PA Keystone Chapter, MS Connection: Fall/Winter 2015 by Jennifer Staab

FALL/WINTER 2015 PENNSYLVANIA KEYSTONE CHAPTER

MS CONNECTION NEWSLETTER GINA (CENTER

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NEWLY DIAGNOSED: LIVING WITH MS: CHECK UP ON YOUR RELATIONSHIPS HEALTH AND MS

MONEY MATTERS: UPDATE ON WORK INCENTIVES

2014

IN 2010

14-15 ADVOCACY: HAVING A SAY

2 NATIONAL MULTIPLE SCLEROSIS SOCIETY Pennsylvania Keystone Chapter 1-800-344-4867 Pittsburgh Office 1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 Harrisburg Office 2000 Linglestown Rd, Ste 201 Harrisburg, PA 17110 Chairman: William Shrader Chapter President: Anne Mageras Editor: Debbie Garrison Design: Jennifer Skinner © 2015 National Multiple Sclerosis Society, Pennsylvania Keystone 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.

MS CONNECTION: FALL/WINTER 2015

A SUCCESSFUL YEAR, THANKS TO YOU! FROM THE BOARD PRESIDENT, WILLIAM SHRADER This season offers a time to reflect and give thanks, as well as look forward in anticipation to the new year. Our first year as the PA Keystone Chapter was a success. I will take this opportunity to thank every volunteer, staff member, donor, sponsor and anyone who contributed in any way to the accomplishments of this past year. Thank you! Thank you for your contributions so that each person can be more powerful than the challenges of MS. Our first PA Keystone Chapter Annual Meeting was held on November 19, 2015, simultaneously, in four locations. The meeting sites included Harrisburg, Pittsburgh, Scranton and Erie. We accomplished a lot in one evening. We welcomed some new members and voted to keep a few of the old ones, as well. Everyone in attendance received a thorough update on the latest breakthroughs in MS Research. The update was full of promise, and indeed, it is a promising time. I think everyone in the room sensed that we are getting closer to the day when we Stop Multiple Sclerosis, Restore Function and End MS Forever. So how close are we? Well, I hope that you have heard by now that many of us are dreaming of the day, looking ahead if you will, to when we can fully experience a World Free of MS. It so happens that we are already planning a bit of a celebration. What am I talking about? Haven’t you heard? It’s about the latest social media craze, #HappyDanceMS. I hope that you have heard of it. In fact, I hope that you have accepted the challenge to participate in it. With your help, this dance celebration can bring us that much closer to

NATIONALMSSOCIETY.ORG | 1-800-344-4867 continued from page 2 a realization of our dream. This campaign has the ability to change our Chapter, and to impact our cause on a national level.

#HAPPYDANCEMS – WHAT IS IT?

If you’ve not yet joined this movement, look for If MS was cured tomorrow, we’d all be dancing, more information in this newsletter and show us dancing for our friends, our family and your Happy Dance! Help us on our quest for a ourselves! cure. Here are the #HappyDance MS ingredients: In closing, I am very proud of the PA Keystone • One or more people willing to do a 5-second Chapter staff, and again, I offer my thanks. On dance October 16 and 17, we held our first event of the • One smartphone to shoot video of the dance 2015/2016 year. That event was the Mille for MS • One donation to #HappyDanceMS website and it was a success. It was at that event that one • One upload to facebook/twitter/youtube of the staff, Scott Garner, first pitched the idea • One or more challenges issued to family and of the Happy Dance. We turned him loose that friends weekend and he and the rest of the team went into attack mode. In just one month, we launched the Happy Dance program. It is this kind of effort that we continually see from the PA Keystone Chapter staff, and it is this kind of commitment that will help us win against MS in the end.

On behalf of the PA Keystone Board of Trustees and the staff, we, once again, send out a big thank you to each of you, as well as our good wishes for a joyous holiday season and a prosperous new year. n

TRIBUTES AND MEMORIALS If you want to honor someone living with MS or memorialize a loved one who passed away, please consider naming the Pennsylvania Keystone Chapter of the National MS Society as the charity of your choice for donations. All contributions help to support local programs and services and fund MS-related research efforts. All tributes and memorial gifts are appreciated.

Based on the epic success of Ice Bucket Challenge, we came up with our own effort for MS awareness and fundraising. Example videos are now on social networking sites. Donate as little as $10 to get started, create your own team on our website if you wish to track your fundraising too! Most of all, share everywhere and have fun happy dancing! Visit HappyDanceMS.org to donate or learn more and let’s go viral! n Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. To register call 1 800-344-4867, or visit nationalMSsociety.org/knowledge.

MS CONNECTION: FALL/WINTER 2015

continued from page 4 advocate for this and other priority issues. Frank has testified at a Congressional roundtable about the importance of MS data to advance research. Congratulations, Frank!

FROM THE CHAPTER PRESIDENT, ANNE MAGERAS Last week over 1,000 people came together to attend the Society’s National Leadership Conference, in Fort Worth, Texas. The theme of this year’s NLC Conference was “together we are STRONGER”. I wanted to take a moment to share about five special individuals and one foundation, from the Pennsylvania Keystone Chapter, that were celebrated at this year’s conference. The have encouraged us to reflect on the power of our shared experiences as leaders in the MS movement. One family living in Central PA has demonstrated for the past 30 years, how together they are stronger than MS. Dolores, who is 84, has a daughter, Donna, who lives with progressive MS and in a nursing home. Her granddaughter, Janelle lives with MS, too. She manages her MS symptoms with medications, work, and a very busy, full life with her husband and four children. I had the pleasure of spending time with Dolores and Janelle at the NLC last week. Although I have never met Donna, I am sure she has the same love, spirit and determination that I saw in Dolores and Janelle. Dolores has raised over $250,000 for WALK MS by simply composing thousands of handwritten notes to friends and family members to raise funds. Janelle conducts DIY fundraisers at the restaurant where she works and also participates in Challenge WALK and Muckfest for MS. As we were leaving the conference, Janelle said something that inspired me to write this message. She said, “grandma was there for me when my mother was unable to care for me, and I need to be here now for grandma”.

