SUMMER 2013 blue ridge chapter
MS Connection Newsletter
Beat the Summer Heat page 12
INSIDE 04 THIS ISSUE
Facing Congitive Challenges Together
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Research: Progress at AAN Meeting
2013 Event Updates
Weekend Escape Dates Announced
02 Be Orange...Go Green In order to make better use of our resources, the Blue Ridge Chapter is using email to keep our members up-to-date. To receive future program announcements and be orange while going green, please email vab@ nmss.org to share or update your email address.
Connect with us online: Blue Ridge Chapter www.nationalMSsociety.org/ vab
MS connection: Summer 2013
Staff Announcement
Farewell to Fay
It has been 36 years since Fay Painter started her career with the National MS Society as the Readathon coordinator in the DC chapter. The world of MS is a little different now than it was in 1977: • CAT scans and MRIs are now used for the diagnosis of MS. • The use of steroids was introduced to suppress immune activity. • Disease-modifying therapies were developed, including three oral medications. • Research has been expanded to attract studies in patient management, care and rehabilitation. Fay oversaw the development of many activities and events in the Blue Ridge Chapter since her tenure as chapter president began in 1984, including the development of Walk MS and Bike MS events, Dinner of Champions and Women on the Move. These events have supported the growth and expansion of programs and services throughout the chapter. Through these many changes, Fay remained steadfast in her dedication to all those affected by MS.
Like us: www.facebook.com/ This summer Fay starts a new chapter in her life outside the National MS Society. Her first adventure will be traveling with The Friends of nmssblueridge Barnabas Foundation to Honduras to work in the eye clinic. The staff, www.facebook.com/ board of trustees and volunteers of the Blue Ridge Chapter recognize her for her tireless effort to create a world free of MS and wish her and walkMSblueridge her family joy on the road ahead. www.facebook.com/ CountryRoadsRide www.facebook.com/ TourDeVine Follow us: @MSBlueRidge
The Blue Ridge Chapter honored Fay on her 35th Anniversary with the Society in 2012 with the introduction of the Fay Painter Service Award. Nina Gregory was the first recipient of the award to recognize the outstanding commitment of a volunteer.
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Technology
New Phone System To better serve those living with MS, the chapter is using a new phone system to allow you to connect directly to an MS Navigator or to a staff member. When you call the Charlottesville (434.971.8010) or Charleston (304.343.5153) office, you will have the following options: Press Press Press Press Press Press
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Enter extension of the staff member Ask questions about MS, resources and programs and services Dial a staff member by name Register for a fundraising event Ask questions about fundraising events Leave a message in the general mailbox
Annamarie Bonanno, Walk Coordinator Direct - 434.971.8011 Extension - 65011 Ben Vucic, Bike Coordinator Direct - 434.971.1073 Extension - 65013 Carrie Dahlquist, Engagement Manager Direct - 434.465.6042 Extension - 65022 Deirdre Kelly, Events Sr. Manager Direct - 434.465.6038 Extension - 65018 Delton Hanson, Operations/Programs Director Direct - 434.465.6035 Extension - 65015 Deree Vance, Programs & Services Coordinator Direct - 434.465.6045 Extension - 65012 Diana Oakley, Finance Manager Extension - 57042
Heather Snyder, Programs & Services Coordinator Direct Line - 304.343.8841 Extension - 65101 Patricia Rouse Pope, Development Director Direct - 304.414.3459 Extension - 65100 Paul Kingston, Programs & Services Sr. Manager Direct - 434.971.6844 Extension - 65014 Rebecca Green, Leadership Events Manager Direct - 434.465.6036 Extension - 65016 Sharon Key, Database Coordinator Direct - 434.465.6044 Extension - 65024 Toinette Key, Office Manager Direct - 434.465.6043 Extension - 65023 Victoria Paul, Walk & Bike Coordinator Direct - 304.343.8842 Extension - 65102
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MS connection: Summer 2013
Living with ms
To-do lists can help those with cognitive issues stay organized
by Mindy B. Alpert & Andrea S. Kantor
she can’t remember what someone has said if she doesn’t write it down. It takes a lot of energy for Mindy to focus and get important things done, and she is generally more capable early in the day. She also has difficulty multitasking, organizing and prioritizing. To help with this, she uses a week-at-a-glance calendar as a to-do list to stay organized, and she uses a highlighter to emphasize priority items. Her BlackBerry is also a great tool because she can send herself reminders.
