SPRING 2015 MICHIGAN CHAPTER
MS CONNECTION NEWSLETTER ANNUAL MEETING AND RECOGNITION BREAKFAST This year’s Annual Meeting & Recognition Breakfast will be Saturday, March 7 from 8:30 a.m. to 12:30 p.m. at the Ukrainian Cultural Center, 26601 Ryan Road, Warren, MI 48091. At this meeting we will recognize key volunteers, top individual fundraisers, and top fundraising teams for their outstanding contributions in 2014. All are invited to join us for this inspirational and informative morning. Our guest speaker is Dr. Robert Motl, Associate Professor, Department of Kinesiology and Community Health at the College of Applied Health Sciences at University of Illinois, Urbana-Champaign. Dr. Motl investigates the relationship between physical activity and multiple sclerosis. Currently, he is piloting the Internet Physical Activity Intervention in MS Project, or In-PhAIMS Project, a 12-week online program that encourages people living with MS to become more active and helps them develop the skills they need to maintain and increase levels of physical activity. He has also studied the relationship between physical activity and quality of life, the use of cycling to alleviate muscle spasticity, and the impact of MS symptoms on physical activity over time.
DR. ROBERT MOTL, THE GUEST SPEAKER AT THE ANNUAL MEETING & RECOGNITION BREAKFAST.
The Board of Trustees of the National Multiple Sclerosis Society, Michigan Chapter is elected each year during the meeting. If you or someone you know is interested in serving on the Board, please contact Elana Sullivan, Michigan Chapter President at 248-351-2190 or email Elana.Sullivan@nmss.org prior to Friday, February 27.
INSIDE 2&3 THIS ISSUE MICHIGAN CHAPTER ACHIEVES HONORS
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PROGRAMS & SERVICES: UPCOMING EVENT INFORMATION
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FUNDRAISING: MUCKFEST MS
14&15 LIVING WITH MS: RECOGNIZING ANXIETY
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MS CONNECTION: SPRING 2015
Mailing Label Changes
Please check the appropriate box below, correct the label then return to National MS Society, MI Chapter q Name change or misspelled q Address change q Remove from mailing list q Received more than one copy q Please send me my MSConnection via e-mail. My e-mail address is: ____________________________
GET CONNECTED: Michigan Chapter nationalMSsociety.org/mig info@mig.nmss.org Like us: facebook.com/nmssmi Follow us: twitter@nmssmi.com Watch us: youtube.com/mignmss SIGN UP to receive Society emails at nationalMSsociety. org/signup JOIN the MSConnection.org community TALK to an MS Navigator 7 a.m. - 6:30 p.m., Monday - Friday at 1-800-344-4867, Option 2
NATIONAL MS SOCIETY, MICHIGAN CHAPTER ACHIEVES MULTIPLE HONORS AS ONE OF THE BEST PLACES TO WORK Ranked #1 in Crain’s Detroit Business “Coolest Places to Work” n
Captures Nationally Renowned “2014 When Work Works Award” for Sixth Straight Year The National Multiple Sclerosis Society, Michigan Chapter is the proud recipient of two prestigious honors that highlight the impact of its innovative work culture. Both Crain’s Detroit Business and the Society for Human Resource Management & Families and Work Institute gave their top honors in 2014 to the Michigan Chapter, which has extensively revamped its workplace culture and operating norms to better accommodate its team and respond to the ever-present cost pressures that face non-profit businesses every day. “Our team strives every day to assist, motivate, educate and give hope to everyone in Michigan affected by MS, fueled by a vision of a world free of this disease,” said Elana Sullivan, Michigan Chapter President. “To truly deliver on this mission, we got creative and made some innovative changes that brought benefits to our team and to our operations simultaneously.” Originally driven to drastic cuts by the economic crash in 2008, Sullivan said the Chapter leadership worked hard to become innovative in their workplace policies and looked to build an
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NATIONAL MULTIPLE SCLEROSIS SOCIETY Michigan Chapter 21311 Civic Center Drive Southfield, MI 48076 1-800-344-4867
PHOTO CREDIT: JOHN SOBCZAK
atmosphere that embraced and empowered the chapter’s team to achieve its goals. “To accomplish everything we had in front of us, we had to commit to being an innovative work culture that empowered, trusted and supported the needs of our team,” said Sullivan. “Then, we listened and involved our team on the path of revamping the way we looked at work – to make sure the decisions and changes made sense for everyone.” The National Multiple Sclerosis Society, Michigan Chapter changed traditional workplace policies and replaced them with a very team-centric approach that focused on flexibility. The new policies and culture revolve around a new flexible scheduling policy, telecommuting and part-time options that had not existed before. “I’m so proud of our organization for receiving these honors,” said Sullivan. “A lot of organizations talk about it, but our team took the leap of faith to make this a very special place to work. It takes creativity, courage, and trust to actually implement workplace changes that make a difference.”
