SPRING 2014 GREATER ILLINOIS CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE

5SOUTH SUBURBAN SUPPORT GROUP

7MS ACTIVISTS MAKE THEIR MARK IN SPRINGFIELD, WASHINGTON, D.C.

10THE PROMISE OF MYELIN REPAIR

13EXCERCISE: OUR DAILY ALLOWANCE

GOING the DISTANCE to END MSJOLIET RESIDENT KELLI McDONALD TO RUN IN RELAY ACROSS U.S. Story on page 2

2 MS CONNECTION: SPRING 2014

NATIONAL MULTIPLE SCLEROSIS SOCIETYGreater Illinois Chapter 525 West Monroe St. • Suite 900 Chicago, IL 60661 1-800-344-4867

Chairman: Sean Gallagher Chapter President: John Blazek Editor: Jeremy Barewin Design: Chris Collins

© 2014 National Multiple Sclerosis Society, Greater Illinois Chapter

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.

The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

FEATURE STORY

GOING THE DISTANCE TO END MS JOLIET RESIDENT KELLI McDONALD TO RUN IN RELAY ACROSS U.S. BY TAREK WILEY

LIVING WITH MS for over 24 years has taken its toll on Peggy Kubic’s memory, so it had completely slipped her mind that her daughter, Kelli McDonald, would be participating in the second ever MS Run the U.S., a 3,000 mile relay run across the United States to raise money for research and support of those affected by MS. When reminded about the event, Kubic was surprised to learn that her daughter would be running 142 miles from Davenport, Iowa, to Joliet, Ill., where McDonald lives with her husband and three children.

“You’re amazing,” said Kubic, once the information had finally sunk in. “You’re crazy and amazing.”

Crazy as the relay may have seemed to her mother, physically demanding events are just another day at the office for McDonald. She is an avid triathlete, and in 2012 she dedicated her season to helping bring an end to MS. She raised money throughout the year and participated in several races — including her first Half Ironman (70.3 miles) — dressed in orange from head to toe in honor of her mother and her struggle with MS.

“I have seen MS take so much away from her,” said McDonald. “It took her ability to teach preschool, her ability to run, dance and walk long distances. It has almost crippled her with scoliosis and given her pain and numbness 24/7. However, MS has not taken her will to fight.”

3NATIONALMSSOCIETY.ORG | 1-800-344-4867

“I decided to focus on my run and get my times down,” said McDonald. “I knew I could make major improvements for my triathlons, and the thought about the relay was still in my head.”

EARNING EVERY MILENow her training is all about the run as she prepares for the relay. Kumlien has provided her with a six-month training program that breaks down mileage building and maintaining marathon distance leading up to the event. McDonald is also doing strength training, working out six days a week.

FROM STRUGGLE TO INSPIRATIONKubic was diagnosed with MS in 1989. She had been attending McDonald’s eighth grade graduation when she passed out in the bleachers and had to spend the night in the emergency room. The following years were tough on the family, with Kubic relapsing and remitting in such rapid succession that she could barely recover from one cycle before starting another.

“We’ve had a lot of ups and downs over the years, but my mom’s pretty amazing,” said McDonald. “She has a spirit that is unwavering, and I think that’s what has gotten her through the many years of challenges that MS has brought to her.”

After a successful triathlon season in 2012, the Greater Illinois Chapter invited McDonald to a Finish MS (formerly the Race to Stop MS) dinner to acknowledge her fundraising efforts for the year. The evening’s keynote speaker was the founder of MS Run the U.S., Inc., Ashley Kumlien, who ran the inaugural course from California to New York by herself, becoming the 16th female to run across America. Kumlien’s inspiration for the run was her mother — who is also living with MS — and when she told her story, McDonald was captivated by how similar it was to her own.

After talking with Kumlien later that night, the idea of participating in the relay was firmly implanted in McDonald’s head, but she still had one reservation. She was confident in her skills as a triathlete — particularly the swim and bike portions — but she did not consider herself a very strong runner. Continued on page 4

“I don’t ever do anything that’s MS related without crossing the finish line with her [my mom].”

