MSConnection Issue 1 2010

In running shoes, wheelchairs and strollers, on scooters and holding leashes,

12,000 neighbors gather around our region each spring for Walk MS.

This amazing, family-friendly event is a chance to strengthen your existing network of friends and family, meet others who are living with MS and start building a true community of people affected by this disease.

We’re taking a new approach to Walk MS this year, with even more for you to experience and take away from the events on April 25 and May 2.

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Walk MS: A community comes together

2010

2010 Issue 1 Greater Delaware Valley Chapter

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Spring Wellness Symposium Pages 8-9

Turn it orange during Awareness Week Page 10-11

Emotional toll of MS Pages 12-13

Advocate pushes accessibility Page 24

JOIN THE MOVEMENT: nationalMSsociety.org/pae2

National Multiple Sclerosis Society Greater Delaware Valley Chapter 1-800-548-4611 1 Reed Street, #200 Philadelphia, PA 19147

Chairman Brian DiDonato

Vice Chairs Larry KaneJudith A. Spires

President Tami Caesar

MS stops people from moving. The National MS Society exists to make sure it doesn’t. We do this through our home office and 50-state network of chapters by funding more MS research, providing more services to people with MS, offering more professional education and furthering more advocacy efforts than any other MS organization in the world. The Society is dedicated to achieving a world free of MS. Join the movement at nationalMSsociety.org.

The National MS Society does not endorse products, services or manufacturers and assumes no liability for the use or contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published information and expert opinion, and does not constitute therapeutic recommendations or prescriptions. We recommend that all questions and information be discussed with a personal physician.

©2010 National Multiple Sclerosis Society, Greater Delaware Valley Chapter

MSConnection welcomes letters to the editor. Send letters to [email protected] or the address above. Include your name and a phone number or e-mail address where we can reach you, if necessary. Please note: we may edit your letter for length and content.

Vice President, Communications Kevin Moffitt

MSConnection Editor Anne Krishnan

UPCOMING EVENTSTo register for these or other events, visit calendarMS.org.

EMPLOYMENT TELECONFERENCE SERIES

March 18 – Staying Positive During Your Job Search

March 25 – How to Search for and Apply for Jobs Online

April 1 – Practical Applications of the ADA Amendments Act

April 8 – Resources for Training and Placement for Older Workers

April 15 – Considerations for Career Changes

April 22 – Starting a Business: With the Right Supports, It’s Easier Than you Think

COMPREHENSIVE CARE WEBINAR SERIES

April – Part 1: Your Comprehensive Care Team

April – Part 2: Neurologist

May – Part 3: MS Nurse & MS Center

May – Part 4: Rehabilitation

May – Part 5: Psychosocial Support

ONE-TIME WORKSHOPS

March 24 – Spring Wellness Symposium (see more on pages 8-9) Pennsylvania Convention Center, Philadelphia

April 10 – Mindfulness Matters, Good Shepherd Rehabilitation Hospital, Allentown, Pa.

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TOLL FREE NUMBER 1 800 548 4611 3

FDA APPROVES DRUG TO IMPROVE WALKING

The U.S. Food and Drug Administration has approved the marketing of Ampyra (dalfampridine, formerly known as fampridine SR, Acorda Therapeutics) for its ability to improve walking speed in

people with any type of multiple sclerosis. This is the first therapy specifically approved to treat a symptom of MS.

PEDIATRIC MS MORE AGGRESSIVE

Researchers have found that pediatric-onset multiple sclerosis is more aggressive and causes more brain lesions than MS diagnosed in adulthood. Patients with pediatric-onset MS have three times as many relapses annually than patients with adult-onset disease, the University of Buffalo scientists reported. But they added that the average time to reach the secondary progressive phase of MS is about 10 years longer in patients who develop MS in childhood.

VENOUS OBSTRUCTION MAY PLAY ROLE IN MS

Chronic cerebrospinal venous insufficiency (CCSVI), a dysfunction of brain blood flow, may contribute to nervous system damage in MS.

In a small study, Dr. Paulo Zamboni from the University of Ferrara in Italy found significant evidence of slowed and obstructed drainage in the veins draining the brain in many of those with MS. His team also found evidence of reverse flow of blood back into the brain, which they speculated might set off the inflammation and immune-mediated damage in MS.

The National MS Society has invited researchers to submit grant proposals that would explore this lead. These applications will undergo an accelerated review process.

EARLY RELAPSES LINK TO MS PROGRESSION

People living with MS who have relapses within the first five years of onset appear to have more severe short-term disability compared to others without an early relapse. The study results also indicate that relapses in people under 25 had a more enduring impact on disability compared with those 35 years and older, underscoring the importance of early treatments to reduce relapses.

DRUG TARGETS EMOTIONAL EXTREMES

A therapy for pseudobulbar affect, the uncontrolled laughing and crying that affects some people living with MS, reduced episodes by nearly half in a late-stage clinical trial. Trial participants taking Zenvia also showed improvement in their mental health and depression scores, reported Avanir Pharmaceuticals, which hopes to secure FDA approval this year.

COMMON BACTERIA MAY TRIGGER MS

Recent research has shown that a common bacterium in your mouth may worsen MS. Porphyromas gingivalis produces a unique type of lipid that enhances inflammatory responses. The severity of disease in a mouse model of MS was significantly enhanced by the addition of these lipids.

PROMISING ORAL DRUG SUBMITTED TO FDA

Novartis International AG applied for FDA approval of oral fingolimod in December. Positive results from two large-scale phase III clinical trials of oral fingolimod have shown the drug to significantly reduce relapse rates, and one of the trials also suggested it could slow the progression of disability. Multiple trials are still under way to provide more details on safety and efficacy of the drug.

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For years now, we have been talking about starting a movement to create a world free of MS. While we have

seen more people getting involved in our programs and accessing our services, it is essential that we come together at Walk MS to show our collective commitment to ending this disease.

Since its inception, Walk MS has been the rallying point for people who wanted to be part of the fight against MS. Whether you have been living with MS for 30 years or were diagnosed 30 days ago, we need you to make this event a success.

Walk MS is your chance to get involved and be an advocate on behalf of the thousands of local people living with MS. It is our most accessible event, designed for anyone and everyone who wants to walk or wheel with hundreds of others who believe that one day, MS will be no more.

The good news is that we are getting closer to that day. The recent FDA approval of Ampyra (dalfampridine) for improvement of walking speed is literally a huge step forward for people

living with MS. Later this year, the first oral disease modifying medication is expected to enter the market. This and the other research news on page 3 are made possible, in part, by the money raised by Walk MS.

Walk MS is the single most important day of the year for families and friends affected by this disease, and we are working to make it even better. On page 6, you will see some of the special features at a few of the 17 Walk MS sites in our area. In Allentown, you can give friends and family the “MS experience” at our interactive booth; in West Chester, you can find out everything you’ve ever wanted to know about making your home more accessible.

And if you don’t want to be out on the route, there are volunteer opportunities at every site, from handing out water to taking photos.

