ms connection newsletter · year i lace up. ” not ready to lace ... well taken care of....

WINTER 2016/2017 GREATER ILLINOIS CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE

05EXPLORING COGNITION AND MS

08MS AWARENESS WEEK

11CHASED BY A ZOMBIE — DIY FUNDRAISING

14IS IT HARDER TO WORK WITH MS?

SWISH SWISH UNITED CENTER HOSTS MS HALF COURT CLASSIC (PAGE 2)

2 MS CONNECTION: WINTER 2016/2017

NATIONAL MULTIPLE SCLEROSIS SOCIETYGreater Illinois Office 525 W. Monroe St. • Suite 1510 Chicago, IL 60661 1-800-344-4867

Chairman: Bill Gillispie, Jr. President Interim: Maureen Reeder Editor: Christy Kim

© 2017 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.

SLAM DUNK FOR MSANNUAL MS HALF COURT CLASSIC EVENT OFFERS ONE OF A KIND EXPERIENCE FOR PARTICIPANTSBY: CHRISTY KIM

If you think the Chicago Bulls and multiple sclerosis don’t have anything to do with each other, think again.

Every spring, the United Center in Chicago, home of the Bulls, lights up with orange marquees inside its famed arena for MS Half Court Classic. An annual co-ed, four-on-four charity basketball tournament where teams

play to raise money for the National MS Society, MS Half Court gives a one of a kind opportunity for people of all athletic ability to come together to shoot some hoops for a world free of MS. This year’s event will take place on Saturday, March 18.

Teams of five can include friends, family or co-workers. For Eric Widstrand, it’s an event his team, comprised of him and his colleagues, look forward to every year.

3NATIONALMSSOCIETY.ORG | 800-344-4867

“THE PLAYERS ARE PASSIONATE IN BOTH PROVIDING HELP TO THE RESEARCH FOR THOSE IN NEED, BUT ALSO THE EXHILARATION OF BEING ON THE UNITED CENTER COURT,” SAYS WIDSTRAND.

Widstrand first got involved with MS Half Court eight years ago when a co-worker needed a last minute team member. Fast forward to today, Widstrand works at The Walsh Group, where the company’s love of basketball runs deep within its culture (“Walsh’s love for basketball is well-known in the company, as the Walsh family had an actual basketball court gymnasium integrated into the construction of their headquarters in Chicago. It was a runner up in Crain’s Chicago Business Coolest Office 2014 for this reason.”).

Walsh employees enjoy lunch-time scrimmages and bonding on the court. Soon enough, Widstrand put two and two together and started to champion for his company to get involved in the event. Since 2013, Widstrand, his team and Walsh have been dedicated players.

“I presented the opportunity to create an ‘all Walsh Team’ to Mr. Dan Walsh and was immediately given the green light with his personal sponsorship of the event for us,” he recalls. “Walsh has since helped raise over $30,000, including being a Presenting Sponsor at the 2016 event.”

While the event raises money for a serious cause, players and spectators are encouraged to have fun. Winning the tournament may give a team bragging rights, but MS Half Court is about bonding with team members and soaking in the surreal experience of the games.

“I remember the first time I walked onto the United Center court six years ago for MS Half Court Classic. Between the music, the Society’s bright orange T-shirts and the positive energy throughout the place, it was quite a memorable experience,” says Brain Ledebuhr, who is the committee lead for the event. “On the other hand, I try to forget the many air-balls I shot that first game.”

Though having moves like a pro isn’t a requirement to participate, the opportunity to play on the famed court of the United Center,

ERIC WIDSTRAND (CENTER) AND HIS TEAM AT MS HALF COURT


where Michael Jordan and Scottie Pippen starred, is not to be missed. In fact, one of the distinct features of MS Half Court is the chance to gain exclusive access to the arena.

“FINDING PLAYERS TO PARTICIPATE IS MUCH EASIER THAN YOU COULD IMAGINE WHEN THE UNITED CENTER GETS MENTIONED,” SHARES WIDSTRAND. “THERE REALLY IS A SURREAL FEELING PLAYING COMPETITIVE GAMES ON THE SAME COURT AS THE CHICAGO BULLS. I AM PERSONALLY AWESTRUCK EVERY YEAR I LACE UP.”

Not ready to lace up your shoes to play some ball? Family and friends are encouraged to stop by, take pictures out on the court and cheer on their favorite teams, or volunteer.

“Seeing all of the family members in the crowd cheering to support their team is also magical,” says Widstrand. “My wife, daughters and sons love the atmosphere almost as much as I do.”