Kelli McDonald

4 MS CONNECTION: SPRING 2014

“I’m not really worried about the run,” said a confident Mc D o n a l d . “I’m sure it will be a life c h a n g i n g experience for me because I

have not run a marathon yet. I figure if I can do a 70.3 mile Half Ironman with swimming, biking and running, 26.2 miles [each day] shouldn’t be too hard. By the time July rolls around, I should be ok. The fundraising part is more terrifying to me.”

To participate in the MS Run the U.S. relay, all runners are expected to raise at least $10,000 by the end of September, including $4,000 by the end of April to secure a spot in the relay. McDonald has already surpassed the $4,000 mark and looks poised to reach or even surpass $10,000 by September. Her donations have come from family, friends and complete strangers who have been inspired by her mother.

“She used to run one of the support groups, so she has known and touched a lot of people,” said McDonald. “It’s neat to see that support coming back through the relay and my fundraising.”

A FITTING FINISHNobody has been more inspired by Kubic than McDonald, who credits her mother for her own stubbornness and refusal to give up.

“I just think to myself that my pain will be fine —

it will go away,” said McDonald. “But my mom and so many others have to deal with their MS symptoms every day, and those symptoms will probably never go away completely. I just have to think about what she’s been through, who she is and that she gets up knowing what she has to deal with every day, and I can’t complain. I just have to keep going. I run because others can’t.”

The MS Run the US relay kicks off April 13 in Los Angeles and finishes in New York on August 17. McDonald’s leg begins July 7 in Davenport, Iowa, and she will be running back to Joliet, Ill., on July 12, where she will be welcomed home by friends and family, some of who will be running the last five kilometers with her. Regardless of who shows up for her final steps of the relay, McDonald knows that she can count on one person to be there — her mother.

“I don’t ever do anything that’s MS related without crossing the finish line with her,” said McDonald. “It’s just fitting.”

Learn more about the MS Run the US relay at msruntheus.com, or visit McDonald’s fundraising page at firstgiving.com/fundraiser/KelliMcDonald/msruntheus2014relay. n

McDonald and her Mom, Peggy

Interested in racing on behalf of the National MS Society, including for this year’s Chicago Marathon? Register for Finish MS at finishMSillinois.org to dedicate your endurance event to creating a world free of MS.

5NATIONALMSSOCIETY.ORG | 1-800-344-4867

PROGRAMS

SOUTH SUBURBAN SUPPORT GROUP CELEBRATES 30TH ANNIVERSARY BY BRENDAN WALDOCH

When Yolanda Treiguts joined the South Suburban Support Group, it was in a state of collapse. Only two members remained, and their monthly meetings were held at a run-down nursing home. At the time, the group was one of only six in northern Illinois, and many people were without a safe, welcoming environment in which to discuss their life with MS.

Thirty years later, the situation couldn’t be any more different.

As a dedicated volunteer for the LaGrange Support Group, Treiguts was asked by the National MS Society, Northern Illinois Chapter to take over as facilitator of the South Suburban Group. She hesitated at first, unsure if she could commit enough time to the cause, but decided to try her hand. It didn’t take long to set the group on the path to success.

“Right away, we found a nicer, cleaner meeting place,” said Treiguts. “We changed our agenda and our whole outlook from, ‘what we can’t do,’ to, ‘what we can do.’ At our first meeting, we had 12 people come out. Now, more than 300 people are on our membership list.”

For the now-retitled South Cook Self-Help

Group, the transformation has been astounding. Attendance at group meetings ranges from two dozen to 200, and people are excited to come back for more. It can be difficult to keep someone’s attention for one hour, let alone 30 years of monthly get-togethers, but South Cook has figured out ways to keep its members engaged and interested.

“We always make sure that our speakers and topics are relevant to the needs of the group,” explained Treiguts. “We want to be inclusive to all members, and to anyone interested in joining. Our members guide the group — no person, no question, no topic is ever frowned upon.”

Cyndi Zagieboylo, current President/CEO of the National Multiple Sclerosis Society who has been with the Society for 29 years, has charted the progress of the South Suburban Support Group over the years and seen first-hand the growth and camaraderie that the group has fostered.

