Page 1
Page 2
Page 3
Page 4
Page 5
Page 6
Page 7
Page 8
EmpowerSource Support Group News is an informational newsletter provided by the Multiple Sclerosis Foundation. Its purpose is to recognize the vital role of support groups in motivating educating and empowering all those whose lives are affected by MS. Free subscriptions are available upon request. Volume XIV Issue 2 Spring 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 AsmostofyouknowMarchwasNationalMultipleSclerosis EducationandAwarenessMonth.Thisyearourthemefocused on grassroots MS advocacy and was anchored in the belief that each of us has the power to be an advocate on behalf of people with MS in our communities. Id like to share some of the sentiments from MSFs advocacy presentations with a twist to address your role as a reader of this publication. Theres a good chance that youve never really thought about being an advocate or have felt that it wasnt really that important. You might find yourself thinking that there are not any issues affecting you now but re- member one day there might be. Or if you are the loved one of someone with MS maybe these issues wont ever affect you directly but they might affect your spouse your parent or someone you care about. And the truth is because we are all connected and all members of this MS community in some way and you are or you wouldnt be reading this newsletter we will all be affected in some way some day. All those affected by MS need a voice because there are decisions being made today that will affect our lives and we cant sit back and let these things occur without having a seat at that table. You do have the power to make yourself a community. The purpose of EmpowerSource is to connect you with the activities and ideas of other people with MS from around the country. Email the MSF at supportgroupsmsfocus.org with your own ideas and reach out to the people you read about within these pages. As individuals we are small and our voices tiny but when we join together our voices become united and strong. Sincerely Alissa Ayden Support Groups and Outreach Manager NLetter From the Manager NEmpowerment Through Education Warner Robins MS Support Group NSpot the Snowmen Contest Winners NStories and Faces of MS Talking to Inspire People MS Support Group NMSFocus Radio NMS Haiku Contest NSupport Group Tip MSF National Headquarters MULTIPLE SCLEROSIS FOUNDATION SUPPORT GROUP NEWS In This Issue 6520 N.Andrews Ave. Ft. Lauderdale FL 33309 888-MSFOCUS 673-6287 supportmsfocus.org One of the best reasons to connect with other people in your local MS community is to share information and help educate each other about a variety of issues. Often youll want to discuss topics directly related to MS. However there are also topics that are not directly related to MS that can certainly improve our lives if we learn more about them. Support Group Leader Phyllis Jacks felt that learning how to choose trustworthy businesses in the marketplace and how to avoid scams were things that she wanted her support group members to know more about. Phyllis explained her reasoning In todays world there is a continuing rise in fraud and scams. As the leader of the Warner Robins MS Support Group I felt that our members would benefit from education on consumer safety in order to be able to choose trustworthy businesses and avoid investment fraud as many of us live with challenging finances due to our disability. Phyllis invited Jason Blankenship Director of Business Services for the Central Georgia Better Business Bureau to speak at one of her support group meetings. Each attendee was given the following a copy of the publication Fighting Fraud 101 Smart Tips for Investors a copy of the DVD Trick of the Trade Outsmarting Investment Fraud and the latest Consumer Resource Guide of accredited businesses in the area. Phyllis said We learned that the isolated frail and gullible were not the main targets of fraudbutinsteadtheeducatedopenadventurous those who desire to do better financially or those who have suffered a setback or illness. Anyone can be a victim of fraud. Surprisingly in our area roofing contractors and mailed checks for deposit were the top complaints. Here are some of the other helpful notes of caution Phyllis and her members learned Be wary about people coming to your home to offer services or sell products. Watch for state- ments such as Only two left Today only and Your friends have done this. Dont open other browser windows while online banking. Change your passwords to phrases do not use pet names family names or birthdays. Be careful and destroy all mail that contains personal information. Dont fall for deposit this check scams. Most will ask you to deposit a check and then send a fee to a P.O. Box. Your bank will only discover the check is not cashable after you have sent off your money which will then be lost forever. Fraudsters are able to change the number that shows up on your caller ID. If a family member calls asking for money Empowerment Through Education Warner Robins MS Support Group Warner Robins Ga. 2 3 Spot the Snowmen Contest Winners Spring is here and the 17 sneaky snowmen hidden within the pages of our last issue have melted away We would like to congratulate our Spot the Snowmen contest winners. Winning entries had to provide both the correct number