2016 ISSUE 2 DELAWARE, SOUTHEASTERN PENNSYLVANIA & SOUTH JERSEY
MSCONNECTION NEWSLETTER
SISTERS TAKE ON THE CHALLENGE OF A LIFETIME Family is at the heart of everything that sisters Bonnie and Karen do. But their family is a little bigger than, as Karen describes it, their “big, Catholic, South Jersey family.” Family to them means friends, donors, supporters and fellow Challenge Walkers.
When Bonnie was diagnosed with multiple sclerosis in 2002, Karen, who lives in Tennessee, said, “It was like somebody had punched me in the stomach.” She was afraid that the disease would change her vibrant, active and energetic older sister.
CONTINUED ON PAGE 10
INSIDE 09 THIS ISSUE
BREAKTHROUGH PRIMARYPROGRESSIVE DRUG
12 14
20 22
Q&A ON EXERCISE AND MS
I RIDE WITH MS: SALLY
8 STEPS TO TAKE IF YOU ARE AFRAID OF LOSING YOUR JOB
FACE OF MS: SHAY
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MS CONNECTION: 2016 ISSUE 2
A great deal of information is distributed electronically - research and advocacy updates, programs and events, and perhaps most importantly of all, an electronic client newsletter. If we don’t have a valid email address on file for you, you are not able to receive this valuable information. Please call your chapter at 1-800-FIGHT-MS or email pae@nmss.org today to be added to our electronic distribution lists.
PHILADELPHIA OFFICE
NEWARK OFFICE
National Multiple Sclerosis Society 30 South 17th Street, Suite 800 Philadelphia, PA 19103 215-271-1500
National Multiple Sclerosis Society 200 Continental Drive, Suite 115 Newark, DE 19713 302-655-5610
Š2016 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 kevin.moffitt@nmss.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.
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PRESIDENT’S MESSAGE
MAKING WELLNESS A PRIORITY In January, I accepted the position of Greater Delaware Valley president. I am thrilled to take on this new role and look forward to working with all of you in this capacity.
KEVIN MOFFITT, PRESIDENT When I began my tenure with the National MS Society in 2005, there were only five disease-modifying therapies for MS. Now, there are 13. We’ve come so far, and it is important that we continue to accelerate the pace of MS research while providing the support necessary for local people affected by MS to live their best lives. As president, I am committed to our shared vision of a world free of MS, and helping people living with MS move their lives forward. The Society has an incredibly strong history in our area, and I’m honored to be in a position to build on that foundation. In this issue of MSConnection, you will read stories about some incredible local people living with MS. One, who rides in Bike MS, and another who walks 26.2 miles over two days in Challenge Walk MS. In addition to
being essential to general health and wellbeing, exercise is helpful in managing many MS symptoms. The first study to demonstrate the benefits of exercise for people with MS was published 20 years ago. Additional studies have confirmed the benefits of exercise, including improvement in cognitive function and mood enhancement. While an exercise program is not for everyone, it can be an important part of managing MS. At the Society, we are committed to ensuring everyone living with MS has the information and resources they need to live their best lives. A great deal of progress has been made in the development of therapies that can help slow MS and reduce attacks in many, and substantial research is underway to find better therapies for everyone with MS. Yet there is an unmet need for information on additional ways for people with MS to live their best lives each and every day. For that reason, the National MS Society has made research on and education about wellness and lifestyle factors a priority. Highlighting the benefits of exercise is just one aspect of this initiative, and I hope you find the stories interesting and encouraging. If you have any questions or feedback, I invite you to contact me at Kevin.Moffitt@nmss.org or call 267-765-5103. Sincerely,
Kevin Moffitt, President
04 UPCOMING PROGRAMS Call 1-800-FIGHT-MS or visit calendarMS. org for more information or to register for any of these upcoming programs for people living with MS.
TOGETHER WE ARE STRONGER: A CONFERENCE FOR AFRICAN AMERICANS LIVING WITH MS DOUBLETREE HOTEL • PHILADELPHIA, PA JUNE 11 • 10:00 AM - 3:00 PM Join us for Together We Are Stronger: A Conference for African Americans Living With MS. As a community, we are stronger when we come together to learn more about the disease and support each other. This conference is open to people living with MS and their families and will focus on becoming stronger through positive coping techniques, physical wellness and spirituality. To register, please call 1-800-FIGHT-MS or visit nationalmssociety.org/ AfricanAmericanConference.
EVERYDAY MATTERS
JUNE 14 • 6:30 - 8:00 PM TELELEARNING CALL Put positive psychology to work in your life! Increase your knowledge of the principles of positive psychology and gain an understanding of how these principles can be used as a strategy for living well with MS.
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LuAnn Pierce will lead the teleconference series. She is a licensed clinical social worker who has worked with the National MS Society in different capacities since 2007. LuAnn has worked in the field of human services and mental health for three decades. This teleconference series will consist of six sessions held on consecutive Tuesdays, from 6:30 - 8:00 p.m. each week. Registration is mandatory and registrants are asked to attend all six sessions. Visit calendarMS.org or call 1-800-344-4867 to reserve your spot.
