About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Thinking About Blogging?

The MS Conversations blog has been up and running for almost four years and will celebrate its anniversary this summer. Over the last few years the blog has grown and expanded to include many new and exciting guest bloggers from the MS community.

Journaling and writing about your life and experience with MS is a personal choice and is one that is often met with a bit of hesitancy. For some, opening up in a public forum or public space runs the chance of being faced with criticism or judgement; which can be a source of stress. However, journaling or blogging can also hold positive benefits, such as; creating a bond or connection to individuals you may have never had the opportunity to meet in person.

Several options are available to those who are interested in connecting to an online community; whether it is starting your own blog or joining as a contributor to a blog that you enjoy reading, there is an option to have your voice and story heard.

blogpost

Have an interest in guest blogging with MSAA? Contact Samantha at sschech@mymsaa.org to learn more. A writing sample will be required as well as a signed consent and release form. All guest blogger opportunities are un-paid, and volunteer based.

What would you like to see from the MS Conversations blog in the next year? Are there certain topics or themes that would be helpful? Please comment below or reach out to us with any suggestions.

Share

New Year Goals and Designing My Life

By: Stacie Prada

My approach toward New Year resolutions is to just pause, think about things I want to accomplish or do in my life, or stop doing for that matter, and make a plan. It’s less about making resolutions than focusing my energy toward goals I’d like to achieve and living a life I’ll love. I think of it as designing my life and using a new year to motivate me to consider and organize my priorities.

Articles online say people fail their New Year’s resolutions within a very short time into the New Year. I’d rather commit to change and effort than to a specific task-based resolution that isn’t always achievable when health issues or life obligations interfere. It’s also easy to get sidetracked. If I have a plan and a mechanism for remembering what I’d like to accomplish, I’m more likely to succeed.

This approach was very successful for me last year when I signed up for a marathon. I stretched a 20 week training plan to 36 weeks. It allowed for plenty of setbacks without the pressure of failing. It also helped keep it fun. See my post, “Adapting to My Limitations and Doing a Marathon Anyway.”

Considering my MS disease progression will likely include mobility issues in the future, I prioritize being active. I think about things I want to do in my lifetime that I will enjoy and that I may not be able to do if I lose my mobility. My goal is to try to do them sooner than later. If I don’t do some of these things, it won’t ruin me. But I want to be conscious of them and incorporate them into my life now if possible. I enjoy planning and doing them now, and I will enjoy them in the future while reminiscing about them.

None of the changes I want to make are done in the first month of a new year. Instead, my intention is to prepare. I’m not setting up resolutions to do things perfectly all year long. I’m creating a plan with routines to make progress toward living a life I love while enjoying my life as it is today.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Share

A Message from Our New President & CEO – Gina Ross Murdoch

Welcome to 2016! As we begin a new year, I am thrilled and honored to be assuming the role of President and Chief Executive Officer of our Multiple Sclerosis Association of America. My fourteen years with the National MS Society galvanized my dedication to all affected by MS. I join our organization building on the great foundation established by Doug Franklin, Bob Rapp, the Board of Directors, volunteers, and the entire staff. These visionary leaders have made a significant impact on the lives of those affected by multiple sclerosis. Through their dedication to improving lives, so many of our members have received much-needed equipment, critical MRIs, cutting-edge technology via our My MS Manager mobile app, and invaluable information through our programs. I would be remiss if I didn’t start off my first post with a heartfelt thank you for all that they have done.

Going into this new year, we face challenges and new opportunities. The worlds of healthcare, insurance and research are constantly changing. Despite this varied landscape, we at YOUR MSAA remain singular in our focus to improve lives. Although this is our singular focus, it is not our singular responsibility. I encourage each and every one of you to get involved in MSAA activities and help us expand the word about how we are here to help. Multiple sclerosis is unpredictable. I have seen that all too well in my many years engaged with our community. I have seen some do well on our ever growing list of disease-modifying treatments. I have also seen those who have lost so much to MS and the overwhelming effects of that diagnosis on their families.

Now as we face the challenges and opportunities of a new year, I invite you to be an advocate for MSAA, for yourself and for those still to be diagnosed. We have made an impact but every week 200 more people need our help, need our information, need our support. Collectively, our MSAA members are in the hundreds of thousands – a very powerful agent for improving lives. My goal is to work collectively with staff, board members, volunteers, and our partners to continue our key programs while also investigating what new services our members need tomorrow. Together, we can take the good work of MSAA to so many more. Together, we can touch more lives and IMPROVE more lives. You will hear me a lot during this year – where we are, what we are doing and how YOU can be a part of our next chapter. I encourage you to reach out to me and let us know about opportunities in your town, your state and your region. A constant flow of information leads to quicker and better ideas.

