A Day On, Not a Day Off.

Is not this, then, a century worth living in – a day worth serving? And though toil, hard, heavy toil, be the price of life, shall we not, young men and women, gladly work and sacrifice and serve…?” – W.E.B. Dubois, 1898

On Monday, January 18th our nation will once again pause to remember the great Dr. Martin Luther King, a leader and activist most noted for his role in advancing the civil rights movement. This day gives us the opportunity to reflect on his legacy of service and explore what service means to us in this current age.

MLK Day 2016MLK Day is the only federal holiday observed as a national day of service, and celebrated as “a day on, not a day off.” Each year, citizens all across the country honor Dr. King’s memory by participating in acts of service that benefit their community. This Monday, January 18th, we encourage you to help improve lives today for the multiple sclerosis community as your act of service.

We would love to hear how you are spending your Monday. Let us know what fun activities you’ll be doing either here or on our Facebook page.

Need some ideas of how you can be of service to the MS community?

1. Donate your time by creating a fundraising event to benefit MSAA.
2. Participate in Swim for MS.
3. Make a purchase from a company that supports charitable causes.
4. Make a monetary contribution.
5. Sign up for our Street Squad program and begin spreading the word about MSAA.
6. Perform random acts of kindness for someone in your community.

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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

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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/

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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.

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January 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

January Artist of the Month:
Janet Laycox – Winter

 Janet Laycox - Winter

About the Artist:
“My name is Janet Laycox. I was diagnosed with MS in 1994. I have Secondary Progressive MS and use a walker to get around.

I always feel so good when people tell me that they are amazed at how much I do. Yes, as most of us MS’ers know, we can do what anyone else does but in our own way. I have been volunteering at the West Milford Animal Shelter for 12 years. I am also a volunteer at our support group for MS, the ADA committee for my township and the Passaic County Council on Disability. A few of us from the Squeaky Wheels MS support group thought it would be fun to join in a community center oil painting class.

Well here is one of the first oil paintings I ever did. I must say I really enjoyed it, will continue and hope to improve.”
Read more

Be inspired – please send an online card featuring artwork by MS artist Janet Laycox and spread awareness of MS and MSAA.

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Here’s To a New Year!

When the clock struck midnight on December 31st, it symbolized the beginning of a brand new year for us to embark on! 2016 is here and it brings with it hope and light and aspirations that will optimistically fill the year ahead. The year of 2015 brought many different types of happenings; some dark, others bright, but also the chance to look ahead to a new time with different opportunities to seize and novel goals to set.

The new year represents new beginnings and a fresh start, a time to look ahead and think about what it is you’d like to do with your time in the coming year. This new time can mean different things to everyone—we are all unique so the things we set out to consider and do in the year ahead will be diverse. There’s no wrong resolution to set or incorrect goal to carry out; what you plan for yourself in the days ahead is up to you.

So what are some the things you’d like to do in the new year? I’ll get this discussion going: I’d like to take a class of some kind, maybe a cooking course (those skills would be welcome in my kitchen, haha).

How about you?

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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. 

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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.

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• 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/

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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. 

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What Webster Doesn’t Tell You About MS

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Webster’s Dictionary defines MS as: a disease of the nervous system that causes the gradual loss of muscle control. But for anyone experiencing multiple sclerosis on a daily basis, you know that’s only half the story. Our fantastic contributor, Stephanie, wrote an article about the “Lesser Known MS Evils” and the community loved it.

Here are some of the odd, unexpected symptoms our MS community experiences:

“It itches, it burns, it’s even numb!”

  • Itching
    • The itching has been the most annoying for me. It always happens in one part of my back, and doesn’t stop with scratching
    • My hands itch all the time. I always thought I just had dry skin!
    • I get itchy skin all over my face and even my eye lids!
  • Burning
    • My tongue has felt burnt since I was diagnosed a little over 2 years ago. 
    • The burning has been so bad
    • It literally feels like I’m burning. I get so hot and sweat just pours off me!
  • Numbness
    • I can never tell if I’m cold or hot!
    • Sometimes the left side of my face just decides to go numb.
    • I get so much numbness. You would think if it’s numb, it wouldn’t be able to hurt. But nope. I get both 

“It’s like my body forgets how to…”

  • Swallow…
    • Nothing like having to explain that my body “forgot” how to swallow
    • I had trouble swallowing when I first was diagnosed. Took me hours to finish dinner!
    • I regularly choke on my own spit.
    • Mine mainly happens with drinks, especially warm ones, and every so often I “choke” for no reason. It can be especially embarrassing at work
  • Talk…
    • Finally some validation for being a “Low Talker!” Now, when my husband says, “Why are you screaming at me?” I can justify it!
    • The cadence of my speech has definitely altered over the last 2 years.
    • My voice has been shot for years and I can’t seem to pronounce basic words anymore
  • Breathe…
    • Sometimes my body forgets if it was breathing in or out…not a good feeling, especially when I’m alone.
    • I definitely experience the breathing and swallowing issue, that is so painful and scary
  • Write…
    • Itching is one of my worst also my handwriting has gotten so bad.
    • Oh the handwriting. On bad days, my penmanship looks like a 5 year old attempting to write with their non-dominant hand.
  • Think…
  • The only way I can describe it is like a short-circuit feeling in your head.
  • My family has been the saying that I’m losing it. YES! That’s exactly how I feel!
  • It’s like pregnancy brain…but ALL THE TIME

How about you? Any strange symptoms you’ve experienced from your MS? Maybe ones you didn’t even know could be due to your MS? Share with us in the comments!

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