Wrapping up the year

Posted on December 30, 2013 by MSAA

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 1^st 2014.

Embracing New Traditions When You Have MS

Posted on December 23, 2013 by MSAA

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:

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.
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.
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.
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.
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/

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

Posted on December 20, 2013 by Samantha Schech

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.

Challenging Memories

Posted on December 13, 2013 by MSAA

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 hallmark 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 6^th 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.

MS Education – A 2014 Resolution

Posted on December 9, 2013 by MSAA

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

https://mymsaa.org/publications/motivator/

2013-The Year of Changes

Posted on December 4, 2013 by Samantha Schech

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.

Creating a Different Kind of Holiday Season When You Have MS:

Posted on December 2, 2013 by MSAA

Now that Thanksgiving has come and gone, it is easy to get wrapped up in the holiday bustle. Many people get so focused on decorating and shopping that holiday thoughts change from decorating enough to feel festive and finding gifts that spread cheer, to the bigger and fancier (and more expensive) the gifts and decorations, the better the holiday.

So, before we all get wrapped up in consumerism, I would ask you to think about creating a different kind of Holiday Season this year. Instead of having said your yearly, “Thanks” on Thanksgiving, carry that idea over into the rest of your holidays by creating a Gratitude Journal.

You might be asking, “What is a Gratitude Journal?”

Several studies have shown that individuals who participate in gratitude-based activities may have an improved sense of well-being. So, I would challenge you to get either a specific journal or notebook (or smartphone app) and assign that as a specific place to write each day one thing for which you are grateful. Try to spend at least 10-15 minutes thinking about what you are grateful for, why you are grateful for it, and how it impacts your life before you write it down. At the end of each week, spend a little time to read over all the things you have written down over the last week.

At the end of the month, reflect back. Has this activity helped to keep you centered and focused during the Holiday Season? If so, this may be an activity to keep up throughout the year, reminding us that Holiday Season or not, upon reflection there are things large and small for which we are grateful.

Having MS: Alone For the Holidays

Posted on November 25, 2013 by MSAA

By Gayle Lewis, Ph.D.

It seems inevitable that, come the holiday season, which for some starts not just with an actual acknowledged date of “celebration,” but with the first signs of winter’s cold, it’s not the feelings of cheer and joy and brotherly love that abound, but rather feelings of sadness, loneliness and feeling very much alone and isolated. Why? After all, Thanksgiving, Christmas, Hanukah, New Year’s are times of social gatherings, shared rituals and reminiscences. How come we all can’t just hop on board and feel festive and full of holiday spirit? And how come someone who has MS might just be feeling those aforementioned lows more deeply and profoundly than someone who is not struggling with MS’s chronicity?

Multiple sclerosis, whether it’s the more invisible kind or the more obvious symptomatic, renders the sufferer to feel “different” ALL THE TIME. And not necessarily different in the “I am special” way. “Different” in this case often means, “I don’t belong,” “I don’t fit,” “No one gets me or understands me.” And holidays, being a time for gatherings, friends and family, when you already feel like you don’t belong, it can feel more intensely uncomfortable being a joiner because it’s what is expected during holiday season. In addition, the common Norman Rockwell–like characterization of the holidays can seem unreal to people whose families don’t fit the traditional-nuclear-family mold due to circumstances beyond their control, and having MS can exacerbate some of the complications there already in trying to fit into the mold.

It’s been my experience that many family members of people diagnosed with MS have not made an effort to understand their family member’s disease due to fear, disinterest, or distance that existed even prior to the time of diagnosis, and/or the patient actively deciding NOT to tell that he/she has MS. In the latter situation (which happens quite often), whatever holiday loneliness or feeling as if they do not fit, it is due to active participation of the patient with MS. To be sure, I am not blaming the patient for not sharing about their disease. There are often family histories and dynamics that inform that decision…and inform ANYONE’s feelings about the holidays, whether joyful or lonely. But MS IS a lonely disease, even if you tell someone about it, because most patients, at least the ones with whom I work, feel like no one gets it. And how could someone with MS not feel especially alone during the holidays at a time when you already feel like you don’t belong, as per usual anyway?

*Gayle Lewis, Ph.D. is a psychologist and psychoanalyst in private practice in New York City, Associate Clinical Professor, Department of Neurology, at NYU’s Langone Medical Center, and Staff Psychologist at Juilliard’s Counseling Center. Additionally she is a graduate of both the American Institute for Psychoanalysis and the EDCAS program at the William Alanson White Institute. She specializes in the treatment of trauma, eating disorders and individuals with Multiple Sclerosis. See www.drgaylelewis.com

Why I No Longer Fear the Holidays and Why You Don’t Have to Either (Even When You Have MS)

Posted on November 22, 2013 by MSAA

By Jerri Burtchell

When I was a kid I loved this time of year. Snow on the ground, great food (except for that weird Jell-O salad Aunt Mary always made), and presents at Christmas. Things have changed since I was diagnosed with multiple sclerosis (MS) in 1999. Now a sense of foreboding overcomes me each year, right after Halloween.

