A Bold, New Look for the MS Society

Spring/2007 Women Against MS (WAMS) Research Highlights Let Go and Manage Your Life Is Aquatherapy Magic? Calendar of Upcoming Events

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Mid-Jersey Chapter The National MS Society... One thing people with MS can count on.

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A Bold, New Look for the MS Society see page 20

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SPRING

2007

Publication of the National Multiple Sclerosis Society Mid-Jersey Chapter 246 Monmouth Road Oakhurst, NJ 07755 Tel: 732-660-1005 Toll Free: 1-800-344-4867 Fax: 732-660-1338 www.nationalmssociety.org/njm Dr. Dan Messina Chair Anthony DiDomenico Vice Chair Robert Wass, Jr. Secretary Mike Pawelczak Treasurer Scott Erickson Past Chair Mike Elkow President Gina Murdoch Director of Development Allison Cerco Director, Chapter Programs and Services Bonnie Bardinas PR Consultant Jill Karatz Newsletter Coordinator Regina Services Corporation Design & Printing

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 use of contents 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 National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS.

CHAIRMAN’S MESSAGE

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oday the Mid-Jersey Chapter stands mission driven, fiscally sound and strategically focused to meet the needs of our MS Community that is led by a wonderful group of volunteers and board members, as well as solid leadership team under the direction of our President and Chief Executive Officer, Michael Elkow. As the incoming Chairman of the National MS Society’s Mid-Jersey Chapter, I would like to take this opportunity to introduce myself. Residing in Staten Island, NY, with my wife and two children, I presently serve as the Senior Vice President and Chief Operating Officer of CentraState Healthcare System in Freehold. Prior to coming to CentraState, I was the Chief Operating Officer at Monmouth Medical Center, and the Vice President of Operations at Hackensack University Medical Center. For the past six years, I served on the board of the MS Society’s Mid-Jersey Chapter, recently as Vice Chair and now as Chairman. It’s very rewarding for me to be involved in a program and with a mission that is so personal to me, having grown up in a family that was directly affected by MS. All of the programs that we set up, and everything that my colleagues and I develop has a direct tie to improving the lives of those with MS. I’m happy that I can make some contribution toward that goal. Having experienced first hand the challenges of MS with my mother, who has had MS for the past 50 years, please know how deeply committed I am to creating ways to minimize these effects. My family, especially my father, remains deeply committed to caring for my mother. Her chronicprogressive MS has certainly affected her physically. However, she remains a very positive person.

This disease has given my family a tremendous appreciation for the critical things in life, such as family, friends and maintaining that positive outlook. We’ve learned to take each day at a time. MS is not like most other diseases that you can treat and move on. When living with MS, either personally or through a loved one, it often feels like you just cannot clear your head. But it also gives you a fresh look at life and a new appreciation for the things that are truly important.

Many thanks and appreciation to Mike Elkow and the Board of Trustees, as well as the entire Mid-Jersey MS family, for having the confidence in me to work side by side with each of you to help further the mission of our wonderful organization. I look forward to my term as Chairman and please remember— my door is always open. Warm regards,

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oing forward, I would like to ensure the continued success of our MS Centers, at CentraState and Robert Wood Johnson, as well as the future growth Daniel J. Messina, Ph.D., FACHE, LNHA and development of CentraState’s upcoming Chairman MS Wellness Program in its new Fitness and National MS Society’s Mid-Jersey Chapter Wellness Center slated to open in the fall. Additionally, I would also like to keep a steady pulse on the needs of our constituent of patients, their families, their significant others and friends. This disease does not just affect the person living with MS, but rather the entire social and family unit surrounding that person. We would like to maintain a high level of responsiveness to the needs of all those affected and to continue to meet the mission and vision of the MS Society. We would like to be especially responsive to the services (both social and medical) we might provide on a personal level to improve the quality of life of those living with MS. I would also like to maintain the Chapter’s connection with the most current thinking and the latest clinical options for medical care and research.

© 2007 National Multiple Sclerosis Society, Mid-Jersey Chapter

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Toll-Free Number: 1-800-344-4867

Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007

WOMEN AGAINST MS

The 2006 Women Against Multiple Sclerosis Luncheon was held on November 15th at The Palace at Somerset Park in Somerset, NJ. This WAMS luncheon nearly doubled the previous year’s total by raising over $170,000 and boasting an impressive attendance of 418 people.

WAMS-North 2005& 2006

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n its first two years, the Women Against Multiple Sclerosis Luncheon has raised over $250,000. This incredible accomplishment has been achieved at the hands of the WAMS Committee and the extraordinary work of its co-chairwomen Linda Greenfield, Judy Hoffman and Marlene Volpe. WAMS is a nationwide education and fundraising program that was founded in 1999. WAMS events are fundraising lunches that create an inspiring, motivational and empowering environment. WAMS creates a social environment for like-minded people to Zoe Koplowitz gather, learn about multiple sclerosis, and raise funds to fight MS while sharing the joys of a fine lunch. The proceeds from WAMS helped support local programs and services for people with MS and their families. A portion of the proceeds was also donated to Robert Wood Johnson University Hospital to help fund a new MS Center.

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The first luncheon was held on November 1, 2005 at Jasna Polana in Princeton, NJ. The event was a huge success with over 100 silent auction items and a full house of 265 guests. The luncheon raised over $88,000, an incredible amount for a first year event. The keynote speaker was Zoe Koplowitz, the celebrated author of “The Winning Spirit–Life Lessons Learned in Last Place.” Although Zoe lives with the daily challenges of both multiple sclerosis and diabetes, she has successfully completed a total of nineteen marathons, all in last place. Zoe’s accomplishments have become a powerful reminder that “The race belongs not only to the swift and the strong, but to those who keep on running.” It is an ultimate truth both on the marathon course and in every day life. We extend our gratitude to the sponsors of the 2005 WAMS luncheon – Sovereign Bank, Fairlawn Jewelers, Greenfield Jewelers, Mr. and Mrs. John Hoffman, Mr. and Mrs. Paige L’Hommedieu, Old Bridge Sayreville Rotary, PSE & G, Wilentz, Goldman & Spitzer, Dr. and Mrs. Anthony Volpe, Verizon and many more.

Toll-Free Number: 1-800-344-4867

Mr. and Mrs. Stanley Ferman, Greenfield Jewelers, Dr. and Mrs. Anthony Volpe, and Wilentz, Goldman & Spitzer. Our Supporter Sponsors included: Amboy National Bank, Investors Savings Bank, New Brunswick Development Corp., Old Bridge Rotary Senior Housing, Mr. and Mrs. Thomas Santangelo, This event featured a silent auction with The Weiser Philanthropic over 230 items. The Keynote Speaker this Fund, Verizon, Amper, year was Mary Moulds. Politziner & Mattia, and Mary was diagnosed Mason, Griffin & Pierson with MS in 2001. In PC. L’Oreal USA was very 2003 Mary organized a generous in their donation Michael Amante MS Walk team which of gifts for all of the lunchto date has grown to eon guests, as was Roberts Floral’s in their over 100 members and donation of the exquisite floral arrangehas raised over $30,000 ments for the event. for the Mid-Jersey Chapter. In 2006, Mary Mary Moulds Mrs. Mercer County 2006 took her fundraising one step further by participating in the MidJersey Chapter’s “Coast the Coast” MS 50 mile Bike Tour. Mary is a strong advocate for the Chapter and speaks for the society at newly diagnosed seminars and acts as a mentor when new patients need a person to talk to. Mary believes that her life is not Dr. Lacy, Judy Hoffman, Linda Greenfield and Dr. Jalbut about limitations, but rather possibilities! Also joining us this year was renowned Save the date for the 2007 WAMS North vocalist Michael Amante, who provided the Luncheon on October 10th. Please join us entertainment for the luncheon. in making this year’s Women Against Multiple Sclerosis luncheon even more We would like to extend a very special successful. For further information on thanks to all of the sponsors for the 2006 WAMS, please contact Marie Trezza, luncheon. Our Gold Sponsors included: Manager MS Bike Tour and Special Projects Mr. and Mrs. John Hoffman, Mr. and Mrs. Paige L’Hommedieu, PSE&G, and Sovereign at 732-660-1005 or Bank. Our Silver Sponsors included: Chubb [email protected]. & Son, CME Associates, Fairlawn Jewelers,

Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007

A DVO C AC Y U P DAT E

Advocacy 2007: On The Road By: Mike Burke, MS Advocate and member of the Mid-Jersey Chapter’s Board of Trustees

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n Sunday, March 11, Allison Cerco, Director of Programs and Client Services for the Mid-Jersey Chapter, and I traveled to Washington, D.C. for the National Multiple Sclerosis Society's annual Public Policy Conference. This four-day conference at the Grand Hyatt Hotel was attended by over 350 staff and volunteer advocates from across the country. Dr. Marina Corodemus, a new member of our Board of Trustees, and Mike Elkow, MidJersey Chapter President, joined us in representing our chapter. Also attending the conference were chapter presidents, board members, volunteers and staff from the other New Jersey chapters, which gave a full representation of the NJCAN in support of MS advocacy on federal issues. The focus issues this year included legislation concerning the following: removing the current “in the home” Medicare restrictions on coverage of mobility devices, requesting that Congress support a $15 million appropriation to the Congressionally Directed Medical Research Programs (CDMRP) for

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MS research (these dollars would be used to supplement the decrease in funds for MS research by National Institute of Health in the coming budget year), urging Congress to support the Stem Cell Enhancement Act of 2007 (H.R. 3 and S.5) at all levels of the legislative process, and urging Congress to support the Access to Life-Saving Medicine Act (H.R. 1038) to provide a statutory pathway for approving safe, effective and lower-cost versions of biotech drugs. After two days of extensive discussion, review and issue-focused seminars, the culmination of the conference was a trip to Capital Hill. Throughout the day, visits were conducted with both Senate offices as well as with the offices of the13 members of the House of Representatives representing our great state. During the meetings, there were dialogs about advocacy issues and information packets highlighting those issues, as well as pertinent information about the activities of each of NJ's three chapters, which were left with representatives of the respective offices. Upon returning from Capitol Hill, we followed up with a discussion on the highlighted issues as well as many others that were relevant during the year in review. It is through these discussions that we generate our chapter’s advocacy efforts on the federal issues affecting the lives of those of us living with MS. Please direct comments, questions, or offers to volunteer to Allison Cerco at the Mid-Jersey Chapter, 732-660-1005 or [email protected], or Mike Burke, 732-846-2728 or [email protected].

Toll-Free Number: 1-800-344-4867

A DVO C AC Y U P DAT E

The MS Movement Needs Activists! NEW VIDEO SHOWS WHAT IT TAKES IF

Senators Barack Obama (D-IL) and Gordon Smith (R-OR) and Representative David Price (DNC) explain how important MS activists are in helping to educate legislators like themselves on important issues. Sen. Barack Obama

GETTING INVOLVED WITH PUBLIC POLICY

issues seems out of your league, a new video from the Society shows that pitching in to make changes that benefit people with MS is easier than you think. “From Advocate to Activist” features MS activists from across the country who talk about their experiences, their successes and how getting involved to help themselves and others has enriched and changed their lives. Their stories reflect how one person can make a difference and that even small efforts can make big waves when many people participate.

Take a stand Join the MS Action Network on our Web site at nationalmssociety.org/ActionNetwork. You’ll receive an Action Alert via e-mail when important legislation needs a quick response. It’s easy to call or e-mail your representatives in Congress, sign a petition, or visit your district offices. If you don’t have e-mail, call us to get involved: 1-800-344-4867. Rep. David Price To see the video, go to nationalmssociety.org/advocacy, or call us.

Sen. Gordon Smith

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SPRING2007

RESEARCH

“BENEFIT” Study Adds to Data Suggesting Early Treatment May Help Delay MS

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tudies suggest that early treatment with one of the MS disease-modifying drugs can help to “put the brakes” on MS. In many people, early use of Betaseron, Avonex, Copaxone, or Rebif decreases the frequency and severity of attacks, reduces the number of new lesions in the brain or spinal cord, and possibly reduces future disability.

A new report on the BENEFIT study, published in the October 2006 issue of Neurology, has shown that Betaseron may delay the onset of MS in people with a high risk for the disease. The BENEFIT study followed 468 people who had experienced a single, MS-like attack, such as inflammation of the optic nerve or numbness on one side of their body. Many who experience such attacks— called CIS, or “clinically isolated syndrome”—will later be diagnosed with MS. They are considered at high risk for the disease.

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The BENEFIT study participants received either a standard dose of Betaseron or an inactive placebo for up to 24 months or until MS was diagnosed. Those taking Betaseron had a 50% reduction in risk for developing definite MS, and those who were later diagnosed with the disease were diagnosed an average of one year later than those taking placebo. Based on these results, Betaseron’s sponsor, Schering AG, filed an application with the FDA for use of Betaseron in people with CIS in the U.S. The FDA approved the application in October.

Clues to Limiting Nerve Damage MS attacks nerves and myelin, the insulation that covers nerves. Finding treatments to protect nerve tissue is crucial, as damage to nerves is what causes permanent disability in MS. In a new study, partly funded by research grants from the National MS Society and the National Institutes of Health, researchers at Children’s Hospital Boston found that treatment with nicotinamide, a form of vitamin B3, prevented further breakdown of damaged nerve fibers. The study was done in mice with an MS-like disease called EAE. The researchers had shown previously that an enzyme called NAD decreases when nerves break down in mice. Injections of

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RESEARCH NAD or nicotinamide—which can be turned Old drugs, new purposes The concept of nerve loss is not a new one into NAD—prevented injury to nerves. In the current study, the team injected nicoti- to neurologists. We also know from lab namide into mice with EAE. Treatment suc- studies that nerve loss is reversible. In fact, there are repair or protective medications ceeded in reducing inflammation and out there that were tested for Parkinson’s, myelin destruction, and also protected nerves from breakdown, including those that Lou Gehrig’s (ALS), and others. They had limited success, but those diseases are diaghad already lost their myelin sheaths. Mice given the highest doses of nicotinamide had nosed in older people who have significant damage. We diagnose MS much earlier, the fewest neurological symptoms. when people are younger and healthier. This hopeful clue requires more research. These drugs may work better for them. According to a press release from Children’s There are other drugs approved for other Hospital, the nicotinamide doses used in conditions that also merit testing in MS. these mice would translate into very high doses for humans. High intake of B vitamins If your target drug is already approved for something else, you can go directly to can produce severe side effects in people. what’s called a Phase II-B clinical trial. That Progress will depend on the outcomes of saves years and years of safety testing. safety studies. Which old drug? At Johns Hopkins we have a library of some 10,000 drugs and a three-part system for looking at them. First we identify those with the most promising properties. Then we ask about safety and which ones can be given as pills. Parallel with that we have to Dr. Calabresi, of Johns figure out how we’re going to know if a Hopkins University drug really makes someone better. It would School of Medicine, heads be great if we could just give something and a multidisciplinary team people would get up and dance again. But focused on the repair of nerves aren’t like that. They take quite a nerves damaged by MS. while to grow out and do their thing. At the The goal is restoring function—returning very least it would take 6–12 months for abilities that MS has stolen from legs and nerves to start functioning better or become arms and hands. more normal. Dr. Calabresi’s nerve repair research is funded by the Society’s Promise: 2010 pro- We need to know what’s happening sooner. If a drug doesn’t work, we want to try gram. The following is from an interview with Dr. Calabresi conducted late last year. another on our top 10 list. We’re going to test some of these drugs in people in the next five years. We may even do it in three.