Chairman: Michael Brady Chapter President: Elana Sullivan Editor: Sarah Borst Design: Graphinity, Inc. © 2015 National Multiple Sclerosis Society, Michigan 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.
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RESEARCH
TALKING ABOUT STEM CELLS: PART 2 The National Multiple Sclerosis Society recently sat down with Dr. Jeffrey Cohen, director of the Experimental Therapeutics Program at Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research to talk abut mesenchymal stem cells as a treatment for both progressive and relapsing forms of MS. At the Mellen Center since 1994, Dr. Cohen has been involved in various capacities in a large number of clinical trials developing new therapies for multiple sclerosis. Could you explain the procedure that you’re testing? The type of stem cells we are testing are called mesenchymal stem cells. These cells are present in many tissues of the body, and have been studied fairly extensively. In our study, the stem cells were extracted from the patients’ bone marrow, then grown in the lab to purify them and increase their numbers. They are then injected intravenously back into the patients. Why did you choose to look at mesenchymal stem cells? We chose to look at these cells because they have the potential to treat MS. First, the cells appear to have neuroprotective or tissue-
protective properties. Second, the cells may encourage natural repair mechanisms within the damaged tissue. Third, these cells have some immune-modulating properties. Finally, they appear to be able to move from the blood into tissues that are inflamed or damaged. This makes it more convenient to administer the cells. Research also suggests that we don’t have to inject the cells directly into the nervous system. Instead, we believe we can introduce them intravenously or through a spinal tap, and the cells will find their own way to the areas of damage. What are you expecting to learn from this study? The phase I study we just completed focused on the feasibility and safety of the procedure. The results were very encouraging; we didn’t encounter any practical issues or safety
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concerns, and there were very few side effects. We also took a preliminary look at benefit – both reported by patients themselves and clinical measures – and a range of advanced imaging and immunologic techniques in preparation for what we hope will be a larger study. Who was included in the trial? We enrolled 24 people with MS, approximately half with relapsing-remitting MS and half with secondary-progressive MS. Because this was a preliminary safety study, people on certain medications, such as immune-suppressing drugs, were excluded. We wanted to make sure that if someone had a complication, we knew whether it was due to the cell therapy or the medication. There is also concern that some disease-modifying therapies may interfere with the ability of mesenchymal cells to migrate to or to repair damage. Is there any advice or caution you would offer people who want to consider stem cell transplantation? I share in the excitement and interest in cell-based treatment for MS – it shows a lot of promise. I also appreciate that people are anxious to pursue those therapies now. We were pleased that the study went so smoothly, but it was apparent that there were a lot of issues related to stem cells, including uncertainties of how best to grow them, where to isolate and administer them, and the optimal dose. At this point I think it is premature to pursue cell-based therapies
outside of a carefully conducted, formal clinical trial. How does someone find such a trial? Both www.clinicaltrials.gov and the Society have a listing of ongoing studies—visit nationalMSsociety.org/clinicaltrials. The International Society for Cellular Therapy at celltherapysociety.org is another useful source of information on cell-based therapies. General questions people should ask are: What is the rationale for this particular cell therapy? What kind of experience do the investigators have? What is the plan to monitor for safety? I think a red flag would be if the plan is to have the cells administered and send you home with no follow-up. What makes you so excited about research in this area? It’s a large area of unmet need in MS and other conditions in which there is injury to tissue. The work that has been done so far has been very promising. I believe cell-based therapies are going to be a big part of medical practice in the future. The particular cells that we studied are the initial endeavor, but there are a number of other more advanced cell therapies being developed. I think there’s a good chance that in the future this is going to be how we treat a lot of diseases. n Originally published on MSconnection.org/ blog. Join the conversation about stem cell treatments at MSconnection.org.
