MS Connection, Fall 2016 by National MS Society, CT Chapter

THIS ISSUE:

Exercise & MS Page 13

CONNECTION

2016 MS Scholarship Awards

INVESTING IN THE FUTURE FA L L 2 0 1 6

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PRESIDENT'S MESSAGE

NATIONAL MULTIPLE SCLEROSIS SOCIETY CONNECTICUT CHAPTER T EL: 860.913.2550 1.800.FIGHT MS (344.4867) FAX: 860.761.2466 www.ctfightsMS.org www.nationalmssociety.org

John W. “Jack” Betkoski, III Chairperson, Board of Trustees

Lisa Gerrol President 860.913.2550, ext. 52531

COMMUNICATIONS

Cynthia Bidorini Associate Vice President

860.913.2550, ext. 52530

DEVELOPMENT

Kara Preston Vice President 860.913.2550, ext. 52533

PROGRAMS, SERVICES & ADVOCACY

Lynette J. Coleman Vice President 860.913.2550, ext. 52538

EDITOR IN CHIEF

Jacqueline Sembor

GRAPHIC DESIGN

Hal Wood

SPECIAL THANKS

CALL TO ACTION Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis (MS). The National Multiple Sclerosis Society’s medical advisors recommend that people with MS talk with their health care professional about using one of these medications and about strategies and effective treatments to manage symptoms. The National Multiple Sclerosis Society is committed to ensuring that people with MS have the information and quality care that they need to live healthy, productive and independent lives. If you or someone you know has MS, please contact the National Multiple Sclerosis Society today at nationalMSsociety.org or 1.800. FIGHT MS to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

CONNECTION

Courage and Strength in MS

veryday throughout my 20-plus year career leading the National Multiple Sclerosis Society, Connecticut Chapter, I have witnessed the impact multiple sclerosis has had, not only on the individuals diagnosed with the disease, but on their families as well. Husbands and wives, sons and daughters, loved ones and friends face a myriad of emotions and questions – all trying to make sense of the disease and understand how to best move their lives forward. What I’ve seen, time and again, is courage and strength as families come together to fight MS. In this edition of MS Connection, you’ll have the opportunity to take a glimpse into the lives of this year’s scholarship recipients and learn how multiple sclerosis has shaped their lives as well as their families. I encourage you to read each student’s message and you’ll quickly see a theme of inspiration and hope. Multiple sclerosis has taught these students compassion. It has ignited a passion and drive to help others and to make the world a better place. It has taught them the Lisa Gerrol importance of family. Take Madison Greenstein, one of this year’s scholarship recipients, for example. She openly shared in her essay how her mother’s diagnosis of multiple sclerosis has changed the course of her life. “After my mother was diagnosed, I distinctly remember making the transition from childhood to adulthood. Although I may have had more responsibilities for someone my age, my mother’s diagnosis of MS has taught me to be independent, dependable and self-sufficient. Dealing with MS has taught my family and me strength and perseverance. I’ve learned to live each day like it is your last and to not let anything hold you back from living your life.” There are thousands of stories like Madison’s and those of our other scholarship recipients, which illustrate the deep impact that multiple sclerosis can have on a family. While MS poses additional challenges, it can also enrich relationships and bring people closer together. The National MS Society offers an extensive variety of programs, services and resources for people living with MS, including family members, care partners and others in your support system. You can access these resources in person, on our website at ctfightsMS.org or by calling 1.800.344.4867. I, along with the entire staff at the Connecticut Chapter, am fueled by your stories of determination and strength. Please continue to share them with us as we take this journey together to fight MS.

Lisa Gerrol President

2016 MS SCHOL AR SHIPS

Investing In The Future Connecticut Chapter Awards A Record 42 College Scholarships

he National MS Society, Jennifer Hawke-Petit was diagnosed Hayley's Hope Connecticut Chapter’s & Michaela's Miracle with MS in 1999, their eldest daughscholarship program had MS Memorial Fund ter, Hayley, formed the Hayley’s Hope humble beginnings, awarding Walk MS team at age nine. She raised one scholarship 12 years ago to more than $55,000 over eight years a graduating high school senior. Over the past decade, and her sister Michaela was to follow in her footsteps. the program has blossomed into a night of recognizing The Hayley’s Hope and Michaela’s Miracle MS more than 40 students for their accomplishments and Memorial Fund is the continuation of the family’s awarding promising minds college scholarships to help dedication to help those affected by this disease. The achieve their goals of attaining a higher education. These fund, started by the Petit family in July 2007, continues ambitious, gifted students are potentially bringing us one the work of the three Petit women, providing family step closer to a world free of multiple sclerosis. support for more than 6,500 Connecticut residents and The Connecticut Chapter hosted the 2016 Hayley’s their families living with multiple sclerosis. Hope and Michaela’s Miracle MS Memorial Fund Since the fund’s inception, it has provided necessary Scholarship Reception Thursday, June 9, 2016, at the and crucial funding for family programs for people Hartford Golf Club. There, families, Society staff and throughout Connecticut who are battling MS, includdonors celebrated and recognized the tremendous ing community programs, caregiver programs and accomplishments of an impressive group of students. scholarships. Since 2008, 113 scholarships have been “These are already proven leaders in their schools, funded through the Hayley’s Hope and Michaela’s communities, families and in the National MS SoMiracle MS Memorial Fund. ciety,” said Lisa Gerrol, President of the Connecticut Student applications were reviewed on a national Chapter, during the reception. level and then selected by the Hayley’s Hope and MiIncluding the 42 scholarships awarded in 2016, the chaela’s Miracle MS Memorial Fund committee, made Chapter has provided $181,400 to 156 students since up of Dr. William Petit, Jr., Chairman; Jack Betkoski, the beginning of the program. Of the 42 students National MS Society, Connecticut Chapter, Board receiving awards this year, 27 were selected to receive Chairman; Lisa Gerrol, Chapter President; and Ron scholarships funded by the Chapter’s Hayley’s Hope Bucchi and Jim Wasz, fund committee members. and Michaela’s Miracle MS Memorial Fund. Generous board members stepped forward to fund Dr. William Petit, Jr. and his family have been 14 additional scholarships. longtime supporters of the Connecticut Chapter. When Three Monteiro Family Scholarships were made

2016 MS SCHOL AR SHIPS possible through the generous support of National MS Society, Connecticut Chapter board member Frank Monteiro, and two MacDermid Scholarships were funded through Monteiro’s employer MacDermid, located in Waterbury. Two students received Michael & Nancy Cummings Scholarships, and two received Joyce & Peter Wade scholarships. Other scholarships include the Betkoski Family Scholarship, the Steve & Cyra Borsy Scholarship, the David & Julie Carter Scholarship, and the Mark Ojakian and Jason Veretto Scholarship. One final scholarship was funded by the Jo-Ann Concilio Memorial Fund. The fund was established in 2011 by her daughter, Deana Concilio-Lenz, and son, Todd Concilio, as a tribute to their mother, Jo-Ann, a lifelong resident of Connecticut. Jo-Ann passed away in 2010, after living with multiple sclerosis for more than 20 years. “The National MS Society continues to fund these scholarships because these are students we believe in,” said Gerrol. “We’ve seen the challenges these students have faced and yet they still seize opportunities to go forward. The chapter’s scholarship program is one more way that the National MS Society supports local families.” Of the 42 scholarships awarded this year, 10 were given to returning applicants who continued to demonstrate a commitment to the comunity while excelling in college. “We are investing in you,” said Gerrol. “All we ask is that you pay it forward in the future. In your career or as volunteers – you have the potential to change lives.” When the Society established its scholarship program for students who have MS or a parent living with MS it immediately became a source of great encouragement for families concerned that MS might put college out of reach. In 2016, more than $1.1 million in National MS Society Scholarships were awarded to 815 recipients from across the country. Scholarships range from $1,000 to $3,000 and recipients are eligible to reapply each year to be considered for a future award. The program is competitive; awards are not guaranteed. “There are very few known sources of scholarship assistance specially targeted for these families,” said Gerrol. “MS shouldn’t stand in the way of an education, and we are hopeful this program will give families some relief.” Scholarship applications for the 20172018 school year will be available online in October. For more information on MS or for additional information on 2016 MS scholarship criteria, please contact the Connecticut Chapter at 860.913.2550 or visit ctfightsMS.org.

Jiana Baker HOMETOWN: Windsor GRADUATED FROM: Windsor High School PLANS TO ATTEND: University of Connecticut MAJOR: Biology “Watching my father transition from using a cane to a walker and eventually a wheelchair sparked a fire within me,” said Jiana. “And when my biology teacher explained MS as a hopeless disease, my curiosity regarding medicine and MS was once again piqued. I want to make a lasting impact on the lives of others for the better, and I think I can do that with a career as a chemical engineer.”