The South Cook MS Self-Help Group team from Walk MS 2013

Continued on page 6

MS CONNECTION: SPRING 20146“Yolanda is an amazing connecter; she loves people and we are drawn to her,” said Zagieboylo. “I have been so fortunate to know Yolanda for the past decade — she is a great partner, mentor and friend. She inspires us all to live our very best lives.”

As a whole, the group recognizes the need for social and recreational programming beyond their normal meetings, which keeps everyone active and engaged.

“We’ve always tried to be innovative, and we love to get our members involved in other activities,” said Treiguts. “We started the first significant others’ support group, we had the first advocacy group and we helped to plan the south suburban Bike N’ Hike and Walk MS when they first started. We were the first support group to branch out into a Walk team, and we’ve raised over $1 million to date.”

Over the course of time, the South Cook Self-Help Group has never lost sight of its goals.

“After 30 years, the group has not changed its

dedication to a positive approach or its commitment to excellence,” said Treiguts. “We will not stop, or even rest, until we find a cure for the disease, until not another person has to hear, ‘You have MS.’ We will continue meeting, talking and fundraising until MS is only a distant memory.”

Treiguts’ passion for the cause is as vibrant as it is deeply rooted. After years of forging friendships, sharing knowledge and raising awareness, facilitating the South Cook group has become more than just a duty.

“This group is my family,” she said. “They’ve done more for me than I can put into words. I rarely dwell on my own MS because I’ve met so many people with the disease who give so much of themselves, who live with such dignity and grace, and they inspire me to try to do the same.”

For information about MS support groups in your area, visit MSillinois.org or call the IRC at 1.800.344.6847.

HELP BRING US CLOSER TO A WORLD FREE OF MS IN 2014!

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Tour de FarmsRide 2014

BRING IT. RUN IT. MUCK IT.

August 23, 2014 | Lockport, ILREGISTER AT: muckfest.org

7NATIONALMSSOCIETY.ORG | 1-800-344-4867

ADVOCACY

MS ACTIVISTS MAKE THEIR MARK IN SPRINGFIELD, WASHINGTON, D.C.Every March, MS Activists from the Gateway and Greater Illinois Chapters congregate in Springfield for MS Action Day — an opportunity for constituents to meet with their policymakers to discuss the issues and legislation that are most important to people living with MS. On the evening prior to the day at the Capitol, MS Activists gathered at a reception to network with other activists and policymakers and prepare for the next day’s events.

This year’s reception kicked off MS Action Day (March 26) with over 35 staff and volunteers in attendance. Senate President John J. Cullerton, Illinois State Treasurer Dan Rutherford and Rep. Ann Williams all made appearances to greet the activists. Senate President Cullerton accepted the 2014 MS Leadership Award for his work on last year’s MS Task Force legislation.

The following day, MS Activists advocated for two different issues: lowering the costs of home- and community-based services and the creation of a standardized form for prescription prior authorization (SB2585/HB3638). MS Activists who could not attend MS Action Day could still advocate for the issues through Virtual MS Action Day by sending letters to their legislators online.

Earlier in the month, an MS delegation of activists and staff from Illinois attended the National MS Society’s Public Policy Conference in Washington, D.C., where they lobbied for federal issues, including increased funding from the National Institutes of Health (NIH), Congressionally Directed Medical Research Program (CDMRP) and the Food and Drug Administration (FDA), and sponsorship of a bill that would ensure access to complex rehabilitation technology, including customized scooters and other assistive devices.

The delegation met with staff members from all 20 Illinois Congressional and Senate offices, including a visit with Senate Majority Whip Dick Durbin, who just one day earlier called for $150 billion more in federal spending on biomedical research over the next 10 years.

If you are interested in receiving updates on current advocacy issues, sign up for the MS Activist Network at nationalMSsociety.org/Chapters/ILD/Advocate-for-change or send an email to advocacyillinois@nmss.org.

Greater Illinois Chapter staff and volunteer advocates during MS Action Days in Springfield, Ill.

MS CONNECTION: SPRING 20148

RESEARCH

MS RISKSAND TRIGGERSBY NICHOLAS LAROCCA, PHD

If we knew exactly what causes multiple sclerosis, we might be able to prevent anyone from ever getting the disease again. But even more relevant to people who already live with MS is new evidence for risk factors that may make their disease worse – or better.

