June 2015 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2015 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 new submissions.

June Artist of the Month:
Paula Breiner – Tamaqua, PA

 Paula Breiner - Sunny Disposition

About the Artist:
“I am an MS Survivor. No, I am not cured; it means I live day to day with this disease. I recently took a painting class to help strengthen my hand, to better my thinking and concentration, and because I haven’t drawn or painted since high school back in the 80’s.

I was diagnosed in 2006 with MS. Over the years I have developed more symptoms, and last year I was put on Rebif. I have a very loving and supportive husband whom I will celebrate our 30th anniversary with this November. We have two beautiful daughters and four amazing grandkids.”
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Be inspired – please send an online card featuring artwork by MS artist Paula Breiner and spread awareness of MS and MSAA.

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Winding Down from the Holidays

As the holiday season comes to a halt, signs of the New Year are all around us. While families are taking down and storing away decorations, stores are preparing for the next holiday. Windows and aisles are filled with red and pink candies, hearts, and flower holding bears. With all of the displays and reminders about Valentine’s Day, it’s hard not to be swept back up into another holiday.

January is typically the month of New Year’s Resolutions, with everyone vowing to make changes or set goals for the new year. January can also be a time for a re-set. Before jumping back into another holiday, take some time to focus on you and do something that you enjoy, or perhaps have put off over the last few months.

Changing the mentality of getting a jump start on the new year to one of sanctity and calm, may be beneficial for people who find themselves getting caught up in the hustle and bustle of life and forgetting to care for themselves.

Take some time during the day, even as little as 10 minutes, to do something that makes you happy. Sometimes even just sitting in a quiet space and taking a few deep breaths can calm you and prepare you for your next task. It is OK to take time for yourself. By doing so, you are allowing your best self to come forward.

How do you plan to care for yourself this year?

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The Heat and the Cold Can Impact MS Symptoms – Our Community Members Share Their Experiences

For many people with multiple sclerosis, heat can exacerbate MS symptoms. One of our contributors at MultipleSclerosis.net, Matt, even moved from southern California to Colorado, partly to escape the heat. However, another one of our contributors, Jackie, experiences MS symptoms, especially in her legs, when it is cold. It seems that temperatures affect people with MS in multiple ways, and in a recent article, Stephanie shared her experience. While she is extremely cold during the day, she finds herself turning into a “human torch” at night. As it turns out, many of our community members also overheat at night, or have other issues regulating their body temperature. More than 30 people in our Facebook community commented on Stephanie’s article, and here’s what they had to say:

I have night sweats too!

  • I had no idea that this was a symptom of my MS, which I was only diagnosed with 2 months ago. I also found out in an earlier post that “sensory overload” is part of it. Just ask my family, Saturday I was a complete jerk with EVERY little noise and I had no idea why. At least I can feel validated and not completely crazy!
  • I thought I was the only one who suffered from these strange symptoms! I prefer the heat over the cold, which makes my extremities hurt. And I freeze constantly – until I go to sleep. I bury myself under the covers to get warm, but wake up in the middle of the night kicking them off of me because I’m drenched in sweat. It’s miserable and ridiculously confusing!
  • I’ve been having night sweats for awhile and my neurologist keeps saying it is not my MS, but it didn’t start happening until a year after my diagnosis.
  • Fantastic post. This is something many people with MS experience as part of life with the condition and will help other people see they are not alone.
  • I, too, prefer the warm, not hot, weather. I freeze all day, but I can’t stand the covers on in bed.
  • I thought I was the only one who had the strange symptoms. I haven’t slept because of it for now 3 weeks, and it’s driving me insane.
  • I thought it was menopause possibly starting early. I never thought my MS did this. It’s horrible, especially when it’s actually cold.
  • I have the same problem with night sweats. I’ve had every test and no one can explain why I have them. Thanks for the article. I don’t feel so alone.
  • Yes, I definitely relate! I turn into a Bunsen burner especially late at night and no matter how cold it is I sweat like crazy without even getting all that over heated or hot. I still wake up sweaty.
  • ‪I sleep with ice packs all year long here in Michigan.
  • This is me, 110%! I’m freezing all day then a human furnace at night. And I can’t handle sleeping without a heavy blanket either from years of doing so before these symptoms.

I’m cold sometimes, and really hot at other times.

