Free From Falls
New 8-Week Fall Prevention Program
Studies indicate that falls are quite common among people with MS and are often associated with injuries and negative impact on quality of life.
This program is designed for people with MS who are ambulatory but who may be at risk for falling. You will learn about fall risks, tips and strategies to reduce risk for falling, and exercises to enhance balance and safety. A supportive group atmosphere and expert instructors in the field of rehabilitation, health and wellness will help each participant develop a personal plan to maximize safety. Each week’s 2-hour program will have two parts; a discussion component focused on awareness of issues related to falls and an exercise component directed to improving postural alignment, balance, endurance and mobility. Through this FREE course, participants will:
- Increase awareness of the prevalence of falls among people with MS and the risk factors that may contribute to falls.
- Identify strategies they can employ to prevent falls and develop a fall prevention action plan.
- Engage in and develop a home fitness plan that addresses balance, endurance, and strength, aimed at reducing fall risk.
- Increase their confidence in minimizing fall risk and in managing falls if they do occur.
- Identify additional community resources to implement a fall prevention action plan.
8 Week Course Thursdays, March 29-May 17
There is no charge for this program, but participants must commit to attending all 8 sessions.
10 a.m. - Noon. Refreshments provided.
Boston University, Commonwealth Ave, Boston MA
Eligibility: The target group for this program is people with MS who are at the highest risk of falls and the most likely to be able to improve their mobilit y- those who are ambulatory, possibly needing the assistance of a cane or crutch, but not a walker or wheelchair.
For an application, contact Sarah MacIsaac at 800-344-4867, option 2 or sarah.macisaac@nmss.org.
Online Peer Support
Do you currently volunteer with us in a peer support program, or would you like to learn how to do so? Are you interested in participating in a new nationwide peer support program? If yes, read on …
The Society’s Online Peer Connections program is currently seeking people with MS or family members of people with MS who are interested in becoming peer support volunteers. As a volunteer, your profile would be included in an online database, searchable by demographics such as age or mobility status. Once a person with MS selects you as their peer support person, you would then arrange to speak one-on-one either via email or telephone on an agreed-upon topic. All conversations are confidential.
The program begins this March. Visit www.nationalMSsociety.org/onlinepeerconnections, or contact Monica Aden, Online Peer Connections program coordinator, at 1-303-698-6100, ext. 15169, Monica.Aden@nmss.org to learn more.
Blog Opens Doors for MS Community
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Fatigue, isolation, doctor’s visits—and yes, sex with MS—are just a few of the topics covered in the Society’s new blog at blog.nationalMSsociety.org.
Not much is off-limits to Society bloggers and commenters. Instead, people with MS and MS specialists dig into very personal issues—and universal ones. “In these cyber pages, we intend to open up the doors which have long been closed (by society, by our families and—quite frankly— by many of us living with MS) to discussion,” wrote blogger Trevis Gleason on January 4. “To that end, I’d like to take this opportunity to ask you—the readers of The Unspeakable Bits —what topics you think are under discussed if not just plain ignored by the MS ‘authorities’ out there?”
There’s an APP for that!
Momentum Magazine
by the National MS Society
Momentum, the flagship magazine of the National MS Society, is the largest MS-related publication in the world. The quarterly magazine includes first-person stories by people living with MS, consumer reports, expert opinion from MS specialists, reports on current events, MS activism, and recent advances in MS research.
App Features:
- Current and past issues of Momentum absolutely free!
- Brilliant replica format, just like the print edition you know and love.
- Text-formatted articles designed for maximum mobile readability.
- Download each issue, and then return any time for offline reading.
- Search the archive of available issues.
- Bookmark your favorite articles.
- Share your comments with other readers.
This app includes issues dating back to Winter 2010-11. New issues will be available for download quarterly.
You’ll also receive real-time updates from Momentum: News Stories, Videos, Twitter updates. All in one app! It’s free and compatible with Android, iPhone, iPod touch, and iPad. Requires iOS 4.0 or later.