Devon Barker HOMETOWN: Norwalk GRADUATED FROM: Norwalk High School PLANS TO ATTEND: University of Connecticut MAJOR: Business “I was an active 5-year-old when my mother was diagnosed with MS,” said Devon. “She tried hard to keep my childhood normal, but she was so tired and we couldn’t play much outside once it got hot in the summer. Pain is not something you can see, but you can imagine it when you see someone struggling to get up the stairs. I wish I could make MS disappear, and hopefully someday it will.”

Julian Bodnar HOMETOWN: Suffield GRADUATED FROM: Valley Forge Military Academy PLANS TO ATTEND: University of Connecticut MAJOR: Economics and Finance “When I was 14, my dad told me that one day, I’ll be forced to ask myself ‘How have I changed the world, and how will I be remembered?’” wrote Julian. “I’ve found my purpose in fighting for my mother, who was diagnosed with MS when I was five. I participate in Bike MS, and have pushed myself from riding 25 to 100 miles. I raise money and awareness for MS, which are the first imprints of my lasting impact on the world.”

Chardia Campbell HOMETOWN: Hartford GRADUATED FROM:Bulkeley High School CURRENTLY ATTENDS: University of Connecticut MAJOR: Neurobiology “My goal is to go to medical school and get my doctorate in neurobiology,” shared Chardia. “I believe neurobiology is the best way to understand many people and illnesses. When my mother was diagnosed with MS, it made me want to accomplish this goal even more. I want to be able to take care of her and my family because they have done so much to take care of me.”

2016 MS SCHOL AR SHIPS

Aneurin Canham-Clyne

Veronica Dinneen

HOMETOWN: New Haven GRADUATED FROM: Wilbur Cross High School CURRENTLY ATTENDS: Tufts University MAJOR: History “When my mother was diagnosed with multiple sclerosis, she missed work and my brother and I missed the sense of her unshakeable reality,” wrote Aneurin. “I took on many of the basic responsibilities in my household while trying to hold my family together. MS haunts our family like a ghost. While I know MS isn’t directly inheritable, I still jump at muscle spasms and nerve pains and watch vigilantly for the onslaught of the disease.”

HOMETOWN:Griswold GRADUATED FROM: Griswold High School PLANS TO ATTEND: University of Rhode Island MAJOR: Nursing “When I was in the second grade and my dad tried to explain his MS, the only thing that made sense to me was the numb feeling,” said Veronica. “I used to poke his legs and ask if he could feel it. But since then I’ve studied a lot about MS. Watching my father battle MS has inspired me to become a nurse and help make difficult and sometimes scary journeys easier.”

Daniel Cellini

Joseph Dunn

HOMETOWN:Easton GRADUATED FROM:Joel Barlow High School PLANS TO ATTEND: Western Connecticut State University MAJOR: Criminal Justice “My mother has had a debilitating form of MS since I was born, and is now a quadriplegic,” wrote Daniel. “She couldn’t attend my sporting events, school programs or social gatherings. It made me sad that she couldn’t participate in my life and even more sad that she couldn’t participate in her own. I am determined to live a full life and be supportive of my mother as she gets older. I want her MS to have a positive effect on who I become.”

HOMETOWN: Simsbury GRADUATED FROM: Simsbury High School CURRENTLY ATTENDS: University of Connecticut MAJOR: Finance “My mother was diagnosed with MS before I was born, and growing up I didn’t understand why she dropped so many things,” said Joseph. “But when my father explained to me what MS was and how it affected her, I wanted to help. My father created the Joanne’s Journey Walk MS team, and I created my own team, DeFeet MS. I want to be a part of finding a cure for MS.”

Hannah Comparone

Madison Greenstein

HOMETOWN: Southington GRADUATED FROM:Southington High School PLANS TO ATTEND: Western Connecticut State University MAJOR: Nursing “Becoming a nurse is not just a goal for me – it is a dream,” said Hannah. “Before my mother was diagnosed, she was a hero in my eyes because of the work she did as a nurse. That inspired me to follow in her footsteps of saving lives. Her inability to work any longer because of her disease has only added to my drive. I believe I was brought into this world to help people.”

HOMETOWN: Wolcott GRADUATED FROM:Wolcott High School PLANS TO ATTEND:Central Connecticut State University MAJOR: Secondary Education “I was ready for the summer of 2010 to be filled with camping trips, swimming and adventuring with my friends, but it quickly became filled with doctor’s appointments, chores and watching my mother struggle with a new diagnosis of multiple sclerosis,” said Madison. “I learned to adapt and fill-in where needed. Our family has learned strength and perseverance. I have learned the confidence I need to face life’s challenges and make every day count.”

Brianna Comtois

Sarah Hart

HOMETOWN: Danielson GRADUATED FROM: Killingly High School PLANS TO ATTEND:Johnson & Wales University MAJOR: Culinary Arts “My mother’s dream was to open her own catering company – which she realized only a couple of years before she was diagnosed with MS,” said Brianna. “MS has brought our family closer together. I have worked side by side with my mother, helping her run her business. Once I earn my degree, I want to open a joint catering business and continue chasing our dreams together.”

HOMETOWN:Glastonbury GRADUATED FROM: Glastonbury High School CURRENTLY ATTENDS: Franklin Pierce University MAJOR: Health Care Administration “My mother’s MS has taught me that many things can happen to anyone at any time,” said Sarah. “It’s the way you handle yourself and your attitude that can make a difference in your life. I love my mom and I love how she handles her MS – she even changed her ‘MS’ to mean ‘many saints.’ She lives her life in a positive way and I will do the same.”

2016 MS SCHOL AR SHIPS Jamie Kasiewicz

Jennifer Neri

HOMETOWN: Trumbull GRADUATED FROM:Trumbull High School PLANS TO ATTEND: University of Connecticut MAJOR: Pharmacy “My dream is to participate in a six-year accelerated PharmD program or a four-year pharmacology program so that I can one day ease the pain that I have witnessed in my role model, my mother, while also passing on the comfort of knowing that loved ones are not helpless in the fight against MS and other diseases,” wrote Jamie.

HOMETOWN: South Windsor GRADUATED FROM: South Windsor High School CURRENTLY ATTENDS: Husson University MAJOR: Physical Therapy “I was diagnosed with MS in June of 2015, when I was 20 years old,” said Jennifer. “My struggles with pain, learning to give myself shots three times a week, and going through chemotherapy four times a year take a toll on me on top of studying for my college classes. I will not let MS take my spirit, I am now a stronger and more confident individual since my diagnosis. I know there is hope for my future."

Collin Kuchachik

Julia Pangallo

HOMETOWN:Orange GRADUATED FROM: Amity Regional PLANS TO ATTEND: Stonehill College MAJOR: Criminology “My father’s progressive MS has forced me to grow up faster and take on more responsibility than most of my peers,” said Collin. “Instead of letting our circumstances get the best of me, I used them to make me a stronger, more disciplined person. I am better prepared for the challenges I may face and have a strong spirit and work ethic to drive me forward.”

HOMETOWN: Fairfield GRADUATED FROM:Fairfield Ludlowe High School PLANS TO ATTEND: University of Connecticut MAJOR: Undecided “My dad’s MS kept him from playing sports and running around with my sister and me when we were younger,” said Julia. “But, he didn’t tell us until recently that he is living with MS, because he didn’t want us to worry. Now that I am aware of what MS is, I appreciate everything he did for me even more. I want to use my college career to learn more about how MS affects people and what can be done to reverse the damage it causes.”

Sara Near

Parker Plumley

HOMETOWN: Stonington GRADUATED FROM:Stonington High School PLANS TO ATTEND: Amherst College MAJOR: Neuroscience “For as long as I can remember, I have watched my mom fight an unpredictable disease,” said Sara. “She has suffered, but she has never failed to fight. She has achieved great success in spite of her illness, both in her career and as a mom. I know that this same sense of courage and fortitude that my mom has nurtured in me will always be my greatest asset.”

HOMETOWN: Farmington GRADUATED FROM: Farmington High School PLANS TO ATTEND: Jacksonville University MAJOR: Airport Management “When my mother was diagnosed with MS in 2006, I was still very young and did not understand the severity of her disease,” said Parker. “I quickly realized that I needed to step up more at home because she couldn’t do everything on her own like she used to. The next year, we started the Walk MS team Legs For Lori and have kept at it every year since.”

Brooke Neller

Jane Pollard

HOMETOWN: Litchfield GRADUATED FROM: Wamogo Regional High School PLANS TO ATTEND: Salve Regina University MAJOR: Nursing “My mother is my inspiration,” wrote Brooke. “She is always misleadingly silent about the amount of pain she is in and never complains about her MS. I admire her strong-willed attitude to fight back as she attends physical therapy to help keep her strong. Her inability to participate in demanding physical activity has given me the drive to do what she cannot.”