Facing cognitive challenges together We both live with multiple sclerosis and this is our story. Mindy was diagnosed with MS in 1998, and she has cognitive challenges, as well as other invisible symptoms. As Mindy’s partner since 1999, Andrea lives with MS in a different way, because the disease affects their life together.
Managing as a team In 2001, Mindy left a successful career in the financial industry as a result of severe fatigue and her cognitive challenges. She doesn’t always understand what people are saying, and sometimes has to ask them to slow down and repeat it, especially when they are giving instructions. This is especially true when there’s background noise or when she’s with people she doesn’t know well. Mindy also has trouble with word retrieval and sometimes with expressing herself clearly. It can be very frustrating when people get impatient, and the pressure makes it even harder. Sometimes
It takes a lot of energy for Mindy to focus and get important things done. Andrea has cut back on certain types of socializing, including parties and get-togethers that begin later in the evening. She could go alone, but she would rather be with Mindy. When they first got together, Andrea noticed that Mindy had trouble focusing on and following conversations
nationalmssociety.org | 1-800-344-4867 at gatherings, and that she would disengage from the conversation. When Mindy is struggling to find a word, Andrea often jumps in and says it for her, and then Mindy can go on with whatever she was saying. Sometimes Andrea repeats any questions to give Mindy more time to phrase a response. This interaction happens very naturally, and most people don’t even notice what is really going on between us.
A united life Mindy sometimes tells people about her cognitive issues so that they can hopefully understand when she’s struggling. At times people don’t believe that Mindy has challenges and limitations because she looks fine. Having cognitive issues is tough and, like many people living with symptoms of MS, Mindy grapples with them every single day.
It is not supportive to tell someone they don’t really have a problem. However, Mindy has developed effective ways of functioning and compensating for the challenges, so that much of the time, the challenges are not obvious to most people. When an issue does come up, some people may think they’re being supportive when they say that everyone develops memory problems as we get older. But this is very invalidating because Mindy has had serious cognitive challenges since her 30s that are not
05 due to aging, and she had to leave her career decades before she would have chosen to do so. It is not supportive to tell someone they don’t really have a problem. We try to help people understand that the best way to show their support is by being patient, accommodating us when we suggest an early dinner, and asking us how we’re doing from time to time. Over time, we each have developed new perspectives on living with Mindy’s cognitive challenges, and we do it the way we face everything else in our lives, united as a supportive couple.
Andrea, at left, and Mindy face MS together. Mindy B. Alpert is an active board member for the National MS Society’s Long Island Chapter, which honored her service in 2007 by endowing the Mindy B. Alpert Scholarship Fund. In 2010, she was elected to the Society’s National Board of Directors, where she chairs the investment committee. Andrea S. Kantor is a manager in the financial industry providing banking products and services to the nonprofit sector. She is also a certified executive coach who has run her own consulting business.
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MS connection: Summer 2013 But those of us with MS also have to learn to advocate for ourselves. We need to assert our own needs and effectively communicate them to our doctors, employers, insurers, even our families and friends. But self-advocacy doesn’t necessarily come naturally. I, for one, have always been a bit reticent to ask others to do things for me.
ADVOCACY
Be your own Best advocate By Jennifer LaRue Huget
Your whole life changes when you learn you have multiple sclerosis; mine sure did. In my case, those changes weren’t largely physical. Rather, my diagnosis caused me to reconsider my place in the world and the way I interact with other people and institutions.
The National MS Society, recognizing that many people are in the same boat, offers helpful advice at www.nationalMSsociety.org/selfadvocacy for learning to take on the role of self-advocate in the key realms of our lives, from our workplaces and schools to our families and communities. A recent legal settlement highlights the importance of self-advocacy for people with MS who are navigating the healthcare system. In the case of Jimmo vs. Sebelius (in which the Society was a plaintiff), a federal judge on January 24 approved a settlement that reaffirmed patients’ access to Medicare benefits, regardless of whether their condition improves as a result of the treatment provided.
