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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 4 Fall 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 Many of us around the country finally have some respite from the summer heat and a few exciting months ahead filled with the activity of the holiday season. While the holidays are certainly a time of celebration and enjoyment they can often be difficult and stressful as well. Around this time of year I always hope that youll remember to practice self-care. Nobody can do it all but by prioritizing the tasks at hand you can focus on the things that really matter and make sure you are able to complete them. Make sure that you set reasonable expectations for yourself and that your family members share them. Others may not realize you need help or are having difficulty if you dont tell them directly. While it may be tempting to compare your holiday plans to what they were like before MS this year has been different than all the other years that came before. It had its own ups and downs and triumphs and challenges. Holiday seasons ebb and flow just like the years in which they take place. Remember there is no one right way to celebrate the holidays. I hope you will allow yourself to create your own right way of doing so this year. In this issue youll read about support groups in Missouri and New York that take wonderfully creative approaches to support group meetings. We also share tips from more than a dozen group leaders to help you handle stress and enjoy the holiday season. Our newest contest aims to help you reflect positively upon this past year and think ahead to a bright and hopeful 2016. As always I wish all of you a holiday season filled with positivity joy and kindness. Sincerely Alissa Ayden Support Groups and Outreach Manager MULTIPLE SCLEROSIS FOUNDATION SUPPORT GROUP NEWS 6520 N.Andrews Ave. Ft. Lauderdale FL 33309 888-MSFOCUS 673-6287 supportmsfocus.org Kathy Lynn McCanes energyandenthusiasmare contagious and clearly evident from herapproach tobeingtheShow-MeState MSSupport Group leader. Kathys first experience with attending a support group was not a positive one. She was diagnosed in July1999afteraseven-year struggle with undiagnosed symptoms. She went to a support group meeting walked out crying and told herself that she would never attend a support group meeting again. HoweverwhenshemovedtoJoplinfromTexas she couldnt find any meetings or events related to MS. Most people she met did not seem to know much about the disease and she realized that a support group would be a beneficial way to raise awareness within both the MS and general communities.ShereachedouttotheMSFandworked withthelateHelenMangantostartasupportgroup as part of the MSF Independent Support Group Network. I chose to become a group leader and makeitmyownIdecidedmymeetingsweregoing to be uplifting and informative Kathy exclaimed. Things certainly didnt happen overnight. In June 2012 Kathy held her first group meeting. Kathy said Only two people showed which was a huge disappointment. However I did not let this deter my thinking and desire to open the eyes of Joplin up to MS. My goal was to reach out to those who shared the same mysterious disease as me. It did however take a while to get it going. Kathy continued to plan meetings spread the word about the group and raise awareness about MS. Sure enough meeting attendance grew and Kathy was able to fulfill her dream of creating imaginative and fun-filled support group meetings and gatherings featuring themes parties field trips and activities. HeresalookatsomeofthemeetingsKathyhas planned for her group over the past few years Numerous Fourth of July celebrations featuring a potluck meal and themes that inspire the dress code. These events usually take place near a pool so that members and their families can keep cool. Themed celebrations during the past couple years included Surf-n-TurfBeachfeaturingalivebandgames forkidsandadultsfoodandafireworksdisplay. Carnivalfeaturingcarnivalgamesfunnelcakes glow in the dark necklaces and a clown. Haunted Halloween event featuring games live entertainment a pumpkin patch bonfire hot dog and marshmallow roast and a mystery flavor drinks taste test contest. A drive-thru haunted hayride which was accessible by car for everyone including people with disabilities provided a fitting end to the evening. Friendsgiving Potluck Dinner featuring a raffle drawing potluck meal poetry live band and socializing. December holiday gathering featuring gift exchange games such as Secret Santa and White Elephant dollar store stocking stuffers raffle drawings contests and holiday songs such as Kathys favorite The 12 Days of MS sung to the tune of the well-known Christmas song. This year the groups plans to have an Ugly Sweater Contest as part of the festivities. Throwdown MS Hoedown which transformed a local church gym into a barnyard with bales of Themes and Parties and Fun Oh my Show-Me State MS Support Group Joplin Mo. 2 3 hay straw and Country-Western decorations throughout. An MS awareness table with an orange awareness ribbon tablecloth provided information and educational materials. Local Countrymusicartistsprovidedliveentertainment and there was also a petting zoo and games for kids. A nonalcoholic MS Saloon provided root beer floats and trail mix baggies. Dessert was plentiful including cupcakes chocolate covered pretzelsandwhitechocolatewithorangecovered marshmallows. Kathy notes that none of this would be possible withoutheramazinggroupmembers.Sheregularly relies on group members to help provide food and create decorations local businesses for donations local youth groups and volunteers to help at some of the groups larger events and members spouses to help set up before and clean up after meetings. Kathy also says that she couldnt do any of it without her other half Mark my husband is my biggest supporter and a helping hand and friend to all