MSConnection Issue 4 2009

INSI

DE

THIS

ISSU

E:IN

SID

E TH

IS IS

SUE:

Hands-on tips at wellness symposium Pages 8-9

Annual meeting recap Page 15

Conserve your energy during holidays Pages 18-19

2009 Issue 4 Greater Delaware Valley Chapter

Face of MS: Preston Harrison Page 24-25

CoNTINUED oN PaGE 6

WHEN IT COMES to primary-progressive MS, the days of “diagnose and adios” are long gone.

Decades ago, many physicians sent primary-progressive patients home with a diagnosis but without much hope for their future with the disease, said Dr. Andrew Goodman, chief of the Multiple Sclerosis Center at the University of Rochester Medical Center.

with primary-progressive MS

Kim, diagnosed in 1986

MANAGING SYMPTOMS, LIFE

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.

©2009 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 EVENTSWatch your mailbox or visit our Web site for more information about the following programs and events:

CLINICAL TRIALS: SOLVING ONE PIECE OF THE MS PUZZLE DECEMBER, JANUARY AND FEBRUARY

MAKING MS WORK JANUARY 21

DEPRESSION JANUARY 26

RESEARCH UPDATE FEBRUARY 18 & TBD

MS AWARENESS WEEK MARCH 8-14

SPRING WELLNESS SYMPOSIUM MARCH 24

WALK MS APRIL 25 & MAY 2

TO REGISTER or learn more, visit nationalMSsociety.org/pae.

IN B

RIEF

TOLL FREE NUMBER 1 800 548 4611 3

FIRST ORAL DRUG SUBMITTED TO FDA

EMD Serono has applied to the U.S. Food and Drug Administration for approval to market cladribine as the first oral disease-modifying therapy for relapsing forms of MS.

Cladribine tablets significantly reduced relapse

rates and other disease activity in a large-scale, late-stage clinical trial of people with relapsing-remitting MS.

“If the FDA’s review of oral cladribine finds it to be safe and effective for people with relapsing MS, it would represent a major treatment breakthrough – hopefully the first of many successful oral therapies in the pipeline,” said John R. Richert, MD, Executive Vice President of Research and Clinical Programs at the National MS Society.

POSITIVE RESULTS FOR FINGOLIMOD

Oral fingolimod significantly reduced relapse rates and slowed disability progression in a large-scale, late-stage clinical trial.

After two years, the drug

reduced the relapse rates by up to 60% and reduced progression of disability by up to 32%.

Novartis plans to submit an application for FDA approval of the drug by the end of the year. Other phase 3 clinical trials of fingolimod, including one involving people with primary-progressive MS, are still under way.

GENES FOUND THAT MAY TELL MS PROGNOSIS

A Mayo Clinic study has found that two genes in mice were associated with good central nervous system repair in multiple sclerosis.

The study was intended to identify genetic factors that determined why some people do well with MS and why others do poorly. These findings give researchers new hope for developing more effective therapies for people living with MS and for predicting the progression of their disease.

MS-LIKE DISEASE SUPPRESSED IN MICE

A new experimental treatment for MS successfully reversed the disease in mice, and may be useful in therapies for humans, according to researchers.

The new treatment, called GIFT15, utilizes the body’s own cells and puts MS into remission

by suppressing the immune response.

GENTLE TOUCH MAY AID IN EVERYDAY TASKS

Physical therapy researchers have found that people with MS use excessive force when they are lifting objects, and that regaining control and coordination may be as easy as applying a gentle touch to the affected hand from a finger of the opposite hand.

The researchers tested subjects gripping and lifting a variety of objects that they moved in several different ways, directions and velocities. The gentle finger touch always helped to reduce grip force, making the task easier.

BIOMARKERS FOR MS IDENTIFIED

Spanish researchers have identified possible biomarkers linked with multiple sclerosis.

The discovery may lead to a new tool for diagnosing MS, allowing for earlier treatment of the disease. The biomarkers also could identify relapses and lead to new therapeutic targets.

Biomarkers are molecules that indicate a particular disease state. The scientists found a combination of 10 that can help detect MS.

IN B

RIEF


First, I would like to thank those of you who have given me such a warm welcome since joining the Greater

Delaware Valley Chapter on October 1. Given the economy, many of you have mentioned that it is a challenging time to step in to a leadership role at the chapter.

As some of you may know, the Chinese word for “crisis” is composed of two characters: one means “danger”; the other means “opportunity”. Together, the two characters can literally be translated into English as “precious moment.”

It may not feel like it, but this is a precious moment for those of us who are truly committed to creating a world free of MS. The economic downturn has given us the opportunity to take a hard look at how we raise money and how we use funds to help local people living with MS.

Chapter staff and board of trustees are in the process of evaluating everything we do in order to give as many families living with MS as possible the assistance and support they truly need.

However, as important as services are, our commitment to funding critical scientific research has not changed. In fact, I am pleased to announce that the chapter board voted to fully fund a pilot grant of $650,000 for a full-scale longitudinal study of the risk factors for MS progression.

As many of you know, research of progressive MS is critically underfunded, which is why we are proud to be able to make this commitment. Without the help of our chapter, the project would not have been able to proceed.

So, despite the economic situation, we are doing everything we can to move forward. But, our progress as a community depends on our ability – staff, trustees, people living with MS, family and friends – to work together towards our common goal of a world free of MS.

I encourage you to reach out to the chapter in the coming months to let us know more about the challenges you face and how you plan to join the movement. This is a precious moment; let’s make the most of it.

President’s Message: Making the most of a precious momentLE

TTER

S

Tami Caesar, President


LETTERS

Dr. David Tabby who was just featured in MSConnection is my doctor, and not only is he a great doctor, he is a GREAT person. I knew this, but yesterday I discovered that

on his weekend off, he rode the PA Dutch Ride, which absolutely blew me away.