and locations of the snowmen. Three winners were selected in a random drawing of the correct entries and will receive 25 gift cards. Our winners are Abeir Alqadi of Saginaw Mich. Sherrill Derrenberger of Sarasota Fla. Mary Helen Walsh of West Carrollton Ohio Congratulations also go out to all those who submitted the other correct entries Kay Berry Eugenia Bobek Stephanie Cadigan Andrea Corriveau Terri Cramton Valerie Driscoll-Kirk Maggie Gaines Peggy Johnson Kelly Keys Vanja Lavoie Brandy Meadows Rebecca Milcarek Suzanne Monteiro Steve Rizzo Barry Turp Pamela Whiteside Donald and Linda Wigle Joanne Williams A great big thank you to all of our participants we love hearing from you because of an emergency always ask personal questions that only he or she would know and treat statements such as Donttellanyonewith skepticism. Be cognizant of the information you put on- line such as on Facebook as this information can be publicly obtained to use in scams. Note that the IRS never calls about payments needed but instead always sends letters. Everyone who attended came away with a great deal of information to make future credible business dealings and investments said Phyllis. Mr. Blankenship stated that the Better Business Bureau was in place to assist us and to always remember If it looks too good to be true it probably is Interested in learning more Review the same materials Phyllis and her group members received at www.saveandinvest.org and www.bbb.org. The Warner Robins MS Support Group meets on the second Tuesday of the month at 630 p.m. at Houston Medical Center New North Tower Lower Level Room 2 1601 Watson Blvd. Warner Robins GA 31093. Please contact Phyllis at 478-397-8145 or pljacks55gmail.com for more information. Stories and Faces of MS Talking to Inspire People MS Support Group Vero Beach Fla. For some time Jannette Scott had a vision for a local support group that would encourage and inspire the Vero Beach MS community. Jannette was finally able to realize that vision this year with the help of the Multiple Sclerosis Foundation. She decided to call her group Talking toInspirePeopleassherecognizedtheimportance of in her words just having someone to talk to. While meetings are most certainly designed to impart knowledge and information Jannette works to ensure that each meeting allows mem- bers to meet others that understand what they are going through. This means carving out enough time for each member to speak during the meeting creating space for socialization be- fore and after meetings and forging a general sense of community among those who attend. However Jannette wanted to do more. She wanted to think of a way to bring together all people with MS as well as people without MS in Vero Beach. Jannette and her group had a brainstorming session and came up with an MS art and awareness project called Faces of MS. The Faces project consists of a publicly placed collection of photos of people with MS accom- panied by their MS stories to raise awareness amongst the general public. As we all know there are many invisible and often debilitating symptoms that come along with having MS. These kinds of symptoms can make it difficult for others to understand how much we may be suffering as evidenced by that often heard refrain But you look so good Things are complicated further by the fact that MS doesnt affect any two people the same way and judging someones MS based on its appearance does not even begin to tell the full story. There are in fact many faces of MS and this is the point Jannette and her group members wanted to express to their community. She explains We are the faces of MS and MS isnt what it looks like. Whether youre a member of a support group or an individual with MS you too can implement a Faces of MS project in your community. Heres how Assemble the necessary supplies. Youll need a display board glue a pair of scissors access to a printer to print photos and text general information about MS and any other craft items to help make your board eye-catching and fun. Start with yourself. Take a picture of yourself and write a few sentences about your experience with MS. Think about what you would want other people to know about you and your story before they judge you based on your appearance or the fact that you have MS. 4 5 Find other people with MS to join you. Ask your support group members or your friends with MS to send you a picture and their thoughts about what living with MS is like. Explain the overall goals of the project and that this information will be public. Assemble general information about MS. Your Faces of MS board should also include some easy to understand basics about MS as many members of the general public may not know anything about the disease. You can order materials from the MSF about MS basics including our fact sheet MS at a Glance and our color laminated Patient Information Guide or go to the MSFs website www.msfocus.org and click on Learn About MS for all sorts of help- ful information. Reach out to local businesses and centers. Explain your project and that youd like to post your Faces of MS board on their wall for a month to raise awareness about the disease and break through MS-related stigma in your community. Good places to start might be churches community centers nonprofits locally owned restaurants and