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2016 ISSUE 4 DELAWARE, SOUTHEASTERN PENNSYLVANIA & SOUTH JERSEY

MSCONNECTION NEWSLETTER

YOGA AND MS Downward dog, pigeon, cobra—no, we’re not talking about animals—we’re talking about yoga. The practice of yoga has existed for thousands of years, but has recently surged in popularity. Practitioners of yoga combine a series of poses and breathing exercises, with the intention of bringing peace to the body, mind and spirit.

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INSIDE 10 16 THIS ISSUE THREE WAYS TO MAKE A DIFFERENCE

SPRING AND SUMMER EVENTS RECAP

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UNDERSTANDING YOUR OPTIONS WHEN YOU NEED CARE

A NEW SENSE OF FREEDOM

FACE OF MS: DAN DIGGIN


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MS CONNECTION: 2016 ISSUE 4

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 1-800-344-4867 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

ACCESS TO CARE

“I can’t afford my medication” is something we hear all too often. When Abigail Bostwick was diagnosed with MS in 2013, she worried about KEVIN MOFFITT, PRESIDENT what would happen physically, but didn’t understand how soon the disease would hit her financially. Savings were drained and she was forced to start living paycheck to paycheck. People living with MS face many challenges, but rapidly escalating medication prices, increasing out-of-pocket costs, confusing and inconsistent formularies (lists of medications covered by an insurance plan), and complex approval processes are standing in the way of people getting the treatments they need. Frequently, people delay starting medications or changing medications because of the cost. These delays can result in new MS activity, and may bring stress and anxiety to people already dealing with the complex challenges of MS.

In 2004, the average annual cost for MS medications was $16,000; today it is $78,000 — that’s an increase of nearly 400 percent. It’s time for this to change. That’s why the MS Society is launching “Make MS Medications Accessible,” an initiative calling on leadership from all parties involved — pharmaceutical companies, insurance providers, pharmacy benefit managers, specialty pharmacies, healthcare providers, policy makers, people with MS and others — to work together to focus on getting people with MS the medications they need to live their best lives. At the Society, we are encouraging everyone in the MS community to get involved by asking their representatives in public office to support access to medications. Together, we can find solutions and move towards a world where everyone can afford the care they need. Please feel free to email me with any questions or ideas at Kevin.Moffitt@ nmss.org or call 267-765-5103. Sincerely,

Kevin Moffitt, President


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MS CONNECTION: 2016 ISSUE 4

UPCOMING PROGRAMS Knowledge is truly empowering. The National MS Society offers a variety of programs, services, resources and connection opportunities for people living with and affected by MS, including family members, caregivers and other members of their support systems. Call 1-800-344-4867 or visit calendarMS.org for more information or to register for any of these upcoming programs for people living with MS.

SLEEP AND MS: STRATEGIES FOR IMPROVING YOUR ZZZ'S DECEMBER 13 • 8:00 - 9:15 PM TELELEARNING CALL

Sleep disturbance is a common and often troubling symptom among individuals with multiple sclerosis. Whether it’s getting too little sleep, sleeping too much, or having poor sleep quality, problems with sleep significantly impact quality of life for people with MS and their loved ones. Please join clinical psychologist Abbey J. Hughes, PhD and nurse practitioner Stephanie Buxhoeveden, MSCN, MSN, FNP-BC as they discuss a variety of approaches for assessing and managing sleep disturbance in MS. They will respond to your questions and concerns while sharing real life examples pertaining to sleep in MS. This webinar will provide a unique opportunity for individuals with MS, as well as their friends, family members, and caregivers, to learn strategies and acquire resources to facilitate improvements in sleep. Visit www. nationalMSsociety.org/telelearning or call 1-800-344-4867 to reserve your spot

MS NEWS AND RESEARCH UPDATE EMBASSY SUITES • NEWARK, DE JANUARY 14 • 11:30 AM - 2:00 PM

Join us for an informative presentation from top neurologist, Dr. Jason Silversteen, on the latest news in MS research. The program will also include a question-and-answer session. Lunch will be served. To register, call 1-800-344-4867 and choose option 1 or visit calendarMS.org. n


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CONTINUED FROM COVER Megan Weigel, co-founder of oMS Yoga, believes yoga can be a beneficial practice for people living with MS to add into their care routine.

Weigel knows that someone’s first yoga class can be a little intimidating, but she’s confident there’s no reason to be nervous.

