neuritis is almost always associated with some eye pain or discomfort especially with eye movements which may be described as an ache or sticking sensation behind the eye. In optic neuritis the blurring of vision may gradually worsen over the course of a week or so. Afterward there is usually a gradual recovery of vision occurring over four to six weeks though additional recovery may occur over six to twelve months or longer. Intravenous steroids commonly methylprednisolone also known as Solu-Medrol are often given to treat optic neuritis. Typically 1000 mg of IV methylprednisolone are infused daily for three to five days. IV steroids do not appear to improve the ultimate visual outcome but they do seem to speed up the recovery of vision. High doses of oral steroids for example 1000mg of prednisone per day given every other day for a total of three to five doses may also be used. Low doses of oral steroids in the range of 60 mg to 100mg per day seem to be associated with an increased risk of a recurrent episode 31 of optic neuritis and should be avoided. With or without steroid treatment optic neuritis almost always gets better though the vision in the affected eye may not return 100 percent.Vision in that eye might not be as clear as before and colors may remain faded or washed out. Depth perception or 3D-vision is often not as good after an episode of optic neuritis making it more difficult to judge distances as when climbing stairs or reaching for objects. Optic neuritis may be a one-time-only event however approximately 15 percent to 20 percent of the time it can come back in the same eye or may develop in the other eye. When optic neuritis returns it is called recurrent optic neuritis. Recurrent optic neuritis is generally treated with IV steroids just as a single episode of optic neuritis might be. The visual outcome after recurrent optic neuritis probably has less to do with how many episodes of optic neuritis have occurred and more to do with what is the underlying cause of the optic neuritis. Most of the time when optic neuritis is recurrent the patient either has or is ultimately diagnosed with MS. In these cases visual recovery is generally good though not guaranteed. It is possible however for recurrent optic neuritis to occur in the setting of NMO as well and when it does visual recovery may not be quite as good. A blood test NMO-IgG that identifies antibodies specific to NMO may be helpful in distinguishing MS from NMO. Sometimes recurrent optic neuritis occurs without any evidence of either MS or NMO. This disorder known as chronic relapsing inflammatory optic neuropathy is somewhat poorly understood. Eye pain can be more severe and long-lasting with CRION than the mild aching seen with optic neuritis associated with MS. Vision loss may be more severe with CRION as well. Fortunately both the pain and the vision loss associated with episodes of CRION generally respond very well to IV steroids but if steroid treatment is stopped CRION may come back. Therefore sometimes prolonged steroid treatment or additional immunosuppressant medications are necessary. Most of the time recurrent optic neuritis has the same significance as any other series of relapses or exacerbations seen with MS and should be treated as such. For patients who were originally diagnosed with idiopathic optic neuritis recurrence of optic neuritis might prompt a visit to a neurologist in order to find out if MS is likely or not. For people who already have a diagnosis of MS it may still be important to see a neurologist if optic neuritis recurs to review MS treatment options. Sometimes however recurrent optic neuritis may be a clue that there is a different process occurring such as NMO or CRION. In those cases recurrent optic neuritis might prompt additional testing or a change in which medications are used for treatment and for how long. Dr. Robert K. Shin is a Professor in the Department of Neurology at MedStar Georgetown University Hospital. He specializes in multiple sclerosis and neuro-ophthalmology. MSFocus Winter 2016 32MSFocus Winter 2016 Wendy Booker was standing at more than 23000 feet elevation.She was fighting nausea imbalance a partially numb face a weak left arm and severe numbness and tingling on the left side of her body but continued to persevere. She was about 6000 feet away from reaching her ultimate goal climbing to the top of the world the summit of Mount Everest the worlds tallest mountain. She had already started taking oxygen a necessity for such high altitudes. I know Mount Everest is a lofty goal but it was mine Wendy said. She first tried the same climb a year earlier but conditions forced her to decide to turn around. One year later she was faced with the same decision on the same mountain. Continuing the climb could mean either reaching her ultimate goal of being on top of the world or possibly risking her health life and teammates lives. Wendy called it horrendously difficult when she decided to turn around again. She admitted after descending the mountain she doubted whether she made the right choice. It was a tough call for Wendy because she had grown up believing that adversity can be overcome with hard work. I came from a family that believed its not what happened to you in life its how you deal with it. Its just part of who my family was Wendy said. Her parents who had lived during World War II had instilled in her an attitude of determination and grit. Those are the same values Wendy instilled in her three sons. Her two oldest were teenagers and her youngest was eight years old when she was diagnosed with relapsing-remitting multiple sclerosis. At the time the 44-year-old was numb on her left side from her toes to the top of her rib cage a symptom she has always had since diagnosis. Despite the constant tingling and numbness she still has motion in her body. At first her family was scared so she wanted to put a good face to it. Months before being diagnosed Wendy had taken up running and had just signed up to run the Boston marathon. Wendy thought Whats the worst that can happen Im going to end up in a wheelchair Well that could happen from the MS or from the marathon. Less than two years after her diagnosis Wendy crossed the finish line at the Boston marathon. Running more than 26 miles with MS gave her strength. That was my first mountain. Wendy was eager to see what else she could do. By Marianly H. Primmer 33 MSFocus Winter 2016 A few years later Wendy got the opportunity to climb Mount Denali until recently known as Mount McKinley. This Alaskan peak is the highest in North America infamous for its glaciers and frequent ice falls.Wendy had never climbed a mountain or even camped before deciding to accept the challenge. She was a self-proclaimed girly girl. There was no showering bathrooms or clean clothes. During the climb she carried her essential belongings on her back. She and six men began climbing in an unguided expedition something which she now recognizes to be very risky. About one month later Wendy reached the top becoming the first person with MS to summit Mount Denali. Thats where she had a realization This has nothing to do with climbing Denali this has everything to do with multiple sclerosis. Wendy said the mere act of climbing makes people feel like they have MS because of the imbalance that comes with high altitudes. We all have our mountains. MS is my mountain. At more than 20000 feet elevation at the top of a snowy hazy mountainWendys purpose became clear. Youve got your mountainwhat are you going to do with it Wendy began the Climb On Foundation an organization dedicated to helping newly diagnosed people with MS come to terms with their diagnosis and gain resources in order to find what they are passionate about and achieve success. Find something positive that you love to do. Find your passion and while you are doing it you forget that you have MS for the time that your mind is engaged. Wendy said it could be anything playing guitar or learning a language. Wendy also believes the first year of a persons diagnosis is critical because it serves as the foundation for the rest of their MS journey. She believes a positive attitude combined with the right disease modifying therapy can have life-changing effects. Wendy has dedicated her time to carrying the message of hope for individuals with MS and has spoken at conferences in front of hundreds of people. Exactly what your mountain is doesnt matter. What truly matters is that you find a way to push beyond the obstacles in your life to discover your passion and achieve more than you ever thought possible Wendy said on the home page of her website. She went on to climb the highest mountains and reach summits around the world except Mount Everest. Wendy found herself at the center of an ironic situation the woman who had encouraged so many others couldnt reach her own goal. Wendy was in disbelief as she descended Mount Everest without reaching the summit for the second time. She called it a profound moment when the disease had won and she had a self-learning experience. Im not above this disease at all. It was a humbling experience that MS is forbidding me from doing what I want. She says she threw herself a pity party because she could not climb to the top of the world. But it didnt last long. Wendy remem- bered what her parents taught her when she was a kid Its not what happened to you in life its how you deal with it. Instead of giving up on reaching the top of the world she changed the way she would reach the top. Her attitude of determination and grit was back. Wendy set off on an expedition to reach the North Pole the true top of the world. She participated in a dogsled and ski expedition that took her through unsteady ice with pressure ridges and open water leads. She spent about two and a half weeks in the freezing cold. On April 23 2011 the day before her 57th birthday Wendy Booker became the first person with MS to reach the North Pole. Once she pulled out her GPS and got confirmation there were hugsyellingjumpingand crying. That was more profound than reaching the top of every other mountain. A wave of elation came over her. I finally stood on the top of the world. You can read a first person account of Wendys journey in her book New Altitude Beyond Tough Times to the Top of the World available on Amazon.com and you can find more information about her on wendybooker.com. 34MSFocus Winter 2016 When I travel on my own whether to a neighboring state or across the country my arrangements are fairly simple book an inexpensive flightfind a cleanconvenient hotel and rent an economical vehicle. However when I travel with my step- daughter Carrieanna who has MS and uses a wheelchair I must pay attention to accessibility and her energy level while making travel arrangements. She and I have traveled together frequently during the past decade and with the help of resources such as SNG Certified Accessible Travel Advocates and the Barrier-Free Travel books we have learned how to make the experience as easy and enjoyable as possible. Transportation Air Direct flights are our preference. Changing planes and hurrying from one gate to another takes a lot of energy.When we are unable to get a nonstop flight we need at least 90 minutes between connections two hours is better. Because the seats with the most leg room first row andor bulkhead are generally the most popular the sooner we can make airline reservations the better. If those seats are unavailable we try to sit as near to the front as possible so that if Carrieanna must ride on the aisle chair its a short trip. Arriving at the airport early Carrieanna uses the first class line to get her boarding pass and check her luggage. For a direct flight we often use curbside luggage check-in. When she arrives at the gate she lets the airline personnel know that she will need assistance boarding and that her wheelchair will need to be folded and stowed once she is on the plane. If we have not secured front-row seating she asks if its possible for her to switch to one of those seats. It never hurts to ask. If airport personnel offer to push the wheelchair to or from the plane or to a distant gate we accept. They know the terrain and any potentially wheelchair- tipping areas as well as the easiest and most direct path to our next gate. They always appreciate a nice gratuity. While persons needing assistance are entitled to early boarding Carrieanna often chooses to be among the last. Since shes always one of the last to disembark this shortens the amount of time she spends sitting on the airplane. There is one important tip that fortunately we have not needed to use. If we encounter a flight or accessibility- related problem at the airport the Complaints Resolution Official on site must be available to resolve the problem. 