HOMETOWN: Fairfield GRADUATED FROM: Academy of Our Lady Of Mercy, Lauralton Hall PLANS TO ATTEND: University of Dayton MAJOR: Finance “My mother was diagnosed with MS when I was an infant, and it wasn’t until I got older that I could understand what my mom was experiencing,” said Jane. “Since her diagnosis, our family has participated in Walk MS annually. No matter where we lived – Illinois, Georgia or Connecticut – we never missed a Walk. Being involved with the Society has shown me all the support that there is for individuals with MS and their family.”

2016 MS SCHOL AR SHIPS Helena Reznikoff HOMETOWN: Newtown GRADUATED FROM: Newtown High School CURRENTLY ATTENDS: Western Connecticut State University MAJOR: Graphic Design “One of the many changes my MS has left me with is an altered visual perception” explained Helena. “I would like to use this perspective creatively by pursuing a BFA in Graphic Design at Western Connecticut State University. Although MS has taken so much away, it has also given me the resilience to meet everyday challenges and I am grateful for how much it has helped me grow.”

HOMETOWN: North Branford GRADUATED FROM:North Branford High School PLANS TO ATTEND: University of Connecticut MAJOR: Undecided “When I was told at the age of eight that my mother had MS, I thought nothing of it – she was invincible,” said Ashley. “But it was through the repetition of the same nasty symptoms that MS started to become all too real. I learned that having a mother with MS can be a struggle, but I wouldn’t have it any other way. Through it all, I have been right beside my mom.”

Connor Rodriguez

Nicole Swartz

HOMETOWN: Shelton GRADUATED FROM:Saint Joseph High School PLANS TO ATTEND: Northeastern University MAJOR: Engineering “I remember attending Walk MS events as a young child, but I did not fully understand what they were all about – everyone looked fine to me with the exception of a few people using wheelchairs,” said Connor. “But as I got older, I learned more and appreciated these walks with my family more with each passing year. I want to one day be able to provide my family with anything they need.”

HOMETOWN: West Hartford GRADUATED FROM: Conard High School CURRENTLY ATTENDS: University of New Hampshire MAJOR: Astrophysics “I was in the second grade when my dad was diagnosed with MS,” said Nicole. “I didn’t understand what was happening to him and I was frightened because I couldn’t help. But as I got older, I gained a better understanding and began to accept who my dad is and what his MS is. He is still able to enjoy life, and that is one of the biggest lessons a parent can teach a child.”

Taylor Rumm

Matthew Swartz

HOMETOWN: Old Lyme GRADUATED FROM: Lyme Old Lyme High School PLANS TO ATTEND: The New School MAJOR: Communication “Four years ago, my mom was diagnosed with MS,” said Taylor. “Although she usually does not feel well, we continue to do the same activities together now that we did before her diagnosis. It means the world to me that she doesn’t let the disease get in her way. This quality inspires me to be the best person I can be and continually strive do to the things I love.”

Sapir Shoshan HOMETOWN: Fairfield GRADUATED FROM: Fairfield Warde High School CURRENTLY ATTENDS: University of Richmond MAJOR: Mathematics “Having a mother with multiple sclerosis isn’t only difficult for her, but for the family as well,” said Sapir. “MS is an obstacle that was thrown our way many years ago and has had a huge impact on my life. But all in all, it has helped me mature as a person and realize how truly admirable my mother is throughout her domination of this disease.”

Ashley Stephens

HOMETOWN: West Hartford GRADUATED FROM: Conard High School PLANS TO ATTEND: Pennsylvania College of Technology MAJOR: Manufacturing “My dad usually tries to act like there’s no problem and everything’s alright,” wrote Matthew. “The thing is, I can sort of relate to some of his problems, like having a disability and being made fun of sometimes, and appearing like there is no problem at all. Disabilities like MS and my autism aren’t easy to see. Because of my dad’s MS, I have more respect for other people with disabilities like him.”

Amanda Thompson HOMETOWN: Clinton GRADUATED FROM: Morgan High School PLANS TO ATTEND: University of Wisconsin - Madison MAJOR: Computer Science “As an only child, I used to hate not having siblings to play with, but my mother’s MS progressed after I was born, so her doctors recommended that I be the only one,” said Amanda. “Now my mother tells me that I am her greatest gift. To make her proud, I’ve pushed to excel and take on leadership roles to become an active member of my community.”

2016 MS SCHOL AR SHIPS Brianna Tribble-Bryant

Cara Walsh

HOMETOWN: Hartford GRADUATED FROM: Metropolitan Learning Center PLANS TO ATTEND: University of Hartford MAJOR: Early Childhood Education “Living with MS has really changed my perspective on life,” said Brianna. “Yes, it holds me back a lot, and has left me feeling lonely when my peers don’t understand what I’m going through, but it’s when my mother gives me the encouragement I need and my true friends stick by me and don’t let me give up that I realize how strong I can be.”

HOMETOWN: Cheshire GRADUATED FROM: Sacred Heart Academy PLANS TO ATTEND: Fairfield University MAJOR:Nursing “I do not know a life without MS,” said Cara. “I have watched MS take over my mother’s body, changing our lives. Sometimes having MS makes my mom feel embarrassed, but I am not at all embarrassed to have a mother living with MS. I am proud. She is a living example of absolute strength, determination and hope. I am blessed to have her as my mom.”

Kelly Vino

Edward Wenzel

HOMETOWN: Fairfield GRADUATED FROM: Fairfield Ludlowe High School PLANS TO ATTEND: Palm Beach Atlantic University MAJOR: Nursing “My family has participated in Walk MS since I was a toddler, and I remember my mom staying at the beach while we did the route without her,” said Kelly. “I understand now why she couldn’t come with us. I also understand how hard it must have been when I begged her to come play with me. My parents have taught me that setbacks do not limit you, but rather empower you to do better every day.”

HOMETOWN: North Haven GRADUATED FROM: North Haven High School PLANS TO ATTEND:Fairfield University MAJOR: Environmental Sciences “All I have wanted to do since my mother was diagnosed is help her as much as possible,” said Edward. “She works hard, but she gets run down which only lets her MS grow in intensity. I work hard and strive to be financially independent to help relieve some of the burden. In school, I realized I can use my academic ability to make paying for college a lot easier. I hope my hard work continues to pay off in college.”

RENEWALS David Anastasio

Christina Loya

HOMETOWN:Newington GRADUATED FROM: Newington High School CURRENTLY ATTENDS: University of Connecticut MAJOR: Allied Health

HOMETOWN: Roxbury GRADUATED FROM: Canterbury High School CURRENTLY ATTENDS: Stetson University MAJOR: Integrative Health Science

Rachel Beauregard

Jonathan Markovics

HOMETOWN: Avon GRADUATED FROM: Classical Magnet School CURRENTLY ATTENDS: Hofstra University MAJOR: Music- Viola Performance

HOMETOWN:Clinton GRADUATED FROM: The Morgan School CURRENTLY ATTENDS: University of Connecticut-Avery Point MAJOR: American Studies

Victoria Covino

Olivia Perreault

HOMETOWN: Stamford GRADUATED FROM: Stamford High School CURRENTLY ATTENDS::University of Connecticut

HOMETOWN: Cheshire GRADUATED FROM: Cheshire High School CURRENTLY ATTENDS: University of Rhode Island MAJOR: Journalism

MAJOR:Child-Life

Jill Durso HOMETOWN: Cheshire GRADUATED FROM: Cheshire High School CURRENTLY ATTENDS: University Of Connecticut MAJOR: Physiology and Neurobiology

Emily Hill HOMETOWN: Willimantic GRADUATED FROM: Edwin O. Smith High School CURRENTLY ATTENDS: Eastern Connecticut State University MAJOR: Education and English

Arian Silas HOMETOWN: Berlin GRADUATED FROM: Berlin High School CURRENTLY ATTENDS: University of Connecticut MAJOR: Physiology and Neurobiology

Timothy Vino HOMETOWN: Fairfield GRADUATED FROM: Fairfield Ludlowe High School CURRENTLY ATTENDS: Embry-Riddle Aeronautical University MAJOR: Unmanned Aircraft Systems

An MS Research Revolution

RESEARCH ROUND-UP: AUGUST 2016 STOP

RESTORE

Oral Allergy Medication May Stimulate Myelin Repair A small, Phase II clinical trial led by Ari Green, M.D., at the University of California suggests that the oral antihistamine clemastine could promote the brain’s ability to repair myelin. Researchers administered clemastine or an inactive placebo twice daily for 150 days to 50 people with multiple sclerosis who had optic nerve damage. The team measured the speed of nerve transmission in the optic nerve as an indicator that myelin repair occurred. Results suggested that nerve signaling speed increased in participants who were taking clemastine. Of particular note, the dose of clemastine given to participants exceeded the maximum recommended dose. Participants experienced side effects, including fatigue. Additional research will be needed to understand the potential benefits of this approach for treating MS.