“Research on yoga and MS is growing, and tells us that yoga may help with fatigue, balance, quality of life, depression/anxiety, bladder issues and pain,” says Weigel, a nurse practitioner and president of the International Organization of MS Nurses. “Our students tell us that yoga has also taught them how to breathe, and has helped them form a supportive community, leaving them feeling less isolated.”

“When you attend an oMS Yoga class at MossRehab, you will enter a room that is filled with others who are there to support you,” says Weigel. “We suggest to yogis that since every day is different, so is every yoga class. And that helps them learn to effectively deal with the unpredictability of living with MS.”

oMS Yoga began in Jacksonville, Florida in 2012. Weigel founded it with Cheryl Russell, a yoga instructor who lives with MS. In 2015, Weigel was connected to MossRehab, a member of the Einstein Healthcare Network, the largest independent medical center in the Philadelphia region. With MossRehab’s guidance, oMS Yoga applied for a grant from The Albert Einstein Society to start free oMS Yoga classes at MossRehab. In April, they were notified that they would be receiving funding to bring yoga classes to MossRehab’s Elkins Park, PA and Doylestown, PA locations. Sherri Bittner, an accomplished yoga instructor whose husband lives with MS, will be teaching the classes that started in October. “MossRehab has a well-known MS program that includes sophisticated rehabilitation therapies, support groups, and physical maintenance programs,” says Weigel. “Our mission and theirs fit nicely together, and we are grateful for their collaboration on this project.”

“WE SUGGEST TO YOGIS THAT SINCE EVERY DAY IS DIFFERENT, SO IS EVERY YOGA CLASS. AND THAT HELPS THEM LEARN TO EFFECTIVELY DEAL WITH THE UNPREDICTABILITY OF LIVING WITH MS.” Yoga classes will be gentle, yet challenging, 60 minutes in length and include a guided meditation. The classes are designed to awaken potential, empower confidence and inspire possibility in people living with MS. Weigel stresses that the yoga classes are for everybody, and encourages people of all levels of ability to attend, including those using assistive devices like wheelchairs. If you use an assistive device, you must be able to independently transfer; if not, oMS Yoga asks that you bring a care partner to class. To learn more, visit omsyoga.org or call (267) 614-4291. n


06 RESEARCH

NEWS BRIEFS PLANT-BASED, LOW FAT DIET IMPROVES FATIGUE IN SMALL CLINICAL TRIAL In a small clinical trial involving 61 people with MS, researchers at Oregon Health & Science University tested a plant-based, lowfat, meat-free diet compared with an untreated control group. Fatigue scores improved significantly, but no significant impacts were seen in MRI scans, disability, or mobility. Participants were able to stick to the diet, and were able to lose weight and reduce cholesterol levels. Although larger studies are needed, these results help to fine-tune our understanding of how managing diet may help people with MS.

MS CONNECTION: 2016 ISSUE 4

NEW STUDY PROVIDES MORE EVIDENCE THAT OBESITY INCREASES RISK FOR DEVELOPING MS An increase in body mass from being “overweight” to “obese” was associated with a significant increase in the risk of developing MS, reports a new Canadian study. Researchers identified 70 genetic predictors of weight (body mass index) by analyzing obesityrelated genes from a study of more than 300,000 people. Then, they looked at these gene variations in data compiled from more than 14,000 people with MS and 24,000 people without MS as part of the National MS Societylaunched International MS Genetics Consortium. This study adds to the growing body of evidence that obesity is a risk factor for developing MS. Being overweight is also known to worsen MS symptoms.

RESEARCHERS “TURN OFF” MS-LIKE IMMUNE ATTACKS IN MICE A team from the University of Maryland reported on a novel strategy for stopping the immune attack in MS in the future, without suppressing the entire immune system. In lab studies, the team injected designed particles that delivered regulatory immune signals directly into lymph nodes – the tissues that control immune function. A single dose, delivered at the peak of MSlike disease in mice, was able to reverse symptoms, and appeared to affect only the immune functions involved with the disease. “This innovative research has the potential to open up a new, highly selective approach to treating multiple sclerosis,” said Bruce F. Bebo, Ph.D., Executive Vice President of Research at the National Multiple Sclerosis Society.