Moving Forward on Nerve Repair

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SPRING2007

RESEARCH

International Group Finds Extensive Myelin Repair Even in Elderly When myelin—the fatty coating that insulates and protects nerve fibers—is damaged by MS, messages from the brain can misfire or be lost. This, in turn, can affect anything from vision to physical movement. Scientists believe that when damaged myelin is repaired, function may return and that myelin repair (called “remyelination”) also protects the nerve fibers themselves from damage. A recent study by an international team suggests that a substantial amount of natural remyelination can occur in most types and stages of MS. It is not confined to younger, healthier people, or to people who do not have progressive disease. About the study The researchers examined autopsied brain tissue from 51 people who had lived with MS, including people with relapsing-remitting, secondary-progressive, and primary-progressive disease as well as some whose MS type was unknown. The tissue samples were analyzed for signs of myelin damage and repair using a variety of high-tech microscopic, staining and labeling techniques. New Myelin in Progressive MS The researchers were surprised to note that, in about 20% of the samples studied, remyelination was extensive, including in those with progressive forms of MS. The amount of remyelination ranged from

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sparse to nearly complete repair—and, another surprise, they found more extensive remyelination in people who had died later in life and/or those who had had MS for the longest period of time. No link was found between the extent of repair and the age at onset, gender, or type of MS. John Richert, MD, Vice President of Research and Clinical Programs for the Society, told MSConnection that more research is needed to find out why some people experienced highly efficient myelin repair while others did not. “The findings of variable rates of remyelination will be taken into consideration as we design future clinical trials of ways to stimulate myelin repair,” Dr. Richert said.

RESEARCH

Study Refutes MS Blood Test Prediction Scientists world-wide have been searching for ways to predict if a person will get MS. In 2003, Austrian researchers at the University of Innsbruck thought they had found a way. The Austrian team claimed to have found levels of two antibodies— anti-MOG and anti-MBP—in blood samples taken from people with CIS that predicted who would later be diagnosed with MS. CIS stands for “clinically isolated syndrome,” meaning a single neurological attack. Not everyone who has such an attack goes on to develop MS. But a new, much larger study by Swiss and German researchers, using methods similar to the earlier study, found no correlation between anti-MOG and antiMBP levels in blood samples and a later diagnosis of MS.

The study, published in the December, 2006 issue of Brain, was conducted by Drs. Peter Patrikios, Hans Lassmann, and others of the Medical University of Vienna and financed by the National Institutes of Health and the European Union, with additional support from the National MS Society’s MS Lesion Project (led by Dr. Claudia Lucchinetti of the Mayo Clinic).

Toll-Free Number: 1-800-344-4867

The new study was published in the January 25, 2007, New England Journal of Medicine. “While the news this time is not what we wanted to hear,” said Dr. John Richert, Vice President for the Society’s Research and Clinical Programs, “we’re still hoping to find ‘biomarkers’ that one day will accurately predict the onset or future course of MS.”

If you are a Mom or Dad who has Multiple Sclerosis, we have a resource for you!

Keep S’myelin is a free newsletter designed to help kids ages 5 to 12 learn how to live and be comfortable with MS by providing accurate information in a format that is easy and fun to read. Puzzles, games and a parents section are included, too! Keep S’myelin will surely keep both kids and parents smiling and informed about MS. For more information, call the National MS Society at 1-800-344-4867 or visit www.nationalmssociety.org

Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007

LIVING WITH MS

Let Go-and Manage Your Life

Anger is usually a secondary emotion. It comes in the wake of other more painful feelings—hurt, fear, or powerlessness. Anger actually protects us from those painful feelings, but until they are addressed, we generally continue to be angry. Ask yourself:

by Nancy Law

• Is something scaring or hurting me? • If so, who or what? • Do I feel helpless or powerless?

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e have a tendency as human beings to hold on to things. We hold on to disagreements we have had with people; we relive injuries and insults. We can carry those bad feelings with us a long time, and this causes stress long after the stressful situation is over.

photo credit: Bill Stanton

Anger and MS can sometimes go hand in hand. Some of the signs that anger may be stressing you: • • • • •

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Feeling irritable much of the time Finding little things bothersome Yelling or raising of your voice frequently Feeling sarcastic Saying things you later regret.

Confronting and talking to people who have hurt you can sometimes resolve the issue. Sometimes, it’s just best to move on. Dealing with things that make you feel fearful or powerless generally requires action. For example, checking into insurance options or talking with your employer about workplace accommodations. These actions may sound worse than the fear, but taking action will help you feel more in control of your life.

Toll-Free Number: 1-800-344-4867

Eight steps to less stress

groups. Some people meet with others in Internet chat, bulletin One of the most important things to do in managing stress board, and e-mail listserv groups. Find a system that is to take care of yourself. 1. Find the right medical team works for you. and work with them on manag- 7. Avoid “toxic” people who bring you down. You know who ing symptoms. 2. Eat right. Good nutrition is a they are. 8. Take time to laugh. Laughter no-brainer. Stick to sensible is actually known to be physicalportions and avoid fad diets. ly healthy. Find those comedy 3. Exercise. Even though you DVDs, videos, or get out to a may not be able to do the things that you used to do, you movie. Read jokes on the can adapt your exercise regimen Internet. Talk to friends. Share a laugh. to fit with your MS. 4. Maintain healthy behaviors. Women should get regular pap smears and mammograms. Men should have their PSA tested regularly. Periodic physical exams are a must for everyone. 5. Avoid negative coping strategies. Try to quit smoking. Drink in moderation. Seek help with this if you need it. 6. Healthy relationships. Many people find support within their own families. Others find a support network in their religious group. The Society has affiliated self-help

Nancy Law is the Vice President of the National MS Society Client Programs Department. “Let Go— and Manage Your Life” was adapted from her MS Learn Online series “C.A.L.M. Down and Manage Your Stress,” which is archived at nationalmssociety.org/MSLearnOnline. The C.A.L.M. model was developed by Barbara Braham in her book Managing Stress at Work. If you do not have Internet access, call us and request the transcripts.

Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007

LIVING WITH MS

Wheelchair independence Stanley Fierston has been living with MS for more than 25 years, and has used a wheelchair for 20 of them. He offers these insights:

• Fits in the overhead compartment of an airplane. Choosing a chair— add to your expert’s advice

See an expert first The purpose of a wheelchair is to keep you active and involved. It’s not about giving in. Walking, balance, and fatigue problems may all factor into a decision. It’s important to get fitted by a physical or occupational therapist familiar with MS who specializes in mobility devices. For me, balance issues meant I could not easily sit upright in a standard manual wheelchair. The arm rests were too far apart and my arms kept slipping off as I tried to sit up. I also wanted to keep using a regular car and to continue to travel by plane for my job. With the help of an expert, I got a narrow-seat, manual wheelchair that is also lightweight and collapsible. It: • Fits through most doorways • Is easy for my wife, who is my caregiver, to handle 14

•Comes apart quickly and stores in the trunk of a car

• Consider your home and community environment, the transportation you use, and the types of activities you want to do. This may narrow your choices. • Do some consumer research. Abledata.com has the most information about wheelchairs, scooters, and other products. Tips to roll by Safety. Keep your arms and hands on your lap when your wheelchair is being pushed. Otherwise, you take the chance of jamming them on something. Glove your hands. Protect your hands and keep them clean. You don’t know where that sidewalk has been. Keep up appearances. Don’t look shabby. Clean your wheelchair regularly, especially before important events. Disposable wipes can do the job.