Walk MS is our chance to build the movement towards a world free of MS. I sincerely hope to see you there.

Sincerely,

Tami L. Caesar

Stamp out the disease at Walk MS

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Tami Caesar, President


LETTERS

Dear National MS Society,

Thank you for granting the financial assistance enabling me to obtain a stair lift. This home modification allows me the

freedom and independence to use my home’s second floor. My husband no longer has to assist me in negotiating the stairs. Thank you.

Sincerely, Nancy Wildeboer

To the Editor,

I want to thank my sister, Ellena Kirschbaum. Last year, she held two fundraisers for the National MS Society at the Pocono Raceway which raised $5,100. I would also like to thank all who volunteered.

On a personal note, I would also like to thank her for being so supportive since I have been diagnosed. She has been such a comfort to me as a friend and sister. I love you, E.

Thank you, Jacqlyn Freda

Charlotte McClellan, dedicated self-help leaderWhen the local hospital told Charlotte McClellan that it wouldn’t provide flu shots for the Lower Bucks Self-Help Group this winter, she didn’t give up.

Getting the flu shot was an annual tradition for her group, even before she became its leader a decade ago, and she wasn’t about to let it end.

“I don’t know who she called, but she got the flu shots,” said Charlotte Elam, a group member and former leader.

The story illustrates McClellan’s passion for the Lower Bucks Self-Help Group and its members, she said. “She was so committed to helping the Bucks County residents with MS,” Elam said. “She was just a great leader.”

McClellan died on January 11, 2010. She was 72.

Friendly and outgoing, McClellan was dedicated to providing resources of all kinds for her members.

Group members could rely on her to monitor the news and keep them informed of the latest developments in research and medications, recalled member Angela Pistorio.

While McClellan worked diligently to plan interesting meetings, she also made time for people to talk about the issues they faced, Elam added.

“She was very open, very accepting of everybody’s problems and concerns,” she said.

And McClellan treated group members each year by recruiting volunteers to set up, serve and entertain at their Christmas party.

McClellan also became an MS advocate, asking her local pharmacy to become more accessible. The store made changes as a result of her inquiry.

Elam hopes to rally the Lower Bucks Self-Help Group to participate in Walk MS in McClellan’s memory this spring.

“She will not be forgotten,” Elam said.

Go to page 19 to learn more about volunteering for this year’s race.


In Allentown, Reading and Washington Township, we’re piloting the “MS Experience,” a chance for you to show your friends and loved ones what it’s like to live with MS. This activity, led by our local self-help group members, is a great activity for kids and adults.

We’re also bringing our services to you.

n At North Penn walk site in Lansdale, Mindy Bartscherer, a neurological physical therapist, will discuss the importance of therapy in maintaining and regaining function for people living with MS

n At the Philadelphia Art Museum walk, Dianne Walker of Grisworld Special Care, will answer questions about the chapter’s home care service and how home health aides can benefit people and families living with MS

n At East Goshen Township Park in West Chester, staff from Total Access will give you the inside scoop on products that keep you moving, such as stair lifts, elevators and vehicle lifts

If your site isn’t one of our pilot locations, contact us at 1-800-883-WALK to organize an MS experience or services tent where you walk. We’d love your help.

At every site, Walk MS offers the opportunity to get involved in something that has a real impact on you and your neighbors living with MS.

In addition to funding MS research in Philadelphia and across the country, the Greater Delaware Valley Chapter is actively supporting and helping people living with MS in the region.

We’re building ramps, giving rides to the doctor, funding home-care aides, sponsoring self-help groups and standing up for you when your insurance company says “no.”

This is what Walk MS funds in your – our – community. And this is why it’s so important for everyone affected by MS to get involved.

Your journey to creating a world free of MS starts at Walk MS 2010. Be there.

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Learn more or register now at walk4MS.org or by calling 1-800-883-WALK.


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04.25.10West End Fairgrounds Gilbert, Pa.

Ridley Creek State ParkMedia, Pa.

Elmwood Park ZooNorristown, Pa.

Lenape ParkSellersville, Pa.

East Goshen Twp. ParkWest Chester, Pa. (5k run)

Medford LakesMedford Lakes, N.J.

Moorestown High School Moorestown, N.J.

Washington Lake ParkWashington Twp., N.J.

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05.02.10North Penn High SchoolLansdale, Pa.

Coca-Cola Park (Home of the IronPigs) Lehigh Valley, Pa.

Bucks County Community CollegeNewtown, Pa.

Phila. Museum of ArtPhiladelphia, Pa. (5k & 10k runs)

Gring’s Mill Rec. AreaReading, Pa.

Valley Forge Area Valley Forge, Pa.

Ocean City Board Walk Ocean City, N.J.

Parvin State Park Vineland, N.J.

Eastern High School Voorhees/Gibbsboro, N.J.

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Find a Walk MS site near you:

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Show your Philly pride!As of press time, our Walk MS Facebook page was the eighth-largest in the country, behind New York City, Boston and San Antonio. We want to triple our member base and show our pride in our region and our walks!

Become a member of our Walk MS group today and invite all of your Facebook friends to join, as well! We’ll update the page to let you know as we pick off the competition.

Just visit walk4MS.org and click on the link to follow us on Facebook.

Show your team pride!Think you have the best team T-shirt out there? Submit your design and compete in our Walk MS T-shirt contest.

1. Join our Walk MS group on Facebook. (Visit walk4MS.org and click on the link to find us on Facebook.)

2. Click on the “Photos” tab

3. Click on the “Add Group Photos” button, then the “Upload Photos” tab to add your 2010 team T-shirt design

4. Give your photo a caption: “Walk MS Team T-shirt Contest: YOUR TEAM NAME”

5. Get all your team members, friends and family to join in the fun and vote, simply by clicking the “Like” button under your design.

Even if you don’t have a design to submit, be sure to visit our group and vote for your favorite. The design that has the most “likes” will be recognized at the end of Walker Week on March 15.


Learn how to live your best life with MS at the Spring Wellness Symposium. This event will feature JUMPSTART®, the unique, empowering approach to wellness pioneered by Can Do MS, formerly The Heuga Center for Multiple Sclerosis.

We’re offering two great ways to benefit from this opportunity:

n Take advantage of a full day of learning at the symposium, with programs for caregivers and people living with MS OR

n Stop by after work to hear the highlights at “Wellness on the Go”

Wednesday, March 24 Pennsylvania Convention Center 1101 Arch St., Philadelphia, Pa.

DAYTIME SESSION: 10 a.m. to 4 p.m. (Registration and exhibits open at 9:15 a.m.)

EVENING SESSION: 6:30 p.m. to 8:30 p.m. (Registration opens at 6 p.m.)

Registration for each session is $5 per person. A boxed lunch will be provided for the daytime program and snacks for the evening program.

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WELLNESS SYMPOSIUMIn collaboration with:

www.mscando.org

Register by March 19 by calling 1-800-FIGHT-MS and choosing option 1, 9 a.m. to 7 p.m., Monday to Friday, or visiting MSlearn.org.


