MS Connection - Fall 2011
Updates from the Delaware Chapter of the MS Society
delAwAre ChAPTer MSCONNeCTION Moving toWArd A World free of MS FAll 2011 Are you looking for Adventure? The Sky’S The lIMIT wITh The STAPler AdveNTure FuNd Assateague National Park (pictured left). This ecology tour was professionally led and we all enjoyed learning about the flora and fauna unique to this beautiful shoreline. We even saw a number of the world famous Chincoteague wild ponies! Ever wished you could get away for the day to kayak, ski, or even sky dive? The Delaware Chapter has grants available through the Arthur Stapler Memorial Adventure fund for that once in a lifetime adventure! These funds are intended to help you and your family to participate in an activity that enriches your life with an extraordinary experience that pushes MS to the background, even if only for a little while. This fund honors the memory of Arthur Stapler, the vibrant, intense skydiver known as “the rebel,” who did so much after, and in spite of, his diagnosis of MS. Continued on page 4 Bike MS: Bike to the Bay September 24th and 25th 2 Days. 1 Unforgettable Ride. There’s still time to register to ride, sign up to volunteer or donate to your favorite team. Call (302) 655-5610 or visit www. biketothebay.org to get involved! inSide tHiS iSSue: In May a group from Sussex County embarked on a kayak adventure in We have plans for several upcoming group adventures ranging from skydiving to a theater show during the December holidays. We are planning a group trip to Inner Harbor in Baltimore on October 1st and a Six Flags trip on September 10th! There will be much more to come on these and other activities as details are finalized. Be on the look out for emails and/or postcards -- and register quickly, spots fill up fast! In fact, the skydiving adventure is already sold out. You do not need to wait for Bike MS Page 3 Thanksgiving 5k Page 4 Research Headlines Page 9 Finding a Caregiver Page 11 PreSident’S iMPreSSionS PreSident’S iMPreSSion MS=Advocacy drug Costs We want to hear from Action you on presciption As soon as we drugs coverage. Email learned of this Kate.Cowperwait@ threat, members nmss.org. of the delaware Chapter worked intensively to develop and advocate for legislation that would halt specialty tier practices in delaware, as well as study the effects that such tiers have on people living with chronic illnesses. Together with a coalition of advocates, we saw passage Awareness about important of a smaller version of this bill in the state house of representatives. delaware’s health issues Care Commission will study the effects of In April, the chapter “specialty-tier” drug costs on delawareans learned of the new, and potentially growing threat of who cope with chronic diseases. skyrocketing prescription Advancing your priorities drug costs. Simply stated, Now we need your help. your story can insurance companies are increasingly asking consumers help convince our legislators and other state officials to put a stop to specialty-tier pricing Maria McCabe to pay a percentage of drug Co-Chair, GrC costs, instead of a co-pay, for in our state. we want to hear from you about the costs of drugs in your life, how you certain types of drugs deemed to be 4th tier or currently afford your medications (private specialty tier. These so-called “specialty tiers” insurance, self pay, Medicare, Medicaid) include many of the medications needed by and how the cost of medication influences those who live with chronic health conditions, your decisions. we would also like to know such as MS. while we can understand the if you would be willing to testify about need to control health care costs, we are very concerned for our community. MS drugs can cost medication costs. Please email a note to kate. email@example.com with “drug costs” in $18,000 annually or more. And studies show that when prescription costs go up dramatically, the subject line. consumers are less likely to be able to stay on -kate Cowperthwait & Maria McCabe (cotheir regimen. chair government relations Committee) Advocacy works in many ways - for some it may be rocking a 75-mile bike ride for Bike to the Bay, for others, a letter to a Congressional representative about health care costs. here at the delaware Chapter, we promote advocacy by building awareness about important kate Cowperthwait issues, taking action, and Chapter President advancing your priorities. neW