35 MSFocus Winter 2016 By Jeri Murphy Transportation Ground Because the step up into a standard airport shuttle is often too high for a tired disabled traveler and a taxi would not have room for the wheelchair when we are being picked up at the airport we request a vehicle with a wheelchair lift. Weve had success with Super Shuttle. However we usually rent a car at our destination and have found that an Intermediate SUV is the right size vehicle for our needs. The cargo area is large enough to store the wheelchair and its generally neither too low to the ground nor too high for Carrieanna to easily transfer from wheelchair to passenger seat. Lodging Choosing a hotel with a wheelchair- accessible room seems like it would be easy but there are challenges. We need a room with two beds and often the ADA room only has one queen or king-size bed. So we have to shop around. We always bring a mattress protector for Carrieannas bed. And because bed height is not regulated by the ADA she has on occasion had a bed thats too low for her to easily get in and out. The room must also have a roll-in shower and I know I must be very specific in my inquiries because accessible seems to have a very broad definition in the lodging industry. An off-site reservation agent may not fully understand that a tub with a shower chair is not the same as a roll-in shower. While Carrieanna can sometimes transfer herself onto a shower chair in a tub-and- shower combo the amount of extra energy necessary to make that transition is often not worth the trouble. I prefer to contact the hotel directly and ask that they visit the accessible room to confirm the bathroom configuration. An additional resource is the housekeeping department they clean the room so they know the shower setup. I also ask that the bathroom doorway be measured to ensure that its wide enough for her wheelchair to roll through. Otherwise maintenance may need to remove the door which of course also diminishes privacy. With patience trial and error and the assistance of our resources we have learned how to make travel a little less challenging and therefore a lot more enjoyable. And its worth it 36MSFocus Winter 2016 Jeri Murphy is a traveler photographer writer and non- denominational minister. Her blog Anything is Possible Travel is inspired by Carrieanna her stepdaughter and frequent travel companion who in spite of receiving a diagnosis of MS 12 years ago not only believes that anything is possible but also that if you havent tried you dont know if you can do it. 38MSFocus Winter 2016 If Youre Going to Use a Cane Use a Cane By Ann Pietrangelo You dont think much about walking. You just do it. You put one foot in front of the other and go from here to there without a thought until you can no longer do that without a great deal of effort. I was in my early forties when walking suddenly became a problem. That whole one foot in front of the other thing wasnt so easy anymore.About six months later I was diagnosed with relapsing- remitting multiple sclerosis. A lot of things contributed to my inability to get across the room. I couldnt feel my legs very well except feeling they were so heavy. My feet felt as though I was walking barefoot over broken glass. And balance was definitely a problem. But I knew how fortunate I was to be able to walk at all and I didnt want to squander that good fortune. My husband Jim bought me a metal cane to see if that would help and it did. But I wasnt too keen on taking it public. So began my online search for a practical and suitable cane. Being the fade-into-the- wallpaper type I frantically searched for a fade-into-the-wallpaper cane. Something inconspicuous. Something no one would notice. Preferably something invisible. Jim caught me in the act and looked at me as though Id lost my mind. Are you kidding me he said. If youre going to use a cane then use a cane He wasnt the least bit embarrassed that his wife needed a cane so why should I be The result was a bright red cane with a multicolored paisley pattern. That cane saw me through some very trying times. It also got me a lot of attention some funny looks some welcome compliments and some not-so-welcome lecturing. I got a lot of unsolicited advice about why I shouldnt use a cane at all Itll make you dependent. You wont be able to get along without it ever again Learn to walk without it Youre too young Well that turned out to be bogus advice. The cane didnt make me dependent. In fact it helps me retain my independence during relapses. It gives me the confidence to run my own errands and walk without bumping into walls or other people. When my relapses subside Im thrilled to put the cane away and strike out on my own again. I have quite the cane collection these days even though my MS has been fairly tame for the last several years. My point is this If you need to use a cane or any other assistive device its nothing to be ashamed of no matter what your age. Its not about giving in to MS. Its about taking charge of MS Ann Pietrangelo is an MSF Ambassador. Shes also a freelance writer and the author of No More Secs Living Laughing Loving Despite Multiple Sclerosis and Catch That Look Living Laughing Loving Despite Triple-Negative Breast Cancer. She and her husband Jim live in Williamsburg Virginia. Visit AnnPietrangelo.com and follow on Twitter AnnPietrangelo. Visit Our Website At www.HeatReliefDepot.com Receive a 10 Discount Use Coupon Code MSF Or Call Us Toll Free 877-879-1450 Warming Vests Hand Foot Warmers Warming Cushions Herbal Wraps Heat Packs More Cooling Vests Neck Wrist Coolers Fans Sunscreens Hats Caps Visors Misting Products More Your Place For Personal Cooling Warming Products HEAT RELIEF DEPOT Or Call Us Toll Free 877-879-1450 Show Your Support for the Visit www.zazzle.commsfocus 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... 39 MSFocus Winter 2016 40MSFocus Winter 2016 Going Beyond MS As announced on page 42 Beyond MS is our theme for National MS Education and Awareness Month 2016 this March. You will find more details there about the theme and how to request your awareness kit. Awareness of MS among the general public is an important part of the NMSEAM effort. Help the MSF to go Beyond MS by reaching those out- side the MS community. In each awareness kit is a booklet designed to educate those unfamiliar with MS about the condition and the challenges people with MS face. Share it with a friend neighbor or coworker and ask them to pass it along. You can request additional print copies and digital copies will be made available through our website www.msfocus.org. The booklet includes a donation envelope let them know that donations support the programs that you benefit from including this magazine that is provided free of charge thanks to such financial gifts. Another way to help is to follow the MSF on social media share the information we post and encourage your friends and family to do so. Every time a post is shared the reach of that post increases dramatically and awareness of MS is raised. Check page six for a list of our social media accounts. With your help NMSEAM 2016 can be the most successful awareness campaign for MS yet Womens Booklet A new booklet specifically focused on women and MS is now available. The booklet by Dr. Maria Houtchens and Dr. Katherine Standley offers advice about issues that directly affect women including pregnancy medications breastfeeding menopause CAM self-image screenings and exercise. To get a free copy call 888- 673-6287 or email supportmsfocus.org. Make the call to the MSFocus Radio comment line Feel like commenting on something you heard on MSFocus Radio or read in MSFocus Magazine Call MSFocus Radios new comment line. Do you have questions for one of our medical experts Call us any time at 855-MSF-1515 673-1515. In our office Support Group Program clerk Sofia Guardado performs administrative support tasks for the MSFs Support Group Program and Independent Support Group Network. She is currently pursuing a Bachelors degree in Exercise Science and Health Promotion at Florida Atlantic University. She plans to pursue a graduate degree in physical therapy. I am excited to be part of the Multiple Sclerosis Foundation. It is rewarding to help the MS community utilize the MSF Support Group Program and help in providing information for a better quality of life Sofia said. By Alissa Ayden The Multiple Sclerosis Foundation Independent Support Group Network is growing Please welcome the following newly-affiliated groups Columbus MS Friends Support Group Westerville Ohio Daytime Roanoke Valley MS Support Group Roanoke Va. Knox Area MS Support Group Knoxville Tenn. MS Made Strong Support Group Flagstaff Ariz. New Generation of MS Support Group Islip N.Y. Ozark Area MS Support Group Van Buren Ark. 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. 