SYMPOSIUM AND WELLNESS ON THE GO

WHAT IS WELLNESS? Patricia Kennedy, RN, CNP, MSCN Can Do Multiple Sclerosis

Pat Kennedy, a nurse educator, will discuss the conventional medical approach to MS and how your eating, exercise and spirituality can add value to your doctor-prescribed treatment. She also will discuss how and why you should take care of your whole self, not just the part of you affected by MS.

GET ACTIVE FOR MS: MIND, BODY AND SPIRIT National MS Society staff and volunteers

There are so many ways that getting involved in the MS movement can benefit your well-being. Challenge your mind as an MS advocate; meet new people and improve your community as a volunteer; or improve your physical condition by taking part in Walk MS or one of our other fun events.

SYMPOSIUM BREAK-OUT SESSIONS

HEALTHY EATING, HEALTHY YOU Denise Nowack, RD National MS Society Southern California Chapter

Denise Nowack, a registered dietician, will discuss the relationship between your diet and your health. In addition to providing examples of good and bad nutrition, she’ll cover the effects of nutrition on fatigue and how to cook healthy meals without wearing yourself out.

CAREGIVERS’ FORUM Peggy Crawford, PhD National MS Society

MS takes a toll on caregivers, too, but you may rarely have a forum to discuss what you’re feeling. This session, led by a clinical psychologist, will be based entirely on the interests expressed by the audience. The workshop will provide a safe space for discussion by members of the group.

EMPOWER YOURSELF WITH EXERCISE Matt Sutliff, PT Mellen Center for MS Research and Treatment

Regular exercise is extremely important for people of every ability. Matt Sutliff, a physical therapist, will talk about the value of exercise in neuro-regeneration and for increasing strength and flexibility. He’ll give examples of exercises that can be modified for any ability level, and participants will leave with standing and seated exercises they can try in their own homes.

INWARD PATHS TO WELLNESS: MS AS A SPIRITUAL JOURNEY Carolyn Roberts, PhD, MFT

For many people, the diagnosis of MS is a crisis, with dangers as well as opportunities for greater awareness of our spiritual journeys. Carolyn Roberts will discuss how spirituality can provide benefits as part of a wellness program. She also will describe the stages of the spiritual journey of living with MS and spiritual practices for resiliency.

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You’ve told us you want to make orange the new pink, so we’re launching Operation Orange just in time for MS

Awareness Week, March 8-14.

Help us turn the Greater Delaware Valley orange by wearing orange, posting an orange sign, incorporating orange into your Facebook page and more. You can also “act orange” by advocating for yourself and reaching out on behalf of others living with MS.

We’ll extend our MS Awareness campaign into April to attract attention for Walk MS, as well. Look for buildings and fountains around the city to be lit in orange during the last week of the month to promote the Philadelphia Walk MS site and support people living with MS.

Read on to learn what you can do as part of Operation Orange:

n Show your pride: Cut out the sign on the inside back cover and display it in your window or someplace else visible to encourage others to learn more about MS.

n Write a letter to the editor: Write a short letter to your local newspaper explaining why it’s important that everyone join the movement. You can find a sample letter on our Web site at http://main.nationalmssociety.org/awareness.

n Register for Walk MS: It’s more important than ever that everyone living with MS in the Greater Delaware Valley gets involved in Walk MS. This event funds programs and services for people in your community each year, and it’s accessible to everyone. Register by calling 1-800-883-WALK or online at walk4MS.org. We’ll see you – and your friends and family – there!

n Dress in orange: Wear orange every day this week (or until you run out of orange clothes.) If someone asks about your color of choice, explain what you’re doing.

n Donate your Facebook status: MS stops people from moving. Let people know it’s not stopping you by typing a verb and then “orange” in your status box. For example: “walking orange,” “driving orange,” “climbing orange.” Send a message to all your friends and ask them to do the same.

n Volunteer: The National MS Society is a volunteer-driven organization, and

T U R N I T O R A N G E !

Please note: We apologize if this newsletter arrives after MS Awareness Week for some readers. February’s blizzard conditions delayed our production and mailing.

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WHEELCHAIR TOURS IN TRENTON

On Monday, March 8, Society volunteers will take on Trenton with our first-ever State House accessibility tour. We’ve invited legislators to experience the Capitol from a wheelchair, and the media to record their journey. Learn more about accessibility tours on page 24.


that means we need you to help steer. We have opportunities available for people of all ability levels, skill sets and career backgrounds. Call us during MS Awareness Week to talk about how you can get involved or tell us more about yourself for future volunteer needs.

n Talk to your doctor: Make an appointment with your neurologist or primary care physician to talk about relief for your MS symptoms. Or schedule a consultation with a specialist such as a urologist or mental health professional to tackle the symptoms head-on.

n Speak out: Is there a business you frequent that could be more accessible? Make time during MS Awareness Week to reach out to the owner or manager, either in person or in a letter. Explain that you have MS and how it affects you, and start a discussion about how the facility’s accessibility could be improved.

n Add awareness to your digital identity: The National MS Society has designed a number of orange images to replace your online profile pictures, insert in Instant Messenger, make your computer’s wallpaper, etc. Find it at http://main.nationalmssociety.org/downloads

n Make a video: Create a short commercial about why advocacy is so important for people living with MS. Upload it to YouTube and e-mail a link to [email protected].

OTHER MS AWARENESS EVENTS

A Lawrenceville, N.J. business will hold an MS Awareness Week event on Saturday, March 13 from 1-4 p.m. The event will offer food, T-shirts, a presentation about MS, music and raffles. Bring your friends and family to learn more about MS and enjoy the fun. Register by contacting Kim Roberts at 267-210-8025 [email protected].

MS Awareness Day Saturday, March 13, 1-4 p.m. Mrs. G TV and Appliances 2960 US Highway 1 Lawrenceville, N.J.

CAST YOUR VOTE DURING MS AWARENESS WEEK

We Keep Moving Living with multiple sclerosis is a challenge, no matter where you live. Imagine living with MS in an urban high rise – or in rural America where the closest MS specialist is 250 miles away, by bus. WeKeepMoving.org is a site that will chronicle a ten-week journey across the country. Unique stories and perspectives – challenges, triumphs and everything in between – will be available for you to see, hear and share. Join our journey as we learn about how people keep moving. WeKeepMoving.org

Your Vote Counts! We need you – and your vote – to select the stories for We Keep Moving. Each week, three different story summaries will be presented for voting, and all votes will be tallied to determine where the team goes the following week. Your votes will keep us moving across the country for ten weeks – make sure you vote each and every week!

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THE PHYSICAL AND MENTAL EFFECTS OF MULTIPLE SCLEROSIS ARE WELL KNOWN, BUT THE DISEASE CAN TAKE AN UNDER-RECOGNIZED TOLL ON THE EMOTIONS OF PEOPLE LIVING WITH IT.

The consequences of those misunderstood emotional changes can be profound, with negative impacts on the person with MS’ relationships and his or her overall health.