While giving the luggage to the riders as they came back, another thing happened that needs to be brought to light. Whether it was my 12-year-old son or myself giving back the luggage, I thank mostly everyone for doing the ride. Everyone responded with a thank you for volunteering. They didn’t need to know that I have MS. They were just incredible people helping out a great cause.

Thank you to the Society, my amazing wife Dana, son Sawyer and the countless people I don’t know for giving of themselves. It is noticed and appreciated.

~ Jim Koch

The brief article linking MS and certain types of cancer could be the difference between life and death for people like my mother and me.

While my mother never considered herself to be a person with MS, she was diagnosed twice with the disease, once in the early 1980s and confirmed in early 2008. I received my diagnosis in 1995.

In August 2008, my mother was diagnosed with bladder cancer, one of the cancers people with MS have up to 44% greater risk of developing. Had my mother known this, perhaps she would have heeded the warning signs of bladder

cancer. She may have been diagnosed and treated sooner.

Unfortunately, she was not diagnosed until the cancer became highly aggressive. My mother lost her battle with bladder cancer on May 30, 2009.

The knowledge that having MS may increase my risk for bladder cancer, among other cancers, means others with MS and I must be vigilant. Learn the warning signs and get screened for the disease. If this information saves one life, my mother’s death will not have been in vain.

~ Susan Decoteau-Ferrier

As someone living with MS, I have difficulty writing, so I’m always on the lookout for pens that can make this task easier. One day recently, I borrowed a pen from a deliveryman and was amazed at how easy it was to use.

The deliveryman gave me his pen and I called the company stamped on it, Restore Physical Therapy of Marlton, to see where I could get more.

I told Lauri Donnelly at Restore how wonderful the pens were, despite the short circuit MS creates between my brain and my hand. To my surprise, she not only told me who made them, but she insisted on sending a dozen more to me for free.

I’d like to thank Lauri and everyone at Restore Physical Therapy for their generosity and encourage people living in South Jersey to repay their great kindness.

Sincerely, Nancy Martin


PRO

GRE

SSIV

E M

S

Today, things are different.

“We work with people over the years as things progress and MS gets more complicated and complicates people’s lives,” he said. “We’re going to be with you through this journey.”

While there are no approved therapies to halt or reverse the damage caused by primary-progressive MS, there are medications and devices that can help people manage their symptoms and stay active and engaged in their lives.

When he’s working with someone with the primary-progressive course of the disease, Dr. Donald Barone, director of the MS Center of South Jersey, emphasizes that progression, as a rule, is very slow. As people encounter increasing levels of disability, he encourages them to make use of adaptive and mobility devices such as walkers and scooters.

“There are no words that take away the pain people experience as they see their physical functioning declining,” he said. He tells them, “We have the tools to cope with it and we’re going to help them move on with their life.”

Barone’s first step when meeting new patients with primary-progressive MS is to take a very thorough history. If there’s anything that suggests possible exacerbations in their past (which could indicate the relapsing-remitting course), he starts them on disease-modifying therapies. He also rules out MS mimics, diseases that wouldn’t be helped by the disease-modifying therapies.

Barone then looks at symptom relief. People with primary-progressive MS typically have difficulty walking due to spasticity. They also may have bladder problems that require treatment and must be monitored for urinary tract infections. He recommends physical therapy or exercise and keeps an eye out for depression.

Goodman said he’s often struck by how undertreated people with primary-progressive MS’ symptoms are. Some have never been treated for fatigue or seen a therapist for any kind of orthotic device.

People should be proactive when talking with their doctors about their care, he said.

“They can say, ‘I understand there is no proven immune system treatment to help, but I have problems with my bladder, problems with spasticity, problems with my balance, fatigue. Isn’t there something we can try?’”

PROGRESSIVE MSCONTINUED FROM PAGE 1

We have the tools to cope with it and we’re going to help them move on with their life.


PROG

RESSIVE M

S


One of the most promising treatments could be approved by the U.S. Food and Drug Administration as soon as January. Fampridine is the first therapy to be designated specifically for symptomatic relief in MS.

In addition to being able to walk faster, people in clinical trials said they could handle stairs better, walk longer distances and be on their feet longer, said Goodman, the trials’ lead

investigator. The majority of clinical trial participants had either secondary or primary-progressive MS.

“This helps people move better,” Goodman said. “That’s an important thing for people living with MS. Hopefully it will help a lot of people.”

When Dr. Andrew Goodman speaks to groups of people with primary-progressive MS, their frustration is palpable, he said.

“The question I get repeatedly is, ‘How come there’s no disease-modifying treatment for me?’” said the Rochester neurologist. “It’s not for lack of interest.”

Scientists have been able to learn more about relapsing-remitting MS, and as a result, they have developed a whole host of strategies to tackle the way the immune system functions in relapses and limit the number of inflammatory attacks, Goodman said.

The current treatments don’t appear to adequately address the disease process in progressive forms of MS, he said. The reason why is the subject of some debate.

The problem could be that people with primary-progressive MS experience a different kind of inflammation. Or it could be that the disease process isn’t inflammatory at all, but rather a different kind of neurodegeneration, he said.

As some scientists seek to answer that question, other researchers studying spinal cord injury and stem cells are putting a tremendous amount of energy into restoring neurological function, said Dr. Donald Barone of the University of Medicine and Dentistry of New Jersey. Those developments could help reverse the damage caused by MS.

Researchers also are striving to find new ways of measuring success in clinical trials. While it’s easy to see a drug’s effect on numbers of relapses, progressive courses of the disease can proceed at such different rates that it’s difficult to measure a drug’s clinical benefit, Barone said.

He hopes researchers will be able to find a marker on MRIs or a blood test that will indicate whether a drug is having a favorable impact.

He encourages people with primary-progressive MS to have hope.

“Those of us in the MS community have not forgotten them,” Barone said.

The barriers to therapies for primary-progressive MS


W

ELLN

ESS

While some days may feel full of obstacles, there’s so much people living with MS can do to stay healthy and boost their wellness.