2015 was a great year for the MSFs Support Group Program and Independent Support Group Network. Here are just a few statistics Twenty-four MS support groups joined the MSF Independent Support Group Network. More than 5000 people across the United States were provided with support education and empowerment through participation in the MSF Independent Support Group Network. More than 70000 flyers were created designed printed and mailed to inform the MS community about local support group meetings. In 2016 we look forward to continuing to motivate educate and empower people with MS across the country through participation in support groups. We are currently debuting brand new support group meeting flyers featuring a colorful modern and eye-catching design to help us more effectively get the word out about our wonderful affiliated support groups. We are also releasing a redesigned updated manual for affiliated support group leaders to more effectively help them create build and grow successful MS support groups. As always if you are interested in applying to start or affiliate a support group please contact Alissa Ayden at 888-MSFOCUS 673-6287 or alissamsfocus.org. 41 MSFocus Winter 2016 42MSFocus Winter 2016 Beyond MS is our theme for the 2016 National Multiple Sclerosis Education and Awareness Month NMSEAM in March. MS affects more than your body and mind it can affect your finances your relationships your career even your independence. If the challenges of managing a disease like MS go beyond the symptoms you experience then the management of your disease must go beyond the walls of your neurologists office.This years National Multiple Sclerosis Education and Awareness Month theme Beyond MS represents an effort to help you recognize barriers to enjoying your best quality of life and learn how to move past them. This year well provide you with a toolkit to help you overcome the hurdles that stand in your way when it comes to finances healthcare and staying active. That toolkit includes advice checklists resources and advocacy tips. With help and determination you can overcome many of the obstacles MS creates. Together lets break through those barriers and move Beyond MS. To learn more or to receive a MS Awareness Kit please call 888-MSFOCUS 673-6287 or visit www.msfocus.org. 2016 National Multiple Sclerosis Education and Awareness Month What Is National MS Education and Awareness Month National MS Education and Awareness Monthis an effort by the Multiple Sclerosis Foundation MSF to raise the publics awareness of multiple sclerosis. The vital goals of this campaign are to promote an understanding of the scope of this disease and to assist those with MS in making educated decisions about their healthcare. Efforts to raise awareness of MS take place across the country. Awareness kits and instructions are available from the MSF for those who wish to become involved in the effort. Anyone affected by or interested in learning more about MS is invited to participate in activities and to broaden their understanding of MS throughout the month. All MS organizations are encouraged to participate. Beyond MSBeyond MS 43 MSFocus Winter 2016 This spring the MSF will choose people with MS from around the country to serve as ambassadors. These people will become leaders in the MS community by Representing the MSF in their local community. Attending local and regional MSF events. Working with the MSF to organize and host fundraising or awareness events. Speaking at support groups and health fairs. Participating in public outreach and more Selectees will have the chance to participate in leadership training to help them become advocates for MS awareness and work closely with the MSF to help meet their advocacy goals. So tell us how you would get the word out Be creative write an essay record a video include photos or do a slideshow presentation. Applications can include an essay video or mixed-media presentation. Essays must be 1000 words or less. Videos are limited to five minutes. Photos videos essays and other materials submitted to the MSF will not be returned. Entries must be postmarked or time- stamped by April 15 2016. Ambassadors grant the MSF the right to use their name and photograph in connection with this program. Ambassadors may be asked but are not obligated to travel within their region to attend MSF programs. Ambassadors may be asked but are not obligated to speak with members of the media about MS. Official Guidelines Entries must meet the following criteria MSF AMBASSADOR ENTRY FORM Name ________________________________________________________________________ Address ______________________________________________________________________ City _______________________________ State __________________ Zip ______________ Day Phone __________________________ Alternate Phone _________________________ Email Address ________________________________________________________________ Are you comfortable talking about your personal experience with MS K Yes K No Are you now or have you been in the past a spokeperson for a K Yes K No pharmaceutical company or another MS organization If yes please indicate for whom you served _____________________________________ Are you willing to travel to attend MSF events and do you have K Yes K No access to transportation to do so Please attach this form to your entry. You can enter three ways K Essay Limit of 1000 words or fewer. K Video Presentation Limit of five minutes or less. K Multimedia Presentation Slideshow presentation using text pictures andor sound. Be as creative as you like but your entry must answer the following questions A Why is the MSFs mission important to you B What qualities or past experiences make you a good candidate for this volunteer position C Briefly how does MS affect your life on a daily basis D What is the most important message to get out about MS and how would you do it Entries will be accepted through the mail and online. Both must be received or time-stamped by April 15 2016. See www.msfocus.org for instructions for submitting your application online. Video entries will be accepted in video or DVD format or by email link to awarenessmsfocus.org. Multimedia presentations may be submitted as PowerPoint files or auto-executable files on CD or DVD. Selectees will be notified by May 15 2016. Mail to The Multiple Sclerosis Foundation Awareness Committee 6520 North Andrews Ave. Fort Lauderdale FL 33309 Additional applications can be obtained by calling 1-888-MSFOCUS 673-6287. 45 MSFocus Winter 2016 If youre heat sensitive the summer months can be a real drag. Among the 60 to 80 percent of people with MS heat has a negative effect.As the body temperature rises weakness fatigue visual distur- bances and other symptoms can become aggravated and temporarily worsen. Heat can alter the passage of nerve impulses causing a feeling of weakness especially in the limbs. According to the Rocky Mountain MS Center one study showed that cooling the core body temperature by just one degree Fahrenheit produced an improvement in some symptoms. Cooling is a relatively easy treatment that often brings rapid relief such as improvement in muscle strength fatigue and balance. While its true that heat may intensify MS symptoms cooling can offer significant relief. You dont have to spend the whole summer in your air-conditioned home. Keeping your body cool can help you reclaim the summer months and the outdoor activities you enjoy such as gardening fishing walking biking family outings barbeques and baseball games. The MSFs Cooling Program was born out of high demand from the Assistive Technology Program in 2001. With a starting budget of around 5000 it has grown into a nearly 100000 program with its own support services coordinator. In 2015 the MSF received more than 1200 applications and approved 790 requests for cooling aids. This year you can experience the benefits of cooling through the MSFs Cooling Program. The program offers a variety of items free of charge. According to Vicki Knobel who has managed the Cooling Program since 2013 We offer a couple different types of vests. We offer a fashion vest that comes in different sizes and colors. We offer an evaporative vest that comes with a necktie wrist bands and hat. We also offer a one-size-fits-all full vest and under vest. For one recipient Ronn Rettman of WestlandMich.the Cooling Program made a big difference. I dont pass out anymore from the heat he explained. He received a cooling jacket vest and handkerchief in June of 2015. He appreciates the pockets in the items he received that allow him to use either hard or soft cooling packs. The cooling gear he received had an important practical benefit for him. It helped me with shopping. The Cooling Program is such a benefit to the MS community Derrick Lee associate director of Quality of Life Programs and Services said. The Foundation is definitely proud that we are one of the leaders in providing cooling products to the MS community. The Application Process The program cycle begins on Feb. 1 and continues through June 1. Applications can be submitted online or through the mail. All applications are confidential and will be reviewed by the grant committee. For more information on the MSF Cooling Program or to access these services call 888-MSFOCUS 673-6287. FOR OFFICE USE ONLY II VH II VF II H II NTB II P hnw COOLING PROGRAMCOOLING PROGRAM QUALIFICATION APPLICATION Please Print Last Name ____________________________________First Name_____________________________ Street no PO boxes____________________________________________________ Apt. ___________ City ______________________________ County_______________ State ________Zip ___________ Phone ____________________ Email ________________________ Date of Birth _______________ Alternate Contact _______________________ Relationship ____________ Phone _____________ Physicians Name __________________________________________________Phone _____________ When were you diagnosed with MS _____________ Current major symptoms _______________ ______________________________________________________________________________________ May we leave a detailed message about this application on your voice mail or with another household member if you are not available II Yes II No Please include a written confirmation of diagnosis of MS from your physician. Do you or your spouse have medical insurance II Medicare II Medicaid II Private carrier Monthly gross income _________ Monthly expenses _________ Disposable income ________ Choose One Option Only ____ Steele Classic Cooling Vest Kit Universally Sized Color II Blue II Tan includes the vest and 2 sets of 15oz Gel Ice Thermo-strips ____ Steele Cool UnderVest Kit Universally Sized Color Tan Only includes the vest and 2 sets of 15oz Gel Ice Thermo-strips ____ Polar Cool Comfort Evaporative Kit full vest hat necktie wristbands Size II S II M II L II XL II XXL II XXXL - Color II Blue II Tan Hat II bucket hat II baseball cap II straw hat ____ Polar Fashion Vest Kit full vest necktie - Color II Black II Tan II Baby Blue II Pink II Female Vest II Male Vest - Size II S II M II L II XL II XXL II 3XL Type of Cooling Pack II Kool Max Water-Based Cooling Pack II 58 Degree F Phase Change Pack ____ Heat Relief Depot Accessory Package hat necktie wristbands Hat Size II S II M II L II XL - Color II Navy II Khaki II I hereby release and hold the Multiple Sclerosis Foundation Inc. harmless from against and in respect of all claims injuries actions demands suits losses liability or other damages that may be incurred as a result of accepting goods or services. Patient Signature ____________________________________ Date ___________ Send your completed application to The Multiple Sclerosis Foundation 6520 North Andrews Avenue Fort Lauderdale FL 33309 ACTHAR ANOTHER WAY TO TREAT MS RELAPSES IN ADULTS ACTHAR MAY HELP SPEED RELIEF OF YOUR MS RELAPSE TALK TO YOUR DOCTOR AND LEARN MORE AT ACTHARMSRELAPSE.COMSTORIES WHERE YOU CAN HEAR PEOPLE SHARE THEIR EXPERIENCE WITH ACTHAR Christine Paul Maby and Katrina Actual Acthar patients who share their MS relapse stories USES H.P. Acthar Gel repository corticotropin injection is indicated for the treatment of acute exacerbations of multiple sclerosis in adults. Controlled clinical trials have shown Acthar to be effective in speeding the resolution of acute relapses of multiple sclerosis. However there is no evidence that it affects the ultimate outcome or natural history of the disease. IMPORTANT SAFETY INFORMATION You should not take Acthar if you have A skin condition called scleroderma Bone density loss Any infections Eye problems such as ocular herpes simplex Had recent surgery Stomach ulcers or a history of ulcers Heart problems High blood pressure Allergies to pig-derived proteins Been recently given a vaccine or are about to take one A condition where your adrenal glands produce either too much of certain hormones as with Cushings syndrome or not enough adrenal insufficiency Never inject Acthar directly into a vein and always take Acthar as prescribed by your doctor. Never stop treatment suddenly unless your doctor tells you to. Try not to miss any scheduled doctors appointments as it is important for the doctor to monitor you while taking Acthar. Acthar can cause side effects similar to those with steroid treatments. Tell your doctor if you have any of the