Let’s Get Together: 4 Tips for Maintaining Friendships

Posted on February 3, 2014 by Angel Blair

In a world full of chaotic days filled with busy agendas and routines, it’s difficult to maintain some relationships you hold with others. Promises of “let’s get together” are sometimes broken, not that it’s done purposefully, but at times it’s hard to manage all the expectations in a given day.

Certain tasks are given priority, while others are pushed to the side to wait for another day. This is a realistic expectation in the 21^st century; people are just plain busy! So what can you do to keep the relationship connections going, even if the world is pulling you in all sorts of directions?

Here are some ideas to stay connected:

Set aside a specific time during the week that you plan to call or get together with friends/family. Work it into your schedule so that you know it is part of the agenda you plan to keep.
If you struggle with remembering plans you’ve made, set a reminder for yourself. Make a note and keep it somewhere it can be easily seen, or set an alarm on your phone for the date.
Have the other person contact you! If it’s difficult to remember to reach out, request to have that person reach out to you.
If something occurs that interferes with your plans, make an effort to reschedule it as soon as possible; that way, it’s already planned for another time.

How do you stay connected?

My MS New Year’s Resolutions

Posted on January 31, 2014 by Ashley

So, the usual New Year’s resolution has to do with being healthier, losing weight, etc. I’ve decided to make a resolution, but it has nothing to do with what I just listed.

So what’s my ‘big’ resolution? I plan on working on not being SO STUBBORN! I know that seems odd, but if you continue reading, you will understand.

I am a very stubborn person in many aspects in life, especially when it comes to my MS. Here are some things I plan on being less stubborn/hard headed about:

When someone offers me help, when it’s obvious I’m having a difficult time, I’m going to try and accept the help that is offered instead of being stubborn and trying to do everything on my own. While we don’t want our independence taken from us, and we like to do things on our own like we used to, sometimes it would make life easier to accept the help that is offered because that offer is coming from someone who obviously cares.

When my MS gets in my way of doing certain things, I’m usually too stubborn to stop what I’m doing or just take a break. I try and push through it all, but in the end I seem to suffer more in the aftermath of it all. So, I plan on ‘listening’ to my body & MS better, which will of course get on my nerves, but I believe it will benefit me in the long run.

When a loved one asks how I’m doing (and isn’t just asking it to be polite), I will not be so stubborn and disregard their question with an, “I’m Fine” answer… if they’re someone who genuinely cares about how I’m doing, I will give them a genuine answer. By doing so, I’m hoping that it will ease some of the tension I gather when holding all the information of “how I’m feeling” bottled up inside.

I’m also going to work on not being so stubborn about ‘remembering’ things. I always tell myself that I will remember a certain bit of information and I don’t need to write it down… but I end up forgetting the information in the long run, so I’m going to start making notes on my phone or a small spiral notebook.

Finally, I won’t be stubborn at my neurologist’s office, and I will ask the questions that need to be asked, and I will be completely honest when answering questions. I’ve realized that by being truthful about how I’m feeling, which isn’t good all the time, I’m not showing any weakness, but I show strength by being able to communicate this information.

So that’s my New Year’s Resolution…what’s yours?

The Other Part of Wellness: Emotional Awareness

Posted on January 27, 2014 by Samantha Schech

Throughout the month of January, we have discussed our personal journeys in wellness, but one piece has been missing. Often when we describe wellness, we think of physical activity and healthy eating. But one important piece that hasn’t been discussed is emotional wellness. Emotional wellness is defined as “being attentive to your thoughts, feelings, and behaviors, whether positive or negative” (University of California- Riverside).

In the daily hustle and bustle which is our lives, we forget to think about our feelings and often brush them off or push them away so that we can deal with another task we have been given. The idea behind emotional wellness is to not allow ourselves to push our feelings away.

Becoming aware of your thoughts and feelings can be difficult. One way to start becoming more aware is to journal. For those who have never kept a journal, starting is the hardest
part. In a previous blog, Dear Diary, I discuss some helpful tips to get started.