  • My husband and I had to resort to having our own bedrooms, and I often keep a fan on and have eight blankets. This is all because my body temperature is yo-yoing.
  • My feet always feel cold even though they’re warm especially when I’m in bed
.
  • I get really cold then I get really hot. It’s off and on.
  • I have that problem too. I thought it was just me, so thank you for posting this. I get night sweats to the point that my shirt will be wet.
  • I know EXACTLY what you mean! I am freezing cold, and burning up at the exact same moment. But it’s not just at night. I am always uncomfortable.
  • I thought it was just me! My body is like a house with no insulation. I’m either too hot or too cold.
  • I’m always warm – my hot flashes ended some time ago. My feet are always cold, even when it’s 100° outside. My circulation is getting so bad.

My Body temperature is hot all the time!

  • I’ll trade with you! I am like a human torch all the time. I never cool off even in the winter. People think I’m crazy because I don’t wear a jacket even in the winter. It makes it very hard to sleep because my husband is always cold and I am always hot.
  • I live in IL and it’s Dec. 22. I still wear shorts and a short-sleeved shirt to bed. I still sometimes wake up sweaty.
  • I don’t get cold often, but I’m always really hot since being diagnosed. It’s winter and I’m running my fan on full blast!

I’m cold all the time!

  • The only time this overheating ever happened to me was when I was taking Rebif. Now I am a thermostat nightmare – freezing cold all the time, layers and layers of clothing, and at night I have found the one thing to help go from hot to cold with minimal effort – believe it or not –  is a sleeping bag. The silk of the bag stays cool, and it warms up like a champ too so it’s easy to toss on and off at a whim without too much effort while TRYING to sleep.

Other:

  • I also find that using a sleeping bag helps me better adjust temp at night. I found this out by accident in September. Long story short, I was homeless from March of this year until December first. I was living in my car and when the season started shifting here in New England I finally borrowed a sleeping bag for the cooler nights. I slept much better with the sleeping bag than I did with blankets. My car would get stuffy at night with all the windows rolled up yet it was also chilly. The silkiness of the sleeping bag was comforting when I was feeling chilly and it was soothing to lie on top of it when I was feeling a little too warm. Now I have finally moved into an apartment and I don’t want to give the sleeping bag up.
  • I don’t do well in the heat. AC is for me in the summer, but I have been having cold hands and feet this winter nearly all the time. I am sitting in front of a floor heater nearly all the time now, and I live in California. There’s no way could I ever go or live where there is snow!
  • I don’t usually get hot or cold, but lately in the last 6 months I have sweating episodes that last about 20 minutes where I am drenched. I’m way past menopause so I know that can’t be it.

What about you? Do you have trouble regulating your body temperature? Do you have a hard time with either hot or cold temperatures? Please share with us in the comments!

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End of Year Reflections

There’s a song lyric that says “It’s hard to remember we’re alive for the first time. It’s hard to remember, it’s hard to remember, we’re alive for the last time” (Modest Mouse). This poignant sentiment sums up a lot about our daily lives.

When you’re in the thick of your day-to-day routine it is easy to become bored or stagnant. When you are struggling with something it can be reflexive to focus only on the challenges and obstacles in your way as opposed to the strength and persistence required to make it through.

It’s easy to get caught up in just another day and forget about the wonder and marvel of life, and all the precious moments that you get to experience. True, not all moments are wonderful, but when you lose the spark of hope and wonder you lose something bigger and not just your inner philosopher.

First, cut yourself some slack, nobody gets everything right. Reflect and recognize that each day is a new one. If you are so inspired you can chose to think that with each day comes opportunity and choice. We may not be able to control everything but we can control some things.

Second, remember that no one’s life is endless. When reflecting on your own precious life you may find that there are opportunities and adventures you want to undertake. As 2014 winds down think about the journeys (metaphorical and physical) that you want to take and write them down. Some people might call it a bucket list, you may never get to all of them but you can keep trying and remembering.