We also had two local supporters of the Society who were honored as members of the Chairman’s Circle. To become a member of the Chairman’s Circle, one must demonstrate a commitment to the Society’s mission to bring us closer to a world free of MS. This is done through exemplary financial leadership and generosity by giving or raising $500,000 or more. This year, The Dorothy B. & Donald L. Stabler Foundation (Harrisburg, PA) and Robert L. Glimcher (Pittsburgh, PA) have joined the Chairman’s Circle. Thank you for your impactful leadership and inspiration! Together we are STRONGER – and these six special contributors have truly demonstrated the theme of the conference. They are outstanding leaders of the MS movement. They have inspired and connected their communities so that people affected by MS can live their best life. They have made a difference in our efforts to stop MS in its tracks, restore what has been lost and end MS forever. n ADVERTISEMENT

JANELLE AND DOLORES

What a tribute to 3 remarkable women who together are STRONGER than MS. Also celebrated at the conference was Frank Austin, a District Activist Leader in the Pittsburgh area, and a member of the Pennsylvania Government Relations Committee. He was inducted into the Volunteer Hall of Fame for his advocacy work. Frank is committed to helping establish access to quality, affordable healthcare for all. As a veteran living with MS, Frank is passionate about MS Congressionally Directed Medical Research Program funding and frequently utilizes social media to

NATIONALMSSOCIETY.ORG | 1-800-344-4867

BRING HOLIDAY CHEER TO NURSING HOME RESIDENTS! HOLIDAY GIFT

PROGRAM!

Each year, our Chapter coordinates this program to provide gifts to people living with MS who reside in long-term care facilities. Knowing that nursing homes and personal care homes can sometimes be lonely places, we strive to put a smile on the faces of these individuals and let them know that the Chapter and many in the MS community is thinking of them. We would like to challenge you to make a commitment to this great program and to directly impact a person’s life this holiday season! We need your help to make this program a success. Learn more or donate today by calling Pam at 1 800-344-4867. n

KEEP S’MYELIN Keep S’Myelin is published quarterly by the National MS Society for children 5-10 years old with a relative who has MS. The newsletter contains games, fun, and information. Call the Chapter at 1 800-344-4867 or email keepsmyelin@nmss.org.

National Multiple Sclerosis Society’s United Way workplace giving designation code for Allegheny County only is: 898

6 NEWLY DIAGNOSED

CHECK UP ON YOUR HEALTH

When I think of my health, multiple sclerosis dominates my thoughts. I run through my inventory of symptoms that are acting up and medications that are causing side effects. Usually, it’s only when I have something like a cold or a stomach virus that it occurs to me that there is more to my physical health than my MS. Unfair as it might seem, people with MS are subject to the same health problems as people who are not living with the disease. We have the same lifestyle and aging issues. We have to consider preventive care for things like heart disease, high blood pressure and cholesterol as we age. Women need to get mammograms and pap smears on a regular basis. We need to keep up with immunizations, as well as visits to dentists and eye doctors. (Visit www.nationalMSsociety.org/ preventivecare for preventive care recommendations.) There are also special risks that we have that are directly or indirectly related to our MS, such as:

MS CONNECTION: FALL/WINTER 2015

• Osteoporosis: People with MS are more likely to have osteoporosis (loss of bone density). This is due to a number of factors, including limited mobility, low levels of vitamin D (which is essential for calcium absorption) and excessive use of corticosteroids (for instance, many SoluMedrol courses over a short period of time). Your doctor can order a bone scan to test for osteoporosis. • Depression: Depression can be a primary symptom of MS. It can also be indirectly caused by the losses and unpredictability of MS. Your neurologist or general practitioner should be able to refer you to a psychologist or psychiatrist to treat your depression, preferably one with experience treating patients with MS. • Vitamin deficiencies: People with MS tend to have low levels or deficiencies of vitamin D and vitamin B12. Ask your general practitioner about tests and a treatment plan if needed. Make an appointment to see your regular doctor and get the rest of yourself checked out. The last thing that any of us needs is additional health problems that could have been caught early or prevented by taking action. n Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and www.ms.about.com. Originally published at blog.nationalMSsociety.org.

