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

MSAA is very proud to present our Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the MSAA Art Showcase submissions.

February 2014 Artist of the Month:
Lucinda Mierek – Anderson, SC

 Pretty Petals and Peaches by Lucinda Mierek

“My art has changed because of my fatigue and loss of concentration. My images used to be tight and are now loose. The content was edgier and is now more mainstream. However, my color use is getting better possibly because I’m losing my vision and am trying to compensate. I need more energy to do my art and haven’t figured out how to get it.

Even with my problems I feel fortunate. I still walk, drive, and tend to my yard.

My daughter and I still enjoy our time together. She pushes me to do more art. She seems to be my biggest fan!

‘Pretty Petals and Peaches’ is acrylic on matte board. It is very loose in comparison to the detailed older work of mine. I like the color usage of my “MS era.” I have learned to take life a little less intensely and use color more intensely. My work has changed for the better.”

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

MSAA’s Next Art Showcase for 2014

Thank you to all of the artists who were part of last year’s Art Showcase for artists with multiple sclerosis. The wonderful artwork and personal stories have been inspirational to many who have visited our online gallery and who have sent and received online art cards, celebrating the lives and talents of people living with MS.

MSAA will soon debut the 2014 Art Showcase in March as part of MS Awareness Month. So, get ready for some new artwork and stories to enjoy! As before, each month we will share with you an Artist of the Month with a new online card that you can send to friends and family to spread awareness of MS, while showcasing the wonderful talents displayed by artists with MS.

You still have time for one more look at last year’s collection! Then, get ready to enjoy the many new works to be featured in MSAA’s 2014 Art Showcase.

Check out the complete MSAA Art Showcase online gallery of artists with MS.

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The Expression of Love

Sunset holding hands photo

Valentine’s Day is a day where we open our hearts and make every effort to shower people with our love.  But for some, the open expression of love is a challenge.  Each individual chooses to share their love in a different manner; some opt for gifts, while others may write poems to express their love.

It is important to understand the ways in which you like to receive love and it’s important to have an open conversation with your partner regarding the ways in which you like to receive love and the ways in which you show your love.

There is a book by Gary D. Chapman called The Five Love Languages.  In this book, the author believes in the importance of being able to express your love in a way that is meaningful to you and in a way that your partner can understand.

Everyone expresses their emotions differently and has a different need when it comes to love.  This book helps to identify yourself and your emotional need, i.e. Love Language.  For example, my love language is Acts of Service; I choose to express my love through the act of doing something for someone else.  If I were in a relationship with someone who needs Words of Affirmation to feel love, the relationship may be stressed because of the differences.

Understanding and knowing your Love Language provides you with a great opportunity to have an open discussion with your partner about your feelings and needs in your relationship.  Take some time to discuss this with your partner and find ways to identify it in your day to day.  Perhaps true acts of love are being overlooked, simply because they are not in your Love Language.

This Valentine’s Day, how will you choose to express your love?

MSAA does not endorse the purchase of any specific product(s). Rather, any brand names are mentioned solely as an informational resource.

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Let’s Get Together: 4 Tips for Maintaining Friendships

Life Balance Diagram Showing Family Career Health And Friends

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 21st century; people are just plain busy! So what can rsz_shutterstock_14174770you 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?

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My MS New Year’s Resolutions

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?

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

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, Jeris blogwhen 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.

 

 

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The Other Part of Wellness: Emotional Awareness

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
shutterstock_73933420part. 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

 

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How do you treat your MS?

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.

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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.

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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.

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Do something that makes you feel strong

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 Woman Using Dumbbell To Improve Her Musclesglad 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 rsz_shutterstock_4273636 (1)and energized you have a built-in incentive to keep going back.

What activities motivate you?

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What are your plans? Support the MS community this Monday

By Kimberly Goodrich, Senior Director of Development

Getting through the obligations of the Holiday season can be taxing. Sometimes it seemsMLK Day with logo
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.

mlkday200x200On 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:
MLK Day infographic

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.

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*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.

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Tips for Avoiding a Post-Holiday Multiple Sclerosis Flare

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

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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/

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