MS Half Court is a jam-packed, action filled day. Playing at the United Center and raising funds for cutting-edge MS research and critical services is a win-win for all involved.

“It’s a great opportunity to reconnect with family and friends in such an exclusive venue, and for a great cause,” shares Ledebuhr,

whose mother lives with MS. “Words can’t describe what a world free of MS would mean to me. It would have such an incredible impact on so many lives that I’m literally speechless at the notion. And, leaving me speechless is hard to do.”

Experience the awe and excitement of MS Half Court Classic at mshalfcourtclassic.org. n


EXPLORING COGNITION AND MSApproximately half of all people with MS will develop problems with cognition. This can range in symptoms from trouble with memory to difficulty processing information. Dr. Barry J. Riskin, MD, of DuPage Medical Group recently answered questions regarding cognition and MS.

What can an individual do to help slow neuropsychological impairment?

Generally speaking, exercise is believed to be one of the most helpful things to help cognitive function. The amount and type of exercise is not specifically known, but doing up to 30 minutes of exercise three times a week is believed to be beneficial. Other things help, including cessation of smoking, avoiding excessive alcohol and making sure your general health is well taken care of. Partnering with your doctor to check for sleep apnea, thyroid imbalance or vitamin deficiencies, and making sure your MS is well treated, can all be helpful.

If neurodegeneration causes cognitive disability, what do brain lesions affect?

In MS, there can be loss of cognitive power due to the effects of demyelination as well as neurodegeneration. White matter disease alone can lead to cognitive impairment by way of “disconnecting” the communication of one part of the brain to another. If the demyelination

is severe enough, there can be a loss of brain cells (neurons). This is in addition to or separate from neurodegeneration, where the loss of neurons occurs without demyelination. MRI scan testing of the brain may show atrophy or loss of brain volume as an indicator of cell loss. Demyelination and neuronal loss in the temporal, parietal and frontal lobes can lead to a loss of cognitive function, e.g. memory, language, concentration. It is the sum total of the effects of MS in multiple places over time that leads to dysfunction.

Is there medication or anything that will help cognitive impairment in MS?

At this time, there aren’t medicines that effectively boost memory and other cognitive function in MS as compared to say Alzheimer’s disease. In fact, medications used to treat cognitive dysfunction in Alzheimer’s disease have been shown at times to make cognitive dysfunction worse in MS, or simply not work. Medications that act to stimulate the brain, the kinds that are used to treat attention deficit disorder, may sometimes help patients with MS focus better. Treatment of depression in persons with MS can sometime improve cognitive dysfunction.

What do lesions in the spinal cord affect?

Lesions of the spinal cord typically produce numbness or sensory pain, weakness and spasticity (or stiffness) in the arms and legs depending on the level of the MS lesion. Certain types of imbalance or clumsiness in the arms and legs can be from spinal cord lesions. Another very common effect of a spinal cord


lesion is loss of the normal control of the bowel and bladder, and can sometimes also lead to sexual dysfunction.

What is the most promising of all the research going on to stop and improve MS disability today?

Stopping MS and improving disability are related, but also distinct goals of therapies. Research into the immune system, how it works and how to modify it may be the most promising of the near term efforts to stopping MS. The research into improving disability is

moving ahead, but at a much slower rate as compared to research in neuroimmunology. In the long term, research into the enteric microbiome (the microorganisms living in our gut), the effects of micronutrients and maybe even the effects of sunlight may one day prove helpful.

You can contact Dr. Riskin at: DuPage Medical Group 1948 Three Farms Road Naperville, IL 60560 dupagemedicalgroup.com

RESOURCES FOR BASELINE NEUROPSYCHOLOGICAL EVALUATIONS Curious to learn more about your own cognition? Here is a helpful list of places where

you can receive a neuropsychological baseline exam to measure cognitive ability.

Robert Hanlon, Ph.D. ABPP Northwestern 645 N. Michigan Ave., Suite 803 Chicago, IL 60611 312-202-0755

Maureen Lacy, Ph.D. University of Chicago 5841 S. Maryland Ave. Chicago, IL 60637 773-834-3930

Eduardo Montoya, Ph.D., MarianJoy Rehabilitation Hospital Fluent in Spanish 26W171 Roosevelt Road Wheaton, IL 60187 630-909-8602

Neil Pliskin, Ph.D. University of Illinois at Chicago 912 S. Wood St. Chicago, IL 60612 312-996-6217

Alona Ramati, Ph.D., ABPP-CN, Clinical Neuropsychologist NorthShore University Healthsystem, Department of Psychiatry 2180 Pfingsten Road Glenview, IL 60026 847-425-6400

Stephan Rothke, Ph.D. Northwestern, RIC 3710 Commercial Ave. Northbrook, IL 60062 847-480-5744


RESEARCH

THE MS MICROBIOMEBY ELISABETH MARI, PHD

At the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) meeting in October, I enjoyed hearing about an area of investigation that is moving forward quickly — specifically, the gut microbiome and its role in the MS immune attack.