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LIVING WITH MS

FORMER COLLEGIATE FOOTBALL COACH AND LIFE WITH MS RICKY DIGGS STORY

We all had a reaction when the doctor told us. “You have been diagnosed with multiple sclerosis”. The first thing that came to my mind was, “Am I going to end up like Richard Pryor?” Once my neurologist put that thought at ease, it was now time to find out what was next. I have been a healthy individual all my life. I had a very successful collegiate football career. I coached college football at 5 different universities. I was an active jogger and spent many hours in the gym. Then the time came when I could no longer do those things.The disease progressed where I no longer could sufficiently perform my duties in the workforce. I returned to my hometown of Harrisburg, Pennsylvania, not because of my disease, but to be the major caregiver of my 86 year old mother who has dementia. I was just given the most important job of my life. Mentally, I could not dwell on what I could not do. I had to enhance what I can do. Multiple sclerosis affects the extremities on the left side of my body. There is a silver lining in that: If it affected my right side, I would not have the ability to drive. My ability to walk has become difficult. I was fortunate enough to attain a mobile wheelchair through my health insurance. The Pennsylvania Department of Transportation put me through a battery of exercises in order for me to maintain my driving privilege, simply because they observed me in my wheelchair. Each challenge they gave me I met successfully. The Society assisted me in purchasing a lift to put in my van to transport my wheelchair. Later, the Society assisted in installing a chairlift in my home to help me go up and down the stairs. Thank God for the Society! Their help allows me to maintain my independence. I awake each morning looking forward to conquering my challenges of the day. I am grateful just to have that opportunity. I wake and live each day to serve others with every ounce of strength I have left. n

MS CONNECTION: FALL/WINTER 2015

LIVING WITH MS

intimate and if they would like to be intimate again? “Absolutely,” both of them said. It turned out that each of them was very sure why they were not initiating intimacy.

RELATIONSHIPS AND MS The National MS Society recently sat down with psychologist Dr. Peggy Crawford to discuss relationships and multiple sclerosis. Dr. Crawford has worked with people with MS and their families for 25 years. She was a staff member of the Mellen Center for Research and Treatment of MS at the Cleveland Clinic and then a faculty member of the Department of Neurology at the University of Cincinnati. Dr. Crawford is also involved with the Society, serving as a presenter, consultant and committee member, and is a program staff member at CAN DO MS.

WHAT’S THE GREATEST CHALLENGE THAT COUPLES LIVING WITH MS FACE WHEN IT COMES TO INTIMACY? I think that the primary challenge is communication. When people aren’t talking to each other, they can make a lot of assumptions about what the other person is thinking or feeling. This can become a major obstacle that impacts physical, emotional, and sexual intimacy. Sometimes issues have to do with how people are communicating. Couples also express themselves to each other through body language and actions. These can include spending less time with each other or negative facial expressions. Nonverbal communication can make you feel like you’re

The woman, who had MS, said, “It’s because I’m sure he is no longer attracted to me. I’ve had to take steroids that have caused me to gain weight. I don’t initiate intimacy because I just don’t think it’s going to work. I just don’t think he is going to want to have sex.”

RELATIONSHIPS NEED CARE AND ATTENTION. not communicating much, when in fact you are communicating a lot.

DO YOU HAVE ANY ADVICE FOR OVERCOMING COMMUNICATION BARRIERS? One of the things people can do is clarify why there isn’t more or better communication. I’ve worked with couples where the support partner avoids talking about changes in their relationship that are due to MS because the person with MS may become distressed. Sometimes it takes professional assistance to get that communication up and going again. It can also be helpful for people to share any assumptions that they’ve made about why they are not communicating and why they are not being intimate. I remember a couple who had been married almost 30 years who came to see me. It was clear that they cared about each other, but they hadn’t been physically intimate for years. I asked each of them why they thought they weren’t

NATIONALMSSOCIETY.ORG | 1-800-344-4867

The man said, “I don’t even hug and kiss you anymore because I’m so worried that is going to lead to sex, and I know you get those spasms in your legs, and your legs are stiff, and then it hurts you, and the last thing I want to do is cause you pain.” They went from being tearful to laughing and saying, “Can you believe this? All the kids are out of the house. This is our perfect opportunity in life to be intimate as often as we want.” They had never discussed the issue with each other.

WHAT OTHER BARRIERS MAY BE GETTING IN THE WAY? Another barrier is not having accurate or enough information about MS. Many times people don’t even realize sexual symptoms may be related to their MS. And sometimes even healthcare professionals are embarrassed to bring it up. (To learn more, visit www.nationalMSsociety.org/intimacy.) Sometimes couples just have very different coping and communication styles. Some people want to know everything about MS. Other people would rather not know all the details. Some people cope by talking about things out loud. Other people are more the silent types. These are characteristics

that couples bring to MS, not characteristics that MS brings to couples. So, if you already have differences, MS doesn’t necessarily make them better. On the other hand, some couples say that MS was the kick in the butt they needed to address their communication and relationship issues. I think sometimes we assume that everybody somehow should have learned how to communicate growing up, or that all people in committed relationships know how. Relationships need care and attention – they need to be a priority. Start by turning off the television and phone, making eye contact, summarizing what you think the person just said to you. Practice using “I” statements: “I feel sad.” “I feel frustrated when such and such happens.” The bottom line is that communication takes practice. n Originally published on www.MSconnection. org/blog.

Download “8 Hours to a Lifetime of Happiness,” a relationship enrichment course, and find other resources for couples living with MS at www.nationalMSsociety. org/family.

BE AN MS ACTIVIST! We are people who want to do something about MS NOW. Become an MS Activist today! For more information on how you can become an MS Activist contact: Mara Brough, Senior Manager of Advocacy, PA & NJ at mara.brough@nmss.org or visit our website at MSPAKeystone.org

MS CONNECTION: FALL/WINTER 2015

HEALTH

MONEY MATTERS

COPING WITH STRESS FINANCIAL WELLNESS PROGRAM BY ELISE AUGUSTINE

This program, which was created by UPMC Psychiatrist Dr. Bruce S. Rabin, will teach you how stress affects your mental and physical health and the course of Multiple Sclerosis. As you know, individuals who have this disease experience the same stresses that other people do; however, there are additional stresses that are unique to MS patients that are related to having a chronic disease. To help you achieve better quality of mental and physical health and potentially reduce your MS symptoms, you will take a journey where you will learn about stress, the use of behaviors that will improve your ability to cope with stress, and stress management techniques. To learn more about this free and voluntary program, please call Elise at the Chapter at 1 800-344-4867 ext 63223 or email her at Elise.Augustine@nmss.org. n

MONEY MATTERS

UPDATE ON WORK INCENTIVES

has increased from $1800/month gross income to $1820/month gross income.