I thank you in advance for your involvement, your passion, your feedback, and your dedication to Improving Lives and Planning for Tomorrow.

Happy New Year,

Gina Ross Murdoch
MSAA President & CEO

Share

2016 – A Work-in-Progress

By: Matt Cavallo

Last year at this time I wrote about how small changes can make a big difference in the New Year. Some of the advice from that post included: developing a financial plan, changing eating habits, exercising, getting back on your schedule and setting attainable goals. I used this advice to make major changes in my life which led to a year of self-renewal. This doesn’t mean that I achieved all of my goals. Rather, I found that at the start of 2016, I am still a work in progress. Let me explain.

Exercising was one small change in 2015 that led to a big difference in how I felt. Let me first state that I am no workout warrior and have spent a lifetime of avoiding working out, but I knew that it would make me feel better so I took the leap. I started going to the gym three days a week. Not only that, but I was riding my bike back in forth to the gym to get in 10 miles of cardio each day. I started to see real results in about three months. Then, during a routine work out I felt that I tweaked my neck a little bit. Because of my past multiple sclerosis episodes and ensuing cervical fusion, I wasn’t about to risk further injury. So, I called my neurologist who scheduled an MRI and referred me to physical therapy. My goal for 2016 now include starting physical therapy to strengthen my neck so I can return to the gym and resume my previous work out plan.

Developing a financial plan, setting attainable goals and sticking to a schedule were also critical to my 2015 success. My wife and I set a goal of being able to quit my day job and pursue my writing, speaking and clinical education full time by 2016. In order to do this we needed to get our finances in order and create a schedule that allowed me to build my business while still completing my full-time commitments. This required a lot of work and sacrifices. However, careful planning allowed me to make sure that I fulfilled all my commitments while remaining balanced with family life. In December of 2015, I was able to leave my full-time job and pursue to my business full time. We knew that starting a business while having multiple sclerosis and a family is a big risk but now I am living the life that I always wanted to and my multiple sclerosis is not getting in my way.

The one resolution for 2015 that I failed was controlling my eating habits. It is hard to eat right, especially with traveling for work and raising young boys. As I celebrated my last birthday this past summer, I realized that the pounds were not melting off the way that they had in the past. The holidays added some extra weight and as I am writing this I am ten pounds heavier than I was last year. Those extra ten pounds create fatigue and numbness for me and my multiple sclerosis. Now in the New Year, I have started eating salads for lunch each day and cutting back on refined carbohydrates. I am also riding my bike again. I realize now that the metabolism of my youth is not coming back and that my eating decision can affect my MS symptoms. In 2016, I am making a commitment to make change in my diet for my health and well being.

The thing about it is I have realized that I am in charge of all decisions I make in life. Some of the risks I have taken or the changes that I have made have been tough. The easy thing would have been to do nothing. With hard work and determination I took control of my life and you can do the same with yours. If you are reading this post maybe you want to make changes but don’t know how. The MSAA has great resources in all of these areas from financial planning and fitness to goal-setting and diet.

To start 2016, I am still a work in progress and that is OK. The first step in change is making the decision to do so. Once you have, you’ll be glad you did. From my family to yours, Happy New Year’s. Believe that you can be the change you want in 2016!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

Share

The Art of Reflection

By: Meagan Freeman

The start of a new year brings with it the opportunity for each of us to do an internal review, analyzing the things we experienced during the past 12 months. With an illness like MS, we are constantly challenged to evaluate our treatment choices and lifestyle decisions, and this time of year is a wonderful time to do some reflection. How did we feel during the past year? How many relapses occurred? How are we feeling now compared to the previous year? Are there things we would like to change, or are we content with our current state of health?

Life with MS brings constant, daily “fluctuations,” with some symptoms appearing and quickly disappearing, and others seeming to accumulate and resolve very slowly or not at all. I find that looking back over an entire year, comparing full years rather than days, is more helpful in determining whether my treatments are successful. It is important to keep an optimistic attitude despite our condition, and try to see the coming year as a time of opportunity and renewal.

I always like to spend time around January 1st reflecting on the past year; doing a sort of “life review,” and analyzing the success, failures, and learning opportunities. I am always amazed at how many things have changed during the year, and it takes the perspective of time to realize that. Sometimes, we feel that everything is “stuck,” standing still, and no progress is being made. However, if we simply turn back and look at how far we have come, we can see that everything changes.

