MS Connection Fall 2013
The National MS Society's Fall 2013 newsletter for the Greater Delaware Valley.
FALL 2013 DELAWARE, SOUTHEASTERN PENNSYLVANIA & SOUTH JERSEY MSCONNECTION NEWSLETTER 2013 ANNUAL MEETINGS FEATURING RAIN PRYOR: SHARING HER MEMORIES FOR THE FIGHT AGAINST MS As the daughter of legendary comedian Richard Pryor, award-winning performer Rain Pryor knows a lot about entertainment and, because of her father’s diagnosis in 1985 at the height of his career, she also knows a lot about MS. As a teen in a typically tumultuous relationship with her father, this news put things into perspective for young Pryor. CONTINUED ON PAGE 21 INSIDE 08 THIS ISSUE EXERCISE AND THE BRAIN 12 16 24 30 JOB ACCOMMODATION STRATEGIES KEY CONSIDERATIONS FOR CHOOSING A HEALTH PLAN DRIVING WITH MS FACE OF MS: SHRADDHA PATEL 02 MS CONNECTION: FALL 2013 GREATER DELAWARE VALLEY CHAPTER DELAWARE CHAPTER National Multiple Sclerosis Society 30 South 17th Street, Suite 800 Philadelphia, PA 19103 1-800-548-4611 National Multiple Sclerosis Society 2 Mill Road, Suite 106 Wilmington, DE 19806 302-655-5610 CHAIR: Marianne Jackson VICE CHAIRS: Valli Baldassano, Larry Kane PRESIDENT: Tami Caesar CHAIR: Maria McCabe VICE CHAIR: Matt Lenzini PRESIDENT: Kate Cowperthwait CONNECT WITH US ONLINE: CONNECT WITH US ONLINE: nationalMSsociety.org/pae n email@example.com nationalMSsociety.org/ded Like us: facebook.com/greaterdelMS Like us: facebook.com/msdelaware Follow us: twitter.com/greaterdelMS Follow us: twitter.com/MSSocietyDE Watch us: youtube.com/nmsspae Watch us: youtube.com/mssocietyde Pin us: pinterest.com/greaterdelvalMS Pin us: pinterest.com/MSsocietyDE ÂŠ2013 National Multiple Sclerosis Society, Greater Delaware Valley Chapter Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned. MSConnection welcomes letters to the editor. Send letters to firstname.lastname@example.org or one of the addresses above. Include your name and a phone number or email address where we can reach you, if necessary. NOTE: We may edit your letter for length and content. 03 NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS LETTER FROM THE PRESIDENTS POWER WE ALL HAVE KATE COWPERTHWAIT, PRESIDENT DELAWARE CHAPTER Multiple sclerosis. Those two words conjure a number of different images for people living with MS and their loved ones, and we would bet that few of them are positive or affirming. Year after year, we see the impact this disease has on the families we serve and, despite the remarkable progress we have made over the recent past, it is hard not to lose hope. Thankfully, there are when the hope TAMI CAESAR, PRESIDENT times is given back to the GREATER DELAWARE MS community. Just VALLEY CHAPTER this September, we experienced two of our most successful Bike MS events ever. Few people understand the sheer enormity of this undertaking – how much staff and volunteer time goes into making sure that every cyclist is taken care of over every mile and that participants have the best possible experience. Between Bike to the Bay and City to Shore, nearly 9,000 cyclists raised nearly $7 million. That’s an incredible feat – a success that is only possible because of the determination of people living with MS and their loved ones. Seeing thousands of people come together for our shared cause is a remarkable and affirming experience; if you haven’t ever attended a Bike MS event, make sure you are part of one next year. The only events that rival Bike MS are our upcoming annual meetings. While these events are smaller in numbers, they are equally important in purpose. This year, both the Delaware and Greater Delaware Valley chapters will be featuring a keynote presentation by Rain Pryor, who will share her story of how her father, comic legend, Richard Pryor, faced the realities of MS with resilience and resolve. It was Richard Pryor who put a face to MS for many Americans, but, of course, that face had a smile. However, his daughter saw the stark realities of MS. “When he found out he had MS, his life slowed down enough to let me in. We cried together and mended and healed old wounds,” she wrote at the time. Because she watched her father’s determination to battle MS, Rain vowed to make it part of her life’s journey as well. It is in tribute to the Pryor family and on behalf of every single one of you facing the challenges of MS that we come together at Bike MS events and the chapter annual meetings. It is by working together that we can gain the power necessary to one day make MS no more. That power comes from within all of us; and it is the power that comes from uniting as a community. Sincerely, Kate Cowperthwait, President Delaware Chapter Tami Caesar, President Greater Delaware Valley Chapter 04 NEWS BRIEFS MS COGNITIVE IMPAIRMENT RATES LOWER THAN PREVIOUSLY REPORTED In a large sample of persons with multiple sclerosis, rates of cognitive impairment were unexpectedly low and few had severe impairment, according to findings of a cross-sectional study reported online August 1 in PLOS ONE (Achiron et al., 2013). “Cognitive decline may appear early in the [MS] disease process and has been reported even at disease onset,” wrote Anat Achiron, M.D., Ph.D., from the Multiple Sclerosis Center of Sheba Medical Center in Tel-Hashomer, Israel, and colleagues. “Prevalence of cognitive impairment in MS has been estimated [at] 20% to 65% of patients. This wide range is probably related MS CONNECTION: FALL 2013 to variation in the disease subtypes, disease duration and level of disability of the MS population studied, as well as to differences in the cognitive assessment scales, procedures and tools used.” The investigators studied patterns of cognitive impairment in 1,500 persons with MS and disease duration of up to 30 to 55 years. PROGRESSIVE MS ALLIANCE LAUNCHED The Progressive MS Alliance is an ever-expanding alliance of organizations from around the world, with current managing members including the Multiple Sclerosis International Federation, National Multiple Sclerosis Society (US), Italian Multiple Sclerosis Society, and MS Society (UK). The purpose of the Progressive MS Alliance is to accelerate knowledge and collaboration worldwide to identify solutions for people affected by progressive MS. By establishing global research priorities and working together with shared knowledge and focused resources, the potential to succeed is greater than ever before. The Progressive MS Alliance is working to connect resources and experts around the world to find the answers and develop the solutions to end progressive MS. The Alliance seeks to accelerate innovative research by enabling global collaboration in building research infrastructure, facilitating knowledge sharing and increasing worldwide research funding capacity to address the current priorities: • Accelerate clinical trials in progressive MS • Understand what drives progression and find new therapies to treat it • Find better rehabilitation and treatments for symptoms to improve quality of life • Discover how nerve cells are damaged and how to repair them to restore function $7 MILLION COMMITTED TO MYELIN REPAIR The National MS Society has just committed $7 million 05 NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS to support 15 new research projects focusing on innovative approaches to repair the coating of myelin that protects nerve fibers and which is destroyed by the MS disease process. Finding ways to restore and protect the damaged nervous system is a key priority of National MS Society’s No Opportunity Wasted (NOW) Campaign research to stop the disease in its tracks, to restore function, and ultimately end MS forever. These new investments, in both commercial therapeutics and academic research, expand the Society’s comprehensive portfolio to 88 current research projects focusing on repairing the nervous system in people with MS, with multi-year commitments totaling $37.8 million. “The idea of rebuilding the nervous system and protecting it from ongoing MS damage was a just dream a few years ago,” noted Dr. Timothy Coetzee, Chief Research Officer of the National MS Society. “Now, because of efforts by the research community as well as focused investments by the Society, we can see a future where