April 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2016-17 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.

April Artist of the Month:
Debra Robert – Lake Worth, FL
Constellation des Colores
Debra Robert - Constellation des Colores

About the Artist:
“I have been painting for over 25 years. I have a BA in theatre arts and an MFA in film producing. My career has taken me around the world, working in live events/concerts/conferences for over 20 years.

Now diagnosed with Multiple Sclerosis (MS), I had to retire from my exciting, vibrant career. I am determined to put my energy into art full-time, surrounding myself in a world of color and light. I pull my inspiration from years of the lighting design, sounds and imaginative shapes from live performance production.”
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Living With MS: One (Careful) Step at a Time

By: Jeri Burtchell

I remember my first relapse. Early in 1999 my legs had gradually gone numb from the bottoms of my feet up to my waist over a period of two weeks. By the time I decided it wasn’t just a pinched nerve or something else that would go away on its own, I could barely walk. Every step felt like I was waist-deep in quicksand trying to push my way forward and sinking fast.

That was 17 years ago, and all but a few of my subsequent relapses have also affected my legs. Before I began my current MS therapy in 2007, I would often spend some of my time in a wheelchair during the recovery phase of the more intense relapses.

Although I have only had two mild relapses in the past eight years, it doesn’t mean I am living symptom-free. My legs have betrayed me many times over the course of the years, and my face has become intimately familiar with all sorts of things one’s face shouldn’t see up close — asphalt, dirt, and even kitty litter on one occasion when I tripped and did a faceplant right in the cat box.

So when writing on the perils of walking, I draw from firsthand experience (much to my chagrin).

Besides legs that tire easily, I’ve also developed drop foot. Drop foot is like having your kickstand come down on your bike unexpectedly. You’re tooling along fine when your foot drops mid-stride and causes you to trip over your own two feet, like flying over your handlebars.

So I’m terrified of walking without holding someone’s arm or using a cane, rollator, grocery cart or assistive device — especially when I’m traveling. In my mind my wheels are constantly turning, assessing the terrain, the angle of incline. Judging the surface for the traction I’ll get in the type of shoes I’m wearing. It’s mentally exhausting. I literally cannot walk and chew gum if I want to be competent at either task.

The Doozie of All Faceplants

It was 2010 and my best friend Karen and I decided to take the kids to the county fair. She had her niece and nephew, and I had my youngest boy, Alix, with me. I was wearing sensible walking shoes and told all the kids I’d just watch them ride the rides so I wouldn’t get dizzy and fall. I thought I had covered all my MS safety angles.

It was the perfect day. Laughter and screams of delight filled the blue skies. We ate popcorn and cotton candy, and strolled around until the sun began to set. By that time the kids had ridden every ride except for the Zipper.

The Zipper was halfway across the fairgrounds and as we headed over there for the final ride of the day, I began digging in my purse for the rest of the tickets. With both hands occupied, my feet decided they’d had enough. My left foot dropped, scraping the asphalt pathway we were walking on and I was catapulted into the air.

I landed Tim Tebow style, on one knee for a brief second before launching face first into the pavement. I heard my sunglasses scrape the ground before flying off and skittering away. My initial reaction was “Crap! Those glasses were prescription!”, but I calmed when I remember they were just $5 drug store sunglasses. Then I could focus on what really mattered — the bloody egg-sized bump growing over my left eyebrow.

Alix and Karen came rushing to my side and helped me to a nearby bench, then ran to get some ice. I just kept asking for someone to call an ambulance. With the ice bag pressed firmly to my head, I leaned over my knees trying my best to ward off the nausea that was overcoming me.

Before long I heard a voice.

“Ma’am, can you stand up and get into the vehicle for me?”

I’m thinking to myself, “What kind of an EMT would ask me to do that without even a cursory exam?”

“Can you hear me, ma’am?”

Finally I take the ice from my forehead and look up to see it’s a clown with a big red nose and a huge upturned white grin who is asking me to step into a golf cart. I was certain I’d knocked my brain loose.

After several confusing moments while we discussed the lack of foresight or budget allocated to their first aid preparation, he convinced me an ambulance was waiting at the perimeter gate.

Karen followed behind with all the kids in tow as we rushed to the hospital.

They ran a battery of tests that included everything but shaking a Magic 8 Ball. In the end, all signs pointed to a concussion. I have never felt so sick in all my life. I had two black eyes and a huge knot on my head. When I saw the eye doctor a few days later, he speculated that my sunglasses saved me from breaking my orbital bones.

I managed to come away from that experience without any residual physical effects, but one thing is certain: I had developed a newfound fear of walking. I never leave town without my cane, and if I go to a store for a loaf of bread I’ll be pushing it around in a grocery cart. It’s not that I need an assistive device to be upright, I just can’t trust my feet.

I used to fear balance issues as my body’s greatest source of betrayal, but drop foot has taken its place. When I begin to tire or know I will have to walk for more than 25 feet unaided, I deliberately high step, figuring if I pick my legs way up in the air, my toes have less chance of tripping me up. While it might look silly, I believe it has saved me from kissing the concrete on numerous occasions.