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POSITIVE RESULTS ANNOUNCED FROM CLINICAL TRIAL OF BAF312 (SIPONIMOD) IN SECONDARY PROGRESSIVE MS Results presented at the 32nd Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) provided additional details from a 60-month, phase III clinical trial of the experimental oral therapy siponimod (BAF312, Novartis Pharmaceuticals AG) involving 1,651 people with secondary progressive MS. The trial met its primary endpoint of reducing the risk of disability progression compared with inactive placebo. Those on active treatment had a 21% reduced risk of disability progression compared to those on placebo. Secondary endpoints suggested that those on active therapy had 23.4% lower average

change in brain volume and reduced lesion volume. The therapy was generally well tolerated and similar to adverse events reported for similar compounds.

RESEARCHERS “TATTOO” ANTIOXIDANTS UNDER THE SKIN AS A NEW APPROACH TO STOPPING IMMUNE ATTACKS IN RATS WITH MS-LIKE DISEASE A team at Baylor College of Medicine in Houston has shown that injecting tiny antioxidant particles under the skin of lab rats with MS-like disease succeeded in dampening the immune attack against the brain and spinal cord. The particles were taken up specifically by T cells, major players in the immune attack in MS, and they inhibited T cell function. These particles could be used to selectively

07 target T cells, while leaving the rest of the immune system intact. The study was partly funded by a pilot research award to Christine Beeton, PhD, from the National MS Society. Further research is needed to determine whether this would be safe and beneficial approach for stopping immune activity in people with MS. n

WE ARE AT A PIVOTAL MOMENT IN TIME WHERE SIGNIFICANT PROGRESS IS BEING MADE AND BREAKTHROUGH SOLUTIONS CAN CHANGE THE WORLD FOR EVERYONE WITH MS. VISIT US ONLINE AT NATIONALMSSOCIETY.ORG/ RESEARCH TO STAY ON TOP OF THE LATEST IN MS RESEARCH.


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MS CONNECTION: 2016 ISSUE 4

GIVING THANKS WITH THE MS SOCIETY In 2015, Kevin Brown was the last one to cross the finish line at the Thanksgiving Day MS Run in Wilmington, Delaware. But for Kevin, just crossing the finish line was something to be proud of. “Mom, dad, and I were the last three to finish, which was fine with us,” said Kevin, who was diagnosed with MS in 2012. “I really just wanted to see how far I could go.” Kevin came to the event prepared. He had a transport chair that allowed him to push himself. He made it a little over a mile on his own, and when his legs got tired, he flipped the chair around and his family pushed him the rest of the way. “All of this, everything I have, my balance issues, my walking issues, my numbness and tingling in my hands and feet, it’s all because of MS,” said Kevin. “There’s not a cure yet, but we’re definitely hoping for one.” That hope is what led him to his decision to fundraise for the event. Kevin, who is active on social media, used that to his advantage and secured most of his donations online. He also asked at his church and received a lot of support there. The event being on Thanksgiving morning also appealed to him. Kevin explained, “Usually we just

KEVIN BROWN WITH HIS TEAM OF SUPPORT AT THE 2015 THANKSGIVING DAY MS RUN sit around and watch television on Thanksgiving, and this was a much more fun thing for us to do.” Kevin and his team had so much fun in 2015 that they all decided to come back for the event again, being held on Thanksgiving morning, November 24. “The number one reason to come out is to support those affected by the disease, but it’s also just a good time,” said Kevin. “If you’re not interested in the running part, it’s a time to walk around with your family and friends. You can catch up with each other, listen, laugh, and enjoy each other’s company.”

“USUALLY WE JUST SIT AROUND AND WATCH TELEVISION ON THANKSGIVING, AND THIS WAS A MUCH MORE FUN THING FOR US TO DO.” Kevin will be joined on November 24 with thousands of runners, walkers and volunteers committed to creating a world free of MS, and having fun at the same time.


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TWO NEW SELF HELP GROUPS There are more than 40 self-help groups for people living with MS in the Greater Delaware Valley. The groups meet at various times and locations 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.

FAMILY & FRIENDS OF PEOPLE LIVING WITH MS

To find a group near you, visit www.nationalmssociety.org/PAEGroups or contact Cynthia Tehan at 215-271-1500 or cynthia.tehan@nmss.org. If there isn’t a group in your area, please let us know.

Meets every 3rd Saturday of the month 1:00 – 3:00 PM at: Ocean City Library, Room #4 1735 Simpson Avenue Ocean City, NJ 08226

Meets every 4th Wednesday of the month 11:00 AM – 12:30 PM at: Beneficial Bank, Small Conference Room 1901 Route 70 E Cherry Hill, NJ 08003

OCEAN CITY MS CONNECTIONS GROUP


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MS CONNECTION: 2016 ISSUE 4

Ways To Make A Difference If you're looking to make new connections and have an impact on someone's life, we encourage you to sign up for our chapter's emotional support programs:

• FRIENDLY VISITING PROGRAM: Residents of long-term care facilities can request a volunteer visit. This program offers the opportunity to make new friends and stay connected with your community.