Emotional swings have long been associated clinically with MS. In fact, the disease was once linked with bipolar disorder.

While doctors no longer think there’s a connection between the two diseases, they do recognize an MS symptom known as emotional lability, said Dr. J. Lamar Freed, a psychotherapist specializing in chronic illness who’s living with MS.

“You’ll see somebody who might go in an hour’s time from being extremely depressed to elated to angry,” he said. “It’s more of a dramatic set of mood swings, and that’s not unusual with people with MS, especially when they get fatigued.”

Fatigue brings its own set of emotional symptoms, making people with MS feel tired, grouchy and irritable, Freed said. It also can make them overreact to situations, getting upset, angry or even giddy as a result.

A recent study by Italian scientists showed that people living with MS experience almost twice the level of withheld anger as the general population, a phenomenon the researchers attributed to nervous system damage, rather than a reaction to the disease’s stress.

Withheld anger makes sense within the context of MS, Freed said. In general, people living with the disease have a difficult time talking about their difficult experiences with someone who doesn’t have MS, he said.

“If they display negative emotions, it kind of frightens people off,” he said. “If they demonstrate good coping, people are more likely to be around.”

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FEELING THE EFFECTS

All of these emotions can make it difficult to maintain a relationship, he said.

When people don’t understand what’s causing their irritability and anger, both the person with the disease and his or her spouse may blame each other for the negativity they’re feeling, he said.

“If it’s properly attributed, it’s not going to damage the marriage,” he said. But “a lot of time, marriages are the thing that gets blamed for some of the subtle symptoms of MS, and so they become more vulnerable.”

Making things worse, fatigue can contribute to social isolation, denying people with MS the support networks that strengthened them individually and as part of a couple.

PUTTING MS IN ITS PLACE

The most important way to combat MS’ insidious effects on relationships is to understand your symptoms and the way the disease affects you. Pay attention to when fatigue or other symptoms are determining your interactions, rather than the situation.

The National MS Society offers an eight-hour relationship education program to help couples understand and overcome some of MS’ effects.

The Relationship Matters course helped Nancy and Jerry Wildeboer of Berwyn learn to better communicate and correctly attribute some tense issues to Nancy’s MS symptoms. The course was quite helpful, she said.

“If I forget things, it’s just because that’s what happens with MS,” she said. “It isn’t because I want to. It isn’t some sort of master plan to deceive him.”

Freed also advises people living with MS to develop an energy conservation plan.

“Learn how different activities affect your level of fatigue so you can have control of how you spend your energy, such as maintaining your marriage and social support network,” he said.

Developing such a plan may involve making some tough choices. For instance, choosing to make your marriage your No. 1 priority may necessitate deciding to take a less demanding job or retire early, he said.

It’s also important to develop a social network that supports you and your MS, he said. It may be a church, a group of friends and family or a self-help group, and you may interact in person or online.

Finally, people living with MS need to develop comprehensive medical teams that work together to care for them as a whole person, including a primary-care doctor who understands MS, a responsive neurologist, specialists for related symptoms and a mental health practitioner, Freed said.

“It’s important for anybody to take care of themselves,” he said. “For people with MS, it’s particularly important.”

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Relationship Matters courses are available in person, online and on the phone. Learn more at nationalMSsociety.org. (Click on “Living with MS” and then “Relationships.”)


THE THIRD WHEEL: MSA chronic, unpredictable disease like MS can challenge a couple’s intimacy in a variety of ways:

BARRIERS TO COMMUNICATION

MS affects everyone in the family—and both members of a couple are likely to have strong feelings about the unpredictable changes it brings to their lives. Finding comfortable ways to talk about the disease and its impact can be very difficult, at times leading to miscommunication or even silence. Learning how to share feelings and concerns is essential to maintaining intimacy.

SHIFTS IN THE PARTNERSHIP

When the symptoms of MS temporarily or permanently interfere with a person’s ability to carry out his or her daily activities at home and at work, the roles and responsibilities within the family are likely to shift. If, and when, the relationship begins to feel too unbalanced—or one member of the couple begins to feel more like a caregiver than a partner—closeness and intimacy can be threatened. Identifying ways to maintain balance in the partnership is critical to maintaining an intimate partnership.

ADDED STRESSES AND STRAINS

MS can add to the normal challenges of everyday life by straining essential family

resources, including money, time and emotional energy. When daily activities feel increasingly stressful, time-consuming or overwhelming, people may have little energy left for maintaining their emotional and physical partnership. Learning to manage everyday stresses and strains effectively can allow more time and energy for staying connected emotionally and physically.

CHANGES IN SEXUAL FEELINGS AND RESPONSES

Sexuality is an important aspect of intimacy for most couples. And while MS can affect sexual feelings and responses in direct and indirect ways, sexual intimacy does not have to disappear from a couple’s life when one partner has MS.

Fortunately, a disease like MS can also bring people closer together. Many couples report that facing the challenges of MS has allowed them to connect with one another in new and powerful ways—finding an intimacy that was stronger than any they shared before.

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Learn more or register today at MoveForMS.org


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AMERICA’S PREMIER MUD RUN SERIES IS COMING TO TOWN!

The first-annual Mud Run Brandywine offers a boot camp-style course, an unforgettable team-building experience and the chance to make a difference for 11,000 local people living with multiple sclerosis.

The Brandywine Valley provides a beautiful scenic backdrop and natural obstacles that, combined with man-made challenges, make for a truly unique 10k course.

Take this opportunity to push yourself and play in the mud with friends while moving us all toward a world free of MS.

Prefer to stay clean? We welcome supporters and volunteers to cheer on the runners and enjoy the fun.

We also have a long list of equipment, material and volunteer needs that you can help us fulfill. To make this event a success, we’ll need everything from EMTs to heavy equipment operators, and from bottled water to sewer pipes. Contact Jeff Brody at 215-271-1500 to learn how you can help.

SATURDAY, JUNE 12 | CHADDS FORD, PA

GET DIRTY FOR MS.

It’s the ultimate injustice for many people who have struggled to find a drug that

effectively manages their MS symptoms: to finally stabilize, only to learn the miracle drug bears the risk for a potentially deadly brain infection.

So it goes for the 63,000 people in the United States and Europe who have found success with natalizumab (Tysabri, Biogen Idec).

The drug was heralded upon its approval in 2004 for reducing relapses by 68% and slowing disability progression, but then pulled from the market the following year after three people developed progressive multifocal leukoencephalopathy, or PML. The drug returned to the market in 2006 with stricter safety warnings, but each new case of PML has drawn headlines.

Recently, concerns over the drug’s safety profile have begun to grow, as the number of reported cases of PML worldwide more than doubled from 13 to 28 between September and December. There have been five deaths since the drug’s reintroduction, and European marketing authorities announced in November that they’re taking a hard look at Tysabri’s safety profile.

It’s not clear whether the rate of

new cases of PML is increasing or whether some earlier cases went unreported, said Dr. Clyde Markowitz, director of the MS Center at the University of Pennsylvania.