people with MS will have treatments that could restore what’s been lost,” he added. ADDITIONAL MS RISK GENES DISCOVERED In the largest study of its kind, a global collaboration of scientists has identified 48 new genetic variants associated with MS, bringing the total number of genetic variants that may influence susceptibility to MS to 110. These findings do not substantially improve the ability to provide genetic counseling to individuals, but should add knowledge about complex biological pathways that lead to the development of MS. The study involved nearly 30,000 people with MS and more than 50,000 controls without MS, and was funded by more than 40 agencies and foundations, including the Wellcome Trust, the National Institutes of Health, and the National MS Society. Nearly 200 investigators of the International MS Genetics Consortium, representing 13 countries, published in Nature Genetics. TRIAL RESULTS: DRONABINOL, AN ORAL CANNABIS/MARIJUANA DERIVATIVE, DID NOT SLOW MS PROGRESSION Results have been reported from a clinical trial testing whether dronabinol (a synthetic Cannabis/ marijuana derivative) slows progression in people with primary-progressive or secondary-progressive MS. This three-year trial, conducted based on previous lab studies suggesting these types of “cannabinoids” may protect the nervous system, was unable to show benefits against progression. n MORE RESEARCH Visit us online at nationalMSsociety.org to stay on top of the latest MS research. 06 RESEARCH FOCUS ON MS RESEARCH A joint meeting held from May 29 to June 1 by the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee on Treatment and Research in Multiple Sclerosis (ACTRIMS) showcased the latest directions in MS research. Here is a selection from more than 200 presentations on research seeking to stop MS in its tracks, restore function to those who have MS and to end the disease forever. STOP MS Researchers at the Colorado Blood Cancer Institute in Denver reported two-year results on a study following 24 people with highly active relapsing-remitting MS who were treated with bone marrow transplantation. Both relapses and disease activity observed on MRI scans MS CONNECTION: FALL 2013 were significantly reduced; however, there was significant loss of brain volume the first year, which then stabilized, and one person died. Other adverse events included excessive levels of uric acid and liver enzymes, and decreased potassium levels. Participants are being followed for a total of five years, and additional research is needed to determine the risks and benefits for people with MS of this experimental procedure. A study at the University of California, Los Angeles, tested whether male and female sex chromosomes influence the response of the nervous system to injury. In female mice genetically engineered to express the male (XY) or female (XX) chromosome, XY mice experienced a more severe MS-like disease. However, immune responses did not differ. If confirmed in further studies, such findings may help to explain why MS progression occurs faster in men, even though MS is more common in women. RESTORE: REHABILITATION Three separate studies reported results on falling issues. â€˘ Debra Frankel, vice president, Programs, Services and Clinical Care at the Society, reported that participants in the Societyâ€™s Free from Falls program improved in balance and walking, and that the psychological impact of falls was reduced, even six months after the program. (For more on how to participate in the Free from Falls program, call 1-800-344-4867 or visit www.national MSsociety.org/freefromfalls.) 07 NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS • At the University of Illinois at UrbanaChampaign, researchers found that fall risk decreased significantly and balance improved in 10 people with MS who participated in a 12-week, home-based exercise program, compared with 12 people who did not participate. The Society is funding a continuation of the study to determine how exercise can be used to prevent falls in people with MS. • Researchers at the Oregon Health and Science University in Portland found that in 53 people with MS taking a range of medications, those taking no medications had a 27% risk of falls and that the risk of a fall increased 33% with each additional medication. Larger studies are needed to confirm how medications might affect the risk of falling, so that clinicians can consider this important aspect of MS management. A Society-funded study at the University of Illinois at Urbana-Champaign found that video-chat sessions with a behavior change coach improved results of a six-month physical activity program among participants. The results also showed reduced fatigue, depression and anxiety. RESTORE: REPAIR Investigators at Endece, LLC reported that the molecule NDC-1308 reduced cell death in the spinal cord of mice with an MS-like disease and activated genes important in the development of myelin-making cells. The company is supporting preclinical research to develop NDC1308 as a possible future treatment for repairing damage in MS. END MS A Society-funded study at University of Miami found that 287 Hispanic/Latinos with MS were more likely to experience symptoms of motor weakness, ataxia (problems with muscle control) and bladder problems, when compared to 275 non-Hispanic whites with MS. Hispanic/ Latinos also responded more favorably to interferon treatments. For MS resources in Spanish and information about Hispanic/Latinos living with MS, visit mueveteMS.org. A study at University of Utah, Salt Lake City, using a new technique called “deep sequencing,” found that the activities of genes that instruct retroviruses was significantly increased in 14 people with primary-progressive MS. Further studies in larger numbers of people to determine the significance of these findings are about to get underway with Society funding. Data collected from the Sonya Slifka Longitudinal MS Study, established by the Society in 2000 to study demographic and disease characteristics, use and cost of health services, access to care, quality of life, treatment and much more, is being made available to qualified investigators for studies on the direct and indirect costs of MS. These include the financial impact of out-of-pocket costs, informal caregiving, pregnancy and mental health treatment. n To read more about the joint meeting and other recent MS research, visit www.national MSsociety.org/research or sign up at www. nationalMSsociety.org/signup to have MS eNEWS delivered monthly to your inbox. 8 RESEARCH EXERCISE & THE BRAIN BY BRUCE BEBO, PHD Emerging evidence across the board suggests that exercise doesn’t just keep us physically fit, it helps our brain function better, too. Scientific presentations on exercise, rehabilitation and quality of life issues at the American Academy of Neurology’s (AAN) annual meeting in March suggest this holds true for people living with multiple sclerosis, as well. EXERCISE’S GOOD EFFECTS A small study from National Multiple Sclerosis Society-supported scientists at the Kessler Research Institute in New Jersey found that 30 minutes of aerobic exercise done three times a week over three months improved memory and increased the volume of the hippocampus, a part of the brain involved with memory. These preliminary results will hopefully encourage further studies that will yield more definitive conclusions and maybe even recommendations. Another study examined the potential of longer-term aerobic exercise to build endurance in people with MS. This study involved 60 people split into two groups: people who experienced fatigue and people who did not. Both MS CONNECTION: FALL 2013 groups performed individualized endurance exercises using treadmills. After six months, both groups showed improved oxygen consumption. However, those who started out with fatigue showed improvement in their fatigue scores, but it took at least nine months of the program to see a difference. So while you may not feel the effects of exercise at first, persistence can pay off! WHILE YOU MAY NOT FEEL THE EFFECTS OF EXERCISE AT FIRST, PERSISTENCE CAN PAY OFF! EXERCISES FOR THE BRAIN Some very interesting data illustrating how the brain