Dora Lipcon Lending Library
Minimizing Your Risk of Falls: A Guide for People with MS (Brochure): The Society’s new Client Educational brochure, in addition to the Free From Falls DVD, was created in order to increase awareness of fall risk factors, offer tips and strategies to minimize risk, and encourage participation in a fall prevention program.
Free From Falls (DVD): This DVD, in addition to the “Minimizing Your Risk of Falls” client educational brochure, was created in order to increase awareness of fall risk factors, offer tips and strategies to minimize risk, and encourage participation in a fall prevention program. The DVD is posted on the Society web-site and clients can contact the IRC to obtain their own copy.
(Please note: This DVD is a stand-alone awareness/educational tool and is not part of the 8-week Free From Falls curriculum).
Working for Me: Research in Understanding & Treating Progressive Multiple Sclerosis (2011). North American Education Program; United States MS Society & MS Society of Canada. This year’s program focuses on one of the most frustrating and elusive aspects of multiple sclerosis: the issue of progression. In the video portion of the program, scientists and clinicians discuss working on finding the answers to these and other questions about progressive MS. The program booklet provides information about studies that are completed or in process that add to the body of knowledge about the progressive nature of MS.
Multiple Sclerosis: The Questions You Have, the Answers You Need, 5th edition (2011). Kalb, R. The definitive guide for everyone concerned with the disease - those who have MS and those who share their lives with someone who has it. The new edition has been thoroughly revised and updated throughout. The book provides the most current information on multiple sclerosis including a review of the controversy surrounding CCVSI, discussion of the first two pills in development for the disease, new information on the drug Tysabri, emotional issues, and the family.
Accessible & Adapted Recreation
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Normally, MS is with me all the time, but what I found out was that while I am engaged in an activity, my mind is removed from my condition. Even when I am having a “bad” MS day (numb, burning feet or heavy, tired legs), my activity mentally removes me from my condition and for a while afterwards, I continue to feel better. -Chip, diagnosed 5 years ago |
 Chip on top of Wachusett |
Recreation and leisure time should be a part of everyon’e life. For those who are challenged by MS, though, recreational and leisure time can take a back seat to one’s everyday activities.
Recreation provides many benefits for people with MS. Studies and personal accounts tell us:
- It allows you to be active, meet new friends and have fun with your family.
- It is empowering.
- It helps you to discover new and different activities you like…. and are good at.
- It is a great stress reducer and can even help to relieve symptoms of anxiety and depression.
- It allows you an opportunity to laugh and feel joyful.
Would you like to know more about how to bring recreation back into your life? Check out: Live Fully, Live Well – A Wellness Program for People with MS and Their Support Partners. The fourth in a seven part series, this one-hour webinar will help you identify challenges, and provides resources to manage them. It also discusses adaptive ideas and methods with the goal of helping you open the door to include recreational activities and travel in your life.
Do you know of any organizations that offer accessible recreation?
Please contact us and help expand this exciting adventure!
Contact: sarah.macisaac@nmss.org
Program Highlights
Where is My Memory?
Cognitive Changes in MS Teleconference
This popular call attended by over 250 people discussed cognitive dysfunction in MS, personal accounts of life with cognitive issues, and strategies to manage cognitive changes. John DeLuca, PhD, Univ. of Medicine and Dentistry of New Jersey, outlined cognitive issues such as memory, information processing, executive functions and how cognitive symptoms relate to other aspects of MS. He spoke briefly about cognitive rehabilitation and cognitive reserve. Jeffrey Gingold, Person with MS and author of “Facing the Cognitive Challenges of Multiple Sclerosis” and “Mental Sharpening Stones”, spoke about how cognitive problems have affected his life
Employment Teleconferences:
A 21st Century Approach to Job Searching
Employment resource and business recruitment professionals, Lori Daly and Hilary Benoit, reviewed new and innovative strategies for getting the job you want. They shared a variety of websites and discussed how technology can work for you. Ms. Daly and Ms. Benoit also talked to the 130 attendees about networking and social media as a tool for job hunting.
Get Informed: Legal Protections in the Workplace
Guest speaker Eddie Whidden, Senior Consultant with the Job Accommodation Network (JAN) spoke to an audience of approximately 150 people. He provided much needed information about resources available through the Job Accommodation Network, disclosure, common symptom issues and accommodations specifically for people with MS.