DO YOUR RESEARCH It’s important to note that once a person’s monthly income exceeds the SGA, his or her SSDI benefits may cease. Before doing anything that could jeopardize your benefits, be sure to do your research on what impact work may have on your benefits. Below are some helpful tips:

BY ELISE AUGUSTINE

BY STEVE NISSEN

This eight week program is designed to help individuals find financial stability, by helping you understand ways to better manage your expenses and spending, and by helping you familiarize yourself with better budgeting methods. Additionally, this program will expose individuals to various community organizations, which are accessible for additional help and resources. Through this program, individuals will make a step toward financial independence in a more tangible and effective manner.

As of January 1, 2015, Social Security beneficiaries received a 1.7% cost of living adjustment, or COLA. However, COLA affects more than the • Contact your local Work Incentive Planning monthly benefit check that Social Security Disability and Assistance (WIPA) program and speak with Insurance (SSDI) recipients receive. It also affects a Community Work Incentive Coordinator certain work incentives that may prove useful when (CWIC). people with multiple sclerosis attempt to return to • Visit www.socialsecurity.gov/work/WIPA.html work. for information about the WIPA program.

To learn more about this free and voluntary program, please contact Elise at the Pennsylvania Keystone Chapter at 1 800-344-4867 ext 63223 or via email her at Elise.Augustine@nmss.org. n

DID YOU KNOW? Like us: /MSPAKeystone

NATIONALMSSOCIETY.ORG | 1-800-344-4867

National MS Society programs are available to anyone affected by MS. To learn about programs available to you, visit MSPAKeystone.org and select “Resources & Support”

THE TRIAL WORK PERIOD (TWP)

• Call the National MS Society at 1-800-344-4867 to speak with an MS Navigator who can connect you with your local WIPA program, or visit www. chooseworkttw.net/findhelp/.

For individuals who receive SSDI, the trial work period (TWP) allows them to retain their full financial SSDI benefits while they test their ability to work. The TWP comprises nine months • Learn more about Social Security work incentives by participating in a Work Incentive Seminar in a 60-month time period (the nine months Event online webinar. For information about do not have to be consecutive). For 2015, the upcoming events, or to access archived webinars, amount that a person with MS can earn to count visit www.choosework.net/wise. n toward the TWP has been increased from $770 per month gross income to $780 per month gross Steve W. Nissen, MS, CRC, is the Society’s senior income. Full benefits continue during this time director of Employment & Community Programs. regardless of how much a person earns.

SUBSTANTIAL GAINFUL ACTIVITY (SGA) After a person completes their TWP, they can take advantage of the Substantial Gainful Activity incentive, which helps people transition back to work. For 2015, the SGA has been increased from $1070 per month gross income to $1090 per month gross income for non-blind individuals. For individuals who are statutorily blind, the SGA

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12 MONEY MATTERS

2016 SCHOLARSHIP

MS CONNECTION: FALL/WINTER 2015 school located in the United States, Puerto Rico, U.S. Virgin Islands, Guam or any other U.S. territory for the 2016-17 academic year. (Students who are planning a mission trip, GAP year, or other experience and do not plan to enroll in college for the 2016-17 academic year should not apply now. Instead, plan to apply in the year you plan to enroll in college.) • Enroll in at least 6 credit hours per semester in coursework leading to a first-time degree, license or certificate.

The National Multiple Sclerosis Society Scholarship Program helps highly qualified students who have been diagnosed with MS, or who have a parent with MS, achieve their dream of going to college. Enrollment for the 2016 scholarship program is open between October 1, Students who have already completed 2015 and January 15, 2016. an undergraduate degree are ineligible Please see link for eligibility criteria, frequently to apply asked questions and to apply visit https://www. scholarshipamerica.org/mssociety/ On behalf of the PA Keystone Chapter, we wish all of our applicants success! n The application review and selection process is competitive. Not all applicants will be granted *Applicants who applied in a previous year and were an award. not selected for an award are not eligible to reapply to the 2016 National Multiple Sclerosis Society Applicants must meet all of the following criteria: Scholarship Program. Previous recipients from any year are eligible to reapply to the 2016 National • Current high school seniors, high school Multiple Sclerosis Society Scholarship Program. graduates (including students who have earned their GED certificate), or current 1999 DODGE GRAND CARAVAN LE VAN undergraduate students of any age who have • wheelchair accessible van MS or have a parent with MS and paln to • 6 cylinders; 3.8 liter engine • accessible via ramp on passenger side attend or are currently attending an accredited • swing-away ramp door postsecondary school working toward their • secured by a power lockdown in front pasfirst undergraduate degree.* senger side • lowered sill (10”) on driver’s side sliding door for • United States citizen or legal resident living easier access in the United States, Puerto Rico, U.S. Virgin • other conversion features Islands, Guam or any other U.S. territory. • 161,000 great miles; excellent care; • Plan to enroll in an undergraduate course • asking $3,500; power wheelchair may of study at an accredited two- or four-year be included for small additional cost college, university, or vocational-technical • 717-625-6165 ask for Tom