That’s the focus of the Spring Wellness Symposium on Wednesday, March 24 at the Pennsylvania Convention Center in Philadelphia.

We are pleased to welcome “Can Do Multiple Sclerosis,” formerly known as the Heuga Center for Multiple Sclerosis, back to the region to present the symposium.

The organization, which provides lifestyle empowerment skills for people living with MS, received rave reviews for its JUMPSTART workshop in Allentown, Pa. in September 2008.

The new name, “Can Do,” is founder Jimmie Heuga’s rallying charge, said Nurse Educator Pat Kennedy. The group’s presentations focus on providing practical knowledge that participants can incorporate into their everyday lives.

Guests at the Spring Wellness Symposium will take home ideas including how to cook healthy meals with a minimum of effort, simple exercises to work into their daily routines and how to build their inner resiliency.

The workshop in Allentown was extremely hands-on, said Pam Taylor, who attended

with her husband.

“That made it more fun, and I think it’s a really good thing for people to realize that no matter what your level of ability, you can do things,” said Taylor, who has MS. “You can be active on some level – and it’s really important.”

Following last year’s session, Mary Sypawka started physical therapy for the first time in the 16 years since her diagnosis. As a result, she has moved from having a high risk of falling to a low risk.

“No one had ever suggested physical therapy before,” she said. “It has been a very, very positive experience.”

Sypawka is excited about hearing more from Can Do MS at the Spring Wellness Symposium.

“They seem to hit MS from every perspective – diet, exercise, emotional well-being,” Sypawka said. “That’s the way I choose to live and that’s the way they approach MS, which I think is awesome.”

Wellness symposium offers hands-on advice for living your best with MS

TOLL FREE NUMBER 1 800 548 4611

KEYNOTE SPEECH: Integrating wellness into traditional medical therapies

CONCURRENT SESSIONS

n Spirituality: Learn to harness your inner strength and the tools you carry within yourself. Develop your inner resiliency.

n Nutrition: Learn the practicalities of cooking with MS. Get recipes and learn how you can prepare healthy meals without wearing yourself out.

n Exercise: Learn to look within your abilities to find a routine that works for you. Find out how to address fatigue, heat and physical limitations and use adaptations to exercise.

n Caregivers: Psychologist-led group discussion on topics of interest to caregivers.

REGISTRATION OPENS FEBRUARY 1, 2010

WELLN

ESS

Spring Wellness SymposiumPRESENTED BY

“CAN DO® Multiple Sclerosis”

Wednesday, March 24, 2010 Pennsylvania Convention Center Philadelphia, Pa.

NEW HELP TO NAVIGATE HEALTH CARE

The Greater Delaware Valley Chapter is pleased to announce the expansion of its care management service for people living with MS.

The chapter has hired two social workers, Melissa Bruno and Anne Day, to manage and coordinate clinical and long-term support resources.

Melissa and Anne will work with care managers to help people living with MS navigate the health-care system and act as their advocates to help them secure vital services.

If you’re having difficulty coordinating your medical care, call us at 1-800-548-4611.

Melissa Bruno

Anne Day

9


It is important that people living

with MS take care to avoid being

taken advantage of – and stand up

for themselves if they suspect any

wrongdoing, said Eugene King, a

financial planner in Feasterville, Pa.

King is all too familiar with the effects of MS; his late daughter had multiple sclerosis, and he has spoken about finance at many self-help groups and chapter workshops.

People living with MS may be cognitively impaired or too preoccupied with other issues to pay close attention to their finances, he said. Or, if they do become victims of crime, they may not know how to reach out for help.

He offers a few tips for getting and staying out of trouble financially:

n Know who to contact at your county, regional or state consumer protection agency, and reach out if you feel that someone is taking advantage of you. You can find a directory of state and local agencies at consumeraction.gov/state.shtml.

n If you suspect identity theft, file a criminal complaint with the appropriate law enforcement agency. Learn more about identity theft at ftc.gov.

n Keep your credit cards under control and keep photocopies of the front and back of all your cards. That way, if one is stolen, you’ll have the exact details, including the card number and the company’s phone number.

n Protect your identity when you’re ordering personal checks. Never include your phone or social security numbers, and print only your first and middle initials and last name. That will make it harder for thieves to judge your gender and forge your signature.

n If you’re having work done on your home, get three estimates and check with the Better Business Bureau and Consumer Protection Agency to make sure the contractors are reputable. Find your local bureau at BBB.org. In Pennsylvania, new laws require contractors to be registered and licensed with the state.

n When dealing with home care providers, be sure to check the home care aide’s credentials. Ask the National MS Society for recommendations of reputable service providers.

FIN

AN

CES KEEP A WATCHFUL EYE ON


n Not all credit counselors are looking out for your best interests. “You’ve got to be very careful to watch out for shysters out there who hold themselves out as nonprofits,” he said.

If you’re in trouble, King recommends the Consumer Credit Counseling Service of Delaware Valley, a 501c(3) nonprofit that provides services in Philadelphia, Montgomery, Bucks, Delaware, and Chester counties and in New Jersey’s Burlington, Camden, Gloucester, Salem and Cumberland counties. Learn more at cccsdv.org.

FINA

NCES

YOUR FINANCES

PHONES AVAILABLE FOR PEOPLE WITH DISABILITIES

Pennsylvania’s Telecommunication Device Distribution Program (TDDP) gives free telephones to eligible people who live in Pennsylvania and need a phone with features to help with a disability.

A variety of equipment is available, including voice activated dialers, remote control speaker phones that can be independently activated with a puff of air or a pillow switch, photo phones, large button phones and amplified phones.

For more information, contact the TDDP at 215-204-5966 (voice/TTY), toll-free at 1-800-204-7428 (voice), 1-866-268-0579 (TTY), [email protected] (e-mail), or visit www.disabilities.temple.edu/programs/assistive/tddp.

GO ONLINE FOR SOCIAL SECURITY SERVICES

Social Security offers a variety of online services that have earned high marks in customer satisfaction.

