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EmpowerSource Support Group News is a free newsletter provided by the Multiple Sclerosis Foundation. Its purpose is to share the activities and ideas of people around the country in MSF-affiliated support groups as well as information about outreach advocacy and living positively with MS. Volume XIV Issue 3 Summer 2015 The MSF does not advocate or endorse any specific treatments healing modalities or practitioners. The material presented in this publication is for informational purposes only. For specific advice consult your healthcare provider. Dear Friends Summertime brings forth a set of challenges and changes for many of us. The heat can be difficult for those with MS because of its tendency to cause a temporary worsening of symptoms. The break from school often necessitates modifications to the entire familys schedule. Challenges present us with the opportunity to rise above them and perhaps even grow stronger in the process. I hear these sentiments from many of you throughout the year when describing your MS diagnoses. I hope this issue of EmpowerSource will help start your summer off in a positive and productive way. We share an inspiring accomplishment by a support group in Roanoke Va. that can potentially serve as a springboard for your own project or idea. A support group in Henderson Nev. describes their experience with a simple drawing technique that has benefits beyond the joy of creating art. A number of haiku created as part of last issues MS Haiku Contest Life With MS in 17 Syllables grace these pages. The summer is a great time of year to begin or continue writing as a method of living well with MS. Our new contest aims to make you smile while once again calling upon your insight and creativity. Dive in Your summer of imagination and inspiration starts here. Sincerely Alissa Ayden Support Groups and Outreach Manager NLetter From the Manager NOrganizing an MS Wellness Conference Roanoke Valley MS Support Group NMS Haiku Contest Winners NTangling Together Sin City CHARMS MS Support Group NSupport Group Tip NMS Cartoon Caption Contest MULTIPLE SCLEROSIS FOUNDATION SUPPORT GROUP NEWS In This Issue 6520 N.Andrews Ave. Ft. Lauderdale FL 33309 888-MSFOCUS 673-6287 supportmsfocus.org A few months ago Support Group Leader SuzanneOConnellandCo-LeaderJuanitaGillespie found themselves pondering new challenges and projects for their support group to undertake. They already lead a thriving support group that brings fifty people together each month to gain information encouragement and friendship. They hold dinners parties special events and fundraisers throughout the year. However they feltreadyforabiggerendeavor.Theybrainstormed and bounced ideas back and forth. The group had a long list of speakers that wantedtopresentattheirsupportgroupmeetings. They wondered if there was a way to host all of them at once. Suzanne thought about the kind of eventsinwhichshelikedtoparticipateexplaining The only way I can really attend and enjoy functions is to have it under one roof without a lot of running aroundwith certain needs met like food and a place to rest. I figured if I was that way other people must be that way too. A popular annual activity in the Roanoke area is a retreat held each year at a camp over the course of a weekend. Suzanne and Juanita started to wonder if they could create a similar experience for their local MS community. Slowly but surely the beginnings of the MS Wellness Conference and Mini-Retreat began to take shape. Suzanne and Juanita didnt have a blueprint to follow but worked together to think through the organization process. Suzanne said We did not know the steps but knew we needed the means to pay for conference space food etc. I have been retired and out of the business world for over twenty years but knew what I liked asked others what they liked and worked with a vision. Theymadephonecallstovariouspharmaceutical representatives in their area to see if they would each be interested in sponsoring an educational program and meal during the days events. They then contacted different professionals in the area and asked them to volunteer to speak and give presentations. Along with the content of the conference accommodations and a location needed to be decided. Suzanne knew that she wanted the conference to take place in a hotel so attendees would have everything they needed under one roof. They were already familiar with a hotel where Suzanne frequently stays when she goes into town so they negotiated a special group rate for conference attendees and discussed their conference meeting room needs. They secured the best rate possible by asking the hotel what its lowest volume weekend over the next six months would be and then chose the conference date based on that information. They also requested late checkouts for all attendees and other necessary accommodations. Six weeks prior to the conference date Suzanne and Juanita held a meeting with other group members to discuss their progress and request further assistance. A dozen key support group members stepped up to help really pull the event together in six weeks. The beauty of it is that we have a group that is in it together Suzanne said. Organizing an MS Wellness Conference Roanoke Valley MS Support Group Roanoke Va. 2 3 After weeks of phone calls planning coordinating and hard work the conference weekend finally arrived. The event began on a Saturdaymorningwithbreakfastandapresentation by Suzannes 33-year-old son Eric. He said that while most people only become affected by MS when they or a loved one is diagnosed he has never known a life without MS as his mom was diagnosed when he was just an infant. The conference was designed as a family day so Eric spoke about his childhood and how he thought his mom was just lazy and never really understood what she was going through. He described the challenges of growing up with a single mom with MS and how he sometimes had to walk almost a mile to the bus stop alone find his own