Wrapping up the year

2013 is rapidly fading, and if you are like me, then by this point you are tired of all the wrapping and the go go go “holiday mode” and may be trying to mentally prepare for next year and what it may bring with it. A lot happens in the course of a year.

As the time rushes by, try to set aside a moment and think and write about 2013 as a year. Did you have a success or accomplishment you were proud of? Was there a goal that you didn’t quite meet or something you will strive to improve on next year? Was there something that made you laugh so hard you cried?

Write your own list. You can either hang it up somewhere you see frequently to remind you of goals and moments and memories you experienced throughout 2013. Alternatively, you can write it down and seal it in an envelope, then open it when 2014 is wrapping up. This will help you reflect on what you thought of 2013 and provide a retrospective of the curveballs, challenges, victories and laughter that the year brought.

MSAA wishes you a happy New Year! Please note that our office will be closed on January 1st 2014.

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Embracing New Traditions When You Have MS

By: Matt Cavallo 

Some of my favorite childhood memories stem from the holidays. On Christmas Eve,  my Grandmother prepared a wonderful homemade Italian feast followed by a bonfire in the front yard where the whole neighborhood would gather to sing Christmas carols. Although the weather was never above freezing, we were warmed with a sense of unity in song accompanied by the melodic sound of my cousin’s saxophone.

When my wife and I decided that we were going to move away from my hometown in Massachusetts for a new life in Arizona, I knew that I was leaving behind those traditions that I cherished. I also knew that my boys wouldn’t have the same experience that I did growing up. I was worried that I would be depriving my children of those memories that I held so dear.

I had  more pertinent factors to consider in my decision, however. My MS was progressing and I no longer wanted to fight the elements that go hand in hand with living in the Northeast. I love the colors of fall, but I no longer wanted to rake the leaves. There is something so peaceful about looking out the window and seeing the first snow falling, however, the strain of shoveling the driveway and front steps after the snowfall was no longer worth the pain. Life seemed to be becoming too physically draining to really enjoy it.  I knew I was ready for a change but wasn’t sure how to start over. Would a change mean robbing my kids of childhood memories? Was I being selfish by putting my health before my family?

The first winter in Arizona was sunny, warm and free of snow.  Despite the health improvements and ease of my new lifestyle, I was still missing the Christmas ritual and traditions that I grew up with. I decided that I had two choices: revel in the sadness of what I was “missing” or create new traditions to enjoy. I chose the latter.

Maybe this isn’t the case for you. Maybe you have lived in the same place your entire life, but are experiencing limitations due to your disability. Although you didn’t move, you may no longer feel that you can participate in the holiday season the way you used to.  Don’t let these limitations take the joy out of the season you once loved. If this rings true for you, here are some steps to help you embrace new traditions:

  1. Set new expectations – If your disability is affecting your ability to participate in events, try not to relive how you used to participate.  Instead, create new expectations for how to enjoy the same events. For example, if you used to stand up and lead the band, pass the baton. You can still enjoy the music if you sit and listen.
  2. Focus on the positive – It is easy to get down on yourself during this time of year remembering days before your disability. There is an old saying that I love, “Whether you think you can or you can’t, you are right!” Be positive, believe in yourself, and you will enjoy the holidays even if it is different than it used to be.
  3. Take advantage of new technology – If you can’t be there in person, take advantage of new technology to bring you as close as possible to friends and loved ones. Skype or Google+ Hangouts are a great way to participate in an event without physically being there.
  4. Keep your memories alive but update the tradition to fit into your current life – There are certain foods that take me right back to those old days at my Grandma’s house. Learning those recipes and recreating those dinners have been a way for me to remember the past while living in the present.
  5. Tell your story – People around you view you as a fighter for battling your illness. Use this time of togetherness as a way to share your story, allowing the people you are closest to a better understanding of who you are today.

Four years later, our new family traditions are every bit as meaningful as my childhood memories. We have made great friends in Arizona, and we get together to form our own lasting memories for our children. Whether it is taking the kids up to Santa’s Village in Flagstaff or watching a parade of boats decorated in Christmas lights at the lake, these new traditions are every bit as meaningful as singing in my Grandma’s front yard, minus the frostbite.