drink-Aide ProduCt If you use a wheelchair and have little or no upper body movement, with drink-Aide™ you will be able to drink water independently! drink-Aide™ consists of a FdA approved insulated water bottle, a vibration resistant flexible drinking tube and a universal clamp. The universal clamp fastens the water bottle to a wheelchair, bed or any other convenient location. This hands-free innovation allows a person with a disability to drink independently -anytime day or night. To learn more: www. drink-aide.com or call 302-655-5610 or 1-800-FIGhT-MS. 2 | JOIN The MOveMeNT www.MSdelaware.org Mardi Gras comes once a year, but why wait? O n Friday, November 18, 2011, the to an exclusive vIP area. “Our committee is delaware Chapter of the National MS Society will host its First Annual focused on making this a fun-filled event that will recruit new people to MSquerade the movement to create Ball at world a world free from MS Café live at The Join us! and hopefully become a Queen Theatre jewel event for the Society in wilmington. that delawareans look Friday, November 18th This mardi grasforward to each year. 8 p.m. - midnight inspired event will Thanks to the hard work $100 a person/$175 a couple take place from 8 of the delaware Chapter’s Tickets at www.msquerade.org p.m. to midnight. emerging leaders Council, dress is black tie this event is destined to optional with masks succeed!” said Bianca Fraserencouraged. Johnson, chairwoman of the MSquerade planning MSquerade will committee. “we hope feature live music on to draw a crowd of 300 the Queen’s stage people, so we encourage (including Philly you to join us for this Gumbo!) playing special evening, and be sure throughout the to invite your friends and evening, and will family!” include an extensive silent auction. heavy For more information or to hors d’oeuvres will purchase tickets visit www. be served along with complimentary drinks. There will be a vIP reception for $150 a person msquerade.org or call (302) 655-5610. with champagne, top shelf alcohol and access Bike MS: Bike to tHe BAy September 24 & 25th There is still plenty of time to be a part of the excitement for 2011 Bike to the Bay. Go to www.biketothebay.org to register to ride, sign up to volunteer, or donate to your favorite team! want to learn more? visit www. msdelaware.org to read stories from past participants! Team Tour de Fruit, captained by Sean Clancy, celebrated the 2010 ride at the Bike to the Bay team village and won best team tent! TOll-Free NuMBer (800) 344-4867 | 3 events 1St AnnuAl MSquerAde BAll froM PAge 1 a group activity. You can apply as an individual for that special dream you want to experience or that special trip you want to take with your family. We have had individuals MS Connection use these funds for sightseeing trips, to attend delaware Chapter, fall 2011 edition professional sporting events, visits to museums, family camping 2 Mill Rd., Suite 106, Wilmington DE trips, boating 19806 Skydiving activities, (302) 655-5610 therapeutic www.MSdelaware.org horseback riding, (800) 344-4867 “MS has presented family trips to www.nationalMSsociety.org some huge Great Wolf Lodge challenges in my and much, much CHAPter offiCerS more. Chair: Carl Hertrich, Drexel University life, yet my biggest Vice chair: Heyward Damon, Jr., DEEP, LLC Governance chair: Cheryl Heiks, Cozen O’Conner Audit chair: Maria Schaffer, Mellon Secretary: Gail Jasionowski, AAA Mid-Atlantic Treasurer: Steve Kessler, Bank of America President: Kate Cowperthwait Directors: Holly Maddams, m.p.a., c.f.r.e. Helen Serbu Debra Veenema fear is of not living. thanks to the genorosity of MS donors via the Arthur Stapler fund ...i will experience the ultimate thrill in skydiving! let the living begin!” -darnell trower, lewes, de The information provided by the Society is based on professional advice, published experience, and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The Society recommends that all questions and information be discussed with a personal physician and does not endorse products or services. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any mentioned products or services. Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve the quality of life for many people with MS. The Society’s medical advisors recommend that people with MS talk with their health-care professionals about using these medications and the effective strategies and treatments to manage symptoms. Then, call the Society at (800) 344-4867. Or visit www.nationalMSsociety.org. For more information, visit our website www. msdelaware. org. Or call us at 302-655-5610 or 1-800 FIGHT MS. thursday, november 24 Sign-in begins: 8:00 A.M. PnC Bank Center 222 del Ave., Wilmington uSAtf-cert. 5k & 10k, kiddie fun run, 5k walk Plus recyclable edjah Chip timing System motivation, and makes us less likely to adhere to treatment,” he said. “I encourage people to let go of the worst-case scenario and continue to live life, go to work, enjoy relationships and take some time to get used to having MS. Loved ones can help by giving their diagnosed friend or family member to deny and therefore denial is not a river in permission cope.” egypt. And it actually has a place in helping people absorb a diagnosis of MS. Denial allows people to take time to get used to a new situation and not focus on fears of what might happen down the road. “Denial gets a bad rap,” said David Rintell, EdD, a psychologist at Partners MS Center at the Brigham and Women’s Hospital in Boston, Mass., “but it can be very useful and is sometimes necessary.” Denial is a very basic defense mechanism, explained Barbara Giesser, MD, clinical director of the UCLA MS Program. “In the process of adapting to chronic illness, denial can be a useful first step in the process of acceptance.” In fact, said Dr. Rintell, people who are unable to use denial may become disabled by anxiety. “Hopelessness is destructive—it reduces However, said Dr. Giesser, denial doesn’t work long-term. “You have to move past denial in order to treat and make plans,” she cautioned. “If instead of accepting your diagnosis, you believe the doctors made a mistake, you might not avail yourself of appropriate therapy for both disease and symptom management.” To develop a sensible perspective, it’s important to get as much information as possible. “Find a neurologist you can work with, who allows you to be active in your own care,” Dr. Giesser advised. “It’s less scary when you feel empowered.” Dr. Rintell also suggested speaking with other people with MS or a professional with relevant experience. “After the initial shock, most people learn that MS can be a difficult illness, but they realize that they will be OK with it. Being optimistic turns out to be realistic.” TOll-Free NuMBer (800) 344-4867 | 5 neWly diAgnoSed tHe BenefitS of deniAl reSeArCH MediCAre “iMProveMent StAndArd” CHAllenged For many people with MS, physical, speech or occupational therapy may be essential in preventing their abilities from deteriorating. However, many of these folks have been denied medically necessary rehabilitation services that they are eligible for through Medicare because of something called the “improvement standard.” The standard actually violates Medicare’s own official regulations, which say that “the restoration potential of a patient is not the deciding factor” for coverage and that therapies that help prevent physical and cognitive deterioration or maintain optimal functioning, even if improvement is not expected, are to be covered. This past January, a classaction lawsuit was filed in the U.S. District Court in Vermont, with the National MS Society as the first national health organization named plaintiff, and subsequently joined by the Alzheimer’s Association, United Cerebral 6 | Palsy, Parkinson’s Action Network and Paralyzed Veterans of America. The lawsuit seeks to assure that a person’s “improvement” status is not a basis for denying ongoing therapy services. The outcome will be reported in “Government News” at www. nationalMSsociety.org/ advocacy. PotentiAl Anti-SPAStiCity treAtMent BooSted By tHe SoCiety’S fASt forWArd ProgrAM Key early-stage research on an oral treatment for spasticity, the painful and debilitating muscle spasms associated with MS, is underway at Canbex Therapeutics. The UK-based company received a $2.8 million Translation Award in March, 2011, from the Wellcome Trust, a global charitable foundation, to support this research. The work is being led by David Baker, PhD, an MS investigator under the National MS Society’s Promise: 2010 initiative. The Canbex spasticity program has been supported by the Society’s Fast JOIN The MOveMeNT www.MSdelaware.org Forward initiative to move this potential therapy toward clinical trial faster. WelCoMe to digitAl MoMentuM! Momentum, the National MS Society’s flagship magazine, is now available online at