reorganizes to adapt to MS damage was presented by a research team from the San Raffaele Hospital in Milan, Italy. This WHAT’S GOOD FOR THE BODY MAY BE GOOD FOR THE BRAIN NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS RESOURCES For more on cognitive issues and MS, visit nationalMSsociety.org/cognition. To learn more about exercise and MS, visit nationalMSsociety.org/exercise or call 1-800-344-4867 to find out about exercise programs in your area. team looked at the impacts of a 12-week computer-assisted course that focused on training to increase memory and attention (the course was previously reported to improve attention and executive thinking abilities). Using functional MRI, which allows a real-time glimpse of the brain at work, they found indicators that brain activity had increased in specific areas. This improvement appeared to persist at least six months after the training was completed. Researchers from Milan and from Kessler also reported that people with MS with more “brain reserve” (larger brain size) and more “cognitive reserve” (increasing the ability to withstand or postpone MS-associated decline in cognition with activities such as doing puzzles or playing music) were at lower risk for cognitive changes associated with brain lesions. Even when brain size is accounted for, those with more cognitive reserve appear to have lower risk for cognitive changes. There’s nothing any of us can do about the size of our brains. But growing evidence suggests that people may be able to build cognitive 9 reserve by engaging in enrichment activities (Words with Friends, anyone?). It’s exciting to think that actions we take, such as mental and physical training, can actually alter brain circuits, improve brain activity and possibly help slow the progression of MS. IT’S EXCITING TO THINK THAT ACTIONS WE CAN TAKE, SUCH AS SOME MENTAL AND PHYSICAL TRAINING, CAN POSSIBLY SLOW THE PROGRESSION OF MS. Summaries of the meeting can be viewed on the AAN’s website at www.abstracts2view. com/aan or visit www.nationalMSsociety.org/ research for an overview of MS-related research presented at the meeting. n Bruce Bebo, PhD, is associate vice president of Discovery Research at the National MS Society, and was previously a research immunologist focusing on the influence of sex hormones on MS. He is a passionate Society volunteer, fundraiser and advocate, fueled in part by the fact that his mother has lived with MS for more than 30 years. Read more of Dr. Bebo’s blog posts about research presentations at the annual AAN meeting at blog.nationalMSsociety.org, where this was originally published. 10 PARTICIPANTS NEEDED RESEARCHERS RECRUITING FOR ESTRIOL TRIAL The University of Pennsylvania is recruiting women with relapsing-remitting, secondaryprogressive, or primary-progressive MS for a 12-month study in which the sex hormone estriol will be compared with inactive placebo for effects on cognitive function. Participants can remain on their prescribed MS medication throughout the study. Estriol levels rise to very high levels naturally during late pregnancy, a time when most womenâ€™s MS disease activity declines. This led some to suspect that estriol may be responsible for this easing of symptoms during pregnancy. Research showed that in mice estriol treatment was indeed protective. They then explored this lead with National MS Society support, showing that estriol decreased disease activity in a small, earlyphase trial of estriol in 12 women with MS. Now the Society is funding a team of investigators at 15 medical centers to conduct a two-year, controlled clinical trial of estriol added to standard therapy to treat MS. MS CONNECTION: FALL 2013 Participants are being randomly assigned to receive oral estrogen (8mg/day) or inactive placebo for one year. The primary outcome is improvement in cognitive function; secondary outcomes under study include measurements from brain MRIs, cognition, quality of life, depression, and fatigue. To learn more about this study, please contact Vanessa Zimmerman at 215.349.5162 or Vanessa.Zimmerman@ uphs.upenn.edu. DATING AMONG SINGLE WOMEN WITH MS If you are a single woman who has been diagnosed with MS and are between the ages of 20-40 or 50-65, you are invited to take part in a study at Ryerson University about understanding the impact of MS in the formation and quality of dating relationships among single women. Participants who take part in this project can expect a short phone call to make sure that you are eligible to particpate in the study, and to complete a 45-60 minute paper survey in your own home at your convenience about how MS has impacted your dating experiences, beliefs about relationships, and self-image. To take part in this study, you must fit the age requirements listed above, have been diagnosed with MS for at least six months, self-identify as presently single, be fluent in English, and be female. NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS 11 If so, researchers at the Kessler Foundation want to hear from you. They are interested in learning more about the factors associated with employment decisions in MS. Individuals who are gainfully employed OR those considering leaving the workforce or feeling as if they need to cut back on hours are eligible to participate. All participants will complete an online survey asking about their work status and various factors thought to be related to managing oneâ€™s MS and ability to work. If you fit these requirements and wish to take part in this study, contact Ryerson University staff at 1-800-964-1437 or MSdating@ email@example.com. Participants will receive a $15 gift card for their time. EMPLOYMENT AND MULTIPLE SCLEROSIS Are you gainfully employed? Are you thinking of leaving the workforce or feeling as if you need to cut back hours because of your MS? GADGET CORNER MEZZALUNA ROCKING KNIFE To be eligible, participants must be: (1) between the ages of 20 to 64; (2) diagnosed with definite MS; and (3) have no other neurological illness. If you are interested in participating in this study and meet the above criteria, please contact Juliane Armstrong, B.S. at 973-3248457 or firstname.lastname@example.org, or Lauren Strober, Ph.D. at 973-324-8459 or email@example.com. You will receive an email with a link to complete the study. Participants will be compensated for their participation. n Similar to an Alaskan Ulu knife, the rocking knife has a curved blade that you can use with one hand. In addition, people who use them in their kitchens say they take less strength and require less strength to operate. You can find a variety of rocking knife sets at various online retailers. 12 NEED HELP AT WORK? THE NATIONAL MS SOCIETY AND THE JOB ACCOMMODATION NETWORK (JAN) CAN HELP Employment. It’s important to everyone, especially people living with disabilities. National MS Society staff members are often asked by people living with MS if they should continue working, whether they should disclose their diagnosis and how to ask for an accommodation that would make doing their job easier. Unfortunately, people living with disabilities often leave the work force without exhausting all possible options. Many times, they are simply not aware of their rights and the resources available to them. Two of the most common reasons people discontinue working include issues around disclosure and accommodations. Under the Americans with Disabilities Act (ADA), an individual has the right to choose whether to disclose their condition to their employer. If an individual decides to disclose their disability to their employer, that individual has the right to MS CONNECTION: FALL 2013 request a reasonable accommodation, as long as it does not cause an undue hardship for the employer. Determined case by case, this is an accommodation that would cause significant expense or business hardship for the employer. Reasonable accommodations are changes to the work environment or to the way an essential function job function is performed. An accommodation allows a qualified individual with a disability to enter or continue employment by removing or modifying on-the-job-barriers to successful job performance. Examples of reasonable accommodations could