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MSConnection

Communicating with your children

about MS: A personal tale

INSIDE 10 THIS ISSUE

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CONNECTING THE DOTS: VITAMIN D AND MS

SUMMER 2012 Greater Delaware Valley Chapter

Newsletter

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26

HEALTH INSURANCE EXCHANGES

WORKING AND SSDI

FACE oF MS: Lee RoselliDomenico


02 National Multiple Sclerosis Society Greater Delaware Valley Chapter 30 South 17th Street, Suite 800 Philadelphia, PA 19103 1-800-548-4611

MSconnection: Summer 2012

local events To register for these or other events, visit calendarMS.org.

Chair: Brian DiDonato Vice Chairs: Valli Baldassano, Larry Kane,

July 18 Management and Rehabilitation of

Marianne Jackson President: Tami Caesar

July 24 Community Outreach Day –

Vice President, Communications: Kevin Moffitt Editor: Yarissa Reyes

©2012 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 pae@nmss.org or the address above. Include your name and a phone number or email where we can reach you, if necessary.

NOTE: we may edit your letter for length and content.

Advanced MS – Teleconference

Carbon County, Pa.

August 2 Community Outreach Day – Salem, N.J.

August 7 Community Outreach Day – Burlington County, N.J.

August 18 Family Fun at the Crayola Factory August 23 Making MS Work Networking

Night – Cherry Hill, N.J.

September 29 & 30 Bike MS: City to Shore Ride October 13-14 Challenge Walk MS

Connect with us online: nationalMSsociety.org/pae n pae@nmss.org Like us: facebook.com/greaterdelMS Follow us: twitter.com/greaterdelMS Watch us: youtube.com/nmsspae Pin us: pinterest.com/greaterdelvalMS


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NEWS BRIEFS Affordable care act upheld

On June 28, the U.S. Supreme Court ruled in favor of the Patient Protection and Affordable Care Act. This ruling will have a significant, positive impact on many, including the millions of Americans affected by MS. Some highlights include prohibition of coverage denials based on pre-existing conditions; prohibition of lifetime limits; elimination of annual limits; extension of parent’s insurance to age 26 allowing young adults diagnosed with MS to continue coverage under their parent’s policy; closing the Medicare Part D coverage gap to provide financial relief for those who depend on Medicare for prescription coverage; and developing a pathway for biosimilars (biologic therapies such as Avonex, Betaseron, Rebif and Tysabri), which provide some

hope of lower cost therapies in the future. To read the Society’s statement on this ruling, visit MSactivist. blogspot.com.

Clinical trial shows teriflunomide pill reduces relapses In a clinical trial involving 1,169 people with relapsingremitting MS, oral teriflunomide (Genzyme/ Sanofi-Aventis) reduced relapses compared with placebo over at least 48 weeks, according to a company press release dated June 1, 2012. Of two different doses tested during the TOWER trial, the higher dose also slowed progression of disability. This is the third completed of five phase III studies involving teriflunomide in MS.

Speeding clinical trials for people with progressive MS Disease progression, or gradual worsening, experienced by people who have MS usually occurs over

More research

Visit us online at nationalMSsociety.org/pae to stay on top of the latest MS research. many years, and it is difficult to track with the standard clinical measurement scales used by doctors to assess disease activity. An international meeting was convened to determine how to improve clinical measures so that MS progression can be better tracked, especially during clinical trials of experimental therapies aimed at stopping progression. Better ways of measuring changes in disability will help to speed the development of new therapies for MS, in particular for progressive forms of the disease. The goal is to speed clinical trials of promising therapies aimed at stopping progression or restoring function. “We can’t afford to wait years to determine whether a therapy is working against MS progression,” noted Timothy Coetzee, PhD, chief research officer of the Society. n


04 Letter from the president

HERE TO HELP It may sound obvious, and I know most of you have heard this sentiment many times before, but the National MS Society Tami caesar, president exists to meet the needs of people living with MS. However, what people often forget is that we can only meet the needs of those families who reach out to us for help. According to our database, there are now more than 14,000 people living with MS in our chapter area, the highest number ever. But of those 14,000 people, only 200 clients from our area called the Society’s Information and Referral Center seeking assistance during the month of May. The vast majority of you who did reach out were requesting financial assistance and home care, two critical service areas for families facing the challenges of MS. But we know that’s just a small part of the local MS story. The variability and incidence of MS lead us to believe that there are many more people living with MS who have unmet needs who are simply not connected to the Society.

MSconnection: Summer 2012

That is understandable – after all, the National MS Society is a club that not many people are eager to belong to. However, the staff and volunteer board of trustees truly want every person living with MS and their families to have the opportunity to discover what assistance is available from the Society and other community-based organizations in the area. And ultimately we want people affected by MS to know that they are not alone as they face the challenges that come with a lifetime living with this disease. And when we say everyone affected by MS, we truly mean it: did you know, for example, that we can help navigate confusing programs such as Social Security Disability Insurance (page 16) or the ever-changing health insurance maze (page 14)? Or that we have a respite care program that can make it possible for a caregiver to get a much-needed break while their loved one receives safe, reliable care (page 20)? I ask that if you know someone affected by MS who is not yet connected to the Society, whether it’s the person diagnosed or their loved ones, let them know we are here to help and encourage them to connect with us – because it is through our connections that we will one day make MS no more. Sincerely,

Tami Caesar, President


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Walking Forward By Tina Dabrow

