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T here is no question too big or too small at the IRC. Do you want to know more about educational programs and services in your

area? Give us a call. Are you looking for ways to volunteer, get involved with Advocacy or need help finding a local support group? Just dial 1-800-344-4867. Trained information and resources specialists can also help you start the process to get the co-pay for a wheelchair or connect you to an MS savvy health care provider. Even if you’re not sure what you need because of recent changes in the way MS is affecting you or your family, a compassionate professional will be at the other end of the phone to guide you. “Our mission includes emotional support,” said Lisa Custy, MSCIR, associate vice president of the IRC. “We don’t give information in a vacuum.” The service is open to family, caregivers and other members of your support system, too. The sooner you call us when you’re facing a problem, the more likely we can help you find a

solution. Our goal is to support your independence and give you the tools you need to manage your own disease. The IRC database has links to local, state and national resources, and we’re continually updating, so we appreciate hearing about anything you’ve discovered that might be useful to others. Remember: We’re here for you—call 1-800-344-4867.

Coming Soon!Keep your eyes on your mailbox for a new resource guide of Chapter programs, services and resources. This handy reference booklet will give everyone affected by MS access to the essential information and assistance found on the Chapter website.

Help is a phone call awayDon’t you wish there was one phone number you could call from anywhere to answer all of your questions about managing life with MS? Good news: there is! If you dial 1-800-344-4867, you’ll connect with a real, live person in the National MS Society’s Information Resource Center (IRC), ready to tap into a vast pool of resources just for you.

Eric Caputo, diagnosed in 2004

J O I N T H E M OV E M E N T: MSnorthwest.org

National Multiple Sclerosis Society Greater Northwest Chapter Regional Office 192 Nickerson St., Ste. 100 Seattle WA 98109

1-800-344-4867

CHAIRMAN: Bill Brown

CHAPTER PRESIDENT: Patricia Shepherd-Barnes

CONTRIBUTING WRITER: Team Soapbox

DESIGN: DavidOwenHastings.com

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.

©2011-2012 National Multiple Sclerosis Society, Greater Northwest Chapter

ms connectionThere’s a place at Walk MS for you

L ast spring, 93-year-old Rose Hill embarked upon her third Walk MS in honor of her son Mike, who was diagnosed with multiple

sclerosis 10 years ago. She wanted to do something to help her son, and so many others affected by the disease, live better lives. To get in shape for the big day, Rose walked laps around her retirement home, determined to be ready for the four-mile Walk MS route. On the day of the event, Rose made it half way when she started to fade. Her family asked if she wanted a ride to the end and her reply was, “No way!” Grandchildren, children, and friends held onto her arms and together they trekked toward the finish line. Finally the team arrived, and a huge smile appeared on Rose’s face.

Now 94, Rose has already registered for Walk MS 2012 as co-captain for her team, A Rose for a Cure. This will be her fourth event. So what should you take away from this story? There is a place for everyone at Walk MS. You’ll see family members, young professionals who have been newly diagnosed, retirees living with progressive MS, or moms tackling the challenges of their disease alongside others who understand. Walk MS is for anyone who wants to do something about MS now. Whatever your experience is with multiple sclerosis, we invite you to join us at Walk MS 2012. Be a part of this rallying point of the MS movement, part of a community coming together to raise funds and celebrate hope for the future. You can start a team, join a team, volunteer or just be there. Meet new people, learn about Chapter programs and services, and help get us closer to a cure.

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Get Involved There are 21 different walks in three states across the Greater Northwest Chapter this April and May. See dates and locations, register and learn more today at walkMSnorthwest.org or call 1-800-344-4867, option 2.

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Twenty years ago, in August 1991, when my children were six, four, and 11 months old, I was diagnosed with MS. My youngest child, Kaija, was taking her first steps while I was losing the ability to walk. I used a cane, but soon needed crutches, and by the time Kaija was two, I was using a wheelchair most of the time.

Last year, in a college photography class, Kaija was given the assignment to do a photographic essay. She chose “Disability” as the subject and framed images that showed her development as a little girl with portrayals showing the progression of my disability. There is a photo of her little shoes with my cane, representing her learning to walk alongside my difficulty walking. Included is a sequence of shoes to illustrate her growing up, my mobility aids, our legs together, her self-portrait in a wheelchair, and other images depicting her memories and perceptions of disability.