The Retirement Estimator, which provides immediate retirement benefit estimates based on your earnings record to help you plan for retirement, has the top score in the federal government. Check it out at www.socialsecurity.gov/estimator. Also earning high marks from the public are the online Retirement Application and Medicare Extra Help Application.

Much of the online information is available in Spanish and 14 other languages. Many documents are also accessible to people who use screen readers, screen magnifiers and voice recognition software.

Try out the best online services in government for yourself at Social Security’s Web site, www.socialsecurity.gov.

11


NEW

S

Ramping up for MS Awareness WeekLast March, the chapter surprised commuters at Philadelphia’s 30th Street Station with an impromptu demonstration of how MS stops people from moving.

For five minutes, the members of Philly Improv – both adults and children -- became human statues. The demonstrators drew curious stares and a few imitators. Check it out at http://main.nationalMSsociety.org/awareness.

You can join the fun. The chapter is working with the organization on a bigger and better “flash mob” for next year’s MS Awareness Week, March 8-14.

We’ll also hold advocacy days at the New Jersey and Pennsylvania state capitols. These Lobby Days are great opportunities to learn more about MS advocacy, meet with legislators and see government in action.

Do you have a great idea to raise MS awareness? Do you want to join the flash mob or advocacy fun? Contact us at [email protected] to get involved.

MAKE FLU SHOT A PRIORITY THIS SEASONFlu season is receiving special attention this year, due to concerns over the H1N1 (swine flu) virus.

Flu vaccines are safe – and highly recommended – for those with MS as long as a killed or deactivated vaccine is used. The injected flu shot is made this way.

A nasal spray called FluMist Intranasal is not recommended for people with MS, especially for individuals taking Novantrone, Cytoxan, Imuran, or methotrexate, because it uses a weakened live vaccine.

FluMist is considered safe for healthy children and teens, ages 5-17, and for healthy adults, ages 18-49. All others must roll up their sleeves for an injection.

The vaccine for seasonal influenza is available throughout the region; talk with your doctor about obtaining a regular flu shot.

You should also discuss with your neurologist whether you should get the H1N1 vaccination; people living with advanced MS or who have reduced pulmonary function are considered good candidates for the shot.

Flu is a menace, but not a reason for panic. Flu shots work. Additional wise practices include careful hand washing before eating, plenty of rest and a diet rich in fruits and vegetables.


SYMPTO

MS

AN MS PAIN CHECKLIST SPEAK UP. MS pain is real. More than half of all people with MS experience pain at some time or another. A best first step is to describe it. Make a list of when it kicks up, where it is in the body, and what it feels like. Tingling, burning, aching, stabbing, whatever. This will help a physician make a diagnosis. See next item!

GET AN ASSESSMENT. Take the list to a physician who will work with you to figure out if your pain is muscle-and-bone pain (usually from posture problems), neurologic pain (from short circuiting nerves), or spasticity (common in people with MS). If necessary, refer your professional to “Pain in Multiple Sclerosis” on nationalMSsociety.org. Click “For Professionals” in the gray banner at the top.

FOLLOW A REGULAR PAIN MEDICATION SCHEDULE. If you are prescribed a pain

med, take it according to a schedule, not after pain gets going. Many people try to tough it out, believing less medication will be better, but medications don’t work as well if taken after pain has started.

TAKE A “WHOLE PERSON” APPROACH. Regardless of the type of pain or the therapy prescribed, other things can be added to reduce pain’s impact: meditation, music, humor, hypnosis, massage, behavioral therapy, exercise, relaxation techniques, yoga. Discuss options with your provider.

CONNECT WITH OTHERS. Most people find life easier when they learn more about MS pain and reach out to others to share successful coping. Go to the yellow “Symptom Information” box on our home page, click on Pain, and review the resources. And call us at 1-800-344-4867.

The Society connects onlinePeople with MS and the people who care about them are discovering the

potential of Facebook to raise awareness about the disease and connect with others sharing the same experiences.

More than 20,000 people are sharing their feelings and concerns on the Society’s fan page at facebook.com/nationalmssociety. It’s a space where people ask questions they don’t necessarily feel comfortable asking a professional, such as how to manage fatigue

and a toddler, or if there’s any merit to an herbal tea.

The Greater Delaware Valley Chapter also has a Facebook page at facebook.com/greaterdelms. The page is a great resource for the latest research news and local events.

You don’t even have to join Facebook to view the Facebook pages, so visit them today.

Follow the Society on Twitter, too! Find the chapter at twitter.com/greaterdelms and the Society at twitter.com/mssociety.


GO

LDEN

CIR

CLE

The National MS Society is excited to announce the national launch of the Golden Circle – a special place for people with a special commitment to a world free of MS.

On behalf of everyone affected by multiple sclerosis, the National MS Society has created a membership program acknowledging the important support of individuals who truly make their mark against MS by making an annual gift of $1,000 or more.

Members of the Golden Circle receive unique benefits, including:

n unmatched access to breaking research news

n invitations to research briefings, lab tours, programs, events and the chapter’s annual meeting

n the ability to restrict your gift to local programs or research

n recognition as a leader in the MS movement

The Greater Delaware Valley Chapter invited prospective members of the Golden Circle to a research reception in conjunction with the annual meeting and research update in November.

Guests mingled with chapter board members,

national executives and other high-level donors and learned how their contributions are making a difference on the research horizon.

“Many valuable MS research projects that have been developed and approved by the Society are still awaiting funding – we give to the National MS Society to help realize their full potential,” said founding members Pamela and Brian DiDonato.

G O L D E N C I R C L E AC K N O W L E D G E S M A J O R S U P P O R T E R S

Michael, diagnosed in 2004

T O M A K E A D O N A T I O Nor for more information, call

Kristina Fransel at 1-800-548-4611.


More than 200 members of the Greater Delaware Valley Chapter attended its 2009 Annual Meeting and Research Update on November 12 in King of Prussia, Pa.