symptoms listed here. Increased risk of infections. You may be more likely to get new infections.Also old infections may become active. Signs of infection are fever cough vomiting or diarrhea. Other signs may be flu or any open cuts or sores Adrenal gland changes. Taking Acthar long term may cause symptoms of Cushings syndrome such as upper body fat rounded moon face bruising easily or muscle weakness Increased blood pressure body salt and fluid. Your doctor may recommend changes to your diet Unpredictable response to vaccines. Talk to your doctor about which vaccines are safe to use when taking Acthar Masking other conditions. Tell your doctor if you have any infections changes in weight excessive tiredness increased thirst fast heart rate or difficulty breathing Stomach or intestinal problems. Acthar may put you at increased risk for bleeding from the stomach or getting stomach ulcers.Tell your doctor if you have any pain in the stomach area vomiting or bloody or black stools Changes in mood or behavior. You may be irritable have mood swings be depressed or have trouble sleeping Worsening of other medical conditions including diabetes Eye problems such as cataracts glaucoma or optic nerve damage Allergic reactions. Tell your doctor if you have a skin rash swelling or trouble breathing Bone density loss. Acthar may cause osteoporosis at any age Potential harm to unborn baby. Tell your doctor if you are pregnant or plan on becoming pregnant The most common side effects are similar to those of steroids.They include Fluid retention Changes in blood sugar Increased blood pressure Behavior and mood changes Changes in appetite and weight Specific side effects in children under 2 years of age include Increased risk of infections Increased blood pressure Irritability Symptoms of Cushings syndrome Cardiac hypertrophy thickening of the heart muscle Weight gain The above side effects may also be seen in adults and children over 2 years ofage. These are not all of the possible side effects of Acthar. Tell your doctor about any side effect that bothers you or that does not go away. You may report side effects to the FDA. Call 1-800-FDA-1088 or visit www.fda.govmedwatch.You may also report side effects by calling 1-800-778-7898. Please see adjacent page for Brief Summary of Acthar full Prescribing Information. H.P.Acthar Gel and Questcor are registered trademarks of Questcor Pharmaceuticals Inc. a Mallinckrodt company. 2015 Mallinckrodt. PM-01-01-1976a 615 Printed in USA Important information about H.P. Acthar Gel. Please read this summary carefully and ask your doctor about Acthar. No advertisement can provide all of the information needed to determine if a drug is right for you or take the place of careful discussions with your healthcare provider. Only your healthcare provider has the training to weigh the risks and benefits of a prescription medicine. What is the most important information I should know about H.P. Acthar Gel Acthar can cause serious side effects including 1. Increased risk of infections. Acthar affects your immune system. Therefore patients may be more likely to get new infections or inactive infections may become active. Tell your doctor right away if you have any signs of infection such as fever cough vomiting diarrhea or sign of illness or flu or any open cuts or sores. 2. Adrenal gland changes. Acthar has effects on the adrenal gland. When a patient is taking Acthar their adrenal gland may produce too much of a hormone called cortisol. This can cause symptoms of Cushings syndrome upper body fat rounded face thin skin which is more common in patients who take this medicine for a long time. When a patient stops taking Acthar after a long time the body may not produce enough cortisol on its own adrenal insufficiency. The doctor may prescribe a steroid medicine to protect the body until the adrenal gland recovers. Do not stop administering Acthar without talking to your doctor first. 3. Blood pressure changes. Blood pressure should be checked during treatment your healthcare provider may instruct you to make some dietary changes. Acthar may cause an increase in blood pressure. 4. Increased amount of water in the body increased body salts and low potassium in the blood. Acthar may cause your body to have an increased amount of body salts and water that stays in the body and may lower the amount of potassium in the blood. Your doctor may instruct you to make some dietary changes. 5. Vaccine eligibility. Patients should not receive certain vaccines during Acthar treatment. Talk to your healthcare provider about which vaccines are safe for you. 6. Undetectable conditions. Acthar may hide or mask symptoms of other conditions or diseases making it more difficult for your healthcare provider to diagnose other conditions or diseases in you during treatment. 7. Stomach bleeding or ulcers. You may have an increased risk for bleeding from the stomach or having a stomach ulcer. Report any pain in the stomach area vomiting or bloody vomit bloody or black stools excessive tiredness increased thirst difficulty breathing or increased heart rate. 8. Changes in mood or behavior. Irritability depression or trouble sleeping may occur. What is H.P. Acthar Gel Acthar is a prescription medication used to treat acute relapses or flares in adults with multiple sclerosis MS. Studies have shown H.P. Acthar Gel to be effective in speeding recovery from an MS relapse. However there is no evidence that Acthar affects the ultimate outcome or natural history of the disease. What should I tell my healthcare provider before using H.P. Acthar Gel Tell your doctor about all of your health conditions including if you have A skin condition called scleroderma Bone density loss osteoporosis Infection throughout your body Eye problems such as ocular herpes simplex Recently undergone surgery History of or a current stomach ulcer Heart problems High blood pressure Allergies to pigderived proteins Diabetes Kidney problems Thyroid problems Liver problems Neuromuscular problems Convulsions or seizures Had exposure to someone with tuberculosis TB Recently been vaccinated Tell your doctor if you are pregnant or plan on becoming pregnant. Tell your healthcare provider about these and any other health problems you may have or medicines you are taking including prescription and nonprescription medicines vitamins and herbal supplements. How is H.P. Acthar Gel given Acthar should never be given intravenously into a vein. Acthar is given as an injection into the muscle or under the skin. Do not inject it into a vein or give it by mouth. Inject Acthar exactly as your doctor tells you. Your doctor will tell you where to give the injection how much to give how often and when to give yourself the injection. Refer to the full Prescribing Information for additional information on how Acthar is given. What are the possible side effects of H.P. Acthar Gel See What is the most important information I should know about H.P. Acthar Gel Acthar can cause side effects similar to those that can happen with steroid treatments. Tell your healthcare provider right away if you have any of the symptoms listed below while taking Acthar. Not all of the following side effects have occurred with Acthar but they might be expected. Before beginning any treatment you should discuss with your healthcare provider the potential benefits and risks associated with Acthar. Acthar can cause serious side effects. Acthar may make certain other medical conditions worse such as diabetes may increase blood sugar cause eye problems such as cataracts increased pressure in the eye glaucoma and possible damage to the optic nerve and cause allergic reactions to Acthar seen as skin rash swelling of the face tongue lips or throat and trouble breathing. Acthar may affect growth and physical development after long-term use. Long-term use of Acthar may cause an increase in the size of the heart but this condition usually goes away after Acthar is stopped. Tell your doctor if you have any of the side effects listed above. What are the most common side effects of H.P. Acthar Gel The most common side effects of Acthar in infants include infections increased blood pressure irritability and changes in behavior changes in appetite and weight diarrhea and vomiting. Other adverse reactions reported in adults and children over 2 years of age included abdominal bloating anxiety asthma chest discomfort congestive heart failure dizziness shortness of breath redness of the face fluid retention flushing headache injection site pain tiredness muscle weakness nervousness rapid heart rate and lack of energy. Report side effects to your healthcare provider. The side effects listed here are not all of the side effects possible with Acthar. Ask your healthcare provider for more information. Tell your healthcare provider if there is any side effect that bothers you or that does not go away. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.govmedwatch or call 1-800FDA1088. How should I store H.P. Acthar Gel Store vials of H.P. Acthar Gel in the refrigerator between 36F to 46F 2C to 8C. Throw away any vials after the expiration date printed on the label. What are the ingredients in H.P. Acthar Gel Active ingredient Corticotropin. Inactive ingredients gelatin phenol cysteine sodium hydroxide andor acetic acid to adjust pH and water for injection. General information about H.P. Acthar Gel. Medicines are sometimes prescribed for purposes other than those listed in the Prescribing Information. Do not use H.P. Acthar Gel for a condition for which it has not been prescribed. Do not give H.P. Acthar Gel to other people even if they have the same symptoms. It may harm them. Please see the full list of warnings precautions and adverse events in the full Prescribing Information for Acthar. Discuss this information with your healthcare provider. Find out more. Ask your healthcare provider or pharmacist go to www.acthar.com or call 18007787898 to learn more about Acthar. H.P. Acthar Gel and Questcor are registered trademarks of Questcor Pharmaceuticals Inc. a Mallinckrodt company. 