in need. Without him I could not do it as he helps with set-up carrying all items for me and just listening to my ongoing ideas for upcoming MS events. Kathy says that the group is like a family now and while there are serious moments she encourages fun and positivity by focusing on what everyone is able to do. Everyone enjoys the opportunity to attend these creative and fun-filled events where they can laugh be joyful and share experiences together. Being together is at the heart of it all as Kathy says when youre in a support group youre never alone. The Show-Me State MS Support Group meets at various locations in Joplin MO each month. Please contact Kathy at 214-738-6855 for more information. In Memorial Charmaine Loftis-Cothran Jan. 13 1961 Sept. 19 2015 Charmaine Loftis-Cothran led the African Americans Living with MS support group which has been affiliated with the MSF since 2001 served as an MSF Ambassador and was instrumental in helping to implement the MSFs African- Americans with MS educational program series in her region. Since her diagnosis of MS in 1998 Charmaine worked to educate raise awareness and offer support to those affected by MS in the Chicago area. For more information about Charmaine please see page 39 of the Fall 2015 issue of MSFocus magazine. 4 Sue West Bronx MS Support Group leader saw engaging in creative activities as a constructive and stimulating way of coping with MS and began to organize them as part of hersupportgroupmeetings. She wanted to give her members an opportunity to absorb themselves in a positive and productive activity that has various added benefits. I also believe that the more one engages in activities that stimulate the mind the better it is for preventing cognitive decline she explains. With the help of the MSF Sue and her group have done journaling art therapy music therapy knitting crafts and a book club. Many of the activitiesservedasajumpingoffpointasmembers found an interest that they wanted to nurture in their personal time outside of the group. Members used journaling as a way to help them organize and process their thoughts and daily activities. Knitting and crocheting also sparked an ongoing interest for some members who would come in to group meetings with pictures of the blankets they had made at home. The groups experience with art therapy was particularly memorable for Sue. She explains Art therapy consisted of me buying individual portable canvas and paint sets. We also have a member who is a retired nursery school teacher and she made homemade play dough. Art therapy was hystericalwe laughed and laughed. Sue has found that it works better if she allows aninterestinhavingacreativemeetingtohappen organicallyinsteadofschedulingthemconsistently throughout the year. She then reminds members in advance if a creative meeting is coming up so that they can know what to expect and decide if they want to attend. Sue has also created her own tradition of using music to celebrate special times for the group. WhenthegroupmarksamilestoneIusuallymake a CD with songs and a document explaining why I chose each song and the connection I believe it has to our group and to the fight we encounter with MS. For instance the sixties song He Aint Heavy Hes my Brother is now our groups theme song. The members love the CDs and usually ask for more for their grown kids. Music is not the only creative tradition that is blended into Bronx MS Support Group meetings throughout the year. Sue explains Usually I open every meeting with a passage from a book I bought 30 years ago called One More Day Daily Meditations for People With Chronic Illness by Sefra Kobrin PitzeleShe has MS and there are 365 small positive vignettes about living with chronic illness. Sue notes that the book is out of print but you may be able to buy it used online fromAmazonorBarnesandNoble.Suecontinues I am always looking for something to inspire us to continue living positively and continue fighting Richard Cohen is a great journalist for people with MS. His essays are candid frank and funny. Being a support group leader has also proven to be a rewarding and creative activity itself as she says that the people she meets through the group always inspire her. Creative activities help enhance whatSueseesasthetruepurposeofasupportgroup. For me the purpose of a MS support group is firstandforemostsupport.Ourgroupisamixture of support fun laughter and friendship. Many of the members have become best friends outside the group which is wonderfulI always tell my group there is no criticism here no embarrassmentandnohidingcognitivedifficulties. Creativity Coping and MS Bronx MS Support Group Bronx N.Y. 5 This is a safe place we can be once a month and not feel different or embarrassed. This group must be peaceful and we must be respectful of each other. We can let our hair down and be who we are. Its okay to spill the coffee. The Bronx MS Support Group meets from 630 p.m.830p.m.onthesecondTuesdayofeachmonth at Calvary Hospital 1740 Eastchester Road Bronx NY 10461. Please contact Sue at 718-792-3492 or msmeetmac.com for more information. MS Cartoon Caption Contest Winners In our last issue we asked you to help us caption the featured cartoon by drawing upon your MS experiences and insights. In order to be considered captions needed to provide an original explanation for the cartoon be clever and concise 30 words or less and relate to living with MS. Congratulations to our winners whose captions appear below. Special congratulations to Rhonda Swieder of New Castle Del. whose name was chosen in a random drawing of our winning entries to receive a 25 gift card. Thank you to all of our participants for submitting your witty humorous and creative captions. We loved reading them Im not trying to kick you my leg is spasming. George Batinovich Tucson Ariz. I only have 32 lesions in my brain. How many do you have Cheryl M. Dean Harrisonburg Va. I sure hope they come back soon