However, there is growing evidence that the longer people are on Tysabri, the greater their risk for developing PML, he said.

A recent study showed that there’s a very low incidence of PML during someone’s first year on Tysabri, a less than 1/1,000 risk in the second year but about 1/800 risk after 2.5 years.

Only a few thousand people have been taking the drug for three years or more; as a result, the risk for that group is still being determined, Markowitz said.

Ultimately, the FDA may require that doctors and patients revisit the decision to take Tysabri after two years or limit the length of time it can be taken, Markowitz said, but he isn’t concerned about that possibility yet.

Deciding to quit Tysabri isn’t easy, Markowitz said. Most people are on the drug because others weren’t working for them. What’s more, recent research indicates that MS disease activity rapidly begins to return after cessation of Tysabri.

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“We have to use that information when we make the determination as to whether to take someone off the medication or keep plowing through and hope for the best,” Markowitz said.

The worsening safety profile has led him to take some patients at least temporarily off the therapy. Key candidates are those who were involved in the drug’s clinical trials at the University of Pennsylvania and managed their MS well on other drugs while Tysabri was off the market.

But most of Markowitz’ patients who are doing very well on Tysabri want to continue taking the drug, he said.

Count Beth Soffer in that group. After failing on all of the existing treatments, she enrolled in a clinical trial for Tysabri.

“It made a huge difference,” she said. “I recall saying to my husband, ‘There are some days when I don’t even feel like I have MS. It’s gone.’”

When the drug was pulled from the market in 2005 and 2006, Soffer’s exacerbations returned full-force.

“I was so angry that they took this away from

me,” she said. “It was such a terrible thing to do to the patients.”

While Tysabri is no longer as effective for her as it was in the beginning, Soffer still doesn’t think twice about taking it. People on Tysabri are monitored closely now for PML, she said, and that disease is more treatable than MS.

“I think the good outweighs the bad,” she said.

But as the risks of long-term Tysabri use grow, Markowitz said he hesitates to write new prescriptions for patients.

“It does give me a little pause to consider it early, or even in patients who have not completely tried other medications,” he said.

Now he thinks of Tysabri as a short-term therapy, a stopgap for one or two years until more options come along.

“Hopefully by then, we’ll have different medications or better screening of who may get PML,”

he said. “I feel a little more comfortable about using it for a short duration rather than the long term.”

RISKS, QUESTIONS GROW FOR TYSABRI

THE TYSABRI-PML LINK

PML is a brain infection that occurs mainly in people whose immune systems are suppressed because of HIV or extensive chemotherapy. The majority

of the population has been exposed to the PML virus, with healthy immune systems providing the proper surveillance to keep it dormant, Markowitz said.

Tysabri doesn’t deplete the

immune system, but it does neutralize immune cells’ ability to move into tissues. Some theorize that by doing so, it creates immune suppression in those tissues and allows the PML virus to take hold.

“IT DOES GIVE ME A LITTLE PAUSE TO CONSIDER IT EARLY, OR EVEN IN PATIENTS WHO HAVE NOT COMPLETELY TRIED OTHER MEDICATIONS,”

~ DR. CLYDE MARKOWITZ

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Volunteer helps med students understand life with MS

Elaine Balinski was all smiles as she submitted to more than 40 neurological exams over a two-day period this fall, all in the name of helping 156 Penn medical students learn what life is like with MS.

Dr. Anita Lee, assistant professor of clinical medicine at Penn, organized the two-day, round-robin program as part of her clinical medicine class for second-

year students. The program is aimed at teaching students how to take a history and give physical exams to people with various health issues.

“My goal was to introduce them to things that aren’t necessarily normal,” she said.

Some of the other health issues included blindness, heart murmurs and more. The students also worked with standardized patients (healthy people portraying particular health problems).

Over the two days, Balinski estimates she had about 44 exams from the medical students. She said the exams were more complete than what she gets from her regular neurologist. They tested her reflexes and her eyes. Then the supervising doctor had her walk, and the students caught her when she lost her balance.

She said this process made her happy to have

a variety of symptoms. From balance issues in her legs to optic neuritis, the students were able to see it all.

“I’m glad I have a funky eye and funky reflexes,” she said. “They really got to feel what MS is. They were just so fascinated! I think it hit home better than a lecture.”

She said it’s important to her to do this for the medical students because a lot of people with MS have hidden symptoms, and she wants the future doctors to know what those hidden symptoms are.

Balinski hopes to help train new students again next year, and thinks her participation can have a long-lasting impact on their care of people living with MS.

“It just made me feel good that when they see an MS patient they will think of me, and this will give them a little understanding,” she said.

Dr. Lee started the program a year ago and plans to continue because of the positive response from the students and the important skills they are receiving. The program is one of the students’ first opportunities for patient contact, she said. She added that being able to conduct a physical examination is a skill all doctors need to have.

Balinski said she also left the students with a very important lesson about interacting with patients. “I said to all the students, ‘When you’re doing any type of exam, look them in the eye and don’t walk out of the room until they’re done talking to you.’ I was so proud!”

If you’re interested in helping medical students in a similar setting, you can contact Dr. Lee at [email protected]. She can provide you with more information about her program or put you in touch with another professor who might need your assistance.

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Elaine Balinski, (right) at Walk MS

2009

RAISING THE BAR

Many thanks to others who have recently organized their own fundraisers:

To organize or publicize a community fundraiser, contact Kristin Marnie at 1-800-548-4611 or [email protected].

FUNDRAISER SEEKS VOLUNTEERS

Volunteers at the Pocono Raceway raised $5,100 for the Society and took in some great NASCAR action in 2009. Ellena Kirschbaum is looking for more volunteers to help man the raceway’s gates on Sunday, June 6 for the Pocono 500. After volunteering, participants can watch the race.

The raceway will donate $75 per volunteer to the National MS Society. To learn more, contact Ellena or Emil Kirschbaum at 1-570-857-0161 or [email protected]. The deadline to sign up is April 16.

n Michael Bair and friends, Bobblepalooza 2009, $2,728

n Taylor Hughes & Jenn Carter, sales of handmade coasters and origami, $100

n Fay & David Teal and Wayne Hickman, Laps to Conquer MS, $5,000

n Whitemarsh Rugby Football Club, golf event in memory of Sandra Woolford, $1,200

n John McGeary, Chips for Charity in honor of Chris Wakely, $686.35


Taking the initiative to make a differenceJake Angradi and Kevin Hughes of Saylorsburg recently raised $1,495 through a full-day fundraiser featuring raffle prizes, gift baskets, food and activities.

The catch: Jake and Kevin are just 12 years old.

Yet they’re among dozens of people in the Greater Delaware Valley who take fundraising into their own hands by organizing community events to benefit the Society and local people living with MS.

Jake, a sixth grader at Stroudsburg Middle School, cut his teeth by raising more than $2,000 as a top fundraiser for the MS READaTHON at his elementary school.