A lot of progress in this area was reported last October at ECTRIMS, the world’s largest gathering of MS researchers, on MS risk factors and triggers. For example, in a large population study by Dr. A.K. Hedström and team from Stockholm, Sweden, it was confirmed that cigarette smoking increased the risk for developing MS at any age, and climbed with the amount smoked. The researchers also found that quitting smoking brought that risk back to normal within a decade.

The same team reported that smoking could increase a person’s risk of developing the kind of antibodies in their blood – called neutralizing antibodies – that can block the ability of interferon beta to reduce MS disease activity. Another excellent reason to quit.

WHAT’S IN THE GENESWe know genes contribute to MS risk, but that’s not the end of the story. Dr. H. Westerlind reported on a study by a team from Solna, Sweden, that took advantage of MS patient registries in Sweden, one of which dates back to the 1800s. They took a fresh look at how much having a family member with MS, particularly an identical or fraternal twin, increases chances of getting the disease. The researchers found that the risk of an identical getting MS if the other twin has the disease was lower than in prior reports, but still much higher than in fraternal twins. This study suggests that that the role of genes may be more complicated than previously suspected. (To read more about genetic risks, go to nationalMSsociety.org/genetics.)

The mystery of genetics and MS is driving more studies that look at how genes interact

NATIONALMSSOCIETY.ORG | 1-800-344-4867 9with a person’s environment and lifestyle.Danish researchers Dr. A.B. Oturai and colleagues from Copenhagen looked at a group of potential risk factors, including known MS susceptibility genes, obesity in early adulthood, previous mononucleosis and high teenage alcohol consumption. They found that each of these factors contributed to lowering the age at which an individual was diagnosed with MS. A related study suggested that preventing teen obesity in people with MS susceptibility genes may reduce their risk of developing MS. WATCH THE SALTRecent studies have pointed to salt intake as a possible risk factor for developing MS or for making mice with an MS-like disease worse. (Read more at nationalMSsociety.org/salt.) But new evidence presented this week by Dr. M.F. Farez and colleagues in Buenos Aires and Boston suggest that high salt intake may also increase MS exacerbation rates and MRI-detected disease activity in people who have the disease. It will be important to do further research in this area to confirm these results in larger numbers of people and to figure out what levels of salt in the diet might be considered OK for people with MS.

WHAT YOU EATClinical trials are also getting underway to test whether increasing an individual’s vitamin D levels can delay the development of MS. The National MS Society is supporting a trial to see whether vitamin D supplements can

reduce MS activity in people already diagnosed. Visit nationalMSsociety.org/vitaminD to learn more.

Another emerging area of research is the gut microbiome – colonies of trillions of bacteria that inhabit our intestinal tracts, most of which are beneficial. The immune activity that occurs in the gut, and which is related to the immune system, may help dictate other aspects of health, including the activity of an individual’s MS. A lecture by Dr. O. Borbye Pedersen of Copenhagen made it clear to me that this is a very promising field of study. If we could decipher the influence of the gut microbiome, we have the potential of altering it to treat or even prevent MS.

Taken together, maybe there’s some truth to the old adage, “You are what you eat.”

Follow MS research by signing up for MS eNews at nationalMSsociety.org/signup. n

Dr. Nicholas LaRocca is a clinical psychologist who has worked in the field of MS for over 30 years and is the Society’s vice president of Health Care Delivery and Policy Research

Originally published at MSconnection.org/blog.

EVERY STEP MATTERS.EVERY DOLLAR COUNTS.WALK TO CREATE A WORLD FREE OF MS.

REGISTER AT: walkMSillinois.org | 1.800.344.4867

BLOOMINGTON

CHICAGO LAKEFRONT

MCHENRY COUNTY - LAKE IN THE HILLS

NORTH SHORE - GLENVIEW

NORTHWEST SUBURBS - PALATINE

ROCKFORD

ST. CHARLES

SOUTH SUBURBS - ORLAND PARK

SOUTHWEST SUBURBS - LOCKPORT

SPRINGFIELD

WEST SUBURBS - NAPERVILLE

MAY 4, 2014PEORIA

URBANA

SEPT. 7, 2014

ORLOOK FOR US ON: @walkMSillinois

Chicago Lakefront, 2013

EVERY STEP MATTERS. EVERY DOLLAR COUNTS.