Like many others with MS, the process of learning to live with my condition opened my eyes to the necessity for me to become an advocate — for myself and, by extension, for others with MS.
Self-advocacy doesn’t always come naturally.
I suppose I was accustomed to the concept of advocacy before I was diagnosed. As a mother I advocated for my kids, seeking the best healthcare, education opportunities and play dates possible.
A bit of background: For decades, Medicare beneficiaries, especially those with long-term or degenerating conditions and those who needed rehabilitation services, have been denied care on the grounds that those services didn’t result in improvements to their condition. For patients
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whose conditions remained stable or chronic, rehabilitative services were often deemed to be for “maintenance only,” and thus weren’t covered.
not just maintenance, is a big step in the right direction — and one that we should all be aware of as we navigate the healthcare system.
The new settlement reinforces the original intent of the law — that it’s not legal for Medicare to deny coverage on that basis. The law requires the Centers for Medicare & Medicaid Services (CMS) to revise its Medicare Benefit Policy Manual and numerous other policies, guidelines and instructions to ensure that Medicare coverage is available for skilled maintenance services in home health, nursing home and outpatient settings.
The term “self-advocacy” can sound kind of daunting; when I first heard it, I thought it meant going to Washington, D.C., to lobby for funds for MS research. I have since learned that, yes, lobbying is at one end of the self-advocacy spectrum. But at the other end of that spectrum there are many everyday opportunities for self-advocacy. Making sure you’re getting the medical attention you need? That’s self-advocacy. Reminding others that you can still do your job well, despite any limitations your MS places on you? That’s self-advocacy.
Here’s where self-advocacy kicks in. The new policy is already in force. People with MS don’t have to wait until the CMS revises its documents to gain coverage for the care they need. People who are denied Medicare for skilled maintenance nursing or therapy because they are “not improving” can appeal those decisions right away. That’s a very important form of self-advocacy. To that end, another of the plaintiffs in the settlement, the Center for Medicare Advocacy, offers self-help materials at www.medicare advocacy.org/take-action/self-help-packetsfor-medicare-appeals to help people understand coverage rules and learn how to contest Medicare denials for outpatient, home health or skilled nursing facility care. Of course, it’s important to bear in mind that the settlement doesn’t guarantee coverage; providers and people seeking Medicare coverage for treatments still have to demonstrate that the care is medically reasonable and necessary. Still, eliminating the standard that required patients to show improvement in their condition,
At the most basic level, though, self-advocacy begins with becoming informed. As I said at the start, self-advocacy doesn’t come naturally to me. But I can read and learn and discuss issues related to MS. Armed with information, I can advocate for myself with the best of ’em. Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children’s book author, she lives in Connecticut with her husband, two teenage kids and two brown dogs. Visit her website at www.jenniferlaruehuget.com. Originally published at blog.nationalMSsociety. org.
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MS connection: Summer 2013
research
Progress at AAN meeting Over 12,000 neurologists and other researchers gathered in San Diego in March to share the most up-to-date research on treating neurological diseases such as multiple sclerosis at the annual American Academy of Neurology’s (AAN) meeting. Here are a few highlights from the more than 500 MS-related presentations that focused on stopping MS, restoring function and ending MS forever.
Stopping MS STOPPING THE DISEASE
RESTORING WHAT’S BEEN LOST
Progressive MS
ENDING MS FOREVER
A small study of an oral blood-pressure medicine, Amiloride, found a reduction of brain shrinkage associated with the disease in 14 people with primary-progressive MS. Further testing in a larger study is now underway. Researchers in a large trial of Gilenya for primary-progressive MS reported good progress in setting up the trial. This is one of several ongoing large studies in progressive MS.
Professor Ebers, center, receives the John Dystel Prize from Drs. Timothy Coetzee and Bruce Cohen weeks was effective in reducing relapse rates and the risk of progression of disability. The study is continuing into a second year and the trial sponsor Biogen Idec has announced plans to apply for FDA approval later this year. Another one-year phase III trial found that injections of twice the standard dose of glatiramer acetate (Copaxone) taken three times per week were effective in reducing relapses and MRI-detected disease activity, with no unexpected safety issues.