“I wanted to do a fundraiser again but something with my own twist on it,” said Jake, whose mother was diagnosed with MS before he was born. Kevin was eager to learn more

about the disease while also helping his mom, who has MS.

During the fundraiser, 60 students spent the day in the school library as a reward for good grades and good behavior. Each was asked to raise $20 to participate.

A chapter staff member engaged the students in an MS demonstration, then the kids ate pizza and won prizes and finished the day with a movie – all while wearing their pajamas.

“My mom was really proud of me for what we did and how much we raised,” Jake said.

Kevin was proud of himself, as well. “I felt like I had accomplished something I hadn’t accomplished before,” he said.

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© Joe Lewis


The importance of setting functional goals

When you work with a physical therapist, he or she typically asks you what you need or want to be able to DO. Walk easier? Faster? Longer? Use the restroom at work by yourself? Transfer from your bed to a chair without losing your balance? Use your wheelchair to go out to the store? Whatever they are, these are YOUR functional goals.

Defining and setting desired and realistic functional goals is important for you and for your therapist. Your PT will assess your current abilities to determine what problems prevent you from being able to perform your desired functions. Then, with you, he or she will develop a specific treatment plan to help minimize the problems so that you can progress to your desired ability.

You can expect your PT to:

n Listen to you – initially and ongoing, to understand your needs, what works and what doesn’t as you progress

n Learn what motivates you and use that to help you

n Consider the effects of fatigue, heat, pain and other common MS symptoms on your ability to carry out your treatment plan and reach your goals

n Keep you safe and not give you more than you are capable of doing

n Identify equipment to help you function more safely and efficiently

n Teach others to assist you

n Have expertise in how the body moves and how MS affects the nervous system and your ability to move

n Challenge you! Improvement requires effort beyond that which feels easy. Your therapist will make things gradually more difficult to push you to the next level

n Have you practice doing the functions that are difficult for you

n Give you “homework” to do between appointments – improving and progressing takes practice and repetition

Improving Function: The client –BY MINDY BARTSCHERER, PT, DSC

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QUESTIONS FOR COMPREHENSIVE CARE TEAM

We’re organizing a series of seminars with a comprehensive team of health-care providers such as neurologists, nurses and experts in rehabilitation and psychosocial support.

We want your input to ensure the seminars meet your needs. If you have questions for one or more of these professionals, please e-mail them to [email protected] with “comprehensive care questions” in the subject line.


Improving Function: The client –BY MINDY BARTSCHERER, PT, DSC

PT partnershipThe PT expects you to:

n Practice!

n Try, even when it seems out of reach

n Be open to trying new ways of doing things

n Communicate honestly about your experience and what’s going on

n Be good to yourself, pay attention to your body and know your limits

n Keep your eye on the small successes that then lead to big successes: reaching your goals

n Practice!

When you work together with a PT towards your goals, you will be successful!

Do you have a question for physical therapist Mindy Bartscherer? Please send them to [email protected].

Services can put your mind at easeThe Greater Delaware Valley Chapter offers a wide variety of services to help you overcome the daily challenges of living with MS. They include:

n Counseling: The chapter will cover your copayment or pay 100% of an uninsured client’s cost for 10 to 12 counselor visits

n Home safety assessment: Is your home safe? We’ll send an occupational therapist out to evaluate your home and make suggestions for changes that can help you stay safe

n Home modifications: The chapter will pay up to $2,000 of the cost of home modifications such as building a ramp, installing a lift or renovating a bathroom

n Emergency financial assistance: If you’re in a pinch, we can help with your mortgage, rent or utility bills. We also can help people living in New Jersey apply for energy bill assistance through N.J. Shares

Visit nationalMSsociety.org/pae and click on “services” on the left for more information or call 1-800-FIGHT-MS to take advantage of one of these services today.

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A Struggle for Balance Living with MS can often feel like a balancing act between work, life, injections, rest and doctor visits. But maintaining your balance while walking and standing can pose an even bigger challenge.

Most people living with MS eventually face balance and gait disorders, and the causes and symptoms of the disorders are different for everyone, according to Dr. Fay Horak, PhD, PT, professor of neurology, Oregon Health & Science University.

The most common reason for balance and gait issues in people with MS, Horak said, is that the disease affects sensory information. Sensory information from your joints and muscles come up to the brain too slowly, which makes the balance responses slow and leads to swaying or even falling.

Other reasons for problems with balance and gait include muscle weakness, spasticity, problems in the cerebellum (the part of the brain responsible for coordination), vision problems, dizziness caused by MS and more.

Luckily, balance and gait issues can be improved, and falls can be avoided.

“It’s important to keep moving, and to keep moving as much as you can,” Horak said. “Practice walking, practice balancing and standing, because no matter who you are, those things can improve with practice.”

Talk to a physical therapist to find the right exercises for you. They should be challenging, but they should also be safe.

She said the most useful thing you can do to prevent falling is to walk with an assistive device such as a cane or a walker, especially when you’re walking outside on uneven ground.

When you’re in your home, Dr. Horak says you can prevent falling by removing clutter, wearing shoes that aren’t too slippery or too sticky and are secured firmly to your feet and by installing railings.

“Some people with balance problems don’t fall because they do take care of their environment and they move slowly and carefully, making sure there’s always something to hold on to that’s stable,” she said. “So falls can be prevented even with a balance problem if you take a look at your home environment and make sure it’s safe.”

Get more tips for balance improvement and fall prevention and learn about Dr. Horak’s exciting research into balance by downloading our podcast at http://pae.podbean.com.

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CYGetting involved in the advocacy process can be a scary and overwhelming thought for many

people. So the chapter asked two interns to create new educational materials to show that producing change is a lot easier and more fun than you might think.

Anna Demeglio and Samita Pendse turned a detailed 39-page manual that lacked design into two aesthetically pleasing PowerPoint presentations and other short documents.

Karen Mariner, MSS, MSCIR, vice president of services & activism, oversaw the project and said the interns did a great job making sure the information was accurate and easy to understand.

“The idea isn’t just to engage people,” Mariner said. “The idea is to have people leading.”

That idea led her to create a new program for people to get involved in advocacy at the county level in teams, much like a Walk MS or Bike MS team. Each team will consist of one county captain and several county team members.

These teams will push agendas that are important to them in their counties. Wide participation in advocacy is crucial to

successfully affecting change, Mariner said.

“Advocacy is fun,” she added. “People never believe me when I say that. There’s nothing better than getting legislation signed and knowing the impact it will have. It’s such an awesome feeling!”

It doesn’t take a huge commitment to get involved. Having a short conversation with your legislators, recruiting new members for Action Alerts, providing testimony at township meetings or writing op-ed pieces can have a major impact, Mariner said.

These new materials will provide you with everything you need to know to get legislation passed.

“It’s easy to say you want to be a part of something, and what that means is different for everyone,” said Pendse, one of the interns. “Instead of running around in circles, this gives one vision.”

If you’d like to see these materials or become a county captain or team member, contact Karen Mariner at [email protected] or 1-800-548-4611.