2015 Mallinckrodt. PM-01-01-1483 1214 Printed in USA MSFocus Winter 201649 The ever-changing landscape of federal regulations medical technology and insurance coverage can make ones head spin. This column spotlights government resources available to qualifying people who have multiple sclerosis and other chronic illnesses. The AHRQ Website The Agency for Healthcare Research and Qualitys website offers research updates and information to educate and assist with the management of diseases like multiple sclerosis and other conditions. The AHRQs mission is to produce evidence to make healthcare safer higher qualityas well as more accessibleequitable and affordable. The AHRQ was originally created as the Agency for Healthcare Policy and Research in 1989. Its purpose is to improve patient safety and reduce the incidence of events that adversely affect patients. It encourages development of Patient Safety Organizations new organizations that can work with clinicians and healthcare organizations to identify analyze and reduce the risks and hazards associated with patient care. The AHRQ administers the provisions dealing with PSOs. AHRQ has also created the Health Care Innovations Exchange to speed the implementation of new and better ways of delivering healthcare. It offers health professionals and researchers opportunities to share learn about and adopt evidence- based innovations and tools suitable for a range of healthcare settings and populations. The AHRQ website includes links to healthcare information research tools and data information about funding and grants and news and events. On the site you can sign up for emails such as the Research Activities newsletter which includes announcements of agency products and projects and summarizes research findings from studies supported by the AHRQ. The AHRQ Web MM is a free peer-reviewed online journal and forum on patient safety and healthcare quality that features expert analysis of medical errors that readers report anonymously. The website offers topics on resources for clinicianspatient treatment summaries and podcasts in all areas of chronic and terminal illness. It is designed to assist patients consumers and healthcare professionals in care planning patient involvement and the latest evidence-based information for improving ones life. Patients and families who engage with healthcare providers are inclined to ask good questions that help reduce the risk of errors and minimize hospital admissions. This website is a tool to help someone get more involved with their healthcare by learning what questions to ask how to talk to their clinician and how to better understand their condition. Preventing disease and helping patients maximize health and function during their life are two essential activities of a well- functioning healthcare system. AHRQs PreventionCare Management Portfolio works to improve the delivery of primary care services in order to meet the needs of the American population for high quality safe effective and efficient clinical prevention and chronic disease care. Visit the AHRQ website at www.ahrq.gov. MSFocus Winter 2016 50 Review by Christopher C. Paine As anyone who has multiple sclerosis knows the disease has a way of altering the plans one had for ones life and seeping into every aspect. For journalist Marilyn Murray Willison it fundamentally changed some very important aspects of her life and career. Marilyn was diagnosed with MS at the age of 35 and has used a wheelchair for the past 24 years. Her career as a journalist began in Los Angeles took her to London and eventually brought her to West Palm Beach Fla. Her writing career encompasses five books her new self-published memoir shows in ways great and small how MS changed very specific wishes she had for her life. Those wishes inspired by the work of French psychotherapist mile Cou were formulated early on as a personal mantra I am healthy beautiful loved and enlightened happy famous rich and thin. Each of these individual wishes is the focus of one of the eight chapters that make up the bulk of the book. The prose itself is very readable and shows how the disease of MS can make one reframe the most important aspects of ones life. Much of it illuminates the life of a woman who enjoyed a lifestyle that brought her into contact with the rich and famous but it also highlights the struggle of being a single mother and the extent to which her disease changed everything. The book reads like a series of short nonfiction stories each possessing its own narrative arc and resting on an individual theme spanning decades. Each sums up its lessons at the end. The themes that unite the disparate chapters are how large her adoptive parents and her MS loom over the story and how Willison learns something about herself and what is important either because of or in spite of her disease. This is a very readable and relatable memoir of a woman who has seen and experienced much and made peace or at least a truce with the changes that MS has made to her otherwise rich and full life. One Woman Four Decades Eight Wishes A Journalists Memoir of Challenge Change and Growth by Marilyn Murray Willison 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. One Woman Four Decades Eight Wishes by Marilyn Murray Willison 217pp. 20.00 Listen to the radio interview on demand at httpssoundcloud.comms-focus MITOQ.COM YOUR CELLS POWER YOUR BODY. MITOQ POWERS YOUR CELLS. FRASER H. SCOTLAND Sufferer requiring functional electrical stimulation FES for a dropped foot I dont want to raise false hopes but I can bite my tongue no longer. Ive been on MitoQ now for nearly 12 weeks. Ive gone from someone requiring assistance to dress cook and do laundry. Now I am at a point of dressing myself cooking and doing my own laundry. My walking has improved greatly. Indeed Ive just completed a three day weekend with no assisted care at all. This morning my carer pushed the vacuum cleaner about. Thats it. My mind is awash with the possibilities. The daily cost is equivalent to half a cup of decent coffee. At that price I cant afford not to take it. Im looking forward to a future I could never have dreamt of before. To hear Frasers full story go to mitoq.comyour-stories A link between mitochondrial dysfunction and neurological function has been established. Experts have suggested that symptoms of fatigue or reduced energy could be related to mitochondrial dysfunction. Mitochondria become damaged with age and environmental factors and in some cases more than others. Free radicals damage molecular structure and whole body systems such as our immune system are affected. Scientists today target mitochondria as a promising new avenue for neurological support and energy. MitoQ is a revolutionary mitochondrial-targeted supplement that contains Coenzyme Q a potent antioxidant. MitoQ penetrates mitochondria up to 847 times more effectively than CoQ10 supplements because it has a positive charge. This means it is drawn into the negatively charged mitochondria unlike regular CoQ10. MitoQ reduces oxidative damage to help support neurological function and energy along with healthy ageing. These statements have not been evaluated by the Food Drug Administration. This product is not intended to diagnose treat cure or prevent any disease. Sold and distributed by MitoQ Ltd Auckland New Zealand. MITOQ.COM I now have the energy to lift my legs rather than drag them through. w haI no e the enervw ha e the energye the ener OMCOQ.MIT than dr o lift mt eeks.or nearly 12 ww fno aise fo rant tI dont w equiring functional electrical ser rerSuff TLANDOSER H. SCFRA ag them thrthan dr y legs ro lift m eeks. y te malse hopes but I can bitaise faise false hopes but I can bit tion FES ftimulaequiring functional electrical s TLAND oughag them thr theray legs r e been on Mit. Ivongue no longerongue no longer. Ivy t ootopped for a drtion FES f .ough ther gy oQe been on Mit s full sasero hear FrTTo hear Fr oreamt of befe drvha et prict tha. Aeeoffc ash with the poswMy mind is a er pushed the vy carm omplett ce jusIndeed Iv ysing mespoint of dr om someone re gone frIv eeks.or nearly 12 ww fno oriestour-syomomycoq.o mit go toryts full s .eor e it. Im looking fo takd not tor I cant aff oshe daily csibilities. Tash with the pos s it.thaacuum cleaner about. 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Mitent antio ochondrial-tarolutionary mitveoQ is a r omising neochondria as a prget mit ed.ecte affem artsysuch as our immune s adicals damage molecular see re than others. Fr virome damaged with age and en sfunction. tigue or raoms of fymptt sed thate sugges sfunction and neurochondrial dy xidaes oeducoQ r. MitoQ10egular C his means it is dr. Tgee charbecause it has a positiv 7 times moro 84ochondria up tes mitt ontainst ced supplement thagetochondrial-tar ological supportor neurenue fvw aomising ne tsy and whole body setructuradicals damage molecular s ors and in some casesactonmental fvir elaould be rgy ced enereductigue or r tablished.ological function has been essfunction and neur etivxida wnahis means it is dr e7 times mor ontains ological support emst ors and in some cases edtela tablished. OMCOQ.MIT ent anvee or prt curea tro diagnoset e not been evements hattahese sT o help support neurdamage t ely charo the nega OUR CELLS POY OM d AtoQ Ly Mited btribut. Sold and disy diseaseent an his prtion. Tatrdminisood Drug Ay the Fed btaluave not been e ological function and enero help support neur ochondria unlikged OUR BODWER YOUR CELLS PO ealand.w Zuckland Ned A endedoduct is not inthis pr y ageing. along with healthgyological function and ener egular C .YOUR BOD y ageing. OQ POMIT OUR CELLS POY OUR CELLS.WERS YOQ PO OUR BODWER YOUR CELLS PO OUR CELLS. .YOUR BOD MSFocus Winter 2016 MEEMEE IITTSS AALLLL AABB OOUUTT Motivating Educating Empowering MULTIP LE SCLEROSIS FOUN DATION MEEMEE IITTSS AALLLL AABB OOUUTT Motivating Educating Empowering MULTIP LE SCLEROSIS FOUN DATION Our educational programs presented through the fall highlighted the latest news and research to help you live well with MS. Here are some of our most recent stops Nov. 7 Twinsburg Ohio African Americans with MS The Medical Cultural and Psychological Differences Mitzi Williams M.D. a neurologist from the Multiple Sclerosis Center of Atlanta spoke to the MS community in Twinsburg near Cleveland Ohio. This luncheon event was held at the Hilton Garden Inn in Twinsburg. Support for this program was provided through educational grants from Sanofi Genzyme. Nov. 14 Towson Md. African Americans with MS The Medical Cultural and Psychological Differences Lara Stepleman Ph.D. director of the Psychological Services Department at the Augusta MS Center joined Mitzi Williams M.D. for a luncheon program at the Towson University Marriott Conference Hotel in Towson Md. Educational grants from Biogen and Sanofi Genzyme made this program possible. Nov. 19 Atlanta Are you tired of being tired MS Fatigue and Dec. 16 Atlanta Who wants to be a Myelinaire Ben Thrower M.D. medical director of the Andrew C. Carlos MS Institute at the Shepherd Center in Atlanta presented the program. The program was supported through educational grants from Mallinckrodt Pharmaceuticals Teva Pharmaceuticals Biogen and the generosity of the Shepherd Center. Dec. 17 Tampa Fla. MS and Your Immune System Jeffrey Rumbaugh M.D. Ph.D. Neurologist and Neuroimmunologist at Watson Clinic in Lakeland Fla. presented the program. The dinner program was held at the Spaghetti Warehouse in Tampa Fla. with promotional support from Teva Pharmaceuticals. To find out if the MSF will be visiting your local community stay connected through our Facebook page at www.facebook.comMultipleSclerosisFoundation. 52 By Hildy Berger Mad Hatter Luncheon and Fashion Show On Nov.6the MSF hosted a Mad Hatter Fashion Show and Luncheon featuring Bloomingdales Best of Fall 2015 Designer Collections. Along with beautiful models strutting down the runway wearing the seasons hottest trends honoree Patrick Daoud of Daouds Fine Jewelry was recognized for his philanthropic dedication to the mission of the Multiple Sclerosis Foundation. This memorable event which took place at the luxurious Hyatt Regency Pier Sixty-Six resort in Fort Lauderdale Fla. featured a Mad Hatter Cake designed by AllStarCupcakes.com and a Kendra Scott mystery jewelry pull. Wonderful raffle prizes included a gorgeous designer handbag which also came with a Girls Day Out for the winner and nine friends at The Colonnade Outlets complete with limo transportation and lunch at P.F. Changs. Guests enjoyed many of the creative hats from FeatherHeart Designs by Dannielle Kukar and music by Symphony of the Americas Broward Countys own professional orchestra. Many other supporters such as CBIZ MDW Insurance Group TEVA Pharmaceuticals Novartis Coral Ridge Yacht Club Toshiba Hyatt Pier Sixty-Six Pravda Vodka and Events by Vento Designs helped to make this event possible. Thank you to our Special Events fundraising volunteers. Ingress First Saturday IngressFS is a virtual capture the flag game utilizing GPS-dependent clues created by Niantic Labs a startup within Google. The game which has a complex science fiction backstory and continuous open narrative is enjoyed by large groups of technologically savvy players using Android and Apple devices. A big thank you goes out to local area organizer Rachel Wellman and agents Jillian Rigsby and Kelly Fallon who led five monthly First Saturday of the month games in various South Florida locations beginning in May holding raffles afterwards to raise funds for the MSF. To date more than 1000 was donated with more events to benefit the Foundation likely in 2016. 