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?

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.

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

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.

Do something that makes you feel strong

Posted on January 22, 2014 by MSAA

I am not nor have I even been a “gym rat.” The one year in school I did a sport I picked track. Each person had to pick three events. I picked discus, hurdle jumping, and the long jump. Most of my time was spent lounging on the grass with my friends while we talked and let the real runners go around the track (you could only throw discus or do hurdles when the areas were set up).

Nowadays when I read fitness articles about people running marathons or races I am glad for the people involved and happy to hear about them meeting their own goals and objectives. But I know I am no runner and never will be. In fact, running causes me exercise induced headaches.

But here is the important thing, after trying many activities over the years I don’t let the gym intimidate me anymore. While there are things I know I don’t want to do or that don’t make me feel good (i.e. running) I have also found activities which make me feel strong, and competent, and healthy.

Yes, my arms might be the equivalent of small twigs, but put me on the rowing machine and I am a goddess. For 20 minutes on the rowing machine I can glide back and forth and feel l that I am powerful and going somewhere with my fitness.

I have also learned not to let other people’s perceptions impact my choices. For a tiny person I also enjoy lifting. Yes I might max out at lifting 30 lbs., but 30 lbs. for me is really good. I’m not trying to be a body builder, just improve my own health and wellness, so I’m not going to care if I’m the only woman on the lifting machines or that my weight limits are low.

Finding a fitness activity or plan that works for you is the most important thing in maintaining a plan, and by choosing something that makes you feel strong and powerful and energized you have a built-in incentive to keep going back.

What activities motivate you?

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.

Got a question? Chat with us.

Posted on January 10, 2014 by MSAA

If you haven’t already tried it out, check out MSAA’s Chat feature…

From Monday through Friday from 8:30 AM to 5:00 PM EST, MSAA offers a one-on-one chat feature, allowing you to ask questions about MS while you browse MSAA’s website.

Chat about:

MSAA’s programs
MS information
Helpful resources

Our Client Service Consultants can help you by explaining programs offered by MSAA, locating MS resources, and finding other information that may be of help.

Check it out here.

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.

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