MAKING ACTIVISM EASY, LOCAL

“Advocacy is fun...

There’s nothing

better than getting

legislation signed and

knowing the impact it

will have. It’s such an

awesome feeling!”

~Karen Mariner


Jackie Jackson is single-handedly responsible for putting elected officials across North Jersey in wheelchairs.

Her accessibility tours of government buildings have raised public awareness of the obstacles people with disabilities face on a daily basis and encouraged others living with MS to become change agents in their own communities.

Organization has been key to accessing public officials, she said. She created and developed an action plan that included a press release,

assessment sheets, evaluation sheets, a checklist and a to-do list.

Then she spoke with elected officials and other leaders in her town such as the mayor, police chief and city council.

“I challenged them to spend a day in a wheelchair and ‘roll with me,’” she said.

The reception from the participants was positive and Jackson notes that “they were all great team players and very sensitive to

the idea that people with disabilities have to struggle within their communities.”

Not only have elected officials welcomed the accessibility tours, but they have been well attended by the media, local leaders and the public.

“Everyone who has been with me on the accessibility tours is amazed at what they find and the struggles that people with disabilities face on a daily basis,” she said.

Jackson has already conducted three tours in Franklin Township, South Plainfield and Edison Township. She will be training the Greater Delaware Valley Chapter’s government relations committee to start accessibility tours in South Jersey, as well.

“I strongly believe that accessibility plays an important role in the lives of people with disabilities because it allows them to become independent and enjoy equal opportunity to public and private places and it fosters inclusion in American society,” Jackson said.

She encourages people with and without disabilities to become advocates and get involved.

“It is my personal goal to empower others living with MS to become their own self-advocates,” she said. “I believe that making social changes is my niche in life, and I will continue to be a champion for the cause.”

If you’d like to learn how to bring a wheelchair accessibility tour to your town, contact Karen Mariner at [email protected] or 1-800-548-4611.

WOMAN OPENS DOORS FOR ACCESSIBILITY AWARENESS

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Jackie Jackson at New Jersey

Lobby Day 2009


IS YOUR LEGISLATOR ON THIS LIST?The bipartisan MS Caucus serves as a forum for members of Congress, their staffs, related organizations and individuals to discuss critical health-care, disability, research and other issues affecting people living with MS.

In less than three years since the caucus was formed, MS activists have successfully secured $9.5 million in federal research funding and gained support for many other important initiatives.

While 117 senators and representatives have joined the movement to create a world free of MS, there are still hundreds who have not.

If you don’t see your elected officials’ names on this list, call, e-mail or write a letter asking them to join. Find out which members of Congress represent you and how to contact them at MSactiveNJ.org or MSactivePA.org.

Representatives

Robert Andrews (D-NJ)

Rush Holt (D-NJ)

Frank Lobiondo (R-NJ)

Donald Payne (D-NJ)

Steve Rothman (D-NJ)

Jason Altmire (D-PA)

Mike Doyle (D-PA)

Tim Holden (D-PA)

Tim Murphy (R-PA)

Todd Platts (R-PA)

Allyson Schwartz (D-PA)

Joe Sestak (D-PA)

Senators

Bob Menendez (D-NJ)

Robert Casey (D-PA)

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Walk MS is the rallying point of the MS movement. Help us inspire our participants to continue their involvement through advocacy after the walk is over.

We’re looking for volunteers to staff the advocacy tents and sign up people for Action

Alert at each of our 17 Walk MS sites. This is a great way for families or groups of friends to get involved.

New to advocacy? No problem. We’ll give you all the training you need to be successful.

To learn more or sign up, contact Karen Mariner at [email protected] or 1-800-548-4611.

Be an activist at Walk MS 2010


Many studies have shown gardening to be a therapeutic hobby. Gardening is a great way to get low-impact physical exercise, and just being in nature is known to reduce stress.

The work involved in gardening can be daunting for people living with disabilities. With MS, your physical ability may change, but there’s no need to give it up. Get back to gardening or try it out as a new hobby this year. It can be much easier than you think – just follow these tips from Thrive, an organization that

helps people with disabilities start or continue gardening.

1. Raise your flower beds. This enables anyone with limited space or limited ability to continue growing flowers and vegetables. You may need to ask someone for help initially raising your flower beds, but it only needs to be done once. The ideal height for a bed for seated gardeners is two feet. The width can also be two feet if it is accessible from one side only, or it can be increased to four feet if you will be able to work from both sides. For anyone who

is unsteady but ambulatory, an additional 12 to 18 inches of height helps give added support.

2. Update or adapt your tools: For most gardeners, long-handled and lightweight tools are preferable to those with short, thick and heavy handles. The extra length of the handles and the lighter weight of the tool help reduce stress on weak backs and enable you to work for a longer period of time without tiring.

For some, however, short-handled tools can be more useful. These tools can provide leverage and practicality for seated gardeners, and extra thick handles can help people with weak grips. An easy way to make the grips of your tools thicker is to add foam padding or layers of tape to their handles.

3. Use window boxes. Using window boxes instead of building regular outdoor gardens is an easy way for many people to enjoy gardening and brighten up their homes at the same time. They’re perfect for people who can’t afford to build wheelchair paths or have difficulty getting outside. Plus most gardening centers and nurseries offer a large selection for you to choose from.

4. Group your plants in short rows or small blocks. Whether you’re standing or seated, you will have an easier time reaching the plants for harvesting or weeding if you plant everything in short rows.

5. Start a vertical garden. Climbing plants, like vines, require very little space and reduce the need for bending and stooping.

TOP 5 tips for gardening with MS


Vertical gardens bring plants into easy reach for those in wheelchairs. All you need is a fence, wall or other area you can use to grow vertically. Some structures can provide places for hanging baskets as well. Vertical gardens can be placed indoors or outdoors.

Learn more at www.carryongardening.org.uk.

NEW INDICIA SAVES MONEY

You may have noticed that this newsletter and some brochures you receive from the chapter in the mail now carry the “Free matter for the blind or handicapped” indicia.

This federal designation allows organizations that serve people with visual impairment due to a disability such as MS to mail large-print publications for free.

By using this program, we’re saving money that we can put toward direct services in your community and research toward a cure.

RESPITE PROGRAM FOR MALE CAREGIVERS

The chapter will partner with Nancy’s House to host a two-day respite session for male MS caregivers from April 9-11. Enjoy restaurant-style meals, the company of other caregivers, stress-relief workshops and best of all, two uninterrupted nights’ sleep.

Break the cycle of exhaustion and isolation. Contact Malika Hook, community services manager, to reserve your spot at [email protected], 1-800-548-4611 or learn more at www.nancys-house.org.

© Quinn Dombrowski

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What has Jim’s diagnosis been like for your family?

It’s hard. It makes my four kids very caring. They get frustrated and they get tired, but my kids don’t think twice if Jim asks them to go upstairs and get his shoes, because he can’t climb the steps 10 times a day. In that respect, it’s been a blessing. I don’t think we view people the way we would have if MS had not been in our lives. If they see someone in a wheelchair, they look at you like, “Who are you?” rather than, “What do you have wrong with you?”