TRAVELING WITH MS
JUNE 14 • 8:00 - 9:15 PM TELELEARNING CALL Author and accessible travel expert Candy Harrington will share tips, resources and hard-to-find information about the logistics of accessible travel planning; while world traveler Lisa Kemppainen will recount her globetrotting escapades in this informative webinar. Topics covered will include air travel, TSA screening, finding accessible lodging and dealing with fatigue and temperature sensitivity on the road. Candy and Lisa will also share some of their favorite accessible travel finds. Visit w w w.nationalMSsociety.org/telelearning or call 1-800-344-4867 to reserve your spot.
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KIDS CAMP
STEVENS, PA • JUNE 16 - 19 Children (ages 7-15) who have a parent or guardian living with MS are invited to a weekend of fun and learning at Refreshing Mountain Camp. Enjoy swimming, hiking, crafts, and high adventure activities. This special weekend offers a great opportunity for kids who have a parent or guardian with MS to connect with one another in a supportive environment. This event is currently at capacity. Please call 302-655-7659 or email Debra.Veenema@ nmss.org to be added to the waitlist.
UNDERSTANDING AND MANAGING YOUR SPASTICITY JULY 12 • 8:00 - 9:15 PM TELELEARNING CALL
While spasticity affects more than 12 million people worldwide – including 80% of MS patients – its causes, effects and treatments are not clearly understood. Our team of MS care experts can answer all of your questions about this complex symptom. Visit w w w.nationalMSsociety.org/telelearning or call 1-800-344-4867 to reserve your spot. n
The National Multiple Sclerosis Society depends on the commitment of volunteers at every level of the organization. As one of the nation’s best volunteer-led health agencies, the Society embraces, values and recognizes the work of our volunteers. We can’t fulfill the promise of our mission without you. Women, men and children of all ages and backgrounds are welcome to participate in our events or lend their professional talents to special projects in our office. The chapter welcomes the diversity that volunteers bring to our vision of creating a world free of MS. Sign up to volunteer now at volunteerforMS.org or contact Mollie Burns at 267-765-5129 or mollie.burns@nmss.org for more information.
06 RESEARCH
NEWS BRIEFS VIRTUAL REALITY SYSTEM IMPROVES BALANCE IN RESEARCH FUNDED BY NATIONAL MS SOCIETY Imbalance is present in many people with MS. Alon Kalron, PhD (Sheba Medical Center, Ramat Gan, Israel) and colleagues were funded with a Pilot Research Award from the Society to study whether a six-week virtual reality program could improve balance and reduce fear of falling in 30 people with MS who had unstable walking. The system consists of a moving platform and projection screen. Compared with a standard exercise program, the team found significant improvements in the group using virtual reality. The system is not widely available, but research is advancing to give people
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with MS better access to such cutting-edge approaches.
MRI STUDY YIELDS CLUES TO THE DEVELOPMENT OF PRIMARY-PROGRESSIVE MS In a study of 453 people described as having radiologically isolated syndrome (specific areas of damage on MRI scans with no accompanying symptoms), about 12% eventually developed primaryprogressive MS. This mirrors the frequency of primaryprogressive MS seen in other studies of people with MS. Those who developed primary-progressive MS were more likely to be men, were significantly older, and were more likely to have MS-like lesions in the spinal cord compared to those who went on to develop clinically isolated syndrome (CIS) or relapsingremitting MS. This study provides a rare glimpse of a very early stage of disease even before progression begins, and provides additional evidence of the value of research into radiologically isolated syndrome. Finding a way to identify and track primary-
progressive MS earlier may help to improve access to care for those who have it.
RESEARCHERS FUNDED IN PART BY NATIONAL MS SOCIETY PINPOINT DIRECT DAMAGE TO NERVE CONNECTIONS IN MICE, INDEPENDENT OF MYELIN DAMAGE Researchers have found evidence that microscopic connectors in the brain called “synapses� are directly damaged during the course of MS-like disease in mice, in an area of the brain linked to cognitive function. The damage appeared to be unrelated to myelin damage, and was linked to a specific molecule called platelet-activating factor receptor. Further research will determine whether treatment that protects synapses in the hippocampus may preserve cognitive function in people with MS. The team is pursuing therapeutic candidates based on these findings.
NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS
STUDY SHOWS THAT PEOPLE WITH MS TAKING NATALIZUMAB DEVELOP ANTIBODIES TO THE JC VIRUS AT HIGHER THAN NORMAL RATES, EMPHASIZING NEED FOR REGULAR MONITORING A study by researchers in Germany and France observed changes in JC virus antibody status in two large groups of people with MS followed for 15 and 24 months. Having a positive
antibody test to the virus means that a person has been exposed to the virus and has a higher risk of PML (a rare brain disease) than a person who has a negative antibody test, but a positive antibody test does not mean that a person has or will get PML. The results emphasize the need for vigilant monitoring of people with MS taking natalizumab, including regular antibody testing, MRI monitoring to improve detection of PML, and clinical monitoring for early signs suggesting the possibility of PML. Decisions to initiate, continue or discontinue natalizumab need to include
07 a conversation about the risk of PML, the risk of worsening MS and the potential adverse effects and the efficacy of alternative therapies. n
VISIT US ONLINE AT NATIONALMSSOCIETY.ORG/ RESEARCH TO STAY ON TOP OF THE LATEST IN MS RESEARCH.