• INTOUCH PROGRAM: Volunteers who live in long-term care facilities make phone calls to people living with MS who self-identify as "homebound." This program offers companionship, socialization and emotional support.

• PEER MENTOR PROGRAM: People living with MS are matched with mentors based on location and specified preferences, such as gender. Mentors are screened, interviewed and trained to provide emotional support. Peers are encouraged to meet in person. We need volunteers. Are you compassionate, a good listener, and someone who wants to make a difference in the life of someone living with MS? We are looking for volunteers for all three emotional support programs. If you or someone you know would find these programs beneficial, or for more information about volunteering, contact Alessandra DiCicco at alessandra.dicicco@nmss.org or 215-271-1500 (ext. 24124).


NATIONALMSSOCIETY.ORG | 1-800-344-4867

VOLUNTEER SPOTLIGHT: TERRY FRESCONI Volunteers like Terry Fresconi make Bike MS: Bike to the Bay possible. Terry got involved with the MS Society shortly after her diagnosis in 2001. She and her family sponsor the Plantations Margaritaville Rest Stop. They decorate the rest stop with tropical pictures and dress in Hawaiian like attire. Each rider that comes through is given a lei and offered food, drinks, and whole lot of gratitude. “It’s all about making the experience for every rider that comes in just so prolific,” says Terry, “that they feel good about what they’ve done riding all day long.” Terry says she is constantly inspired by everyone who volunteers. For her and her family, it’s the event of the year. “When we see the riders coming, the whole rest stop starts screaming and yelling and clapping,” says Terry. “For one rider or twenty, it doesn’t matter – you get noise from us and a lot of it.”

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IN PRAISE OF CAREGIVERS BY JOE SALACKI

My wife, Becky, and I will celebrate 23 years of marriage this month. We will reminisce through memories of our steamy romance and the early years of our relationship. We will not celebrate that numbness in my right hand that has been there a long time, nor the tight feeling around my torso that started in the late 1990s, nor the fact that I stumble a lot. I saw the first doctor in the spring of 2000. Not quite two years later, in 2002, I was diagnosed with multiple sclerosis. I suspected that I had the progressive type, and that suspicion was confirmed. This is not relapsing-remitting MS. There is no treatment. I’m not getting better. In fact, I will get worse as time goes on. I told Becky to go have a life but she wouldn’t hear of it. I know she was hurting then and I know it hurts her to see me struggle now, but she is strong. When I got my first assistive device, the mobility was liberating but my confidence and self-image were really affected. Her strength helped me through that first trip. She opened the doors and cleared the obstacles as she still does for me today.

MS CONNECTION: 2016 ISSUE 4

An accessible home, a specially equipped van, a custom computer work station at home, a shower chair and a ceiling track system have become part of our daily lives. We live in a retirement community that provides endless opportunity to positively impact the lives of 100 or so seniors. I know all of our neighbors by name. I feel safe and secure here, and I know that is a load off of Becky’s mind. Becky works downtown; her commute is around 75 miles round-trip. We get up together at 5 a.m. because I need her help showering and dressing. We spend a few minutes together before she hits the morning rush at 7 or 7:30 a.m. She goes to work in the busy, high-stress corporate world and comes home 11 hours later. Then it’s time to fix dinner. She can’t even eat in peace because she has to feed me. If we’re lucky, we get a few moments of downtime before it all starts over again the next day. The weekends are busy too because there’s always something to do. We do what we have to do, and we hope there’s time left over to relax and enjoy some fun together. We enjoy music, good friends and good restaurants as often as we can. And we both love the St. Louis Cardinals baseball team. We don’t miss a game on TV — unless we are there in person for 10 to 15 games each year, thanks to Becky’s connections. And she fundraises! Becky has raised more than $100,000 for the Gateway Area Challenge Walk MS® and has walked 500 miles in 10 consecutive events.


NATIONALMSSOCIETY.ORG | 1-800-344-4867

13 spring. She could have buried herself in her work in the tropical paradise, but that’s not my wife. Instead, she talked me into going. Imagine the challenges of getting me to Hawaii! Well, she did it. Not only did she run the conference flawlessly, she made sure that I had an incredible experience as well.

