June 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.

June Artist of the Month:
Elana K. Rosen – Cincinnati, OH
Lunchtime Dining
Elana K. Rosen - Lunchtime Dining

About the Artist:
“My name is Elana K. Rosen and I have always drawn and painted. I was diagnosed with MS in my thirties. Occasionally I have a hand tremor. When this happens my art is looser and I cannot paint detail. Painting makes me happy and helps me feel a sense of accomplishment.”
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Staying Social with MS

By Matt Cavallo

Many of you who follow this blog may have noticed that I haven’t posted here in a while. That is due in large part to a massive MS relapse I suffered in March and April. The relapse rendered me non-functional on my right side. I developed drop foot and could barely walk. My face drooped on the right side and I couldn’t squeeze my lips tight enough to drink without dribbling or even swish water while brushing my teeth. Most devastating is that my right arm and hand were completely numb. I couldn’t lift it or feel any sensation other than pins and needles. I also couldn’t pick anything up with my right hand and couldn’t grab a pen, keys or even type.

April and May were spent mostly in recovery, waiting for my functionality to return.  As a result, I wasn’t writing. Writing wasn’t the only thing I was avoiding. I didn’t want my friends to see me while I was in a relapse and recovery mode. I started isolating myself to anyone outside of my house. I missed events at school for my kids and major events like a good friend’s baby shower. (Actually, I briefly attended that one but quickly left due to embarrassment when I dropped a plate of food in the buffet line due to my numb hand). This also took a toll on social interactions at work. I travel quite extensively and all of a sudden I was asked to stay home instead. While it was for the better, it still changed the dynamics of those relationships.

Deep down I knew avoiding everyone wasn’t healthy, but I also didn’t want anyone to see me in my current state. I have spent so much of my life and professional career showing people how well I am managing my MS and to have this severe a relapse really was damaging to the way I felt about myself. While my wife was a rock, I could see that my condition was taking a toll on my two young boys, age 6 and 8. I couldn’t participate in their activities and they had to watch their dad go receive home infusions and struggle with mobility. All of a sudden, I found myself in the throes of depression. I knew I had to take action, but I didn’t know where to start.

The first thing I did was talk to my neurologist. Since I was having a major relapse, my neurologist was seeing me every two weeks to monitor my recovery. I disclosed to him some of the concerns I was having at home, at work and with friends and he suggested that I talk to a psychologist. While I thought it was a good idea, I decided to manage my depression on my own. This was a personal decision, if you are going through something similar, please reach out to someone who could help.

I decided to have a talk with my boss. He completely understood and supported me in my recovery. He appreciated that I was being open and honest with him. He reiterated that I was a valuable member of the team and that my health was the most important thing. He made changes to my schedule to accommodate my disability.

Next, I started having discussions with my friends. I reached out to some close friends to meet me for dinner. I explained everything I was going through and they were very sympathetic. Like my boss, they wanted me to know that they valued me as a person and that my MS was a part of who I was and that it didn’t change the way they thought about me at all.

Finally, I had a talk with my kids. I explained in the best way I could what was going on with my relapse and recovery. They hugged me and told me that despite what I was going through, that I was the best dad in the world. My wife has been my rock through this and I couldn’t have started my social outreach if it hadn’t been for her support and understanding.

Some of you may have a hard time staying social with MS. Maybe you are withdrawing from your family, friends and work, like I was. I just want to let you know that you are not alone. Being diagnosed with MS, losing functionality, dealing with devastating fatigue is a lot for a person to handle. To further complicate it, the people closest to you may not understand what you are going through. Everyone deals with MS in a different way. I just want to let you know that if you are feeling isolated or depressed, there are people out there that can help.

If you are feeling the same way, here are some tips that can help:

  • Talk to your neurologist, or other doctor, about how you are feeling.
  • Tell your friends, family and coworkers what you are experiencing. Even if they don’t completely understand they will want to be involved in your life.
  • Attend a support group meeting, MS webinar or social media MS group. There are opportunities to network with other people living with MS like you and sometimes it is nice to have a conversation with someone who understands.
  • Don’t overdo it. When I first decided to reengage socially, I pushed myself to the limit and wound up being really fatigued. If you set expectations and don’t overdo it, everyone will understand.

