Programs and Services Comprehensive Resource Guide We re Here to Help At the National MS Society, Greater Northwest Chapter, we know that multiple sclerosis doesn t wait for a convenient moment, so we don t want you to wait for assistance. We understand how much you appreciate personalized help that comes at the right time. This guide will help you get support when you need it. What will I find? In these pages, you ll find information about the programs, resources, opportunities and services available to anyone affected by MS. We offer in-person support, or resources you can access from the comfort of your home. Find ways to connect with others, and make a difference in your community. Who is it for? Whether you were recently diagnosed, have been living with the disease for years, or are the friend or family member of someone living with MS, we invite you to explore this guide to find out how to get the answers you need. Moving forward Once you ve read through this guide, store it somewhere for safekeeping, and refer back to it as your needs change over time. If you don t see a topic covered, contact us about it. There is no question too large or small. Follow the orange arrows throughout pointing you to some inspiration on what MS equals to those striving to live their best life. Icon Key Look for these icons to help identify the resources you need. They will correspond to the same sections in the Programs and Services menu on the Chapter website: MSnorthwest.org Get Help Get Answers Make Connections For Family and Friends For Healthcare Professionals For alexis, the Society is there for me when I need them
Take the First Step It s as easy as a phone call. There is a sea of information out there, and it can be overwhelming to sort through it all to find the right resources for your situation. That s why you can count on the National MS Society, Greater Northwest Chapter to be your partner in facing MS. Our MS Navigators are highly skilled professionals, who act as your personal guide with access to up-to-date local and national resources and referrals. Just contact an MS Navigator, who will help you find what you need, when you need it. Whether you are living with MS, a family member or are concerned about someone with MS, get started. Call 1-800-344-4867 or visit MSnorthwest.org For Jason, taking charge of my health 2
For tracey, MS= a chapter in my book, but not my story Reliable Resources and Referrals Your guide on the road to a full life. Living your best life with MS means that you will need to spend more time identifying both your immediate and long-term needs, researching the best options and making an informed decision. The goal here is to support your well-being at all times, but that can seem impossible if you re wrestling with confusion. It doesn t have to be this way simply call us and we ll get you back on the path to peace-of-mind. An MS Navigator can refer you to a number of different professional services in your local community and that s just for starters. We provide at least three reliable referrals so that you always have a personal choice to make. Our pool of resources is ever-growing. Tell us what you need or share your favorite local professional service to add to our list. Our Chapter has referrals for: Neurologists and other physicians Professional counselors and support groups for individuals or family members MS trained fitness and exercise specialists Massage therapists and other natural health services In-home services to support your independence Respite and emotional support services for caregivers Expert guidance on Social Security Disability Insurance, health insurance or other benefits Financial planners and legal experts to plan for your future Employment specialists to meet workplace challenges Ramps, scooters and other mobility equipment Call to get the resources you need at MSnorthwest.org or call 1-800-344-4867 to connect to an MS Navigator. 3
Get Answers, Get Help For Aaron, learning to work with a new normal Living and Learning with MS Educational Opportunities Knowledge truly is power. The more you know, the more prepared you are to handle the uncertainty of living with MS. Join any of our Chapter s educational programs and you ll find that some useful and relevant information on how to approach these unknowns can go a long way towards alleviating your frustrations. Whether it s learning how to apply meaningful communication techniques with a loved one, gaining a better understanding of what the science behind the latest research actually means or simply brushing up on the latest therapies we have something for everyone. Tap into these valuable opportunities to get answers to your burning questions, meet others like you and gain skills from top MS professionals in our Chapter community and beyond. The only risk you have is to learn something new! Feedback from people living with MS helps us to create relevant and meaningful programs, so please let us know what you would like to learn more about. Teleconferences Learn from the comfort of your own home on the phone through toll-free teleconferences offered yearround on a variety of topics. In Person Attend a workshop, conference or social get-together in your local community to meet people and MS experts face to face. Online Participate in classes online, watch videos and live webcasts, read one of the many available publications, or connect with resources and people through social networks, like Facebook, MSconnection.org and other online forums. 4 Visit the online calendar of events: calendar.msnorthwest.org Look for periodic event flyers in the mail and RSVP to reserve your spot. Call 1-800-344-4867