Drs. Yan Wang, Lloyd Kasper and colleagues from Dartmouth Medical School and Eastern Washington University reported that treating mice with the gut-related molecule called polysaccharide A (PSA) expanded specific immune cells called Bregs, or regulatory B cells, which in turn promoted an immune response that prevented the mice from getting an MS-like disease. Partly funded by the National MS Society, this exciting work brings us closer to future studies to explore how PSA may help to stop the immune attack in people with MS.

Drs. Egle Cekanaviciute, Sergio Baranzini and other collaborators in the MS Microbiome Consortium analyzed bacteria in stool samples from 64 people with MS who had received treatment, and 68 people without MS. They found that certain bacteria were increased in people with MS, and that those bacteria increased immune T helper 1 (Th1) cells — major players in the MS immune attack. Meanwhile, another type of bacteria — which was reduced in people with MS — induced cells that could turn down the immune attack. This research may open the

door to novel therapeutic approaches based on manipulating these gut bacteria.

The interaction between the gut and the immune attack in MS may begin quite early, says Dr. Helen Tremlett (University of British Columbia) and collaborators from the U.S. Network of Pediatric MS Centers. They examined gut bacteria and immune markers in 15 children with MS and nine children without MS, and found links between types of gut bacteria and specific immune markers in the children with MS. Studying MS in this early stage is important to identify early gut microbiome involvement in the disease.

The microbiome is a relatively new area of research for the MS community — but I’m excited to see how far this field has already come. I’m eager for this progress to be propelled into treatments and solutions that will stop the disease. n

Dr. Elisabeth Mari is director of Biomedical Research at the National MS Society.

THE MICROBIOME IS AN EXCITING NEW AREA OF MS RESEARCH.


MS AWARENESS WEEKThe week of March 6, 2017, is MS Awareness Week! While the Society makes the mission to end MS our top priority each and every day, this special week in March helps bring our mission to the forefront of everyone’s mind. With over 20,000 people affected by MS here in Illinois, let’s all work together to raise awareness to find a cure.

WHY AWARENESS WEEK IS IMPORTANTWe asked some people through social media and in person why it’s important for them that we have an MS Awareness Week. Read their thoughts below!

“MS Awareness Week is important because it brings attention to all the resources that are available for people who have been diagnosed with multiple sclerosis. During this week, the Society highlights the many tools, research and support that are accessible to anyone who has been touched by this elusive disease. I was diagnosed almost 27 years ago and throughout the years I took advantage of all the information I could get from the Society to learn, grow and move forward in my life.” — Sarah Sippy, MS Ambassador

MS AWARENESS IN ILLINOISDuring MS Awareness Week and the entire month of March, we make sure to add a splash of orange throughout the Chicagoland area. See how we promote MS Awareness Week!

BUILDINGS IN CHICAGO, LIKE THE WILLIS TOWER, LIGHT UP IN ORANGE TO RAISE AWARENESS!

DINE TO END MS PARTNERS WITH RESTAURANTS IN CHICAGO TO DONATE PROCEEDS TO THE SOCIETY.

GREATER ILLINOIS STAFF MEMBERS AND CONSTITUENTS GET FEATURED ON ABC7 CHICAGO.


OFFMY WAVE.

Together We Are Stronger

Ocean Beach native and local surf legend Steve Bettis was diagnosed with MS in 2006. Although surfing is still central to his life, he hasn’t been able to get out on the water in 10 years. For a man whose daily routine always included a few waves, more than a decade out of the surf is just too long. This is why the National MS Society teamed up with his buddy Robert “Wingnut” Weaver and used virtual reality to get Steve back on his wave. See their experience and find out how you can share yours at WeAreStrongerThanMS.org.

“MS Awareness Week is a great opportunity to focus on those living with MS and the progress we have made towards a world free of MS. It’s also a great way to educate others about MS and how they can help further our mission to find a cure.” — Maggie Smith, Treasurer of Multiple Solutions


EVENTS

REGISTRATION IS NOW OPEN FOR WALK MS AND BIKE MSWalk and pedal towards a world free of MS with Walk MS and Bike MS! Sign up as a team captain, team member, individual or volunteer for either event and join a passionate community of people who want to do something about MS now.