“Through Walk MS, we’ve seen how my dad’s diagnosis has made us stronger.”

Nick Cucci, Team Forza

Father, Pat, diagnosed in 2010

“I walk for those who face challenges in their lives because of an MS diagnosis.”

Heather Daigle Xu, Team KPMG Stompers

Diagnosed in 2002

“Walk MS gave me support and a sense of community during the most uncertain time in my life.”

Angel Arroyo Jr., Team MS Mission Possible

Diagnosed in 2010

“I see first-hand the impact of MS; I walk to do my part to end it.”

Bethany Masch, Team Northwestern Memorial

Nurse Clinician, Comprehensive MS Program Northwestern Memorial Hospital

WALK TO CREATE A WORLD

FREE OF MS

MAY 4, 2014 11 LOCATIONS STATEWIDE! REGISTER TODAY: WALKMSILLINOIS.ORG

START FUNDRAISING TODAY AT: WALKMSILLINOIS.ORG

It’s easier than ever to raise money with our online fundraising tools! Start by setting up your personal page by logging in at walkMSillinois.org.

USE YOUR PERSONAL PAGE TO:❑ SHARE YOUR STORY • Tell the world why YOU walk, upload photos and videos, and display your progress toward your

fundraising goals.

❑ IMPORT YOUR CONTACT LIST • Update your address book with your contacts to make contacting friends and family even easier.

❑ SEND PERSONALIZED EMAILS • Use your Participant Center to recruit team members and ask for donations.

❑ SEND THANK YOUS • Tell your family, friends and other supporters “thank you for donating” by sending

personalized messages.

❑ FUNDRAISE WITH FACEBOOK • Install the Boundless Fundraising app for Facebook by clicking on the link on your participant

center home page.

❑ FUNDRAISE ON THE GO • Download the mobile participant center for your smart phone to manage and share your Walk MS

Experience. To download, search for “Walk MS” in the iTunes App Store or Google Play.

MAKE SURE TO KEEP FUNDRAISING:❑ PRINT OUT YOUR FUNDRAISING AIDS • Check out the Walk MS fundraising page for printable tools to add a visual edge to your campaign.

On this page you can also find answers to Frequently Asked Questions about fundraising, the Walk and more.

❑ SET A FUNDRAISING GOAL – AIM HIGH! • Walk MS is one of our most important fundraising events. Challenge yourself by setting a high goal,

and get a head start today by making a self-pledge.

❑ ENTER YOUR “OFFLINE GIFTS” • Been collecting cash and check donations? Be sure to enter them into your Participant Center using

the “Enter Offline Gifts” feature, and mail checks to the chapter.

❑ CHECK FOR MATCHING DONATIONS • Check if your employer, or the employer of your donors, will match any donations made to your team.

❑ BRING YOUR LAST-MINUTE DONATIONS • Some donations might come in too late to enter them online. Put any last-minute cash and checks in

your check-in envelope and bring it with you to your Walk MS site.

FUNDRAISING CHECKLIST

MS CONNECTION: SPRING 201410

RESEARCH

THE PROMISE OF MYELIN REPAIRBY BRUCE BEBO, PHD

When I started as a laboratory immunologist more than 20 years ago, the major focus in MS research was searching for ways to turn off destructive immune attacks, which resulted in immune-based therapies that can help control relapsing forms of the disease for many people.

While researchers continue to look for ways to improve the treatment of relapsing MS, the focus in MS research is shifting to finding strategies that stop MS progression and repair the damage that causes disability. This is relevant to people with all types of MS, but especially to people with progressive forms of the disease.