Toll-Free Number: 1-800-344-4867

LIVING WITH MS

Easy eating. If you are at a function where food is served, get near a table or an empty chair. You’ll need a place to put things down quickly, if you have coughing spells as I do, or just want a graceful way to enjoy the food. Using the restroom. Get your paper towels before washing your hands. It isn’t easy moving a wheelchair when your hands are wet. Pocket resource. Reaching inside your pants pockets is difficult while sitting in a wheelchair. My solution: a pouch with a waist strap, sometimes called a “fanny pack.” I can easily carry wallet, handkerchief, keys to the house and car, and my trusty digital recorder.

“Scooter Bill” Becomes Law in NJ On January 26, 2007, NJ lawmakers approved legislation that requires individuals with mobility related disabilities to register with the NJ Motor Vehicle Commission (MVC). According to the bill (S1074/A2069), MVC will issue a placard or sticker to the disabled person so it (the placard or sticker) can be displayed on the motorized scooter; the scooter must be registered with the municipality in which the operator resides; insurance would be required as a condition for registration. In addition, the operator would be required to wear a helmet while operating the scooter and the scooter will have to be equipped with a brake. This legislation becomes effective 5/1/07. The National Multiple Sclerosis Society opposes this legislation as it discriminates against persons with disabilities. It puts undue conditions upon disabled people who operate motorized scooters to manage their daily lives. To learn more about this law or if you or someone you know encounter problems with enforcement of this legislation, please contact Allison Cerco at the Mid-Jersey Chapter, 732-660-1005 or [email protected], or Mike Burke, 732-8462728 or [email protected]

Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007

LIVING WITH MS

“I am the face...” H

ealth-care worker Kerrie Fields of Georgia writes: “I was in an unhappy marriage, I had just had major surgery, and we were barely getting by financially.... The stress, emotionally and physically, were getting to me.” Suddenly she was laid low by an attack of neurological symptoms. After a long series of exams she learned the problem was MS. Her marriage ended. But then, she writes, she found “a Kerrie Fields great new position in my organization.” She has gone on to become politically connected and involved: “Aside from the occasional pity party, my spirits remain high. I strive to keep my stress at a reasonable level, take my medications, and live my life.”

As Ian Moskowitz, a Nevadan writes: “I have never given up. ... I am not a disease. I just have one.” Fields and Moskowitz are just two of more than 800 people who have told their story

on FaceofMS.org, an online community created by people living with MS, launched by the National MS Society. It is a place where people can share their experiences and read the stories of others. It is also a space where those who may know little about MS can gain understanding from those closest to the disease. “I’m here to say my life with MS sucks,” Michael Magalotti writes. Magalotti, 32, lives in New Jersey, and offers a no-holdsbarred glimpse of MS: “I’m not going to sugar-coat it for you.... Every new exacerbation will bring new feelings of despair, frustration, and all the rest. If you keep it bottled up inside, you’ll explode.... We should be allowed to scream from the highest mountain ‘MS sucks!’” Visitors to FaceofMS.org add their stories, post their thoughts, and connect with others through their stories. Visitors can browse alphabetically by first or last name, by location, or by theme: Facing MS with Attitude; Facing MS with Purpose;

Facing MS with Knowledge; and Facing MS Together. “I had an epiphany today,” writes North Carolina real Charisse Workman estate broker and model Charisse Workman. “What does the face of MS look like?” Workman’s poem, “I Am the Face,” excerpted here, captures some of the contradictions and complexities: Please visit faceofms.org and support this ongoing movement by and for those who know MS best.

“I am the pretty face I am the hated face I am the desired face I am the designated face I am the lucky face I am the cursed face I am the face that I have to face I am just a face I am one of many faces...”

Ian Moskowitz

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Toll-Free Number: 1-800-344-4867

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SPRING2007

LIVING WITH MS

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oday I had to go up to Newark to do “biometrics” for my green card renewal. In the old days, it was a photo and fingerprints. Get 7:02 am train; get there at 7:40. It's pouring. Roll along to where I think the building is, but that entrance is for employees only—the public entrance is on the other side of the building on the parallel street. Get there and am now soaked. Bad 1; Good 0. Memo to self: when it's cold and raining, wear more than a light shirt. At two minutes to eight, a security person appears. “Is this immigration?” I ask. “No,” he says, “it's up the road.” Bad 2; Good 0.

Ten minutes later, the security guard appears. I explain the situation, saying several times that I can't get up the step. “Well there is another way in,” she says, “but I don’t have the key.” “Then get it,” I say. Ten minutes later, she reappears with the key.

I finally enter the building, through all kinds of secret passages, and get to immigration. “Fill out this form,” the receptionist says. I take the pen in my good hand, which is not my writing hand, but from the cold and a few spasms I can’t even hold the pen. “I’ve got no working hands,” I say pathetically, “could you help me please.” “Sure,” he I eventually get to the correct building even answers. Oh my God, first good thing of the wetter. Sign on the door says, “Disabled day. Bad 4; Good 1. Fairly quickly get seen access, go to the next entrance.” I go to the (I did have an appointment after all), and next entrance. There’s a step. And after the realize exactly what biometrics is: photo and step there’s a revolving door that a wheelchair fingerprints. The woman processing my won’t get through. Bad 3; Good 0. I ask a paperwork says, “If you don’t mind my asking, random person to ask the security guard to are you paraplegic?” “Well, it’s a bit more come over. “Oh she's just a small woman, complicated than that. I have multiple she can’t lift a wheelchair,” random person sclerosis,” I reply. “Really?” she asks, “my sister says. “I don't want her to lift me, I just need has that.” So we talked quite a bit about MS to speak to her,” I answer. “Well, she’s on her and her sister. “I hope she doesn’t have to be own, she can’t leave her position,” random in a wheelchair,” she says. “Well most people person says. Bad 4; Good 0. I ask another don’t,” I say, “but even if she does, she can random person. still have a good life.” When we’re done, she

asks if I can fill out a survey. “Well, if you can do the writing for me,” I say. “Everyone who worked here was good, but the disabled access was illegally non-existent.” She was very kind, so I’ll give another point: Bad 4; Good 2.

Bad 7; Good 4. I’m able to sit at the sushi bar—not perfect but it works.

Off to my favorite little art gallery, the Princeton Art Museum. Love it. It’s peaceful and beautiful. There’s a small special exhibit of late impressionist prints. First three: Leave the building (via the secret passages) Cezanne, Gauguin, Matisse. This is getting and back into the rain. Going back to the better, Bad 7; Good 5. Wait a minute, that station, things are dug up everywhere, and it’s 6" x 9" Matisse watercolor looks familiar. Of a slalom obstacle course between barricades, course! It's Coullioure, a small town in France fire hydrants, and “keep clear” tape. Have to where I was only 3 months ago. Bad 7; Good back track several times. Get to the station 6. After a long time in the gallery, it’s time to even wetter. Bad 5; Good 2. On the train, I try head over to the Physics Department to go to to send a text. Argghhh! The rain has fritzed a colloquium. Uh oh, my wheelchair battery my phone. Bad 6; Good 2. Memo to self: get is looking low and I may not make it back. a waterproof phone. Well what the heck—I’ll Bad 8; Good 6. spend the rest of the day in Princeton. On the train, the conductor says, “No, you don't have In physics, I look for an outlet. Surely my physics buddies won’t object to me reto pay.” Wow! Bad 6; Good 3. energizing my electrons? Even better, I find In Princeton, I go straight to a shop to get a an outlet and a computer terminal, so I ask a sweater and find one for $10. “Don't give me student to crawl under the table to plug me in. a bag, and please cut the labels off,” I say. Like Dracula, my strength is coming back It takes me the next ten minutes to put it on as I charge and surf. Bad 8; Good 7. Great as the assistant just watches. No, I’m not colloquium. Rumors of my MS-induced brain asking him for help, I think to myself. Then fog are indeed premature. Bad 8; Good 8. go to Starbucks, get a large hot tea, and read Now have enough charge to make it back to for a bit. Ah! Life is coming back into me. the station, I borrow someone’s phone to Bad 6; Good 4. It’s time for lunch, so I’m off call for a ride at the other end. Again, the to my favorite Korean hole-in-the-wall. conductor won’t charge me. Bad 8; Good 9. “You have new tables,” I say, “very nice, but Quit while I’m ahead. Moral of the story: I can’t fit under them in my wheelchair.” if you hang in there long enough, you’ll always get ahead.