6 PROGRAMS & SERVICES
UPCOMING EVENTS & INFORMATION Everyday Matters: Living Your Best Life with MS will be held on five Tuesday evenings, March 24 – April 21, in Southfield. This innovative program will help you increase your knowledge of the principles of positive psychology, gain an understanding how these principles can be used as a strategy for living with MS, and identify additional resources for support and connection. Look for a brochure in the mail after February 10 or call 800-344-4867 for more information and to register. MS Aquatics – Nine Saturday sessions held April 11 – June 13 (no session May 23), 9:50 a.m. to 10:40 a.m. at the Grand Traverse County Civic Center Pool. You may attend any number of sessions. There is a guided water exercise and swimming for persons with MS and a lift is available to assist with entry and exit from pool. Care partners are welcome to assist in the pool. Pre-registration is not required. Please call Kirsten Ardery, 231-947-6098 for more information. Family Getaway Weekend - April 25-26 Bavarian Inn Lodge, Frankenmuth This two day program will include educational presentations on: • Nutrition and MS – Darlene Brown, MS RD
MS CONNECTION: SPRING 2015
• Mobility, Spasticity, and Fatigue in MS – Suzanne Croll, RN BSN, MSCN • Journaling: Tracking Our Health, Feelings, and Hope – Melissa Seitz • Yoga – Natala Harvey • Cognition and Mood Changes – Albert Aniskiewicz, Ph.D. Fun activities for children ages 5-10 and a “Tweens and Teens” program will be held Saturday and led by Saginaw Valley State University graduate level Occupational Therapy and Health Science students. The cost for the program is $45.00 per family (up to four people) which includes lunch on Saturday and breakfast on Sunday (the program cost does not include the cost of lodging). Immediate family members only, please. Watch your mail for a brochure to arrive in March. Registration for this program will not be open until March. You will need to register for the program with the MS Society and also register for lodging through the Bavarian Inn Lodge. Registration ends on April 10 or when filled. There are limited openings so register early! Gateway to Wellness - A Six-Week Wellness Program Save the Date: April – May, Holland This program provides six sessions that focus on exercise, activities to promote wellness, self-management, and balance in lifestyle. Participants learn how to make informed decisions about lifestyle issues, medical care, exercises, and practice setting realistic goals. This program teaches the skills needed to
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balance work, play, family, and self-care activities while developing friendships with other participants. Cost: $25/per person. Participant workbook is included. Watch your mail for a program flyer on how to request an application. If you have questions or would like additional information please contact Christy.Bomba@nmss.org or call 989-249-1184. Live Each Day to the Fullest Saturday, May 2, 12:30 to 3:00 p.m., Alpine Lodge, Gaylord Join us to explore ideas to get the most from each day and achieve optional wellness. Registration opens in early April. Watch your mail for a flyer. How to Manage Sleep, Pain, Fatigue, and Spasticity will be held on Wednesday, May 6 in the evening in Ypsilanti. Connect with others who may be experiencing these symptoms and learn what might be done to manage them. Dr. Jennifer Doble is the presenter. A brochure will be mailed at the end of March. U.P. Spring Conference May 16 (Save the Date), Bay College, Escanaba Financial Assistance Program – A Helping Hand This program offers assistance in a wide variety of areas including, but not limited to: assistive technology such as computers, auto modifications including hand controls and vehicle lifts, incontinence supplies, grab bars for your bathroom, purchase and repair of medical equipment such as wheelchair or scooters,
medical transportation, and limited assistance for past due utilities and rent/mortgage. Please contact an MS Navigator at our Information and Resource Center at 800-344-4867, option 1 for more information.