“IF YOU HAVE A CAREGIVER, BE SURE TO THANK THEM AND TELL THEM — OFTEN — HOW MUCH THEY MEAN TO YOU.” JOE SALACKI WITH HIS WIFE AND CAREGIVER, BECKY I know she gets tired. I can see it in her face and hear it in her voice. It breaks my heart. It takes a special person to care for someone with MS. I am needy. I hate it. But Becky never, never, never makes me feel like a burden. She cares for me like no one else could. Sometimes I feel guilty. I wonder if I could do the same things for her if the situation was reversed. Becky is so dedicated and so tirelessly giving. Caregivers are special people, and Becky is a special caregiver.

BECKY IS SO DEDICATED AND SO TIRELESSLY GIVING. Just one last thought. Becky was in charge of a big corporate conference in Hawaii this

I can’t imagine life without my Becky. I tell her so all the time. If you have a caregiver, be sure to thank them and tell them — often — how much they mean to you. Not just this month, but as often as you can. n

NOVEMBER IS NATIONAL CAREGIVERS MONTH While caregivers, also known as care partners, play a valuable role in the lives of people with MS every day, now is a great time to tell them how much you appreciate them. For more ideas on how to celebrate the caregiver in your life, visit nationalMSsociety.org/carepartners.


14 EMPLOYMENT

TALKING TO YOUR EMPLOYER ABOUT MS Disclosure in the workplace is a common concern for people with MS. It is a difficult, very personal and emotional decision that requires significant thought and knowledge. Every person has a different experience, so you will need to carefully consider the pros and cons for disclosing or not for your unique situation. Disclosing has legal and jobrelated implications that can be ongoing. Although there may be good reasons to disclose medical information and very specific benefits to doing so, any decision you make today has immediate and longterm implications for your employment that need to be considered. Keep in mind that once information is given, it can never be taken back, so it’s important to make certain that telling does benefit you. Whatever your decision, know your rights under the Americans with Disabilities Act (ADA) and the Family and Medical Leave Act (FMLA) as well as your local human rights laws. Familiarize yourself with your

MS CONNECTION: 2016 ISSUE 4

company’s time and leave policies as well as short - or long-term disability plan requirements. There are several key issues to consider: who at work needs to know, when does your employer need to know, why would your employer need to know, and what do they need to know? Disclosing to your employer is something that might need to be revisited throughout your career, whether with the same employer or a new one. Planning ahead and educating yourself are essential and can help protect you should you decide to disclose. The only legal reason you would need to disclose is if you are requesting an accommodation in order to do the essential functions of your job. The ADA is the primary law that deals with disclosure and says that in order to request accommodations, a person must disclose. The accommodation can be requested during the interview process or over the course of your employment. Some of the practical or emotional reasons for disclosure include reducing stress, being able to more freely examine insurance and benefits, and simply making you feel more comfortable in case there is a change in your symptoms in the future. It is also important to be proactive and not delay until you have a poor performance evaluation. Once it has gotten to that point, it may be too late.


NATIONALMSSOCIETY.ORG | 1-800-344-4867

THE ONLY LEGAL REASON YOU WOULD NEED TO DISCLOSE IS IF YOU ARE REQUESTING AN ACCOMMODATION IN ORDER TO DO THE ESSENTIAL FUNCTIONS OF YOUR JOB. Be sure to consider both the legal and practical sides of disclosure, the advantages and disadvantages of disclosure, and explore how to disclose to your employer. Some general suggestions include:

• KEEP IT BRIEF, CONCISE, AND NEARLY DEVOID OF TECHNICAL MEDICAL TERMS, AND END WITH HOW YOU MANAGE YOUR SYMPTOMS SO YOU ARE ABLE TO GET YOUR JOB DONE. • S HOW HOW THE DISABILITY IS JUST ONE ASPECT OF YOUR LIFE. • ASSUME THE EMPLOYER EITHER KNOWS NOTHING ABOUT YOUR DISABILITY OR PERHAPS HAS MISCONCEPTIONS. A LARGE PART OF DISCLOSING IS EDUCATING YOUR EMPLOYER. • W RITE YOUR DISCLOSURE SCRIPT AND PRACTICE IT ON FRIENDS AND FAMILY.