53 MSFocus Winter 2016 54MSFocus Winter 2016 Midland School Fun Run Challenge Midland School No. 1s third annual Fun Run on Sept. 25 in Rochelle Park N.J. had more than 100 students participate to raise money for the MSF. The event was a rousing success with the students having a great time in a physical fitness setting while learning about MS and raising more than 500 to help those in need. Special thanks to Debbie Leakas Jennifer OBrien and all the Midland School No. 1 students staff and volunteers who made this great day possible. 24 Hour Time Trial Championship Ride for the MSF MSF fundraiser and endurance bicyclist Luke Kocher participated in last Novembers 24 Hour Time Trial World Championship qualifiers for this years Race Across America competition. That course is 3000 miles across the U.S. from Oceanside Calif. to Annapolis Md. and attracts participants from 35 countries. Despite successfully qualifying for the RAAM event Luke has chosen a different path namely the 2016 Trans Am Bike Race beginning June 4 2016. Trans Am is the longest self-supported bicycle road race in the U.S. covering 4400 miles and traversing ten states from Yorktown Va. to Astoria Ore. Luke is determined to conquer the Trans Am challenge while advocating for the MS cause and he fundraised more than 500 in donations for the Foundation from supporters of the RAAM trial in 2015. In addition he and friend and cycling partner Steven Stern plan on actively fundraising for the MSF as part of their future Pedaling With Purpose cycling ventures. And Lukes final qualifying stats Well he logged over 338 miles in 24 hours placing second in his age group Congratulations Luke we look forward to cheering you on in the months to come. Muddin Around With Craig Evans Labor Day weekend was a special weekend for the Mud Truck Racing crowd in Virginia. The Foundation partnered with Craig Evans who decorated his truck with orange ribbons and passed out MSF pens and wrist bands to help raise awareness. In October he raced again 55 MSFocus Winter 2016 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. winning second place in his division Craigs success in these events has inspired donations from spectators and fellow racers. Along with his winning payout which he generously donated in full to the MSF proceeds from his racing and outreach in 2015 have totaled 840. Congratulations and thank you Craig Many thanks to loyal MSF supporter Dee Beatty Arise Walk with Hope Walkathon and the congregation of Mt. Pleasant Missionary Baptist Church in Clinton N.C. for their generous donation which will help to lift the spirits of many of our MS friends this holiday season and beyond. And much appreciation to Chad Dargy of the Cove Lounge and Grille of Omaha Neb. and everyone who participated in and supported their 2015 Annual Cove Charity Classic Golf Tournament to benefit the MSF which brought in more than 2200 in proceeds and direct donations. 56MSFocus Winter 2016 If you are not at home but find yourself needing or wanting to use your mobile device rest assured it is very easy and can be very useful. The first consideration is whether or not you need to be connected to the Internet. It is necessary to have a Wi-Fi or cellular-enabled device to connect. All smart phones have cellular and Wi-Fi capabilities. Whether you can take advantage of these capabilities especially while traveling depends upon your carrier and plan. You can also purchase other devices such as a tablet with cellular capabilities. Your device must have a cellular antenna built in when the device is purchased and will be more expensive than a non- cellular device. It also requires service from a provider. You cant add this function after purchase.HoweverWi-Fi-only devices can get Internet service via a cell tower by sharing the cellular connection with a phone. Be aware that you are still using data from your cellular plan. Check with your provider to learn how to use this feature. Almost all mobile devices can connect to the Internet via Wi-Fi. In order to use Wi-Fi while away from home you need to be in range of Wi-Fi service that is generally provided by a third party. These sites are often called hotspots. Many places allow you to connect without any security but for some connections you need a password. Check at each location to learn how to connect. Be cautious though. This service while often provided free or at a nominal fee is often not very secure. Think carefully before entering or sending personal information while using such a service. It is possible for unsecured connections to be hacked and your information used by others in a way that is nefarious. There are many useful apps that can help with travel such as those for planning navigating or booking flights hotels and attractions. Some require an Internet connection but many do not need online access while using them. They are available from iTunes or the Google Play Store. Many magazine and travel guide websites provide a compre- hensive list of useful travel apps. An Internet search of best travel apps 2015 will yield excellent results. The camera is one of the most popular apps especially while traveling that On the Road with Technology By Joanne Fortunato 57 MSFocus Winter 2016 does not require an Internet connection. It is worth noting that if you use the camera while connected to the Internet the date time and location will be embedded in the photograph if this feature is not turned off. It is usually turned off in settings under location services. If connected while using the camera you should be aware this information will be included when you post or send the picture via text or email. This is known as geotagging. Games are probably the most used apps that do not require an Internet connection. Games range from word puzzles to arcade types. Games are very useful when you need to pass time in an airport on a plane or in a car. Many free games only provide limited functions and you need to pay for additional features. They are often called lite versions. There are several apps that can be used without an Internet connection if you preload the information on your device using an Internet connection before you travel. A good example of this is borrowing ebooks audio books and digital magazines from your public library. The lending policy for digital material is usually very similar to the nondigital policies. Digital material can be downloaded wherever you have a Wi-Fi connection available. You can also down- load maps and use the built-in GPS without an Internet connection. Communicating with family and friends while traveling is convenient and simple with a cellular device though this becomes a little more challenging and expensive if youre traveling outside the U.S. If you are using an Apple device and have a Wi-Fi connection texting or using FaceTime with someone who is also using an Apple device is free. Skype can also be used to communicate in a similar fashion on an Apple andor Android device. In order to send or receive communication all parties need a free Skype account. Check the Skype website for more information. Whether you are on a plane in an airport or in a train station almost everyone is using a mobile device. Mobile devices make traveling easier and more fun. Internet connections are readily available in many locations worldwide. Keep in mind when using a mobile device even at home you need to always be conscious of security and privacy issues. Joanne Fortunato BS MA is a retired computer technology teacher in Troy N.Y. She has a masters degree in education and has been teaching technology to teachers and students for 30 years. She has published several articles and books on educational computer technology including several articles with the International Society for Technology in Education ISTE. She was diagnosed with MS in 2006 and uses technology to aid in coping with the many difficulties that MS can present. She is excited to share this information with others that deal with the same and many other issues on a daily basis. Contact Joanne at msfocustech101gmail.com. MSFocus Winter 2016 Pushing Back to Help Others By Anson Kowanjko At 25 years old I was running my own start-up business. I was a hard worker but also partied hard. I was putting in about 70 work hours a week drinking heavily in my spare time and pretty much living on junk food. I weighed more than 100kg about 220 pounds and was generally unfit and unhealthy. My symptoms started in early 2004 with stabbing pins-and-needles-type headaches and a constant ache behind my right eye. I had slightly blurred vision in my right eye but never really took too much notice of it. I guess with such long hours and late nights I assumed it was due to tiredness. This went on for several months. I didnt confide in anyone at the time as I just hoped one day it would all stop. Then one day I remember walking along the street and suddenly the sharp stabbing pain behind my right eye was unbearable.That was the first time I acknowledged some- thing could be seriously wrong That evening I visited a doctor who examined my right eye and observed significant lack of pupil dilation. He immediately referred me to Auckland hospital. I remember the exact words he scribbled on the specialist referral note Optic Neuritis MRI I had an appointment the next day but couldnt wait that long for answers. I went home and immediately googled the words he had written. All signs pointed to multiple sclerosis. As you can imagine I barely slept a wink that night. I was extremely anxious throughout my hospital appointment. Doctors ran various tests. A specialist noted the optic nerve was very inflamed. Is it multiple sclerosis I asked. The doctor appeared very calm as he repliedIt may be but whatever the case we have to get the swelling of the nerves down immediately to avoid potential blindness. I was immediately put on methylprednisilone for a week to help try to bring the swelling down. Within three days I was sent in for an MRI. I remember lying inside the machine and looking through a small window on the side. I could see several doctors standing around looking quite sad. One was frowning and shaking his head. I knew at that moment it was confirmed I had multiple sclerosis. My family was devastated and every- one else felt sorry for me. At just 25 I battled depression and thoughts of being wheelchair-bound within months. I felt like my whole life as I knew it was gone. I felt lost lonely and held little hope for my future. I immediately shut down my business. I just didnt feel I could cope with the 58 59 MSFocus Winter 2016 demands of it any longer. As much as I was struggling both physically and emotionally I knew I still had to work to pay the bills. So after about three months I took up a role at a finance company. It was predominantly phone-based which suited me as I didnt feel like dealing face-to-face with people at the time. While still trying to mentally come to terms with my diagnosis my physical symptoms started to increase by the day. Lethargy kicked in. I gradually lost my ability to walk straight as I was losing general feelings in my arms and legs. My arms started curling up to the point I could no longer write with my right hand. I had to train myself to become left- handed