MS Therapies
A large study in France (ENIGM) found that among 200 people who switched from natalizumab (Tysabri) to fingolimod (Gilenya), 32% experienced a relapse during the “washout” interval of 3 to 6 months when no therapy was given. The researchers concluded that switching increases the likelihood of disease reactivation and that the washout period should not be longer than 3 months.
Results of a study on peginterferon beta-1a (a new form of Avonex) designed to stay in the body longer than the standard form suggest that peginterferon injected every two or four
Results of two phase III trials of oral dimethyl fumarate (Tecfidera), approved by the FDA in March, suggest that the treatment begins to take full effect after three months’ use. This
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Restoring function
effect was sustained over the two-year span of the trials. Several presentations focused on results from extension phases of completed clinical trials in relapsing-remitting MS. To read more, visit www. nationalMSsociety.org/2013AAN.
STOPPING THE DISEASE
RESTORING WHAT’S BEEN LOST
Exploring disease activity An Argentinian study on whether vaccinations can trigger MS attacks found that yellow fever vaccines may substantially increase the risk of MS relapse; therefore, people with MS planning a trip to a region with an increased risk of yellow fever should discuss the risks and benefits of vaccination with their doctor. A small study in Louisiana found that people with higher levels of glucose were more likely to have higher levels of disability. This important lead needs more study to prove a role for blood sugar in MS progression. A few studies focused on ways to track disease progression, including one that analyzed serum samples from people with MS who were taking glatiramer acetate (Copaxone). The researchers were able to find antibody profiles that could detect those who responded to therapy and those who did not. Dr. Nicholas LaRocca of the National MS Society described efforts of the newly formed MS Outcome Assessments Consortium to accelerate development of more effective treatments for MS. They will analyze data from completed MS clinical trials and other studies and work with regulatory agencies to qualify a new outcome measure that can more sensitively track the impact of therapies on disease disability and progression in future trials. STOPPING THE DISEASE
Several studies focused on the benefits of exercise for brain function and MS symptoms such as fatigue, while others looked at how the brain can adapt to MS damage. To read blog posts by MS researchers on these and other studies, visit blog.nationalMSsociety.org.
RESTORING WHAT’S BEEN LOST
ENDING MS FOREVER
A study on CCSVI did not find a significant difference between 61 people with MS and 20 people without MS when technicians trained in CCSVI assessment used various ultrasound techniques to detect the condition. The first results of another study of controlled endovascular treatment at six months found no adverse events, but also no sustained improvement in venous outflow.
Ending the disease forever Several reports focused on risk factors for MS, including one indicating that dietary salt may stimulate activity of key immune cells involved in MS attacks. Read more at www. nationalMSsociety.org/dietarysalt.
ENDING MS FOREVER
For his extensive work on understanding MS, including the importance of genetic factors in who develops the disease and how genes interact with environmental factors, Professor George Ebers was this year’s recipient of the John Dystel Prize for MS Research, given jointly by the Society and the AAN. Read scientific summaries on the AAN’s website at www.abstracts2view.com/aan.
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MS connection: Summer 2013
Don’t Just Ride. Bike MS.
Bike MS: Country Roads Ride 2013 September 14-15, 2013
Join us for the 23rd Annual Country Roads Ride, featuring scenic road and trail routes that are challenging for the experienced rider or energetic novice! You can make a difference. Cross the finish line with us and help us finish MS!
register today! » bikeMSwv.org » 304.343.5153 To the participants,sponsors, volunteers and donors who made Tour De Vine 2013 a success Thank You!
Bike MS: Tour de Vine
Walk MS
The 25th anniversary of Bike MS: Tour De Vine has raised over $300,000 to date! 287 cyclists rode through Central Virginia’s wine country on June 8 & 9. David Osmond was the guest performer at the celebration dinner, which was followed by a candlelight ceremony. For more information on Bike MS or to assist with planning next year’s event, contact Ben at 434.971.1073.
