I’ll Meet You on the Internet: Social Media is the New Support Group

Posted on January 29, 2014 by MSAA

By: Jeri Burtchell

When I was young, I would roll my eyes whenever Dad began a sentence with “back in my day.” Whatever he was about to reveal was sure to be irrelevant now. Times change and one generation’s “cutting edge” becomes passé to the next. And now, when I reflect on my early life with MS, I find myself sounding just like my dad.

Back in my day, when I was diagnosed in 1999, I didn’t have a computer, let alone internet. If I wanted to find out about my condition, I had to go to see my neurologist. Who else had the answers? There was no Google to ask, no “Web MD” to consult about symptoms.

Back in my day, if you wanted to connect, you went to a real support group and talked to one another face to face. We weren’t sitting in front of glowing screens connected to typewriters, pouring our souls out to faceless strangers. I would have laughed at such a prediction much the same way my grandparents would have reacted to the concept of television.

With every new iPhone release or tablet launch, technology is evolving, redefining our relationships and how we interact. In a way, I am melancholy for a time when “social” meant playing board games or telling stories round the campfire. Not to worry, though, no doubt there’s an app for that.

But then I consider how the internet has empowered the chronically ill, and technology is easily forgiven for its domineering takeover of everyday life. Housebound no longer means isolated. Loneliness is banished by the wi-fi connection.

From blog posts like this, to message boards, to Twitter and Facebook, we are all interwoven now, able to instantly respond to what we read or see. We exchange ideas, comfort each other, help each other find answers, soothed by the reminder that we don’t battle this disease alone.

From the time I blogged my clinical trial back in 2007, I saw firsthand how my words, launched into cyberspace, connected me to others: a pure and unbridled connection of thoughts. They weren’t clouded by self-conscious worries of how others might perceive me. And let’s face it, who doesn’t love going out of the house “virtually,” not having to worry if your clothes match or hair is brushed?

In fact, I’m sitting here in my bathrobe at 4 a.m. writing this blog post, connecting with you on my terms, at my time. It works both ways since you are reading this at your convenience, on your terms — and maybe in your jammies, too. The freedom and control is undeniable.

No matter if you are a ballerina who can stand en pointe or your soul does a dance from a chair … we can all fly free here, expressing ourselves online.

For a time, I thought my internet MS social circle was all I needed for support. Then I had an opportunity to be a patient speaker for Novartis, sharing my Gilenya experience with others. Interacting with group after group of MSers around the country, I was honored to meet new people, all so different from me, yet we all have MS as a common denominator.

That face-to-face connection allowed me to hear the inflection in their voices, read the emotion in their eyes–something the internet has yet to replace.

I am no longer a speaker for the drug, but I was so moved by that experience that I started a support group in my county. I was hoping to bring that personal connection to those in my community who are living with MS. So, I have come full circle and realize interacting in person is still an important piece of the social puzzle. Nothing can take the place of a real hug from someone else who “gets it”. No amount of emoticons can compare.

But when you live in the sticks, or your condition makes it hard to get out, the MSers of today have something we didn’t have–back in my day–people who know exactly what you’re going through and they’re only a keyboard away. The internet is full of support.

Sometimes I wonder what Dad would think of us connecting on the internet. I’m fairly certain that if he began his reply with “Back in my day” it would probably end with “I couldn’t have imagined anything as empowering as this.”

References:

http://www.gilenyaandme.com/

http://www.healthline.com/health-slideshow/multiple-sclerosis-support-groups#1

*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.

How do you treat your MS?

Posted on January 24, 2014 by MultipleSclerosis.net

Multiple sclerosis symptoms can vary greatly between different individuals, as can the progression of the disease. Therefore it’s no surprise that treatment strategies also vary from person to person. Since there is no known cure or “easy fix” for MS, the primary goal of treatment is to manage the disease while maintaining quality of life. There are currently a number of treatment strategies to help alter the disease course, manage symptoms, manage relapses, and support your overall physical and mental health.

In the MS in America study, 95.5% of respondents indicated that they had tried prescription medications while 85.3% were currently using prescription treatments. Although prescription and over-the-counter medications were the most frequently used treatments, a variety of Complementary and Alternative therapies were also utilized.