Hosted by Larry Kane, the evening featured the re-election of the volunteer board of trustees and the presentation of Volunteer Hall of Fame Awards to Janice Park and Lisa and Barry Steinman (see photos). Another highlight of the event was a research update presentation from Dr. Patricia O’Looney.

Dr. O’Looney, the vice president of biomedical research for the National MS Society, walked the audience through the most recent advances in the science of multiple sclerosis and some of the organization’s research priorities for 2010.

One area of focus for Dr. O’Looney’s team is examining risk factors and identifying triggers of MS.

“When someone is diagnosed with MS, the first symptom probably appeared five years prior to their diagnosis,” O’Looney told the crowd at the Crowne Plaza. At that point, “the trigger, whether it’s a virus or an environmental factor, could be long gone.”

The research team also wants to know why progression is so different among people living with the disease. Consequently, the Society has begun a longitudinal study to find some answers to the many questions surrounding progression.

However, the pilot study would have been a victim of the economy if not for the Greater Delaware Valley Chapter, which has committed to providing $650,000 for the project for 2010.

“This chapter has always gone above and beyond, in terms of funding national research programs,” O’Looney said.

2009 ANNUAL MEETING AND RESEARCH UPDATE

Janice Park, shown here with outgoing Board Chair Jeff Petty, was inducted into the national Volunteer Hall of Fame for her work with her Let’s Talk MS support group, Walk MS and Bike MS. In 2009, she was also named the Bike MS Champion of the Year.

Barry and Lisa Steinman, shown here with Larry Kane, were inducted into the national Volunteer Hall of Fame for hosting their Get Masked fundraiser that has generated more than $400,000 since it started in 2004.

AN

NU

AL M

EETING


Learning you have MS can raise issues not only within your personal life, but your professional life, as well.

This program is designed for people who are currently employed to discuss their day-to-day challenges and successes, as well as their approaches to concerns such as:

> When is the right time to tell your employer you have MS?

> How do you juggle your work schedule with staying healthy?

> How can you receive the accommodations you need without compromising your co-workers’ perceptions of your abilities or commitment?

> How long can you continue to work?

During the program, attendees will have the opportunity to meet other people living with MS who are also in the work force. This is a great way to network and make connections. Be sure to bring plenty of business cards to exchange with the people you meet.

Making MS WorkThursday, January 21 Seasons 52 2000 Route 38 Cherry Hill, N.J. 08022

Registration: 5:45 p.m.Program: 6 p.m.Heavy hors d’oeuvres will be served.

REGISTER BY calling 1-800-FIGHT-MS and pressing option 1, 9 a.m. to 7 p.m., Monday to Friday, or visiting http://main.nationalMSsociety.org/wellness.

MANY THANKS TO ALL OF OUR VOLUNTEERSEach year, the Greater Delaware Valley Chapter depends on the generosity of thousands of volunteers who devote their time and energy to making our events successful.

You plan 16 amazing Walk MS events, rise before dawn to serve 7,000 cyclists and journey 30 miles with our Challenge Walkers.

Your dedication is critical to creating a world free of MS for the 11,000 local families living with the realities of multiple sclerosis.

Thank you to all of our volunteers for being so giving of your time and so committed to our cause.

If you or your group would like to volunteer in 2010, please call Kathie Cronk at 1-800-548-4611 or e-mail her at [email protected].

PRO

GRA

MS


The Greater Delaware Valley Chapter

thanks Dr. Clyde Markowitz for three

years of service as the chairman

of the chapter’s team of medical

advisors and welcomes Dr. Thomas

Leist as incoming chairman.

Two new physicians also have joined the committee: Dr. David Jones, director of the MS Center of the Lehigh Valley and Dr. Dina Jacobs, assistant professor of neurology at the Hospital of the University of Pennsylvania.

The Clinical Advisory Committee (CAC) is a multi-disciplinary committee of health-care professionals who share their expertise on the medical needs of people living with MS with chapter staff and assist in the education of medical professionals.

These physicians have dedicated their professional lives to helping people living with MS.

Markowitz, director of the MS Center at the Hospital of the University of Pennsylvania, has been a frequent speaker at workshops and panels for people living with MS, as well as professional education forums. He also has lent his voice and experience to activism on behalf of people living with MS.

In 2007, as local insurance plans began tiering their MS therapies, he took an active role in fighting the system’s inequities.

His outreach as the chapter’s clinical advisory committee co-chairman paved the way for a productive dialogue between the Society and insurance officials about MS coverage now and in the future.

And in 2006, when Pennsylvania considered requiring Medicaid recipients to fail all other therapies before approving Tysabri, Markowitz provided written testimony on the impact this would have on people living with MS. Portions of his testimony were singled out in the state’s response. As a result, the state redefined its position.

As director of the Comprehensive MS Center at Thomas Jefferson University, Dr. Leist takes a holistic approach to treating MS, combining medical care with social workers, physical therapists, counselors and other members of the treatment team.

He has spoken at dozens of chapter events and held many of his own educational programs for residents and attending physicians at Thomas Jefferson. He also has reached out to educate other members of the health-care community, including social workers and care managers at Horizon Blue Cross Blue Shield.

CHANGES IN CLINICAL ADVISORY COMMITTEE

Dr. Clyde Markowitz

Dr. Thomas Leist

LEA

DERSH

IP

17


TOP 5 ways to conserve your energy during the holidays

BY JERRY WERNER, COTA/L, MSCS

MS Wellness Program Coordinator, Good Shepherd Rehabilitation Network

Conserving energy during the holidays involves both a mental and physical

approach. Physical activity and mental stress can give a one-two punch that saps energy reserves when you have too many things to accomplish.

Think of energy as money. Budget your spending carefully, especially if you don’t have a lot to go around. Every stress event and each body movement is a withdrawal from your energy account.

Become an efficiency expert. Applying the following principles to conserving energy during the holidays can help make the season more enjoyable for you and your family!