Missed a call?
These teleconference recordings and other can be accessed through our Teleconference Series page or through the Dora Lipcon Lending Library either online or by calling 1-800-344-4867
Family Connections: You don’t know what you don’t know...”
When my mom was first diagnosed we did what most families do, we took it one day at a time. Diagnosed with Primary Progressive MS, we felt most fortunate when we could take it one week and even one month at a time. Most importantly, we – like all families living with MS – learned to live with uncertainty and adapted to new symptoms and new challenges as best we could. But when I think back to those early years now, I always think the same thing: “You don’t know what you don’t know.”
Kate Patton-Regal, on right, with her mother, Linda.
I still remember our first meeting with an MS professional. We were years into my mother’s diagnosis and facing difficult circumstances. At some point during that first conversation, my sister and I looked at each other, the same thought in our head. “You don’t know what you don’t know.” For over ten years now that moment has stayed with me.
Now, whenever I meet someone with whom I share that MS bond, I repeat those same words, you don’t know what you don’t know, and encourage them to seek the experience, expertise, and camaraderie of others – both those who have gone before (I can only hope my experience might benefit another family) and of the various MS professionals available. I say this to both those diagnosed with MS as well as those in the family of someone diagnosed with MS.
Nineteen years old when my mom was (finally) diagnosed and thirty four years old when we lost her, MS has been the center of my adulthood. Although not my illness, MS impacted our entire family and we each adopted different roles, each a critical piece of our family puzzle. I became the fundraiser – joining the Marathon Strides Against MS team, running 13 Boston Marathons while raising money for the Greater New England Chapter of the National MS Society. We knew my mom wouldn’t benefit from a cure, but we know our family will.
-Kate Patton-Regal,
Member, Board of Trustees
CAN DO
Four Days That Transform Lives
Imagine a program dedicated exclusively to helping you live your best life with MS. CAN DO is a personal and powerful multiple sclerosis program that addresses your unique physical, emotional, social, intellectual and spiritual needs and provides you with the knowledge, skills, support and confidence to transform challenges into possibilities. Our world-renowned CAN DO Program offers the industry’s most comprehensive view of multiple sclerosis, taking you on a profound exploration of your unique condition and empowering you with a whole person, whole health and whole community approach to living fully with MS.
Explore. Discover. Realize. Live.
Using a interdisciplinary team of nationally recognized professionals, this intensive four-day program goes well beyond traditional health and wellness programs by providing comprehensive assessments and education about MS – its effects, treatment options and lifestyle adaptation strategies. Through seminars, interactive workshops, support groups and goal setting, participants develop a personalized lifestyle plan, learning how to address lifestyle areas unique to them, including nutrition, exercise, rehabilitation, mobility, bladder/sexual function, psychological support, and ways to seek out and acquire needed resources. With a staff to participant ratio of 2:1, participants receive an unsurpassed level of personal attention and are able to speak with medical professionals in an intimate, unhurried environment that is rare in health care today.
Including Support Partners In The Journey
Spouses, family members or friends are encouraged and even expected to attend the CAN DO Program. Special sessions are devoted to this group to explore their needs, goals, concerns and challenges.
To bring a CAN DO Program to your community:
Maureen Martin, Director of Programs
800-367-3101ext. 1291 / mmartin@mscando.org
JUMPSTART
The Start of What Is Possible
Our one-day JUMPSTART Program is an interactive educational program in which you and your support partner gain the knowledge, skills and tools to adopt healthy lifestyle behaviors and actively co-manage your MS.
Offered at no charge in communities across the country, our JUMPSTART Program provides participants with an interactive exploration of health, wellness and lifestyle empowerment approaches and topics. The topics range from cognitive and fatigue issues, to goal setting, nutrition, exercise, emotional-well being and often includes programming specifically for support partners and their concerns.
Local JUMPSTART Programs are provided in collaboration with the Greater New England Chapter.