WE ALL DO IT: MULTITASKING. DREXEL UNIVERSITY IS LOOKING FOR PEOPLE TO PARTICIPATE IN A RESEARCH STUDY EXAMINING INDIVIDUALS WITH MULTIPLE SCLEROSIS AND HOW THEIR ABILITY TO MULTITASK IS RELATED TO EMPLOYMENT STATUS. DREXEL IS RECRUITING BOTH INDIVIDUALS WITH AND WITHOUT MULTIPLE SCLEROSIS TO TAKE PART IN THIS STUDY. PARTICIPANTS WILL BE ASKED TO COMPLETE BRIEF PAPER AND PENCIL TASKS, DISCUSS THEIR CURRENT OR PAST EXPERIENCES AT WORK, AND ENGAGE IN A REAL-WORLD MULTITASKING TASK. THE STUDY WILL BE SPLIT INTO TWO SESSIONS LASTING APPROXIMATELY 2 HOURS. IF YOU ARE BETWEEN THE AGES OF 18-60 AND WANT TO TAKE PART IN THIS RESEARCH STUDY, PLEASE CALL OR EMAIL DR. MARIA SCHULTHEIS AT 215-895-6105 OR SCHULTHEIS@DREXEL.EDU. PARTICIPANTS WILL BE COMPENSATED FOR THEIR TIME WITH $60.
08 RESEARCH
CAN STEM CELLS BE USED TO TREAT MS? Recent media reports have featured news about a clinical trial involving harvesting a person’s own stem cells to treat aggressive multiple sclerosis. ■■ This
treatment, called autologous haematopoietic stem cell transplant (HSCT), attempts to “reboot” the immune system, which is believed to launch attacks on the brain and spinal cord in people with MS.
■■ HSCT
is under investigation in clinical trials in Canada, the United States, Europe and elsewhere. Clinical trials are needed to fully understand the benefits and risks of HSCT in MS, and who might benefit most from this approach, since it does not seem to be effective in all types of MS.
■■ In
HSCT, stem cells from a person’s own bone marrow or blood are stored, and the rest of the individual’s immune cells are depleted usually by chemotherapy. Then the stored stem cells are reintroduced and over time they produce new cells that repopulate the body with immune cells.
■■ There
is exciting progress being made through innovative research related to the potential of many types of stem cells both for slowing MS disease activity and for repairing damage to the nervous system.
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■■ At
present, there are no approved stem cell therapies for MS. Stem cell therapy is in the experimental stage, and it’s important for people to have the best available information to understand this exciting area of research and make decisions related to this complex issue.
■■ In
November 2015, the International Conference on Cell-Based Therapy for Multiple Sclerosis was convened by the National MS Society and the European Committee for Treatment and Research in Multiple Sclerosis, bringing leading researchers and clinicians together to confer on clinical trials needed to provide answers about which types of cells, which route of delivery, and which types and stages of disease, would be the most promising approach for treating MS. A summary and consensus on next steps will be published by the conference organizers, with recommendations to help speed the development of new cell-based treatment solutions.
■■ With
the urgent need for more effective treatments for MS, particularly for those with more progressive forms of the disease, we believe that the potential of all types of cell therapies must be explored. The Society is currently supporting 12 research projects exploring various types of stem cells, including cells derived from bone marrow, fat and skin, and has supported 68 stem cell studies over the past 10 years. n
NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS
RESEARCH
“BREAKTHROUGH THERAPY DESIGNATION” FOR PRIMARYPROGRESSIVE MS DRUG FEBRUARY 17, 2016 DESIGNATION CAN EXPEDITE REVIEW ONCE SUBMITTED FOR FDA APPROVAL
Genentech, a member of the Roche Group, has announced that the experimental therapy ocrelizumab has been granted “Breakthrough Therapy designation” by the U.S. Food and Drug Administration (FDA) for the treatment of people with primary-progressive MS. This designation means that once Genentech files for approval of ocrelizumab to treat primaryprogressive MS, the review process can be expedited. According to a February 16 press release, Genentech plans to pursue marketing approval for both primary-progressive MS and relapsing multiple sclerosis, and will submit data from three Phase III studies to the FDA in the first half of 2016. “We are encouraged by this news and look forward to following the FDA’s actions regarding ocrelizumab,” says Timothy Coetzee, PhD, Chief Advocacy, Services and Research Officer at the National MS Society. “People with progressive MS need solutions and we are hopeful that this is the first of
09 many treatments that will be developed for this form of MS.” Breakthrough Therapy designation can expedite the development and review of therapies intended to treat a serious condition when clinical evidence indicates that the treatment may demonstrate substantial improvement over available therapy. The designation was granted to ocrelizumab based on Phase III trial results presented at the European Committee for Treatment and Research in MS in 2015. Compared to placebo, ocrelizumab significantly reduced the risk of progression of clinical disability by 24% in 732 people with primary-progressive MS. Ocrelizumab is a monoclonal antibody that binds to a molecule (CD20) on the surface of immune cells called B cells, and depletes them from circulation. B cells have several functions including making antibodies, and they may play a role in immune-system mediated damage to brain and spinal cord tissues in MS. Ocrelizumab is administered by intravenous infusion every 6 months. There currently are no FDA-approved disease-modifying therapies to treat primary progressive MS, which is characterized by steady worsening of neurologic functioning, without any distinct relapses or attacks, or periods of remission. n Visit our website for Frequently Asked Questions Related to “Breakthrough Therapy” Designation of Ocrelizumab to Treat Primary-Progressive MS.