Often, I hear other MS patients asking why a cure hasn’t been found yet, why it seems that no progress has been made. I would argue, quite the contrary. From a historical perspective, we can see incredible progress. We have come such a long way in our fight against this disease, even though we haven’t quite reached the end of the battle. We have 13 disease modifying drugs in 2016, and in 1992 there were none. Isn’t that a striking statistic? In just over 30 years, MS has gone from being untreatable, to having 13 possible treatment options. Much progress has been made, and we need to try to keep our collective eyes on the finish line, toward the inevitable day that will bring an ultimate cure for this disease. There is much to be hopeful for, and much to be grateful about. Never lose hope, and stay strong knowing that you are never alone. Happy New Year to all!

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

Share

Have a Safe and Happy New Year

Happy New Year 2016 (2)

From everyone here at MSAA Headquarters, we wish you a safe and Happy New Year. While we reflect back on 2015 a quote comes to mind:

“Year’s end is neither an end nor a beginning but a going on, with all the wisdom that experience can instill in us.”

-Hal Borland

As we move into the new year, use the challenges of the past as propellers for wisdom and guidance in 2016; with every challenge a new opportunity is born.

PLEASE NOTE:  MSAA’s offices will be closed Thursday, December 31st, through Sunday, January 3rd. 

Share

Making and Preserving Memories

By: Stacie Prada

As we embark on a new year, I think about the highlights of the past year. What makes me grin, what am I proud of accomplishing, and what was meaningful to me? How can I memorialize these things so that I can enjoy them in the future? I think it’s important to mark the passage of time, celebrate our successes, and keep our years from merging into each other without distinction.

When asked what one thing people would save in case of fire, they often say their photographs. I think this is telling for how important memories are to us, and I think this is helpful information for us to proactively add joy and meaning to our lives.

If we lose our photos, we will hopefully still have our memories. But what if we lose them with MS disease progression or aging? I may never reach a point in my life where I experience the extent of memory loss that people with Alzheimer’s and dementia experience. Still I think it’s helpful to look at the extreme cases and learn from them. People with dementia are sometimes able to recoup some memories through music, stories, and photographs, and this can improve their quality of life.

Creating Memory Triggers: We can work to improve our memory, but I also think it serves us well to create memory triggers that help us retrieve memories. I like to preserve memories physically through photographs and mentally through tying them to other things like music, people, food, and aromas. I try to enjoy the moment, feel it, and store it away in the subconscious. These are some ways I enhance my experiences and create memory cues:

• Take photographs. I love my camera and tripod attachment that will allow me to take a time delay photograph of everyone in the room – no need to have one person take the photograph and be left out of the photo. Have someone take action shots of you doing things you love. These will help you remember how you felt while doing them.

• Put photos in an album either in hard copy or digital format. Just make sure they’re accessible to look at. If you can add notes about the photo, all the better.

blog_memories_IMG_4455 (2) (2)
• Pay attention to music. Buy the soundtrack to a movie you enjoyed. Make a playlist of the songs you heard for the first time this year or are meaningful to you at this time in your life.

• Journal about things you care about. This is a terrific way to remember your thoughts and how you felt at a specific time in your life.

• Relish the taste of foods you love. Tell people in your life your favorite foods. It’s pretty incredible how people tend to remember other people’s favorite foods.

• Take time to smell things and register them. Think about how a baby smells fresh from a bath, how a forest smells after a rain, or how baked goods smell fresh from the oven. Take a big whiff if you like something, and pause to appreciate it.

Preserving my memories is not a solely selfish endeavor. My memories involve my friends and family, and compiling them is a gift for them to share with or without me. My mother kept a scrapbook for our family when I was young, and the stories she wrote to accompany photographs truly tell a lot more beyond the photographs. She’s been gone many years now, but seeing her thoughts preserved in her handwriting brings her back to us in a special way. My sisters and I treasure them, and things we may have known at one time but hadn’t remembered are available to us now.

With MS, other neurological diseases, and just aging in general, cognition and memory can be something that declines. The idea of losing my memory is scary, but it’s less so when I can actively do things that may improve my life now and for years to come.