I’m not the “bah-humbug!” type, but I do hail from a long line of worriers. Maybe we were meant to be “warriors”, but some genetic mutation caused a typo. Now we fear things our imaginations dream up. The “what if” syndrome. My MS diagnosis has elevated my worrying to a whole new level.

Holiday time is prime “what if?” time for me. What if I can’t navigate the busy malls and grocery stores? What if the handicapped parking is all taken up? What if I don’t have enough money to give everyone gifts? What if this fatigue keeps me from enjoying the family I rarely get to see? And the biggest one: What if all this worrying stresses me out and I end up relapsing?

One Christmas, that changed when our family shared what other families keep secret. We all admitted that gift buying was stressing us out. Not only the act of shopping, but the dent it was putting in our pocketbooks. Our name isn’t Trump or even Kardashian. We don’t have money or personal shoppers. What a relief to know we all felt the same way!

So we started something new. When we gather at Thanksgiving now, part of our tradition is drawing names for Christmas gift exchange. We’ve instantly gone from buying gifts for ten to buying for one. Stress diminished. To take it a step further, we can only spend $20. Now the stress was melting like snow in the spring.

Christmas morning is no longer spent in a flurry of mindless paper shredding as we tear through one present after another. But the only ones disappointed are the cats with less cardboard boxes to explore. We still have the experience of gifts under the tree, but now it’s a single, more thoughtful, often handmade gift.

And we quit competing with Martha Stewart for the most elaborate side dishes and desserts. Not everything has to be perfect. We’re enjoying things on our terms, not those set forth in Better Homes and Gardens.

One Christmas I got a late start putting up the decorations. It seems MS fatigue brings out the natural procrastinator in me. So imagine my panic when I went to get the fake tree from the garage only to find it was now home to a family of mice.

I took a few deep breaths and channeled MacGyver. Before you know it, a big vase was the base for my silver, spray-painted Christmas “stick” – a dead branch I’d dragged in from the yard. With a string of lights and a few baubles here and there, the problem was solved. The best part is, it was cheap, handy, and I finally made use of an idea I’d pinned on Pinterest.com.

So in freeing myself from the stress that comes with striving for perfection, the reward I got was more quality time to spend with those I love–the only gift that counts.

Life passes too quickly and before you can say, “Black Friday,” it’s all over. I can safely say I won’t be lying on my deathbed lamenting over all the bargain basement prices I missed out on. It’s the people in my life and the connections we made that will be my fondest memories.

I won’t be stressing over the perfect gift for someone this Christmas, or if I forgot to put the marshmallows on top of the sweet potato casserole…again. I’m going to be counting my blessings in each smiling face that comes through the door.

So forget what the commercials all tell you to do. When you give yourself permission to lower your expectations of perfection, miracles happen. You have lots of laughs, give lots of hugs, and take lots of pictures. Aren’t those the memories you’ll treasure most in the end?

And that gem of wisdom is my holiday gift to you. (It was handmade and cost me less than twenty bucks – Enjoy!)

References: http://www.healthline.com/health-slideshow/pictures-multiple-sclerosis-psychological-changes

Angel’s Tips for the MS Community on Getting Prepared for Winter

Posted on November 20, 2013 by Angel Blair

Brrrrrr…..Is that winter right around the corner? It sure feels like it! In some parts of the country, people don’t have to wonder what day winter will show up, as some states have already had their first bout of snowfall this season. Because winter is highlighted as the cold and flu season, it’s important to take precautions when you can so you can stay feeling well; after all, it can be a very busy time of year!

Flu Shot: Yay or Nay?

The flu vaccine is one precaution individuals take in preventing the spread of the flu virus. It’s important to consult with your doctor to determine if getting a flu shot is appropriate for you. For more information regarding the flu vaccine, see the MSAA article Vaccine Safety and MS at https://mymsaa.org/news-msaa/924-vaccine-safety-ms

Germ Prevention

Cold and flu season is an important time to be cautious in preventing the spread of bacteria. It’s helpful to keep things sanitary. Use disinfectant wipes to clean surfaces in your home and car. Wash your hands regularly to avoid the spread of germs to your mouth/face, and avoid putting your hands to your face in public spaces, especially in doctors’ offices or health facilities.

Close for Comfort

With winter bringing holiday celebrations and gatherings in its midst, it can be tricky to stay in a germ-free zone. Be aware of those loved ones who may be sniffling and sneezing, because as much as it’s nice to receive their embrace, it’s not as lovely to receive the germs. Stay alert in public spaces like stores during the holiday rush, as bacteria likes to travel in crowds. Disinfect with antibacterial soaps and sanitizers and leave those germs out in the cold!

What’s your plan in getting prepared for winter?

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