In many ways, these new traditions make the holidays more meaningful to me. I have experienced a lot of loss with my MS. With that loss, I realize how precious each moment in life can be and have begun to live in the moment and enjoy it. Embracing these new traditions has taught me that this season is still the most wonderful time of the year despite having MS.

Happy Holidays everyone!

Please note, MSAA offices will be closed December 25th through December 30th.  We apologize for any inconvenience this may cause, and will respond to all comments and inquiries upon our return.    

*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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2013: The Year I Found My MS Voice (Thanks, Dad)

By: Jeri Burtchell 

After 15 years with multiple sclerosis (MS), I was sure I had learned all I needed to know about the disease. I’d heard every old wives’ tale, learned about every treatment, and Googled every symptom–real or imagined. Turns out I learned more in 2013 than my entire decade-and-a-half had taught me previously.

Years ago, my dad encouraged me to become a writer. Why, I had no clue. I’d never written anything he’d read except those anxiety-ridden letters from overseas as a young Army wife. Pleas for domestic advice, they had my folks in tears. Not from worry or concern, but the kind you cry when you laugh so hard you can’t catch your breath.

Dad saw a talent I never saw, but I never forgot his words. So when a friend suggested I apply for a writing job posted on Facebook, I thought why not? I believe in stepping through doors that open for you. If you don’t like what’s on the other side, you can always turn tail and run.

Imagine my surprise when I actually landed the gig. I was officially a freelance writer, covering the MS News for www.healthline.com. After my first article published, I squealed when I saw my byline. But writing a weekly article about MS would be challenging. How could there be “news” every single week? No need to worry.

I’ve stayed quite busy since I donned a reporter’s hat. There is so much going on in research now that even if I wrote a daily article I still wouldn’t cover it all.

From the exciting news that researchers in Germany have successfully rebooted the immune systems of some MS patients, to the less than great news that red wine may worsen MS, this past year has been an eye-opener.

My friends were star-struck when I interviewed Shemar Moore from Criminal Minds about his Bike MS event, but my own heart fluttered when I interviewed Dr. Steven Jacobson, Chief of the Viral Immunology Section at the National Institute of Neurological Disorders and Stroke regarding Epstein-Barr Virus and MS. I guess I’m a bit quirky when it comes to who attains “rock star” status in my world. I’m an unscientific science nerd now and MS stands for More Science, please.

It’s been a fascinating journey to live a writer’s life. Every week is a new topic, with MS the theme. Granted, some news is disappointing (the red wine, again), but there is a constant flow of MS news and that is reassuring to me. Knowing there are people out there who’ve dedicated their lives to finding the answers for us gives me hope.

So when asked what I’ve learned looking back on 2013, it would be to keep digging for the truth. To share the facts that surface each time a researcher publishes a paper on their work in the field of MS.

Having to read those papers and form intelligent-sounding questions to use in my interviews has been an ongoing lesson itself. Lucky for me, I love my job.

My most important takeaway from 2013 is that I’ve seen how valuable each of us are who live with this disease. Research would come to a screeching halt and be nothing but unproven theories if not for us. The real heroes are the volunteers who give of themselves to get us closer to a cure.

Research should be something we all consider, not just those out of options. Studies covering everything from new disease modifying therapies to fatigue, cognitive issues and more are enrolling all the time. You can browse through them using a new tool that Healthline just launched. Even if you don’t intend to join, it should give you renewed hope that a cure could be close.

But does the idea of ingesting a mystery medication in the name of science seem a little too sci-fi for you? Relax! That’s not the only way to get involved.

Sites like www.PatientsLikeMe.com give us the opportunity to engage in research by taking surveys. When you answer questions about your health, you are contributing to a gold mine of data that will help researchers in their quest for a cure.

So, while my Dad never lived to see the day I became a published author, his encouragement lives on in my heart and mind. He was right all along. I just needed to go through that door and find my reason to write. I never would have guessed, all those years ago, that my voice would come after getting MS.

So here’s to 2014! May it bring us good health and happiness, and More Science, please!