This last relapse was a tough one. It made me pull away from the people and the things that I love. I stayed isolated and depressed for a while. I decided to talk to my doctor, friends, coworkers and family about how I was feeling and together, we got through it. If you are having trouble with MS, staying social just might be the support you need.

*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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What You Wish They Knew About Your MS

Many people have heard the words “multiple sclerosis” before, and probably know it’s a chronic condition, but so many do not know what it really means to have MS. We asked our community at MultipleSclerosis.net “What’s one thing you wish more people understood about MS” and the responses were phenomenal. Below you’ll read real experiences from people just like you that start to paint a picture of what MS is really like. These are the things people should be aware of; this is how we spread true MS awareness!

I’m Not Drunk!

  • My memory is not always good! My husband and children understand and are patient, but people who don’t know look at you like you are drunk or high
  • She’s not drunk. She doesn’t even drink. It’s the MS that makes her off balance sometimes
  • I am not drunk, I am not dumb, I am not lazy – I have MS
  • Don’t tell me I seem drunk when I trip – It’s not funny

I Miss My Active Lifestyle, Too

  • If only others understood how we miss our active life before MS. It’s bad enough that we often feel like a burden, being treated as one is pretty much the worst feeling
  • Sometimes I feel depressed not being able to do what I used to be able to do – others just don’t get it
  • People always knew me as being active, and now they never see me. I just wish they would come by sometimes. All I need is to know someone out there cares

When I Say I’m Tired, I’m Tired

  • When I say that I have to go home early because I am tired, I am really tired. It´s not because I am lazy, it´s not because I am bored or boring, it’s because I am tired!!
  • When I say I’m tired, I’m not being lazy. And when I say my body hurts, Aspirin will not help
  • I wish they understood that my tired is not like their tired, and my pain is not like their pain
  • Just because I look healthy does not mean I am and when I say I am tired and need to sit down, it’s not a joke! 

Every Day, Every Minute, Is Different

  • I wish they understood that every moment is different. I can be good one minute and not the next
  • I wish people understood that my mind and body change every moment of every day
  • One minute I could be fine, but then next I’m not. I put on a brave face, but don’t assume I’m “fine”
  • Don’t ask me how I am if you don’t really want to know

How about you? Do you ever feel misunderstood? What do you wish more people understood about life with MS? Share this article and your own stories and experiences to spread the word about what it really means to live with multiple sclerosis!

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Emotional Wellness

Taking care of your emotional health is as important as taking care of your physical health.  Really, they go hand in hand.  Eating and sleeping well and exercising regularly can help you feel better about yourself.  Conversely, if you are in a good mood, you are more likely to make good decisions related to your physical health.  For example, when you feel good, you’ll look forward to exercise and not view it as a chore.

When I think about emotional wellness, several words come to mind:

Happiness – Are you making choices and doing things that bring you joy?  Life is too short to waste it on things (and even people) that bring you down.

Acceptance – When things don’t go your way or you have a personal setback, you shouldn’t be so hard on yourself.  Take a step back, learn from your mistake and then make a plan to move forward.

Optimism – It’s emotionally draining if you always think the worst will happen.  It can cause serious mental and physical health problems.  So, try being more optimistic; focusing on the positives rather than the negatives in people and situations.

Resiliency – Life is full of setbacks.  What defines us is how we respond to them.  As the band Chumbawamba sang in their 1997 hit Tubthumping, “I get knocked down, but I get up again. You are never gonna keep me down”.  These are simple words to live by.

Positivity – Much like optimism and happiness, it’s important to have a positive outlook on life.  It is so much easier to attack challenges in life with vigor rather than dread.

According to the Mayo Clinic, positive thinking is linked to a wide range of health benefits including:

  • Longer life span
  • Less stress
  • Lower rates of depression
  • Increase resistance to the common cold
  • Better stress management and coping skills
  • Lower risk of cardiovascular disease-related death
  • Increase physical well-being
  • Better psychological health

This doesn’t mean that everything in your life will always be positive.  It’s normal to have a variety of emotions.  However, working to replace unhealthy thought patterns with positive ones will help prevent you from getting stuck in negativity.  Give it a try and see what happens.  I’m positive you’ll think it’s a better way to live!

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Mothering Through MS

By: Meagan Freeman

How will my children remember me?