MAKE YOUR VOICE HEARD ATTEND MS STATE ACTION DAY Relentless, a person with MS, passionate; who do all those words describe? You – and other MS State Action Day participants. Join us on Wednesday, April 22 at the Michigan Capitol in Lansing and be heard! You have a story to tell about living with MS that is important to share with state legislators. We need you to join us for the seventh annual MS State Action Day. Appointments will be arranged for you. All appointments are arranged in small groups so everyone has one or more partners for all meetings. Our meetings will build support for a tax incentive for home modifications and state funding for home care. Everyone receives training about the issues and meeting preparation via a toll free conference call. Transportation assistance will be available. Register by calling 800-344-4867 or via the calendar page at nationalmssociety.org/mig. Ask boldly for support of what is important for people with MS. It’s easy, it’s fun. Speak up NOW!
8 FUNDRAISING
MUCKFEST MS 2015 – SATURDAY, AUGUST 1 MuckFest MS is the fun mud and obstacle 5K for everyone. If you can laugh, you can do it. No special training required. Have a blast on mountains of mud and 15+ outrageous obstacles that will spin, swing, and fling you and your teammates up, down, and sideways. Children even get to join in the fun with a mucky, pint-sized play lot just for kids called the Lil’ Muckers. The “MS” part of MuckFest MS stands for multiple sclerosis and it’s a great opportunity to rally friends in support of people living with MS in our community. 100% of the pledges raised by you benefit the National Multiple Sclerosis Society. Join MuckFest MS and have a blast while being a part of something that matters. For more information or to register, please visit muckfestMS.org.
MS CONNECTION: SPRING 2015
Multiple Sclerosis Awareness Week March 2-8, 2015 Mark your calendars and get ready to move Michigan closer to a world free of MS during MS Awareness Week, March 2-8, 2015. This is a great time to join others across the state – and across the country – in spreading the word about multiple sclerosis and the needs of those affected by the disease. There are many ways to get involved, such as – sharing information on your Facebook page; wearing something orange and using it as a conversation starter; setting up an MS awareness station at your work/school; bringing an orange treat to work or school and using it as an opportunity to talk about MS Awareness; holding a fundraiser; registering for a Walk MS, Bike MS, or MuckFest MS event; organizing a ‘jeans’ day at your office/ school and raising funds for MS research, or eating macaroni and cheese all week! You get the picture – it’s all about awareness and sporting some orange! The opportunities are endless, and we would love for you to share your MS Awareness Week activities with us! Please share on our Facebook page, or email your pictures to Cheryl.Rothe@nmss.org.
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WALK MS DATES 2015: Please note, the 2015 Bloomfield Hills Walk MS has moved to Rochester to accommodate the increase in participants. April 25 – Midland • Lansing May 2 – Kalamazoo May 3 – Detroit May 9 – Frankenmuth • St. Clair May 16 – Grand Rapids • Wyandotte June 20 – Rochester (new location) • Dexter June 20 – Traverse City September 12 – Grand Haven September 13 – Milford • Marquette
BIKE MS DATES 2015: Please note, the 2015 Mid Michigan ride has a new start/finish location. June 6-7 – West Michigan, Holland July 11-12 – Mid Michigan, Highland (new start/finish at Milford High School) September 12 – Fall Breakaway, Brighton September 26-27 – Bavarian Breakaway, Frankenmuth
As many of you may recall in 2014 we changed MSAMS to Run MS. Well, hold onto your hats! We have one more change for 2015. Finish MS is a platform for anyone participating in a third-party race event including a marathon, fun run, triathalon, mud event, or other walks. Register with the third-party event of your choice, then visit nationalMSsociety.org/Chapters/MIG/ Fundraising-Events. Choose the Finish MS link and register with us. Once you’re registered you’ll have access to all of the National MS Society’s online fundraising tools.
TEE UP IN 2015 TO FIGHT MS! Golf MS is an opportunity for those who love the game of golf to help create a world free of MS. Anyone can make a tee time and play a round of golf (or two) from May through September and raise funds to fight MS while doing it. Our official partner golf courses provide two FREE rounds of golf for each Golf MS participant who raises a minimum of $100. Golf MS participants also have the choice of golfing at a non-partner course and raising funds. Registration opens April 1. For more information and to register, visit golfMSmi.org or call 248-936-0342.