include: • A flexible work schedule • Working from home occasionally • Adaptive computer technology • Visual aids • Adjustments to desk height to fit a wheelchair underneath Before requesting an accommodation, you must identify your essential job functions and whether or not your MS symptoms are affecting your ability to perform these functions. It’s a good idea to ask your employer for a copy of your essential job functions. Understanding what accommodations are and strategizing the best solutions for each individual is an important piece of working successfully with a disability. Requesting 13 NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS accommodations is a collaborative process with your employer, yet the majority of the responsibility lies on you, the employee. It is best to be prepared to negotiate and have back-up solutions if the first accommodation you request is denied. End the conversation on a positive note by explaining how the accommodation will help you be a more productive employee. The Win-Win Approach to Reasonable Accommodations, Focus on Employment, and more. These publications can be obtained by visiting: www.nationalmssociety.org/ multimedia-library/brochures/employmentissues/index.aspx or calling 1-800-FIGHTMS. Understanding your rights will help you protect yourself. Ultimately, an employer is looking for an individual with a certain set of skills, so focus on your skills and abilities to determine if you could be a match for a particular job. Finally, know what resources are available and take advantage of them, including the following: AMERICANS WITH DISABILITIES ACT (ADA) The Job Accommodation Network (JAN) is the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues. Working toward practical solutions that benefit both employer and employee, JAN helps people with disabilities enhance their employability, and shows employers how to capitalize on the value and talent that people with disabilities add to the workplace. For more MS specific information and a sample letter requesting an accommodation, visit www.askjan.org or call 1-800-526-7234 The National MS Society can provide assistance and support regarding your employment issues. The Society has a variety of brochures that cover accommodations and other employment concerns including, ADDITIONAL RESOURCES Visit ada.gov for more information and technical assistance on the ADA, or call their information line at (800) 514-0301. ADA NATIONAL NETWORK The ADA National Network (1-800-9494232), provides information, guidance and training on the ADA, tailored to meet the needs of business, government and individuals at local, regional and national levels. The ADA National Network consists of ten Regional ADA National Network Centers located throughout the United States that provide local assistance to ensure that the ADA is implemented wherever possible. Search for comprehensive ADA information, services, products, training and guidelines, or visit your Regional ADA National Network Center website for local events and support. n 14 LIVING WITH MS SOCIETY SCHOLAR LEARNS FROM MS BY LAUREN MEINTSMA MS CONNECTION: FALL 2013 stacle in her life. As an English teacher, she has had difficulty with the speech issues that can come with MS. Even though MS has meant changes at home for Alexander, he says that having a family member with MS has helped him grow. In his scholarship application, he emphasized the compassion he has for his mother and for others living with MS, the patience he must show on a daily basis and his responsibility to believe in himself and his family. Alexander has also gotten involved in Society fundraising events alongside his mother. This past April, he was a fundraiser for his mother’s Walk MS team in Carlsbad, Calif. “This disease is affecting lives, and I just hope that through our collective effort, we can find a cure,” he says. Multiple sclerosis shouldn’t stand in the way of an education, which is why the National MS Society’s scholarship program exists — to help highly qualified students living with MS or who have a parent living with MS achieve their dreams of going to college. Since its creation, the program has continued to grow, and in 2013, nearly $1.2 million was awarded to 679 scholars. Thirty-one of those students are Hispanic. An exceptional student selected from the Pacific South Coast area is Alexander Salazar, a highschool senior from La Mesa, Calif. His Hispanic roots come from his Colombian father. At the age of six, he moved to the United States with his mother. Then, in 2009, Alexander’s mother was diagnosed with MS. Alexander shared that while his mother’s MS is not severe, it is an ob- Alexander will be using his Society scholarship to attend Chapman University in Orange, California. He wants to become a broadcaster, scriptwriter or actor. He says he is motivated by his mother. “She sacrificed a great deal of her life in order to give me opportunities she never received. It’s the reason I have so much ambition to be successful.” The deadline for 2014 scholarship applications is Jan. 15, 2014. For more information, call 1-800-344-4867 or visit www.nationalMSsociety.org/scholarships. n Lauren Meintsma is a marketing and public relations intern with the Upper Midwest Chapter and is studying Communications and French at Luther College in Decorah, Iowa. NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS 15 LIVING WITH MS COMMIT TO EATING WELL Take control of your health, starting with a commitment to eat well. Here are some suggestions for how to do that from the Can Do MS staff and Andrea Glenn, a Society volunteer diagnosed with MS in 2003. • Eat three meals every day and always have breakfast. People who skip meals tend to overeat later. • Make healthy snacks and meals ahead of time so you don’t give in to temptations. • Eat more vegetables and three pieces of fruit every day. Add leafy dark greens to your lunch. Snack on raw fruit and vegetables such as carrots, apples or celery. • Be aware of portion size. Many restaurant meals are large enough to feed two people. Take half home for lunch the next day, or split an entrée with someone else. • Eat whole grains such as brown rice, whole grain bread and whole grain cereals. • Enjoy a couple of low-fat dairy products every day, such as 1% milk or yogurt. • Use olive oil or canola oil (in moderation). • Read food labels and pay special attention to saturated fats and trans fats. • Drink plenty of water—it’s calorie free! • Enlist a friend or family member to share your goals for better eating. It helps to be accountable to someone else. • Keep a food diary. Writing down everything you eat will help you better evaluate whether you’ve improved your food habits. NUTRITION TIPS FOR MANAGING FATIGUE • Have a small snack every few hours to refuel. Pair a protein (such as low-fat cheese, 1 tablespoon of peanut butter, handful of almonds) with a fruit. • Shrink meals and eat more frequently. For example, save half your lunch and eat the rest three hours later. • A small protein snack in the afternoon, such as a cheese stick or peanut butter, can help you be more alert. • Avoid large portions and desserts. Both will increase fatigue. • Avoid too much caffeine. It can lead to restless sleep and increased anxiety. Visit www.nationalMSsociety.org/diet for links to recent research, recipes and articles, brochures, videos and more. n 16 ACA FACT SHEET SERIES KEY CONSIDERATIONS FOR CHOOSING A HEALTH PLAN Virtually everyone in the US will face choices about selecting and enrolling in a health insurance plan at different times in their lives. If you or a loved one is living with MS, you know these choices can have significant impact on your personal and family finances, as well as your access to health care. Fortunately, the process of learning about health coverage, comparing among available coverage options and enrolling in the plan that best meets your needs is getting easier now that major provisions of the Affordable Care Act (ACA) are taking effect. • Most people living with MS and their families that already have coverage offered by an employer will likely have few, if any, changes in their choice of jobbased health plans. They are also most