Diagnosed with MS in May of 1995, I was frightened and apprehensive about where this revelation would lead. Would I wake up one day unable to walk? What was the course of this illness? How would I cope? I joined the newly diagnosed group in my area and learned some of the many facets of MS. I was lucky, my diagnosis came later in life, my children were grown and they and my husband were very supportive. Later that year I heard about Walk MS. We were living in Bucks County at the time and a walk was scheduled in Tyler State Park for the next spring. My daughter, Melissa, who was my biggest cheerleader, got things going. She recruited her friend and her friend’s mother and we became a group. Team Tina’s Troops was born! Since then we have varied in numbers, calling on college roommates of my children, friends and relatives. Melissa and I have walked every year. There were years when she was pregnant, years with strollers and years with wagons. Times of extreme heat, when I may have been the last walker back, times of rain and some beautiful days for a “walk in the park”. My husband, who could not walk the first couple of years, entered the fray and led the pack. Our son and his family joined us along with children that range in age from babies to teens. We are still walking, raising much-needed money for

research and having fun along the way. We relocated to Philadelphia and so did our walk location. We transferred to the Philadelphia Museum of Art. Last year, the children walked and after they were finished going up and down the entire Martin Luther King Drive still had the energy to run the Museum steps like Rocky! Fast forward to Walk MS 2012 and I once again marched my troop down the river. Not quite as capable as I was in 1996, I still was able to finish the challenge I set for myself this year and feel good about all I have accomplished. As we walk forward, my hope continues to be a world free of this disease. n

Thanks for making Walk MS 2012 a success!

Together we attended 18 walks where we saw old friends, made new connections and celebrated our efforts in moving forward and creating a world free of MS. Let’s keep Walk MS going all year long. Continue to grow awareness and make connections by sharing your stories, photos and videos on our social media pages: Facebook.com/walkMSphilly and Twitter.com/walkMSdelval. Thank you for making a difference.


06 MS AWARENESS WEEK RECAP Allentown Company Celebrates MS Awareness Week The Any Body Concerned about Disabilities Employee Network (ABCD), part of Air Products and Chemicals, Inc. in Allentown, Pa., sponsored an MS awareness week with a two-fold objective: raise awareness about MS and muster a corporate team for Walk MS: Coca-Cola Park 2012. The week-long campaign featured key facts about the disease that were displayed in rotation at all campus exit doors and on hallway TV monitors. Thursday’s culminating event was a chance for employees to reconnect with friends, make new contacts and learn more about MS.

MSconnection: Summer 2012

The capacity audience heard from representatives from the National MS Society, Greater Delaware Valley Chapter who shared information about the symptoms of and treatment for MS and Walk MS 2012. Attendees were also invited to take the MS Experience as a way to better understand how MS can make even the most mundane task more difficult (above). They were also encouraged to sign up for the Air Products Walk MS team. By the end of the event, the team was about 50 members strong. Promotion of the Walk MS event continued into April using the company’s e-newsletter. Attendees also received some sweet treats: MS Awareness Week Rice Krispies® treats and LIN-cream (an almost-instant ice cream made using liquid nitrogen, a product manufactured by Air Products). ABCD is one of seven networks at Air Products that focus on deepening employees’ understanding of diversity and inclusion challenges and opportunities. Network members also represent the company at career fairs and other events.


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La Salle Softball Team Wears Orange in Support of MS Awareness In conjunction with this spring’s Walk MS events around the nation, the La Salle softball team joined the cause by wearing orange in support of MS Awareness during the April 21st doubleheader against St. Bonaventure. Fans were also encouraged to wear orange to show their support. The Explorers donned orange T-shirt jerseys during the game and collected donations, benefiting the National Multiple Sclerosis Society.

Since its founding in 1946, the National MS Society has raised over three-quarters of a billion dollars to fund research aimed at eradicating MS and assisting those who experience it. The Explorers’ awareness game took place on a weekend when nearly 600 walks occurred around the nation aimed at contributing more to that total. n

City to Shore Ride 2012

Don’t just ride,

Bike MS.

Bike MS: CITY TO SHORE Ride /// SEPTEMBER 29 & 30, 2012 /// 25, 45, 75, 100, 150 and 175-mile routes REGISTER TODAY /// MScycling.org /// 1-800-445-BIKE ///

The sense of accomplishment that you’ll feel as you cross the finish line can only be matched by the difference you’ll be making in the lives of people affected by MS.


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MSconnection: Summer 2012

NEWLY DIAGNOSED

Communicating with your children

about MS: A personal tale by Julie Stachowiak, PhD

I have twin girls who are now six years old. I was diagnosed with multiple sclerosis a couple of years before they were born, so it has always been present in our little family. I guess there was never a question about whether or not to share my MS status with them — it was too big to hide. One of my first memories of the girls really understanding that I wasn’t entirely well was when I had been reduced to tears by some incident. One of my small daughters came to where

Julie Stachowiak with her two daughters

I was sitting on the ground with my head in my hands and adjusted my collar, saying, “Here you go, Mommy. I’ll take care of you.” The experts will tell you (and I can confirm) that young children pick up when a parent is not feeling well. Child psychologists will tell you that this can manifest as increased clinginess, regression in terms of speech or potty-training progress or reversion to younger behavior (such as needing a pacifier). Older children may get worried that something terrible is happening — that their parent will die, that they will die, that they did something bad and whatever is going on is all their fault. This may turn into sleeping issues or nightmares, withdrawing emotionally or acting out at school. Those same experts say that we should answer all questions about our MS honestly and directly, adjusting information as they get older. That might, or might not, work for you. I know that some people choose to keep their MS from their children until they reach a certain age or something happens where it