www.nationalMSsociety. org/magazine in a fully digital edition with plenty of bonus features. It includes all content from the print edition, including advertisements, and allows you to click on live hyperlinks, comment on articles and respond to reader comments, download whole issues as PDFs, print pages and share articles via e-mail, links or by posting to social networks. Digital Momentum is also available for free from iTunes and the Android Market. The app includes the magazine, the latest Society news, our Twitter feed and videos. CHAPter neWS Meet tHe 2011 MS SCHolArSHiP reCiPientS Congratulations to our 2011 Scholarship award recipients and best of luck as you pursue your academic dreams! Briana Boyd Magnolia, de Maria Fencer wilmington, de Marisa Campagne New Castle, de Courtney hahn Camden, de Shelby Cole dover, de Melissa Spinden wilmington, de Alysha Conley Camden, de Nyesha Smith New Castle, de kelsey Traunero Newark, de renewal scholarships also went to rachel and Michelle Markiewitz, students at the university of delaware. MS Scholarships are awareded to highly qualified high-school seniors who have been diagnosed with MS or who have a parent with MS. 2012 scholarship applications will be available on October 1, 2011 at www.nationMSsociety.org/scholarship. MS Pro-AM golf tournAMent feAturing tHe $1 Million SHoot-out Almost 100 golfers raised over $100,000 at the MS Pro-AM Golf Tournament on June 27, 2011. Special thanks to the Golf Channel, PGA and all participants for your generosity! Pictured left: hayward damon, Chairman of the Golf Committee and ryan kidwell, executive director irector of Golf at white hite Clay Creek Country Club WAlk MS: BAyWood greenS Thanks to 370 walkers raised who $37,125 dollars was raised for the delaware Chapter at Baywood! The top fundraising team was Team Zoom Zooms (raising $13,740), captained by Monroe Colvett. The top individual fundraiser was kay Oesterling (raising $6,279). TOll-Free NuMBer (800) 344-4867 | 7 triButeS triButeS & MeMoriAlS Thomas & Mary Ellen Ball Law Offices of D. Stephen Parsons Energy Products Distribution April 1, 2011 – June 30, 2011 The Judges of the Justice of the in memory of… Peace Courts in Kent County Eric & Sharon Ralph William C. Stewart Michael Jahnigen Mr. & Mrs. C. Libertella ivor Henry goodge Kenneth & Cheryl Jeanes elaine trout Dolores Stewart tom robinson Nancy Sills Aline Collins M. Carolyn & John Knowles Col. robert A. Smith E. Philip & Marylee Turcotte Lambert Funeral Home Mar Cor Purification lorraine Harvilla Martha Long Pat Muzik George Kellerman Tory Kitchell Paul Sabitini Saundra & John Watkins Carmela Clemente Rosalind & Bill De Cinque Anthony Merendino Mr. & Mrs. Stanley Fertel Mena & Tony Merendino Joan Zappala Pauline Kidd Joseph & Anna Zappala Joanne & Russ Bassett Doris Massari Ben & Louise Giliberto Jane Sickler Kevin & Joyce Booth Deborah Iacovone Anthony Carbone Samuel & Linda Picken Mr. & Mrs. Benjamin De Cinque John & Dottie Evans Fran Plummer Francis & Stella Iacovone Anthony & Judith Clemente Edwin & Irene Wilson Sue & Ralph Petruccelli Robert & Diane Iacovone SAM’S CluB rAiSeS neArly $1.2 Million dollArS to Benefit SoCiety Sam’s Club raised nearly $1.2 million for the National MS Society through grassroots fundraising techniques that included donation jars, caramel apple and hot chocolate sales, and MS bracelet and sneaker sales in club parking lots. On behalf of the National MS Society and people with MS everywhere—thank you Sam’s Club! 8 | JOIN The MOveMeNT www.MSdelaware.org Peggy Lucchesi Shirley D. Sorantino & Children trudy Meserve Bryan A R Vandepoele Sharon & Richard Evers Linda Bierley Juanita Nagely Cathy & Bob Cassato Jo Lee Callaway Bill & Betty Wier ruby evans Janet & John Ray Delta Sigma Theta AK Alumnae Chapter in honor of Mary B. Ball Susan & Terry Wrightson in honor of the marriage of Beverly Jane futrell & rodman Jesse denison Gene & Carol Mayhew in honor of the marriage of Paula Janssen & greg greene Joan Rust & Michelle Pena in honor of Bill & Judy McCabe’s 60th anniversary Mike & Maria McCabe HAve old Cell PHoneS or SMAll eleCtroniCS? Bring them to the Delaware Chapter office or to an upcoming events (look for the electronics drop-box). The chapter receives a small donations for each item recycled, help spread the word about this simple way to join the movement! ProgrAMS extrA! extrA! MS HeAdlineS here are some recent headlines in the MS community: • MS Trial