NATIONALMSSOCIETY.ORG | 1-800-344-4867

ADVOCACY

FEDERAL UPDATE BY MARA BROUGH

Every August, members of Congress return to their home states and hold town halls and other meetings with constituents. MS activists around the country take this opportunity to continue to build relationships with their U.S. Senators and Representatives. This August, MS activists throughout Pennsylvania held 10 meetings with their members of Congress and their staff to discuss our federal legislative priorities. Our priorities include the Advancing Research for Neurological Diseases Act, which will create a nationwide system to track the incidence and prevalence of neurological diseases, including MS, which could one day lead to a cure. The Ensuring Access to Complex Rehabilitation Technology Act which would create a separate recognition under Medicare for individually configured products like manual and power wheelchairs so that people with progressed MS can have their medical needs addressed and remain independent. Additionally, we spoke to members of Congress about raising the spending caps which were put in place by the Budget Control Act of 2011. These spending caps are having a dramatic effect on governmentsponsored research and other programs and services that are vital to people affected by MS. Our meetings were productive and members of Congress were receptive to our requests. We gained numerous supporters for our legislative priorities. We look forward to continuing to work

with our members of Congress and advocating for policies that help people affected by MS.

STATE UPDATE: MS Activists and the National MS Society are currently working on creating a home modifications tax credit in Pennsylvania. People living with multiple sclerosis (MS) sometimes find that it is necessary for them to modify their homes to increase accessibility and improve safety. Modifying a home may also allow a person with MS to maintain a connection to a job, or remain an active member of the community, or even to remain independent. However, these modifications can be prohibitively expensive. People with MS may benefit from financial relief—for example, in the form of credits when they file their taxes. If you have considered or taken steps in making your home more accessible, you can help these efforts by sharing your story. To learn about additional ways you can help, our advocacy priorities or to share your stories please contact Mara Brough, Senior Manager of Advocacy, at mara.brough@nmss.org or call her at (267) 765-5104. n (See Brent Kirkhard’s story of successfully advocating for home modification tax credit in Kansas-page 14.) ADVERTISEMENT

Heather Mayer, MS, PT PT / Neurological Specialist

The Village at Pittsburgh Mills 724-274-4333 1020 Village Center Drive, Suite N2D 724-274-4303 Tarentum, PA 15084 pghmills@westarmtherapy.com

MS CONNECTION: FALL/WINTER 2015

ADVOCACY

A WAY TO TAKE ACTION

HAVING A SAY BY BRENT KIRKHART

After my diagnosis with multiple sclerosis in 1997, I knew that I would be faced with obstacles, but didn’t know when they would occur or what they would be. I was a school teacher and coach, a former college athlete and father of two daughters. In my mind, I was still invincible.

YOUR BEST LIFE — DESPITE MS In 1999, my son was born and, like most fathers, I dreamed of the day I would get to run alongside him while teaching him how to ride his bike. That day came four years later. I placed my hand on his back and together we took off down the street ready for his first ride, or so I thought. My legs simply would not move. My son fell over on his bike and I could not run to help him. That was the moment I realized that MS was going to affect me more than I had anticipated. It had slowed me down and tainted a moment that I had looked forward to for years. My son is now 15 and all he’s ever known is a dad who has MS. He and his sisters, along with my wife, have grown into MS advocates who have attended State Action Day in Kansas as well as Walk MS events for almost two decades. Having the support of your family at home is important, but so is physically having a home that can support your family — a home that can help you live your best life despite MS.

BRENT KIRKHART ADVOCATE FOR POSITIVE CHANGE.

HOME FOR US For years, we lived in a California style split-level ranch house that had four flights of stairs. We loved our home, but it was not a safe space for me to navigate. The doorways were not large enough for my chair, the stairs were difficult to climb and falls were frequent and dangerous. I was limited to life on the first floor. We bid adieu to our family home last year and prepared to make memories in a new space. Upon arriving, I found out that my family and church had pitched in to build a small ramp at the entrance of our home so that I could cross the threshold in my chair with ease. In addition, we installed handrails on the shower, replaced the tub with a walk-in shower, installed a larger stool and widened the door to the master bathroom so that my chair could fit through the door. I didn’t think we would fall in love with a house like we loved our last home, but we did! For the first time in several years, I could finally move around to every corner of our home without relying on assistance.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

Knowing my story, the National MS Society reached out to me about moving forward with a home modification tax credit bill known as the Kansas Disabled Access Tax Credit. Last year, I was asked to speak and tell my story at Kansas MS Action Day. Not only did I get to speak in front of fellow MS activists, but I was invited to speak in front of the Senate State Tax Committee. As I spoke, I looked around the room and was overwhelmed by the concern and “want to help” expressions on the faces of committee members. The president of the committee took the floor and said, “We don’t usually do this, but I want to move this bill forward and vote right now to move this out of committee.” The group voted unanimously to do so.