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CONTINUED FROM COVER Bonnie, who lives in a small South Jersey town, had been experiencing symptoms for a while but had a difficult time getting a diagnosis. Two different doctors told her she was imagining all of her symptoms. “They told me it wasn’t MS,” she said. “But luckily my husband believed me.” And so did her gastroenterologist. He recommended she go to a neurologist at the Hospital of the University of Pennsylvania. And that’s where she received her diagnosis of MS. “It was scary not knowing where the future was going to take me,” Bonnie said. “Am I going to end up in a wheelchair?” Her children and grandchildren were terrified. So were her brothers and sisters. They didn’t know how to deal with it at first. Her husband, on the other hand, was almost glad because they finally had a reason for how she was feeling. From her diagnosis in 2002 until 2008, Bonnie and her family dealt with the disease on their own. But all that changed when Bonnie called her local MS Society office and found out about Challenge Walk MS. After she signed up, her sister Karen did the same. Challenge Walk MS is a two-day, 26.2 mile trek that raises money for MS. Three years ago, the Greater Delaware Valley Chapter started traveling down to Maryland’s scenic Chesapeake Bay for the event. The weekend begins on Saturday with a stroll through the historic Eastern Shore. Walkers take in the breathtaking views at each rest stop along the 16 mile route. The day is then capped with a celebration — a candlelight ceremony where
KAREN, AT CHALLENGE WALK MS IN 2015 people share stories and embrace everyone living with MS. On Sunday, walkers travel the last 10 miles through St. Michael’s beautiful downtown and historic sites, finishing to cheering volunteers, family and friends. “I love the camaraderie. The stories are always…” Bonnie paused, and thought about how to explain the experience. “Well, the stories aren’t always uplifting. But they always make you feel. And you’re feeling for other people and caring about what’s happening with them. I think that’s the biggest part.” For Karen, the weekend is mostly about showing support for her older sister. Karen and Bonnie have a friendly, though sometimes heated, fundraising competition. “Bonnie had beat me every year,” Karen said. But in 2014, the night before the event, Karen was actually winning. Then, Bonnie secured a donation at the last minute and pulled ahead of her sister. “After that, I vowed that Bonnie would never beat me again.”
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In 2015, Karen made good on that promise and raised more money than Bonnie for the first time. A lot of that fundraising came from selling pizzas every Wednesday at the Moose Lodge in her home town. Bonnie doesn’t think it will last though. “I’m way ahead of her this year,” she said, confidently. But she added. “She works hard for me, she really does. She’s a good little sister.” Fourteen years after her diagnosis, Bonnie’s MS has stayed mostly in check. Now in her 60’s, Bonnie stays very active. She exercises regularly, walks to keep up her training for Challenge Walk MS, and has even maintained her skiing hobby. On top of it all, Bonnie is a substitute teacher at a local middle school where she usually works three days a week. All of that activity keeps her sharp, and she has no plans to slow down.
BONNIE CELEBRATES AT THE FINISH LINE “I figure if I keep moving,” she said, “I can just keep going.” Bonnie and Karen will be at it again this year at Challenge Walk MS in Easton, Maryland on September 10-11. For more information on Challenge Walk MS and – other fundraising events, go to moveforMS.org. n
SEPTEMBER 10-11, 2016. REGISTER NOW.
12 LIVING WITH MS
Q&A ON EXERCISE AND MS Last October, the National MS Society held its 20th annual Fannie and Charles Penikoff Research Sy m p o s iu m in Chicago, where close to 500 attendees learned the DR. ROBERT MOTL, PHD latest MS research. At the panel discussion, keynote speaker Robert Motl, PhD, an associate professor at the University of Illinois at UrbanaChampaign and director of the Exercise Neuroscience Research Laboratory (ENRL), answered audience questions about his research on exercise and its relationship to managing MS symptoms.
WHAT TYPE OF EXERCISE PROGRAM SHOULD A PERSON NEWLY DIAGNOSED WITH MS FOLLOW? Someone newly diagnosed with MS can start with the Canadian Physical Activity Guidelines for Adults with Multiple Sclerosis (available at www.nationalMSsociety.org/exercise). These
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guidelines indicate that people with MS should do aerobic exercise, along with resistance or muscle strengthening exercise, at least two times per week.
HOW DOES A PERSON WITH MS HANDLE ISSUES WITH EXERCISE AND HEAT SENSITIVITY? By its nature, exercise causes an increase in body temperature. Some ways to reduce the heat load while exercising include wearing light and cool clothing, exercising in an air-conditioned facility or in a facility with fans, exercising in a pool, drinking plenty of water and applying cooling devices such as cooling vests.
IS MS LESS PREVALENT IN PEOPLE WHO ARE FIT AND EXERCISE REGULARLY? There is no evidence that exercise or fitness protects against MS. Exercise or fitness does increase one’s physiological and brain reserve, and this can possibly slow the progression of the disease over time.