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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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Holiday Hustle and Bustle: Tips for People Living with Multiple Sclerosis

The holiday season is upon us! As Halloween has come and gone, we find ourselves faced with the upcoming months of holiday preparations. Cooking, baking, shopping, wrapping, and family visits are just some of the tasks individuals embark upon during this busy time. Because the holidays can be a bit hectic, it’s helpful to make preparations and plans to combat the chaos that can ensue during this festive time. To make time for activities you enjoy and to reduce the stress and anxiety we all know can occur during the holidays, here are some ways to make the holiday celebrations more manageable:

  • Prioritize your tasks. Make a list of things you would like to accomplish, and order them in a way so that important things get done first.
  • Take breaks. The holidays can be both mentally and physically stressful on the body. Be sure to sit and relax in between tasks, even if just for a few moments.
  • Think “Potluck!” If you’re hosting the holidays at your residence, have guests bring something. They can bring their favorite dish or dessert to help contribute.
  • Ask for help. You can ask family members/friends to go shopping, clean, or help with food preparations for the holiday meal to lessen your work load.
  • Prepare in advance. Some meal preparations can be done ahead of time for a holiday gathering. The week of the holiday, spread out tasks that can be completed beforehand so that on the day of there’s less to do.
  • Relax and Enjoy! Even though the holidays can be stressful, be sure to take time out to enjoy the festivities and spend quality time with those you care for!

Tips for Dealing with the Holidays When You're Living With MS

What are some ways you prepare for the holidays?

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

MSAA is very proud to present our 2013 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.

November 2013 Artist of the Month:
Julie Crow – Damascus, VA

Jack - Baby boy - artwork by Julie Crow

From the Artist:
“After a couple of really bad falls from lack of balance and coordination, resulting in hip pins and a broken pelvic bone, my companion, Gino, an accomplished oil painter, brought some pastel pencils and a drawing pad to the hospital for me to have something to focus all of my energy on while I was immobilized. In the hospital and inpatient rehab, I drew pictures of friend’s pets and relatives. The baby is a friend’s first grandson, and I drew this from a photo taken at the beach. She was always there for me during the hard times. I have also drawn a few others for folks to show my appreciation for their time and their love. I’ve created a Circle of Hope link with MSAA…the amazing thing is that I’ve never painted or drawn. I truly could not draw a stick man before this last incident. I haven’t lately due to some problems, but am hopeful for tomorrow.”

Read more

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

Calling All Artists with MS:
It’s that time of year – MSAA is now accepting submissions for our 2014 Art Showcase! If you haven’t already done so, submit your best artwork by December 16th 2013 for a chance to be a part of next year’s Art Showcase.

Submit your artwork for the 2014 MSAA Art Showcase.

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Making Commitments When You Have Multiple Sclerosis

Before I got diagnosed with MS, I would make plans, mark off the ‘Attending’ box on RSVP’s that I received,and I could also just up and do something if there were plans made abruptly, without a second thought.

That’s not the case anymore; I can tell you that much. And I have a feeling I’m not alone on this…

Now, I’m not saying that since I got diagnosed with MS that I don’t want to attend certain events or go out with friends, etc. I still want to do those things; there are just different circumstances now.

I really hate cancelling plans that have been made or not attending something, (like a wedding) that I had replied I would be attending, but my MS isn’t on a “regular schedule.” I can’t tell people, “Well, on Monday, Thursday & Sunday my MS is not cooperative, so I can only do things on Friday & Saturday.” If only it were that easy, right?

So the reasons I don’t like making commitments to plans are because I don’t know how I’m going to be feeling on that day… or at that particular ‘part’ of the day. I know it seems as if I’m “blowing people off,” but that’s not the case. If I said I wanted to attend something, it means I really did. My MS is just not “allowing” me… Kind of like it’s grounding me, like my mom did to me when I was younger.

So now, when people invite me to do something that evening… or the upcoming weekend, I tell them… “I really want to! But I don’t want to make any promises, so let’s see how I’m feeling when the time comes.” For those people who are close to me, they understand my reasoning for saying this… others don’t, and I have to explain, which can be difficult with people who don’t have MS, or who do not have a lot of knowledge of the illness.

My main message on this blog… “Yes, I want to do things…. But sometimes my MS has other ideas that I can’t control!”

 

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Life with MS and Cognitive Issues: You Never Know What to Expect

By Jeri Burtchell

Ever since telling my family and friends I’d be writing a blog post for MSAA on the topic of cognition, they have been ribbing me. The irony of the most absentminded person they know writing about memory loss is too amusing to ignore.

All kidding aside, cognitive issues can be a serious and bewildering symptom of MS. One that can creep up stealthily and impact every area of your life–and it’s more common than you might think.

My reputation for forgetfulness goes back a long way, predating my diagnosis of Relapsing-remitting MS in 1999. I’ve had memory problems for as far back as I can recall.  However, how far back I can recall is debatable.

I start each day with my cognitive cup full. In the stillness of a quiet house at 5 a.m., I approach life hopeful for a day filled with accomplishments. Morning is when I do my best thinking. But I know what’s coming and I prepare in advance.