STAYING THE COURSE Sadly, the bill did not move to the House before the session ended that year. During the interim time, I made it my mission to get to know the state representative of my previous home’s district. As the new legislative session began, he and his colleagues made sure to get the bill moving and made it retroactive so that people who made modifications in 2013 could benefit as well. It was passed in 2014 through both houses and signed into law by the governor. It was exhilarating! It’s common knowledge that home modifications serve people living with disabilities — but home modifications also serve their families. Being able

to make these modifications has given my family the comfort of knowing that I am safe. They know that together we can live in this house longer — as a family. n Brent Kirkhart was diagnosed with MS in 1997 and is a member of the Society’s Government Relations Committee for the Mid America Chapter. Originally published on MSconnection.org/blog. Learn how to have your say and become an MS activist at www.nationalMSsociety.org/advocacy. ADVERTISEMENT

MS CONNECTION: FALL/WINTER 2015

RESEARCH

COFFEE AND MS

BY NICHOLAS LAROCCA, PHD

Previous studies have suggested that caffeine may protect against Alzheimer’s and Parkinson’s disease, but there haven’t been any definitive studies in MS thus far. So I was intrigued by a study by an international team led by Johns Hopkins University researcher Dr. Ellen Mowry, which looked at coffee consumption in two large data sets—in a group of 1,629 Swedish people with MS and 2,807 people without MS, as well as a group of 584 people with MS and 581 controls enrolled in the Kaiser Permanente Health Plan of Northern California.

NEW DIRECTIONS IN DIET AND MS To think that you might be able to change the course of multiple sclerosis, or at least relieve symptoms, by eating or not eating specific types of food is enticing. However, “the proof is in the pudding,” scientifically speaking, since studying diet is challenging. That’s why it’s been exciting to see how many researchers were trying to do just that at the American Academy of Neurology’s annual meeting, which took place in Washington D.C., this April. Diet and MS was the subject of numerous platform talks and poster sessions, showing that clinicians and researchers are asking the same questions we hear so often from people who live with MS.

DIET AND MS SYMPTOMS In a small study, Dr. Rocco Totaro and a team from the University of L’Aquila in Italy tested whether a six-week diet that was low in saturated animal fats, and high in antioxidants, would be associated with positive changes in body composition and fatigue in 17 people with relapsing-remitting MS. In their study, the participants’ percentage of body fat decreased, and their fatigue as measured by a clinical scale lessened significantly as well. We need more and

COFFEE MAY LOWER THE RISK OF DEVELOPING MS, ALTHOUGH MORE RESEARCH IS NEEDED. larger studies like this, to show how diet may impact symptoms that affect the lives of people with MS. What does it mean for you now? A healthy diet certainly can’t hurt, and it may even help both MS and general health. (Abstract P2.211)

MORE ON SALT We’re hearing more and more about the possibility that salt may increase the immune activity in the brain and spinal cord in MS. A team from the Network of Pediatric MS Centers showed that this may not be the case in children. Looking at salt intake prior to diagnosis among 174 children or adolescents with MS, compared with 337 people without the disease, they saw no increased risk of developing MS with excess sodium intake. It will be interesting to see if this finding is confirmed, and whether it helps us to understand if, when and how salt becomes a factor in MS. (Abstract S38.003)

NATIONALMSSOCIETY.ORG | 1-800-344-4867

In the Swedish study, drinking six cups of coffee a day was associated with a reduced risk of developing MS, and four cups a day did the same in the American study. Studies like this may help us figure out how to prevent MS in the future. What this study doesn’t tell us is whether or how drinking coffee may impact MS in people who already have the disease, so it’s probably not a good idea to increase coffee consumption until we know more. (S45.004)

LOOKING IN THE GUT Gut bacteria is another area where research is increasing, and it presents the exciting possibility that probiotic strategies may ultimately be developed to treat MS. I’m pleased that a small pilot grant from the National MS Society helped launch the MS Microbiome Consortium, a collaboration of researchers in California, Colorado and New York who presented some

early findings from their analysis of blood and stool samples from people with MS treated with glatiramer acetate, untreated individuals and healthy controls. They found differences in gut bacteria between the treated and untreated individuals and also between those with MS and healthy controls. The team recently won a Collaborative MS Research Center Award from the Society to pursue this promising research. I’m eager to see more from this group, and to see how their findings can be translated into a way of stopping immune attacks in MS. (Abstract P2.205)

A NEW ERA Not so long ago, searching the medical literature for “diet and MS” yielded little. I’m thrilled to see that we are entering an era where diet and lifestyle are truly considered to be factors that can help lead to innovative treatments and ultimately free the world of MS. Visit www.nationalMSsociety.org/signup to sign up for MS eNews and stay up to date on MS research. n Nicholas LaRocca is the vice president of Health Care Delivery and Policy Research at the National MS Society. Originally published on MSconnection.org/blog

MS CONNECTION: FALL/WINTER 2015

CHAPTER HIGHLIGHT

2016 AMERICORPS PROGRAM The Pittsburgh Health Corps is a program of the National Health Corps AmeriCorps program. Since 1994, the Pittsburgh Health Corps (PgHC) has been based at the Allegheny County Health Department, which fosters collaboration between members and agencies throughout the Pittsburgh area. The PgHC is committed to decreasing disparities in local healthcare delivery systems and promoting health. They collaborate with a broad range of sites to ensure members are exposed to diverse opportunities in public health. Sites typically include homeless healthcare clinics, schools, health centers, and inter-generational community programs. This is the fourth year in a row that the Chapter has been engaged in the AmeriCorps program. The current service member is Elise Augustine. Born and raised in Pittsburgh, she is excited to make a difference in the community. Elise is the Chapter’s Outreach Coordinator for persons with MS. A majority of her time is focused on helping folks get connected to resources and providing support outreach to education persons in the MS community. Elise also implements the Coping with Stress program created by Dr. Bruce Rabin and the Chapter’s Financial Wellness Program. She attends two of the Pittsburgh-based MS Clinics as well as hosting Chapter vendor tables at local health fairs. Elise also plans to attend several MS Connections groups during her time with the Chapter. If you have any questions for Elise, feel free to reach her at 1 800-344-4867 x63223 or email her at Elise.Augustine@nmss.org. n

2015 EVENT WRAP UP

CYCLISTS ACCEPTED THE CHALLENGE – NOW SET YOUR SIGHTS ON 2016!