WILL THERE SOMEDAY BE AN ORAL OR INJECTABLE THERAPY THAT MIMICS EXERCISE? I am not sure we will ever have a medication that can mimic the system-wide effects of exercise. Exercise activates and changes so many systems through the human body, including the brain, and it is very difficult to imagine a medication that could have similar activation and effects. I would further note that the body was designed for and needs movement in some form, and a medication would take away that basic need of the human body.
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WHAT IS THE KEY TO MAINTAINING MOTIVATION FOR AN EXERCISE PROGRAM FOR SOMEONE WITH MS IN A SCOOTER? There are many exercise options that involve arm and trunk movements that can be done sitting. I would look for exercise options you find personally enjoyable and stimulating, and this might involve exercising with a group or other people.
WHY DOESN’T THE NEUROLOGIST SUGGEST OTHER THERAPIES LIKE EXERCISE? We have learned through our research that people with MS really want advice about exercise from healthcare providers, particularly neurologists. So we are now speaking with providers about the resources and services for meeting peoples’ needs. We hope that we can develop a tool so that providers can effectively counsel people with MS on behavior changes that involve exercise.
AS SOMEONE WHO USED TO EXERCISE, I’M NOW TOO TIRED; HOW DO I GET STARTED AGAIN? Even small steps are worthwhile. For example, try walking for five minutes daily for a week or two, and then slowly bump it up over time. Start slow, listen to your body, and create a routine that cannot be influenced by work and life.
IS WEIGHTLIFTING BENEFICIAL FOR PEOPLE WITH MS? Absolutely. This is essential for maintaining muscle strength and muscle itself. Muscle strength is important for everyday tasks such as walking up stairs, carrying groceries, and even self-care.
PEOPLE WITH MS FATIGUE EASILY. IS IT BETTER TO WALK FAST FOR A SHORT PERIOD OR WALK SLOWER FOR LONGER? This is an intriguing question. I would try both to find the one that leaves you the least fatigued. I cannot provide a definitive answer as no one has done the necessary research. We hope to change that by comparing steady, longterm continuous walking with interval training and examining the benefits.
SHOULD THE APPROACH TO EXERCISE BE DIFFERENT FOR RELAPSING-REMITTING MS VERSUS PROGRESSIVE MS? All people with MS should exercise, regardless of the disease type. I am not aware of any research indicating that one approach for exercise is necessary for progressive MS versus relapsing-remitting MS.
ARE THERE DATA THAT SHOWS A DECREASE IN SYMPTOMS IN LATE PROGRESSION OF MS WHEN EXERCISE TRAINING BEGINS? There are data indicating that exercise reduces fatigue and depression among all people with MS, regardless of disease type, duration or disability.
ARE THERE EFFORTS BEING MADE TO GET NEWLY DIAGNOSED PEOPLE TO BEGIN OR CONTINUE EXERCISE TRAINING TO HELP WITH DISEASE MODIFICATION OR SYMPTOM MANAGEMENT? We are working on it! To learn more about Dr. Motl and the ENRL, visit www.enrl.net. n
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EMPLOYMENT
8 STEPS TO TAKE IF YOU ARE AFRAID OF LOSING YOUR JOB ADAPTED FROM STEPHEN VISCUSI’S BOOK “BULLETPROOF YOUR JOB.”
Are you living in fear that you may lose your job? Maybe you are concerned about your job performance, have a difficult boss, or your company is losing money. Either way, if you’re starting to get an unnerving feeling that your job is on the line, there are things you can do to increase your chances of keeping your job. There are also steps to take to help soften the blow in the unfortunate event you do lose your employment. Here are some steps you can take:
1. Be visible. Improve your physical presence
in the workplace. Be the first one in and last to leave even if it’s just by a few minutes. Sell yourself. Don’t be shy about your accomplishments; make sure that those on top know how valuable you are to the company and to the company’s bottom line. It’s important to be viewed as a competent hard worker.
2. Be easy. During an economic decline, employers will be looking to make cuts wherever they can. Keep a positive attitude and take changes in stride. Be easy to talk to and work with. Difficult employees are usually the first to go.
THERE ARE MORE THAN 40 SELF-HELP GROUPS FOR PEOPLE LIVING WITH MS IN THE GREATER DELAWARE VALLEY. THE GROUPS MEET MONTHLY AND ARE WONDERFUL SOURCES OF FRIENDSHIP, UNDERSTANDING, COMPASSION, AND INFORMATION. THE GROUPS ARE DIVERSE, WELCOMING, AND OPEN TO PEOPLE LIVING WITH MS AS WELL AS THEIR LOVED ONES. IF YOU ARE NOT CURRENTLY A MEMBER OF A GROUP, PLEASE CONSIDER JOINING ONE. TO FIND A GROUP NEAR YOU, VISIT WWW.NATIONALMSSOCIETY.ORG/CHAPTERS/PAE/GROUPS-ANDDISCUSSIONS OR CONTACT CYNTHIA TEHAN AT 267-765-5126 OR CYNTHIA.TEHAN@NMSS.ORG. IF THERE ISN’T A GROUP IN YOUR AREA, PLEASE LET US KNOW.
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NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS 3. Be useful. When times are tough
more than ever employers need employees who will pitch in to do whatever is needed. Have a strong work ethic. If possible look for ways to expand your skills and learn things about other departments. It’s harder to fire someone when they’re valuable to several areas of a business.