likely to have past experience with their plan’s annual open enrollment period. If this describes you, your coverage choices are not expected to change significantly with the new law, although MS CONNECTION: FALL 2013 you may notice other differences to your plan and benefits. Reviewing the “Key Considerations” below before your annual open enrollment period begins may be helpful to you. Others who are currently without health insurance, as well as those who buy their own (“individual”) coverage, and certain others eligible for job-based coverage from smaller businesses will be directed to the new online health insurance Marketplace (or “Exchanges”) to start the process of comparing and enrolling in a health plan as of October 2013. In addition to the Key Considerations below, there are additional considerations described further on for those who will be purchasing coverage through the Marketplace. • Among the new legal requirements for health insurers and plans are new standards for all written descriptions of plan benefits, their costs and explanations of how the plan works. To assure prospective plan members get information that helps make “apples-toapples” comparisons between different health plan options, insurance companies and group health plans must provide: »» A short, plain-language Summary of Benefits & Coverage (SBC) similar to this sample »» A Uniform Glossary of terms used in health coverage and medical care If you are a current or prospective plan member, you have the right to a customized NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS version of the SBC for every health plan you are eligible for during your initial open enrollment period, before you re-enroll and at any time upon request to the health plan. There is a lot of information on each SBC that is specific to each health plan, and it is recommended that you take your time reviewing it and asking questions. Additional details such as which prescription drugs are included in the plan’s formulary may be obtained from the plan through a toll free number or a hyper-link on the SBC form. The standardized glossary is an important resource for definitions of health insurance terminology, such as “co-insurance”, “medically necessary”, “out-of-pocket limits”, and more. Understanding these terms can help you compare your plan choices and take best advantage of the coverage you get from a health plan. • Look at all of your potential costs in a health plan, and not just the premium. A good rule of thumb is the higher the monthly premium, the greater the coverage (and lower copayments and/ or co-insurance when you use health care); the lower your premium, the less coverage from the plan (and higher the costs to you when you use care). • Health plans typically cover a greater portion of the total cost of healthcare services when you use doctors, hospitals, pharmacies and other health care providers that are in the plan’s provider 17 network. (To be an “in-network provider” means the provider has agreed to the plan’s pre-negotiated payment rate.) Examine the list of network providers of any health plan you are considering, and don’t hesitate to ask for verification as these lists can change frequently. It may be necessary to use out-of-network provider(s) for certain needs from time to time, but it is best to know in advance whether a provider is ‘inside’ or ‘outside’ of your network so you can plan accordingly. • Coverage of prescription drugs can be especially important for people living with MS, and health insurers and plans are free to pick and choose which drugs to include on their formularies (lists of prescription drugs the plan will cover) and which to exclude. Carefully check to be sure that the drug(s) you or your family member living with MS takes is on the formulary before committing to a health plan. • There can also be wide variation in the amount of coverage provided for drugs on the formulary, and this can be especially true for the so-called ‘specialty pharmaceuticals’, such as MS drugs. Does the plan(s) you are considering use ‘tiered’ formularies, with different out-of-pocket costs for covered drugs? If yes, the amount you will have to pay for a prescription in a typical tiered drug plan will cost you the least for a Tier 1 (generic drug), a higher amount for a 18 preferred Tier 2 brand name drug, a still higher amount for a non-preferred Tier 3 drug, and the highest amount in out-ofcosts for a Tier 4 or ‘specialty’ drug. • Other new standards set to take effect in 2014 will help assure that health plans provide at least a certain minimum value (MV) of coverage overall. With exceptions, the minimum value of coverage offered by individual and group health plans in the future is 60% of all covered benefits. The MV amount for any health plan offered to you should be made very clear. • Remember to take advantage of your preventive health benefits, such as all evidence-based cancer screening tests and vaccines. Under the Affordable Care Act, these benefits must be included in all individual and group health plans with no additional charge to you in deductible or copayment amount. The inclusion of these benefits can help you save money and take care of your health. • Take your time evaluating your plan options. Initial and open enrollment periods are designed to allow prospective members adequate time to consider their options and completing the enrollment process before the deadline. All important dates and deadlines should be clearly presented, including the deadline for enrolling and the effective date (the day when coverage actually starts). MS CONNECTION: FALL 2013 ADDITIONAL CONSIDERATIONS FOR CHOOSING A HEALTH PLAN IN THE MARKETPLACE OR EXCHANGE • All of the health plans sold through the Marketplace of Exchanges must cover the same general ‘essential health benefits’ (listed below), but they will vary by the amount of coverage they provide, and in the specific services they cover under each. There will be four categories of Marketplace insurance plans: Bronze, Silver, Gold, and Platinum. These “metal tier” categories were created to help you choose a plan that’s right for you. Platinum plans will have the highest premium and will cover approximately 90% of the costs of covered services, leaving only 10% of the cost to you. Gold level plans will cover approximately 80% while you would pay 20%; silver will cover 70% and bronze level plans will cover approximately 60%. (As noted above, 60% is the minimum value that all group plans must offer or face a potential penalty.) • The one exception to the ‘metal tier’ plans described above will be a catastrophic plan for certain eligible individuals only. These plans will only be available to people under age 30, and to others with low incomes for whom other insurance is not considered affordable per income guidelines in the federal law. A catastrophic plan is a high deductible plan, requiring you to pay all of your medical costs up to a certain amount, usually 19 NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS several thousand dollars. Costs for essential health benefits over that amount are generally paid by the insurance company. Catastrophic plans only cover preventive benefits and up to three primary care visits per year at no cost. • The essential health benefits that all qualified plans must cover are: »» Ambulatory patient services (outpatient care you get without being admitted to a hospital) »» Emergency services »» Hospitalization »» Maternity and newborn care (care before and after your baby is born) »» Mental health and substance use disorder services, including behavioral health treatment (this includes counseling and psychotherapy) »» Prescription drugs »» Rehabilitative and habilitative services and devices (services and devices to help people with injuries, disabilities, or chronic conditions gain or recover mental and physical skills) »» Laboratory services »» Preventive and wellness services and chronic disease management »» Pediatric services Remember that the essential health benefits are general terms, and coverage of specific services, items and medicines will vary from plan to plan. n MONEY MATTERS MAKING HEALTH INSURANCE CHOICES Starting Oct. 