February 2016 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.

February Artist of the Month:
Jennifer Atwood – A Wedding Centerpiece of Rose Balls and Orchids

 A Wedding Centerpiece of Rose Balls and Orchids

About the Artist:
“I was officially diagnosed with MS in 2007. Since then I had to retire and collect SSDI. I love watercolor but that was not my best media of my art degree in college. I now do this for my own satisfaction and the least expensive art I can do at home. I am 57, married, and have 4 daughters! All except one have left our nest, the youngest is 21. My husband Edward and I have been married 11 years.”
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Be inspired – please send an online card featuring artwork by MS artist Jennifer Atwood and spread awareness of MS and MSAA.

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January 2016 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 new submissions.

January Artist of the Month:
Janet Laycox – Winter

 Janet Laycox - Winter

About the Artist:
“My name is Janet Laycox. I was diagnosed with MS in 1994. I have Secondary Progressive MS and use a walker to get around.

I always feel so good when people tell me that they are amazed at how much I do. Yes, as most of us MS’ers know, we can do what anyone else does but in our own way. I have been volunteering at the West Milford Animal Shelter for 12 years. I am also a volunteer at our support group for MS, the ADA committee for my township and the Passaic County Council on Disability. A few of us from the Squeaky Wheels MS support group thought it would be fun to join in a community center oil painting class.

Well here is one of the first oil paintings I ever did. I must say I really enjoyed it, will continue and hope to improve.”
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Be inspired – please send an online card featuring artwork by MS artist Janet Laycox and spread awareness of MS and MSAA.

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What Webster Doesn’t Tell You About MS

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Webster’s Dictionary defines MS as: a disease of the nervous system that causes the gradual loss of muscle control. But for anyone experiencing multiple sclerosis on a daily basis, you know that’s only half the story. Our fantastic contributor, Stephanie, wrote an article about the “Lesser Known MS Evils” and the community loved it.

Here are some of the odd, unexpected symptoms our MS community experiences:

“It itches, it burns, it’s even numb!”

  • Itching
    • The itching has been the most annoying for me. It always happens in one part of my back, and doesn’t stop with scratching
    • My hands itch all the time. I always thought I just had dry skin!
    • I get itchy skin all over my face and even my eye lids!
  • Burning
    • My tongue has felt burnt since I was diagnosed a little over 2 years ago. 
    • The burning has been so bad
    • It literally feels like I’m burning. I get so hot and sweat just pours off me!
  • Numbness
    • I can never tell if I’m cold or hot!
    • Sometimes the left side of my face just decides to go numb.
    • I get so much numbness. You would think if it’s numb, it wouldn’t be able to hurt. But nope. I get both 

“It’s like my body forgets how to…”

  • Swallow…
    • Nothing like having to explain that my body “forgot” how to swallow
    • I had trouble swallowing when I first was diagnosed. Took me hours to finish dinner!
    • I regularly choke on my own spit.
    • Mine mainly happens with drinks, especially warm ones, and every so often I “choke” for no reason. It can be especially embarrassing at work
  • Talk…
    • Finally some validation for being a “Low Talker!” Now, when my husband says, “Why are you screaming at me?” I can justify it!
    • The cadence of my speech has definitely altered over the last 2 years.
    • My voice has been shot for years and I can’t seem to pronounce basic words anymore
  • Breathe…
    • Sometimes my body forgets if it was breathing in or out…not a good feeling, especially when I’m alone.
    • I definitely experience the breathing and swallowing issue, that is so painful and scary
  • Write…
    • Itching is one of my worst also my handwriting has gotten so bad.
    • Oh the handwriting. On bad days, my penmanship looks like a 5 year old attempting to write with their non-dominant hand.
  • Think…
  • The only way I can describe it is like a short-circuit feeling in your head.
  • My family has been the saying that I’m losing it. YES! That’s exactly how I feel!
  • It’s like pregnancy brain…but ALL THE TIME

How about you? Any strange symptoms you’ve experienced from your MS? Maybe ones you didn’t even know could be due to your MS? Share with us in the comments!