The Blue Ridge Chapter’s 2013 Walk MS events raised over $468,000! This increase was matched by an increase in participation as well: 3,473 walkers took part in 22 community events. Volunteers are needed for 2014. Contact Annamarie at 434.971.8011 if you are interested in raising awareness and growing Walk MS in your area!
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Women on the Move
Women on the Move cochairs and table captains welcome keynote speaker Kristie Salerno Kent to Charlottesville. The luncheon raised $49,000.
The Annual MS Dinners of Champions
Charlottesville - The 21st Annual Dinner
of Champions in Charlottesville honored Joe Gieck raised $150,000. Lisa Eorio presented Joe with the Silver Hope Award.
Roanoke - John Williamson is presented the
Silver Hope Award by Harvey Brookins. The 22nd Dinner of Champions in Roanoke raised over $135,000.
Charleston - The
9th Annual Dinner of Champions in Charleston raised $91,000. Pictured are Fay Painter, honoree Mike Ross, Co-Chair Bill Raney and honoree Ike Morris.
Harrisonburg - Cheryl Dean presents honor
Dr. Loren Swartzendruber with the Silver Hope Award. The 19th Annual Dinner of Champions in Harrisonburg raised $99,800.
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MS connection: Summer 2013 It is important to remember that heat generally produces only temporary worsening of symptoms and does not cause more disease activity. The symptoms are generally rapidly reversed when the source of increased temperature is removed. With a little planning, you can minimize the effect of the heat. Incorporate one or more strategies that work best for you. • Drink plenty of fluids - preferably cool water - throughout the day. Avoid caffeine as this acts as a diuretic. • Stay in an air-conditioned environment during periods of extreme heat and humidity. • Wear cooling garments such as vests, headbands and neckbands during exercise or outdoor activity. A simple damp towel can be helpful as well.
Living with ms
Beat the Summer Heat With summer in full swing, everyone is looking for a way to cool down. People with MS might need to take extra precautions against the effects of the heat and humidity. Rising summer temperatures aren’t the only concern. Often those affected by MS experience a temporary worsening of their symptoms when they run a fever, sunbathe, get overheated from exercise or take very hot showers or baths.
• Exercise in a cool environment, such as walking in an indoor mall or working out at an air-conditioned gym. If you typically exercise outside, pick cooler times of the day, such as early morning. • Exercise in cool water (80-84) to combat heat during physical activity. Water aerobics and swimming are good options. • Pre-cool by getting into a bathtub of comfortably lukewarm water to start; continue adding cooler water during a period of 20-30 minutes. • Select light-colored loose clothing and wear a wide-brimmed hat. For information on cooling garments, call 800.344.4867. The chapter can provide assistance with the purchase of cooling products, air conditioners and fans.
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Volunteerism
college scholarship program
If you have a story to share about how MS has affected your life and want to raise awareness of MS in your community, consider volunteering as an MS Ambassador.
Mitchell Tinsley of Hurricane, West Virginia, has been selected as the Blue Ridge Chapter’s 2013 Scholarship Recipient. He will attend West Virginia University to pursue a degree in journalism.
Become an MS Ambassador MS Ambassadors are the face of the National MS Society in communities across the Blue Ridge Chapter. They raise awareness by attending health fairs, giving presentations and representing the Society at community events. Ambassadors will receive an orientation to the program. Each ambassador is asked to commit to at least three awareness opportunities each year and is encouraged to leverage local contacts to schedule presentations. To view the MS Ambassador description and complete a volunteer interest survey, visit nationalMSsociety.org/vab and click Volunteer Opportunities. You can also email or call Carrie: carrie.dahlquist@nmss.org or 434.465.6042.
Family & Social Programs
recipient announced
“Although it has been very rough growing up with this disease present in my life, I sometimes believe that it has shaped my character and my will to succeed more than anything else could have to be successful in my future,” Mitchell says about MS. “My father is my hero, and the strength he shows everyday allows me to achieve my goals and reach the standards I have set for myself and my future.” The Society established its scholarship program in 2003. In 2013, the Society awarded over $1 million in scholarships to 679 students across the country.