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LIVING WITH MS
REACH OUT FOR HELP For Brian Thompson, symptoms of multiple sclerosis were something he ignored as long as he could. Between 2007 and 2009, he experienced two cases of optic neuritis, an inflammation that can cause complete or partial loss of vision. However, after treatment, he regained his vision completely. “So, I went far too long before getting a diagnosis,” the Burbank, Calif., resident says. Thompson’s symptoms slowly progressed over the next three years, and he started experiencing issues with balance, endurance, strength, and heat intolerance. “I was at a point where I could no longer disregard these symptoms,” he remembers. Shortly thereafter, he was diagnosed with MS. “What do I do now?” and “How will my life change?” are just a couple of the questions Thompson had after he received the news. However, at the MS Comprehensive Care Center at the Keck School of Medicine of University of Southern California, Thompson connected with an MS-certified care manager. “She has been an amazing resource,” he says. “She has helped me with everything from filling out paperwork to making sure I ask my neurologist the right questions.” When Thompson broke his leg after a fall and required in-patient care, the care manager connected him to a local rehabilitation facility and set him up with 72 hours of support for his recovery time at home. The extra support
BRIAN THOMPSON, DIAGNOSED WITH MS IN 2012 was a relief for Thompson and his girlfriend, Shelli. “Having the help took the burden off us. Sometimes MS becomes the third person in the room. It’s nice to not have to focus on it,” he says. n Originally published in the Southern California & Nevada MS Connection newsletter. The MS Navigator program can connect people like Brian Thompson to the information, resources and support they need. Call 1-800-344-4867 to: • Find MS specialty care—doctors, counselors, social workers, physical therapists and more • Get personalized answers about your unique needs, including up-to-date information, referrals and practical resources • Learn about research and clinical trials • Advocate for better health care, research funding, and policy initiatives that are important to you • Understand benefits such as health insurance
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PROGRAMS & SERVICES
CATCHING UP WITH AN INAUGURAL SCHOLAR After Rachel VandenBerg (formerly Veldman) from West Michigan applied for her scholarship in 2003, she became one of 36 inaugural recipients (out of 329 applicants) nationwide to receive a National Multiple Sclerosis Society Scholarship. According to her mother Julie, Rachel is doing exactly what she listed on her application. Dr. Rachel Vandenberg is now a physician in family practice and her mother couldn’t be more proud. Julie said back when Rachel was preparing to go to college, as a mother she was trying to figure out whether she should pay for her MS treatments or for her daughter’s education. Julie said the scholarship was needed by the family and really made a difference. After completing her undergraduate degree in Michigan, she attended medical school
in Missouri. She is now in her last year of residency, and will be joining a practice in northern Michigan upon her return. “Rachel has a heart for rural medicine and serving the underprivileged,” said her mom. “Rachel is doing everything a parent wants for her children. She’s a good human being, who is helping others.” We at the Michigan Chapter could not agree more. Way to go Rachel! After the Society established its scholarship program in 2003, it immediately became a source of great encouragement for families concerned that MS might put college out of reach. There are very few known sources of scholarship assistance specially targeted for these families. The Michigan Chapter is currently seeking to expand our scholarship program. If you are interested in helping us fund additional scholarships for deserving students like Rachel, please contact Tim Krause at 248-936-0347 or email him at Tim.Krause@nmss.org.
In 2014, 1,028 students Nationwide submitted scholarship applications, a clear demonstration of the need for this targeted financial assistance program. The Society was able to fund 460 of these new applicants and 258 renewals for a total of $1,142,675. The Society will begin reviewing the scholarship submissions for 2015 soon. We are honored to be able to offer this assistance to students affected by MS.
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VOLUNTEER SPOTLIGHT LORI CHAMPAGNE When did you start volunteering for the MS Society? I started around 2001-2002 in San Diego at the chapter there. I came to Michigan in 2013 and worked my first event at the Detroit walk. I have been involved here ever since. Why the National MS Society, Michigan Chapter? In 2001, something went screwy in my body and I had some numbness. It was not diagnosable as MS per my doctor as it was a single event. The numbness event had made an impression on me and I looked to the chapter in California closest to me for resources and help. It turned out over subsequent MRI testing that the lesion had healed. During that time, I got involved in taking pictures for them and volunteering at events and kind of stuck around. When I met my significant other and moved to Michigan I learned that his father has MS. I knew that I had to stay involved. What do you do during the week? I am excited to begin working with the SOUL Center when it opens and I am planning on spending my time teaching autistic people artistic trades and skills there. I am on the committee for the World Intellectual Property Day and prepping for our April 23 event. I am starting to prepare the MS warehouse for the upcoming season.