Resources:
• Music & memory is an organization that provides iPods with personalized playlists to people with Alzheimer’s and dementia that improves those people’s quality of life. https://musicandmemory.org

StoryCorps’ mission is to provide people of all backgrounds and beliefs with the opportunity to record, share and preserve the stories of our lives. They have an app that allows anyone to record their stories. https://storycorps.org/

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Share

Wishing You a Safe and Joyous Holiday Season

Happy Holidays 2015

There is still time to share holiday greetings and raise awareness about MSAA! This season, our festive cards include artwork by artists living with multiple sclerosis. Please visit support.mymsaa.org/holidaycards to send a holiday eCard to everyone on your list!

PLEASE NOTE:  MSAA’s offices will be closed Thursday, December 24th, through Sunday, December 27th. 

Share

At This Time of Year

By: Bob Rapp

I am a partner to a person living with MS. My wife has been living with the disease for over 20 years and has done remarkably well. She has always been meticulous about her health. She eats well (except for the candy), exercises almost daily and is adherent to her medications. Things are not perfect but she has, and continues, to lead her life. She’s pretty tough and resilient.

A few months ago as some of her symptoms seemingly began to worsen, she had an MRI and the scan showed some new lesions. In consultation with her neurologist they decided it was time to change her DMT from the one that has been so effective for all of those years to a new medication that would hopefully better manage her disease. As people who have gone through this transition know, that is not as simple as it sounds. In some ways it is like losing a trusted friend, one that has been by your side for decades. You worry about the new medications effectiveness, you may experience side effects that you thought you left behind so many years ago and you worry about the future.

It is another of those unpredictable consequences of having MS. Another aspect that has to be managed. Another hurdle to be overcome. Another issue where the support of others is so important.

So what is my purpose in sharing this personal story during this holiday season? It is a simple one. To encourage everyone to enjoy these special days, celebrate what we have and the goodness in life. Laugh a lot and keep your friends, family and loved ones close. MS and the challenges it brings will be around but it need not consume our lives. Keep on living. Happy holidays!

*Bob Rapp is the Chief Operating Officer of MSAA. He has been a care partner to a person living with MS for more than a decade.

Share

Finding the Strength to Fight MS for the Holidays

By: Matt Cavallo

In September of 2010, I was faced with a devastating decision. I was experiencing severe spinal stenosis and a fractured C6 vertebra, which my doctors believed was a result of complications due to my initial onset of transverse myelitis five years earlier. My decision was to have an emergency cervical fusion to address the problem before it became more complicated. At the time, my kids were only three and one years old and I was worried that if I didn’t have the surgery I wouldn’t be able to participate in their lives the way that I wanted too.

Fast forward to December of 2010, I was out of the neck brace and going through physical therapy. I was weak, tired and had lost a lot of weight. The surgery was another in a long string of MS events that rendered me in a depressed state. I didn’t want to see friends or family and had become a shell of my former self at the house. The blinking of Christmas lights and singing of carolers was not enough to get me in the Christmas spirit.

I was working at the hospital at the time and my practice manager was throwing a holiday party. She insisted that I be there. I was feeling like Ebenezer Scrooge and issued a, “Bah Humbug” at the thought of kibitzing with my coworkers (even though they were doctors, nurses and therapists). My wife convinced me to go to the holiday party and I parked myself in a chair by the fire pit in the back yard for a couple of hours. My coworkers brought me food, drink and merriment, but I still could not find the spirit.

Was this going to be the year I gave up on Christmas? Was this the year that MS had finally won the battle?

My parents flew into town just before Christmas. My dad is a great Italian chef and the familiar aromas of my grandmother’s recipes were not enough to snap me out of my funk. His food smelled and tasted like memories of Christmas past. Now, here I am, Tiny Tim wondering how long I could feign a smile despite the depression and ill feelings MS had saddled me with this holiday season. I went to bed believing that maybe I did deserve a lump of coal in my stocking.

Then it happened.

Christmas morning 2010, two wild-eyed and blonde-haired boys rounded the steps to see the gifts that Santa had left for them. Their spirit and enthusiasm sparked a flame inside me. I knew that no matter how bad I was feeling or wanting to give up that these two boys needed me to be there in the moment with them. So I donned my Santa hat and let them sit on my lap on the floor as they ripped open the wrapped Christmas presents with delight. It was then that I realized the true meaning of Christmas was to find joy and be thankful for my many blessings despite difficult times. Regardless of what holiday you celebrate, I hope your season is filled with hope, joy and love.

Happy holidays everyone and a happy New Year, from my family to yours!
matt

Figure 1: Matt and Colby putting together a Christmas toy 2010

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

Share