for many day-to-day activities. It was a constant mind and body battle throughout the first 12 months after my diagnosis. Then one day I decided that enough was enough. I was no longer going to just sit back and let this disease take over my life. I needed to gain back control in any way I could. I started with my diet. I vowed to give up the junk food and instead stocked up on healthy fruits vegetables and lean meats. I also bought a treadmill setting a goal to regain control of my limbs. In the beginning I held onto the side rails focusing on one step at a time to retrain my legs and urge myself to walk steadily again. I took it one day at a time.With each day of improvement I felt great satisfaction and setting goals gave me real purpose again. After several months I could let go of the rails. Then I started to walk faster and eventually could even run Each day I worked hard. After about 12 months I lost 40 kg 88 lbs. and had a whole new lease on life. I was walking steadily the tingling and numbness had stopped my arms were no longer curling. I was physically and mentally functioning again.I was back to the person I was before the diagnosis. And from there I vowed to never look back Sure it hasnt always been smooth sailing. MS can attack different parts of your body at any time.At one stage due to muscle wastage I got down to just 62 kg 137 lbs. and looked drawn and weak. But I maintained my positive outlook and pushed myself to regain my strength. Eventually I got back up to 80 kg 176 lbs. and looked and felt fitter stronger and healthier than ever. Bouncing back from the worst of my symptoms I was determined to work my way up the corporate ladder. My health was good work was going well I was socializing again. Life was once again enjoyable. After 10 years working at the same company I decided I needed a change. I left my job and sat back and had a good think about my life and where I wanted to go from there. MS was such a huge part of my life now. I decided that I wanted to make it my life mission to assist in finding a cure for multiple sclerosis and support the MS community in any way I can. I am passionate driven and determined to fight against MS.I want to join the many people around the world who dedicate their time and efforts to raising funds and awareness towards the cure prevention and treatment of MS. Together I believe we can join forces find answers and one day beat it. Anson Kowanjko worked with Multiple Sclerosis Auckland to launch Bid For A Better Life is a global fundraising platform designed to raise funds to assist in the research support and treatment. The goal of this initiative is to build a treatment and research facility in Auckland and to fund independent research grants and global research projects with the aim of finding a cure for MS. 60MSFocus Winter 2016 The majority of patients with multiple sclerosis are originally diagnosed with either relapsing-remitting multiple sclerosis or primary-progressive multiple sclerosis. These two types of the disease are very different in both clinical course and available treatment options. Eighty- five percent of patients are originally diagnosed with RRMS characterized by a pattern of attacks followed by remissions. All of the currently available disease-modifying treatments are effective in RRMS. Ten percent of patients are originally diagnosed with primary progressive multiple sclerosis characterized by constant disease progression from the very beginning and a slow but nearly continuous worsening of disease with no distinct relapses or remissions. To date there are no approved treat- ments for PPMS in fact until now no clinical studies have shown positive effects for patients with PPMS. According to Dr. Ben Thrower M.D. director of the Multiple Sclerosis Institute at the Shepherd Center One of the greatest unmet needs in the treatment of multiple sclerosis is an effective treatment for patients with primary-progressive disease. There is finally hope on the horizon for patients diagnosed with PPMS results from the ORATORIO study found that treatment with ocrelizumab decreased disability in patients with PPMS. About ORATORIO Study The Phase III randomized double- blind multicenter global ORATORIO study evaluated the efficacy and safety of ocrelizumab in patients with PPMS. The drug was administered as a 600mg intravenous infusion every six months given as two 300mg infusions two weeks apart. A total 732 patients mean age 44.6 years participated in the study. The primary efficacy endpoint of the study was the time to onset of confirmed disability progression. It was defined as an increase in the Expanded Disability Status Scale score that was sustained for at least 12 weeks. Other endpoints included changes in the timed walk assessment volume of MS lesions observed on MRI scans and safety and tolerability. The efficacy results with ocrelizumab were generally positive. Compared with placebo treatment with ocrelizumab significantly reduced 12-week confirmed disability progression by 24 percent. Treatment with ocrelizumab also FinallyFinally Hope on the HorizonHope on the Horizon for Patients With Primaryfor Patients With Primary Progressive Multiple SclerosisProgressive Multiple Sclerosis By Ellen Whipple BS Pharm.D. MSF Medical Advisor 61 MSFocus Winter 2016 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. significantly decreased 24-week disability progression and whole-brain volume loss. Patients who received ocrelizumab also had significantly less worsening on the Timed 25-Foot Walk test over 120 weeks. Although new lesion formation occurs less frequently with PPMS compared with RRMS the investigators also saw significant improvement in the volume of hyperintense T2 lesions with a reduction of 3.4 percent with ocrelizumab and an increase of 7.4 percent placebo at 120 weeks. The occurrence of adverse events was similar in both groups. The most common adverse events were mild-to-moderate infusion-related reactions. Generally infusion-related adverse events were worse with the first dose and decreased with time. The occurrence of serious adverse events e.g. serious infections was similar between groups 20.4 percent and 22.2 percent there were no reports of progressive multifocal leukoencephalopathy commonly called PML. Malignancies and deaths were numerically more common with ocrelizumab compared to placebo. Dr. Thrower said these events i.e. malignancies and deaths will need to be researched further. Clinicians will need to better understand these risks so that they can help their patients make informed treatment decisions. About Ocrelizumab and the Phase III Clinical Development Program Ocrelizumab is an investigational humanized monoclonal antibody. It was designed to selectively target CD20- positive B cells which are thought to be key contributors to myelin nerve cell insulation and support and axonal nerve cell damage. Preclinical data suggests that ocrelizumab binds to CD20 cell surface proteins expressed on certain B cells but not on stem cells or plasma cells therefore important functions of the immune system may be preserved. Ocrelizumab is also being studied in patients with RRMS. The Phase III clinical development program for ocrelizumab includes the Phase III randomized double-blind double- dummy global multi-center OPERA I and OPERA II clinical trials. Results in these trials have also been positive. Genentech a division of Roche Pharmaceuticals the manufacturer of ocrelizumab is expected to submit data to the Food and Drug Administration this year. It is expected that Genetech will pursue marketing authorization for ocrelizumab for both RRMS and PPMS. Stay tuned for more information on these promising developments 62MSFocus Winter 2016 Lack of Confidence May Hurt MS Patients A new study suggests confidence may be key to well-being for multiple sclerosis patients. A lack of confidence resulting from impairments interacting with environmental factors may impede people with MS from taking steps to prevent secondary symptoms like depression deconditioning from lack of exercise and poor nutrition or eating choices that may result in obesity or diabetes. Researchers led by Matthew Plow of Case Western Reserve Universitys Frances Payne Bolton School of Nursing wanted to identify factors that rehabilitation professionals might target to increase overall engagement in community activities and promote other healthy behaviors like exercise and eating right. The authors asked 335 people with MS to rank the importance of 20 activities. Participants ranked the following as most important to them Getting out and about spending time with family and friends managing bills and expenses and participating in clubs and civic and political events. Three barriers surfaced lack of confidence physical and mental impairments and environmental factors. Plow and his team discovered that struggling with impairments like MS fatigue and cognitive and walking problems interact with environmental factors like inadequate social support and transportation issues to impede a persons confidence to manage his or her MS symptoms in order to engage in healthy behaviors and meaningful activities like spending time with family and friends. The findings were reported in the Journal of Rehabilitation Medicine. Dr.Thrower MS is a complex disorder that has the potential to affect a persons quality of life. Managing MS is much more than just finding a drug to alter the long- term course.The comprehensive treatment of MS means taking into account all of the factors that affect the persons quality of life. In my experience social isolation and a withdrawal from social activities can negatively affect a person just as severely as any other MS issue. Some people get caught up in a cycle of worsening mood andor physical impairments limited mobility fear of falling and transportation challenges all leading to social isolation. The authors of this research rightly point out how all of these factors come together to potentially affect a persons confidence or lack thereof. At our center we take advantage of our case managers our wellness program friends and family of The MS News column includes analysis from MSF Senior Medical Advisor Ben Thrower M.D. Drawing from the top MS news stories of the quarter Dr. Thrower assesses what the news means to you the person with MS. MS NEWS and What It Means to You 63 MSFocus Winter 2016 the person with MS community resources nonprofit groups churches and other places of worship to help avoid social isolation and help build the persons self-confidence. Novartis Adds PML Warning to Gilenya Label Novartis has updated the Gilenya fingolimod prescribing information to include a new warning of progressive multifocal leukoencephalopathy. The change to the Warnings and Precautions section is based on two cases of PML previously shared with the MS commu- nity and reported to health authorities earlier this year. The U.S. Food and Drug Administration also issued an advisory that a case of definite PML and a case of probable PML have been reported in patients taking Gilenya for multiple sclerosis. Patients taking Gilenya should contact their healthcare professionals right away if they have any new or worsening medical problems that have lasted several days including problems with thinking eyesight strength balance weakness on one side of their body or increased trouble using their arms and legs. Patients should not stop taking Gilenya without first discussing it with their healthcare professionals. Healthcare professionals should withhold Gilenya and perform tests if PML is suspected. PML is a rare and serious brain infection caused by the John Cunningham