What are your hobbies? I love to engrave and teach people how to do various DIY projects such as vinyl cutting, lasering, sandblasting, powder coating, and Corel graphics at the Techshop Detroit. Sometimes, you can find me building sets and stage managing for the Birmingham Village Players. I have also built Jim Henson Muppet characters in the past, and worked for a Russian newspaper. I speak Russian, French, Hebrew, and American Sign Language. What is your favorite volunteer job so far? I am thrilled to take the lead with Laura James (Bike MS Event Experience Manager) at the Michigan Chapter’s warehouse in Royal Oak this spring working to get things prepared and packed before 14 Walk MS and 4 Bike MS events are upon us. What keeps you coming back? The Michigan Chapter just happened to be full of the nicest people. In moving here from across the country I was glad to have found a landing pad with a bunch of new friends. I am also constantly in awe of all the effort that the participants and staff put into the events. I just love being a part of it all. What would you say to someone thinking of volunteering with us? There are so many cool jobs that can be done here. Whether it is at an event in the sunshine or making calls in the office, just get out there and begin! If you are interested in volunteer opportunities, please contact Christopher Rowe at 248-936-0360 or email him at Christopher.Rowe@nmss.org.
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NARANJA NIGHTS – SATURDAY, MARCH 7 Christopher & Company, a local event production company, will be hosting their second annual dinner/dance. Their volunteer planning committee, made up of dedicated volunteers and businesses, brings you “Naranja Nights” to The Diamond Center inside The Suburban Collection in Novi from 6 p.m. to midnight. This evening of food, drinks, live entertainment featuring Dal Bouey, and a silent auction will benefit the National MS Society, Michigan Chapter. Admission is $100/person. Tables are set for 8 guests each and can be bought as such with RSVP signage or individually. Advanced reservations and payment are required. For more information please email naranjanights@gmail. com or call 248-668-9273, you may also visit the event’s website at naranjanights.org.
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Active Research Projects in Michigan “Type-I Interferon regulation of lymphoid chemokines in MS and EAE.” Developing an approach to predicting a person’s response to interferon beta therapy. Amanda Huber, Ph.D. • University of Michigan “Ubiquitin D/FAT10: A New Signal for Neuronal Responses to Neuroinflammation” Investigating a protein that plays a role in the development and survival of nerve cells, for clues to protecting these cells in MS. Joyce Benjamins, Ph.D. • Wayne State University “Preclinical evaluation of combination therapy using metformin with conventional MS therapies” Investigating, through preclinical testing, whether metformin, an oral treatment for diabetes, has potential for turning off immune attacks in MS. Shailendra Giri, Ph.D. • Henry Ford Health System “Investigating the trafficking behavior of encephalitogenic Th17 cells prior to entering the CNS in experimental autoimmune encephalomyelitis and multiple sclerosis” Understanding how immune system cells acquire the ability to damage nerve-insulating myelin in MS. Stephen Lalor, Ph.D. • University of Michigan “B Cell Secretory Factors and Neuronal and Oligodendroglial Toxicity” Studying toxic substances made by immune cells that may cause nervous system damage in MS. Robert Lisak, M.D. • Wayne State University
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LIVING WITH MS
RECOGNIZING ANXIETY BY JULIE STACHOWIAK, PHD
It is not often that I feel “lucky” as a person with multiple sclerosis. However, I do feel extremely fortunate to have never experienced a mood disorder as a symptom of my disease. For a very brief time when I was younger, I suffered periodic depression as a symptom of premenstrual syndrome, and that was enough to give me the tiniest glimpse into the enormity of a mood disorder. When I was diagnosed with MS and learned about the variety of symptoms that I could experience, my fear of depression and cognitive dysfunction far outweighed my fear of losing mobility. At the annual meeting of the Americas and European Committees for Treatment and Research in MS (ACTRIMS-ECTRIMS), I learned that more people with MS have an anxiety disorder than have depression. One study of 7,786 adults with MS showed that 54.1 percent had “excessive symptoms of anxiety,” while 46.9 percent had “excessive symptoms of depression.”