Isn’t that a question every parent asks? We want to set the best example for our kids, leaving a legacy behind when we are gone. Often, this is one of the main reasons people choose to become parents in the first place. One of the first fears in the minds of parents who are diagnosed with MS is: “How will this disease affect my ability to parent?” Followed soon by, “Will my young children remember me when I was healthy?” MS often strikes in the prime of adulthood, when most people are finally successful in a career, finally married, or starting new families. This is the cruelest aspect of this illness, the theft of young optimism. We want our children to recall these years of health, vitality, energy and strength. We want them to remember vacations, playing ball, swimming, and dancing with us. We want them to remember us as young, beautiful adults who never failed them; however, illness interferes with that image, and creates an image of inability and dependence.

Mothers with MS face an incredible challenge, coping with an incurable illness while tending to the needs of little ones, putting the needs of others before their own. In my own family, I witnessed the strength and perseverance of two mothers, facing incredible odds, refusing to give up no matter how difficult life got. MS was no match for these incredible women I am referring to, my grandmother Bette, and her daughter Susan, who happens to be my own mother. My grandmother was diagnosed with MS in the 1950s, and she had 7 children at the time. As a child of 5 or 6, I have vivid memories of visiting the home of my grandparents. We spent many holidays there, the home where my mother and her 6 siblings grew up. My grandfather Stan was the breadwinner, and my grandmother Bette struggled while trying to raise her children. She had been diagnosed with multiple sclerosis in the 1950s, when there were no treatments available. She was basically told to “get in bed and stay there.” Faith, love, and hope were the keys to their success, and my grandparents were a living example of heroism and true love despite devastating life circumstances.

When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them. When I question whether truly unconditional love exists, all I need to do is recall this life story and look at their pictures. Despite MS, my grandmother dedicated her life to her children, instilling love and values that remain to this day. You see, what matters at the end is our life story, our legacy; the story that will be told to future generations. Each of us is slowly writing a story that will be told someday, and it is incredibly important that we write one that we will feel proud of.

My mother was the oldest child in her family. Due to her mother’s progressive MS, at age 12, she took over a majority of the household chores and duties, becoming a surrogate mother for the 6 younger siblings in the home. My mother needed to grow up quickly, and assume the role of a parent at a very young age. At the time, there was simply no choice. Rather than playing, my mom would cook, clean, and help younger children bathe. She sacrificed her own needs for those of her family, and she never failed in her duty. The defining characteristic of a mother is the resolve to care for her children and protect them from harm, no matter what. My mother continued to care for others when I was born, and she was the most wonderful mother anyone could have asked for; I truly don’t know how I got so lucky! She provided me with a beautiful childhood, and gave me all any child could ever need, always putting my needs before her own.

My mother set a wonderful example for me, and I try to carry that on each day. I struggle with MS daily, but despite those struggles, I can still enjoy my children. I see their innocence, their desire to see the world as a beautiful place. My goal is to continue to allow them to see things as awe-inspiring, breathtaking and amazing for as many years as possible. I try to share openly and honestly with them, letting them see certain aspects of my disease, but shielding them from others. I am fortunate to have witnessed two incredible examples of motherhood in my own family, and I think of these incredible women every day. Each mother with MS is going above and beyond, coping with physical challenges while sacrificing daily for her children. Thank you to every one of the MS moms in the world; each of you is a true hero. Thank you, Grandma Bette, and I love you, Mom! Happy Mother’s Day to all…..

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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MS Mood Swings

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You can only blame lack of sleep for so much before you start asking “Why is my mood so inconsistent!”  Turns out, it’s not just fatigue – it’s actually a common symptom of MS! As with many invisible symptoms that can occur with MS, mood swings can have a profound effect on relationships and emotional health as a whole.

Our phenomenal contributor, Devin, described this frustrating symptom perfectly in his recent article “Invisible Symptoms of MS: Mood Swings” and the community rallied behind him sharing their own stories and support.

It became clear that this is not uncommon, and while difficult to manage, having the support of other people with MS can make all the difference. Here are just some of the comments our community members shared:

Sometimes, even I can’t figure out why I’m upset

  • I never thought my mood swings could be MS- related. Sometimes I can’t explain to myself why I’m reacting as I am.
  • Since my diagnosis, I cry at every chick flick and even the Budweiser Clydesdale commercials! I can’t seem to get my emotions together sometimes
  • There are times I know I’m picking a fight with my husband about something stupid, but I don’t even know why I’m upset!