Computer-Based Rehab Shows Promise With Improving Cognition Two separate studies utilizing computer-based therapies have shown cognitive improvement in multiple sclerosis patients. Leigh Charvet, Ph.D., along with colleagues from New York University and the State University of New York at Stony Brook, tested a computer-based cognitive training program in 135 people with MS. Of this group, 71 people used the training program – a series of brain-training games that are continuously adapted to keep the individual challenged – and 64 played regular video games for one hour a day, five days a week, for 12 weeks. Although the “placebo” video game group logged more playing time, those in the training group showed significantly greater improvement in cognitive function, as shown by a number of neuropsychological tests. Further testing may result in the availability of brain games for improving cognition in MS. A second study led by Pietro Iaffaldano, M.D., of the University of Bari Aldo Moro, Italy, tested computer-based 8

END

rehab for improving cognition in children. Iaffaldano and his team administered attention-specific computerized training or unspecified computerized training to 16 children with MS and 20 children with ADHD. The attention-specific training improved attention in both groups and improved processing speed and memory in the children with MS.

Mitoxantrone Use May Result In Increased Rates of Leukemia and Colorectal Cancer In a study published online in Neurology (May, 2016), a team of German researchers presented findings that suggest multiple sclerosis patients treated with the MS therapy mitoxantrone have a greater likelihood of developing acute myeloid leukemia and colorectal cancer than the general population. Mitoxantrone, an immune-suppressing therapy, is used to suppress the activity of immune T cells, B cells and macrophages thought to attack nerve-insulating myelin. Mathias Buttmann, M.D., of the University of Würzburg, Germany, and his team worked with 676 people with MS seen at the University between January 1994 and December 2007 who had received mitoxantrone. Results showed that 37 patients developed cancer after taking mitoxantrone, including nine cases of breast cancer, seven cases of colorectal cancer and four cases of acute myeloid leukemia. The rate of acute myeloid leukemia was 10 times that seen in the general population in Germany. The rate of breast and other cancers was not increased over that seen in the general population. Older age at treatment was associated with increased risk of cancer, but not prior use of other immunosuppressive treatments or duration of treatment with mitoxantrone. Researchers stated that a “post-treatment colonoscopy might improve the risk-benefit ratio of this highly active immunosuppressive drug,” since if found early enough, colorectal cancer is curable. They also noted that mitoxantrone is currently the only MS therapy approved for treating

secondary progressive MS, and that the overall rate of cancers may still justify the use of mitoxantrone in people who are severely affected with MS and where there are no better treatment options available.

Diet And Gut Bacteria Can Suppress Inflammation In Mice With MS-Like Disease An international team led by researchers at Brigham and Women’s Hospital in Boston have found that diet and bacteria in the gut can act to suppress inflammation in the brain of mice with an MS-like disease, EAE, with evidence showing that similar results may be possible in people with multiple sclerosis. Researchers first analyzed the genes involved in instructing astrocytes, cells that help to support the brain’s structure, especially in EAE in mice. The findings indicate that immune messenger proteins known as interferons provide signals to astrocytes and that these signals limit immune system activity in the brain during disease. They found, in particular, that these signals are mediated through a molecule known as the aryl hydrocarbon receptor (AHR). Previous research has indicated that AHR is activated by commensal bacteria. With this in mind, the team administered supplements which contained these bacteria to mice with the MS-like disease. The gut bacteria stimulated AHR activity, which then modulated interferon signals to astrocytes. Inflammation in the brain was reduced, along with disease activity. Senior author Francisco Quintana, Ph.D., was funded in this work by the National MS Society and the International Progressive MS Alliance among other funders. According to Quintana, “What we eat influences the ability of bacteria in our gut to produce small molecules, some of which are capable of traveling all the way to the brain. This opens up an area that’s largely been unknown until now: how the gut controls brain inflammation.” The National MS Society pursues all promising paths to uncover solutions for everyone with MS, wherever those opportunities may exist. For more information on these and other research advancements, go to nationalMSsociety.org.

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MS Brain Symposium

Bridging The Gap

he Joyce D. and Andrew J. Mandell Center for Comprehensive Multiple Sclerosis Care and Neuroscience Research is proud to sponsor the 2016 International Symposium: The Multiple Sclerosis Brain – Bridging the Gap to be held this October in Hartford. This uniquely broad symposium will feature high-level presentations and panel discussions by prominent leaders in the field of MS research and clinical care and will cover topics as diverse as the symptoms of MS. “The inspiration for the very diverse compilation of presenters and topics was actually the Mandell Center itself,” said conference chair, Albert Lo, M.D., Ph.D., Director of Neuroscience at the Mandell MS Center. “I wanted a onestop shop symposium that brought together the brightest minds across a variety of disciplines – all to talk about MS. Could there be a symposium that talked about stateof-the-art MS treatment, comprehensive care and research that brought together all relevant stakeholders, including investigators, clinicians, researchers, patients and their families? It turns out, there could.” This year, the goal of the scheduled presentations is to highlight advances in MS research and how these advances can bridge the gap to clinical care for people living with multiple sclerosis. Friday's activities will feature presentations for a clinician and research audience. Saturday will feature topics of interest for research and clinical professionals as well as individuals living with MS and their families. Saturday’s luncheon will also feature a guest presentation by Lydia Emily Archibald, artist and MS Advocate first introduced to many Society constituents through her design of the ‘End MS Forever’ banner displayed at all Walk MS events. These banners were signed by attendees and gave participants a chance to make their mark against MS. The National MS Society, Connecticut Chapter, is a sponsoring partner of the symposium. The Society will have a vendor table on-site Saturday afternoon with information and staff available to answer questions. Admission for Saturday's events is just $25. Visit stfranciscare.org/symposium2016 for more information on the symposium, a complete list of speakers or to purchase tickets. Or you may email info@mandellcenter.com or call 860.714.2947.

Symposium Agenda Saturday, October 29, 2016 7:30 a.m. Registration 8:30 a.m. Breakfast Presentations, Q&A 9:45 a.m. Welcome and Opening Remarks, Peter Wade, M.D. 9:50 a.m. Overview of Diet and Nutrition in MS, Denise M. Nowack, RDN 10:15 a.m. BREAK 10:30 a.m. Complementary and Alternative Medicine (CAM) and MS, two half-hour presentations 11:30 a.m. Role of Exercise on Cognition, John DeLuca, Ph.D. 12:15 p.m. Luncheon, Guest Presenter Lydia Emily Archibald, Artist and MS Advocate 1:30 p.m. Closing Remarks and Introduction to Poster Session/Vendor Booths, Albert Lo, M.D., Ph.D. Exhibit Hall Open, Abstracts/ Posters on Display

hen it comes to living with multiple sclerosis, for many the idea of exercising regularly can seem daunting. With concerns about balance, overheating and MS fatigue, many shy away from exercise altogether. But, in addition to being essential to general health and well-being, exercise is actually helpful in managing many MS symptoms. So what options are available to people who are living with MS? As it turns out, quite a few. “To start, the best thing anyone living with MS can do is walk,” said Mariska Breland, a personal trainer and founder and creator of Fuse Pilates® who was diagnosed with multiple sclerosis in 2002. “People who have MS should be walking all the time. It prevents and reduces spasticity, improves balance and increases strength. The one thing that people want to conserve is the ability to walk. Which means they have to keep using those muscles and maintain their current ability.” When Breland was diagnosed with MS after months of numbness in her feet and a stint of double vision, she didn’t know what the diagnosis could mean for her active lifestyle. A trail runner, tennis player and longtime gym member, the 27-year-old began researching her condition and types of exercise that could be beneficial to maintaining her muscle tone. And so, her path to Pilates began. “I had tried Pilates before and actually wasn’t a huge fan,” she recalled. “But when my neurologist and I started looking into low-impact exercise that kept my body temperature low, Pilates and yoga really stood out. Pilates as part of my health plan turned out to be so effective that I started teaching it just a couple of years later.” Pilates is a system of exercises using special apparatus, designed to improve physical strength, flexibility and posture, and enhance mental awareness. In Pilates, practitioners learn how to move correctly, with the right muscles firing at the right time. This helps in preventing fatigue by eliminating unnecessary muscle groups. Pilates also helps manage pain associated with improper movement or neuropathic pain that is a result of damage to nerve fibers. “My neuropathic pain increases during heated aerobic activity, but Pilates minimizes that pain by allowing me to be present and feel my body through complex actions that require intense concentration,” explained Breland. “It is that concentration that distracts from the pain.” Breland shared that she and several doctors and neurologists believe that some disability is preventable and likely occurs through poorly managed symptoms and inactivity. The key is deciding to stay active, even when it’s hard. “That’s not to say I don’t have relapses like everyone else, but I work through them,” shared Breland, who has even completed a research project on Pilates for MS patients which she expanded into an indepth Pilates For MS teacher training and textbook. “And when I was recovering from surgery last summer, I bounced back quickly because my body already was strong going in. I could recover what I had lost much sooner than someone who didn’t have that initial activity level. The same happens after a relapse.” In addition to Pilates, barre classes are also trending as low-impact ways to strengthen muscle groups. Barre classes feature a horizontal bar at waist level on which ballet dancers rest a hand for support during exercises. Classes begin with a warmup focusing on postural strength and alignment, followed by a series of upper body exercises using light weights. The ballet barre is used to sculpt the lower body, abs and for flexibility training. “Barre classes feature a lot of standing work, focusing on lower-leg weakness and posture,” explained Breland. “For my Fuse Pilates class,