We are happy to report on the 2015 Bike MS: Series, including Bike MS: Escape to the Lake, the Keystone Country Ride, Mason-Dixon Challenge and the Cook Forest River Ride. The great success of all four of our Bike MS rides enables us to create awareness and raise critical funds that move us closer to a world free of MS. With nearly 1,800 cyclists, the 2015 Bike MS series raised more than $1.5 million! We are forever thankful to all the people who played a part in making the 2015 Bike MS season a success. From cyclists and volunteers, to sponsors and supporters, we are proud to call these people a part of our Bike MS family. n

NATIONALMSSOCIETY.ORG | 1-800-344-4867

2015 EVENT WRAP UP

(PRONOUNCED ME-LAY)

WAS HELD SEPTEMBER 25, 2015

Passion for driving and car culture mixes with passion to create a world free of MS!

The results are in and Lobsterfest for MS had a net total this year of $46,300.00! Our best year ever! Thank you to the over 500 attendees!

Based on the famed Mille Miglia (The Thousand Miles) in Italy, our countryside road rally allows entrants to ride with classic and exotic cars through central Pennsylvania. We open with a Friday night car show and cocktail party with live entertainment at Sun Motors Porsche. The next morning finds driver and navigator having a brief breakfast and then a timed release from the starting line. The idea is to get to 2 check points and then to the finish as close to the ideal rally time without going too fast or too slow, either can cause you to lose the rally. Closest to ideal time wins the coveted Mille awards 1st ,2nd,3rd and those bragging rights! This year we ended with several laps on the Pocono Speedway “The Tricky Triangle” before lunch.

Special thank you to Co-Chairperson Nancy Campbell and Donna Bon and the entire Lobsterfest for MS Committee!

MILLE FOR MS

Lobsterfest for MS

Thank you to our sponsors! Presenting Sponsors: M & T Bank & UPMC Altoona. Silent Auction Sponsor: Highmark Live Auction Sponsor: Susquehanna Bank Dessert Sponsor: Burgmeier Hauling

If you and your navigator want to try Mille For MS 2016, goto www.milleForMS.com for more information and event photos. In 2016 we will end Save the date for next year September 23, 2016! n for the first time in State College! n ADVERTISEMENT T he L if t P rofessional

AU T H O R IZED D I S T R I B U TO R C H EN E Y S TA I R & W H EEL C H A I R L I F T S

B ar r ie r Fre e St air lif t s 275 Cur r y H ollow Road Pit t sb urgh , PA 1523 6

412- 653 - 6 45 0 1 - 8 0 0 -28 8 - 5 6 2 5 FA X 412- 653 - 6 415

MS CONNECTION: FALL/WINTER 2015

NATIONALMSSOCIETY.ORG | 1-800-344-4867

WAYS TO GIVE

A PROMISE TO KEEP For Thomas Gibbs, multiple sclerosis is one family tradition he wants to end. He was diagnosed with the disease in 2004, just weeks before his first daughter was born (he and his wife Meredith now have four children). “My great-grandmother had it, my mother has it, I have it—and I DON’T want my children to have it,” he emphasizes. Through Bike MS, Gibbs raises awareness and money while also having a great time. “I feel passionate about the cause, but Bike MS weekend is just a ton of fun!” says Gibbs, who lives in Bothell, Wash., about 20 miles north of Seattle. Last year, he and his Bike MS team, the Mutineers, hosted a hotdog fundraiser with a donated keg of beer, which they offered in exchange for a donation. Gibbs personally thanks each donor, making sure they know how much his or her support means to him. He also wants to tell people what it’s like to live with MS. “There is no cookie-cutter definition for how MS impacts the person living with it. If you know someone who has MS, listen to what they have to say.” Gibbs stresses that the fun of Bike MS has a deeper meaning—specifically, a better life for people with MS. “Raising money and

GINA (CENTER), DIA GNOSED IN 2010

THOMAS GIBBS (CENTER, IN RED HELMET) WITH HIS BIKE MS TEAM, THE MUTINEERS. advocating will impact the lives of people all over the world for the better, but getting active through Bike MS will give you a better quality of life, too,” he says. “You’ll feel good about it, I promise.” n

I RIDE WITH MS People who participate in Bike MS may do so to support family members, friends or coworkers who have been diagnosed with MS. But, there are also legions of participants who live—and ride—with the disease, despite challenges such as fatigue or weakness. The I Ride with MS program recognizes Bike MS cyclists who are also living with MS. Anyone living with MS interested in cycling to support the MS movement can join the program, enjoy special day-of-event benefits and receive a complimentary “I Ride with MS” jersey. Genzyme and MS One to One, and Primal Wear are are proud supporters of the I Ride with MS program, available through all 100 Bike MS events nationwide. Visit www.BikeMS.org for more information or to register for the program.