1, most people who don’t already have health insurance will have new options for coverage when the Health Insurance Marketplace—a component of the Affordable Care Act—begins enrollment for coverage to begin Jan. 1, 2014. The Web-based Health Insurance Marketplaces, (sometimes called “exchanges”) are a new way of shopping for health insurance coverage, allowing people to compare plans, get tax credits and other cost help. The program also includes governmentcertified “navigators,” who are expert health insurance counselors funded by the marketplaces to provide unbiased information, education and enrollment help to consumers at no cost. Coverage through marketplace plans is guaranteed regardless of pre-existing conditions, such as multiple sclerosis, and covers preventive and needed care, such as doctor’s visits, hospitalizations, maternity leave, emergency room care and prescriptions. All plans that participate in the marketplace have to show costs and what is covered in simple, understandable language that allows people to make “apples to apples” comparisons between plans. Enrollment begins October 1st at www.healthcare.gov. Call the Society at 1-800344-4867 or visit www.nationalMSsociety.org/ ACAkickin for more information. n 20 THANK YOU 2013 CHALLENGE WALKERS! This year, Challenge Walk MS hit the road and headed south to the beautiful Eastern Shores of Maryland. The Greater Delaware Valley Chapter partnered with the Maryland Chapter of the National MS Society and brought you the first ever Challenge Walk MS: Philadelphia Freedom Pass. Together on Saturday and Sunday, September 7-8, participants walked an inspirational 31 miles of the scenic Chesapeake Bay and raised $100,000. We saw old friends, made new connections and celebrated our efforts in moving forward and creating a world free of MS. Thank you for your unwaivering dedication and support to Challenge Walk MS. We couldnâ€™t make a difference without you. n MS CONNECTION: FALL 2013 CHALLENGE WALK MS 2013: PHILADELPHIA FREEDOM PASS 21 NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS CONTINUED FROM COVER It was then that she made it her goal to get involved as an educator and an advocate. “I got very interested in MS because I wanted to find a cure to help. It was my way of changing the feeling of being very hopeless to feeling very hopeful,” Pryor said. Since then she has traveled around the country speaking out at countless events to raise awareness of the disease. “It gave me the feeling that I had a sense of power over it instead of it having power over me,” Pryor said. To show her support to the MS cause, Pryor starred on an episode of Chicago Hope with her father to depict a family dealing with MS. In 2005, Richard Pryor passed away from a heart attack after suffering complications from MS for several years. A year later, Pryor came out with a memoir retelling her childhood experience and life with her father, Jokes My Father Never Told Me. As a spokesperson for the National MS Society, she dedicates her life to educating families and caregivers while also making appearances at MS events around the United States and abroad. “It’s not just about my dad anymore; it’s about the other people I’ve met who have now become my extended family,” Pryor said. Although the fight against MS is not an easy one, Pryor believes it is well worth it. “Each year we get closer to the hopes of a cure. At times it seems like it’s far out of reach, but it really is right in front of us,” Pryor said. People living with MS throughout the region will have the opportunity to hear Rain Pryor share memories of her father and her thoughts about her role in the MS movement at the upcoming annual meetings of our chapters. n JOIN US FOR OUR 2013 ANNUAL MEETINGS Meet National MS Society trustees and staff, hear about the successes and challenges of the past year and learn about the latest research and treatment news. DELAWARE CHAPTER WEDNESDAY, DECEMBER 4 • 6 P.M. EMBASSY SUITES NEWARK GREATER DELAWARE VALLEY CHAPTER THURSDAY, DECEMBER 5 • 5:30 P.M. HILTON PHILADELPHIA CITY AVENUE Note: Dinner will be served. Space is limited so please register no later than November 16 by visiting calendarMS.org or calling 1-800-FIGHT-MS. “EACH YEAR WE GET CLOSER TO THE HOPES OF A CURE. AT TIMES IT SEEMS LIKE IT’S FAR OUT OF REACH, BUT IT REALLY IS RIGHT IN FRONT OF US.” — RAIN PRYOR 22 MS CONNECTION: FALL 2013 ANOTHER SUCCESSFUL YEAR FOR THE BIKE MS BIKE TO THE BAY AND CITY TO SHORE RIDES! Bike to the Bay 2013 THANK YOU BIKE MS VOLUNTEERS The National MS Society staff and board salute more than 1,250 Bike MS volunteers who helped make Bike to the Bay and City to Shore successful once again! Your hard work, dedication, and enthusiasm never fail to amaze us. You are the backbone of this long time tradition, which wouldnâ€™t be possible without you. A strong volunteer committee steers the planning for both events each year. We would like to recognize the committees, as well as Bike to the Bay Chairman Rick Pulling and City to Shore Chairman Dana Doan for their outstanding support and leadership. Thousands of hours of preparation go into 23 NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS these events, and it takes a village to ensure that everything runs smoothly and safely. From our route markers to our rest stop captains, and our shuttle drivers to our finish line coordinators (and all the jobs in between), we appreciate all your time and effort to put on seamless events. The most common compliment we receive from cyclists each year is about our friendly volunteers who are always so welcoming. You ensure a positive experience and a safe ride for all our participants, keeping them coming back year after year. Not only do we have loyal participants, but we have very committed volunteers with some being involved for many decades. Bike MS has become a homecoming or family reunion for so many - and our staff looks forward to welcoming the family back year after year. Thank you again. See you in 2014! 24 DRIVING WITH MS Few things represent freedom as much as the ability to get behind the wheel of a vehicle and go wherever and whenever you want. That liberty is even more important for people living with a disease that can impair their ability to walk. “People see driving as an inherent right,” explains Maria Schultheis, Director of Clinical Training at Drexel University and the Director its Applied Neurotechnologies Lab. “For many people living with MS, when their symptoms get worse, they focus on addressing them rather than considering whether they should change their driving habits.” For eight years, Drexel Lab has focused its efforts on examining the effects of MS on everyday actions, such as driving. While each person living with MS is different, research conducted by Schultheis and her team using driving simulation technology has proven that many MS symptoms cause major challenges in operating a motor vehicle. Cognitive effects, such as problems with attention or concentration, make focusing on driving difficult for people living with MS. Symptoms such as these create a lack of the ability to multi-task, something that’s essential when operating a motor vehicle. Having these symptoms, however, doesn’t mean you will have to stop driving MS CONNECTION: FALL 2013 altogether. It usually means limiting distractions in the vehicle – such as a GPS or too many passengers – something Schultheis says many people figure out on their own. “People living with MS are very good at selfimposing these rules,” she explains. “They are so attuned to their bodies, that if they wake up one day and feel fatigued, they decide not to drive.” MS can also slow a person’s thinking which can be detrimental to any driver on the road. With a lack of quick reflexes, those with heightened symptoms could be posing a risk to themselves and others, especially when multi-tasking or in challenging driving conditions. Visual problems such as blurring, lack of peripheral vision and issues with depth perception can make driving difficult. In addition, fatigue and tiredness, a chronic symptom of the disease, can make doing any task a struggle and can add to lack of focus. Physical difficulties such as weakness in