DREAM TO REALITYPeople are excited by the possibility, once only a dream, that we will find a way to repair damaged myelin. This would be important for restoring function, and many believe that re-establishing the protective myelin coating on axons may even shield them from further harm. Bruce Trapp, PhD, and his team at Cleveland Clinic have been working hard to advance the field of nervous system repair. They have

shown that new MS lesions undergo natural repair much better than older (“chronic”) ones. They also reported that the problem is not a lack of cells capable of making new myelin in old lesions, but their inability to produce new myelin. Work is now underway to figure out what the impediment is and how to jump-start the repair process. What makes this work on MS lesions intriguing is that it straddles two different parts of the brain – the so-called white matter and gray matter. The team found that chronic lesions in the white matter don’t remyelinate. But chronic lesions in the gray matter show robust remyelination – even in people living with MS into their 70s. This opens up opportunities to compare differences in the two regions and figure out how to make white matter repair itself like gray matter.

In related research, Larry Sherman, PhD, and colleagues at the Oregon Health & Science University found that fragments of a molecule

NATIONALMSSOCIETY.ORG | 1-800-344-4867 11called hyaluronic acid (HA for short) accumulate in chronic white matter lesions and could be at least partially responsible for the stalled remyelination. They have identified an enzyme that chews the HA into fragments and have shown that inhibitors of this enzyme promote remyelination. They are now trying to figure out exactly how this works, in hopes of developing treatments that promote remyelination.

MORE POSSIBILITIESIncreasing evidence suggests that female sex hormones might be neuroprotective and/or promote repair of myelin. I saw two very interesting presentations last October at ECTRIMS, the world’s largest gathering of researchers, which reported that different estrogen-like molecules could stimulate production of new myelin. Both of these projects are supported by the Society. Another strategy to repair myelin in MS is to introduce new repair cells into the system via transplantation. Of note was a presentation by investigators from Milan, Italy, who used mouse skin stem cells and forced them to become myelin-making cells. After these cells were infused into the spinal cord, they promoted recovery in mice with the MS-like disease EAE. The team found that these cells didn’t actually make myelin themselves, and are starting to identify the growth factors they release that stimulate natural repair and also reduce inflammation. More work is needed, but

this type of research gives hope that this strategy may eventually help restore lost function.

Updates on two repair therapies already being tested in human clinical trials were also presented. The first is called anti-LINGO. LINGO is seen in neurons and myelin-producing oligodendrocytes, and blockading this protein with anti-LINGO has been shown to promote remyelination in animal models. An investigative team from Biogen Idec reported that anti-LINGO was well tolerated in people and that no negative effects were seen. This means the company will likely keep pursuing clinical development of this promising repair candidate. In other news, investigators from the Mayo Clinic are developing an agent called rHIgM22 that has been shown to promote extensive remyelination in several different animal models of MS. This agent is now in early clinical trial testing in MS. We’re not there yet, but recent and ongoing research holds the promise of uncovering new targets for stopping progression and stimulating repair. n

Bruce Bebo, PhD, is the associate vice president of Discovery Research at the National MS Society.

Originally published at MSconnection.org/blog.

MS CONNECTION: SPRING 201412

MONEY MATTERS

WHERE TO FIND EMPLOYMENT HELPBY STEVEN W. NISSEN, MS, CRC

Are you considering changing jobs? Have you been out of the workforce, but are thinking about returning? Do you have questions about disclosure in the workplace or how to accommodate symptoms on the job?

CALL AN MS NAVIGATORAn MS Navigator can address many of your employment-related questions and refer you to helpful resources, including employment-related publications and videos. Call the Society at 1-800-344-4867 and visit nationalMSsociety.org/employment.

JAN CAN HELPThe Job Accommodation Network (JAN) is a free service of the U.S. Department of Labor Office of Disability Employment Policy that can provide technical assistance and support regarding accommodations, the Americans with Disabilities Act, disclosure and self-employment for people with disabilities. Contact JAN at 1-800-526-7234 or visit askJAN.org for a wide variety of resources and publications.

IN YOUR STATEEach state has a vocational rehabilitation agency whose goal is to assist individuals with disabilities to gain and maintain employment. For a full listing of vocational rehabilitation agencies, visit askjan.org/cgi-win/TypeQuery.exe?902.