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must be revealed. These parents may feel they are protecting their children from the pervasive worry of having a sick parent. I think that it is an individual choice. We all have to make our own way as parents. I can’t tell you what to do — I cannot tell you that you must be open about your MS with your children. The only thing I can tell you with 100 percent clarity is that it is impossible to show your children too much love. As far as my situation goes, I have chosen to be very open with my daughters (in an age-appropriate way). I tell them when I am tired and I tell them when I feel better and I make sure that we do something fun and active during those times. We discuss MS and I have tried to explain to them what is happening in my brain. They know that I don’t like it when music is too loud or when we’ve been outside in the sun for too long. I won’t say that I have handled it perfectly. I have seen one of my daughters looking at me with a furrowed brow too many times, while the other one may come into my bedroom with “nightmares,” when I suspect she really just wants to check on me. However, I do think that they are considerate, gentle and compassionate. They seem slightly less self-centered than some of their classmates. They are not afraid of people who are different — we have friends with Down syndrome, who use wheelchairs and who are hooked up to oxygen. My girls don’t seem to see any of it, just the person whom they want to tell about their Halloween costume or their newest toy. I’m proud of that. n

Society resources for families The Society’s “Family Matters” Web page at nationalMSsociety.org/ FamilyMatters contains links to helpful brochures, programs and resources. Each issue of Keep S’myelin has fun, engaging activities to help parents and children learn about and discuss MS together. Go to nationalMSsociety.org/ keepsmyelin for back issues and subscription information. Search for and download Society brochures Plaintalk — A Booklet about MS for Families for information on talking about MS with family members and Someone You Know Has MS for children at nationalMSsociety.org. Join the online “Family Matters” community at MSconnection.org. Watch the Society video “Parenting with MS” at youtube.com/watch?v= V93TG_0LJiA.

Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and ms.about.com.


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MSconnection: Summer 2012

research

by Dr. Linda Buchwald

Exciting new research is beginning to identify both genetic and environmental factors involving vitamin D that could increase one’s risk for developing MS and could influence disease progression. Research is also targeting vitamin D as a potential therapy, with clinical trials being planned or already underway to determine whether it can prevent or treat MS.

the latitude effect There’s a long-standing observation that population rates of MS increase the farther away one is from the equator and from the sun, exposure to which is our major source of vitamin D. Could the two be connected? Researchers have been exploring that very question. Studies of who gets MS have confirmed that higher levels of sun exposure and higher blood levels of vitamin D were both associated with

decreased risk of a first demyelinating event— often the first indicator of developing MS. In addition, there is evidence that high levels of vitamin D in utero and during adolescence and adulthood also have a positive effect on reducing the risk of developing MS. Other research suggests that vitamin D may have an effect on the inflammatory processes that occur during MS flares. In a small safety study at St. Michael’s hospital in Toronto, researchers found that immune T cells involved in MS attacks were suppressed in people who had higher blood levels of vitamin D.

Genes, vitamin D and MS Studies done in families where multiple individuals have MS have resulted in new information that potentially links genetic factors related to vitamin D activation.


nationalmssociety.org/PAE | 1-800-548-4611

In December, Canadian and British researchers published the results of a study that set out to look for rare genetic changes that could explain strong clusters of MS in some families. They studied DNA in 43 individuals selected from families with four or more members with MS. The team compared the DNA changes they found against existing databases, and identified a change in the gene CYP27B1 as being of interest. The CYP27B1 gene plays an important role in converting Vitamin D to a biologically active form. The researchers then looked for the same rare gene variant in over 3,000 families of unaffected parents with a child with MS. They found 35 parents who carried one copy of this variant along with one normal copy. In every one of these 35 cases, the child with MS had inherited the mutated version of the gene.

The road forward Further research will determine if vitamin D may have preventative as well as diseasemodifying effects. We know that high vitamin D levels in people with MS have been associated with decreased risk of exacerbations and less severe disability. To what extent vitamin D can influence the course of MS once someone’s been diagnosed is still unclear; however, research is being planned to clearly define the role of vitamin D in the prevention, progression and treatment of MS. For instance, researchers at Johns Hopkins University are leading a multicenter controlled clinical trial funded by the Greater Delaware Valley Chapter to determine whether high-dose vitamin D added to standard therapy with

11 Copaxone further reduces disease activity in people with MS. What is clear is that vitamin D deficiency is extremely common in many parts of the country. The optimal approaches for vitamin D supplementation in the general population and in those with MS have not been established, yet it is important that everyone take a minimum daily amount of vitamin D supplement. I recommend at least 2,000 IU and no more than 4,000 IU per day for my own patients with MS; however, official recommendations are lower (see ods.od.nih.gov/factsheets/ VitaminD-QuickFacts), so ask your healthcare providers what they recommend for you. Due to the inherited risk of MS and the possible preventative effect of vitamin D supplementation, also discuss the possible implications of vitamin D deficiency and supplementation for your children. n As reported in the fall 2011 issue of MSConnection, our chapter is leading the way by funding a vitamin D clinical trial to determine if taking high doses of vitamin D can reduce the frequency of MS attacks and whether they are a safe addition to standard MS therapies. The clinical trial is currently recruiting people with relapsingremitting MS. To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please email vitamindtrialms@jhmi.edu. To make a donation to our campaign to fund the vitamin D trial, please contact Kristina McGraw at 1-800-548-4611.


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research

The road of a researcher By Marcella Durand

Richard Ransohoff, MD, began his long research career with a Harry Weaver Neuroscience Award from the National MS Society. “There wouldn’t have been a career, otherwise,” he says. “I had no research track record — the Society really took a chance on me.” It was a chance that paid off big time. Dr. Ransohoff’s research into the role of “chemokines,” messenger proteins that play a role in the immune system, may lead to new MS therapies. For his groundbreaking research, he was chosen by his peers as the 2012 John Dystel Prize recipient. The prize is given jointly by the Society and the American Academy of Neurology.