1. Establish realistic expectations for your holiday celebration

Trying to be like Martha Stewart can set us up for energy overextension and disappointment. Be realistic about your energy levels and frank with yourself and with your family about what you can accomplish. Discuss plans with your family and choose simple ways to meet your needs and theirs.

Remember, holidays can be filled with a variety of emotions that can drain your energy reserve, as well as physical exertion. Don’t be afraid of re-evaluating holiday expectations, setting realistic approaches and getting everyone on board with the new plans.

2. Plan and pace yourselfMake a daily or weekly list of holiday prep activities and spread light and heavy tasks throughout the day and/or week. Set priorities and do the most important items first. Use high energy times of the day or week for more physically difficult or mentally taxing tasks.

Pace your activities and work at a moderate rate. Rushing to finish tasks or trying to fit everything in before you collapse takes a toll on the body and emotions. Planning far in advance will help you stick to schedules or make changes if necessary.

Always rest BEFORE becoming exhausted. If you work until you are exhausted, it will take longer to recover. However, sitting or lying down to rest will not restore your energy if you are full of worry. Clear your mind and relax mentally as well as physically by breathing slowly and deeply. Learn to let go of the guilt you might feel for not finishing a task.

3. Conserve energy while holiday shopping

The ideal way to shop for gifts and supplies for the holidays is to use the computer for online purchases. Comparing prices and shipping


costs can help you get the best price and door-to-door delivery from the comfort of your own home.

Using ergonomically correct posture at the computer will promote proper body alignment, which reduces neck, back and eye strain. Take frequent stretch breaks while surfing the web.

If you choose to shop at the mall, using a scooter or walker with a seat helps you cover more territory and conserves energy. Shop at times when the crowds are at a minimum. You will receive better service and move about more easily.

Making a shopping list and planning your shopping strategy makes the most of your limited energy. Plan menus before going to the grocery store and take your list with you. Use the electric carts provided by the grocery store and call ahead to make sure they are in operating order.

Pack all frozen foods in one or two bags so you can take them into the house first and put them away. The dry goods can wait in the car until you rest. Or, better yet, utilize food stores that will do the shopping for you and give home delivery. Get help with this task; it can be exhausting.

4. Use energy-saving devicesThere are numerous energy-saving devices on the market today. Evaluate what daily tasks are tiring for you and investigate energy saving devices to make tasks easier. Tub seats, reachers, dressing devices, crock-pots, blenders, bread makers, microwaves,

scooters, canes and strategically placed grab bars and hand rails by steps, hallways, doors and tubs help reduce the need to expend extra energy to accomplish everyday tasks. Sit while showering; use long handled sponges to avoid bending while washing your legs and feet. Even though you might not need some of these devices, being proactive helps you conserve valuable energy which then can be spent doing something fun.

5. Enjoy holiday entertainingHolidays are all about family, togetherness and fun. Offer friends the opportunity to join in the celebration by preparing their favorite recipe for a potluck dinner. This takes the burden away from preparing the entire meal. The goal of holiday entertaining is to enjoy the company of others and survive without exhaustion. Keeping plans simple, from meals to decorations, is the key to conserving energy. Plan to include leisure time – don’t leave it to chance. Having the whole family participate will enhance the enjoyment of holiday entertainment.

TO

P 5

19


PROFESSIONAL RESOURCE FOR SOCIAL WORKERS, CARE MANAGERS

The Greater Delaware Valley Chapter invites social workers and care managers who provide services to people living with MS to join us for “Coffee & Cases.”

This informal group is designed as a forum for talking through challenging cases, sharing ideas and learning more about the disease courses and the Society’s services.

We hope members will build their MS expertise while networking and learning from each other.

If you’re interested, please contact Melissa Bruno at 1-800-548-4611 or [email protected].

SOCIAL WORKERS PROVIDE PRO BONO CARE

Many thanks to Judy Heller and Harriet Ball, two clinical social workers who have agreed to provide pro bono counseling to clients living with MS.

We are still growing this program and are currently looking for social workers, therapists, psychologists and psychiatrists who can help our clients living with MS. Please contact Malika Hook at 1-800-548-4611 or [email protected] to learn more.

Advocacy efforts are most effective when they start at the ground level and address the issues people living with MS are facing every day.

To that end, we’re launching the MS Activist County Captain program. County captains are leaders who oversee advocacy efforts in their counties. They’re responsible for building a core team of key volunteers and coordinating activities such as:

> developing the local Action Alert network

> identifying local issues that need statewide action

> writing letters to the editor

> legislative visits

> staffing advocacy tables at MS fundraising and educational events

> ensuring the MS perspective is represented at local government meetings and on local committees

We’re recruiting county captains for a pilot program in New Jersey in 2010. We’re looking for county captain candidates who are organized, have great time management skills and have leadership experience with other organizations.

If you’d like to learn more, contact Karen Mariner at 1-800-548-4611 or [email protected].

County captains mobilize grassroots activismA

DV

OCA

CY


What are your legislative interests and priorities?

The biggest one right now is that we are still advocating for the REACH scholarship. It’s basically that any kid in the state who gets a cumulative 3.0 GPA in 10th, 11th and 12th grade and has 90% attendance would be able to attend any one of state system schools virtually for free. The state would then cover the tuition. It’s very similar to Georgia’s HOPE scholarship fund.

Tell me about your work with the Partnership to Fight Chronic Disease.

What we’re trying to do in the district is raise awareness to a number of issues relative to one’s health, whether it be diabetes, asthma, hypertension or making sure people understand their insurance and what resources are available to them in the community. The Partnership is doing a ton of work in educating people about chronic diseases and it fit right in.

Do you have any personal connection to MS?

I’ve done the MS walks four or five times. You have a lot of people who are passionate about making sure the research is done, and that’s extremely important because I think that it’s a terrible disease to have and I’m hopeful that we can find a cure.

What’s the best way for constituents to work with you?

The best way is either to call us up at the office or come into the office. We’re certainly open to many things and we listen. All it takes is a phone call or a visit and you’ve got our attention.