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December 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.

December Artist of the Month:
Bob Donner – Winter Birches in the Snow

 Bob Donner - Winter Birches in the Snow

About the Artist:
“I have MS, but I don’t let that define me. In my wheelchair, it’s obvious that I’m physically challenged, but I’d much rather be known as the ‘artist’ in the wheelchair.

Shortly after my diagnosis, I was on my computer one day and, on a whim, drew a bear using my mouse as my ‘pencil.’ It was far from perfect, but resembled a bear well enough to capture my interest. I began steadily developing the skill, and now most of my day is spent at my computer, mouse in hand, creating images on the screen.

When away from home, I’m observing everything around me, wondering how I would draw it. I especially like the drama of sunrises and sunsets. Each one is a unique display lasting several hours. My advice: Watch as many as you can, with the wonder of a five year old, and the eyes of an ‘artist.'”

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

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You’re Hot and You’re Cold

There’s no doubt that weather can have a marked affect on MS symptoms, but the question we posed to the MS community is: which season is worse for you? The community was evenly split between the two seasons-–for some, the summer heat can be unbearable, but for others, the bitter chill of winter is enough to make you research human hibernation.

See what they had to say and which faction you below to:

Baby It’s Cold Outside

  • Everything is sensitive
    • Even a slight chill causes bone-shattering pain for me
    • Even temps of 50° can leave my feet blistered with frostbite. My shoes in winter are 2 sizes bigger, just to accommodate extra socks.
    • My skin feels like it’s covered in needles
  • Can’t control the spasms
    • Cold causes major muscle spasms in my feet, legs and back!
    • My legs hurt from muscle spasms and I’m even more clumsy because my hands are numb
    • Cold makes me spasm more
  • My muscles are stiff and painful
    • Just being outside for 10 minutes in the snow and I lock up like a mannequin in a window
    • The cold kills my hips
    • My cold body feels stiff and won’t move
    • My legs are in constant pain in the winter

It’s Getting Hot in Here

  • Humidity is my kryptonite
    • Humidity is like wearing cement boots
    • When you add humidity to heat, I’m a dishrag – just done for the day
    • Humidity is intolerable – like having an anchor tied around my waiste
  • Heat sucks the energy right out of me
    • It’s a struggle to walk; I feel weak like I’m melting.
    • It makes each foot feel like 200 pounds
    • I have such a hard time walking; I call it drunk legs
    • I wilt like a weed in the Sahara!
    • Heat makes my muscles like wet noodles
  • I can’t think straight
    • Heat shuts me down
    • Heat causes my brain to just go flat, like I’m in a steam fog
    • My brain just doesn’t work in the heat

Stuck in the Middle with You

  • Any extreme temperature is awful
    • Extreme temperatures, either way, affect me very badly
    • Heat makes me feel rubbery and the cold makes me walk like Frankenstein
    • I hate extremes of both – heat makes me fatigued, cold makes me numb
  • I thought I hated one, now I hate the other
    • I used to say that heat was my kryptonite. It still is, but now I find that any mildly extreme temperature whacks me out
    • It used to be just heat but last year the cold was very hard too
    • My MS hates the heat, but I hate the cold.

The general consensus amongst the community seemed to be that 65-70 degrees is the ideal temperature, so spring and autumn take preference. But how about you? Which camp do you fall in—hater of heat or contempt for cold? With the colder months approaching, here are some tips to ensure you’re prepared for the impending weather!

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November 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.

November Artist of the Month:
Shana Stern – Austin, TX

Shana Stern - Karma

 About the Artist:
“This is my 15th year of having MS. While I try not to let MS define me, it dictates much of what I can and can’t do. My vision’s a challenge daily. My morning fatigue is debilitating. But I have something in which I can get lost in and forget all of my problems – my art. Since I can’t hold onto a brush, I paint only with my fingers. Getting lost in the music I paint to and helping the colors dance across the canvas has become my mental, spiritual, and emotional therapy. I’m so grateful for MSAA for all that they do and for showing the world that, yes, we may be knocked down a bit – we may have to work a little harder – but we are capable of great things, such as bringing beauty and art into the world.