to collect this urine sample Jack Sherman Northport N.Y Woman Im having an MS moment. Why are we at my doctors office Man To talk to him about your memory loss. Rhonda Swieder New Castle Del. Waiting on this couch one hour for your appointment Dont complain Ive been sitting here for two years waiting for a diagnosis. Lorraine Rosenblatt Oakland Calif. Whether youre interested in engaging in some of these activities as an individual or as a support group the links below provide a great deal of inspiration and serve as helpful starting points. InterestedinjournalingVisit httpjournalingprompts.com and hover over the colorful asterisks by each day of the week for journal writing prompts. Theres a few hundred ideas in total. InterestedinarttherapyideasVisithttpintuitivecreativity.typepad.comexpressiveartinspirations 100-art-therapy-exercises.html or Google 100 Art Therapy Exercises and the listed link should be the top hit. Illustration by Joseph Trevor Santeiro 6 MS Victories and Resolutions Contest The tradition of creating New Years resolutions is something familiar to most of us. People all over the world make promises to themselves to change or make something better on the first day of the New Year. If you can think of ways to live better with MS next year tell us about it here What about this years victories We encourage the idea of celebrating all of our victories no matter how small they may seem. If you were able to do certain things or experience certain things during the past year that gave you joy or a sense of accomplishment celebrate them here To participate in our latest contest use your insight and creativity to help us compose a master list of MS Victories and Resolutions for 2015-2016. Heres how MS Resolutions for the New Year Reflect upon the past year and compose a list of MS resolutions for next year. MS resolutions are promises you would like to make to yourself to make 2016 a better year of living with MS. For most of us theres always room for improvement and that is something to celebrate too. MS Victories from This Year Reflect upon the past year and compose a list of MS victories. MS victories are accomplishments of yours from 2015 that illustrate your ability to live well with MS. These accomplishments can be anything from positive moments from your everyday life to big achievements that youve been working on for a while. Feel free to submit as many victories or resolutions as youd like. Bonus points to those who submit both MS victories and MS resolutions Well feature our favorite submissions in the next issue and one lucky winner will be chosen to receive a 25 gift card. Submit your victories and resolutions to EmpowerSource Support Group News 6520 N. Andrews Ave. Fort Lauderdale FL 33309 or supportgroupsmsfocus.org no later than Nov. 25. 7 Try This Support Group Meeting Tip The holiday season can be a difficult and stressful time for many people with MS. With that in mind we reached out to our affiliated support group leaders to see what tips and tricks they had to share about handling stress and infusing fun into support group meetings during the holidays. Even if youre not currently in a support group you can still implement some of these ideas into your personal holiday routine. Use gift bags instead of wrapping paper for any presents you plan on giving. Gift bags make for a great presentation but require much less effort than wrapping a gift yourself. Many group leaders suggested exclusively shopping online for gifts. You wont have to deal with crowds or long distances and you can do it at your convenience. Searching is also easier as you simply type in the kind of gift you are looking for and then see where you can buy it online. Buy gift cards. You might feel like they arent as personal but if you know what stores the recipient likes or if you choose a store that almost anybody would be able to shop at the gift will be well- received.Therecipientcanbuywhatheorshewants and you dont have to deal with the difficulty of or pressure to find the perfect gift. Have a holiday party with your support group. We believe that one of the reasons to be in a support group is to have fun and a party certainly fitsthebill.ManygroupshavepartiesinDecember orgoouttoaholidaydinnertogether.Partiesoften includefoodgamescraftsgoodybagsandmusic. Hold a white elephant gift exchange. Each participant brings a wrapped gift 5 or less and places them in one area of the room. The first participant goes to the gift pile and takes a gift to open. On all other turns each participant can choose to open a new gift or steal someone elses gift. A person whose gift is stolen can then open a new gift or steal someone elses. Delegate specific tasks. Pick family friends or group members who are committed to helping and give them specific jobs to do to help with holiday preparations. Use your support system instead of trying to do it all on your own. UseyourOctoberorNovembergroupmeeting to discuss tips for handling holiday stress. Invite group members to contribute their ideas and strategies and come up with a list of tips that everyone can use and reference. Do something charitable. Helping others often lifts our own spirits. Some examples given to us by support groups included donating gifts to the Toys for Tots program and collecting nonperishables for a food pantry. Interested in more tips on handling stress and enjoying the holiday season Be sure to check out the Fall 2015 issue of MSFocus magazine which features various articles about the holidays A great big thank you goes out to the following groupleadersforcontributingtheideasfeaturedhere Cecile Looney Dee Walter Mary Grunewald Denise Franklin Suzanne OConnell and Juanita Guillespie Sharon David Ann Jones Susie Silver Phyllis Jacks Pam Secrist Peggy Johnson Karen Hart Rita Shapiola Tina Stitt Ron Sabellico Sandra Novak Manoj and Annie Joseph and Cindi Barrett. 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.