We talked about what it was like for her and her brothers growing up. Looking at her little red shoes, I said to Kaija that I had never held her hand and walked with her.

Her reply: “I always had your lap.”

Donna Fellman lives in rural Maine.

Copyright Kaija Fellman

Picturing disabilityBY DONNA FELLMAN

J O I N T H E M OV E M E N T: MSnorthwest.org4

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The good news about planning a pregnancy when you have MS is that there’s no evidence that MS has any effect on fertility; pregnancy usually reduces exacerbations (although flares do tend to increase postpartum); and good outcomes are the norm.

Nevertheless, making the decision to get pregnant can be complicated, primarily because of the physical challenges of MS, says Barbara Green, MD, director of the West County MS Center, St. Louis. “I also suggest women think about and discuss with their partners the emotional and financial challenges of raising a child, which could affect work and managing the disease.”

Julie Hammond, diagnosed with MS in 2002, with son Travis. Courtesy of Greater New England Chapter.

Preparing for pregnancy

Meds, pregnancy and MSNone of the disease-modifying drugs (DMDs) are approved for use during pregnancy, and most should not be taken for a few months beforehand. “The risk time is when you’re attempting to conceive,” noted Dr. Green. Plan a discussion with your neurologist about when to stop DMDs—and when, after delivery, to begin them again.

“Until recently, most studies were neutral about whether breastfeeding was protective in preventing relapses,” says Dr. Green. “But a new study quotes a beneficial effect on relapse. People with non-aggressive disease may be able to wait to resume DMDs, which can’t be taken while nursing.”

Include any symptom-management medications in the discussion with your doctor. From bladder problems to fatigue, pregnancy can make MS symptoms worse, yet many meds are not safe for pregnant women. “We advise people on non-pharmaceutical approaches: getting enough sleep, adjusting work schedules and exercising,” says Dr. Green.

“Symptoms during pregnancy are probably not MS—tiredness doesn’t mean your symptoms are coming back,” says Eileen Davis, APN, who has worked with people with MS for 12 years in New Jersey and New York. Keep exercising, she recommends, “so you aren’t carrying unnecessary weight post-pregnancy, which can affect symptoms such as falling.”

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Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.

JOIN THE MOVEMENT®

Connect the teamConnect your obstetrician and neurologist to coordinate your care. Visit www.nationalMSsociety.org/pregnancy for “Pregnancy, Delivery and the Post-Partum Period” to share with health-care professionals. If anesthesia is part of your birth plan, arrange a meeting with the anesthesia team. All forms of anesthesia are considered safe for women with MS.

Don’t wait to plan for what happens after delivery. Tap family and friends about helping with housework, food and, of course, watching the baby!

Resources on MS and pregnancy Check out the Society’s collection of videos, books, booklets and Web pages that you can download, or call us for free print copies.

www.nationalMSsociety.org/pregnancy

“MS and Starting a Family”—Momentum, Winter 2010-2011 www.nationalMSsociety.org/Momentum (click “Back Issues”).

Kara’s Story – Part I www.youtube.com/watch?v= F1-heWHC7jI The National MS Society follows Kara from her first trimester…

Kara’s Story – Part II www.youtube.com/watch?v= npgN99NeD1k&feature=channel

…all the way through to the birth of her baby boy.

The MS Daily Minute www.nationalMSsociety.org/dailyminute

Sixty-second videos packed with information on:

• Beginning MS Therapy after Pregnancy

• Relapses During Pregnancy

• Breastfeeding with MS

• Support During and After the Pregnancy

J O I N T H E M OV E M E N T: MSnorthwest.org6

Flu shot, or not?Flu season brings not just coughs and sniffles, but the question: Get a flu shot, or not?

Because there is a much higher risk of an MS relapse due to flu than to the flu vaccine, the Society generally recommends that people with MS get the shot. “Don’t wait for flu season to catch up with you. Discuss getting the flu shot with your doctor to protect yourself this year,” says Rosalind Kalb, PhD, vice president of the Society’s Professional Resource Center.