What some have said is the best thing about their self-help group: The people they are friendly and accepting. The companionship and camaraderie participating, socializing. Problem-solving, helping others, connecting people; the affirming, positive attitude. What some have said about Someone to Listen: My peer helped me understand that I m not the only one with MS. It s so helpful to talk with someone else who s been on MS medications. The peer support program provided a wonderful lifeline of support in the comfort of my own home. It felt good getting a phone call at home from someone else who understands MS because they are living with it, too. Making Meaningful Connections Connecting with others who have been there can make all the difference. The Chapter provides self-help groups and peer support programs, so you can expand your circle of support to include others you can relate to. Share your story in confidence to discover how others are successfully managing the challenges and emotional ups and downs of this unpredictable disease. Self-Help Groups Our Chapter self-help groups provide a safe, friendly atmosphere to meet others with MS. More than 40 groups in the Greater Northwest Chapter area meet on a regular basis, including a stay at home telephone support group. Care partners and other family members can benefit, as well. We can even help you start a group if there isn t one near you or that fits into your schedule. Learn more at selfhelpgroups.msnorthwest. org. Peer Support Someone to Listen peer support program matches you with trained volunteers, who offer regularly scheduled, ongoing support over the phone to help you set goals and learn new coping skills. Join or start a group or connect with a peer today. MSnorthwest.org or 1-800-344-4867 Connect through the online community at MSconnection.org. For Shelley, someone who understands 5
Get Answers, Get Help cont d Financial Assistance Because MS is expensive. The cost of living with MS can be a tremendous stress. If you are struggling to pay for something that will help you maintain your independence, safety, health, and overall quality of life, the Chapter can work with you to get what you need. A quick and easy application is all we need to get the ball rolling and help with completing the form is always available if needed. Not only does the Chapter provide some financial grants, but we can help do the ground work to leverage other community resources. We can also help you create a sustainable financial plan for future needs, so you can rest easier. We may be able to help with: The cost of disease modifying therapies Respite services such as short-term home care Durable medical equipment and air conditioners Accessibility modifications to homes or vehicles, such as ramps and hand controls Critical short-term needs such as rent or utilities Health and wellness support such as fitness classes, gym memberships and exercise equipment Counseling co-pay assistance for individuals, couples and families Whatever it may be, don t hesitate in making your request Paying for College Because of the rising costs of tuition, and the financial strain MS puts on a family, the National MS Society created a scholarship program to assist highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. Annual scholarships range between $1,500 and $3,000 for first-time, postsecondary students and can be renewed up to three years. Recipients are selected based on academic performance, financial need, volunteer and extracurricular activities, and essays they write about the impact MS has had on their lives. Don t let MS stand in the way of your education. It s never too early to start thinking ahead as applications are due in mid-january each year. 6 For Imani, making adjustments to live my best life
For Susan, knowing my rights and how to move forward Self-Advocacy and Care Management Getting what you need, when you need it. Self-Advocacy Nobody knows you better than you do. We want to give you the tools, knowledge and confidence to help you make decisions concerning your needs, your opportunities and your rights. Life with MS is different for every person, every day, but here are a few examples of information an MS Navigator can provide so you can be your best advocate: What you need to know when newly diagnosed Treatment options and symptom management strategies Accessing optimal health care Meeting workplace challenges Understanding benefits such as health insurance Handling financial challenges and planning for the future Facing challenges with a caregiver Finding help in the home Managing life changes Locating resources in your community Care Management Confused, overwhelmed, uncertain or stuck? A knowledgeable and compassionate social worker will work with you over the phone and