What’s something a lot of people don’t know about you?

I’m a fairly decent tennis player. A lot of people don’t know I used to be a standup comedian.

MEET YOUR LEGISLATORRep. Tony Payton 179th District, Pennsylvania

AD

VO

CACY

Map of the 179th district in Philadelphia


Regina Duggan was the life of her family, a

jovial woman who loved a good practical joke.

When she died last year in Ireland from complications of her steroid treatments for MS, her cousins in the United States decided to raise money for the

National MS Society in her memory.

They teamed up with Ken Merriman of the Irish pub Tir Na Nog, who organizes an annual golf outing each year and donates the proceeds to a charity. Together, they raised more than $16,000.

“It was very satisfying personally to be able to pull that rabbit out of the hat, especially in

this current economic climate,” said Declan Duggan, one of Regina’s cousins. “It means a lot to us to be able to do something of that magnitude in her name the first year out.”

In addition to the golf outing, the organizers planned a silent auction at the Dark Horse, another pub, featuring premium prizes and unique sports memorabilia from many of the guests’ hometowns (from the Miami Dolphins to the Boston Red Sox).

After the auction, Duggan told the guests about Regina and toasted her with glasses of the cheapest champagne in the house, “because that’s what she loved.”

Golf outing raises $16K in memory of Irishwoman

COMMUNITY FUNDRAISERS are a great way to raise money and awareness among your friends and family members while doing something you all enjoy.

Proceeds can be donated to an event team or directly to the chapter.

To learn more, visit nationalMSsociety.org/pae and click on “Fundraising events” on the left or call 1-800-548-4611.

Help drive away MSAUTOS-4-MS allows individuals and organizations to donate their unwanted vehicles to help people living with multiple sclerosis. We accept cars, trucks, trailers and motorcycles. We also accept recreational vehicles upon inspection.

Don’t delay – donate your vehicle today! For more information, contact us at 1-800-548-4611.

Regina Duggan

FUN

DRA

ISIN

G©

chi

spita

_666


FU

ND

RAISIN

G

Workplace giving programs provide an easy way for you to make your contributions to help support the fight against multiple sclerosis. The National Multiple Sclerosis Society partners with Community Health Charities in both the public and private sector. You will find our listing under the Community Health Charities Federation. If you don’t find us, ask your employer to add our name.

PUBLIC SECTOR

Federal employees can support the National Multiple Sclerosis Society through the Combined Federal Campaign by selecting the designated code #94068 in Pennsylvania or #11409 in New Jersey under the Community Health Charities Federation.

Other public sector employees can designate the National MS Society through the State Employees Combined Appeal (SECA) #2000-0018, and the City of Philadelphia Employees Combined Campaign #14-0024, as well as other community campaigns. Check your local listings or call the National MS Society for assistance.

PRIVATE SECTOR

Your company may have an individual corporate gift program or participate through the Community Health Charities Federation or United Way.

UNITED WAY CAMPAIGN

Individuals can choose to designate their payroll deductions to the National MS

Society through the Donor Choice Program. Simply ask your United Way coordinator for a donor designation form. The Greater Delaware Valley Chapter's designation for the United Way of Southeastern PA is 00243. For all other United Way agencies, please consult the organization's listing or contact our chapter directly.

COMMUNITY HEALTH CHARITIES

Payroll deductions allow you to give to the National MS Society through

Community Health Charities. Consult your organization's listing in order to participate.

W O R K P L A C E G I V I N G : an easy way to fight MS

Thank you for thinking of the National MS Society when you contribute to your annual workplace campaign.

23


Tell me about your road to diagnosis.

Initially, I thought I was just getting old. Then I changed the mattress and the pain seemed to go away. It came back a few years later and I thought it was my cholesterol medicine. The next time it came back, we started thinking I had Lyme disease. When I found out it was MS, I’d heard the words MS before, but didn’t know what it was.

What was it like to finally have an answer to these symptoms?

It was such a relief. I had really gotten to the point where I was starting to think it was all in my head. Sure, I have the aches and pains in my hips and my knees. At least now I know I don’t need a hip operation or a knee operation. At least it’s all pointing in one direction. It’s nice to know something was really going on.

Why is your act called “Remission Express”?

I expressly hope to get into remission. There’s always hope.

Does MS affect your guitar playing?

I used to have hand seizures. Since I’ve been on Copaxone, my hand issues have gone away. I’m feeling more comfortable with the guitar than I have in long time. Still, the fatigue is like the plug’s been pulled out of the wall.

You were just diagnosed a year ago – why did you decide to hold a fundraising show?

I’m a person that tries to glean the good things out of the bad things. Doors open when doors close. At this point with the MS, while I’m in good enough shape to do it, I wanted to do it. I wanted to bring a little more awareness to MS and get the news out there that you can function with it, so that others don’t look at someone with MS as someone who is not able to proceed with their life. I’m trying to pass on the good vibes.

Face of MS: Preston HarrisonPreston Harrison celebrated his 60th birthday this year with a concert/fundraiser called “Remission Express” that raised more than $5,200. Harrison, who’s been playing and writing music since he was 12 years old, was diagnosed with MS in 2008 but thinks he’s had the disease for at least 20 years.

FACE

OF

MS

Preston Harrison


“WE WILL STAND”

Words and music by Preston Harrison, ©1998

We are young and we are old and we all have been around and sometimes the things life hands us can best be done without but with our faces toward tomorrow and our backs strong from the past we will all stand together and be the ones to last

(Refrain)

We will stand , yes we will stand with our faces toward tomorrow and our backs strong from the past we will stand and we will be the ones to last

We’ve been tried and we’ve been tested and we’ve won the rugged race and there’s not a one among us that cannot hold their place we are like a fire burning it’s a flame that’s deep within there’s a strength that’s deep inside us and we pass it on again

(Refrain)

It’s a strength from those before us and we hold it in our hands with the dreams inside our hearts we will pass it on again we are like a river flowing and it flows from year to year and it flows so those behind us may stand without fear

(Refrain)

We are like a river flowing with our backs strong from the past we will stand and we will be the ones to last

What kind of response did you get?