If it gets worse I think I’ll look into a brace, but for now I’m taking MS one (careful) step at a time.

*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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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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At This Time of Year

By: Bob Rapp

I am a partner to a person living with MS. My wife has been living with the disease for over 20 years and has done remarkably well. She has always been meticulous about her health. She eats well (except for the candy), exercises almost daily and is adherent to her medications. Things are not perfect but she has, and continues, to lead her life. She’s pretty tough and resilient.

A few months ago as some of her symptoms seemingly began to worsen, she had an MRI and the scan showed some new lesions. In consultation with her neurologist they decided it was time to change her DMT from the one that has been so effective for all of those years to a new medication that would hopefully better manage her disease. As people who have gone through this transition know, that is not as simple as it sounds. In some ways it is like losing a trusted friend, one that has been by your side for decades. You worry about the new medications effectiveness, you may experience side effects that you thought you left behind so many years ago and you worry about the future.

It is another of those unpredictable consequences of having MS. Another aspect that has to be managed. Another hurdle to be overcome. Another issue where the support of others is so important.

So what is my purpose in sharing this personal story during this holiday season? It is a simple one. To encourage everyone to enjoy these special days, celebrate what we have and the goodness in life. Laugh a lot and keep your friends, family and loved ones close. MS and the challenges it brings will be around but it need not consume our lives. Keep on living. Happy holidays!

*Bob Rapp is the Chief Operating Officer of MSAA. He has been a care partner to a person living with MS for more than a decade.

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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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Getting Off to a Good Start

There’s a philosophy about first impressions that states within a few seconds of meeting an individual we can evaluate who that person is and create an instant opinion about that person. As a social worker, I have never really understood that philosophy. Sure, by evaluating body language, tone of voice, or physical appearance we can get a sense of the person and what they may be experiencing at that moment. But it is not fair to cast judgement and say that the way a person presents in that moment is who that person truly is.

Isn’t everyone entitled to a bad day? It is impossible to be on point every moment of every day. The same can be said for individuals with multiple sclerosis. Individuals with the relapsing forms of the disease who experience periods of heightened symptom activities will experience good and bad days. Are you just supposed to stay out of the public’s eye during those bad days with fear of being judged in that moment?

As a society, we need to be more forgiving and open to learning about an individual before making a snap judgement. MS education can play a valuable role during this period. While an MS diagnosis does not define an individual, offering more information about how you are affected may help in providing some sensitivity and awareness to others about living with chronic illness.

As an individual, how do you come back from a bad day and present yourself again?

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When people say, “but you look so good!”

One of the more frustrating things about having an invisible illness like multiple sclerosis is having people tell you, “but you look so good!” It’s incredibly difficult to explain to others what it is like to live with MS, and because so many of the symptoms associated with this condition are not apparent on the outside, it seems impossible for those who do not have MS to understand. We recently posted a story from one of our community members who expressed her frustration about people telling her she “looked good”, and our Facebook community responded in support! Here are some of the comments that our community members shared!

People just don’t understand

  • I understand, I have had MS for 11 years and I hear it all the time, “you look good!” Well I don’t feel good! People just don’t understand this disease!
  • Don’t waste any more time trying to explain what you’re going through. Most people just don’t get it. If you have a support system, terrific. It takes too much energy to try to educate everyone you know about MS. Don’t be afraid to say NO. I’ve lived with MS for 25 years. In that time, most people I know have “gotten it” through my behavior and actions. Check with your local MS chapter. They have literature to explain MS. Join a good support group. It helps.
  • While these words are true most folks mean well its more an issue of them not understanding MS. They understand what they can see, that’s all.
  • I get “how are you feeling? You look good!!” almost daily. Some days I wish I looked like I felt so then maybe people would realize “oh, she’s a mother of four and looks like she feels terrible despite her busy/demanding daily routine”. Pep talks are good, and positive reinforcement is also good. Telling me I look good is pointless.
  • I always tell the people that I look so good at the outside because there is nothing beautiful left at the inside. It is rotten, so I will do everything to keep my outside pretty.
  • I just wish they could be in my body for one day!
  • That statement makes me feel like I do not have the right to feel bad, or to “sit out”. It says the person talking has a total lack of understanding of this disease.
  • It drives me nuts when I hear that! It diminishes my feelings. No, I don’t want to roll around in “whoa is me,” but heck, this is real.

People think I’m lazy

  • My family thinks I’m lazy and expects me to push through it. I’ve been a plumber for 25 years and a timber faller logging for 7 years… I could get disability, but I want to work, I just can’t over do it.

People mean well

  • I think many people mean well by saying it. The truth is, I don’t venture out when I don’t feel well. I had a cop question me using my handicapped permit earlier in the week – checking my ID against it and he said “these aren’t for convenience”. I told him that he should be thankful I felt like crap or I would tell him what I was really thinking.