Nearly 80% of survey participants had tried Vitamin D and 62% tried exercise. Almost half of respondents tried changes in diet to help manage their MS and just over 10% of survey participants indicated that they were currently using rehabilitation therapies including physical therapy, occupational therapy, speech/swallowing therapy, cognitive rehabilitation, and vocational therapy.

Of these respondents, 57% were satisfied with their current treatment plan and 12.8% were dissatisfied with their current regimen (30% were neutral; n=2,854).

What treatment and management strategies have you tried for your MS? What’s worked and what hasn’t?

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.

Tips for Avoiding a Post-Holiday Multiple Sclerosis Flare

Posted on January 15, 2014 by MSAA

By: Matt Cavallo

The holiday season is behind us. Packed away in the garage are all the ornamental memories of the season. Driving around the neighborhood at night no longer is decorated by blinking bright lights. And while the majority of people are resuming their day-to-day routine, those of us living with Multiple Sclerosis are unknowingly entering the danger zone.

While the holidays are a magical time of year, they also impose emotional and financial stresses upon us. Many of us are looking at our December statements wondering how we spent so much or how we are going to pay off the bills. We are probably also feeling the after effects of all those great holiday dinners and desserts.

As the stress of paying the bills or trying to lose weight begins to build, we are at a greater risk for triggering a Multiple Sclerosis Exacerbation. According to the National MS Society, “an exacerbation of MS (also known as a relapse, attack, or flare-up) causes new symptoms or the worsening of old symptoms.” A 2003 research study concluded that, “stressful events were associated with increased exacerbations in relapsing-remitting multiple sclerosis.” Furthermore, according to Healthline.com, “researchers considered the four weeks following a stressful event to be a high-risk time for exacerbations.”

Considering that the holidays are a stressful event, for those of us living with MS, this stress can lead to an exacerbation. Here are some tips to help minimize the stress from the holidays:

Tips for Minimizing Post-Holiday Stress

Develop a financial plan – as the bills mount from the holidays, create a financial plan to help successfully budget your expenses. You may not be able to pay off the bills right away, but having a plan to pay off debt can help reduce stress associated with financial obligations.
Change eating habits – the holidays include a lot of emotional eating. Not only do we eat larger portion sizes during the holiday, but we also eat more desserts. Use the time after the holiday to get back on track in terms of eating healthy.
Exercise – the stress of holidays and the shorter days of winter make it easy to skip exercising. Exercising reduces stress and can help with symptom management.
Get back on schedule – the holidays force you out of your routine. The stress of getting to these holiday events or finding the energy to participate in these events can be draining for people living with Multiple Sclerosis. Getting back on your established routine can help reduce stress.
Set attainable goals – two weeks after the holidays and some of us have already broken our New Year’s resolutions. Revisit the goals that you had to start the year and make sure that the goals are attainable. Setting too high goal expectations can bring about unnecessary stress whereas goals that you can achieve could reduce stress.

As a person living with Multiple Sclerosis, understand that the stress of the holidays can leave you at a greater risk for an MS flare up. Managing that stress can help reduce the risk of an MS exacerbation. Exercising, eating right and developing a financial plan are some of the ways that you can manage stress. Following these tips and reducing stress in your life will help you avoid a post-holiday MS flare.

Resources

*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/

Sticking to My Resolution for Better Health and MS Symptom Management

Posted on January 13, 2014 by MSAA

By: Matt Cavallo

I’ll admit it. The holidays were not good to my waistline. My pants are tight and hard to button, and it is uncomfortable to reach down to put on my socks and shoes. At the end of the summer, I weighed in at 190lbs. I just got off the scale and I was exactly 211 lbs. With the weight gain, my New Year’s resolution was to start exercising more and eating less.

The extra weight is a problem for me and my MS. That 21 pounds has definitely made a difference in the way I feel. At 6’2”tall I don’t look that much heavier, I feel like a completely different person. The extra weight also seems to increase weakness and tingling in my legs. Also, my energy levels have dropped and my fatigue has increased. I find myself waking up later and later to walk my dog and the walks are becoming shorter. It is already halfway through January and I am not making progress on my goals.

I was talking with my wife who told me that it takes 21 days to change a behavior. Often with resolutions, we start with the best of intentions, but don’t stick with it long enough to change our behaviors. This has been the case with my diet and exercise resolution. I started out strong for the first couple of days, but have regressed to my old ways.