4. Have a plan B. Just remember
no one is indispensable, so always be prepared for the possibility of a layoff.
5. If at all possible, save. Money in
the bank means security. If the worst should happen you will feel more confident that you can handle a layoff.
6. Have your resume updated and ready.
7. Know what jobs are out there. Use your professional network and talk to people in your industry. Find out which companies are doing well and make contact with staff there.
8. Consider ways you can use your skills in similar fields.
If you have an employment related question you would like answered, such as workplace disclosure, social security benefits, reasonable accommodations or you are thinking about returning to work and not sure where to start, we can help. Contact Christina L. Forster, MA, CRC at christina.forster@nmss.org or by calling 215-271-1500. Information is also available at www.nationalmssociety.org/ Resources-Support/Employment. n
The Rehabilitation Research and Training Center (RRTC) at Virginia Commonwealth University (VCU) is conducting a study of adults with physical disabilities. They want to know about your barriers to employment as well as resources that you need to support your work / career goals. In addition, they are interested in knowing how you find information on employment services and supports. The target groups for the study are: ■■ Adults
with cerebral palsy, spinal cord injury, multiple sclerosis, or other physical disabilities
■■ Young
adults ages 18 to 24 with any type of physical disability.
To be eligible to participate, you must be between the ages of 18 and 65, a U.S. citizen, be able to provide legal consent, and be a member of one of the targeted groups above. Participants will complete an online survey requiring approximately 20 minutes. One hundred participants will be randomly selected to receive a $25 gift card. However, there is no guarantee that everyone who completes the survey will be selected to receive the gift card. If you are interested in participating, the VCU-RRTC needs your consent. Go to www.vcurrtc.org/surveys/employment_w_ pd/ to read more about the study, review the survey questions, and give your consent.
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KEEP IN TOUCH The In Touch Program provides the opportunity for residents at the Abramson Center for Jewish Life to offer emotional support and companionship by phone to homebound individuals living with MS in the community. Allen Michaelson, whose MS symptoms began in 2000, speaks once a month with a volunteer from the Abramson Center who is also living with MS. “She knows what she’s talking about… experience is the best teacher. And when you’re going through some stuff, and you’re
dependent, every little bit of information helps. When you talk to someone who has something similar to you, and who is willing to share their information, that’s a great resource. She’s been a great help to me.”
“WHEN YOU TALK TO SOMEONE WHO HAS SOMETHING SIMILAR TO YOU, AND WHO IS WILLING TO SHARE THEIR INFORMATION, THAT’S A GREAT RESOURCE.” If you would like to sign up to receive phone calls, contact Melissa Bruno, Director of Client Services, at 215-271-1500 or melissa. bruno@nmss.org. n
GADGET CORNER
LIFTWARE Liftware is a stabilizing handle and a selection of attachments that include a soup spoon, everyday spoon, and fork. Liftware is designed to help people with mild to moderate hand tremor eat more easily. It may be useful for someone living with MS who has trouble holding, eating and transferring objects. You can find the starter kit at www.liftware.com and other online retailers. The starter kit includes the stabilizing handle and a soup spoon attachment. Additional attachments are sold separately.
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ADVENTURE FUND RECIPIENT ENJOYS HOLIDAY TRAIN RIDE The Arthur Stapler Memorial Adventure Fund helps individuals with MS and their families enrich their lives with an extraordinary experience. One recent Adventure Fund recipient, Lisa, had a memorable holiday rail excursion with her family. She and her loved ones took a trip aboard the New Hope & Ivyland passenger train, which travels through Bucks County, Pennsylvania. “This adventure and many memories will forever be cherished by my family,” Lisa says. For more information about the Adventure Fund, please visit www.nationalMSsociety. org/ArthurStapler. n
LISA AND HER FAMILY MADE LASTING MEMORIES ABOARD A HOLIDAY TRAIN RIDE THANKS TO THE ARTHUR STAPLER MEMORIAL ADVENTURE FUND
BIKE TO THE BAY SEPT. 10 & 11 CITY TO SHORE SEPT. 24 & 25
June 4 & 5
Glen Mills, PA REGISTER TODAY
BIKEMS.ORG
MUCKFESTMS.COM
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ADVOCACY
LOCAL UPDATES FEDERAL PUBLIC POLICY CONFERENCE Every year, hundreds of MS Activists and Society staff from across the country travel to Washington, DC to attend the Society’s annual Public Policy Conference (PPC). The conference took place from March 14-16, 2016. This year, we recognized 25 years of MS activists’ collective impact, and the changes we have driven together. The Greater Delaware Valley Chapter brought several dedicated volunteer activists to join the advocacy staff at PPC. During the conference, activists learned about our policy priorities and how to craft their stories. On the last day, activists headed to Capitol Hill to meet with members of their state’s congressional delegation to discuss the Society’s policy priorities.
To learn more about our advocacy efforts or how you can help, please visit www. nationalMSsociety.org/Chapters/ PAE/Advocate-for-Change or contact takeaction@nmss.org or 215-271-1500. During Capitol Hill visits, MS activists urged Congress to support: ■■ The
Advancing Research for Neurological Diseases Act
■■ Funding
for MS Research through the Congressionally Directed Medical Research Program (CDMRP) and the National Institutes of Health (NIH)
■■ Affordable
access to MS medications
To keep up to date on our federal advocacy efforts please visit: www.nationalmssociety. org/Get-Involved/Advocate-for-Change.