As surely as the sun crosses the sky, I’ll begin my descent into a foggy, cognitive swamp by midafternoon.  Having a plan that helps me get through the day without being overcome by frustration is kind of like having a little set of crutches for my brain.

A huge dry erase board serves as my calendar. Using multicolored Post-it Notes, I translate my life’s chores, celebrations and obligations into a color-coded explosion of reminders. When a fleeting thought of something important lands briefly on my conscious mind, I grab it and quickly trap it in a sticky note. The important thought is added to my calendar, displayed like a butterfly on a pin board.

Green Post-it Notes are workrelated and sprinkled all over the board. Yellow is for appointments and domestic duties; pink reminds me to pay the bills. Orange is for anything related to the kids, who have so many extracurricular activities that even a fully functioning brain would have trouble keeping up.

Although it all sounds good on paper, in reality, I’m grasping at straws. I frequently find myself herding well-intentioned sticky reminders from left to right in a multicolored cattle drive across the calendar as accomplishments go unfinished.

So why does this happen when I’m determined to plan out my day? Well, because of websites like Facebook and Pinterest. Or it could be as simple as someone asking me a question that leads my brain astray.

“Jeri, do you know where the phone book is?” my mother asks.

“No, Mom, let me look around.” I reply.

Fifteen minutes later, the Great Phone Book Hunt has yielded nothing, I end up Googling the number for her instead, and whatever task I was working on has slipped to the bottom of the cognitive swamp, totally forgotten.

Thankfully, even though my family members tease me, they are my safety net as well. Intuitively, everyone seems to have found their own way to help me stay on track.

My mother, who will be ninety next month, is an expert in the art of the gentle reminder. She keeps her own lists of what I should be doing and gives me a subtle nudge if she sees my memory falter. She does it with such finesse that a politician would be impressed.

The kids and grandkids know that telling me something important once is not enough. I need daily phone calls, texts, or emails to refresh my memory about picking them up at school or taking them to practice.

Although nobody gets angry when I come home from the grocery store without the bread or milk, there might be some exasperated eye-rolling when I explain that I forgot to even look at the list.

I once had to mail a package with only fifteen minutes to spare. I jumped in the car and raced straight there only to get out of the car and look around puzzled. I wasn’t at the post office. I was at the grocery store on the other side of town. Daydreaming about what to fix for dinner had apparently determined my route. Rather than obsess about how I could possibly have done that, I decided to make the best of things. I went grocery shopping.

Living with cognitive symptoms of MS can be challenging. It takes planning and teamwork to pull off a day that, for anyone else, would seem routine and uneventful. Failing at that now and then can be frustrating, but I try to keep things in perspective. As long as I haven’t forgotten to feed my family or pick someone up who was waiting for a ride, then I can forgive myself the other slips.

Living with cognitive problems isn’t all bad – in fact, there is an upside. I can read a good book several times and the ending still surprises me. I forget arguments as soon as they are over, so forgiving takes no effort. I could probably plan my own surprise party!

And even though my family might rib me about my memory from time to time, the simple act of everyone doing their part to help out seems to have brought us all closer together. I’ll have to jot a reminder to thank them for that – if I can remember where I put my Post-it Notes.

*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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Stay on the Tracks….

Many of us have taken different modes of transportation throughout our lives. Some of these modes have included various types of trains, trolleys, and subway cars,
all of which have one common purpose: to remain on the tracks provided to get to the desired destination safely. This may be an easier task for these transportation vehicles than trying to stay on track during everyday life. Keeping things organized and staying on course can be difficult with life’s unpredictable moments and events. This can be especially true when dealing with an illness like MS, a disease that proves unpredictable itself. So how does one try to stick to the tracks when life comes by and occasionally swipes you off course?

Here are some ideas on how to stay on track while dealing with life’s roadblocks:

  • Make lists! Prioritize your responsibilities and tasks so that you can make adjustments if something throws off the day’s expected course.
  • Write notes or use a tape recorder for the day. This can help you organize and remember things to be done. This can be especially helpful if something else comes up unexpectedly, you have the notes to remind you what needed to be done!
  • Reach out for resources and support. There may be ways to receive help to keep things in order for your routine. Asking others for help or making sure someone else is aware of your anticipated tasks/goals can aid in keeping things on track.

What are some things you do to try and stay on track?
 

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