upper and lower extremities can also affect the motor skills needed for driving. If you are unsure if it is safe for you to drive, a comprehensive driver evaluation can be done including a neuropsychological and visual examination. In fact, the experts at Drexel’s Applied Neurotechnologies Lab recommend that people living with MS have an evaluation completed to acquire a baseline to compare to in the years and decades to come. For more information, call 1-800-FIGHT-MS. 25 NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS IF YOU ARE LIVING WITH MS AND CONTINUE TO DRIVE, IT IS IMPORTANT THAT YOU TAKE CERTAIN PRECAUTIONS. • Limit or minimize driving during days when symptoms are heightened and fatigue is increased • Take steps to eliminate distractions whenever possible • Be sure to avoid driving at night and in bad weather, especially if you suffer from vision impairments • Use adaptive driving equipment, such as hand controls and pedal extensions, if necessary. n DREXEL MS CLINIC NAMED PARTNER IN MS CARE The National MS Society has named the Drexel MS Clinic as a Partner in MS Care. Director Dr. David Tabby, D.O./Neurology has been a heavily involved supporter of the Society as a committee member, guest speaker, as well as being an active Bike MS fundraiser. Tabby was also a founding member of the chapter’s Disease Management Work Group which was designed to create opportunities and build awareness so that those with MS had access to the best practices available. As a local Philadelphia neurologist, Tabby revived the MS program at the Medical College of Pennsylvania Hospital while also developing the Drexel MS program at Hahnemann University Hospital. As a health care provider, Dr. Tabby provides the widest DAWN JACKSON, KEVIN MOFFITT, YVONNE NYCE, range of TAMI CAESAR, DR. DAVID TABBY, MARIANNA care pos- DOLAN, KATHRYN MITCHELL sible to patients living with MS at Drexel University as well as a community health center in North Philadelphia. While serving the most vulnerable population within our chapter area, Dr. Tabby accepts Medicaid (a rarity among neurologists) and is also fluent in English and Spanish—providing flexible care to all types of patients. Dr. Tabby also refers patients directly to the Society when appropriate. The Partners in MS Care program recognizes and supports quality MS care. A Partner in MS Care is designation by the National MS Society for health care professionals that demonstrate knowledge of and experience with MS care and that also work closely with the Society. The Partners in MS Care program recognizes optimal care to individuals and families living with MS who often have specific needs. 26 A CLEAR FINANCIAL FUTURE FOR PEOPLE LIVING WITH MS Consumers have been relying on Clarifi as a resource for nearly 50 years. Formerly Consumer Credit Counseling Service of Delaware Valley, Clarifi is a non-profit organization with a mission to help consumers “identify and secure their most important assets”. For the past two years, Clarifi has been offering their services in Delaware at the office of the National MS Society, Delaware Chapter. Clarifi provides a variety of personal finance counseling options and education programs to clients. Each counseling session is offered in a confidential setting, face-to-face or via telephone. WHAT TO EXPECT AT A COUNSELING SESSION Counseling sessions last 1-2 hours (depending on the service type) and clients are encouraged to follow up as needed. Counselors and other staff also follow up to determine whether each client has been able to reach his or her goals. All clients receive a personalized assessment of their financial MS CONNECTION: FALL 2013 situation and an action plan and budget that are keyed to their current issues and future goals. MANAGE CREDIT CARD DEBT For those struggling with credit card debt, Clarifi offers Debt Repayment Counseling. Clarifi helps clients pay off their debts through debt reduction counseling and Debt Management Plans (DMPs). In debt management counseling, the client and counselor examine the client’s financial information and determine the best course of action to help the client pay down debts. HOUSING DEFAULT & DELINQUENCY COUNSELING Clarifi works with struggling homeowners in all stages from those who are current but facing potential future delinquency to those whose homes are scheduled for sheriff’s sale. The counselor and client will first determine the reason(s) that the client is delinquent. They then complete a current budget analysis and work to establish a realistic budget, and discuss bringing the mortgage current with only budget concessions. If this is not possible, they discuss whether a client’s financial situation is likely to change soon and/or whether the client has assets that can be liquidated to cure the default. To make an appointment at the Delaware Chapter’s office in Wilmington, call Clarifi at 800-989-2227 or visit clarifi.org for more information. n 27 NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS DELAWARE PROGRAMS ONGOING AND UPCOMING PROGRAMS CARING HANDS PROGRAM This fall we again offer our Caring Hands Program to Delaware residents to provide help with chore services in and around the home. If you have a project or two where you need help – raking, yard work, house cleaning, decluttering - please contact the chapter at 302655-5610 or 1-800-FIGHT MS, option #2. If you would like to volunteer or get a group together to provide this much needed service, please contact the chapter and we would be happy to match you with a person needing help. FOURTH ANNUAL CAREGIVER ESSAY CONTEST Do you have a caregiver that you want to recognize for his or her outstanding commitment and care? Enter the essay contest and you could win a weekend getaway for your caregiver and a guest to Rehoboth Beach! Visit our website for more information or contact Debra Veenema at debra.veenema@ nmss.org or 302-655-7659. n WAYS TO GIVE GIVE AT THE OFFICE Every year, people nationwide help bring us closer to a world free of multiple sclerosis by contributing through their employer’s charitable giving campaign. Most campaigns kick off in the fall, so if you’ve been looking for an easy and efficient way to join the movement, act now. Simply designate your annual pledge to the National MS Society. Your donation will be automatically deducted from each paycheck to fund cutting-edge research and provide programs and services to help people affected by MS move their lives forward. Federal government employees and military personnel are eligible to participate in the Combined Federal Campaign (CFC), the nation’s largest workplace giving program. If you participate in the CFC, designate your gift to the Society using CFC#11409. If your company offers a workplace giving program, look for the Society listed under Community Health Charities. If your employer doesn’t offer a giving program, talk to your benefits administrator or call us at 1-800-344-4867, option #2, to see if we can help. n 28 ADVOCACY LOCAL UPDATES DELAWARE SENATE BILL 56 RELATED TO DENTAL COVERAGE FOR INDIVIDUALS ON MEDICARE SB 56 related to dental coverage for individuals on Medicare will be watched closely by the chapter. A fiscal note was attached at the end of the legislative session and it’s substantial: $6.2 million for 200,000 patients. Its passage will likely hinge on the financial health of the state’s budget as we move through the 2014 fiscal year (July 1 to June 30). MS CONNECTION: FALL 2013 DISCUSSIONS BEGIN FOR PATIENTS WITH MOBILITY ISSUES The Delaware Chapter began a discussion with the University of Delaware’s Center for Disability Studies on the development of a list of medical practitioners in the State who are able to see patients with mobility and transference issues. This information is not currently available to Delawareans and the Chapter is advocating for the creation of such a listing or database. Ideally, this information will ultimately reside with the State’s Aging and Disability Resource Center (ADRC). SPECIALTY TIER PRESCRIPTION DRUG COVERAGE BILL BECOMES LAW SENATE BILL 42 RELATED TO MEDICARE SUPPLEMENTAL INSURANCE On July 23, 2013, Delaware’s Governor Jack Markell signed into law a bill that places limits on costs