I don’t feel like I look good

  • MS made me gain weight, changed my shoulder and my legs, and my eyes cross. My body hasn’t felt fit in years, so please don’t say that I look good
.

I don’t mind if people tell me I look good

  • I don’t have a problem with people saying I look good. All I can say is thank you.
  • I still like to hear, “you look good,” even if it’s not true.
  • I rarely talk to anyone about how I feel because they “know exactly how I feel because they do too”. Even though they don’t have MS.

What about you? How does it make you feel when someone says, “but you look so good”?

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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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Stress and the Holidays with MS

Can you believe it’s already that time of the year again for the holidays? With everything we have going on in our lives and tacking on multiple sclerosis with it, it can be very hectic.

The holidays are meant to be a time to be with family and enjoy ourselves, not stress over shopping, hosting parties, cooking, etc. Then you tack on the crazy weather we have been having on top of everything else, it’s just down right insane.

(Now maybe some of y’all are used to the cold weather, but it’s a bit of a shock to us down here in the South.)

So I thought I would share some of the things that I do, so that I’m not adding stress to my already stressful life. It’s hard to be completely stress free, so I’m not even going to attempt to say something like “stress free.”

Sometimes it feels like there aren’t enough hours in the day to get everything that we need to get done, completed.

For me, when the day is coming to a close, I feel like it’s family time and time to relax. Not to run around ‘till I’m exhausted getting Christmas shopping done, etc. I don’t have the energy and/or strength to stand in lines, to fight the crowds, and everything else that comes along with holiday shopping.

Many sales aren’t just limited to ‘in-store’ purchases, but are also online. One thing I’ve done in the past – and will do this year as well, is shopping online. I know it’s not the same thing as actually going to the store and buying things, but it’s better for me and my MS, so that’s what I’m taking in to account. I don’t want to run down my body or cause my MS to flare-up trying to shop for the holidays. Where is the fun in that?

You would be surprised on what all is offered online. I love shopping at Amazon, because they seem to have almost everything available because they have outside vendors. Plus, a lot of the time when you’re shopping online certain stores offer free shipping if your total price is over a certain limit. Even if you have to pay for shipping, I think that the same amount would go towards gas if you’re actually driving around and shopping.

Now, whether you are shopping online or in the store, see if they offer gift-wrapping. This is a very big problem for me. I have spasticity in my hands, so if I’m trying to wrap multiple gifts at a time, my hands start giving me issues, and then the wrapping isn’t so pretty.

If you enjoy doing your own gift-wrapping, try and make a schedule out of it, so that you aren’t wrapping everything at once. I’ve done that before, and it wasn’t nice at all.

I know that it can be annoying that we have to make certain changes in our ‘routine,’ but I feel that those changes are worth it personally. By doing some simple, small changes, I can make sure that I’m not going to ‘pay for it’ from my MS in the future.

If you’re hosting a holiday event at your house, kudos to you! I don’t think I could handle all that. But if you are one of those people, don’t feel like you have to do ALL of the cooking for the gathering. Ask family/friends to bring certain dishes. Have a little sign-up sheet online, Google Docs, or something.

Something I have come to absolutely love is my crock-pot. This way it prevents standing for a long period of time cooking certain things. I can throw things for a recipe in to my crock-pot and turn it on, and it’s one less thing to worry about.

I love getting recipes on Pinterest and similar websites. If you just Google search “Holiday Crockpot Recipes,” I’m sure there will be plenty of results to choose from.

One last note… If you are going to make a run to the store to get your ingredients for a recipe, or anything else for that matter, have a list put together. I like to organize my list by section; this way I don’t have to scan through the entire list every time I look at it.

Most importantly, have fun with your family and friends. This is a time to spend time together, and be thankful for what we have been blessed with. I know it’s easier said than done, but it’s okay to allow someone to help you out. There is no shame in asking someone to help out with simple tasks.

Happy Holidays, everyone!

Ashley Ringstaff

MSWorld Volunteer

www.msworld.org    

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November 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 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:
Terry Densford – Jacksonville, FL

 Terry Densford - Blue Blue

About the Artist:

I was diagnosed with MS on July 4th, 2011 – an easy date to remember…my MS affects my right side, from my face down to my toes, making it hard to speak, write, and other things we sometimes take for granted…

MS is something that hovers over my head. Will it get worse? If it does, how will it affect my life? When is the next time I will have another flare up? Where will I be? What will I be doing? Is my hand just asleep, or is it my MS? All normal questions I believe anyone who struggles with MS, unfortunately, asks themselves on a regular basis. All that being said, I consider myself lucky. I feel fortunate that I was diagnosed early; that there are medical advances out there that have helped me keep this disease under control. I push fear aside so I can continue to move forward. I intend to live my life as if there isn’t anything hindering its quality.”

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Be inspired – please send an online card featuring artwork by MS artist Terry Densford 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 2015 Art Showcase! If you haven’t already done so, submit your best artwork by December 18th 2014 for a chance to be a part of next year’s Art Showcase.  

Submit your artwork for the 2015 MSAA Art Showcase.

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