Exercise & MS:

Staying Strong by Jacqueline Sembor, Senior Communications Specialist

…in addition to being essential to general health and well-being, exercise is actually helpful in managing many MS symptoms… 13

I mixed elements of barre and yoga into traditional Pilates work, created new exercises and added some upbeat music.” Breland says the chronicity of multiple sclerosis makes it essential that any balance training intervention can be continued safely on a long-term basis in a home or community setting. One way to accomplish this is to investigate the effectiveness of established community-based exercise programs that may have the potential to improve balance. A variety of exercise programs are typically available through community gyms, exercise DVDs and even online subscriptions. For the more adventurous who get bored with routine workouts, kickboxing might be just the trick to getting back to the gym more often. “I started kickboxing when my son was taking Tai Kwon Do classes,” began Leslie Silverman, a West Hartford resident who was diagnosed with MS 11 years ago when she was 40. “But I started getting overheated, losing my balance and experiencing dizziness and nerve pain. I eventually received my diagnosis, but the symptoms continually worsened and I was forced to quit my workouts.” Although Silverman said she isn’t an exercise buff, she missed her trips to the gym, and missed feeling the strength it brought her. She began a disease-modifying therapy and began a regular course of Lyrica for the severe nerve pain she was experiencing in her arms. As soon as she could, she decided to get back on the mats. “Kickboxing for me never was and never will be about aggression or fighting – and I think that’s what comes to mind when people first think about any form of martial arts,” Silverman said. “To me, kickboxing is about feeling strong. I love feeling my muscles working. But it’s also about discipline, control and thoughtfulness. I find it helps cognitive symptoms, too. ” Silverman tried a few gyms, but found a home at Plus One Defense Systems in West Hartford where she enrolled in kickboxing classes once again. “I am open about my MS – my coaches know and some classmates know, but that doesn’t mean I get special treatment,” said Silverman. “When we pair up, I know my partner won’t throw a punch at the pads I’m holding with any less force than he or she would with anyone else. And when I went for my level one certification, I knew I had to pass the test the same way everyone else did. But I do have to be mindful of my limits and make sure I don’t overheat or wear myself down – or I’ll be paying for it the rest of the week.” Silverman shared that just like everyone else, she pushes herself in class to ensure that she grows both muscle and ability – her strides in progress just might be a little shorter than someone else’s. “I am always aware that I have spasticity and heat intolerance issues, so I have to be careful with my body,” she said. “I often modify the movements a bit with my coach, or if other people are doing 30 reps I might have to stop after 10, but I know that I’m going out there and giving it all I’ve got. I know I can’t do everything, but I push myself to do as much as I can.” Silverman also can attest to the ways in which kickboxing has helped her through her MS symptoms. “A year ago the spasticity in my hips was so bad that I couldn’t walk and my short-term memory was a real problem,” she shared. “But when I start a kickboxing sequence, I’m forcing my reactions, muscle memory, vision, balance and short-term memory to all work together – everything that MS tries to weaken. Boxing has been shown to be neuro protective

for people with Parkinsons, so I figure it must also help for MS!” And, adds Silverman, unlike going to a gym and running on a treadmill or lifting weights by yourself, taking a class like kickboxing or Pilates does a lot more than work on your balance and strength. “Taking classes with other people is fun!” she said. “It’s different every time so I don’t get bored. It’s interactive and social, too. Plus One has provided a community of encouragement and positivity. On days when I go to my kickboxing class, I seem to have a little more spring in my step when I get out of bed. I look forward to the challenge, even on days when my symptoms are in higher gear.” While multiple sclerosis can leave people feeling weak, taking part in a communal exercise class not only works on strengthening muscles, but confidence, too. “When I go to the gym, I don’t feel like an MS patient – I’m a fighter,” she said, adding that she is working with the owner of Plus One Defense Systems to start a class for those living with neurologic challenges like MS. “Even if you’re in a wheelchair, you can focus on using your upper body. It’s all about mastering your space and feeling strong in your space.” Regardless of what type of exercise those living with MS choose, one thing is for sure – keeping active and moving can only do good. It is important to discuss exercise regimens and classes with a doctor to chart a best approach.

The key is deciding to stay active, even when it’s hard.

Learn more about exercise and MS at nationalMSsociety.org.

Where to Start Investigate joining a hospital-based integrative wellness program or exercise and sports groups offered by rehab hospitals. These are great places to start because professional staff know about MS and can offer a variety of programs. n Inner Transformations in Trumbull offers an MS Yoga Class, led by Nora Reiner Gluck, a psychotherapist with 35 years of experience with individuals, couples, families and groups. Her work as a yoga therapist combines psychotherapy with ancient yogic practices designed to relax the body and calm the mind. This instructor also leads a yoga class for people living with MS at the Lakewood-Trumbull YMCA, details for which can be found on Page 23. n An exercise group for the mobility impaired meets Tuesdays and Thursdays from 11:15 a.m. to noon at the Jewish Community Center in Woodbridge. The class is mostly made up of muscle strengthening and some cardiovascular work with the use of weights, balls, tubes and the participant's own body weight. n The Transition to Fitness Program at Mount Sinai provides participants an opportunity to improve cardiovascular health, muscle strength and flexibility, as well as a sense of well-being, through a personalized exercise program designed by a physical therapist in a motivating and supervised environment. The long-term goal of the program is for clients to learn to maintain a training program in their own community. n Hospital for Special Care (HSC) has over 70 years of experience supporting children and adults living with physical disabilities. Through participation in Adaptive Sports Programs, individuals are offered the opportunity to set personal goals and achieve greater levels of independence. Adaptive sports and fitness programs, both competitive and recreational, teach life skills, promote confidence, build relationships and develop leadership skills.

The Journey To Home

Lawry MS House To Open By End of 2016

new model of nursing home is coming to Connecticut thanks to the Jewish Senior Services organization. And, with funding to be raised and contributed by the National MS Society, Connecticut Chapter, one unit of the new design will be designated, in perpetuity, for those living with multiple sclerosis. In 2014, Jewish Senior Services began development on a project utilizing the ‘household’ model of a nursing home. In the household model, long-term care homes adopt a person-centered approach that shapes the physical environment, organizational structure and interpersonal relationships in ways that create an atmosphere of a genuine home, while providing residents with clear opportunities to direct their own lives. The Jewish Senior Services household model consists of 20 ‘households’ of 14 residents, with private bedrooms and bathrooms surrounding the home’s large living room, dining room, kitchen, den and patio. Other facility amenities include a health club, 25-yard pool, fitness rooms, sauna, massage, theater for music and entertainment, restaurant with space for entertaining and celebrating with family and friends, a beauty salon, gift shop, place of worship, work activity center, clinic and more. The unit designated for those living with MS will be named the Sylvia Lawry MS House, in memory of the founder of the National MS Society. It is the only one designated for a specific disease and tailored to a younger population that is in need of nursing home care. The facility will add ceiling lifts to bedrooms as needed in the MS unit and will also increase the number of certified nursing assistants and licensed nurses to meet the needs of the residents of the unit. Anyone living with MS interested in this nursing home should fill out an application as soon as possible. For more information on this development, visit jseniors.org or call Liz Lockwood at 203.365.6400. PAID ADVERTISEMENT

TEAM JENIFER BEER TASTING — $11,000 In March, Cheshire residents Don and Jenifer Walsh hosted the 11th annual Team Jenifer Beer Tasting, at Lane Construction Co., in Cheshire to benefit the Team Jenifer Walk MS fundraising team. The event raised roughly $11,000. Over the past 11 years, the event has raised more than $100,000 to support the fight against MS. The team is named in honor of Jenifer Walsh, who has been living with multiple sclerosis for 18 years. (From left to right) Michael Branda of the Connecticut Chapter poses with event organizers Jenifer and Don Walsh at the 2016 Team Jenifer Beer Tasting.