15 There are several resources available to help you navigate this important decision. These resources include the Job Accommodation Network ( JAN), a free service of the U.S. Department of Labor Office of Disability Employment Policy and can be reached at w w w.askjan.org or by calling 800-526-7234. If you would like to discuss your decision with someone at the National MS Society, find out about local employment resources, or be referred to an employment law attorney call 1-800-344-4867 to speak with an MS Navigator. Or feel free to pose your questions directly to this email address: EmploymentQuestions@nmss. org, and an Employment Specialist will respond within 48 hours. Whatever you decide, don’t do it alone. Being informed and planning ahead will put you in the best position for a successful disclosure. Remember that no two situations are the same, and you want to be the one in control. n


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MS CONNECTION: 2016 ISSUE 4

SPRING AND SUMMER EVENTS RECAP WALK MS

APRIL-JUNE, 2016 Our 20 Walk MS events took place from April through June this year. While some locations experienced beautiful weather, others had rain, fog, freezing temperatures, and even snow! Even with the mixed weather conditions, we’re on track to raise just under $2 million.

PREAKNESS AT THE PIAZZA MAY 21, 2016

The rain was no match for nearly 1,000 people who came together to watch the Preakness Stakes, dance the night away, and raise over $130,000 – the most in the event’s history – for people living with MS.


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MUCKFEST MS

JUNE 4 AND 5, 2016 Things got really muddy this year at MuckFest MS, and we wouldn’t have it any other way! Over 7,000 people gathered in Glen Mills, PA to run the 5k mud and obstacle course. Libbie (pictured top right) is a mucker – runners are called “muckers” – who lives with MS. She experienced symptoms during this year's event, but with the help of her incredible friends on team Libbie’s Legion, Libbie finished the course. Here’s what she had to say. "I finished yesterday - but I didn't finish strong. The heat hit me halfway through the course, and I started to sink. My team all but carried me over the finish line. Another member of my team elbowed her way through and grabbed a hose. Then they all just started cooling me off. Bringing me drinks. Helping me get changed. Getting me to the medic tent. Every person surrounded me. This picture is worth more than a thousand words. This team member served our country for many years as a West Point grad and now she was serving me. A beautiful, beautiful gesture."

BIKE MS

SEPTEMBER 2016 In September we held our two Bike MS events, City to Shore in South Jersey and Bike to the Bay in Delaware. City to Shore saw 7,000 cyclists ride anywhere from 25-180 miles, and they are on their way to raising $6 million. Bike to the Bay had another successful year, with nearly 1,000 cyclists raising almost $1 million. Both events could not have happened without the support and dedication of all of our cyclists, volunteers and sponsors.


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UNDERSTANDING YOUR OPTIONS WHEN YOU NEED CARE Because the progression of multiple sclerosis is unpredictable, many cannot be certain how the disease is going to affect their lifestyle in the future. Many can take steps to prepare for this lifestyle change that may also include needing care. As we value our independence and selfsufficiency, at some point in time that might change, and it will require assistance to get through the day. When this kind of help becomes necessary, having a support system in place is extremely critical. Some people are fortunate to have family or friends who are willing and able to help should care be needed. However, some do not want family members or friends to be the care providers, and others will have to rely on themselves or government programs that are in place for assistance. Medicare will help cover some of the cost of care, if eligibility is met. If admitted in the hospital (versus being in observation status) for three over nights, Medicare will pay for

MS CONNECTION: 2016 ISSUE 4

the first 20 days in of skilled care. Ancillary insurance, such as a Medicare supplement will typically cover the co-payment for the next 80 days, encompassing 100 days of care being paid. If not on Medicare yet, primary health insurance typically works the same way. Medicaid is another resource available. This is a means-tested program from the government and will cover for the cost of a nursing home for those individuals who meet the financial requirements. In Pennsylvania, Medicaid also offers a waiver program that will assist with home health. In Pennsylvania, it can be very expensive to pay for care that may be needed. Based on a recent cost of care study, the average home health aide cost is approximately $20.00/ hour or $31,595 a year based on 6 hours of care 5 days a week. An assisted living facility averages about $42,360 a year and a semi-private nursing home is $110,321. The cost for these type of services only continues rise. For many individuals with multiple sclerosis, long term care insurance has been very difficult to secure. However, this insurance is available to many individuals with the diagnosis depending on their current health. This coverage helps pay for care in the home, in an assisted living facility or in a nursing home. Short term care insurance is another option that has been talked about more recently. Matt Sussman, President of American


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Insurance Planners, Inc. notes, “We have been working with several insurance carriers that will consider coverage for those individuals with a diagnosis of MS. Short term care insurance is a more affordable option than traditional long term care insurance. We have found it easier for our clients with MS to qualify for this as well. We have worked with hundreds of individuals with MS over the years, and have been able to help many obtain insurance. The short term care insurance option has allowed us to help many more of those individuals we were once not able to help.� Being educated on what options may be available is a very important part of the planning process. Understanding the resources available and how to utilize those resources should care be needed is important. As it is said, failure to plan is a plan for failure. For more information on what services may be available to you, please contact American Insurance Planners at 610-398-2200 or www.aiplanners.com.