By Michael Ogg 18

Toll-Free Number: 1-800-344-4867

Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007

COVER STORY

Creating a Movement

Thanks to everyone at Wieden+Kennedy, you’ll notice a shift in how the Society looks and talks about itself and the disease. The brand is built around the core concept of movement: “MS stops people from moving. The National MS Society exists to make sure it doesn’t. Join the Movement.” Because moving is so much of who we all are, we believe that everyone will be able to identify with this universal message and call to action.

LAURA WIEDEN, THE DAUGHTER OF DAN WIEDEN, HAS BEEN LIVING WITH MS SINCE SHE WAS 24. Dan’s awardwinning ad agency, Wieden+Kennedy, is world famous for creating brands for organizations like Nike and ESPN, just for starters. So when the Society approached Wieden+Kennedy about working together on a new brand for the organization, Dan Wieden saw it as an opportunity to do something important and longlasting for his daughter. He asked Buz Sawyer, managing director of the New York Office, if he was willing to work pro bono on the project—he said yes. Sawyer’s sister also lives with MS and their mother died from complications of the disease. A full team of strategic planners and creative staff was engaged to develop the new brand for the Society, resulting in more than $1 million worth of time and creative talent for the video, print ads, billboards, and TV spots to debut in March during MS Awareness Week. The new brand is authentic— every person featured lives with MS.

20

Toll-Free Number: 1-800-344-4867

Our new logo clearly identifies the Society and celebrates movement and personal expression.

The transformation is part of a long-term process. For a while you’ll be seeing both of our looks— old and new—together. But the movement has started.

Can one person’s voice launch a movement?

A NEW IDENTITY

We are asking everyone to Join the Movement. To learn how, visit jointhemovement.org or call 1-800-344-4867.

The color is a warm orange, which creates urgency, and stands out in a world where so many other colors represent so many other things. Through research, we know orange is optimistic, contemporary,

National MS Society “Movement” :30 second radio PSA

and cutting edge. It’s also a color that people with MS find highly readable

One of the few times we are aware of movement is when it suddenly stops. Multiple sclerosis stops people… from moving. We exist to make sure it doesn’t.

and can become a symbol for MS around the world.

With the help of people like you, the National MS Society addresses the challenges of each person whose life is affected by MS and helps them stay connected to the great, bigourmoving world. Visit Website at: www.nationalmssociety.org/njm

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SPRING2007

FUNDRAISING

“Hops to Hops” Bike Tour

G

ive your legs a workout on this challenging 40 mile ride through scenic New Jersey. Ride the beautiful rolling hills of Amwell Valley and enjoy the breathtaking views. Begin and end your loop at the River Horse Brewery. Upon your return to the brewery, enjoy a beer sampling along with a catered lunch and hot pretzels. Date: Sunday, September 9, 2007 Location: River Horse Brewery 80 Lambert Lane Lambertville, NJ 08530 Check-In: 8am Ride: 9am For more details, please contact Erin Sullivan, 732-660-1005 or [email protected]

FUNDRAISING

The 2007 Golf Classic The 2007 Golf Classic will be held on August 27th at the Forsgate Country Club in Monroe Township. This elite fundraising event offers lunch, 18 holes on the magnificent grounds and a cocktail reception with awards and gifts to follow. Registration begins at 11am. For more details, please contact Michael Elkow, 732-660-1005 or [email protected]

WAMS-South The 7th annual WAMS Celebration of Hope Luncheon will be held September 25, 2007 at Branches in West Long Branch. Chaired by Tindra Lanfrank and Joseph DiMattina this impressive event is expected to completely sell out again this year. The luncheon also includes a VIP Reception as well as live and silent auctions. Contact Lorraine Mackin at the Chapter 732-660-1005 or [email protected]

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Toll-Free Number: 1-800-344-4867

The Honorable Raymond A. Kershaw Named As Our 2007 “Humanitarian Of the Year” Our 2007 “Humanitarian of the Year” will be Raymond A. Kershaw of Freehold Township. Mr. Kershaw has been an unwavering supporter of our chapter and our events. Mr. Kershaw is a past board member, the current Site Coordinator for the MS Walk in Freehold and has been an active participant in improving the quality of life for those with multiple sclerosis in our community. He has been a friend to our chapter in countless ways and truly deserves to be recognized in this way. Mr. Kershaw will be honored at a reception on Thursday, June 28th, at Battleground Country Club in Manalapan, NJ. The reception will run from 6-9pm and tickets are $300. There are many ticket, sponsorship and ad journal opportunities available. Proceeds from this event will benefit our chapter as well as the exciting new MS programs at the Wellness Center at CentraState Medical Center. For more information, please contact Gina Murdoch at 732-6601005 x16 or [email protected].

Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007

PROGRAMS

MS Family Getaway Weekend 2006

We had attended a few functions hosted by the Mid-Jersey Chapter and Marina was finally at an age where she wanted to attend the MS Kids Camp. That was the start of her meeting other kids whose parents live with the daily ups and downs of MS. Now that she has made some friends who share this common link, I can see that not only does she enjoy their company, but she also truly benefits from it. It was with this in mind that I agreed to attend the Family Getaway Weekend.

C

hristopher Columbus may have discovered America around the first weekend of October, but my family found an even bigger treasure this past Columbus Day at the Mid-Jersey Chapter’s Family Getaway Weekend.

My diagnosis with MS in 1999 was naturally a life changing time for my family and I. My partner Janice and my daughter Marina have been tremendously supportive. I’ll admit that it took a lot of guts to get myself “out of the house” and be seen in public. It took even more courage to finally get myself involved in any activities out of the safety of my home. The every day effects of my living with a chronic disease finally pushed me to find the inner strength to get out more. My daughter, Marina, needed exposure to others that live each day with this lifealtering disease. 24

I was convinced that I would have a horrible time. It would be too much of a hassle. It would be too exhausting and I wouldn’t know anyone. The list of excuses went on. And much to my surprise, I was truly wrong. The whole weekend was phenomenal. Our event planner, Lisa TorreJanssen, provided a great time in the scenic Pocono Mountains. The drive was beautiful and Marina’s friend was there waiting as soon as we arrived. On the first night, we dined with all the other families. How nice it felt not to be the only one in a powered wheelchair, or walking with a cane or just limping to my seat. There was instant friendship between the families, as we no

Toll-Free Number: 1-800-344-4867

PROGRAMS longer felt alone in our daily battles of living with MS. There were resort activities, as well as those scheduled by Lisa. Marina quickly made more friends and was having a blast. It warms my heart to think of each family spending time together and bonding while painting the little wooden treasure chests. The events of the whole weekend were unforgettable. From the fun 60’s music show (I even knew the words to those songs), the delightful magic show (I still don’t know how he got that rope back in one piece), the enjoyment of seeing a kid win $10 in bingo (I tried), and even the brave souls that gave great karaoke performances (not me, but I cheered for everyone else), to making the cute picture frames out of the silly popsicle sticks. Everything was truly magical! And how cute was Lisa with that Barbie camera taking all those pictures for everyone? Thank you Lisa for filling all our hearts with those great candid shots, you rock!