The injectable flu vaccine—which is an “inactivated” vaccine—has been studied extensively in people with MS and is considered quite safe. It may be taken by people on an interferon medication, glatiramer acetate, or mitoxantrone. It is not yet clear if the vaccine is as effective for those talking natalizumab or fingolimod.

It’s best to delay vaccination for four to six weeks after the onset of any serious exacerbations. People with MS should avoid FluMist, a live-virus flu vaccine (sometimes called LAIV for “live attenuated influenza vaccine”) delivered via nasal spray. For more information, go to www.nationalMSsociety.org/vaccinations.

Tax deductions beyond medicine

Many of the expenses associated with managing MS might be tax deductible, beyond medicines. (Keep in mind that only unreimbursed medical expenses that exceed 7.5% of your adjusted gross income are deductible.) Here are additional possibilities:

• Equipment and extras, such as service dogs (and dog food!) and transportation to doctor appointments via car service or taxi if you can no longer drive.

• Home modifications that don’t increase a home’s value. “Get a doctor’s prescription for ramps, wider doorways, grab bars, even a swimming pool, as well as a letter from a real estate agent stating that these changes don’t make your home more valuable,” suggests Anne Davis, program director of Legal Services for the Society’s New York City and Southern New York Chapter.

For people receiving SSI or disability benefits, impairment-related work expenses may be deducted from their earnings, if their income might otherwise jeopardize their government benefits.

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Two IRS Publications—907, Tax Highlights for Persons with Disabilities (www.irs.gov/pub/irs-pdf/p907.pdf) and 502, Medical and Dental Expenses (www.irs.gov/pub/irs-pdf/p502.pdf)—may be helpful. Consult an accountant to make sure your particular situation is in line with current IRS regulations.

Someone to talk toWhether you’re newly diagnosed or have been living with MS for years, talking with someone who has walked a mile in your shoes can make all the difference. That’s why the National MS Society offers two ways to connect over the phone with other individuals living with MS. Discuss treatment options, employment concerns, or relationships with family and friends. Share your story in confidence to discover how others are managing the challenges of this unpredictable disease to live their best lives.

1. Someone to Listen—Peer Support Program matches you with trained volunteers, who offer regularly scheduled, ongoing support over the phone to help you set goals and learn new coping skills. Call 1-800-344-4867 and press option 1, or visit MSnorthwest.org to make the connection today.

2. MSFriends connects you quickly with a trained volunteer living with MS, so you can get the support when you need it. MS knows no timetable. Get started now and call the MSFriends helpline at 1-866-673-7436 or visit MSnorthwest.org to learn more.

Self-Help GroupsLooking for other ways to make connections in your community?

Find a Self-Help Group near you: Call 1-800-344-4867, option 1, or visit MSnorthwest.org

Michael Gerber, diagnosed in 2004

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In the largest MS genetics study ever, researchers have documented 29 new genetic variants associated with MS, and confirmed 23 others previously implicated in the disease.

Most of the genes were related to immune function, and more than a third have already been linked to autoimmune diseases. A large number were related to T-cell function; T cells, a type of white blood cell, play a major role in the immune system’s attack against the nervous system in MS. Also, two genes linked to vitamin D were found: research increasingly suggests that low vitamin D levels are a risk factor for developing MS. (The Society is funding a new clinical trial of vitamin D supplementation.)

The study, a collaboration between the International MS Genetics Consortium and the Wellcome Trust Case Control Consortium 2, was published in the August 11, 2011, issue of Nature, and involved nearly 10,000 people with MS and more than 17,000 who do not have the disease. While the results of genetics studies haven’t so far resulted in the ability to do individual genetic counseling, these and further findings should help uncover what causes

MS and improve treatments. The Society is funding a second large study to confirm and expand these results.

New MS therapy moves forward The first phase III study of alemtuzumab (proposed brand name Lemtrada) for relapsing-remitting MS found that the drug met one of two primary endpoints. Researchers found that people treated with the drug had 55% fewer relapses over two years compared to those taking the interferon Rebif. However, results of the trial’s other goal, to delay disability, were not statistically better than Rebif. The study, called CARE-MS I, involved 581 people with relapsing-remitting MS. Another trial, called CARE-MS II, is still underway.