References:

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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MS & Management of Cognitive Symptoms

Have you struggled with memory loss? Is it challenging to concentrate on certain tasks? You’re certainly not alone.  It’s not unusual for individuals with multiple sclerosis to struggle with a variety of cognitive issues.  Although severe cognitive impairment only affects a small percentage of MS patients, 66% of respondents in the MS in America survey noted experiencing cognitive dysfunction.  Additionally, 49% of participants identified cognitive dysfunction as a symptom they experienced frequently (n=3,135).

frequentsymptoms

Among individuals experiencing frequent cognitive symptoms, more than 80% struggled with memory loss, concentration/attention span, information processing, and verbal fluency:

cognitive1

We recently asked our Facebook community to share their techniques for managing frustrating cognitive symptoms.   Here are some of the top tips:

    • Keep lots of lists that you can take with you, either on paper (post-its, etc) or on your phone
    • Use a calendar (paper or electronic) and update it on a regular schedule to keep track of important dates/events
    • Utilize alarms for reminders – even for simple things that you might forget
    • Avoid procrastination since you’re more likely to forget
    • Keep important things in the same place so you’ll always know where to find them
    • Label storage areas (drawers, boxes, bins, folders) so it’s easier to find things
    • Stay mentally active by learning new things, picking up hobbies, meditating, or completing crossword puzzles
    • Visualize the topic you’re talking about, it may help your mind stay focused
    • Use written communication
    • Be honest and ask for help from others, including your doctors

Don’t forget – recent research has suggested that aerobic exercise and cognitive leisure activities can also help improve memory and protect against cognitive decline.

Do you experience cognitive symptoms? How do you manage them?

The MS in America Study was conducted over the Internet from November 2012 until January 2013. The primary goal of the study was to establish an understanding of the current state and trends of patients affected by Multiple Sclerosis. The survey included over 100 questions on a broad range of topics. A total of 3,437 people started the survey while 2,562 people completed the survey resulting in a high completion rate of 74.5%. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad.

The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.

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An Early Look at the Year in Review

2013The year 2013 has been a substantial one in the world of MS. As each year passes, more and more developments and improvements are made to the ever-changing MS landscape, and it looks like we can add 2013 to that picture. The year saw the approval of a new MS treatment, the initiation of health insurance changes and availability, and increased information pertaining to upcoming trials and experimental medications for treating the disease.
2013 in review

As changes occur within the MS community, the MSAA continues to play a role in providing updated information and educational resources portraying these changes. Through educational webinars, shared-management and informational programs, the MSAA was able to provide support to those in the MS environment in learning of these developments. And as changes continue to unfold in the future, MSAA will continue to increase awareness of these developments within the MS community.

 

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Challenging Memories

Often a memory is sparked by some sort of trigger which could manifest itself as many things, a smell, a touch, or hearing a particular sound. For many, music can be a hallmarkTime For Reflection Message Means Ponder Or Reflect of specific times in their life so when listening to the radio and some random song from your past comes on you may be taken back to your living room and remember dancing and laughing with your girlfriends in the 6th grade.

Most of these memories are benign and may start you reminiscing; however, sometimes music can also evoke memories of more challenging times in your life, especially around moments of great grief or loss.

This morning, I heard one of these songs on the radio and it sparked a train of memories about a time in my life in which I experienced a significant loss. No matter how many times I hear that song it will always bring back a flood of memories.  While I can’t stop the association my response to that song is now different than it may have been 20 years ago. As people change and evolve over time so do our emotions and our personal reflections on memories even of very difficult and challenging times in our lives.

Everyone has not one song, but many; however, there may always be one that stands alone as “the song” or “the trigger” for some difficult event.  Sometimes reflection over growth and change over time can be beneficial. Over time we may find different truths in our memories, and maybe there is something positive which may be found amongst the pain. This morning when I heard “that song” I smiled instead of cried, and maybe it was a little bit of a sad smile, but that is o.k.

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

MSAA is very proud to present our 2013 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 MSAA Art Showcase submissions.

December 2013 Artist of the Month:
Teresa Grzeslo

 Rooftops by Teresa Grzeslo

“I am 60 years old and was diagnosed with MS in 1999. I have dabbled in a variety of crafts since my youth and have always appreciated fine art. As a parent, I promoted art appreciation in elementary school through an Art Mom program and fun fairs. I made posters and scenery for plays. I enjoyed these activities for 5-6 years and then enjoyed baking as my creative outlet. Over the last couple years of MSAA’s Art Contest participation, I’ve felt evolving confidence and excitement as I look forward to creative experimentation.”