What gives you hope on the difficult days?

It could be so much worse, and we’re lucky to have what we have. On good days when he’s feeling hopeful, he can get up, he can do things and he can see and talk to the kids. My kids would rather have Dad here, even if he’s limited in some ways, than not to have him. We’re very well aware it could get worse. What keeps you going is all the things you do have, not the things you don’t have anymore or you’re losing.

What advice would you give someone else whose spouse is diagnosed?

Talk to somebody. Whether it’s MS or other things, it’s nice to know you’re not the only one. If they’re still smiling and laughing, it’s good to know why. In the beginning when we didn’t know anybody who was going through it and we weren’t telling anyone, it was hard. Now someone has braces, someone has glasses and Jim has MS. It’s just what we do.

Why should people with MS and those who care about them get involved with Walk MS?

It’s the idea you’re doing something. There’s so much of this disease that just happens to you, that you don’t have control over. Doing a walk

Face of MS: Dana KochDana Koch’s husband, Jim, was diagnosed with MS shortly after the birth of their first child. 18 years and three more children later, the whole family supports him by fundraising, walking and/or volunteering in Walk MS. In fact, the MSkuteers numbered 19 friends and family members at last year’s walk at North Penn High School in Lansdale. Below, Dana reflects on living as a family with multiple sclerosis and why Walk MS is such an important event for her as a spouse.

MSkuteers at Walk MS (Dana is second from right)

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What it does: The Bracelet Buddy works like an extra hand, securing one end of your bracelet while your free hand wraps it around your wrist and secures the clasp.

To buy: The Bracelet Buddy is $14.98 for a set of two at Amazon.com.

GADGET CORNER: Bracelet Buddy


or going to the conferences or getting out and raising money or putting a sign up to ask people to do the walk, all of those things just make you feel like it’s your time to take your stand and do your fight. You’ve done something, and something is always better than nothing.

I think all the time about the difference Walk MS makes when I’m reading the newsletter and see that somebody was able to get an air conditioner or a van. When Jim was first diagnosed, there wasn’t much available for treatments. Since then, so much more has come out. Every year, there’s something new. Every year there’s something on the horizon. Obviously the money is doing something.

YOU ASKED, WE ANSWEREDIf you’ve been to one of our workshops, you’ve probably filled out a brief evaluation of the program. You also may have asked questions on that form or made suggestions for our staff.

In this ongoing feature, we’ll answer some of the questions we have received from program attendees.

We would like to see programs on employment opportunities and depression.

Our MSWorks program has a full slate of teleconference programs coming up. See

the list on page 2 for more details and registration information. If you would like more information or one-on-one employment counseling, call Christina Forster, MA, CRC at 1-800-548-4611, ext. 141.

We also held a Webinar on depression and MS on January 26. You can access it online at http://main.nationalmssociety.org/Webinars.

Please list the self-help groups’ times and locations on the Internet.

You can find the times and locations of all our chapter’s self-help groups at http://main.nationalMSsociety.org/selfhelp.

RESO

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PRIDE QUANTUM 600 POWER WHEELCHAIR: Excellent condition. Power tilt seat system; Roho Quadtro Select high profile cushion; Invacare Personal Back with headrest; custom handmade padded wood armrests; and swingaway right-hand joystick. Small turning radius, easy to maneuver. Originally $13,000; asking $2,000 OBO. Leave message for Alan at 610-258-8880.

ACTIVE PASSIVE TRAINER: Wheelchair-accessible exercise machine, exercises lower or upper body for muscle strength, tone and flexibility. Terrific therapy for MS spasms/muscle-contracting legs. Asking $100. Leave message for Alan at 610-258-8880.

FLUIDIZED BED MATTRESS AND FRAME: Special 83” x 39” fluidized (bariatric) bed mattress. 2 years old, excellent for minimizing bed sores. Also has Invacare bed, older but fully functional. Separate controls for raising head, leg and whole bed and variable comfort control from soft to firm. Asking $750 or best offer; original price was $4,700 (must sell; am moving). Contact Phil at 856-430-0258 or [email protected].

INVACARE ELECTRIC WHEELCHAIR WITH CHARGER: Mint condition, top-of-the-line, 2 years old. Triple action electric movement - seat tilts forward and backward, left and right, and legs lift up. Designed to minimize bed sores. Leg rest has center post for a tight turning radius, making nearly any home accessible. Wheelchair base is “Storm TDX 4”. Originally $22,000. Asking $1,900 OBO (must sell; am moving) Contact Phil at 856-430-0258 or [email protected].

JAZZY 610 POWER CHAIR: Good condition, works great, fairly new, used only occasionally. Onboard and potential for offboard charger. Asking $1,000. Call Theresa at 609-383-0976.

1996 CHEVROLET CUSTOM CRAFT CONVERSION VAN: 104,000 miles, good condition. With RICON chair lift, V8 engine, power windows and locks. Interior has four captain’s chairs, center console and rear seat TV with PlayStation. Just passed inspection. Asking $6,999. Contact Joe at 215-285-8683.

ULTRA-CARE EXCEL ALTERNATING PRESSURE MATTRESS: Fits over mattress to minimize bed sores by alternately inflating and deflating. Used about three years, in working condition and fine shape. FREE. Contact Susan at 215-646-4975.

TUBE FEEDING SUPPLIES: The following supplies are available for someone using a PEG tube to receive their nutrition: eight cases (24 cans each) of Nutren 1.0; one month’s supply of catheter-tipped syringes and gravity feed bags (Ross #56 Easy Feed Enteral Nutrition Bag), drain sponges. FREE. Call Brian at 215-336-5264.

JET 3 ULTRA ELECTRIC WHEELCHAIR: Brand-new, with less than 10 hours of operation. May need new battery. Asking $1,500. Call Paul at 215-962-6719 or 215-357-9398.

RASCAL TRUNK LIFT: Brand-new, never-used hoist for lifting wheelchair/power chair/scooter into car trunk. Internally mounted, professional installation recommended. FREE. Call Robert at 215-755-1591.

Classifieds

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1-800-FIGHT-MSMoveForMS.org

How will youmake your mark?� WALK MS

� MUD RUN BRANDYWINE

� BIKE MS

� CHALLENGE WALK MS

Show your pride: Cut out this sign and display it in your window or someplace else visible to encourage others to learn more about MS.

1-800-FIGHT-MSMoveForMS.org

How will youmake your mark?� WALK MS

� MUD RUN BRANDYWINE

� BIKE MS

� CHALLENGE WALK MS

Show your pride: Cut out this sign and display it in your window or someplace else visible to encourage others to learn more about MS.

Free Matter for the

Blind or Handicapped

LEARN MORE ABOUT THIS NEW POSTAL INDICIA ON PAGE 27.

GET DIRTY FOR MS!MUD RUN BRANDYWINE JUNE 12

Learn more on Page 15 or MoveForMS.org.

Documents

MSConnection Issue 1 2010