My family arrived as three people giving this planned weekend event a try, and left as members of quite a larger family. It turns out that I am not the only person living in my part of New Jersey that lives with multiple sclerosis. We may all have differences with just one common bond of sharing life with MS as a part of our daily lives, but I believe we now have a true treasure chest of very unique pearls and gems that make up a larger family.

Thanks so much to The Mid-Jersey Chapter of the MS Society for providing this platform for its members to explore. You have changed lives, created friends, and brought together a network that can learn to reach to each other instead of feeling alone. My family feels richer for being a part of this experience. Next year’s Family Getaway Weekend can’t come quick enough. And who knows, maybe even more members will enlarge our family.

All the kids had a blast. I even heard the phrase “The Three Musketeers” a few times about Marina and her two newest buddies. Between the pool, arcade, ping pong, arcade, making tee shirts (and did I mention arcade?) all the kids truly had a great time.

Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007

PROGRAMS

POTPOURRI OF INFORMATION

Equipment Loan Closet:

Check It Out:

If you ever need a wheelchair, a scooter or a walker, the loan closet is the place to go. Perhaps you are going on a trip, having repairs done on yours or awaiting approval to purchase a new one – Give us a call to inquire if there is a piece of equipment that meets your needs. The loan closet materials are available to you for as long as you need. This equipment was graciously donated by members of the MS Community. If you are interested in borrowing a piece of equipment, please call the programs department at 732-660-1005.

MyMSMyWay.com: A robust, online portal that will help provide the MS community with existing resources and information, including basic tips on selecting the appropriate technology and making technology easier to use. Users also will be able to sign up through the Web site to take part in the MS Technology Collaborative’s landmark survey.

The loan closet is currently very full and we have limited space to accept additional pieces at this time. A large Thank You goes out to After Care Medical in Keyport who administers our loan closet – picking up donations, doing repairs and delivering items to our members.

Computer Outreach Program Would you like to be connected with the outside world? Are you attending a training class and would like a PC to assist?

If you’re interested in receiving a free USB drive (64MB) that is “preloaded” with a direct link to the mymsmyway.com website, please contact Allison Cerco at 732-660-1005 or [email protected]

The NMSS Mid-Jersey’s Chapter has donated PCs available for those in need. For more information, contact Lisa at 732-660-1005.

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Toll-Free Number: 1-800-344-4867

PROGRAMS

Save The Dates! Family Fun Day at Monmouth Horse Race Park June 9 or 10, 2007 This is one of the Mid-Jersey Chapter’s most popular programs. We have a DJ, prizes, face painting, pony rides, and lots and lots of fun!!!!! Watch for details to arrive in May.

Kid’s Camp August 3, 4, & 5, 2007 The Mid-Jersey Chapter is pleased to extend an invitation to children (ages 7-15) of a parent who has multiple sclerosis for a weekend of fun and learning at Refreshing Mountain Camp. Come join children from 3 chapters for a weekend of swimming, camp fires, and arts & crafts. This special weekend offers a great opportunity for kids who have a parent with MS to connect with one another in a supportive environment. Here are some quotes from our surveys: “I wish camp was a week long!” “It was so much fun!” “I made so many great friends.” Further information will be coming in June. Make sure to mark your calendars now!!!

Información en Español There are between 25 and 35 million Spanish speakers living in the U.S. Some of them have MS; many more know someone with the disease. “As part of our effort to provide people with up-todate, unbiased information, we’re offering many of our resources in Spanish,” Maria Adelita ReyesVelarde, MD, MPH, told MSConnection. Dr. ReyesVelarde coordinates the Society’s national Hispanic outreach program. Last August, the program developed Lista de Recursos de Información para Personas con MS o sus Familiares, a list of Society brochures and webcasts in Spanish. It also includes URLs for a number of MS-related organizations for Spanish-language speakers. For a copy, call us at 1-800-344-4867. Most of the Society’s Spanish-language brochures can be read or downloaded from our Spanishlanguage home page: nationalmssociety.org/espanol. The page also includes links to other Spanishlanguage MS organizations, online communities, and information about Spanish-language books on MS published by Demos Medical Publishers.

Other Spanish-language resources Lista de Asociaciones Nacionales de EM (National Associations list provided by MSIF) www.msif.org/es/global_ms_network /index.html La Federación Internacional de EM (Multiple Sclerosis International Federation Spanish Information) www.msif.org/es Federación Española para de Lucha la contra EM (Spanish Federation against MS) www.esclerosismultiple.com La Alianza Nacional para la Salud Hispana (National Alliance for Hispanic Health—general health info) www.hispanichealth.org

Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007

WELLNESS

My Staunchest Ally: The Mid-Jersey Chapter By Lou Fioto

I

‘ve had multiple sclerosis since I was 26 years old. I have the slow progressive kind. I’ve been fighting it for 27 years. One of my staunchest allies in this fight has been the National Multiple Sclerosis Society. And for the last 11 years, the Mid-Jersey Chapter has been right up there on the front lines with me.

needed, they have some available so you can keep going while your own is being repaired or replaced. The financial assistance can also be used to pay for aides or personal assistants. And some additional resources are available if you have children. Soldiers in any kind of conflict occasionally need some R and R, which stands for Rest and Recreation, and the Mid-Jersey Chapter does R and R with the best of them. It sponsors a family getaway weekend, an outing to a baseball game, a day at Monmouth Park racetrack (my all time favorite), summer camp for my child, several social outings and educational symposiums, and other events that help ease my mind and body and let me know that I’m not alone.

I’ve provided the heart and soul and guts in this battle. The Mid-Jersey Chapter has provided the guns and ammunition and, most of all, the moral support so desperately needed in a fight like this.

When you are fighting long and hard against an insidious enemy like multiple sclerosis, it’s extremely important to keep your morale high. In this respect, I thank God for the MidJersey Chapter. The staff includes some of the most patient, understanding, supportive, The Chapter supplies the newsletters, fact knowledgeable and dedicated people around. sheets, research studies, web sites and points of When I deal with them, I feel like I’m dealing contact that arm me with all the information with friends or family, not some formal, I need to plan my strategy in this lifelong bureaucratic organization. They are friendly, campaign. It does the fundraising and open and outgoing, and treat me with dignity political lobbying and all the other stuff like and respect. They make things easy on me and that to get me all the support it possibly can, don't force me to go through a lot of complex, and to make sure my fight doesn’t go nerve-racking, time-consuming red tape. They unnoticed. And it leads the cheering with every know war is hell, so they keep the red tape to positive step I take and every little victory I win. a minimum. Because I am eligible and meet certain criteria, Finally, they are always there, even if it’s just the chapter also gives me some financial to provide a word of encouragement, an assistance to help keep my equipment (my attentive ear, or a shoulder to cry on. For more lowered floor accessible van, my power wheelinformation, on the Mid-Jersey Chapter call chair and my hospital bed, to name a few) in 732-660-1005. first-rate shape. If some extra equipment is 28

Toll-Free Number: 1-800-344-4867

WELLNESS

O Creating

Karma! By Cyndi Sopenoff

ur yoga group may be small in number, but we are big in spirit! Yoga literally means to unite mind and body. Yet our enthusiastic group also stands united by the common connection of multiple sclerosis. That doesn't limit us; it challenges us. Yoga offers many benefits for the mind, body and spirit. The practice of yoga increases energy, endurance, and strength. It improves flexibility, circulation, posture, concentration and the mind/body connection. It decreases pain, blood pressure and stress. Most importantly it is relaxing and just feels good!