The role of chemokines In 1993, not too long after he received the Weaver Award, Dr. Ransohoff made the discovery that chemokines played an important role in MS. He and a colleague, Mari Tani, MD, at the Cleveland Clinic had been studying mice with EAE, an MS-like disease, when they found that astrocytes, a type of brain cell, were producing

chemokines that attracted immune cells to the mice’s brains. “It was like the disease process sat up and talked to us,” he remembers. His team then went on to study chemokines in immune cells from people with MS, where they found chemokine receptors on many of the cells involved in the immune attack.

Paving the way Dr. Ransohoff also showed that chemokines may actually help determine whether nervous system repair occurs during the course of MS. By deactivating a chemokine receptor called “CXCR2,” he found that the development of myelin-making cells was improved. “The insights that Dr. Ransohoff’s discoveries have provided could ultimately pave the way for the development of a new class of drugs in MS based on chemokines,” said Benjamin M. Segal, MD, one of the nominators of Dr. Ransohoff for the Dystel Prize. With a research grant from the Society, Dr. Ransohoff is now studying cell types with and without chemokine receptors to clarify how these cells participate in tissue damage and — with an eye toward developing a future therapy to stop disease activity — tissue repair. He also is returning the Society’s long-ago gesture of trust by mentoring young researchers and teaching them how to talk about their discoveries. “The theoretical and conceptual side of science is invisible unless you communicate it,” he says. n Marcella Durand is the associate editor of Momentum, the Society’s national magazine.


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Advocacy

CONTINUING CONNECTIONS By Renee Vandlik

This spring, MS activists helped raise awareness for MS issues at the Society’s Public Policy Conference and MS State Action Days. Activists traveled to Washington, D.C., or converged at more than 30 state capitals across the country to advance federal and state policies and programs that could impact the lives of people with MS. Hundreds kept in-person appointments with their elected officials and linked their experiences with MS to important policy and program priorities. So, what’s next? How do we remain on the frontline to drive change? We can continue to create connections — with lawmakers, the media and each other. Make plans now. Schedule an appointment or attend an in-district listening session. Summer months are ideal for meet ’n’ greets when legislators return to their districts. Are you unclear about the public policy priorities in our state? Contact us to learn more. To learn more about federal priorities, visit nationalMSsociety.org/advocacy. Remember to write a “thank you” note to officials for meeting with you and follow up on any unanswered questions or promises. Did you take a picture during your visit?

Include it with your handwritten note. Or, upload your picture and post your status on Facebook, Twitter or your blog. Find and follow your lawmakers on Facebook and Twitter, too.

MS activist ALLISON Tell your family, friends and COIA AT THE 2012 neighbors why MS PUBLIC POLICY you’re an MS Activist. CONFERENCE Connect. Follow MSActivist.blogspot.com and keep track of our nationwide MS activism progress on Twitter at: @msactivist. Join an MS Community at MSconnection.org. Here, it is all about making meaningful connections, with easy access to the best content and resources the MS community can bring. Find information about the topics most important to you, share experiences, connect with people the way you want and have expert MS information and opinions right at your fingertips. Learn more about current events, the economy and social and political priorities. Become an informed voter. And, cast your ballot in November! n Renee Vandlik is the Society’s director of State and Local Government Relations.


14 ADVOCACY

where we are: Health INsurance exchanges By Marcella durand

If you had to create a way for millions of people to learn everything they need to know about health insurance, so that they could choose a policy that’s right for them and get properly enrolled with top-notch customer support, how would you do it? That’s the question state lawmakers are facing as they consider how to organize their state’s health insurance exchange, a major component of the ACA (Affordable Care Act) due to begin operation by 2014.

MSconnection: Summer 2012

What they are Health insurance exchanges are web-based “marketplaces” where individuals and small businesses can compare and purchase affordable and qualified health benefit plans. Existing models have been compared to websites like travelocity.com or Consumer Reports’ product ratings that offer consumers a choice of options, based on their needs and preferences. In addition to information about the price of various plans, the exchanges will be able to tell people if they qualify for tax credits provided in advance to make the plans affordable. Exchanges also increase competition among insurance companies, which should bring down costs. Members of Congress and other federal employees currently get their health insurance from exchanges — an indication that exchanges will stay good resources for finding quality affordable coverage with good benefits and protections for everyone.

choose a policy that’s right for you.

Health insurance exchanges are web-based ‘marketplaces’ where individuals and small businesses can compare and purchase affordable and qualified health benefit plans. The ACA has established standards that exchanges must meet, but most of the planning and implementation will take place at the state


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level. State lawmakers can either establish their state’s own exchange through legislation, or allow their eligible residents to use an exchange run by the federal government. Many exchanges are still “under construction” as states across the nation debate what will work best for them.

What’s included

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All services of the exchange should be available to all persons eligible for its products, regardless of any disabling condition. That includes overcoming barriers due to language, as well as physical or cognitive disabilities.

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Reassurance. Exchanges will offer plans that allow people to keep their current healthcare providers. This is important to people with MS or other chronic conditions, who often have established a solid relationship with their doctor, nurse or therapist.

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Transparency. By law, details about all plan options and covered benefits, including out-of-pocket costs and benefit exclusions, must be made clear. Greater transparency in coverage will help consumers make “apples to apples” comparisons between options from insurers competing on a level playing field.