Alemtuzumab is a monoclonal antibody that attacks the cells in the immune system that contribute to myelin damage. It is presently approved by the FDA to treat B-cell chronic lymphocytic leukemia. Sanofi and Genzyme, the drug’s sponsor, plan to seek approval of this intravenous drug for MS in the U.S. in early 2012. In June 2010, the FDA designated alemtuzumab a “Fast Track Product,” which should expedite its future review after results of the phase III trials are submitted.

Bone health may begin earlyPeople with MS have long been known to be at risk for bone loss, but a study published in the July 12, 2011, issue of Neurology suggests that it can occur very early, even before MS has been diagnosed.

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According to the study, low bone mass is more widespread among people newly diagnosed with MS, or those with clinically isolated syndrome (or CIS, a single episode of MS-like symptoms), than among people without MS. Study researchers measured bone density in 99 people newly diagnosed with MS or CIS, compared to 159 people without MS. More than half of the people with MS or CIS had low bone mass, compared to 37% of controls.

Previously, scientists had speculated that people with MS are at greater risk of low bone density and broken bones due to factors such as lack of exercise stemming from mobility issues, medications or low levels of vitamin D (which plays a significant role in building bone). The researchers suggested that even early in MS, people should pay attention to good bone health by getting adequate vitamin D and calcium, as well as by performing weight-bearing activities. For more ideas on promoting bone health, go to www.nationalMSsociety.org and search for “You Can Build Healthier Bones.”

MS research takes center stageIn October, About.com blogger Dr. Julie Stachowiak and producer/director Kate Milliken—both of whom live with MS—reported live from the world’s largest MS conference at the Society’s blog.

At the fifth joint meeting of ECTRIMS and ACTRIMS (the European and Americas Committees for Treatment and Research in MS), over 5,000 of the world’s leading scientists and clinicians gathered October 19-22 in Amsterdam. Results from four phase III studies on MS therapies were presented, along with the latest research on MS risk factors, treatments and diagnosis.

Join the conversation at blog.national MSsociety.org, and connect with people with MS, the people who care about them and MS experts.

J O I N T H E M OV E M E N T: MSnorthwest.org

Get Involved Join the Alaska Government Relations Committee to help monitor and take action on legislation that impacts people living with MS. Learn more at AKmovesMS.org.

Montana’s Government Relations Committee is preparing for the 2013 legislative session by researching issues that most impact the MS community. Learn more at MTmovesMS.org.

In Washington we’re focused on preventing cuts to services for people with MS like Medicaid, long-term care, Basic Health and Disability Lifeline. Learn more at WAmovesMS.org.

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Legislators in our state capitols and in Washington, D.C. make decisions every day on laws that affect the quality of life for people in the MS community, including policies on medical research, health insurance benefits and long term care. At the National MS Society, Greater Northwest Chapter we relentlessly advocate for change essential to those affected by MS. But on any given day, there are many other voices out there also trying to get their issues to the top of the list.

That’s why it’s critical for you to reach out to your elected officials, and not just once, but time and again. If we raise our voices collectively and consistently, we can ensure that matters important to people living with MS are not drowned out by the noise.

Luckily, we make it easy for you to get involved and take action when it’s needed most.

• The first step is to sign up for our Action Alert emails to receive details on immediate calls to action and updates on important issues at the state and federal level.

• The second step is just as important—responding to these calls for action as soon as you receive them. We provide a simple form for you to complete online, where you can personalize your message and with a click of a mouse, send it off to your legislators.

We regularly see the result of activism in our Chapter community. In Montana, a bill to improve the state’s high-risk health insurance pool was stalled, but MS Activists conveyed to legislators how important it was to people who live with MS, and the bill soon became law. Now, it’s easier and less expensive for Montanans to access health insurance.

While email through Action Alerts is the easiest way to get the attention of your legislators, other powerful ways include handwritten letters, phone calls and in-person visits. All will build the momentum we need to ensure people with MS are not forgotten by our elected officials.