ONE-STOP SERVICESThe purpose of local one-stop employment centers is to assist job seekers, with or without disabilities, in finding employment. However, if you choose to self-identify that you are living with MS, the office may be able to provide some additional support services. To find your closest center, visit servicelocator.org.

TARGETED RECRUITMENTSeveral online resources feature employers who are actively recruiting qualified people with disabilities, including:

• Equal Opportunity Publications Career Center - eop.com/career.php.

• GettingHired - gettinghired.com.

• National Business & Disability Council - viscardicenter.org/services/nbdc.

Working with MS is possible and you don’t have to do it alone. Get connected to stay on top of your employment options. n

Steve W. Nissen, MS, CRC, is the Society’s senior director of Employment & Community Programs.

13NATIONALMSSOCIETY.ORG | 1-800-344-4867

LIVING WITH MS

EXERCISE: OUR DAILY ALLOWANCEBY JULIE STACHOWIAK, PHD

OK, we all know that we should be exercising. Besides all of the great stuff that exercise does for everyone (such as lowered cardiovascular risk and increased muscle mass), research on the effects of exercise in multiple sclerosis has shown that it can improve mood, MS-related fatigue and cognitive function.

Notably, exercise has also been shown to increase overall daily activity level, functional capacity and balance in people with MS, as well. In total, this adds up to a measurable increase in quality of life.

WHY NOT?There is even limited evidence in animal models that exercise therapy may halt, slow or reverse disease progression of MS. Exercise therapy is an individualized exercise or plan typically prescribed by a doctor and done under the supervision of a physical therapist or other healthcare provider. There are specific guidelines, based on scientific data, for programs combining resistance and endurance testing. While that is great and all, raise your hand if you are currently participating in an exercise therapy program. See what I mean?

Studies show that fewer than 20% of people in the general U.S. population get the recommended

EXERCISE HAS BEEN SHOWN TO INCREASE OVERALL DAILY ACTIVITY LEVEL, FUNCTIONAL CAPACITY AND BALANCE IN PEOPLE WITH MS.

150 minutes of moderate-intensity exercise per week. In people with MS, this number is definitely lower, as research shows that activity in people with MS starts off low and declines over time.

So, why don’t we exercise? As a person with MS, that is a pretty simple question to answer: Even though I know it will make me feel better, many times I feel so horrible or so fatigued that the thought of 30 minutes of sustained exercise just makes me laugh. Or cry. A WAY INTO EXERCISEHowever, there may be an answer, according to Robert W. Motl, PhD, in his presentation at ECTRIMS 2013, titled “Physical activity

14 MS CONNECTION: SPRING 2014

in MS: Theory, determinants and behavioral interventions.”

Dr. Motl reminded the audience that it is not just people with MS who don’t stick to exercise programs. According to studies, over 50% of adults drop out of any formal exercise program after 3 months. And after 6 months, 75% have stopped exercising.

He has some ideas on how to prevent this exercise attrition, however. Rather than pushing for a formal exercise therapy program, we should strive to incorporate more physical activity into our daily lives. Dr. Motl calls this “lifestyle activity,” and points out that intermittent exercise has been shown to have the same effect as “continuous bouts” of exercise. In other words, accumulating 30 minutes a day of moderate exertion doing things like walking, gardening or pushing a vacuum cleaner can be as effective as a more formal 30-minute exercise session.

In addition to this new approach to getting our recommended daily allowance of exercise, Dr. Motl has been researching the effect of social cognitive theory, which relies on perceived self-efficacy. Simply put, a person will be much more likely to do something if they believe that they CAN do it. Putting this theory to the test, Dr. Motl’s research group tried it out on people with MS. After three months, the people who participated in the self-efficacy component exercised more, exerted themselves more and reported feeling better than those in the group who did not receive the self-efficacy message.