Some important features of exchanges that will help people with MS and others when they go shopping for health coverage include: ■■

User-friendly application and enrollment processes. A single, standardized application form and a “no wrong door” approach determine which programs people are eligible for and direct them through the process with a minimum of red tape.

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Security. For many people, if they lose their job, they lose their insurance, too. Exchanges guarantee a secure place where anyone who’s not already covered through an employer plan or Medicare can obtain insurance. Moreover, by law, insurance plans offered through exchanges will not be able to deny coverage because of preexisting conditions like MS.

■■

Accessibility. Help with selecting and enrolling in a plan will be available to consumers over the phone, online through the exchange’s website and in person through specially trained “navigators.” Traditional insurance brokers and agents will continue to play a role by helping business owners and other customers purchase health coverage, too.

Where we are now To find out more about our state’s plans for establishing a health insurance exchange, visit the Kaiser Family Foundation’s interactive website at statehealthfacts.org, or healthcare.gov/news/factsheets/2010/07/ esthealthinsurexch.html (click the “stateby-state” link). The Society has also set up a Web page devoted to ACA FAQs (Frequently Asked Questions) at nationalMSsociety.org/ ACAFAQS. n Marcella Durand is the associate editor of Momentum, the Society’s national magazine. Go to nationalMSsociety.org/Momentum.


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Basically, SGA is the maximum amount someone can earn before being denied benefits. According to SGA rules, in 2012 you can make no more than $1,010 (or $1,690 for the legally blind) per month while applying for SSDI. If you are making more money than that, your application will automatically be denied.

money matters

Working and SSDI By Kris Erickson

Many people with MS who have or who are considering applying for SSDI (Social Security Disability Insurance) worry that they will lose their benefits if they return to work, even parttime. The possibility of losing benefits is a scary prospect, especially if it took a long time to get approved for SSDI. However, with some knowledge and preparation, people with MS should be able to work and maintain their benefits.

Working while applying If you’re working and considering applying for SSDI, it’s essential to understand what Substantial Gainful Activity (SGA) is first.

Another important thing to know is that symptoms you list in your SSDI application as impediments to work should not be the same symptoms you’ve learned to accommodate successfully in your current job. For example, if someone submits an application listing gait and walking issues compounded by bladder incontinence, but uses a scooter to get around and self-catherization to handle incontinence on the job, then that will conflict with his or her SSDI application.

Call your local WIPA If you are already receiving SSDI benefits and are considering returning to work, contact a Work Incentive Planning and Assistance program (WIPA) first. WIPAs are nonprofit organizations with staff trained in SSDI and work issues. They can help educate people who are receiving SSDI on how to return to the work force while maintaining benefits. Visit ssa.gov/work/WIPA.html and click the “Service Provider Directory” for a listing of WIPA programs by state. Or contact an MS Navigator® at 1-800-344-4867, who will refer you to our closest WIPA program.


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Ticket to Work Most recipients of SSDI also receive in the mail a “ticket” from the Ticket to Work program. The program, intended to remove the barriers between work and benefits, is completely voluntary and consists of employment networks made up of public and private organizations. These include the Department of Vocational Rehabilitation, private employers and individuals working together to help prepare beneficiaries to re-enter the workforce. After receiving the ticket, the next step is to take it to an Employment Network, usually a vocational rehab and/or career services agency or organization. A directory of networks can be found at ssa.gov/work. The network will work with you on your specific employment goals. For more information on the Ticket to Work program, visit yourtickettowork.com or call 1-866-968-7842.

Trial Work Period Once a person awarded SSDI returns to work, a Trial Work Period (TWP) begins automatically. TWPs allow people to test their ability to work and still be considered disabled by the Social Security Administration (SSA). Any month in which a person’s work income comes out to more than $720 counts as a TWP month. TWPs last for nine months (which are not necessarily consecutive) in a rolling 60-month period of work. Visit ssa.gov/OACT/COLA/twp.html for more information about the TWP.

If you have been earning at or above the SGA amount set by the SSA, benefits will stop after the TWP ends. However, they can restart within 36 months if your income falls below the SGA or if you lose your job and continue to meet the criteria of disability. However, do not navigate these requirements alone — call an MS Navigator or contact our local WIPA if you suspect you are earning more than the SGA, or have other questions.

Why work Finally, think about what you want to get out of your work experience before starting a job. Are you trying to go back to work full time and get off SSDI entirely? Or do you want to work part time to help supplement your income on a long-term basis? The answers to these questions will help you decide what your employment future can look like and better prepare you for successfully combining work and SSDI benefits. n

Need more information? Our chapter’s MSWorks program can assist individuals with MS with concerns about maintaining current employment, career changes or returning to the work force, as well as questions about disability benefits. Contact Christina.Forster@nmss.org or call 1-800-548-4611.


18 Ray, diagnosed in 2003

MSconnection: Summer 2012

few real-world examples of accommodations that have worked for people with MS at askjan.org/soar/MS/MSex.html.) I then pointed out two things to remember about accommodations:

01 You must be able to perform the essential

functions of your job. The ADA (Americans with Disabilities Act) does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential.

money matters

What are job Accommodations and how do i get one?

Next, we discussed whether or not the ADA could be applied. People can request reasonable accommodations under the ADA if:

By Kris Graham

■■

They work for an ADA-covered employer;

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They are “qualified” to do the job; AND

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They are a person with a disability as defined by the ADA.

At the Society’s Information Resource Center, where people with multiple sclerosis and their families can call an MS Navigator® at 1-800-FIGHT-MS for help on a range of topics, we recently received a question about how to obtain accommodations when multiple sclerosis starts to get in the way of doing your job. So here’s what I told our caller. First, I explained what accommodations are. They can be things like new equipment or changes to existing equipment. Another type of accommodation may be a change to your work routine, such as hours worked. (Read a

02 Your employer does not have to provide you

with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available — so be ready to discuss alternatives.

ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions. If you’re not sure whether your employer is covered by the ADA, contact your regional ADA Center (look up your region at adata.org) or visit JAN (the Job Accommodation Network) at askjan.org. Both organizations are free and confidential resources. If your employer is not covered by the


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ADA, contact an MS Navigator® at 1-800-3444867 for assistance in exploring other possible legislation that may protect you. “Qualified” to do the job means that someone has the “skills, experience, education, or other requirements” of the position, and “can perform the essential functions of the position with or without reasonable accommodation.” (For more information, download the Disability Law Handbook — Employment and the ADA for free at swdbtac.org/html/ publications/dlh/employment.html.) The ADA’s definition of a “person with a disability” now includes most people with MS, thanks to the passage of the ADA Amendments Act and updated Equal Employment Opportunity Commission regulations. Although people with MS do not necessarily have to disclose their diagnosis, they must provide enough information for the employer to understand that they are a person with a disability. For more about work place disclosure and a helpful worksheet, visit nationalMSsociety.org/disclosure. My next advice to the caller was to be prepared! Before you request accommodations, make sure you can answer all of the following questions: ■■

How is MS affecting your job, potential job or application process?

■■

Why are you requesting accommodations?

■■

What information will you need to provide to your employer (or potential employer) to clarify the impairment affecting your work and the accommodation that will remedy the situation?

■■

What accommodations or changes to your work will be effective?

■■

When should you speak with your employer (or potential employer)?

■■

Who should you involve in the conversation?

■■

How should you follow up on your request?

■■

What are your rights if things go wrong?

Finally, I told the caller that if she had additional questions, an MS Navigator would be standing ready for her call. n Kris Graham is the employment manager for the National MS Society.

These resources can provide more help and information The Win-Win Approach to Reasonable Accommodations, available at nationalMSsociety.org/accommodations. ADA — Your Employment Rights as an Individual With a Disability, available at the U.S. Equal Employment Opportunity Commission’s website at eeoc.gov/facts/ada18.html. Employees’ Practical Guide to Negotiating and Requesting Reasonable Accommodations under the Americans with Disabilities Act, available at askjan.org/EeGuide. JAN’s Searchable Online Accommodation Resource (SOAR) at askjan.org/soar/ index.htm.


20 Living with ms

Giving Care By Terri Kuczynski, M.Div., CT

All of us give care throughout our lives, whether it is through holding a hand or helping with daily needs from transportation to bathing. We give care when we listen to another’s sadness and when we fix a meal. We give care when we send a card or manage medication. Giving care to a loved one with MS can be very rewarding and at the same time unbelievably challenging. In some ways being a caregiver is like using a battery-powered drill. At first the drill is fully charged and the task at hand seems to be manageable. As the charge dies down, the task becomes more difficult until the drill just can’t continue. The only way to go on is to recharge the drill. If the caregiver does not recharge over time, even the smallest task becomes overwhelming.

Rick, diagnosed in 1991

MSconnection: Summer 2012

Some ways to recharge are to: 01 Ask for help. Even simple things such as getting a gallon of milk for you or providing respite care so you can take a walk around the block can make a big difference.

02 Join a support group or an Internet

chat room set up for carepartners. (See ‘Carepartners Connect’ on following page for suggestions).

03 Take care of your body with proper nutrition, exercise and sleep.

04 Do something — call a friend, write a

letter, read — that gives you a daily break from the caregiving role.

05 Stay connected with community — don’t become isolated.

06 Laugh. Watch funny movies or TV programs. Just recently I visited a friend who was caring for her husband. We talked about the many difficulties of caregiving. She talked about her feelings of helplessness and shared that at times she felt a lot of anger, which in turn made her feel guilty. She went on to tell me that her husband’s physical care could be overwhelming, but keeping track of all the day-to-day activities of life sometimes seemed crushing. She felt weary and alone in this role that she was so unprepared for. After we talked, I walked out of the room and, when I turned to say goodbye, I saw her struggling to help her husband transfer from the sofa to a wheelchair. I then witnessed the true meaning of giving care. In the middle of the


nationalmssociety.org/PAE | 1-800-548-4611

transfer, I saw them share a loving embrace. It was very brief, but very intentional. At that moment I could not tell who was caring for whom. I saw two people caring for each other. What a great way for both to recharge. n

21

Caregiver Respite Care partners occasionally feel stress from the complex needs of the person with MS. As a result, they often forego taking care of themselves. To help ease the stress, our chapter provides financial assistance for respite care services. The chapter can provide financial assistance up to, but not to exceed, $1,000 for a facility stay or in-home service, once a year. For more information, visit nationalMSsociety. org/pae or call 1-800-FIGHT-MS to speak with an MS Navigator.

Carepartners connect There is a wealth of ways for carepartners to connect online. Here are a few of them. Those caring for someone with MS can create their own website or visit another’s at CaringBridge.org. Here, carepartners can keep an online journal and photo gallery, ask for help with tasks and post updates for friends and family who in turn can post messages of support. Today’s Caregiver at caregiver.com includes a map, clickable by state, of area support groups and a special section where caregivers can post their tips for others. It also offers articles and information on everything from nutrition tips to long-distance care. The Well Spouse Association at wellspouse. org is a nonprofit membership organization that offers peer-to-peer support and educates health-care professionals and the general public about the unique challenges that “well” spouses face every day.