PC AK E ROCK VILLE HIGH CU ,336 EXTR AVAG ANZA — $3 ville High School ck Students and facult y of Ro pcake Extravaganza participated in the 2016 Cu thousands of in April. Teams prepared event, with proceeds cupcakes to be sold at the S Society and benefiting the National M t raised $3,336 for the another charity. The even , a former Rockville MS Society. Lois Gottlieb s volunteered with High staff member who ha eption, was touched Cupcake Wars since its inc include the National to learn of the decision to Chapter, as one of the MS Society, Connecticut this year and helped event’s beneficiaries again support ticket sales.

JULIE’S GEMS SHOPPING FOR A CAUSE — $2,800 Approximately 20 businesses gat hered at the Hartford German Club to hel p raise funds for Newington resident Julie Gian santi’s Walk MS team, Julie’s Gems. Julie’s sister-in-law Christina Bengtson organized the event. Some vendors donated their entire com mission for the day’s sales. The event attrac ted over 100 people and raised $2,800.

JILL’S RACE FOR MS — $3,000 Chairman of the Chapter’s Board of Trustees Jack Betkoski worked with the Beacon Falls Lions Club to host a 5K as part of the 18th Annual Beacon Falls River Festival, held Saturday, May 14, at Volunteer Park. This was the first year that the event began with a 5K, called Jill’s Race For MS. The race was named in memory of former Beacon Falls resident Jill Betkoski, who lived with multiple sclerosis.

NA S — $2,500 PA INTING W ITH BA NA H’s Mike Stacy hosted In May, Lite 100.5 W RC With Bananas event at the second annual Painting le to benefit his Bike MS Scene Art Bar in Unionvil has participated in the Banana Bike Team. Stacy ke MS event for 26 years. Connecticut Chapter’s Bi The event raised $2,500.

SUPER MS MELTERS PAINT NIGHT — $1,400 Captain of the Super MS Melters team, Courtney Cooper, worked with Muse Paint Bar in West Hartford this April to host a paint night to benefit her Walk MS fundraising team. The event attracted more than 40 guests and raised more than $1,400.

Symptom Management:

Bladder Issues & MS

ladder problems are common in multiple sclerosis, with between 70 and 80 percent of individuals living with MS experiencing them at some point. And for those that do face these issues, symptoms will vary from person to person. That means that bladder symptoms are best dealt with on an individual basis. The good news is that bladder symptoms are among the most successfully treated aspects of MS, and should be addressed for both prevention of health-related complications as well as to improve quality of life. “Most people are relieved when they come in for the first time to find that we just want to talk to them about their symptoms and history so we can start to develop a picture of what is going on,” shared Tara Breslin, a Certified Physician Assistant in the neurology clinic at the Mandell Center. Breslin has been with Mount Sinai Hospital since 1996, and practicing adult and rehabilitation medicine since 1986. “We also like to have a long discussion about how the bladder is supposed to function, and how MS can interfere. It typically isn’t until the next visit that the doctor will conduct testing.” When preparing for a visit to the a urologist, ask these questions: n Do I get up more than once a night to urinate? n Do I urinate more frequently than I used to? n Do I ever have to rush to the bathroom to avoid an accident? n Do I leak urine or have accidents? n Do I experience hesitance or do I need to strain or push to urinate?

If there is a yes in there, it might be a sign of bladder dysfunction. In order to determine which types of issues are causing symptoms, a doctor can run several basic tests, including urinalysis, a bladder scan to check for emptying of the bladder, a renal/bladder ultrasound and urodynamics. “When a patient comes in and explains their symptoms, urodynamic testing is the gold standard in identifying how the bladder is functioning so I can best develop an individualized treatment plan,” shared Marlene Murphy-Setzko, M.D., a Urologist and Director of Neuro-Urologic services at the Joyce D. and Andrew J. Mandell Center for MS Care and Neuroscience Research. “It’s the same as if someone told their doctor they were having chest pain – they need to run an EKG to determine if a person is suffering from heartburn or a heart attack.” Urodynamic testing (also called urodynamics) is a procedure that looks at how well the bladder, sphincter and pelvic floor muscles are storing and releasing urine. Most urodynamic tests focus on the bladder’s ability to hold urine and empty steadily and completely. Urodynamic tests can also show whether the bladder is having involuntary contractions that cause urine leakage, or worse, back pressure up into the kidneys. Rather than restricting the amount you drink, time your fluid intake strategically: avoid drinking within two hours of any activity that won’t have bathroom breaks. Also limit your before-bed beverages, so that you’re more likely to sleep without interruptions from your bladder. Aside from behavioral and dietary adjustments, if a person is experiencing storage dysfunction a doctor may prescribe 18

Lesions in the brain and spinal cord caused by MS can interfere with the transmission of signals between the brain and urinary system. Signals might get dropped and never reach the intended receiver, or signals might be intermittent, causing poor coordination between the bladder and pelvic floor. These signal interruptions can result in three primary types of urinary issues: 1 Storage Problems – inability to retain urine as it accumulates. 2 Emptying Problems – inability to completely eliminate stored urine. 3 Combined Dysfunction – a combination of the two. an anticholinergic medication to relax the detrusor muscle, which forms the bladder wall. Kegel exercises, in which the levator muscles are squeezed, held and then relaxed for a number of repetitions, can help tone the bladder muscles. Physical therapists can help teach when and how to perform these and other exercises to strengthen and coordinate pelvic floor muscles. A handful of techniques that stimulate nerves may also be effective in managing bladder symptoms. Another option, which Murphy-Setzko says is not for everyone and is based on urodynamic testing, is onabotulinumtoxinA injections. “Botox has been the greatest medical intervention in the past decade,” said Murphy-Setzko, explaining that the medication works by calming the nerve activity associated with overactive bladder muscles. “Before 2009, there wasn’t much aid I was able to provide to those who had spastic bladders as a result of their MS. I had medications that often were ineffective or irreversible surgical interventions.” If it is determined that a person is suffering from emptying dysfunction, there are only two options for treatment. The first is a medication originally developed for prostate problems, which works by relaxing the area of the bladder neck and pelvic floor. The second option is intermittent self-catheterization. “Today, catheterization can be done anywhere, anytime, discreetly,” said Murphy-Setzko. “Catheters are self-lubricated and easily managed by those who are physically able to manipulate them. And someone catheterizing won’t take any longer than the person urinating in the adjacent stall.” As a last resort, surgery can also be considered. The simplest is called a suprapubic cystostomy, which involves making a small incision and inserting a small tube into the bladder. This tube then drains urine into an external collection bag. “I will never do anything that’s irreversible when a patient is in the middle of a relapse or as a first attempt at a solution,” said Murphy-Setzko. “If we determine that a surgical option is the best way to improve quality of life or prevent damage to the kidneys, that is what we will do.

Every problem can be fixed.” In fact, bladder problems left unmanaged can escalate and cause a host of other medical problems, such as infections, depression, skin breakdown, kidney stones and other kidney problems such as kidney failure. Bladder problems can also interfere with sleep, social activities and work. “Unfortunately, some patients do not get help until their kidneys are in danger, in which case I have to act quickly to prevent long-term damage,” said Murphy-Setzko. To prevent this from happening as much as she can, Murphy-Setzko and her team passionately promote awareness of bladder and bowel problems in the MS community. “Behind pneumonia, the second leading cause of death in people living with MS are urologic complications, which is something that we know how to manage and prevent,” said Murphy-Setzko. “While I understand that many people are embarrassed by these issues, there is no reason why that should be the case. People need to understand that it is a result of the disease that they have, and we need to know what’s going on so that we can provide care. We need to communicate about these issues, not only because they are unacceptable and fixable, but also very dangerous.” Want to learn more? To watch a video featuring Dr. Marlene Murphy-Setzko and other professionals discuss how to manage bladder and bowel issues in MS, go to YouTube. com and search for “Managing Bladder & Bowel Issues In MS.” For more information on other MS symptoms, go to ctfightsMS.org.