However, my old ways are not good enough for me. In living with Multiple Sclerosis, it is important for me to take charge of the areas of my health that I can control, like diet and exercise. If extra weight is going to make my MS symptoms flare up, I need to fight through the fatigue and get control. To do this, I am going to create a Wellness Journal. This journal is going to track my daily exercise routine and food intake. The reason for keeping these journals is to keep myself accountable. If I keep a record of my progress everyday then I will be more likely to stick to my resolution. New Year’s doesn’t have to be the only time of year we reassess life and develop goals.

Successful Goal Setting Tips

Keep goals realistic: Don’t set yourself up for failure by aiming for something that is completely unachievable. It is best to start with a small goal and work towards bigger goals as you accomplish them.
Create a plan that works for you: Figure out exactly how you can accomplish your goal and write down specific actions that you will take.
Stick to your plan: Since changing a habit takes about 21 days, perform that habit every day to make it a conscious part of your day.
Keep a daily journal: Write down what you do every day to hold you accountable. This will also help you identify obstacles that may be holding you back.
Don’t give up: Even if you slip up on your journey, forgive yourself and start fresh they next day.

I am also going to post my 21 day journey on my personal blog at www.mattcavallo.com/blog. By making my journey public, I am holding myself accountable to all of my readers, as well. My hope is that my story will also motivate others struggling with sticking to their New Year’s Resolutions or any goals for that matter to get back on track.

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.

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:

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/

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

2010 – An MS Relapse for the Holidays Part Two – Recovery

Posted on November 15, 2013 by MSAA

By Matt Cavallo

As I sat in an infusion suite chair to treat my holiday relapse, I started to feel really sorry for myself. I wasn’t sure what I had done to deserve this MS fate. I thought about my young boys and how unfair it was to them that their dad was having another relapse. I thought about the additional burden that this relapse was putting on my wife, having to care for two toddlers on her own. All this was happening during the holidays, just two months after I had gone through an anterior cervical fusion. To top it off, I was experiencing these uncontrollable emotional outbursts, or PBA as my neurologist called it, which were embarrassing me to the point of not wanting to go out in public.

Then my thoughts changed. I knew at that moment that instead of feeling bad for myself that I was going to have to reach deep down and pull myself together for my wife and kids. My wife is a stay-at- home mom and I am the sole provider, so I knew that if I didn’t get my act together, our quality of life as a family was going to go downhill and fast. I needed a plan.

Steps to Recovery

Be honest – During this relapse, I had convinced myself that it was every factor besides MS. I let the symptoms go on for too long and they were affecting my home and work life. I was going to have to be honest with myself and others about what I was experiencing and that it was related to my MS.
Reduce additional holiday stress – The holidays add stress to an already stressful life. If I had to go food shopping or present shopping, I would go at off hours like late at night to avoid the stress of a crowd. I made lists to prioritize my tasks and would check items off the list. For a list of more ways to reduce holiday stress, check out Angel’s Holiday Hustle Blog.
Gain control – When my emotions began to get the best of me, I would take a break. MS emotional outbursts can come on at any time. A good way to manage emotional outbursts is to remove yourself from the situation, take deep breaths or find a distraction. My favorite distraction is to walk my dog.
Do not take on too much – I have a habit of overdoing. During the 2010 holiday relapse, I learned to enjoy the simple things. Holidays are about spending time with family and friends;try to relax and enjoy that time without overdoing it.
Talk to your doctor – I waited too long to see my doctor. If you are experiencing symptoms, you should contact your doctor as soon as possible.

As the calendar turned to December in 2010, I was feeling like the worst was over. The medicine had run its course. I was feeling back to my normal self. Gone were the emotional outbursts, weakness and fatigue. I was back to normal at work and home life now returned to the joy of watching my boys. I didn’t bother with the stress of trying to compete for deals on Black Friday or hanging Christmas lights from the rafters. Instead, I realized that the true meaning of the holidays was to be there in good spirits for the ones you love. As Thanksgiving 2013 approaches, I am thankful for everyone in my life and continue to enjoy simple stress-free holidays with the ones I love.

Happy Thanksgiving, everyone!!!

References:

https://msaablog.wpengine.com/holiday-hustle-and-bustle-tips-for-people-living-with-multiple-sclerosis/

http://www.healthline.com/health-slideshow/pseudobulbar-affect-multiple-sclerosis

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