MODELING HEALTHI’m a huge fan of this new paradigm of incorporating exercise into daily life. After seeing the title of an article, “Is Sitting the New Smoking?” in a popular magazine, I bought a pedometer and now force myself to get at least 10,000 steps a day. Since a part of self-efficacy involves “modeling” or seeing others do the same thing, I monitor an online group of people who log their steps daily. In this way, I have made exercise a habit. I can tell you, I feel much better than I did when I would visit the gym for 3 days straight and then take a 6-month break. For those of you who may have limited mobility, you can still get the many benefits of exercise by exerting yourself to the extent possible to do your daily activities. Talk to your healthcare provider about what activities may work best for you. For more ideas on how to make exercise a part of your everyday life, visit nationalMSsociety.org/exercise. n

Julie Stachowiak, PhD, is an epidemiologist, author of The Multiple Sclerosis Manifesto, and a person living with MS.

Originally published at MSconnection.org/blog.

15NATIONALMSSOCIETY.ORG | 1-800-344-4867

LIVING WITH MS

CONNECT AT: NATIONALMSSOCIETY.ORGThe National Multiple Sclerosis Society’s website at nationalMSsociety.org connects people like yourself who are living with MS with the information, people and resources that can help you and your loved ones live your best lives. To that end, many exciting changes to the site have taken place to improve your ability to connect to:

INFORMATIONUpdated navigation, new content and improved searching help you find what you’re looking for faster.

EACH OTHEROur growing online community is even easier to access, making it easier for you to share your experience with others living with MS, healthcare providers and MS researchers.

THE MS MOVEMENTSeveral new features make joining the MS movement even more possible. These features include: a “My Profile” section where you can access your profile information, set preferences and track your involvement; a mobile-friendly design that lets you view the site from your smartphone, tablet or other mobile device; and easier-to-read content and accessibility for anyone using assistive devices like screen readers.

YOU TALKED, WE LISTENEDMany of you – people living with MS, friends and family members, event participants, volunteers, donors and professionals – contributed ideas and input toward the new site. You shared what information matters most to you, tested the site as it was developed and made suggestions – you even helped get rid of a few “bugs.” Now, the next generation of nationalMSsociety.org is designed to help you:

n Find relevant information, programs, services, and resources;

n Connect with others, share information and get support;

n Participate in events, advocate for change, raise awareness, champion research, and discover more ways to engage.

Take some time today to tour the new site at nationalMSsociety.org, and let us know what you think. If you happen to find a bug that snuck through the cracks, let us know that too. n

MS FAMILY DAYS AT COUGARS & CHIEFS BASEBALL GAMESCome out to the ballpark and join us to connect with other families impacted by MS and watch local baseball teams in action. Details can be found at MSillinois.org, or call 1.800.344.4867 to register. Tickets are limited.

Kane County Cougars - Friday, May 16Peoria Chiefs - Saturday, May 17

525 West Monroe St. • Suite 900Chicago, IL 60661

Mailing Label ChangesPlease check the appropriate box below, correct the label then return to National MS Society, Greater Illinois Chapter

q Name change or misspelledq Address changeq Remove from mailing listq Received more than one copyq To cuts costs for the Greater IL Chapter, I will

download an electronic .pdf from their website. Please remove me from this mailing list.

n We love our MS Society Volunteers! In fiscal year 2013, over 1,300 volunteers joined the movement. In honor of National Volunteer Week (April 6–12), the National MS Society would like to recognize all of our wonderful volunteers and thank them through a special online message on the MSillinois.org home page. Thank you for your dedication to the mission.

n Looking for a way for your business or company group to participate in team building activities? Are you part of a high school or grade school that needs to fulfill community service hours? Please contact us at volunteerillinois@nmss.org or 312.423.1139 for more details.

n MS Ambassadors represent the National MS Society at community fundraising events and resource fairs throughout greater Illinois to share their MS story and educate the community about multiple sclerosis. If you would like to volunteer, please contact us at volunteerillinois@nmss.org or 312.423.1139 for more details.

SAVE the DATEWALK MS - 11 LOCATIONS STATEWIDE - MAY 4, 2014

BIKE MS: TOUR DE FARMS DEKALB, IL. - JUNE 21-22, 2014

COHN WEIL MEMORIAL MS OUTING HIGHLAND PARK, IL. - JULY 7, 2014

MS2 SLUGFEST CHICAGO - AUGUST 9, 2014

MUCKFEST MS LOCKPORT, IL. - AUGUST 23, 2014

Go to our website for updates on these and other upcoming events at MSillinois.org

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