Points To Remember Bladder disturbance is common in people with MS. A good understanding of potential solutions helps people come to terms with this upsetting problem. Serious complications usually can be prevented with good care and follow up. Control of symptoms is more easily accomplished with early treatment. Consultation with a knowledgeable health care provider should take place at the first sign of a urinary problem. In most instances, bladder symptoms can be controlled successfully using strategies that include appropriate medication, management techniques and self-help. Since bladder and sphincter function may vary over time, it may be necessary to repeat diagnostic tests and try various strategies. 19

EM noticias en español El impacto que ocasiona la esclerosis múltiple en la familia Por: Dra. Maria Reyes-Velarde

Cuando hablamos de las personas que viven con esclerosis múltiple (EM) nos referimos a la persona que tiene la enfermedad y a aquellas que están en su entorno día a día. Es muy probable que la familia no tenga un frente común, un proceso coherente y fluido para lidiar con la enfermedad. A menudo el frente está lleno de conflictos donde se reflejan los sentimientos, las actitudes, las necesidades y las prioridades de cada una de las personas involucradas. Según progrese o se manifieste la enfermedad este frente cambiará ya que cada miembro de la familia sentirá y le afectará la EM de una manera diferente. Le afectará porque la enfermedad obliga al individuo que la padece a realizar cambios en sus actividades y responsabilidades obligando a las personas a redefinir su papel en la familia. ¿Cómo puede un familiar o amigo mitigar el impacto de la EM? n Aprenda más sobre la EM. Mientras más sepa, más fácil le será comprender a la persona que tiene EM y ayudar a la familia con los cambios. nPregunte a la persona con EM cómo le puede ayudar. No asuma que la persona requerirá la misma ayuda todo el tiempo. Sus necesidades cambiarán según se manifieste la enfermedad. Siempre pregunte, no asuma. n No compadezca a la persona con la enfermedad o fomente este sentimiento en la familia. El “pobrecito(a)” o “ay bendito” no tiene lugar en la familia que desea ayudar a la persona con EM a llevar una vida plena. Es importante que los familiares continúen incluyéndole en las actividades sociales aunque la persona no vaya la mayoría de las veces. Es mejor preguntarle a la persona qué puede hacer para que la próxima vez le sea más fácil participar en la reunión. nHable con otras personas sobre la enfermedad. Pregunte a sus doctores, enfermeras o proveedores en salud acerca de la enfermedad. Únase a grupos de apoyo o sea voluntario con la Sociedad Nacional de Esclerosis Múltiple. Si no conoce donde está la oficina más cercana a Ud. vaya a www.nationalmssociety.org o llame al 1-800-344-4778. Participar en grupos de apoyo o ser voluntario le ayudará a compartir experiencias y a aprender de otras personas que viven con la enfermedad. ¿Cómo puede ayudar la persona con EM a la familia y amigos? n Aprenda a decir lo que le pasa. n Dígales lo que siente. n Eduque a su familia sobre la enfermedad. nNo abandone sus actividades sociales o deportivas favoritas. n De ser necesario, busque apoyo fuera de la familia. Recursos disponibles a miembros de la familia hispana: Café con Leche es un grupo de apoyo de la Sociedad que se reúne mensualmente por teléfono bajo la dirección de un profesional para todos los hispanohablantes afectados por la esclerosis múltiple y que quieren comunicarse con otros. Para averiguar más o inscribirse, llame al 1-800-344-4867, opción 3. La experiencia hispana/latina con EM en el internet es un grupo en el MSConnection.org para que las personas de descendencia hispana puedan conectar y compartir sus experiencias. Les invitamos a unirse, compartir y hacer conexiones. Visite MSconnection.org/Hispanicgroup hoy mismo. Content Contributed by Moyra Rondon, LCSW Senior Director, Counseling Programs and Hispanic Outreach National MS Society, New York City - Southern New York Chapter

I have just the thing for you! Challenge Walk MS offers a 30-mile walk over two days or a 50-mile walk over three days. The weekend will test your strength and your spirit and you will go through both physical and emotional extremes. You will be forever changed by the experience. Several years ago I picked up a pamphlet advertising Challenge Walk MS. As I read through the information I never considered registering for the walk. My excuse list was long. "I am too old, I am overweight, I am out of shape and I have MS." Somehow the pamphlet ended up on my kitchen counter where it sat for several weeks. Occasionally I would eye it suspiciously from across the room until one day I decided to go for it and I registered. That was seven years ago. What started out as something that I thought would be a one-time deal has turned into an annual event for me. This year I will be participating in my 6th Challenge Walk MS on Cape Cod. This event is a one of a kind opportunity to meet some amazing people, hear incredible stories, and be inspired. It’s also a time to raise awareness and money for MS which will make a significant difference in the lives of people living with this disease. It is a chance to physically challenge yourself and to reach beyond your limits. There’s a reason why it’s called ‘Challenge’ Walk MS. It is one of the hardest and yet most rewarding experiences you will ever have. The walk is a fully-supported event and there are people to help you all along the way with training, fundraising and any other information you need leading up to the walk. The support continues throughout the entire weekend. There are countless volunteers along the way cheering you on, tending to your battered feet, rubbing your sore muscles, feeding you, hydrating you, hugging you and offering words of encouragement. When I’m walking and start to waiver and feel like I can’t go any further, there is always someone there to tell me what a great job I’m doing and motivate me to continue. I have wanted to quit, but the volunteers keep me going. I went in to my first Challenge Walk with no expectations about how far I would be able to walk. To my

surprise, I actually completed all 20 miles on the first day! I never imagined I would be able to walk that far. By the end of the weekend I had walked 35 miles at my first Challenge Walk! When I crossed the finish line limping and in tears I knew I had to register for the next year. I was determined to complete the whole 50 miles. It took me a few tries, but I improved each year. It is with a great sense of pride and accomplishment that I am able to say that I walked all 50 miles in the last two Challenge Walks. I never thought I would be able to do something like this. I’ll keep walking for as long as I can! There are walkers of all ages and abilities there. There is something very comforting about being surrounded by people who know exactly what you are going through. There is no sense of competition or urgency, only a desire to do your personal best. It is hard to explain all the emotions that come over you when you cross that finish line regardless of how far you have walked. It is truly overwhelming. You feel both exhausted and exhilarated. There is a celebration barbeque lunch at the finish in recognition of the amazing feat we have all just accomplished. We are then bussed to the location where the walk began three days earlier. They shut down traffic and the Challenge Walk parade marches down the middle of the street chanting, “3 DAYS, 50 MILES, CLOSER TO A CURE!” People line the sides of the street and applaud as we walk past. It is incredibly emotional. At the finish, family members and friends embrace the walkers, dissolving into smiles, laughter and tears. The walk will challenge you. The experience will change you. Are you up to the challenge?! Cheers!

Terry Bridges

For more information about Challenge Walk MS visit nationalmssociety.org. 21

SUPPORT GROUPS BRANFORD 3rd Wednesday, 5:30 p.m. James Blackstone Memorial Library 758 Main Street Cheryl at 203.535.3053

DANBURY 2nd Wednesday, 7 to 8:30 p.m. Main Street Rehab Center, 235 Main Street Amy Watkins at 800.344.4867 Professionally facilitated

DANBURY Caregivers 2nd Wednesday, 7 to 8:30 p.m. Main Street Rehab Center, 235 Main Street Joe at 203.264.2252

DERBY 3rd Wednesday, 4:30 to 6:00 p.m. Griffin Hospital, 130 Division Street Lisa at 203.231.4716

GRANBY 2nd & 4th Monday, 1 to 3 p.m. Granby Senior Center 15 North Granby Road Meaghan at 860.428.2463

GREENWICH 2nd Saturday, 1 to 3 p.m. Mara Investments 125 Greenwich Ave., Paula at 203.629.7053

HAMDEN 3rd Saturday, 11 a.m. The Playwright, 1232 Whitney Avenue Paul at 203.213.5466

HARTFORD Last Tuesday, 6 p.m. Mandell Center, 490 Blue Hills Avenue Stacy at 860.502.5973 or Ashley at 203.583.0169

Please call group leaders prior to attending a meeting as dates and times are subject to change and meetings may be moved due to holidays. The contact information provided should not be used for solicitation purposes. Additional support can be found online at msconnection.org.

MIDDLETOWN 2nd Saturday, 1 p.m. Wadsworth Glen, 30 Boston Road Mary at 860.828.5240

MILFORD 2nd Saturday, 1:30 p.m. Milford Hospital, 300 Seaside Avenue Debbie at 203.878.6661 or John at 203.874.1225

NEWINGTON 2nd Thursday, 12 to 2 p.m. Newington Senior and Disabled Center 120 Cedar Street Charlie at 860.667.1314 or Tom at 860.236.2751

NEW LONDON 4th Wednesday, 6:30 p.m. Lawrence & Memorial Hospital 365 Montauk Avenue Eileen at 860.442.0711, ext. 2393 or 860.625.1024 Professionally facilitated

NORWALK

2nd Wednesday, 7 to 8:30 p.m. VNS of Connecticut, 65 Commercial Blvd. Amy Watkins at 800.344.4867 Professionally facilitated

TRUMBULL 3rd Tuesday, 6:30 to 8 p.m. Trumbull Library, 33 Quality Street Amy Watkins at 800.344.4867

VERNON 2nd Friday, 6 to 8 p.m. Trinity Lutheran Church 20 Meadowlark Road Patty at 860.874.3220

WATERBURY 3rd Monday, 6 p.m. Village at East Farms, 180 Scott Road Jackie at 203.753.2708

WEST HAVEN Every Thursday, 11:15 a.m. West Haven VA Hospital, Building 2, 3rd floor 950 Campbell Avenue Mary Lou at 203.932.5711, ext. 2276 Open to veterans only. Professionally facilitated.