DR. JULIE STACHOWIAK
MORE PEOPLE WITH MS HAVE AN ANXIETY DISORDER THAN HAVE DEPRESSION. It turns out that the prevalence of anxiety disorders in people with MS is roughly three times the prevalence of these disorders in the general population. More specifically, statistics show that among people with MS: • 18.6 percent have general anxiety disorder at any time (vs. 5.1 percent of people in the general population) • 10 percent have panic disorder (vs. 3.5 percent in general population) • 8.6 percent have obsessive-compulsive disorder (OCD) (vs. 2.5 percent in the general population) • Social anxiety is also higher in people with MS than the general population. In addition, more women with relapsingremitting MS (RRMS) than men with RRMS
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are affected by anxiety disorders. People with secondary-progressive MS are more likely to have symptoms of anxiety than those with other disease types. Anxiety has received only a fraction of the attention that depression has received as a disorder overall. However, it has been shown that anxiety in combination with depression, rather than anxiety or depression alone, are associated with increased thoughts of selfharm and more social problems. Despite its high prevalence in people with MS, as well as the potential risks when anxiety is combined with depression, the treatment or management of anxiety in MS has not been specifically studied. In my opinion, this is a problem since MS symptoms can be made worse by the side effects of anti-anxiety drugs, which include: drowsiness and lack of energy, clumsiness, impaired thinking and memory loss, and slurred speech. Another challenging factor is the difficulty faced by neurologists when diagnosing this disorder in their patients. There are a couple of reasons for this. People who are newly diagnosed with MS often exhibit symptoms of anxiety that may be transitory as they adjust to their diagnosis. More challenging is the overlap of symptoms between anxiety and MS. It may be difficult to distinguish MS-based symptoms such as pain, tremors, swallowing problems, sexual dysfunction and weakness from some of the physical sensations caused by anxiety. However, a neurologist or primary care provider can help discuss with you the differences between the two.
15 What I would like to emphasize for anyone experiencing symptoms of an anxiety disorder or depression is to know that it is not your fault. If you are feeling any of the symptoms of these mood disorders, please seek professional help from a mental health professional who has experience treating people with MS. Note: One very specific form of anxiety that was mentioned in the session was injection phobia, brought about when people have anxiety around self-injecting their MS diseasemodifying therapies. There has been some success in alleviating this using cognitive behavioral therapy. It is important to address injection phobia as soon as possible, as this reluctance to self-inject can lead to problems with adherence. â– Julie Stachowiak, PhD, is an epidemiologist, author of The Multiple Sclerosis Manifesto, and a person living with MS. Originally published at MSconnection.org/blog.
If you suspect you are experiencing depression, anxiety or other mental health issues, call an MS Navigator at 1-800-344-4867 to connect with a mental health professional in your area. To learn more about depression or cognitive changes associated with MS and ways to manage those symptoms, visit nationalMSsociety.org/ depression and nationalMSsociety. org/cognition.
21311 Civic Center Dr. Southfield, MI 48076
The one-of-a-kind 2015 Mustang 50 Years Convertible that was raffled off last year to benefit the National MS Society was built at the Ford Flat Rock Plant on December 11, 2014. The raffle winner, Christopher Oberski, was there with his family to watch as his special car was built and he even got to ride in it as it rolled off the assembly line. The Ford4MS Mustang Raffle raised over $600,000 for the National MS Society and the NOW MS Research campaign in 2014. Thank you to our friends at Ford Motor Company for their support and for this amazing, once-in-a-lifetime opportunity!
PHOTO CREDIT: PAUL STOLOFF PHOTOGRAPHY
FORD4MS MUSTANG RAFFLE CAR BUILT AT FLAT ROCK PLANT
RAFFLE WINNER CHRIS OBERSKI AND HIS WIFE, BRIDGETTE AT THE FORD FLAT ROCK PLANT THE DAY THE CAR WAS BUILT.