Perhaps writing about your feelings is not your thing, maybe talking more openly with a friend or family member would be easier. In everyday conversation, try tuning into your feelings and discussing them more openly. Avoid words like “good,” “fine,” or “OK.” These words are often used when asked how we are feeling, but are not “feeling” words. Some more descriptive feeling words can include “relaxed,” “alone,” or “delighted.” These words provide greater meaning to your emotions and will help you to better understand yourself.

In what ways do you maintain your emotional wellness?

References:

http://wellness.ucr.edu/emotional_wellness.html

What are your plans? Support the MS community this Monday

Posted on January 17, 2014 by MSAA

By Kimberly Goodrich, Senior Director of Development

Getting through the obligations of the Holiday season can be taxing. Sometimes it seems
as if every waking moment is scheduled with items to do or places to be. As we ease into the New Year, it’s nice to take a day to slow down, breathe, and do something that feels good rather than simply crossing things off my To Do list.

Despite the busyness of the holidays, I like to take a little time around now to reflect on how grateful I am for the opportunity to be with family and friends. Current research asserts there are numerous health benefits related to gratitude. Taking time on a regular basis to list the things you are grateful for yields better sleep, improved health outcomes and higher overall satisfaction with life. And it’s easier than pushups!

This brings us to Monday.

On Monday we will celebrate the spirit and generosity of Martin Luther King, Jr. In 1994, Congress declared the Martin Luther King, Jr. Holiday as a day of service. Dr. King believed we all had a duty to serve others and that through our collective actions, social problems could be solved. Rather than taking the day off, we are encouraged to find ways, big or small, that we can give, benefitting our community and spreading gratitude.

What are your plans for this day of service?

Keep in mind that not all service requires a great deal of time or money. Kindness can fill a need as easily as dollars. There are many ways to volunteer or serve:

Donate your time
Make a monetary contribution
Participate in Swim for MS
Make a purchase from a company that supports charitable causes
Consciously send positive, healing thoughts to someone
Perform random acts of kindness: smile at a stranger, hold the door for someone, or joyfully give directions

I’m looking forward to Monday. Having made a list of things I’m grateful for, I hope to awaken feeling rested and positive. I will share those feelings by spending time volunteering for a disabled sports group I’ve been involved with for several years. Afterwards I plan to make a donation to a few groups that are important to me and relax with family. Now that’s a To Do list to be grateful for.

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

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.

3 Simple Steps to Better Food Choices

Posted on January 8, 2014 by MSAA

For many, the New Year brings along new promises and new goals for healthy living. Making better choices and eating healthier come hand-in-hand. Over the years, I have adapted some techniques that I think have helped my family to make better food choices, and I wanted to share them all in this blog.

First, in order to make healthy food choices, you have to surround yourself with healthy options. If you don’t buy junk food, or have it in the house, you are more likely to make better choices. Let’s be honest, if it comes down to a cookie or an apple, I am pretty sure I’ll choose the cookie. But if it’s between an apple and some strawberries, it’s a win-win situation! By planning what is available to you, you are setting yourself up to make good choices.

The grocery store can be very intimidating and stressful, especially if you are hungry, which brings me to my next point: always have a snack or a full meal before shopping. This will prevent the cravings purchases, and you won’t be distracted by your stomach. It helps to have a grocery list with you and to only purchase what is on your list. I like to look at the store circulars beforehand and make note of the sales and write these items down on my list. Only purchasing the items on my list helps me to make better choices, as well as helps with my food budget.

Speaking of food budget, one thing that I have found helpful over the past couple of months is creating a weekly “menu” for my family. Usually on Sunday, I will pull together my local circulars and look at the sale items. The majority of my food budget goes towards purchasing meats, so this is where I start building my meals. I have my “go-to” recipes and start from there. Maybe chicken with vegetables one night, some form of pasta another. Eventually I have formulated a “menu” for the week. Now looking at my menu, I will create a list of the ingredients I will need for those items, and place them on my grocery list. This helps to ensure that I purchase everything in one trip, for all the meals I will be making that week.

The food menu has helped my family make better decisions when it comes to eating. Knowing what is for dinner and knowing that I have the ingredients to make it prevents the “oh no, what should we do for dinner” scenario-which often leads to bad choices!

It took a while for this to become a practice in my house, and this may not work for everyone. I encourage you to take a look at your food purchases and try to make some changes that will work for you.

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:

*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.

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/

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