The National Family Caregivers Association at thefamilycaregiver.org provides an online forum for caregivers to post questions or talk to others in similar situations. The Society’s online community at MSconnection.org offers a secure place for carepartners to connect. Members can create a personal profile to share posts, updates, blogs, photos, videos and links and search for other members by demographics, shared interests and more. The Society also offers a page for carepartners at nationalMS society.org/carepartners with information and resources on accessible housing, hiring home help and more. Carepartners can also participate in the Society’s Online Peer Connections program, nationalMS society. org/onlinepeerconnections. Here they select a peer support volunteer from an online database and arrange to speak one-on-one via email or telephone on an agreed-upon topic. All conversations are confidential.


22

MSconnection: Summer 2012

Healthy choices for a better quality of life When 31-year-old Danielle Witsch was diagnosed with MS in February of 2011, she was working as an accounts payable senior specialist for one of the largest floral distribution and logistics companies in the United States. The Lindenwold, N.J. resident was a busy mom and wife juggling multiple responsibilities. “My job was very demanding,” she said. “I started to have trouble focusing and getting through the day.” At 268 pounds, Danielle was also not in the best shape of her life. In March 2011, she received a scholarship from the National MS Society to receive physical, occupational and behavioral therapy. She joined Total Rehab & Fitness (TRF) in Cherry Hill, N.J. and began

BEFORE

AFTER

therapy twice per week, plus behavioral therapy once per week, she began to notice a difference in her life starting with some weight loss, as well as better movement. “I was working through the program and exercising at home per TRF’s instructions,” she said. Last summer Danielle had some exacerbations that caused her to come close to needing a cane. With the help of Dr. John Marmarou at TRF, Danielle was able to avoid that. “He’s by your side always saying let’s figure out how to get through this.”

“I can sit here feeling sorry for myself or I can do something about it. I chose the latter.”

Noticing how much better she was feeling, Danielle opted to make some lifestyle changes. She joined Weight Watchers through her work, started eating better and making healthier choices for herself. One hundred pounds lighter, Danielle started feeling like a new woman.

a multidisciplinary approach to improve her quality of life. Following a schedule of physical therapy three times per week, occupational

“I can’t say that Weight Watchers or physical therapy alone made me lose the weight,” she said. “I mean I think depression also had something to do with it. When I first got diagnosed, I had a loss of appetite. But then I


nationalmssociety.org/PAE | 1-800-548-4611

said I can sit here feeling sorry for myself or I can do something about it. I chose the latter.” At 168 pounds, Danielle is now working on maintaining her weight and continues her therapy sessions. Now on disability, she is focusing on her health and taking care of her

23 four-year-old son. She took part in Walk MS 2012 as co-captain of Team TRF. “We wanted to raise funds for the National MS Society so others like me can benefit from the programs and services the chapter has to offer.” n

Women Against MS Luncheon most successful yet The tenth annual Women Against MS Luncheon took place on Tuesday, May 8 and welcomed over 600 attendees. The generous support of our sponsors, table hosts and guests made it possible for WAMS to raise an estimated $150,000, making this our most successful WAMS event ever. The funds raised are essential to research projects conducted locally at places like the University of Pennsylvania and in centers around the world, as well as providing critical programs and services for people living with MS. We congratulate Dr. Amy Gutmann, president of the University of Pennsylvania, on being named our Woman of Spirit and thank her and motivational speaker

Woman of Spirit Award recipient Dr. Amy Gutmann with the Penn University Glee Club Zoe Koplowitz for making WAMS 2012 a positively inspiring experience. Each and every person who joined us has united to make WAMS a powerful movement, truly making a difference in the lives of the 14,000 families living daily with the unpredictability of multiple sclerosis. n

We thank you.


24 Dinner of Champions to honor Judith M. von Seldeneck The Greater Delaware Valley Chapter presents its highest honor, the Hope Award for philanthropic service and community leadership, at its gala event, the MS Dinner of Champions. We are pleased to announce that we will present the 2012 Hope Award to Judith M. von Seldeneck, founder, chairwoman and CEO of Diversified Search, on November 9 at the Philadelphia Marriott Downtown. The dinner is expected to draw more than 600 guests. Past Hope Award recipients include Joseph A. Frick, David L. Cohen, Nicholas DeBenedictis, Bob Hall, Mark S. Schweiker, the late Joe Paterno, Warren V. “Pete” Musser, Ed Rendell, the late G. Fred DiBona, Jr., Rosemarie Greco, Larry Kane, Eric Lindros and Ed Snider. The MS Dinner of Champions is spearheaded by a wide range of business and civic leaders, including David L. Cohen, Peter Dean, Larry Kane, Ira Lubert, the Hon. Nicholas Maiale and Molly D. Shepard. In addition to recognizing the contribution of local leaders, this fundraising event is pivotal to the National MS Society’s vision of creating a world free of MS.

MSconnection: Summer 2012

Honoring Judith M. von Seldeneck Founder, Chairwoman and CEO of Diversified Search

Honoring Judith M. von Seldeneck Founder, Chairwoman and CEO of Diversified Search

Friday, November 9 • 6-8 p.m. Philadelphia Marriott Downtown Business/cocktail attire To purchase ticketsabout ($350 each), For more information this event or contact us at 215-271-1500 by email to purchase tickets ($350or each), at kristina.mcgraw@nmss.org. please contact us at 1-800-548-4611 or by email at dinnerofchampions@pae.nmss.org.