coffee shops. The Talking to Inspire People MS Support Group meets on the third Thursday of each month at 6 p.m. at Palm Garden of Vero Beach 1744 37th St. Vero Beach FL 32960. Please contact Jannette at 772-410-7390 or talking2inspirepeoplegmail.com for more information. Did you know the Multiple Sclerosis Foundation has an online radio station The purpose of MSFocus Radio is to connect all members of the MS community to critical and timely information about multiple sclerosis. It creates community by sharing interviews teleconferences audiobooks and articles from MSFocus magazine. We also take requests. This is our community radio station so please let your voice be heard The station is seeking narratives for its Voices segment. You should be able to tell your story clearly and succinctly in less than eight minutes. Segments are recorded by phone by appointment. Please email a brief outline or description of the story to Kasey Minnis at kaseymsfocus.org for consideration. MSFocus Radio is available around the world via the MSFocus Radio live streaming apps on Google Play and the Apple Store. You can also find us on TuneIn.com and RadioLoyalty.com. SearchforMSFocusorMSFocusRadio.Feelfreetolinkthroughourwebsitewww.msfocus.org. For on-demand content visit www.SoundCloud.comms-focus or search MSFocus Radio. 6 Haiku is a form of poetry that consists of a verse of 17 syllables split up into three lines as follows Line One 5 Syllables Line Two 7 Syllables Line Three 5 Syllables You can get creative with punctuation and capitalization and your poem doesnt have to rhyme however it does have to be an original creation Here is an example The sun shines brightly Its rays dance upon my skin And warmth surrounds me Analyze The sun shines bright ly 5 Its rays dance up on my skin 7 And warmth surr ounds me 5 Heres our challenge to you Tell us about what life with MS is like for you in the form of a haiku Your haiku must fall into one of the following three categories related to living with MS Positive thinking and humor Were all familiar with the idea that attitude is everything. How do you put a positive spin on living with MS and its challenges How do you use laughter as your best medicine in your journey through life with MS MS-free zone Rosalind C. Kalb PhD who developed the concept of the MS-free zone explains it as anything that allows a person to find respite however momentary from the intrusion of MS in his or her life. What or who serves as your personal MS-free zone What does it feel like when you are in that MS-free space Catharsis When was the last time you truly allowed yourself to express the pain and emotions that come from living with MS Allow yourself that release here. What thoughts or feelings about living with MS have you wanted to get off your chest Ask friends and family to help and feel free to send in more than one entry. Bonus points to those who submit a haiku for each category Remember to make sure all entries follow the 5-7-5 syllable rule. Contest winners will see their name and haiku featured in our next issue and a random drawing of the winning entries will be chosen to receive a 25 gift card Submit your MS haiku to EmpowerSource Support Group News 6520 N. Andrews Ave. Fort Lauderdale FL 33309. All entries must be postmarked no later than May 20. Happy writing 7 This support group meeting tip comes to you directly from the MSFs national headquarters. Do you ever have trouble coming up with an interesting topic for your support group meetings The MSF is here to help Did you know that the MSF has created 100 uniqueinformationalpublicationsthatareavailable toyouanytimefreeofcharge TheMSFsMedical Advisory Board and Editorial Committee have produced these wonderful educational materials over the years to ensure that you have the most important MS-related information right at your fingertips at all times. We encourage MSF-affiliated support group leaders to place educational materials orders throughout the year to hand out at their meetings. Not sure what topic you should pick for your next meeting Use one of the MSFs publications to guide you. For example if you request copies of the MSFs booklet Nutrition and MS you can pass one out to each support group member at your next meeting and use it to spark discussion and inform your group. If youve ordered materials in years past but havent ordered in a while take a look at the fact sheets we have either created or updated within the last year including All About Tremor Diseases that Mimic MS Dysphagia and MS MS Counts at Work Advocacy on the Job MS and Migraine and Stress and MS. MSF fact sheets cover a wide variety of topics ensuring that there is something to interest each and every member. Topics include health and wellness symptoms medical resources assistive technology medication information caregiving and families legal insurance and financial issues and gender-based materials for women and men. Even if you are not a member of a support group as an individual with MS you can still order informational materials from the MSF Call the MSFs National Toll-Free Helpline at 888-MSFOCUS 673-6287 or email supportgroupsmsfocus.org and ask for a Publications Request Form to place your order today Try This Support Group Meeting Tip Courtesy of MSF 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.