rides to sports practices and fix his own meals.Ericnotedthatiftherehadbeenaconference of this nature when he was younger it could have been life-changing. The first conference session was an interactive activity called Putting the Pieces Together. Each attendee was given one blank puzzle piece and the freedom to write or draw whatever they wanted upon it. The puzzle was laid out on a table in the conference foyer and attendees were instructed to place their pieces in order to build a community puzzle of ideas and encouragement. Suzanne said From the beginning I have told the group that its not my group or your groupbut it is our group each one of us owns a piece of it we are all a piece of the puzzle. The puzzle came together but is missing a few pieces. We will always have our door open looking for those pieces new people are welcome and we need them to complete our puzzle. Speakers throughout the day included neurologists speech pathologists a physical therapist an aquatics instructor a professor from a local college a life coach a mental health counselor a licensed clinical social worker a nurse practitioner and a service dog trainer. Topics and activities included memory exercises chair stretching wellness exercises self-awareness food psychology a service dog presentation programsforteensLSVTLOUDspeechtreatment managing MS and relationship conversations and weeding out your emotional garden. At a couple points in the day attendees were given the opportunity to choose between handfuls of concurrent workshops so they could pursue whichever interested them most. Smaller hospitality rooms were also rented to hold Lets Talk About MS group sessions that allowed different populations to chat amongst themselves while a moderator kept order and organization. Five group sessions were offered Living With MS Life Partners Teens Caregivers Family Friends and Living With MS No Caregiver. In keeping with the family theme of the weekend one hospitality room was set up exclusively for kids and teens in attendance to hang out play games and enjoy snacks. Theeveningprovidedevenmoreopportunities for informal chats in hospitality rooms including Teen Time Progressive MS Chat and Newly Diagnosed Chat. These rooms stayed open until 4 11 p.m. so attendees could enjoy food and company and there was even a Gee I Cant Sleep Chat for all the night owls still awake when the room closed. The conference picked up again on Sunday morning and ended that afternoon so everyone could start their travels home before the weekend was over. Looking back at the conference Suzanne said We had over 140 people from three states and the District of Columbia in attendance speakers from all across the U.S. and the local CBS station followed and promoted the event all weekend. When asked how she would best sum up the event she said It was about MS family helping each other empowerment through education socializing and feeling normal. Based on the wonderful success of this years endeavor Suzanne and Juanita look forward to organizingtheirsecondMSWellnessConference next year but share that the most important things on their minds right now are in Suzannes words a great support group a great support system in this area and nothing else really matters. The Roanoke Valley MS Support Group meets on the fourth Thursday of the month from 630 p.m. 8 p.m. at RVAR Roanoke Valley Associ- ation of Realtors 4358 Starkey Road Roanoke VA 24018. Please contact Suzanne at 540-404- 1167 or MSofRoanokeValleygmail.com or Juanita at 540-366-9403 for more information. In our last issue we asked you to tell us about what life with MS is like for you in the form of a haiku. Haiku is a form of poetry that consists of a verse of 17 syllables split up into three lines of five seven and five syllables. Haiku needed to fall into one of the following categories related to living with MS positive thinking and humor MS-free zone or catharsis. We at the MSF were so moved and inspired by all of your entries. Your collective talent truly amazed us and left us wishing that we had space to print all of your poems. Many of you submit- ted multiple haiku capturing a full and varied spectrum of emotion. We laughed got teary-eyed pondered grinned and deliberated while reading each and every one of your creations. Congratulations to our many winners whose haiku are printed on the next page. A special congratulations to Diane Randall of Sarasota Fla. whose name was chosen in a ran- dom drawing of our winning entries to receive a 25 gift card. A heartfelt thank you goes out to all of our participants for sharing your inner lives and creativity with us. We loved reading your wonderful haiku 5 Fall flat in the grass Cant get up alone Relax Pull out all the weeds Montye Conlan Ormond Beach Fla. Since MS has come Living is slower for me I see more that way Marie Holtje East Greenville Pa. Drumbeat different. Two MSers romancing Who would think it could Lann Wagenhauser Huston TX Faith being tested. What if the trials of MS are disguised blessings Sandra Phillips Manheim Pa. Falling and swerving MS intoxication With no alcohol Cheryl Dean Harrisonburg Va. Move feet left right. Good Child learning to walk No just me and my MS. Irene Bean Carmichael Calif. My hand is shaking as he wrote my number down. Its fine so does mine Diane Randall Sarasota Fla. Mermaid tea party Giggly smiles squeals of delight Moms abiding joy. Cynthia Azor Tampa Fla. Orioles migrate Pause to sample oranges Splash joyful color Suzanne Bratcher Hot Springs Village Ark. So many plans dreams Bursting to come together When my legs wake up Valerie Davis Benton Leesburg Ga. Wind blown the nectar still is sweet to butterfly same as hummingbird Montye Conlan Ormond Beach Fla. Mom play ball with me I wish I had energy Ill watch you today Carrie Haeck Maumee OH Slow my new normal Cant jog sprint dash leap or dance Slow slower slowest Suzanne Bratcher Hot Springs Village Ark. Monday and Wednesday Friday but not on weekends Life modifying Dale Moody Lady Lake Fla. Positive Thinking