Each of us has a story that can drive change. MS activists and the National MS Society are currently working on a home modification tax credit in DE, NJ and PA. If you have experienced difficulties paying for a modification to make your home more accessible, your story can help us explain to lawmakers why a home modification tax credit is important. If you have made a home modification and would like to share what that meant to you and your family, we would love to hear from you too! Please send us your stories at: takeaction@nmss.org.
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STATE NEW JERSEY The New Jersey state legislative session began in mid-January. Our staff and activists are already hard at work advocating for policies that benefit people with MS and their families. This year, we are focusing our advocacy efforts on increasing health care transparency by creating a more transparent healthcare system that gives people the information they need to make informed decisions. In addition, we are working on creating an accessible home modification tax credit. Home modification tax credits are designed to allow an individual homeowner or a family to be able to recoup some of the costs of modifying a home. To learn more about our advocacy efforts in New Jersey or to become involved, please contact Mara Brough at (267) 765-5104 or mara.brough@nmss.org.
PENNSYLVANIA Our staff and activists are working on many of the same issues as in New Jersey. We are advocating for increased health care transparency and protection from surprise out of network medical bills. We are also working on creating an accessible home modification tax credit in Pennsylvania. Finally, we are working on prior authorization reform legislation. Prior authorization or pre-approval requirements mean that specific criteria must be met before a drug or service will be covered by a health plan. We are working on legislation to streamline and simplify this process in Pennsylvania. This legislation will ensure that people with MS
can access critical health services in a timely manner. To learn more about our advocacy efforts in Pennsylvania or to become involved, please contact Mara Brough at (267) 765-5104 or mara.brough@nmss.org.
DELAWARE In Delaware we have had the first meetings with State Legislators to discuss the introduction of a Home Modification Tax Credit bill during this legislative session. The goal is to have a bill introduced before the end of the session on June 30, 2016. Over the next few months, we will be working on creating a coalition of other community service providers who have an interest in this legislation. Support has already been given from a few State councils and committees and once the legislation has been drafted, more will be asked to send a letter of support to State legislators. Additionally, we are following HB 200 regarding accessible parking. This has been an issue in the State for many years and is the first step toward correcting inaccessible parking issues. We are also closely monitoring the activities of the Delaware Health Care Commission. This group was originally formed to oversee the implementation of the Affordable Care Act. They now focus on monitoring health care in the state with an eye toward transparency, network adequacy, and accessibility. To learn more about our advocacy efforts in Delaware or to become involved, please contact Debra Veenema at (302) 655-7659 or by email at debra.veenema@nmss.org. n
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MS CONNECTION: 2016 ISSUE 2
I RIDE WITH MS: SALLY There was something wrong with her eyes. It was January 2003, and Sally had just gotten new contact lenses. She hoped it wasn’t anything more than a problem with her contacts, but she went to the doctor anyway. They told her she had optic neuritis. They even brought up MS. But then the issue went away, and she pushed it to the back of her mind. A little less than a year later, her eye problems returned. She went back to the doctor, and this time they confirmed it; Sally was diagnosed with MS.
SALLY, ON THE BRIDGE AT BIKE MS: BIKE TO THE BAY IN 2015
“My close family and friends knew but I didn’t make it public at work,” she said. “I didn’t want anyone to look at me differently, or treat me differently, or think I was less competent or capable from a physical perspective.”
doing Bike MS: City to Shore. He rode in City to Shore in 2013, while Sally volunteered. Stationed at a rest stop helping people, she was determined to ride the following year.
For the next three years, Sally kept her diagnosis private. It wasn’t until recently that she started to be more open.
“THE DISEASE IS LIKE PERFUME. IT SMELLS DIFFERENT ON EVERYBODY.”
“The disease is like perfume. It smells different on everybody,” Sally said. “So everybody’s experience with the disease is going to be different. And I wanted to let people know that I have it, and I’m living with it. I’m living well with it. I ride Bike MS.” Sally got involved with Bike MS three years ago. She was always a cyclist, but never serious about it. Then her partner, Keith, brought up
“My goal the first year in 2014 was just to make it,” Sally said. “In 2015 [at Bike to the Bay], my goal was to keep up with the group of riders I was with. I did well the first day, and I was so proud of myself. Day two was a different story. The wind was awful, and I fell off from the group a bit. But Keith — my partner — actually came for me, put his hand
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She tells them, “I get to take this drug which is a better treatment for my disease. And it’s because of the contributions from people like you.” Sally believes that cycling is an important addition to her MS treatment. It’s a great way to exercise, and the impact on her body is minimal.
SALLY WITH HER TEAM FROM AIR PRODUCTS AND CHEMICALS on my back and literally pushed me back up with our group. That was a rough day but the stronger guys did a great job leading us to the finish line. We really had a great group and awesome team camaraderie.” Sally, in a big turnaround from her earlier years of living with MS, rides on a team with her co-workers at Air Products and Chemicals, Inc. When she sends out emails telling people she’s riding again, she gives them a heartfelt thank you. Sally recently switched medications and went from giving herself a shot three times a week to taking an oral medication.