ARTICLE SUBMITTED BY MATT SUSSMAN, CLTC AMERICAN INSURANCE PLANNERS, INC

GADGET CORNER

WRITE IT DOWN Multiple sclerosis can impact hand dexterity, coordination, and strength. When you have little to no strength in your fingers, it can be awkward or nearly impossible to do simple tasks like signing checks and writing grocery lists. For an ergonomic, no-grip pen that uses the natural weight of your hand to apply pressure and press ink to paper, try ErgoSof PenAgain ($7; arthritissupplies.com). The unique wishbone shape is designed to reduce stress and the risk of repetitive injury by placing your hand in a more comfortable position when you write.


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MS CONNECTION: 2016 ISSUE 4

A NEW SENSE OF FREEDOM Housebound for seven years, Lisa Kyriacos needed a change. She was diagnosed with MS in 1989, before any treatments for the disease were on the market. “I lost sight in my right eye a month before my finals in college,” said Lisa, who was diagnosed soon after that. “The next symptom, my balance went. That’s when I called the MS Society and they recommended a doctor.” Her symptoms gradually increased, and that’s when she found herself unable to leave her house on her own. “I’m exactly ‘in half,’” said Lisa. “I don’t work from the hips down.” Eventually — she can’t remember exactly how — Lisa discovered MobilityWorks, a national chain of wheelchair accessible van providers. “Once I heard about them, my goal was to get an accessible van,” said Lisa, who now owns

a modified Toyota van. “I tell everybody, it’s been life-changing.” Learning to drive again was a little scary for Lisa. She had to learn how to use hand controls to drive. But after taking driving lessons through MossRehab, Lisa began to feel comfortable. Now, her accessible van has given her complete independence. Lisa says people are always stopping her to ask about the van. So much so, that she’s started carrying pamphlets for MobilityWorks wherever she goes. Lisa is so grateful for her new sense of freedom that she encourages everyone to push themselves, even if it’s scary, to regain their own independence – whatever that means to them. n


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LIVING WITH MS

FIVE WAYS TO HEALTHIER HOLIDAYS BY MARCELLA DURAND

Staying on a diet can be tough even under the best of conditions – which holiday gatherings of family and friends definitely aren’t. But there are ways to stay strong. Following are some tips that may help you steer toward healthier holiday eating.

1. Plan ahead. Look at your schedule for

the next month or so, and identify where you’d most like to be and what you’d most like to do, keeping in mind what will be easiest on you and your eating needs. If you’re hosting, plan a simple menu that includes fruits and vegetables—which can be easier to prepare than other dishes. For instance, prewashed salad can just be put in a bowl with some olive oil and vinegar on the side, while grapes make a sweet and easy after-dinner treat.

2. Control your environment. Try skipping

that large holiday party in favor of a small potluck gathering of friends and family. That way, you’ll have more control over what food will be in front of you. Bring a salad or plate of raw-vegetable crudités to ensure that a healthy and delicious option will be available. Fill your own plate to ensure you’re not overserved. If you must go to the large party, snack on

something healthy ahead of time so you don’t arrive starving.

3. Say no. It’s OK to say no to second

servings, desserts, another glass of wine or even staying too long. If you find yourself sticking close to the food table and stuffing yourself because a party is too loud and conversations too difficult to follow, don’t feel bad about leaving early—your hosts will appreciate the time you were there.

4. Manage expectations (and be easy on

yourself ). If you eat something you shouldn’t, it’s not the end of the world— everyone lapses occasionally. Take control by selecting special treats that you’ll really enjoy, such as a bit of cheese or a special dessert. And then balance them out with more salad or other healthy options.

5. Substitute. Swap olive oil for butter, fish for meat, vegetables for stuffing, and fruit and nuts instead of dessert. The possibilities are endless for healthy and delicious alternatives!