25

nationalmssociety.org/PAE | 1-800-548-4611

In Memoriam Wade Brody, longtime fundraiser for Walk MS and the founder of the Parvin State Park site, passed away on June 6, 2012. Wade made MS his fight. Not for himself, but for everyone living with MS. Quite simply, Wade didn’t want anyone else to go through what he faced on a daily basis. He founded the Walk MS event in Parvin State Park in 1998 and in so doing helped the National MS Society raise more than $2.7 million over the years. He was a true inspiration: he was an advocate, a

community leader and a symbol of strength to our MS family. Wade had a smile that would light up the room. He was a true inspiration and will be dearly missed.

WADE BRODY

A memorial fund was created in his name to support promising research into the cause, treatment and management of MS.

Donations can be made to: bit.ly/wadebrody

Calling all artists The Greater Delaware Valley Chapter invites artists to submit their works to help raise funds for the fight against MS. If selected, your art will be featured on the front cover of memorial and tribute cards, with a short biography on the back cover. The winning artists will be profiled in the fall edition of MSConnection. Artwork may also be exhibited at the chapter’s Annual Meeting in November.

Entry Rules: ■■

Candidates may submit up to three works of original art in each category of Memorial and Tribute

■■

Deadline for entries is September 1, 2012

■■

Send jpegs of your artwork with the title and medium listed, as well as your name, email and phone number to: nmssphotos@gmail.com with the subject: Art Entry

SHOULD YOU HAVE ANY QUESTIONS, PLEASE CONTACT KRISTIN.MARNIE@NMSS.ORG OR CALL 1-800-548-4611, EXT. 24116.


26 Face of MS: Lee RoselliDomenico When you first meet Lee Domenico, you can’t help but smile. She has a contagious smile and warm spirit. An avid volunteer with the Greater Delaware Valley Chapter, Lee has taken part in numerous events and is a strong advocate for the rights of people living with MS. In her own words, Lee tells us her story about living with MS. I was diagnosed with MS on October 27, 2010. It was a bittersweet day for myself and my family. We finally had an answer as to what was wrong with me for the past 10 years. No, I really didn’t want to have MS, but in the same breath, I also didn’t want to continue life thinking I was crazy. I had spent 2000-2007 in and out of doctors’ offices and the emergency room, and I was

Lee DOmenico with her Walk MS team

MSconnection: Summer 2012

sent to many neurologists only to be told I had Epstein-Barr Virus (EBV), anxiety and/ or fibromyalgia. I never thought MS was a possible diagnosis as I had a co-worker who had MS and his condition was slowly deteriorating. I looked good on the outside but was not feeling well on the inside. The year 2010 started a little slow. We had an unseasonably warm April and May that year and I was experiencing not only pain and weakness, but I could not perform simple tasks at my job. I was making mistakes, slurring, talking gibberish and after a run my arms would turn into rubber and I could not even hold a pen in my hand. Two days before my 46th birthday, I went for a checkup and had blood work done. A week later I was told that my EBV levels were once again elevated. My doctor gave me a B12 shot and off I went. The next morning I could barely walk. I hadn’t felt that much pain after a good run. I drove 30 miles to work and barely made it to my desk. I thought it was a reaction to the shot since it was my first. I went to see my doctor and not two minutes into my exam he said something I was not expecting, “Lee, I believe you have MS.” Since my official diagnosis later that year, it has been a rough road. A road I was not prepared for. I am now on my second disease-modifying therapy, have had three rounds of steroids with complications that landed me in the hospital and when I went for my third Tysabri infusion, I learned I was in the middle of another exacerbation, or relapse.


27

nationalmssociety.org/PAE | 1-800-548-4611

“For me, every day is MS awareness. I am a small voice trying to speak out for all of us.” For me, every day is MS awareness. I am a small voice trying to speak out for all of us. Our local hometown paper, The Hammonton News, did a feature article on my efforts to raise awareness. To celebrate MS Awareness Week, I wrote a letter to the mayor of Hammonton asking if they could light town hall in orange lights for Awareness Week. I also sent over 100 letters to local businesses asking if they could place an orange light in their window and if they would sell the MS sneakers to benefit our walk team, Lee’s MSketeers. I also mailed letters to the editor in chief to all our local newspapers. I was given the opportunity to represent the chapter at the Public Policy Conference in Washington, D.C. this spring and I’m so excited to put to use what I learned and advocate for all of us. My family has also started our own foundation, Lee’s MSketeers Foundation to help local families who are financially struggling with MS. We are just getting started and we will be working closely with the Greater Delaware Valley Chapter of the National MS Society. I am not on the road to the life I had planned and that is okay. I am not angry or bitter. I am motivated and passionate. The path I now follow is to raise awareness of MS and to educate the public of the disease. n

Lee domenico at the 2012 MS public policy conference

Home-ABLE Program now accepting applications We are now accepting applications for bathroom modifications, the installation of new stair-glides, ramps and more. Clients can request an application by calling 1-800-FIGHT-MS or download it online at nationalMSsociety.org/homeABLE.


Free Matter for the Blind or Handicapped

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

1 800 548 4611

n

nationalMSsociety.org/pae

CONNECT WITH US ONLINE: facebook.com/greaterdelMS @greaterdelMS youtube.com/nmsspae pinterest.com/greaterdelvalMS

ten years. one mission. Countless stories. 2 days. 30 miles. October 13-14, 2012 Challenge Walk MS is more than just a walk. It’s a challengephilly.org commitment to the more than 13,000 local people living with MS that you will go the distance to fight this disease. It’s a commitment to their families that you will work tirelessly to help us find a cure.


MSConnection Summer 2012  

MSConnetion Summer 2012, for the Greater Delaware Valley Chapter, National MS Society. Learn about the Society's research focusing on the be...

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