Program feedback showed that 97 percent of attendees reported they would recommend this program to friends, gaining new information they can use in their lives.
2012 dates & locations in our Chapter Area
- Norwood, MA – June 2
- Portland, ME – June 3
- Concord, NH – September 22
- Montpelier, VT – September 23
Watch your mailbox for more information and registration details.
To bring a JUMPSTART Program to your community:
Scott Cline, Programs Manager
800-367-3101 ext. 1280/ 970-926-1280
scline@mscando.org
Save the Date
Chapter Annual Meeting & Conference
Saturday October 20, 2012
This conference includes education seminars, the annual meeting of members, a research update, and a health, wellness, and resource EXPO.
- Maine – Civic Center, Augusta
- Massachusetts – DCU Center, Worcester
- New Hampshire – Executive Court, Manchester
- Vermont – The Essex, Essex
Society Workshops a Point of Connection
From the moment the doctor told me, “You have MS,” everything changed. I felt a wide range of emotions: relief (because I didn’t have a brain tumor), anger (although I wasn’t sure who to be angry at) and fear of the future. What was this disease, and how would it impact me and the people who were important to me? I had no idea what my new life would be like, or how to get started on it.
Like many people, I first turned to research. This was in 1997, before the Internet was in full swing (at least at my house). So I went to the library, trying to learn about MS. I had heard about the National MS Society, but for days I was hesitant to call the number. Finally, I made the call, which led to my second-most important discovery of the year: my chapter was about to begin a series of in-person workshops for people who had just been diagnosed with MS.
Each workshop featured a different guest speaker. On the first evening, a neurologist spoke in practical terms about the disease. Her presentation included a slideshow illustrating how white blood cells inexplicably start attacking the protective coating of the nerves (myelin sheaths). She had actually brought a ruptured electrical cord, exposing the frayed wires underneath. That simple prop was probably the most effective tool of my MS education. It helped me realize that if I’m having a hard time lifting my leg, it’s not because I’m lazy or weak-willed. It’s because of those well-meaning (but very misguided) white blood cells.
Afterward, the neurologist answered our questions about the day-to-day realities of living with MS. She also talked about some ongoing clinical trial studies and invited us to learn more about them. (I ended up participating in several such studies, all of which were very rewarding.)
Each workshop was similarly organized. A speaker would give a presentation and then answer questions. We were introduced to experts in medicine, mental health, yoga and nutrition. At some point each evening, we broke into small groups to discuss what we had learned. I remember that one of the most fun and empowering activities was learning how to get a good workout while sitting down. (Who knew?)
Throughout these programs, chapter staff told us about their services and resources, which included numerous opportunities to volunteer. I soon started volunteering and I haven’t stopped yet!
New frontiers
Of course, things have changed since 1997. While many chapters continue to offer in-person workshops similar to what I experienced, they have also begun exploring additional ways to help people newly diagnosed with MS connect to the Society—and to each other.
“Almost every home now has access to the Internet and that seems to be a primary source for information, especially for tech-savvy people,” noted Mary Roberts, associate vice president of the South Central Region. “So we are doing our research to find new and creative ways to reach people.”
Teleconferencing, videoconferencing and webcasts are a few options. “We plan to have a program in one site and broadcast that program to other sites across our region,” said Roberts. Some chapters are also trying out new formats for workshops, such as offering quarterly workshops with a nurse, or teaming up with an area MS center or university to provide workshops led by doctors.
Peer support programs are another way to connect. Anyone newly diagnosed can call 1-866-673-7436 to have a confidential telephone conversation with a peer with MS through the Society’s MSFriends program. Or they can visit www.nationalMSsociety.org/onlinepeerconnections to search through online profiles of trained peer support volunteers. Once matched, participants can connect confidentially and one-on-one via telephone or email. To discover the full spectrum of resources that the Society offers, call us or 1-800-344-4867 to be connected to an MS Navigator®.
MS is not a virtual disease, and the computer isn’t a substitute for personal connection, but we are working to combine the best of both worlds, looking for ways to embrace the information age and to continue to provide the healing power of human contact.
Helen Russon is a volunteer at the Oregon Chapter.