Alert: Drug Study at NIH recruiting People with Secondary-Progressive MS. • Neurologists Begin to Build Consensus on Managing Pediatric MS and Similar disorders. • Study of Large Population in Taiwan Finds Increased risk of developing MS following an Attack of herpesZ oster. to read the full stories at www.nmss.org and click on the latest news section. delAWAre eMergenCy PrePAredneSS regiStry uPCoMing ProgrAMS oct. 1 – trip to Baltimore’s inner Harbor & Aquarium oct. 15 - Statewide family Picnic in dover The State of Delaware recently relaunched the emergency Preparedness voluntary registry for citizens who have special needs. Local and state emergency planners and first responders will use this information to better serve you in the event you need to dial ‘911’. oct. 22 – Wilmington & Western railroad ride november – Best Caregiver essay Contest in honor of national family Caregiver’s Month november 19 – Caring Hands Service day december 5 – Annual “Pump it up” Bounce Party EVEN IF YOU REGISTERED UNDER THE To find more information, and a full list of chapter support OLD SYSTEM, YOU WILL NEED TO REGISTER AGAIN. To join the registry: groups, please visit www.msdelaware.org and click on the http://www.de911assist.delaware.gov/ programs tab or call (302) 655-5610. TOll-Free NuMBer (800) 344-4867 | 9 living WitH MS Wii And Me By JONAThAN ruBIN Eighteen years ago, when I was 24, I lost something very important. I lost the ability to compete. I had played competitive sports my entire life. So much so I never thought what life would be without them. They were just part of me. But my competitive ability was taken away by my first major MS attack, one that left me dizzy, weak and bedridden (temporarily) for the first time in my life. I was not great, but always good, always in the game, ready to play, an able teammate. Soccer was my primary passion, with tennis following close behind. I was in every league, in every pickup game, whenever I had the opportunity to join, and would spend hours and hours just running around an immense field overlooking the Pacific Ocean chasing and kicking a small white ball. It was pure freedom. It wasn’t until the winter of ’92–’93 that I realized just how important it was to me. After my first MS attack, it took me five months to get back on a basketball court and a year to even kick a soccer ball (my legs were heavily affected). It was probably 18 months before a friend talked me into trying a pickup soccer game. I was a little slower, a little shakier, a little weaker, but it was soccer, by golly, and I loved it. However, after many ups and downs and all arounds, my MS has shifted into secondary-progressive. I now walk with a cane and can only imagine playing in an actual soccer match. Which brings me to the present, to this Christmas actually, when my family and I bought the Wii Fit Plus game station from Nintendo. Thanks to Wii, I can play golf, and I am once again a champion tennis player. I can groundstroke endlessly, connect on every overhead slam and whip forehand winners crosscourt. I can serve big, rush the net, and still backpedal to the baseline. I can sweat like a pig again. I am, in a sense, complete. My experience reminds me of the scene in the movie Avatar where the wounded veteran, who has lost the use of his legs, has his mind put into the body of an avatar. He walks a few trembling steps, and then starts running and running and running. He will not stop. It is impossible to imagine what it is like to not be able to run until you can’t. I haven’t yet tried soccer and basketball on the Wii. But I’m ready to start the PGA tour with Woods and Mickelson. Who wants to caddy? Jonathan Rubin, who lives in Madison, Wis., is currently ranked 5,024 in the world on Wii Grand Slam Tennis and hopes to be #1 by spring. neW APP for PeoPle living WitH MS! The Real Talk Real Answers Mobile Application is designed to give real answers to questions about living with multiple sclerosis. To learn more, visit nmss.org. 10 | JOIN The MOveMeNT www.MSdelaware.org 3. Have him or her agree to give one month’s notice—and do the same. 4. Don’t hire an alcoholic. (I expect my caregivers to be clean and sober in my home.) 5. Keep food separate. (Sometimes we eat together, sometimes we don’t.) 6. The caregiver’s room should hold all the caregiver’s goods. (I have no room for storage and nothing should hinder my movement in my home.) 7. No sleepovers and no inviting friends over without permission. (I need night coverage and that is non-negotiable.) By Al TAINSky Respect, honesty, compassion, compatibility and civility are core ingredients of a successful caregiving relationship. But a sense of humor and a soupçon of soul don’t hurt either. 