I have MS. But I am an artist.”
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Be inspired – please send an online card featuring artwork by MS artist Shana Stern and spread awareness of MS and MSAA.

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A Short Fuse with MS – Community Feedback

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Tick, tick, tick…boom! That’s the sound of explosive “word vomit,” the result of a broken brain filter, the final moments of a shortening fuse. Many MS-ers have experienced this 0-60 build of anger in situations that would normally cause little concern. So, our fabulous contributor, Lisa Emrich, decided to do a little digging and see if this shortening fuse was actually linked to MS. Her article was a hit! While the research data may not be clear-cut, the community’s reaction certainly was:

This is so me!

  • THIS IS ME!!! I have a very short fuse and very little “filter” on what I say when I “blow.” I don’t mean to act like that and it upsets me when I lose it, but I can’t seem to stop it either.
  • This is me, too. I’m a really nice, caring person but…with a really short fuse. I also tend to speak without thinking, which has gotten me in trouble.
  • I’m the same way! And I don’t mean to be. I have never been like this before and when I say “it’s the MS” I get the “yeah, right” look from some people.

It’s worse when I multitask.

  • I find that when there is too much going on around me I cant keep up, and it is so aggravating!
  • If I’m doing just one thing and then end up having to multitask AND answer questions or listen to someone talk, I break down.
  • My fuse goes when there are multiple people/activities demanding my attention. I’ve discovered that I can only focus on one thing at one time. When that one thing is taken care of, then I can usually move to the next thing.

Sometimes I just want to scream “Shut up!”

  • As soon as it starts I try to tell people to stop and hush for a bit, but they don’t understand, or they roll their eyes, or they keep talking,. Then they comment on how they AREN’T talking. My point is, there is never silence, and sometimes, I need silence.
  • The fact that people in the office feel the need to yell because they don’t seem to have inside voices just makes it that much worse.
  • Some people just know how to push the hell out of my buttons!!!

My poor family gets the brunt of it.

  • The only way for me to deal with it is to declare to my three teens “I’m way off my A game today, so please bear with me.”
  • I am so frustrated, and it is ruining my relationships with people, especially my poor child!
  • I’ve found that too many demands for my attention at one time creates a very unlovable person—my family puts up with a lot.
  • I hate it. It requires, love, patience, and understanding from the spouse!

I’m not me; this isn’t who I am.

  • I have done a complete 180 since my diagnosis in 99. I used to have a REALLY long fuse, but I’ve started snapping more and becoming more passive-aggressive.
  • I don’t even know who I am anymore!? It’s so hard.
  • I can blow up in a second if things aren’t the way they’re suppose to be, and that’s not me!
  • I never had this issue before. Now I tell people that “my bitch switch has a hair trigger.”

Does this sound familiar? Have you experienced an inexplicably short temper? Share your experience with us!

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October 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.

October Artist of the Month:
Bean Fairbanks – Seattle, WA

 Bean Fairbanks - Blowin in the Wind

About the Artist:
“All of my life, I have been part geek and part artist. Since 1987, I have been living with multiple sclerosis. One of the consequences/opportunities of MS has been that I have had to reinvent myself over and over again to maximize my current talents and surmount obstacles. That has been true of my career as well as my art work. Over the years, I have crafted with charcoal, pen and ink, pastels, acrylic and oils as well as my first love: textile arts.

Now most of artwork is augmented digitally. My laptop is much more forgiving of my hand tremors than pen and ink! The computer allows me to bring my artistic vision to light. Art remains my inspiration, therapy, passion and a means to communicate. My artwork is as eclectic as my moods, whether reflecting frenzy, sensuousness or the bare essence of being.”
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Be inspired – please send an online card featuring artwork by MS artist Bean Fairbanks and spread awareness of MS and MSAA.