I just thought I was crazy!

  • I always thought it was just who I am. An emotional roller coaster with frequent break downs.
  • The problem is most people don’t know about this symptom, so I get more depressed because I feel like people think I’m losing your mind.
  • I always know when my meds aren’t working because I start to feel like I’m going crazy – then I have a lot of people to apologize to
  • I just thought I had gone crazy: I didn’t think it could be a MS symptom. It puts my mind at ease to know I’m not alone.
  • I thought I was just a raving lunatic!

Knowing why is one thing; managing these swings is another!

  • It feels normal in the moment; not until after that I look back and realize just how moody I was being. I know it’s the MS, but I don’t know how to control it
  • I definitely get moody, but what can you do? I just live with it and try to stay strong! Laughter is key.
  • I can feel it coming on – as soon as I start to feel practically homicidal I isolate myself in my room and wait it out.
  • Knowing my MS was the cause of my mood swings was a relief, but finding ways to conquer them is the next challenge.

How about you? Have mood swings impacted your life? Have you found any good approaches for managing these? Feel free to share with the community – you are not alone!

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Meet MSAA’s Newest Guest Blogger – Lisa Scroggins

I am Lisa Scroggins, wife, mother, CPA. I was diagnosed in 1991, and my mother had MS. There’s more: two of my five siblings also have MS. So, obviously, I am a person with MS: a patient. I don’t like to be called an MSer. I also resist substituting different words for the letters, M and S, such as “Made Strong:” I like to think of myself as an advocate, and I have written to members of Congress on various issues. I’m currently in the process of trying to correct an inadequate parking situation in my community¹.

If I’m brutally honest with myself, I just don’t like being a disabled person, and I have hope that I can improve. Having officially stopped working because of disability, I am having an identity crisis, as well as an existential one. I know I have pretty severe limitations, which mostly have arisen in the past three to four years. There’s my first clue: it seems as though it’s very recent, but I just typed the truth: my walking ability has worsened over several years, not the one or two that I’ve been telling myself. It has been only a couple of years since I’ve worked, but it’s important to know that I experienced a life-changing series of events which have left me reeling to this day. In other words, it’s complicated.

I’ve had MS for a very long time. I’m lucky, in that for many years, my symptoms were invisible to others. Although they were always in the back of my mind, I had learned to compensate for them.

First example: I’m shopping in a Sam’s Club store. It’s a huge building, and as is typical, I’ve walked around for a while, just browsing for things that I might want to buy, when I realize that fatigue² is kicking in. I’m not prepared to check out, with all that entails: getting my payment and membership cards out, unloading my items to the conveyor belt, putting them back in my cart, storing my cards safely, but keeping my receipt ready to be checked before exiting, trekking to my car, unloading my purchases into my trunk, parking or maybe just abandoning my cart, climbing back into my car where I will rest for a few minutes, while hoping that no one is idling behind me, waiting for my parking spot—oh the pressure! Also, I’m a pretty good distance from the checkout lines, and those lines were fairly long at last glimpse. What to do? I head over to the book section. I park my cart so that hopefully, it won’t impede any other shoppers, grab a few books to peruse, and sit down on the floor to rest and look through the books. Occasionally, I get some questioning looks, but hey, you do what you have to do.

Second example: I have what’s known as a “neurogenic bladder.” Real world translation: I experience urgency, which means I have to pee now! It doesn’t matter when I’ve last relieved myself, or how much my fluid intake has been. (That commercial for an overactive bladder medication is spot-on and even cute! The bladder IS in charge and drags me where it will.) Whenever I enter a building, if I don’t already know where the bathrooms are, I focus on finding their locations. When driving, I have been known to pull over to the side of the Interstate when I couldn’t make it to the nearest restroom. The technique involves putting on my car’s flashers, exiting my car, rapidly walking over to the passenger side, opening both front and rear passenger doors to provide a modicum of privacy, grabbing a fast food napkin or two from the map storage compartment door on the front passenger side for, oh, come on, you know what it’s for (always kept stocked for emergencies such as these!), and doing the squat. There’s just no way to do this in a dignified manner. I always feel guilty for littering. The pre-MS me would never have done such a thing.