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

MSAA Art Showcase 2014:
We are still accepting submissions for our 2014 Art Showcase! If you haven’t already done so, submit your best artwork by December 16th 2013 for a chance to be a part of next year’s Art Showcase.

Submit your artwork for the 2014 MSAA Art Showcase.

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MS Education – A 2014 Resolution

By Matt Cavallo

I have been living with Multiple Sclerosis for eight years now. I have not had a major relapse since 2010. Today, I am living the life that I always wanted despite having MS. I am able to work fulltime, have a loving home life with my wife and kids and participate in activities like coaching my son’s baseball team. One of the reasons that I believe I am doing well battling this disease is because I am always seeking to increase my education and understanding of the disease.

Understanding Multiple Sclerosis and all the available options for chronic illness management is paramount to being successful despite having MS. Now, more than ever, the landscape of available options is changing due to advances in medicine and tireless research. Educating yourself on the MS pipeline will make you better equipped to continue your fight.

So, where should you go for resources? Your first and best resource is your neurologist. Each MS patient is different and your neurologist knows your story better than anyone else. I see a neurologist who specializes in Multiple Sclerosis and stays up to date on all the latest MS breakthroughs and research studies.

Second, get involved in community events. Patient education events are held all over the country and have excellent information for patients. For example, the MSAA has a calendar of community events. Other organizations like the National MS Society or pharmaceutical companies also hold similar patient educational events.

Third, seek out evidence-based printed material. The Internet can be a great source of information, but how do you know that what you are reading is coming from a credible source? I frequent support groups on Facebook, Twitter and other online outlets, but how do you know that the information that you are receiving in those groups is valid? Sadly, there is a lot of misinformation on the Internet and social media sites.  Listening to advice from unreliable or irresponsible sources can actually be detrimental to your health.  My favorite online reference for MS is Healthline.com, What do you want to know about Multiple Sclerosis?This is a one stop shop to get high level information on the cause, types and treatments for MS.

Another publication that I love is The Motivator. The Motivator is published twice a year by the MSAA and covers vital issues for people living with MS. You can have the print version of The Motivator mailed to you or read it online.

Staying educated about Multiple Sclerosis will put you in a position to live well despite your condition. Taking advantage of the resources available to you will ensure that you are up-to-date with the latest, most accurate information.  Establishing an open, honest and trusting relationship with your neurologist is vital to your overall health.  They should be your go-to before making any health-related decisions. Patient events and literature can provide you with useful information as long as they are from credible sources.  If your resolution for 2014 is to take control of MS then it all starts with educating yourself on how to fight the disease.

Happy Holidays Everyone!

Resources

http://support.mymsaa.org/site/PageServer?pagename=Calendar_of_Events

http://www.healthline.com/health/multiple-sclerosis

http://mymsaa.org/publications/motivator/

*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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Join MSAA in Spreading Holiday Cheer and Awareness of Multiple Sclerosis

Choose from 18 different cards to match the personality of everyone on your list. By sending a card from MSAA, you are telling others that you take an interest in MSAA’s mission to serve as a leading resource for the entire MS community, improving lives today through vital services and support:

Send a Holiday Card

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2013-The Year of Changes

2013 has been a pretty substantial year in my life.  As I grow older, I start to reflect back each year, just to stay in tuned with myself.  I have accomplished a lot this year, in starting my career with MSAA, moving, and feeling more emotionally complete.

It is hard not to be sentimental while reflecting back; some of my favorite times are spent talking about past life events or some of the interesting people who have come into our lives.  I strongly believe that there is a lesson in every moment, but sometimes you have to take a step back to see it.

Although our physical surroundings and lives may have changed over the years, our inner souls remain the same.  We are still the same person on the inside.  For many, it can be a challenge to accept these changes; they wish to be the person they were before. However, I think we are that same person, but maybe we have become so bogged down with all of the “stuff” outside of ourselves, we have lost touch with our inner souls.

There is a quote, by Bryant H. McGill, “Change will never happen when people lack the ability and courage to see themselves for who they are”. Take some time this holiday season to find yourself again.  Maybe reach out to an old friend or family member and reminisce about the years.

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