in your home to more fully understand your situation, determine your needs and create a personalized plan. Our Care Management Program is designed to help you connect with the right care, at the right time, and even if you have no idea yet what that may be. Care Manager Sarah Winter, who has a master s degree in social work, says: The only agenda here is your own: Care Management is about identifying the challenges and issues you are facing at this time. We ll partner together to research, problem-solve, and identify resources that can help you meet your goals and improve your situation. I feel it is a privilege to be invited to share this part of your journey, and I appreciate the opportunity to learn and work together. To apply for financial assistance or a scholarship, and to learn more about self-advocacy or care management, call 1-800-344-4867 or visit MSnorthwest.org. 7
Get Answers, Get Help cont d Exciting Developments in Research Just as MS is a complex disease, so is the National MS Society s method for developing solutions. With the MS NOW research campaign, we are committed to three goals: Stopping disease progression Restoring function Ending MS forever Through our comprehensive approach to research and treatment, we are able to support and propel the most encouraging therapies from their start in the lab all the way to clinical trials. We pursue all promising avenues that can impact those living with multiple sclerosis, and we re doing it now. Get up to date on the latest research, learn how to volunteer for a clinical trial, and access the MS Clinical Care Network by visiting MSnorthwest.org or by calling 1-800-344-4867. Participating in Clinical Trials Clinical trials are scientific studies designed to test the safety and efficacy of new treatments for diseases. Many people living with MS who are drawn to exciting leads in research look at participating in these clinical trials as an opportunity to help move forward potential new treatments for MS. These people often receive the benefit of cutting edge care and the sense of satisfaction knowing their time invested could lead to better, more innovative therapies for people living with MS. Partnering with Professionals It is critical that medical professionals have access to the most recent and accurate research, treatment options and data about MS available. We make it a priority to partner with and educate healthcare professionals, including training for long-term care facility staff. Enhancing their expertise improves access and quality of care for people with MS. The Society s MS Clinical Care Network, which houses the most comprehensive library of MS information in the world, provides a variety of information and consultation services. 8 For Rick, no opportunity wasted
Get Involved For Lisa, Be an MS Activist using my voice when it matters most Your elected officials can be powerful allies that vote on issues that affect your quality of life and your health through their decisions on public policies and budgets. At the Greater Northwest Chapter, we take an active role in shaping legislation and keeping you informed on issues that need your voice. As members of their community, your legislators care most about what you think. Successful change is only possible if you take the opportunity to tell them what matters to you. Issues we re focused on that may affect you: Health care reform Disability rights and accessibility Long-term care resources Access to quality health care services Increased funding for MS research Accessible, affordable health insurance No one knows your story better than you do. Submit yours to the StoryBank at MSnorthwest.org. To learn more about volunteering as an MS Activist visit: AKmovesMS.org MTmovesMS.org WAmovesMS.org or call 1-800-344-4867. There are a number of easy ways to get involved. Choose one or all and make a difference in your own life and for others in your community living with multiple sclerosis. Email Your Elected Officials Sign up for MS Action Alerts to receive critical updates and immediate calls to action on legislation in your state and on the federal level. Meet with Your Elected Officials We will give you tools and tips for meeting in person with your elected officials. Also join our annual Day of Activism to be part of the grassroots force in your state capitol. Volunteer for a Government Relations Committee Be a leader in your community. Committee members in Alaska, Montana and Washington determine legislative priorities for each of their states. Tell Us Your Story Every person, family and caregiver touched by MS has a unique and powerful story that can educate elected officials and the media on what it s like to live with MS. Submit your story through our online StoryBank and make your voice count for something good. 9