Where: Heart & Soul Holistic Center Group members keep coming back to incorporate yoga into their lives because it provides a sense of 1613 Main Street physical and mental well-being. Unlike traditional Lake Como exercise, it doesn't fatigue your body. You come Teacher: Shawn Sickles away with clarity and awareness. It's exercise for 732-370-5190 the soul! When: Mondays, ongoing In order to truly benefit from a Yoga class, it must 11:15 AM – 12:45 PM be facilitated by an excellent teacher. Shawn is a Cost: $15 per class wonderful teacher who not only excels in yoga, but who also understands the challenges of MS. Her easygoing and motivating manner helps to push each individual to their personal goals. Shawn’s assistant Vinnie is always on hand to add that extra push for bodies that can't make the entire stretch. Vinnie also helps group members to adjust their bodies into the correct poses, which offers a maximum stretch with a gentle touch. Both Shawn and Vinnie give extra help to everyone. An added bonus is that the yoga paraphernalia is already there. No one has to carry anything to class. A bathroom is a few steps away. As students, we have different levels of ability but all gain something from the experience. Join us as we look deeper inside ourselves. Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007

WELLNESS

Y

ou know the problems all too well. Your life may be invaded by problems such as muscle weakness, spasticity, decreased balance and coordination. Everyday activities that used to be easy for you are now becoming a timeconsuming struggle. Its time for you to learn about the magical secret of aquatic physical therapy.

Every Friday from 1:002:00 pm a happy group of MS cohorts meet at the pool at Tom’s River Fitness & Aquatic Center. A group physical therapy session is conducted by licensed physical therapist, Carol A Buckwalter, PT. A typical session consists of a blend of aerobic activity, abdominal strengthening, coordination and balance skills, strength work for arms and legs and stretching. Of course, the intangible benefit is the fun and freedom that everyone shares.

How does freedom play into this, you might ask. First let’s consider the properties of water. Due to buoyancy, you are 10% of your normal body weight. This same buoyancy assists movement; however, with faster movements the water provides resistance. The stage is set for you to work-out in a way that would not be possible on land because you are virtually weightless. You can try walking without an assistive device. YOU CAN TRY ANYTHING!! The facility at Tom’s River Fitness & Aquatic Center is very “MS friendly”. There are no steps at the entrance, the locker rooms and pool are wheelchair/scooter accessible and there are handicapped showers and bathrooms. The Fitness Center staff goes the extra mile by providing a helping

FOR MULTIPLE SCLEROSIS

WELLNESS

hand when needed. The pool is kept at 82 degrees and may be entered by ladder or hydraulic chair lift. This lovely facility is located in the K-Mart Plaza on Rte. 37 East, Toms River, NJ. It’s natural for you to have some concerns about trying something new. Here are some tidbits to help you feel more comfortable about your new program. This is NOT A SWIMMING CLASS. The pool is shallow and even non-swimmers take part with great success. Everyone works at their own pace and all activities are modified to YOUR needs. The music is playing, the jokes are flowing and the smiles are beaming. There are some logistical items you need to know about. 1. Contact NMSS for the

necessary paperwork. 2. The medical release form must be signed by your doctor. 3. If you need help dressing, showering or require significant assistance with transfers, you must bring a care partner. 4. Bring a towel (or 2). You may want to wear a shirt or other insulating garment to keep you warm in the water. 5. THERE IS NO FEE FOR THIS PROGRAM. Please join us at Tom’s River Fitness & Aquatic Center on Fridays from 1:00-2:00 pm. You’ll feel energized, have more stamina and find everyday activities easier. And of course the most important thing: YOU’LL HAVE FUN!! If you have questions about this important new program, call Carol A. Buckwalter, PT at 732-330-3935 or NMSS at 732-660-1005.

is it magic? 30

Toll-Free Number: 1-800-344-4867

Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007

EXERCISE PROGRAMS EXERCISE PROGRAMS AVAILABLE Interested in attending any fitness programs? Here is a listing of community resources available to you. Please call the contact person for more information.

Toms River Ocean County Toms River YMCA Wednesdays: 10-week sessions 10:40-11:40am 6:30-7:30pm Terry (732) 341-9622 Therapeutic Chair Yoga for limited mobility, use of an assistive device & those not comfortable with getting on the floor. $55 for basic membership $69 for 10-week session

t

YOGA South Belmar Monmouth County Heart & Soul Holistic Center 1613 Main St. Mondays: 11:15am Instructor: Shawn (732) 370-5190 Yoga for those with MS. $15 per class Middletown Monmouth County Tatum Park Wednesdays: 12:00-1:00pm Barbara Sager (732) 460-1167 Yoga for Limited Mobility. $60 for six 1-hour sessions

EXERCISE AND TAI CHI Edison Middlesex County JFK Rehabilitation Institute Center open Monday-Friday Fitness Center (732) 632-1610 Offers fitness & tai chi programs, personal trainers. Prices vary for programs.

Red Bank Monmouth County Red Bank YMCA Tuesdays: 11:30am-12:15pm 8-week sessions (732) 741- 2504 Chair Yoga for limited mobility & those not comfortable with getting on the floor. $60 for 8-week session.

Eatontown Monmouth County SCAN Learning Center Monmouth Mall Tuesday and Thursday: 11:00am-12:00pm Beth Stamp (732) 542-1326 ext.14 or visit www.scannj.com Ease into Exercise for People with Special *Please Note: There are 2 steps to get into the room. Needs. Small registration fee of $4.00 to individuals who are SCAN members. Must Freehold have a doctor’s written recommendation. Monmouth County CentraState Health Awareness Center Mondays: 1:30-2:30pm 7-week sessions Health Awareness Center (732) 308-0570 Yoga for those with MS. $59.50 for 7-week course 32

Toll-Free Number: 1-800-344-4867

EXERCISE PROGRAMS AQUATICS Edison Middlesex County Jewish Community Center Tuesdays: 1:00-2:00pm Arlene Cianciulli (732) 574-1042 Open swim for all disabilities. Program runs September-June. Must have doctors note before starting program. Must be able to care for yourself or bring your own volunteer to assist you. $25 per year Scotch Plains Middlesex County Open swim for all disabilities. Swim Inc. Scotch Plains YMCA Thursdays Swim: 1:00-2:00pm Cake & Coffee: 2:00-3:00pm Bonnie Dauncey (908) 755-7989 Program runs September-June. Donations accepted. Freehold Monmouth County Freehold YMCA Tuesdays: 1:00-3:00pm 1:30-2:30pm pool time Adda Germann (732) 833-0106 Must be able to care for yourself or bring your own volunteer to assist you. Program runs September-June No fee. Toms River Ocean County Toms River YMCA Mondays & Fridays: 11:00am-12:00pm Aquatics Coordinator MaryAnn McCormick (732) 341-9622 ext. 4210 Open swim for all disabilities.

Must be approved by aquatics instructor at YMCA before beginning program. Must be able to care for yourself or please bring your own volunteer to assist you. No fee. Toms River Ocean County Toms River Fitness Center Fridays: 1:00-2:00pm Carol Buckwalter (732) 330-3935 Aquatic therapy swim program facilitated by a physical therapist. Must have doctor sign release form. No fee.