virus. The JC virus is a common virus that is harmless in most people but can cause PML in some patients who have weakened immune systems including those taking immunosuppressant drugs. Should healthcare providers or patients have questions they may contact Novartis directly at 888-669-6682. Healthcare professionals and patients are encouraged to report adverse events or side effects related to the use of Gilenya to the FDAs MedWatch Safety Information and Adverse Event Reporting Program. Complete and submit the report online www.fda.govMedWatchreport download form or call 800-332-1088 to request a reporting form then complete and return to the address on the preaddressed form or submit by fax to 800-332-0178. Dr. Thrower As more treatment options become available for MS we must balance the potential benefits with the potential risk. Both Gilenya and Tecfidera have now been associated with rare cases of PML. Gilenya is an effective oral therapy and while these cases of PML are obviously of concern it should be emphasized that people worldwide are on Tysabri. We do have blood testing available for antibodies to JC virus. This testing has definitely helped minimize the risk of PML in patients onTysabri and could be considered for people on Gilenya andTecfidera as well. JC Virus Vaccine Several MS therapies have been associated with some risk of PML a brain infection caused by JC virus. What if we could effectively treat PML by using antibodies to the JC virus Better still what if we could prevent PML in the first place with a vaccine to the JC virus This could open up the use of drugs like Tysabri for people who may have been considered too high risk in the past. In my experience Tysabri has been one of the most effective therapies available for relapsing forms of MS and would certainly be more widely used if we could take away or drastically reduce any risk of PML.Two recent studies give hope that we may be able to treat patients with PML or potentially prevent PML with a vaccine.As reported in Science 64MSFocus Winter 2016 Translational Medicine one study was able to show how the JC virus potentially hides from the human immune system in patients with PML. Perhaps more exciting is the second study showing how a vaccine might be developed using antibodies from an individual who recovered from PML. Exercise May Slow MS Progression in Kids A new study finds that children with multiple sclerosis engaging in higher levels of strenuous physical activity had lower T2 lesion amounts and lower relapse rates. The results suggest a potential protective effect of strenuous physical activity for young patients with MS. Researchers gave 31 children with MS and 79 who had experienced a single inflammatory neurologic event question- naires about tiredness depression and how often they exercised. Of those 60 were also given MRI brain scans to measure brain volume and the amount and type of MS lesions they had. Only 45 percent of the children with MS reported participating in any strenuous physical activity. The children with MS who took part in strenuous physical activity were more likely to have a lower overall amount of lesions in the brain that indicate disease activity or T2 lesions than the children with MS who did not do strenuous activity. Those with strenuous activity had a median of 0.5 relapses per year compared to 1 per year for those with no strenuous activity. Up to three-quarters of children with MS experience depression tiredness or memory and thinking impairment study author E. Ann Yeh with the University of Toronto in Toronto Ontario Canada said. Our research is important since little is known regarding how lifestyle behaviors may affect the disease. The findings were published in the online issue of Neurology. Dr. Thrower Weve come a long way since the time when people with MS were actually told not to exercise.We now know that exercise has numerous benefits for the person with MS. In the big scheme of things its important to remember that most people with MS die of heart disease cancer or stroke. The benefits of exercise in helping prevent these three conditions are well known. Studies have shown that exercise has specific benefits for MS such as better energy levels better endurance and improved mood.This study in children with MS would seem to suggest that exercise has benefits to the immune system as well. People with MS may face challenges regarding finding and sticking to a regular exercise program. It should be noted that there is no one best exercise for people with MS. The best exercise program for anyone is the one they have access to and will stick with. Study Poor Sleep Linked to Fatigue in MS A new study focusing on secondary fatigue and the role of sleep disturbance in multiple sclerosis reports that sleep disturbance accounted for 25 percent of the likelihood in predicting fatigue followed by depression which accounted for an additional 7 percent. The research conducted by Lauren Strober of the Kessler Foundation employed 107 individuals with MSof whom 61 percent reported poor sleep. The study confirmed that sleep disturbances significantly contribute to MS-related fatigue a common and often disabling symptom among individuals with MS. 65 MSFocus Winter 2016 Fatigue is detrimental to daily functioning and well-being Dr. Strober said. It clearly interferes with a persons ability to participate fully in the community and the workplace. If we can determine what contributes to fatigue in MS we can improve quality of life and keep people engaged in work and social activities. Routine screening for sleep problems and treatment of sleep disturbances may reduce fatigue and its debilitating effects. Dr. Thrower Well the findings of this study seem pretty obvious. Fatigue is one of the most common symptoms for people with MS and many list it as their most bothersome symptom. I like to think of fatigue in MS as an octopus with each of the eight legs representing a different possible component of fatigue. Some people have fatigue driven by only one or two of the octopus arms while others have contributions from all eight arms. Those arms are 1 Lassitude This is a type of MS fatigue that is not due to heat or exertion and feels like being unplugged. 2 Nerve fiber fatigue This is fatigue or weakness associated with heat andor exertion. 3 Fatigue as a side effect of medications. 4 Fatigue due to poor sleep. This may be because of a sleep disorder such as sleep apnea or disrupted sleep because of spasms or bladder symptoms. 5 Fatigue associated with depression. 6 Fatigue associated with the need to compensate for disabilities. Some people use more energy to carry out their daily activities because of physical limitations imposed by their MS. 7 Fatigue associated with other medical conditions. 8 Fatigue associated with deconditioning and a lack of exercise. T-Shirts Sweatshirts Bears Cooling Items Jewelry Orange Ribbon Awareness Items Car Magnets and so much more. See our online catalog at www.themsshoppe.com 920 238-5138 infothemsshoppe.com A portion of all proceeds goes to the MSF 66MSFocus Winter 2016 Q.Q. Is multiple sclerosis hereditary A.A. While multiple sclerosis is not believed to be a hereditary disease having a family history of MS particularly in a parent or sibling does make a person more likely to develop it. In a family in which one parent has MS the risk that their children will develop the condition is estimated to be between 2 and 5 percent. Studies have shown that there is a higher prevalence of certain genes in areas where MS seems to clusteras well as in some families where there is more than one person with MS. It is speculated that MS develops because a person is born with a genetic tendency to react when exposed to some environmental agent that triggers an autoimmune response. Q.Q. Can environmental factors cause multiple sclerosis A.A. Epidemiologists scientists who study disease patterns have learned that multiple sclerosis occurs more frequently in geographic locations that are farther from the equator. In an effort to understand the puzzling disease patterns found in MS scientists continue to examine geographic demographic and genetic variables. For example studies have shown that people born in a geographic location with a high incidence of MS who move to a geographic location with a lower incidence of MS before the age of 15 will acquire the lesser risk associated with their new location. Such data suggest that exposure to some environmental factor or factors prior to puberty such as dietexposure to industrial toxins or content in water or soil may predispose a person to develop MS later in life. Some researchers believe vitamin D which the body produces naturally when the skin is exposed to sunlight may be involved. People who live closer to the equator are continually exposed to greater amounts of sunlight. As a result they tend to have higher levels of naturally- produced vitamin D which is thought to have a beneficial effect on immune function and may help protect against autoimmune diseases like MS. Q.Q. What are differences in MS in African Americans A.A. Studies have shown that African Americans have more involvement of the optic nerves and spinal cord than their Caucasian counterparts. There are also variations in disease course namely a more aggressive course of disease in African Americans with increased relapses and shorter time to ambulatory disability. 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. 67 MSFocus Winter 2016 Q.Q. Can chronic cerebrospinal venous insufficiency cause multiple sclerosis A.A. Two studies reported in the Annals of Neurology have cast doubt on the theory that a vascular condition known as chronic cerebrospinal venous insufficiency contributes to the development of multiple sclerosis. Dr. Florian Doepp and colleagues in Germany performed an extended extra- and trans-cranial color-coded sonography study on 56 people with MS and 20 control subjects. Results showed that blood flow direction was normal in all participants excluding one subject with relapsing-remitting MS. In summary the researchers determined that none of the study participants fulfilled more than one criterion for CCSVI. A second study by researchers at Umea University in Sweden also concluded that CCSVI does not contribute to the development of MS.The Swedish research team led by Peter Sundstrom M.D. Ph.D. tested the vital component of the CCSVI theory the obstructed internal jugular flow IJV in 21 people with MS and 20 healthy controls using MRI with phase contrast. The researchers found no significant differences between the MS group and control group relating to total IJV blood flow. Q.Q. Can multiple sclerosis cause brain inflammation A.A. Inflammation in the brain is a key contributor to multiple sclerosis severity. Once a diagnosis of MS is made medi- cations are often started to reduce that inflammation. MS is characterized by increases in many different inflammatory chemicals called cytokines. These inflammatory chemicals may disturb the bloodbrain barrierwhich normally limits inflammation from getting into the brain. Once this barrier is disturbedinflammatory chemicals can enter the brain with greater ease. The immune system in people with MS shifts towards a proinflammatory immune response. Certain inflammatory chemicals create this type of dysfunctional response. Questions can be also be emailed to supportmsfocus.org or mailed to MSFocus 6520 North Andrews Avenue Fort Lauderdale FL 33309. NONPROFIT ORG. U.S. POSTAGE PAID FT. LAUDERDALE FL PERMIT NO. 2698 Are you moving Please notify us of your change of address. 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