“I think it’s important for me as someone who has the ability to ride and has the disease to get out there and help support the cause,” Sally said. She added, “[I want] to help others as much as possible, because I could be in their shoes one day.” Overall, Sally is very hopeful for the future. When she looks at the progress that’s been made since she was diagnosed, she can’t even imagine all the advances the future holds. “Right now, I can say that I’m one of the fortunate people that are fairly nonsymptomatic,” Sally said, as she gave her desk a knock for good measure. “Don’t feel sorry for me because I have MS. Look at all I can do — and oh, by the way — it’s just one of the things that is a part of who I am. n
Anyone living with MS who is interested in cycling to support the MS movement can join the program, enjoy special day-of-event benefits and receive a complimentary “I Ride with MS” jersey. Genzyme and MS One to One, and Primal Wear are proud supporters of the I Ride with MS program, available through all 100 Bike MS events nationwide. I Ride with MS participants are not only committed to cycling to create a world free of MS, but to increasing awareness. FOR MORE INFORMATION OR TO REGISTER FOR THE PROGRAM, VISIT BIKEMS.ORG AND CLICK ON “I RIDE WITH MS.”
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MS CONNECTION: 2016 ISSUE 2
FACE OF MS: SHAY SHAY IS A PHYSICAL THERAPIST LIVING WITH MS. SINCE BEING DIAGNOSED THREE YEARS AGO, SHE HAS GOTTEN INVOLVED WITH THE NATIONAL MS SOCIETY THROUGH MUCKFEST MS. SHE TALKS ABOUT THE WAYS HER LIFE HAS CHANGED SINCE BEING DIAGNOSED WITH MS, AND HOW SHE NOW FEELS MORE POSITIVE ABOUT LIFE IN GENERAL. WHEN WERE YOU DIAGNOSED WITH MS? January 2013
WHAT SYMPTOMS WERE YOU FEELING? Optic neuritis. And I had tingling and numbness in both of my legs. I had optic neuritis two years before I was diagnosed, and they did all the tests and it came back negative. Actually, they diagnosed me with clinically isolated syndrome, which now if you get that diagnosis they put you on meds right away. But at the time they weren’t doing that. I’d been having the numbness in my legs for a couple months when I would run. But then it would go away. But then the optic neuritis came back
SHAY, DIAGNOSED 2013 THREE YEARS AFTER YOUR DIAGNOSIS, WHAT SYMPTOMS ARE YOU HAVING? The only major symptoms I’ve had have been optic neuritis. I’ve had it three times in my left eye and two times in my right eye. And then fatigue. But it’s mainly been my vision that’s the issue.
HOW HAS MS AFFECTED YOU? It’s definitely made me pay more attention to my body. I’m a physical therapist, so when I was experiencing those symptoms, I knew right away that something was not right. So as much as I already did pay attention to my body, I really had to look at my diet and how much energy I’m expending – what is too much and how to say no to people.
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I guess at first it was just really negative. It’s taken a while, but I have to be positive about it. So I work out as much as I can. I eat the things that I think I’m supposed to eat. It’s just made me a little more positive about life.
It just was this super positive experience that I wasn’t expecting. Now, knowing the Society and being an ally with them and being an advocate for the disease has just made me feel more positive about the diagnosis as a whole.
IN WHAT WAY HAS IT MADE YOU FEEL POSITIVE?
HAVE YOU RECEIVED ANY SERVICES FROM THE SOCIETY?
It’s just made me appreciate the time that I have with everybody. I worry about my vision and I worry about if I’m going to end up in a wheelchair. Is the medication I’m on working? I recently switched from Copaxone to Aubagio, which has been smooth, knock on wood. But it’s stressful and not knowing what’s going to happen is the worst part. But if you focus on that it’s so easy to stay in a negative mental attitude. So I try and be positive and enjoy every day and the things I’m able to do know.
WHEN DID YOU CONNECT WITH THE MS SOCIETY? Pretty much right after my diagnosis. My mom found out about MuckFest MS. She was having a really hard time, and she was like, “We can do this. We can raise money. Let’s go all out.” And I was not having it. I didn’t want to tell anybody about the diagnosis. And then I let my mom take over and we had a team of 20 some people and raised $12,000 that first year at MuckFest. It was literally six months after I’d been diagnosed. And everybody came together and there was so much support.
As a healthcare professional, I wanted to work more with patients with MS. I had worked with a couple after my diagnosis. So I took the Multiple Sclerosis Certified Specialist exam in August and I passed. And I applied for the Know MS Scholarship through the Society to help pay for it.
WHY DID YOU DECIDE TO START A BLOG? I feel like opening up and telling your story is the only way you’re going to connect to people. That’s why I started the blog (mystubbornlove.com), because it’s a very lonely disease. So if you can talk to anyone about it and reach out, then maybe other people won’t feel so alone. n
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
OFF MY WAVE. TOGETHER WE ARE STRONGER
Ocean Beach native and local surf legend Steve Bettis was diagnosed with MS in 2006. Although surfing is still central to his life, he hasn’t been able to get out on the water in 10 years. For a man whose daily routine always included a few waves, more than a decade out of the surf is just too long. This is why the National MS Society teamed up with his buddy Robert “Wingnut” Weaver and used virtual reality to get Steve back on his wave. See their experience and find out how you can share yours at WeAreStrongerThanMS.org.