For one night’s show at a very tiny place, we made $5,226. The place overflowed. We did really well. I placed myself nicely and made it until 2 in the morning, so that was nice. I made it and I’m alive to talk about it.

What’s your message to others out there living with MS?

You must proceed. You’ve got to keep moving. You can’t let MS become your identity. You have to be the master of that.

“We will stand”

Preston Harrison wrote “We will stand” years before he was diagnosed with MS, not knowing where the inspiration lay. Many listeners connected to it after September 11, but Harrison says it also works well in his performances since being diagnosed with MS in 2008.

Hear and download this song at pae.podbean.com.

FA

CE OF M

S

Harrison performing at birthday party


Mountains for Maddi

Barbara Dickson’s first novel tackles love, loss and hope from the perspective of a heroine living with MS. “Mountains for Maddi” is a sweet romance that makes its readers root, not only for Maddi

in her courageous struggle with MS, but for all people who deal with disability and all researchers striving to find a cure for MS. Mountains for Maddi will inspire, encourage and give hope.

Dickson, a Toronto author living with MS, is donating half of her profits to the MS Society of Canada’s “endMS” campaign, which funds MS research. Learn more and purchase the book at www.barbaradickson.ca.

MS T-Shirts

Todd Walbridge, a Rochester, N.Y., man living with MS, has created an online T-shirt store featuring designs by artists living with MS. Sometimes funny, sometimes poignant, the images reflect the fight against MS from the perspective of someone living it. One of the artists, Carole Murry, lives in the Greater Delaware Valley.

The images also are available on mugs, and the store is creating gift baskets for the holiday season. Walbridge will donate $4 from the sale of each item purchased within our region to the chapter. The artists also receive $4 from each sale. Visit MStshirts.com to see the designs, learn more about the artists and place your order.

Artists interested in submitting their work can e-mail [email protected].

SHO

PPIN

G

Artists with MS showcase talentsBooks, shirts, mugs make great holiday gifts

Never forget another appointment or medication dose. The Invisible Clock-II personal timer allows you to set up to 12 different alarms to discretely vibrate or beep during the day. Great as a memory aid, the alarms can be set to repeat daily or for individual tasks.

Available for $39.95 at invisibleclock.com.

GADGET CORNER: Invisible Clock-II


PRIDE JAZZY SELECT POWERED ELECTRIC WHEELCHAIR: Like-new condition, only used indoors for three months. Dark red body, gray leather seats. Dual in-line motors make it very easy to use. Right-handed joystick control, various angled leg supports. Asking $1,800. Please call Jack at 215-256-4176.

JAZZY SELECT POWER SCOOTER: Red body with gray seat, 2 years old, new batteries, perfect condition. Right-handed joystick. Asking $1,500 or best offer. Call Kathy at 610-461-8498.

ONE-STORY HOME: Single rancher in Academy Gardens, northeast Philadelphia, 19114 with 3 bedrooms, 1 bath, living room, dining room, kitchen. Central A/C, new heat, fairly new roof. Front yard and large fenced backyard. In settled, quiet neighborhood close to shopping, with access to I-95. Please call 215-464-3611 after 4 p.m., M-F, or e-mail [email protected].

WANTED: Wheelchair-accessible van, equipped with lowered floor, power accessories and ramp for transporting spouse with MS. Preferred mileage under 50k, priced at fair market value. Please call Stan at 516-221-5117.

TWO MOTORIZED WHEELCHAIRS, 13-STEP STAIR GLIDE, TWO SHOWER CHAIRS, ONE COMMODE, THREE WALKERS AND TWO CANES: Very good condition. FREE. Contact Joseph at 215-737-3537 (day) or 215-288-9163 (evening). Please leave your complete phone number, including area code.

LIBERTY STAIR LIFT: 14-step stair lift, designed for right-hand side of stairs. Fully functional; fold-up seat and arm. FREE. Contact Ben at 856-470-7977.

COMMODE: Used only once or twice, sterilized. FREE. Call Pamela at 215-563-0420.

MEDICAL SUPPLIES: Foley supplies, assorted wound care supplies and blue underpads. FREE. Contact Denise to learn more at 856-627-6401.

FLUIDIZED BED MATTRESS AND FRAME: Special 83” x 39” fluidized (bariatric) bed mattress. Two years old, excellent for minimizing bed sores. Also has Invacare bed, older but fully functional. Has separate controls for raising head, leg and whole bed and variable comfort control from soft to firm. Asking $850 or best offer; original price was $4,700 (Must sell; am moving). Call Phil at 856-430-0258 or e-mail [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, also tilts laterally (i.e. 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.” Original price $22,000. Asking $2,550 OBO (must sell; am moving) Call Phil at 856-430-0258 or e-mail [email protected].

Classifieds

CLA

SSIFIEDS


Help us save money.

Contact [email protected] to receive

this newsletter by e-mail only.

Include your full name and address with

“e-mail only” in the subject line.

SUNDAY

04.25.10Gilbert, Pa.

Media, Pa.

Norristown, Pa.

Sellersville, Pa.

West Chester, Pa.

Medford, N.J.

Moorestown, N.J.

Washington Township., N.J.

SUNDAY

05.02.10Lansdale, Pa.

Lehigh Valley, Pa.

Philadelphia, Pa.

Reading, Pa.

Newtown, Pa.

Valley Forge, Pa.

Ocean City, N.J.

Vineland, N.J.

Voorhees/ Gibbsboro, N.J.

Walk MS is a great springtime event for families and friends. Now is the time to get involved. Help plan the event, start gathering teammates and register to participate or volunteer at walk4MS.org.

For more information, call 1-800-883-WALK or e-mail us at [email protected].

Walk MS 2010 – be there!

2010

Documents

MSConnection Issue 4 2009