WALK MS n MAY 7, 2017Chicago - Spring 2017** Rockford McHenry County South Suburbs North Shore St. Charles Northwest Suburbs West Suburbs

Visit walkMS.org to register!

BIKE MS n JUNE 10–11, 2017DeKalb, IL

Go to BikeMSIllinois.org to sign up with early bird pricing!


EVENTS

CHASED BY A ZOMBIESTUDENT GROUP AT EASTERN ILLINOIS UNIVERSITY PUTS A NOTEWORTHY SPIN ON 5K RUNImagine going for a casual afternoon run when all of a sudden, a zombie starts chasing after you.

Is this scenario possible? Probably not, but for a few hours every year, runners get a unique opportunity for this to become a reality at the EIU Zombie 5K.

This annual fall run in Charleston, Ill., puts an interesting spin on your typical 5K race. While runners navigate the course with three flags tied to their waists, volunteers dressed as zombies run the trail, trying to pull the runners’ flags off. If runners cross the finish line with their flags intact, they’ve survived the run. If not, they’re considered “zombiefied.”

The best part of all? The run raises money for the National Multiple Sclerosis Society as a DIY fundraiser.

The EIU Zombie 5K started as an idea for a class assignment by a student at Eastern Illinois University who had been diagnosed with MS.

“At EIU, there is a project management class that students are required to take. Students group up into teams to come up with an original project idea. The professor requires students to run the event through a student organization at school,” says Alex Miller, who is currently the vice president of fundraising for the Society of Human Resource Management, the student group that originally hosted the event and now organizes it every year.

After the Zombie 5K’s first run in 2013, participants realized the significant impact they could make in the lives of people living with MS, and it quickly became an annual event.

With the good-natured fun of the event, Miller recalls many entertaining memories out on the course (“watching the zombies get their makeup done by EIU’s theater department was awesome. Our zombies turned out looking great.”). But the most memorable moments happen when everyone comes together to support the run’s ultimate mission: to end MS forever.

VOLUNTEER ZOMBIE RUNNERS ALL MADE UP AND READY TO GO AT THE 5K


“One year, we had a couple runners print off papers that they pinned to the backs of their shirts. The papers read ‘I’m running for…’ and runners wrote someone’s name and included a picture,” recalls Miller. “It was very heartwarming to see.”

With a course filled with smiling survivors, zombiefied runners and ghoulish zombies alike, this run embodies the true spirit of DIY fundraising: taking a hobby, interest or creative idea and using it to get us all closer to a world free of MS.

“The race is for a good cause! We want all runners to know that they are donating their money and time to help find a cure for this disease,” shares Miller. “A world free of MS would definitely take away the symptoms and troubles that people living with MS have, and they would be able to live carefree lives.”

Visit eiuzombie5k.strikingly.com to learn more about the race.

Have your own DIY fundraising idea? Use your passion and hobbies to get us closer to a world free of MS! For more information, visit nationalMSsociety.org/DIY.


WAYS TO GIVE

MANY WAYS TO VOLUNTEERBY ALICIA GUILFORD

I met a unique set of people I now call my friends because of my volunteer activities with the National MS Society. Without these folks, I never would have found the Challenge Walk MS® event this fall in Cape Cod, Massachusetts. And what an amazing event it was! More than 600 people came together all for the same purpose: to end MS forever.

I made my first connection to Society through a Walk MS® event in 2003, less than a month after my official diagnosis. We raised a ton of money and raised awareness throughout the community. My husband and I volunteered at the next seven out of eight Walk MS events (I got sick one year and had to stay home). I was soon asked to join the Walk MS committee, and I recruited friends to help whenever possible. We made community connections by adding a silent auction and raffle to the walk to raise more money and give folks something fun to do when they returned from walking.

Once I was established on the Walk MS side of things, I was recruited for the Programs Committee. We worked together to connect with other people with MS to create fun and informative events about MS. I still help plan and attend as many programs as I can.

More recently, I connected with Vermont state legislators during MS Awareness week, wrote a letter of support for a bill proposed by the Vermont Government Relations Committee to provide tax breaks for Vermonters who make accessibility modifications to their homes, and was a volunteer photographer at the past two annual MS Education Days. I am also a member of the Home LINKS Committee in Greater New England.

Volunteering gives me the opportunity to make connections with so many wonderful people. I feel strongly that I have been given much more than I give. Everyone needs connections in their lives and I have more because of volunteering. I encourage everyone to call the National MS Society at 1-800-344-4867 and find out how you can help — you never know where it might lead.