Breaks Retreat Recap On May 17-19, the Chapter hosted 70 participants at an educational retreat at Breaks Interstate Park. The event featured top-notch speakers David E. Jones, MD; Kathleen Fuchs, PhD; Laurie Erdman, Chronic Wellness Superhero; Mary Jo Rajek, OT; and Jerry Wistein, MS. Children got in on the fun with arts & crafts and outdoor activities. Everyone enjoyed the quintessential BINGO game on Saturday night. Special thanks to Questcor for sponsoring a portion of the retreat.
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Education
Caregiver Teleconferences Caring for someone with a chronic illness like MS can be deeply satisfying but being a carepartner can also be physically and emotionally exhausting. Join us for this series and learn how to take care of yourself while caring for someone else. The three-week series will run Tuesday nights (7-8 pm) from August 6 - 20, 2013. Each call will be conducted using a toll-free number, so you can call from the comfort of your home. Participate in several calls or just the one that interests you. Call (800) 344.4687 for more information and to RSVP or sign up by visiting nationalMSsociety.org/vab.
Information & Resources
Find it on the Web Visit nationalMSsociety.org/vab and use the left navigation bar to easily access the following information and MORE! Teleconference Recordings Access a library of recorded calls from many of our teleconference series. Listen at your convenience for information, tips and resources on a wide range of topics, from employment issues to insurance to accessibility. Self Help Groups Get an updated list of self help groups, meeting dates and locations and contact information. Did you know there is a new group meeting in Lexington, VA? Research Studies and Clinical Trials Find out about studies and trials on multiple sclerosis available in your area. Most trials are looking for participants who have MS as well as those who don’t. Educational Programs The chapter offers a variety of workshops and seminars throughout the year. You can also learn about educational opportunities presented by other organizations that might be of interest to you - topics range from affordable housing to the latest therapies to financial health. Volunteer Opportunities, Events, Latest News and MORE Learn how you can share your skills and talents as a volunteer, participate in an event or make a donation. Read the latest updates on national research and advocacy priorities.
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WEEKEND ESCAPE: September 6-8, 2013 Weekend Escape: The Brian Mason Respite Camp is an opportunity for people with MS, their families, caregivers and friends to take a break and enjoy a weekend of fun, relaxation and education. The Skelton 4-H Center on beautiful Smith Mountain Lake, our host location, is fully accessible and all activities are designed for all participants regardless of physical abilities. A staff of nurses and nursing assistants are available for all participants needing help with personal care. • Air-conditioned lodging (bring your own linens) • Friday night BINGO - Saturday night entertainment • Crafts, games, fishing, kids’ activities, educational sessions Registration opens JULY 1! Space is limited! To register, call 800.344.4867 or visit nationalMSsociety.org/vab; click on the May calendar. Cost $40 per adult, $25 per child under 18
The MS Connection is a Publication of the National Multiple Sclerosis Society Blue Ridge Chapter 1-800-344-4867
email: vab@nmss.org Virginia Office 1020 Carrington Place Charlottesville, VA 22901 (434) 971-8010
West Virginia Office 1700 MacCorkle Ave SE Suite 141 Charleston, WV 25314 (304) 343-5153
Board Chairman • Brian Mason Governance Vice Chair • Ron Tweel Treasurer • Meg Haymans Interim Chapter President • Craig Robertson Secretary • Ron Mittelman Editor • Carrie Dahlquist The National Multiple Sclerosis Society does not endorse products, services or manufacturers.
Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the contents or use of any product or service mentioned. 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 mission of the National Multiple Sclerosis Society is to mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. Please consider remembering the National MS Society in your will. © 2013 National Multiple Sclerosis Society, Blue Ridge Chapter
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Thank you to the Sponsor of MS Connection Sprague & Hixson LLP MS Connection is sponsored by Sprague & Hixson LLP, a law firm assisting people with multiple sclerosis in Social Security disability claims. Do you have questions about qualifying for Social Security disability benefits? Call us at 1-800-933-7870. The Blue Ridge Chapter serves 6,000 people with MS in western and central Virginia, the state of West Virginia, and seven counties in Kentucky. We are a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis. Contact the Blue Ridge Chapter today to learn more about all of our programs and services. 1-800-344-4867 nationalMSsociety.org/vab vab@nmss.org
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