To learn more about healthy eating and MS, visit nationalMSsociety.org/diet. n


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MS CONNECTION: 2016 ISSUE 4

FACE OF MS: DAN DIGGIN DAN DIGGIN IS A 24-YEAR-OLD ENTREPRENEUR FROM WEST CHESTER, PA, WHO IS LIVING WITH MS. HE’S STARTED A BUSINESS CALLED DIGGIN 4 BRICKS, SELLING LEGO SETS HE’S BUILT FROM USED LEGOS. HE TALKS ABOUT WHAT DRIVES HIM AND HOW HE HANDLES HIS MS SYMPTOMS WHILE RUNNING A BUSINESS.

DAN DIGGIN, DIAGNOSED 2010

WHEN WERE YOU DIAGNOSED WITH MS?

DID YOUR DIAGNOSIS INTERFERE WITH COLLEGE?

I was diagnosed in April of 2010. So I was only 18 at the time. Up until that point I was not familiar at all with MS. When I was diagnosed I had to ask many questions. At the time, I was very lost as to what MS entailed.

I went to Fairleigh Dickinson University primarily to play lacrosse. Unfortunately, I tore my meniscus for the second time and really messed up my knee. So then I stopped playing. My MS did get a little bit worse. I was always having to come back to see my neurologist or start a new medication. So it just made a lot of sense to move closer to home. I moved back to West Chester to go to West Chester University. I got my undergrad [degree] in communications. My mom teaches business and business marketing, so she has a lot of knowledge to bring to the table.

WHAT WERE THE FIRST STEPS YOU TOOK AFTER YOUR DIAGNOSIS? It was kind of an odd time, because I was getting ready to go to college. And to be honest, a lot of doctors underplayed it. I was a nationally ranked lacrosse player, and I was still doing all those things. Pretty soon after my diagnosis, one of my neurologists put me in contact with the MS Society.


NATIONALMSSOCIETY.ORG | 1-800-344-4867

WHAT MADE YOU WANT TO START A BUSINESS? Unfortunately, with having MS, I wasn’t capable of working the typical 40 hour a week job. I found myself being able to work three, four, or maybe five days. But on a consistent basis, I’d have at least four bad days a month where I couldn’t work or be very productive. I’m only 24 years old, and I used to be a pretty good lacrosse player, so to your average person or employer, they look at me as just as capable as everybody else. I don’t always think employers were sensitive to the fact of my diagnosis. And that’s not their fault either. I always push myself to do everything anyone else can do. So I decided I was going to start my own business to get the freedom I was looking for, and so it could revolve around my daily physical health limitations.

WHAT EXACTLY IS YOUR BUSINESS? A year and a half ago, when I got done with college, I started selling all my old stuff. And I realized how much money is in used Legos. Basically, what I do is, is I accept a lot of donations, and I also buy some used Legos as well. I buy that huge bin that everyone has in their basement – that’s completely unsorted. Then I pay someone to sort those. They take out bin after bin, put them on the floor, and separate them by piece. I have hundreds of bins, and every bin has its own piece.

23 From there, I buy Lego boxes and instruction manuals. Originally I did everything, from the sorting to the building. But now I pick those pieces and then pay somebody else to build those Lego sets, at which point I post them to eBay. I also custom design my own sets. My eBay page and company name is Diggin 4 Bricks, which is a little play on my last name. I’m also going to partner with Monkey Fish Toys in West Chester and Exton. They’re making me a page off their website.

HOW DO YOU DEAL WITH YOUR SYMPTOMS WHILE RUNNING A BUSINESS? The biggest thing with my symptoms is that it’s distracting. It always feels like there’s something wrong. Whether it be my joints, being tired, being out of focus. I’ve found that Lego really helps me live in the moment. It really helps me put those problems on the back burner. Whenever you’re really passionate about something, and especially if you can make a living off your passion, it’s very easy to overcome all those challenges. With me, with Lego, I can get lost for hours on end, just because I’m so focused on what I’m doing, and what I’m creating. It’s just great to have a tangible goal. It’s almost a lot more satisfying when you can overcome something that can be so debilitating like MS. n


30 South 17th Street, Suite 800 Philadelphia, PA 19103 ADDRESS SERVICE REQUESTED

1-800-344-4867 n nationalMSsociety.org

Y E A R-END

GI V ING

Your donations make progress possible. Don’t delay - make a gift today by visiting nationalMSsociety.org/givegreaterdel or calling Maryann Aguiar at 267-765-5164.


MSConnection 2016 Issue 4 - Greater Delaware Valley Chapter