Get Involved cont d For Katie, a community of friends and family Walk MS and Bike MS You don t have to walk or bike. Just be there. All you need is a desire to be part of a powerful movement. One that is made up of people just like you who are making a profound difference together and individually. At Walk MS and Bike MS, we share our experiences and connect our stories as one community with the purpose of raising awareness around the uncertainty of living with MS. There is a place for everyone, for the newly diagnosed mom, the career professional, the adventurer, the father or daughter and for all the others who must redefine their meaning of life with multiple sclerosis. Together, we are working to create a world free of MS. Invite your friends and family to join you at Walk MS or Bike MS, and inspire others with your commitment to doing something about MS now. Just be there! MS Champions Our MS Champions programs are a way to recognize and honor individuals living with MS at Walk MS and Bike MS. As an MS Champion, your role is simple yet powerful. Sign bandanas for the riders at Bike MS, chat with people throughout the events, and welcome cyclists and walkers at the finish line. Top 5 Reasons to Become an MS Champion 1. Support those who are supporting you 2. Get involved with the Chapter 3. Share your story 4. Connect with others living with MS 5. Celebrate the mission of the Society and how far we ve come together Register, volunteer or sign up as an MS Champion for Walk MS at walkmsnorthwest.org and for Bike MS at bikemsnorthwest.org or call 1-800-344-4867. 10
Get Connected Volunteer By contributing your time, resources, knowledge, skills or leadership as a volunteer, you infuse the National MS Society with energy and passion that moves us closer to achieving a world free of multiple sclerosis. Volunteers help with everything from Chapter mailings or events, to participating on committees and spreading public awareness about MS. All kinds of skills are needed, and you can volunteer from home, via phone or internet, in an office or on-site at an event. The only requirements are the willingness to help and a little bit of time. Share your Story Think back to the time before you were diagnosed with multiple sclerosis. Learn more about volunteering your time or talent with the Society, or submit your story to our online StoryBank at MSnorthwest.org or call 1-800-344-4867. Did you know what MS even stood for? Did you understand the effect it has on the mind and body? What do you wish that you would have known? Now imagine how sharing your personal and unique story could help others understand the unpredictable and sometimes invisible challenges you face. Think how your experience of overcoming challenges and moving forward each day could give hope to someone else living with this disease. Through the simple act of sharing our stories we are more engaged and connected as a growing community of supporters looking out for each other. Plus, sharing just feels good! It helps to lighten our load, regain our patience after a hard day or learn about what others are doing that is working for them. Share your story to help raise awareness, engage others in the MS movement, give a face to our advocacy efforts, and provide inspiration and encouragement. Whatever your reason is, your voice and your story matter and we are listening. For Ginny, MS= connecting our stories 11
Don t Wait to Take Action Help is Here For Eric, MS= a community that understands you Whether you ve just been diagnosed or have been living with MS for years, it s never too early or late to set goals and take action to achieve them. The best place to start is with the programs, services and resources found at the National MS Society, Greater Northwest Chapter. It s a place where people understand, share in your struggles and where together we can move forward. It s never too late to get started or connected. We are just a phone call away. Call 1-800-344-4867, option 1 Visit the Chapter Website and calendar of events webpage at MSnorthwest.org. Subscribe to the Chapter s free quarterly MS Connection newsletter with local, state and national news at nationalmssociety.org/msconnect Join our online community at facebook.com/msnorthwest.org Follow the Society s blog for real and relevant discussions about MS at blog.nationalmssociety.org Sign up to receive legislative Action Alerts at nationalmssociety.org/msactivist Greater Northwest Chapter Regional Office 192 Nickerson Street, Suite 100 Seattle, Washington 98109 1-800-344-4867 MSnorthwest.org The National MS Society, Greater Northwest Chapter educates, inspires and empowers those affected by multiple sclerosis. We create innovative programs to meet the needs of people with MS and their families, host exciting fundraising events to give supporters a meaningful role in the MS movement, and fund cutting-edge research into treatments and a cure. With a passion for bringing about a world free of MS, we help everyone affected by the disease to live richer, healthier, more independent lives. Headquartered in Seattle with offices in Anchorage and Billings, the Chapter serves over 12,000 people living with MS and more than 72,000 others including friends, caregivers and health care professionals in Alaska, Montana, Central and Western Washington. We are an affiliate of the National MS Society, which was founded in 1946. If You or Someone You Know Has MS 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. Talk to your health care professional or contact the National MS Society at 1-800-344-4867 or nationalmssociety.org to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. v2013.1