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September 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 MS Art Showcase online gallery to view all of the new submissions.

September Artist of the Month:
Barbara Hall – Jersey Shore, PA

 Barbara Hall - Autumn Walk

About the Artist:
“I believe this is my fourth year entering the MSAA Art Showcase. I continue to take painting classes and hope that I am making progress. My MS might have affected my handwriting but not my paintbrush! I hope to continue to paint through 2015. I am honored to be included with all these talented artists.”
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Be inspired – please send an online card featuring artwork by MS artist Barbara Hall and spread awareness of MS and MSAA.

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Fatigue and Insomnia – Community Feedback

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Fatigue is one of the most common symptoms among those with MS, but this fatigue is not the same as just being tired. And to make matters worse, it’s possible to be completely exhausted but unable to sleep. Our amazing contributor, Ashley Ringstaff, recently wrote an article called “Extremely Tired….but Can’t Sleep.” She says, “I can be completely exhausted where I can’t do a lot, I have no energy to even move all day, and when it’s finally time for bed, I will lay there hoping I will get some much needed sleep. But sometimes, that’s not the case.” As it turns out, many of our community members could relate to Ashley’s story. Here’s what they had to say:

I find that I’m always tired but have trouble sleeping at night

  • I need naps in the afternoon and then can’t fall asleep at night. I seem to wake up at 3:00am almost every night. I’m lucky if I sleep more than 4 hours at a time. It’s very frustrating, but at least I don’t have to get up for work.
  • This has been a new symptom for me in the last 12 months it is driving me crazy. I take trazadone for sleep, and it has worked for over 20 years but it doesn’t seem to work anymore. The summer also seems to make it worse. I am barely functioning during the day.
  • 
















 I haven’t slept more than a few hours a day for the past 6 months. I can feel the effect on my whole body.
  • MS has given me insomnia.
  • This happens to me all the time. I used to sleep 10 hours a night, anywhere, anytime! I miss that so much. But even getting some sleep now does not mean feeling rested.
  • This was me last night. I was tired but up until 5:00am, then slept until 9:30am. I’m exhausted but my body is ready to party.
  • 

‪This is me exactly! One reason I had to leave my job was because I was falling asleep around 3pm. At night my mind goes 100 miles per hour, so hard to shut it off but during the day I can’t remember what I was doing.
  • I’ve gone 7 days now with only 15 hours of sleep. In my opinion, this is this is the most irritating part of this disease.
  • People don’t believe me when I say how tired I am. They just don’t understand.

Even when I do sleep, I’m exhausted

  • I slept 10 hours last night and woke up exhausted. I spent the day riding around with a friend looking for yard sales. My body is so tired my legs don’t want to work now.
  • I think I sleep well for a while, and then I wake up. It takes hours for me to fall back to sleep, but I wake up every morning fatigued, and some mornings dizzy and disoriented.

I’ve found a few methods to help with my insomnia and fatigue

  • Meditating can help to “shut off” your brain when you’re trying to go to sleep.
  • I have tried multiple drugs, techniques, yoga, baths and meditation. I exercise frequently too, which helps when I am up for it.
  • I have had this on and off since being diagnosed in 2004. Some things that might help include taking a warm shower or bath a little before bed time or using a little lavender essential oil on your chest.
  • I only get about 5 hours a night if I’m lucky. I lay down at 11 30 but my brain won’t shut down. I read and listen to music to relax enough. Last night I had to take my lorazapam to finally fall asleep at 3am.
  • I’m lucky to get 5 hours of continuous sleep any night. I have done the sleep study. I lost significant weight some years ago, which resolved the sleep apnea. I take naps when the fatigue has taken its toll. I have accepted insomnia as my normal. I find it easier to work with it than to fight it. I do some of my best work at 0 Dark-Thirty AM.

What about you? Do you have trouble sleeping despite being tired? Share with us in the comments!

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