Humor MS-Free Zone Catharsis MS stole the dance. Its beauty and elegance still move in my soul. Eve Havens Fairhope Ala. 6 Tangling Together Sin City CHARMS MS Support Group Henderson Nev. Support Group Leader Angela Jones learned of Zentangle from a coworker who happens to be a certified teacher in the art form. After attending a class with her daughter and having a wonderful time Angela knew she had to share this activity with her support group. With the help of the Multiple Sclerosis Foundation Angela was able to purchase the necessary supplies. The Zentangle method is an easy-to-learn process that was created by Rick Roberts and Maria Thomas and consists of creating images by drawing structured repetitive patterns. Through recurring strokes patterns begin to emerge and builduponeachother.Nopriordrawingexperience is needed and people of all ages and walks of life can gain something through participation. Images created are referred to as tangles and are traditionally drawn on 3x3 paper tiles. Zentangleisoftenappliedtodiversefieldssuch as education motivational training therapy and relaxationpractices.Angelaandhergroupmembers personally felt the benefits of the technique. She said The group was hesitant at first but quickly got absorbed in the activity. Members voiced their amazement at the beauty they had created. One member stated he felt he always had an artistic desire but never found his talent until he tangled. Others wanted to share the activity with their children to assist with focus and create quality time together. One member said that she needed a new hobby and something to calm her mindandshefoundbothintheZentangleactivity Whether you choose to participate with your support group family members friends or on your own here are some tips from Angela to help you begin tangling effectively If you have dexterity issues use large pieces of high-quality paper instead of the smaller 3x3 tiles. When using the recommended fine-point pens apply pencil grips or other assistive devices to help improve your grip. Purchase a Zentangle kit containing instructions and a pre-assembled collection of supplies. Kits are available at most craft stores and online at zentangle.com and amazon.com. Wed love for you to share your tangles with us Email supportgroupsmsfocus.org with your creations. Visit www.zentangle.com for more information on the Zentangle art form. The Sin City CHARMS MS Support Group meets on the third Wednesday of the month from 6 8 p.m. at Barbara Greenspun WomensCare Center of Excellence 2651 Paseo Verde Parkway Suite 180 Henderson NV 89074. Please contact Angelaat702-493-5512orsincitycharmsgmail.com for more information. While the MSF recognizes the therapeutic benefits of art and creative activities the MSF does not advocate or endorse any specific product or therapy. 7 An agenda can help ensure that your meeting is well-organized productive and stays on track. If you find that your support group meetings are more disorganized than youd like or that as a support group leader you arrive unsure about or unprepared for the meeting you might benefit from using a meeting agenda. An agenda can serve many useful purposes including the following Notify attendees about the content of the meetingwhichcanincludetopicsfordiscussion guest speakers reminders questions and upcoming events Inform attendees about the structure of the meeting by listing the time allotments for each section of the meeting e.g. 3 315 p.m. Member Introductions Serve as a reminder list that can be checked off to ensure all planned topics are covered Help with time management and maintaining meeting focus Assist leaders during the pre-meeting planning process and Provide an opportunity for group participation by giving members the chance to submit agenda items and discussion topics for inclusion. Some people prefer to distribute the meeting agenda via email before the meeting so that members can know what to expect. Others choose to only distribute the agenda at the meeting when people arrive. Some might opt for a detailed list that includes the exact timing of each meeting item while others opt for a simple bulleted list of the topics to be covered. Remember although you may plan your meeting perfectly you can never anticipate everything so flexibility is always important. Of course what matters most when deciding how to structure your agenda is to use the method that works best for you and your group. Try This Support Group Meeting Tip MS Cartoon Caption Contest Submit your caption to EmpowerSource Support Group News 6520 N. Andrews Ave. Fort Lauderdale FL 33309 or supportgroupsmsfocus.org no later than Aug. 1. Can you help us caption the featured cartoon Use your MS experiences and insights to come up with a creative humorous or witty caption. Your caption should provide an original explanation for the cartoon featured here be clever and concise 30 words or less and relate to living with MS. Well feature our favorite entries in the next issue and one lucky winner willbe chosen to receive a 25 gift card. Illustration by Joseph Trevor Santeiro National Headquarters 6520 North Andrews Avenue Ft. Lauderdale FL 33309-2132 Non Profit Org. U.S. Postage P A I D Ft. Laud. FL Permit No. 2698 Change Service Requested Contact Alissa Ayden to start your own support group OR submit your questions comments pictures or articles Mail MSF Attn Support Groups 6520 N. Andrews Ave. Fort Lauderdale FL 33309 Email alissamsfocus.org Phone 888-MSFOCUS 673-6287 Lending Library Whether you are looking for caregiving resources an audio book a relaxation tape exercise video or a guide to alternative therapies for MS contact the MSF Lending Library. EmpowerSource Support Group News is sponsored in part with support from Free Subscription To subscribe to EmpowerSource Support Group News go to the MSF website www.msfocus.org click SubscriptionsPeriodicals and fill out the form or contact Program Services. WE WANT TO HEAR FROM YOU Call the MSF at 888-MSFOCUS 673-6287 or go to our website www.msfocus.org.