Also visit nationalMSsociety.org/volunteer to get involved. n

Alicia Guilford lives in Cambridge, Vermont, where she recently built her forever home with her husband.

ALICIA WITH HER HUSBAND, JEFF


NEWLY DIAGNOSED

IS IT HARDER TO WORK WITH MS?JULIE STACHOWIAK, PhD

Many people with multiple sclerosis find it difficult to continue working, even in the early years of the disease. Tasks that seemed challenging before MS can become seemingly insurmountable afterward. The fluctuation of daily symptoms and unknown levels of future disability make mapping out a strategic career path a challenge, to say the least. We simply do not know what the future holds around our ability to perform a job.

“I AM ABLE TO WORK MORE WHEN I FEEL GOOD, LESS WHEN I FEEL BAD, AND TAKE A QUICK NAP IF NEEDED.”

I am lucky enough to be able to work from home. I am able to work more when I feel good, less when I feel bad, and take a quick nap if needed. There are days when I can work a full day, but there are many days when I do not feel productive at all — when even looking at the computer screen feels like torture.

I know that as each year has gone on, the problems that I have had in trying to work efficiently seem to get worse. However, recent research indicates that some people who are newly diagnosed or have had an episode of a clinically isolated syndrome may already need to adjust their time at work.

Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently diagnosed with MS. In the Cognition and Socio-Economics (COGNISEC) study, the researchers studied 45 people who had been diagnosed with MS or had a clinically isolated syndrome within the past two years and have been on disease-modifying therapy for less than six months or not at all.

WHAT THEY FOUND: n People with higher levels of fatigue and

disability all decreased their working hours within 12 months following diagnosis.

MEMORY ISSUES MAY IMPACT EMPLOYMENT


n Lower long-term memory scores correlated with a lower number of hours and days spent working during the week.

n People who scored lower on “focused attention” and “speed of memory” were more likely to say they “wished to work less.”

n Scores on tests assessing depression (Beck Depression Inventory) did not correlate at all with quantity of working hours.

While its findings need to be replicated in larger studies, so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of MS.

WORKING A BALANCEWhat does this mean? Let’s face it, even jobs that we love can lose some of their luster when we have to negotiate symptoms that add to our physical disability. While it is tempting to keep pushing ourselves to do more and overcome some of these challenges, it is important to remind ourselves that we may have very real cognitive symptoms related to our MS that are impacting our abilities to work the same way we did in the past.

“... SO FAR THIS RESEARCH SHOWS THAT COGNITIVE DYSFUNCTION CAN NEGATIVELY IMPACT THE CAPACITY TO WORK, EVEN IN THE VERY EARLY STAGES OF MS.”

On the other hand, many people with MS continue working long after their diagnosis. Disease-modifying therapies, new technologies, better symptom management, legal employment protections and community resources can help you remain in the workforce — and education and preparation can be your most powerful tools for success.

Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and www.ms.about.com. Originally posted at blog.nationalMSsociety.org

TOOLS TO WORKIf you’re struggling to keep up at work, but aren’t ready to throw in the towel just yet, visit www.nationalMSsociety.org/ employment or call an MS Navigator at 1-800-344-4867 to learn more about your options and get connected with employment resources in your area.

The Job Accommodation Network at www.askjan.org also offers information on a range of subjects for working people with disabilities.

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IL 60014Permit No. 174

525 W. Monroe St. Suite 1510Chicago, IL 60661

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

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

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

✁

n Volunteer registration is now open for our 2017 fundraising events! Sign up today online or by calling 1-800-344-4867.

n Walk MS (10 statewide sites), May 7 and Sept. 17, www.walkms.org

n Bike MS (DeKalb, Illinois), June 10 and 11, www.bikeMSillinois.org

n MuckFest MS (Grayslake, Illinois), Sept. 16, www.muckfestMS.com

n Stay connected to learn about ways to volunteer — Join the Volunteer Group on Facebook: www.facebook.com/groups/MSGreaterILVolunteers or Twitter @msgreateril

n Do you know of someone who is going above and beyond in their volunteerism efforts with the National MS Society? Nominate them to be an “Everyday Hero” where their story will be featured on the Greater Illinois website. Send an e-mail to [email protected] with your suggestions.

SAVE THE DATE MS HALF COURT CLASSIC CHICAGO n MARCH 18, 2017MS AWARENESS MONTH NATIONWIDE n MARCH 2017WALK MS, SPRING STATEWIDE n MAY 7, 2017BIKE MS: TOUR DE FARMS DEKALB, IL n JUNE 10-11, 2017

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

ms connection newsletter · year i lace up. ” not ready to lace ... well taken care of....

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