THIS IS WHY… MS strikes adults as they start college, start families, start careers. This is why we care. This year more than 37,000 people in Central New Jersey will participate in a National MS Society Event. This is why we need volunteers! Call us to find out how you can help. 732-660-1005 or 1-800-344-4867

Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007

SELF-HELP GROUPS Meeting dates and times can change. We strongly recommend that you call the contact person before attending a meeting. It is also great to make the personal connection beforehand. HUNTERDON Whitehouse Station 2nd Friday, 7:30-9:30pm (Doesn’t meet in Jan, Feb, July, Aug.) Our Lady of Lourdes Church 390 Route 523 Joan S. (732) 828-1263 Peggy D. (908) 806-4920 HUNTERDON AND MERCER New Hope, PA 3rd Wednesday, 6:30-8:00pm (Meets all year) St. Martin of Tours Church West Bridge Street Angela J. (609) 915-7208 Robyn B. (267) 617-7104 MERCER Lawrenceville 4th Sunday, 2:00-4:00pm (Doesn’t meet in July & Aug.) Morris Hall 1 Bishop’s Court and Route 546 Mike P. (609) 588-0902 Donna M. (609) 610-0879 Robbinsville/Hamilton Area 1st Tuesday, 7:00-9:00pm (Meets all year) Mercer County Library Washington Branch 42 Robbinsville-Allentown Rd. Stephanie H. (609) 647-7357 Steve B.(609) 799-9585 MIDDLESEX East Brunswick 3rd Wednesday, 7:00-9:00pm (Meets all year) East Brunswick Library 34

2 Civic Center Dr. Elihu R. (732) 613-5080 Katie O. (732) 651-1232 Metuchen (This is a social group with discussion) 3rd Tuesday, 10am-1:00pm (Doesn’t meet in July & August) First Presbyterian Church Woodbridge Ave. Camille H. (732) 634-4104 Sonya D. (732) 826-7754 Bob H. (732) 249-0480 MONMOUTH Marlboro (No set schedule. Call the contacts.) Saturdays, Meets every 4-5 weeks. 10:00am-12:00 noon (Meets all year) Marlboro Public Library Library Court and Wyncrest Dr. Off Route 9 Lorraine C. (732) 671-9384 Dianne M. (732) 536-3033 Freehold (Professionally facilitated) 3rd Monday, 1:30-3:00pm subject to change (Doesn’t meet July, August or February) CentraState Hospital Health Awareness Center (Vicinity of Freehold Gardens Hotel) Michele Emmons, RN, MS Center Coordinator (732) 294-2505 Wayside “Emily’s Field of Dreams” (Social group for cross disabilities. ) Every Wednesday, 11:00am-1:30pm Community group, supported, but not directed, by NMSS. St. Anselm’s Church 1028 Wayside Road Tinton Falls, NJ Rhoda Y. (732) 462-0714 Community Resource Cross Disability Group

Toll-Free Number: 1-800-344-4867

SELF-HELP GROUPS Wayside “Making Connections” 3rd Saturday, 10:00am-12:00pm St. Anselm’s Church 1028 Wayside Road Tinton Falls, NJ Dennis H.(732) 531-7570 Bob F. (732) 212-1673 Dianne Z. (732) 539-2457 Pat M. (732) 643-1734 Oakhurst “Tuesday Troopers” 2nd Tuesday, 12:00-2:00pm (Meets all year) Mid-Jersey Chapter 246 Monmouth Rd. Ruth D. (732) 739-3650 Lori F. (732) 229-2259

Manahawkin 3rd Friday, 10:30am–12:30pm (Doesn’t meet in July, August and December) The Lutheran Church Of the Holy Spirit 333 North Main Street, Room 6 Jill J. (609) 607-8720 Gail (609) 978-1268

OCEAN Toms River 4th Friday, 7:00-9:00pm (Doesn’t meet in July & August) The Lighthouse 591 Lakehurst Rd. Pat C. (732) 244-7523 Dianne B. (732) 892-2230 Mary Ellen H. Caregiver Group

WHAT ARE SOME ADVANTAGES TO BEING IN A SELF-HELP GROUP?

Brick The last Monday, 10:30am-12:00 noon (Meets all year) Ocean Medical Center, 1st Floor Atrium Jack Martin Blvd. Fran M. (732) 701-1593 Alice M. (732) 244-8332 Jan P. (732) 840-2186

SOMERSET Hillsborough 4th Thursday, 7:30-9:00pm Somerset County Library 1 Vogt Road Bridgewater, NJ Wendy P. (908) 359-4514 Doug R. (908) 369-4609 John T. (908) 281-0247

• To feel inspired by and supported by others and give the same in return • Provides a connection in an experience that can feel isolating • Makes people feel less helpless about themselves and others because they are able to help others • Allows powerful emotions to be shared

Visit our Website at: www.nationalmssociety.org/njm

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CALENDAR OF EVENTS

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Toll-Free Number: 1-800-344-4867

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ROUND UP

Visit our Website at: www.nationalmssociety.org/njm

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PLANNED GIVING

Fulfilling An Obligation Through Your Will

T

he planning and writing of a will is both a family obligation and a personal privilege. It’s something every person has the legal right to do. By completing a will, you are helping your family distribute your assets at the time of your death. Your will is the primary instrument to determine how your estate will be disbursed after your death. In the event you do not have a will, the court or others will decide for you, often ignoring your desires. Details of your will should include the naming of an executor, deciding who will serve as guardians of minor children, determining the use of accumulated assets, and expressing gratitude for all of life’s blessings by giving to your favorite charities, such as the National MS Society. If you remember the Society in your will, we would like to know so we can thank you now. We want to express appreciation for your confidence in our future and your commitment to ending the devastating effects of Multiple Sclerosis. This information also helps us plan more effectively for the future. By informing us that you have included the Society in your will, you will be invited to join the Pillars of Society.

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Pillars of Society is the National MS Society’s Honor Society that recognizes individuals and families who have remembered the Society through a bequest in a will, or through some other deferred gift. The wonderful thing about your will is the freedom it gives you to enjoy your family and friends at the National MS Society now– knowing that you have provided for their long-term security. You have both the right and opportunity to do so. To learn more about including the Society in your will or about the Pillars of Society, please contact Mike Elkow, Chapter President. As always, we recommend that you discuss your plans with your professional advisors.

PLANNED GIVING

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Please send me a free copy of “Legacies for the Future”. I have remembered the Society in my estate plans. Please send me information about making a bequest or using a codicil to change my will. I have questions about gifts of stock, real estate or personal property. Mail this coupon or call 1-800-344-4867 (press #1)

Name _____________________________________________________________________________________ Address ___________________________________________________________________________________ City _____________________________________________________ State _____ Zip _________________ Phone __________________________________________________________________________ E-Mail __________________________________________________________________________

Return to: Planned Giving Services National Multiple Sclerosis Society 246 Monmouth Road Oakhurst, New Jersey 07755

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Toll-Free Number: 1-800-344-4867

Visit our Website at: www.nationalmssociety.org/njm

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SPRING2007 We invite comments and suggestions - send any editorial information to the chapter. The National Multiple Sclerosis Society is dedicated to ending the devastating effects of Multiple Sclerosis. The National Multiple Sclerosis Society... One thing people with MS can count on. National Multiple Sclerosis Society Mid-Jersey Chapter

Clip this convenient form and mail it with your check today! WE NEED YOUR HELP! o o o o o o o

One Year Membership Mid-Jersey Chapter - NMSS 246 Monmouth Road Oakhurst, NJ 07755

$1,000 (and over) BENEFACTOR $500 SUBSCRIBING $100 PATRON COMPLIMENTARY (Person with MS unable to pay.) $25 SUSTAINING $20 GENERAL OTHER

Please Check: o Person with MS o Relative o Other Name Address City

State

Zip

FREE MATTER FOR THE BLIND OR HANDICAPPED Mid-Jersey Chapter 246 Monmouth Road Oakhurst, NJ 07755

ADDRESS CHANGE REQUESTED

Toll-Free Number: 1-800-344-4867