1st Friday, 1 to 3 p.m. South Norwalk Library, 10 Washington Street Erica at 203.984.7027

NORWALK 1st & 3rd Tuesday, 1 to 3 p.m. Triangle Community Center, 618 West Avenue Ed at 203.807.0194 Group for LGBT people and their allies with MS

PLAINVILLE 3rd Monday, 7 to 9 p.m. Wheeler Clinic, 91 Northwest Drive Irma at 860.793.9272

SHELTON 2nd Monday, 2 to 3:30 p.m. Plumb Library, 65 Wooster Street Amy Watkins at 800.344.4867

MANCHESTER 1st Monday, 10 a.m. Presbyterian Church of Manchester 394 Lydall Street Karen at 860.746.4247 or Nancy at 860.742.5155

TORRINGTON

Be sure to visit ctfightsMS.org and click on the “Services and Support” button to find out the most up-

STORRS 2nd Tuesday, 6:30 p.m. Mansfield Senior Center, 303 Maple Road Joan at 860.429.7271

to-date information on the vital programs and services offered by the Connecticut Chapter.

UPCOM ING PROGRA MS Featuring a renowned speaker each year, the Get Connected MS Luncheon provides a forum for colleagues, community businesses, friends and family to connect to important topics that address everyday living while providing an opportunity for networking and camaraderie. Friday, Oct. 21, 2016 Noon – 1:30 p.m. The Hartford Marriott Downtown For tickets and sponsorship opportunities, please visit ctfightsMS.org or email kate.moore@nmss.org.

Lakewood-Trumbull YMCA Yoga for People Living with MS A general yoga class for beginners, those with limited mobility and those using wheelchairs. Lakewood-Trumbull YMCA 20 Trefoil Drive Trumbull, CT 06611 203.445.9633 Classes are Mondays and Wednesdays

Couples’ Weekend Saturday and Sunday, Aug. 27 & 28 Glastonbury Everyday Matters Saturday, Sept. 10 Hartford Making Sense – A Gathering for the Newly Diagnosed Tuesday, Sept. 13 Meriden Health Insurance: What Everyone Needs To Know Tuesday, Sept. 13 Teleconference Caregivers’ Meeting Saturday, Sept. 24 Brookfield Making Sense – A Gathering for the Newly Diagnosed Tuesday, Dec. 13 Farmington To register or for more information on these and other programs, visit nationalMSsociety.org/CTcalendar. Phone: 1.800.344.4867 Email: programs@ctfightsMS.org

11:45 a.m. – 1 p.m. To register, contact programs@ctfightsMS.org

Donors Embrace Matching Gift Campaign, Secure $50K For Connecticut

We were touched by Julie and David Carter's dedication and generous match in memory of David's brother, Keith. When so many supporters gave and we exceeded our goal, we were overwhelmed. On behalf of all those affected by MS who will benefit, thank you from the bottom of our hearts.

n the spirit of giving, National MS Society, Connecticut Chapter, board member David Carter issued an enticing challenge to local donors. Carter agreed to match every donation that came in to the Connecticut Chapter in a fund created in his brother’s memory, up to $50,000. Donors heard his call for support, and answered.

— Lisa Gerrol

Thank you for supporting a cause that is very near and dear to my heart. Some researchers have stated that they believe a cure for MS is less than 10 years away. With your help, we’re getting closer to ending MS forever. — David Carter Keith Carter

R NE W

Fo r m p u C er

Twelfth Annual Golf MS Tournament Thursday, September 29, 2016 Lake of Isles at Foxwoods North Stonington, CT

SPEAK UP!

We want to hear from you! The editor of MS Connection wants to know what you think of our publication, and to get your feedback easily, we’ve put together a short online survey. With your input, we will be able to ensure that the publication’s layout and content are best suited for your interests and needs. The survey should not take more than 10 minutes to complete. To access the survey, please visit surveymonkey.com/r/connection2013.

Join us for a great day on the links and play like a pro! Non-golfers are welcome to join for the evening’s dinner and reception. For registration and sponsorship information, please contact Eric Szafran at 860.913.2550 or eric.szafran@nmss.org.

PAID ADVERTISEMENT

MS.

Major stiffness. Muscle spasms. Does your employer have a workplace giving campaign? Don’t forget to select the National MS Society through the United Way or Community Health Charities giving programs! If you have difficulty locating the Society’s campaign code, simply write in National MS Society, Connecticut Chapter.

To learn more about how your gift can make a difference, contact Kara Preston at 860.913.2550 or visit us online at ctfightsMS.org.

EXIT STAGE NEVER.

Clinical research study for MS spasticity enrolling now. Investigational study study • Investigational

medication medication of of muscle muscle spasms/stiffness spasms/stiffness • Study-related Study-related care care from from aa local local study study doctor doctor

Call (860) 443-4567 New New London London County County

Study Study Doctor: Doctor: Laurence Laurence Radin, Radin,MD MD 342 Montauk Ave. New London, CT

Learn Learn from people living with MS, those who care about them and MS experts on a wide range of topics.

Share Sharing your story connects you to the community and gives strength and hope to others.

Amy Meisner was diagnosed with MS in 1997. For someone who has always danced, MS would seem like the end. But for Amy, it means the star t of a new chapter. She’ll never leave the floor, still dances from her wheelchair, and is a great choreographer. Embracing Amy’s undying passion, the National MS Society teamed up with LaTonya Swann to create an entirely new and inspired dance experience through vir tual reality. See their experience and find out how you can share yours at WeAreStrongerThanMS.org.

Together We Are Stronger

Connect Join discussions and groups to connect with people like you, share your experiences and get support.

Connect now at MSconnection.org 25

PAID ADVERTISEMENT

Golf MS Thursday, September 29 Lake Of Isles North Stonington

2016

CALENDAR OF EVENTS

Team Finish MS at the Eversource Hartford Marathon Saturday, October 8 Bushnell Park Hartford MS Happy Halloween Hour Thursday, October 13 The Society Room Hartford Get Connected MS Luncheon Friday, October 21 Hartford Marriott Downtown Hartford

FOR DETAILS

ctfightsMS.org

MS Dinner Of Champions Thursday, November 17 Stamford

CLASSIFIEDS FOR SALE Two power-reclining armchairs. Oversized chairs help users stand up. One is brown, one is cranberry in color. Both in mint condition. Asking $250 each. Call Debbie at 860.632.0228. FOR SALE Brand new, never used Hoveround Chair. Must sell! Grey with brand new batteries and charger. Extremely comfortable with extra thick padding. Special wide and extra strength, foldable threepanel Hoveround wheelchair ramp. Still in the plastic. Manual wheelchair and rollator with hand brakes also available. Call or leave message for Lyn Marie at 203.753.1882. FOR SALE Two Amigo scooters, both need new batteries. $400 apiece; One Bruno’s scooter trunk or van lift. $500; One set of hand controls. $100. All sales final and will go to highest bidder. Seller has right to reject bids. Call 860.295.0191. Pick up location in Marlborough. FOR SALE Power wheelchair, Pride Quantum. Full tilt and recline. Includes charger. Please call Jennifer for more information at 860.585.6168 or 860.329.9075. FOR SALE Two bed, two bath 1,897 sq. ft. house in Winchester with indoor heated swimming pool, renovated for individuals with disabilities. Split-level. Move-in ready. Additional 14x35 garage can be used for animals or vehicle storage. Call 860.404.5404. Please contact Jacqueline Sembor at 860.913.2550 or jacqueline.sembor@nmss.org to place an ad.

BOOKS FOR CHILDREN

IN THE RAYMOND P. HOWELL LIBRARY LET’S TALK ABOUT LIVING WITH A PARENT WITH MULTIPLE SCLEROSIS by Melanie Ann Apel PowerKids Press 24 pages GRANDMA’S WHEELCHAIR by Lorraine Henriod Christa Chevalier, illustrator 1982

MY GRAMPY CAN’T WALK by Vanita Oelschlager Cleveland Clinic Press 2006 34 pages MY MOMMY’S SPECIAL by Jennifer English Children’s Press 1985

A book that can be used to explain the use of wheelchairs.

To request a book, please email programs@ctfightsMS.org or call Amy Watkins at 1.800.344.4867

S.M.I.L.E. University of New Haven

ALPHA PHI DELTA University of New Haven

SACRED HEART UNIVERSITY

TOGETHER, WE'RE STRONGER A sincere thanks to the student groups that support our events. Without your help, Walk MS simply would not be the same!

COAST GUARD ACADEMY

PHI SIGMA SIGMA Central Connecticut State University

If you are part of a group and interested in volunteering with the Connecticut Chapter, please ask Kate Moore about upcoming opportunities. Contact Kate at 860.913.2550 or e-mail kate.moore@nmss.org to help make a difference in the MS community.