ED IN 2015; LYNNE

OS HAYLEY (L), DIAGN

IN 2008 (R), DIAGNOSED

2016 LOCATIONS Sunday, April 17th Pittsburgh: Point State Park West Shore: Adams-Ricci Community Park Williamsport: Pennsylvania College of Technology York: John Rudy Park

Sunday, April 24th Beaver: Beaver High School Bedford: Shawnee State Park Dubois: Treasure Lake, Lakeview Lodge & Conference Center Hershey: Hershey Middle School Hollidaysburg: Hollidaysburg Jr. High School Lancaster: Clipper Magazine Stadium Washington: Tanger Outlets

SED IN 2014

LATIAH (R), DIAGNO

Saturday, April 30th Erie: Presque Isle State Park Indiana: Indiana Area Senior High School Uniontown: Uniontown Fire Department Social Hall Sunday, May 1st Bloomsburg: Bloomsburg Town Park Gettysburg: Gettysburg Area Recreation Authority Greensburg: Kirk S. Nevin Arena Johnstown: UPJ - Conference Center Lewisburg: American Legion Post 182

Saturday, May 14th Bradford: Pitt Bradford Blaisdel Hall, Univ. of Pittsburgh Northeast: Kirby Park State College: Medlar Field at Lubrano Park Sunday, May 15th Meadville: Roche Park BILL, DIAGNOSED IN 2010

Saturday, May 7th New Castle: Cascade Park

NOSED IN 2012

LAURA (CENTER), DIAG

PRESENTED LOCALLY BY

PREMIER LOCAL SPONSORS

MS CONNECTION: FALL/WINTER 2015

VOLUNTEER

GIVE THE GIFT OF TIME – VOLUNTEER! It is that time of year again when the National MS Society, PA Keystone Chapter needs help at events all across the area! From event volunteers who help with registration, set-up, clean-up and route support to those who dedicate time in the office – we need your help in 2016! All it takes is a few hours and positivity to engage in volunteering for the National MS Society. If interested please contact Susan Cook: susan.cook@nmss.org or 1 800-344-4867 and she will be happy to advise you on how you can become a 2016 MS Volunteer! n

FINISH MS

NATIONALMSSOCIETY.ORG | 1-800-344-4867

YOUR GIFT MAKES A DIFFERENCE When considering your end of the year giving, please consider making a donation to support those affected by the challenges of MS.

Please make checks payable to the National MS Society, or complete the information below to process your credit card payment. All gifts are tax deductible. Return your form with payment to: NMSS, 1501 Reedsdale Street, Suite 105, Pittsburgh, PA 15233 Name on Card: ______________________________ Phone#: ____________________________________ Mailing Address: _____________________________

The NMSS relies on generous individuals, such as yourself, to help us “Create A World Free of MS”!

___________________________________________

We thank you in advance for your generosity and your commitment to joining the movement to do something about MS NOW!

Card #: _____________________________________

Email Address: _______________________________

Exp. Date: _______________ CVV #: _____________

Your gift makes a difference!

Sincerely, Your contribution supports local programs and services and MS Research. Total Charged: $_______________ Chapter Staff and Board of Trustees Pennsylvania Keystone Please be part of the movement to create a world free of MS! Chapter, NMSS Signature: ___________________________________

Gift

Cost

RUN FOR A REASON AT THE 2016 DICK’S SPORTING GOODS PITTSBURGH MARATHON!

Box of candy and package of socks for nursing home resident with MS

$10.00

Bathroom grab bag

$15.00

Book of Access tickets

$25.00

Thinking about running in the 2016 Pittsburgh Marathon?! GREAT! Do something good for yourself and for your community by Joining the MOVEMENT!

Incontinence supplies for one month

$50.00

Kids Camp bus ticket

$70.00

Join our Finish MS team, commit to help raise critical funds for those living with MS and enjoy FREE registration for the 2016 Dick’s Sporting Goods Pittsburgh Marathon on Sunday, May 1st. Whether you are looking to run in the full marathon, half marathon, 5k or as part of a relay team – we want YOU to Run for a Reason!

Round trip wheelchair transport to MS Center

$75.00

Cooling vest combo pack: cooling packs, wrist and neck wraps

$100.00

One week emergency shelter for pet at Animal Friends

$150.00

As a member of the 2016 Finish MS Team, we are committed to helping you reach your mental, physical, and fundraising goals. We will provide you with all of the tools you need, while our seasoned fundraising and running coach, Dan, is right alongside you (yes he’s running the marathon too!) to support you along the way.

Yoga classes for 12 weeks

$200.00

One window unit air conditioner

$250.00

Light-weight travel wheelchair

$300.00

Simply visit MSPAKeystone.org or contact Dan Siegert at dan.siegert@nmss.org or 1 800-344-4867 to register or learn more! n

One tank of heating fuel

$400.00 Totals:

Qty

Total

NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Pittsburgh, PA Permit # 3047

1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 1 800-344-4867

The official registration and financial information of the National Multiple Sclerosis Society, Pennsylvania Keystone Chapter, may be obtained from the Pennsylvania Department of State by calling, toll free within Pennsylvania, 1 800-732-0999. Registration does not imply endorsement.

SAVE THE DATES 2016 BIKE MS

Bike MS will take you further than you’ve ever gone before. It’s not the miles that matter – it’s the unforgettable journey. Join us for an event that’s more than a ride – it’s anticipation, camaraderie, personal accomplishment, and the knowledge that you’re changing lives… making every mile that much sweeter. Don’t just ride, Bike MS 2016. Save the Dates! Bike MS 2016 registration will be open soon, so mark your calendars for one (or all 4) of our unforgettable rides! Bike MS: Escape to the Lake; June 11th - 12th 2 day (one day option available), 150 mile ride Bike MS: Keystone Country Ride; July 23rd - 24th 2 day, 150 mile ride Bike MS: Mason-Dixon Challenge; August 6th - 7th 2 day (one day option available), 150 mile ride Bike MS: Cook Forest River Ride ; September 19th 1 day ride, 35 or 60 miles