for prescription drugs that treat many major health problems, including multiple sclerosis. The final provisions of the law reflected hard work by many different groups within the health care community, including focused efforts by the Delaware Chapter of the National MS Society. SB 42 was signed into law on July 15, 2013 and will become effective January 1, 2014. For the full bill, please refer to the Delaware General Assembly website at http://legis. delaware.gov/ and utilize the bill tracking feature in the left navigation pane. The Chapter continues to attend the DE Health Care Commission Meetings. One of the main issues that is the current focus of the group is the Affordable Care Act (ACA) and its implementation as well as the creation of the health care exchange. As the ACA is rolled-out in 2014, the chapter intends to continue to closely monitor the delivery of health care to Delawareans, especially 29 NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS The Health Care Commission and stakeholders are working on a Center for Medicare & Medicaid Innovation Plan to improve health, improve the patient experience and to reduce costs. More information can be found at: http://dhss. delaware.gov/dhss/dhcc/cmmi/index.html NEW JERSEY NJ MS TASK FORCE UPDATE The New Jersey Multiple Sclerosis (MS) Task Force continues to meet regularly as it works to complete its goal by year end. The MS Task Force was signed into law earlier this year by Governor Chris Christie. The legislation created a statewide task force to examine the diverse issues impacting New Jersey residents with multiple sclerosis. Part of the Society’s Unified State Policy Agenda, state partnerships like the NJ MS Task Force raise awareness about MS, declare people with MS a priority and allow people with MS on the task force to be active participants in the solution. In July, the Task Force held a full day meeting with representatives from state departments and agencies. The meeting provided valuable insight into the programs and services currently being provided through the state, as well as an opportunity to explore new projects underway. The Task Force will present a written report of recommendations to the Governor and NJ Legislature in December 2013. For more information or questions on the NJ MS Task Force, please contact Stephanie Hunsinger at firstname.lastname@example.org. PENNSYLVANIA EVERYDAY MS We are launching a new Twitter campaign to educate legislators about MS, and the daily challenges and triumphs of a person living with MS. Frank Austin, PA Government Relations Committee member will be tweeting daily about his life with MS. Frank will tweet about traveling in a wheelchair, general accessibility issues, and other issues impacting people with MS. Follow the campaign on Twitter @MScanPA. Retweet Frank’s tweets, offer comments of support and help us build awareness amongst our legislators! JOIN THE DISCUSSION ONLINE as it impacts our members. For the latest information regarding health plans, rates, and health insurance reform, please refer to the State of Delaware’s website: www. choosehealthde.com/Health-Insurance. PA: msactivepa.wordpress.com facebook.com/MSPACAN @MScanPA NJ: msactivenj.wordpress.com facebook.com/MSNJCAN @NMSSNJCAN 30 MS CONNECTION: FALL 2013 FACE OF MS: SHRADDHA PATEL AS A PHYSICIAN ASSISTANT AT CHRISTIANA CARE NEUROLOGY SPECIALISTS IN NEWARK, DELAWARE, SHRADDHA PATEL HAS BEEN FACED WITH MANY CHALLENGES IN TREATING PATIENTS THAT LIVE WITH MULTIPLE SCLEROSIS. AS AN UNDERGRADUATE STUDENT, PATEL FOUND HER CALLING AS A PHYSICIAN ASSISTANT AND DECIDED TO SPEND HER LIFE HELPING THOSE LIVING WITH MS TO LIVE A STABLE LIFE. WHAT MOTIVATED YOU TO BECOME A PHYSICIAN ASSISTANT? I had always wanted a career that would involve caring for others. When I was going through my undergraduate degree, I learned about the physician assistant (PA) profession. After shadowing many physicians as well as PAs, I realized that the PA profession was my calling. I felt that this profession would suit me and allow me to attain my goal of helping others. WHAT IS YOUR ROLE IN PATIENT CARE? I work closely with Dr. Silversteen, who is our MS Specialist here in Delaware. As part of the comprehensive MS center, I play an essential role in providing quality care to every patient with MS. I see my own patients as well as Dr. Silversteen’s patients. I formulate their diagnosis and treatment plans. I frequently accommodate patients who need to be seen on an urgent basis for an acute flare up of MS, thus providing patient care in a timely manner. WHAT IS THE MOST REWARDING PART OF YOUR JOB? Being able to make a positive difference in someone’s life. WHAT IS THE MOST CHALLENGING? I never realized how often I would have to explain my profession. Patients get confused at 31 NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS times about our role in health care and don’t always realize that PAs practice medicine, under the direction of a physician. I use this opportunity to truly educate my patients about PAs and how we function in health care. In order to become a physician assistant, we have to complete a rigorous master’s degree program which follows a medical school model. We have to pass the national board exam and get recertified periodically to maintain our medical license. I have a lot of autonomy in the way I practice medicine but I also reassure my patients that I can always consult my supervising physician. WHAT ARE THE BIGGEST CHALLENGES YOU SEE IN TRYING TO HELP PEOPLE LIVING WITH MS? The biggest task is finding the right treatment for your patient. At this point, we have several disease modifying treatments for MS but medications are not perfect and they all come with certain risks. It is very important to discuss all the treatment options in detail so that patients feel comfortable being on a medication long term. The medications are also expensive and often financial constraints and insurance regulations can hinder patient care. WHAT MOTIVATES YOU TO WORK EVERY DAY? To do everything in my ability to improve a patient’s quality of life, whether it’s treating their MS relapse or helping with side effects of a medication or spending time with the newly diagnosed MS patient in coping with their diagnosis. DO YOU HAVE ANY STORIES THAT STICK OUT IN YOUR MIND? When I was in Physician Assistant (PA) School, I was on my E.R. rotation and there was a patient who came in with the worst headache of her life. She needed a CT of her head. She refused to get the CT because she was very claustrophobic. I explained to her the importance of getting a CT to rule out any serious neurological problems. In order to reduce her anxiety, I offered to stand right next to her during the CT so she finally agreed to it. I was there for her, holding her hand the whole time. It turned out that she had a small bleed in her brain. In the end she was fine but I learned that it is important to put yourself in the patient’s shoes. I always take my time and listen to my patients; their story is the most crucial piece of the puzzle to make their diagnosis. I explain everything in a way that they can understand and make every effort to make them feel comfortable. I treat my patients how I would want my family members to be treated by another health care provider. n SUPPORT KRISTINE FLANNERY, LOCAL ARTIST LIVING WITH MS ST. ASAPHS ROAD GALLERY OCTOBER 4 - 28 ST. ASAPHS RD & CONSHOHOCKEN STATE RD GALLERY HOURS: 9 A.M. - 3 P.M. MON - FRI THIRD STREET GALLERY OCTOBER 30 - DECEMBER 1 58 NORTH 2ND STREET, PHILADELPHIA, PA GALLERY HOURS: 12 - 5 P.M. WED - SUN Free Matter for the Blind or Handicapped 30 South 17th Street, Suite 800 Philadelphia, PA 19103 ADDRESS SERVICE REQUESTED 1-800-FIGHT-MS n nationalMSsociety.org E V I G O T E M I al MS n o i t a eN n to th und research o i t a n o f d help us To make a ar-end e o y s l a a l g l i MS. t it w makin h u t r i b e w , d i e s g l onate.” n ib in o D t v c “ i c l u e n s s d e o a e i e l l d k i close, p nation be tax- s of local fam y.org and clic a o t s t d usan ur do Socie 3 draw As 201 ot only will yo ices to the tho NationalMS erv isit .N Society ide essential s HT-MS or v v IG and pro call 1-800-F n, donatio AT