The nature of my MS has changed and its effect on me has been nothing short of dramatic. As isolating and terrifying as it is, I know there are thousands of other people going through the same thing. The need to redefine myself in this new state of existence, is a powerful one. In our culture, what we “do” defines us. I’ve been treading water for some time, trying to figure what it is that I “do” now. If it’s true that “necessity is the mother of invention,” I’m looking for some tools. Maybe we can search together.

¹ You may have thought, as I did, that the ADA fixed this stuff, but that is incorrect! An explanation in a future blog post is in the making
² Often cited as the most common and disabling symptom among people with MS.

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Keeping That MS Monster Asleep

By: Lauren Kovac

Ah, spring is in the air. It means pollen-covered cars, sneezing, and nesting. Getting organized for the coming season is something we all want to do. Organization can help MS people feel a small sense of control.

I was extremely organized, before the MS changed that. It messed up my neatness. Actually, it was more like a tornado barreling through my nice organized piles.

I have learned to turn a blind eye, take a deep breath, and have some chocolate. However, some things cannot be left. With MS, you constantly have to learn to find alternative ways to keep the MS monster sleeping.

With three boys and constantly using my clothes for target practice, a laundry mountain cast a dark shadow on my life. Getting the basket from my bedroom to the laundry room was an obstacle course. My solution is now to push it with my walker on a plant stand with wheels.

Spring means soccer too. Games are fast, so outings are short. I get some much-needed vitamin D and adult interaction. Enjoy outside while you can. Take advantage of nice weather, before the heat comes. It is nice to enjoy the fresh air without being a bug buffet.

Interaction face to face is nice too. I love our dog, but he can’t talk back. He is not a conversationalist. He only has one sound and it sounds like barking. He will whine occasionally, if you are eating cheese. His conversations are rather one sided.

I relish my weekly therapeutic horseback riding lessons. The quiet of the farm, the green pastures, flowering trees, and even the horse poop means freedom. Swirling whirlpools of shed horsehair in the breeze means I can enjoy outside.

Once it gets hot, I embrace my inner hermit. Until then, I soak in the lovely weather, take an allergy pill, and get some rays. I like being a toasted mushroom instead of a pasty one. Sun, interaction, horses, and watching my son’s soccer games are great ways for me to keep that MS monster sleeping.

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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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March is almost over…But before we go

This month we’ve been highlighting MS Awareness as we present different topics important to and associated with MS as well as ways in which we can educate ourselves and those around us. In addition to MS Awareness, March is also Social Work Month. Social workers play a vital role in overall health and wellness, mental health, as well as in areas far outside of the health sciences.

Social-Work-Month-2016-Home-Page-Slideshow-

Social workers have been around since before the 1800’s working diligently on issues of injustice, inequality and to help empower individuals and communities to use their collective strength to make a difference. Some of our most noted alums here in the United States started institutions such as the Hull House in Chicago in 1889, which was established to help the surrounding low-income neighborhoods have access to education programs, health care services and recreational opportunities. In addition to reaching out to low-income communities, social workers throughout history have partnered with the Red Cross to treat soldiers returning from war, been civil rights activists, served on presidential cabinets and worked in legislative arenas as catalysts for change. Social workers are often thought of as the caseworkers in hospitals or with children and family services. While those are two of the important roles that social workers take on, social workers also work with the military or international businesses as well as be political campaign workers, community organizers, run nonprofit organizations and are behavior and mental health professionals. Our first lady Michelle Obama has an MSW (Master of Social Work) on her team to initiate new programs and services across the country.

Social work as a profession has evolved from those early years but some things still remain. The individuals who enter into social work are dedicated, compassionate, innovative, inclusive and hard working professionals who cover a bevy of occupations and can be found in almost every avenue. We meet people on some of their worst days and walk with them through circumstances and over obstacles while assisting them to build on their own strengths to come out the other side better equipped to tackle some of life’s uncertainty. It takes a special person to be a social worker and partner with others to be the difference someone may need.

Social-Worker-Board-Exam-Results-June-2014-Quotes

Thank any social workers you know for all their hard work not just in the month of March but whenever you get the chance.

 

 

 

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