8. Keep your computer and printer for your personal use only. 9. If a caregiver steals, lies or cheats, make a plan for coverage before firing the miscreant, so you’re not left on your own. I was diagnosed with MS in 1987, but I trace the disease back to the 1950s and a summer so hot it melted the tar on Anderson Avenue in the Highbridge section of the Bronx. 10. Don’t surrender control of your life to anyone. Need help? Call a friend, call a relative, call the Society, call the closest Independent Living Center and if necessary call the police. For nigh on 20 years, I have hired, fired and lived with caregivers. I call my current live-in caregiver Mr. Wizard. His technical and computer skills are remarkable. He has a sense of humor and he taught Sunday school for about 14 years. His younger sister is developmentally disabled and the love he feels for her shows a man of substance. Al Tainsky was a professional journalist and sometime writer of comedy for television when he was diagnosed with MS 24 years ago. He continued to live independently and to write articles for Momentum magazine, Real Living with MS, and other disability publications. He died of a heart attack in February shortly after completing this article. We will miss his smarts and his spirit. Here are a few of my tips to finding your own Mr. Wizard. 1. Have applicants supply the names, addresses and phone numbers of three personal or work references. 2. Hire someone with a clean driving record. Wondering how to afford a caregiver? Call 1-800-344-4867 to talk to an MS Navigator®. Also go to nationalMSsociety.org for the brochure, “Hiring Help at Home.” TOll-Free NuMBer (800) 344-4867 | 11 living WitH MS ten tiPS for Hiring HoMe HelP Non-Profit Organization u.S. Postage PAId Permit #246 wilm, de delaware Chapter 2 Mill Road, Suite 106 Wilmington, DE 19806 AnnuAl ConferenCe 2011 AnnuAl ConferenCe And BerniCe SCHACter reSeArCH SyMPoSiuM SAve tHe dAte! Saturday, november 5, 2011 John h. Ammon Medical education Center Christiana hospital Newark, de $10/person - scholarships are available keynote SPeAker: dr. elliot Frohman ellIOT M. FrOhMAN, M.d., Ph.d., FAAN keynote Speaker Professor of Neurology & Opthalmology Irene wadel & robert Atha distinguished Chair in Neurology kenney Marie dixon Pickens distinguished Professor in MS research director, MS Program and MS Clinical Center university of Texas Southwestern feAturing A PAnel diSCuSSion WitH: dr. elliot froHMAn, Md; JASon SilverSteen, d.o., Multiple Sclerosis Specialist Christiana Care Neurology, Assistant Professor of Neurology, drexel university College of Medicine; SCott neWSoMe, d.o.; Assistant Professor of Neurology, The Johns hopkins Multiple Sclerosis Center; MAureen MeAly, rn, BSn, Program Manager, The Johns hopkins Transverse Myelitis Center. go green And HelP uS SAve Money! To receive the newsletter electronically, call (302) 655-5610 or email firstname.lastname@example.org and provide your email address. Free mailing for blind and handicapped delaware Chapter 2 Mill Road, Suite 106 Wilmington, DE 19806 AnnuAl ConferenCe 2011 AnnuAl ConferenCe And BerniCe SCHACter reSeArCH SyMPoSiuM SAve tHe dAte! Saturday, november 5, 2011 John h. Ammon Medical education Center Christiana hospital Newark, de $10/person - scholarships are available keynote SPeAker: dr. elliot Frohman ellIOT M. FrOhMAN, M.d., Ph.d., FAAN keynote Speaker Professor of Neurology & Opthalmology Irene wadel & robert Atha distinguished Chair in Neurology kenney Marie dixon Pickens distinguished Professor in MS research director, MS Program and MS Clinical Center university of Texas Southwestern feAturing A PAnel diSCuSSion WitH: dr. elliot froHMAn, Md; JASon SilverSteen, d.o., Multiple Sclerosis Specialist Christiana Care Neurology, Assistant Professor of Neurology, drexel university College of Medicine; SCott neWSoMe, d.o.; Assistant Professor of Neurology, The Johns hopkins Multiple Sclerosis Center; MAureen MeAly, rn, BSn, Program Manager, The Johns hopkins Transverse Myelitis Center. go green And HelP uS SAve Money! To receive the newsletter electronically, call (302) 655-5610 or email email@example.com and provide your email address.