Sign up for Action Alerts at nationalMSsociety.org/MSActivist and follow the Chapter’s advocacy work in Alaska, Montana and Washington on our new blog We Move MS at wemoveMS.blogspot.com.

The National Multiple Sclerosis Society is dedicated to creating a world free of MS.The National MS Society, Greater Northwest Chapter educates, inspires and empowers those affected by multiple sclerosis. We create innovative programs to meet the needs of people with MS and their families, host exciting fundraising events to give supporters a meaningful role in the MS movement, and fund cutting-edge research into treatments and a cure. With a passion for bringing about a world free of MS, we help everyone affected by the disease to live richer, healthier, more independent lives.

If You or Someone You Know Has MSStudies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at nationalMSsociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

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Living and learning with MS

F E AT U R E D S P E A K E R : N. Roger Cooke, M.D., Medical Director of the Providence Holy Family Multiple Sclerosis Center, Clinical Associate Professor for Univ. of Washington.

APR. 5: Managing MS as a FamilyWhen one member of a family has MS, it is important that the entire family learn how to redefine what’s normal. Strategies for improving communication, talking to kids about MS and navigating parenting challenges can make a difference in supporting your family as a whole. Join this teleconference to learn these skills and more. F E AT U R E D S P E A K E R : LuAnn Pierce, LCSW, Care Management and Counseling Provider for the Colorado-Wyoming Chapter of the National MS Society.

GRUPO DE APOYO EN ESPAÑOL

La Sociedad Nacional de Esclerosis Múltiple ha comenzado un grupo de apoyo en español, por teléfono, para las personas con EM. El único requisito para participar es haber sido diagnosticado de esclerosis múltiple. Este programa es totalmente gratis. Para más información, o para registrarse, por favor llame al 1-800-344-4867, y oprima el número 3.

Monthly teleconferencesLearn from the comfort of your own home through

Chapter-hosted teleconferences on the first Thursday of every month for all members in Alaska, Montana and Washington. Hear the latest MS news,

ask questions of knowledgeable speakers, and take away useful strategies. There is no cost to you with the toll-free number. All teleconferences begin at 6:30 p.m. PST / 5:30 p.m. AKST / 7:30 p.m. MST and include time for questions and answers. Learn more or RSVP online at MSnorthwest.org or call 1-800-344-4867 and press option 1.

FEB. 2: Maintaining Your Balance with MSCurrent research is beginning to help us understand the root causes of imbalance and falls in MS. Join us to gain useful tips on how to optimize your balance and minimize your risk of falling. F E AT U R E D S P E A K E R : Michelle Cameron, MD, PT, Department of Neurology, Oregon Health & Science University, Portland, OR.

MAR. 1: Current and Future Drugs for MS TreatmentProgress has been made in the treatment and management of MS over the past decade. Join this teleconference to brush up on the current treatments available and learn about promising options for the future.

Giving you support just in time MS doesn’t wait for a convenient moment to disrupt your life, so we don’t want you to wait for assistance. Our recent Chapter Needs Assessment illustrated how much you appreciate customized help that comes at the right time. We heard you, and we’re striving to be responsive to your needs.

Greater Northwest Chapter Regional Office 192 Nickerson Street, Suite 100Seattle, Washington 98109

1-800-344-4867

MSnorthwest.org

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ADDRESS SERVICE REQUESTED

Our MS Navigators provide “just in time” assistance and information via the web, email and/or telephone.

n Knowledgeable volunteers dedicated to working with people living with MS will help navigate your health insurance coverage.

n Financial planning professionals and legal experts can give advice on planning for your future.

n Our employment consultations can give tips on managing stress and symptoms at work, while working to determine how to deal with disclosure, accommodations and discrimination.

We can get you started with a plan for making decisions and spend time problem solving with you. Think of us as a partner to support you in taking control of your MS to live a richer, more independent life. From Social Security Disability Insurance, legal rights, health insurance,

employment issues and financial planning, let’s work through whatever it is together.

No need to wait. C A L L 1-800-344-4867, press option 1

E M A I L MSnorthwest@nmss.org

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