Joy in Hobbies

Posted on May 23, 2022 by MSAA

By Lauren Kovacs

Joy seems to morph. Be open to fluid change. The changes in MS will make you see the ebb and flow. Ride the wave. The current might bring you to a hobby you would never try.

Yah yah, flowery language aside. Embrace the change, people. Try to at least. MS is about trying. Try on many faces until it fits. It is kinda like jeans. You try on several pairs. If your butt looks good, buy them. If you can do it and like it, try it. But, remember to rest and don’t get hot.

Try a new hobby. If MS changes, try another. If it is not for you, try another. The list is endless. No tests or grades. Maybe try something outside the box.

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Special Swim for MS Swimmer Honored by the Military

Posted on September 12, 2016 by MSAA

Almost all of our Swim for MS participants have had some kind of personal connection to multiple sclerosis – whether a family member was diagnosed, a friend, or they themselves have MS. In this way, Team DragonFLY Captain, Courtney Evers, is no different. When her mother was diagnosed in 2005, Courtney and her family turned to MSAA for information about MS. After spending years on our website using MSAA resources and repeatedly seeing information about our Swim for MS program, Courtney decided to start her own. “It was something I could not only do for my Mom, but that she could be a part of, too,” says Courtney.

Courtney’s mother (left) swam the most distance of the team last year!

Courtney’s mother (left) swam the greatest distance of the team last year!

What does make Courtney Evers different from other Swim participants is that she was recently awarded the Military Outstanding Volunteer Service Medal for her volunteering efforts, including her years as the captain of her Swim for MS events. Since 2011, Courtney and her teams have raised more than $7,500 for the MS community by swimming in New York, Hawaii, and everywhere in between. When asked about receiving this special honor, Courtney said:

“The Swim for MS part of my MOVSM was by far the most meaningful, because it was something that really ‘hit home’. Not only was my team helping raise awareness, but the funds raised were actually going to those that needed it with MS.”

Please join MSAA in thanking Courtney for her service to her country and for her commitment to the MS Community and improving lives today!

To learn more about starting your own Swim for MS, please visit SwimforMS.org.

Mothering Through MS

Posted on May 6, 2016 by MSAA

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.

Meet New MSAA Guest Blogger Lauren

Posted on February 22, 2016 by MSAA

By: Lauren Kovacs

My name is Lauren Kovacs and I am 41. The stress of moving from California to rural Virginia poked the MS monster for the first time at age 16. My official diagnosis didn’t show up on stage until I was 21.

I was a pediatric patient with optic neuritis. This meant no learning to drive, no depth perception in gymnastic, and crashing into hall walls at school. I was not in a good place, but the MS monster had only stirred.

After nine months, my vision returned. Life went on. I went to college and made the university’s cheer team. MS was never the diagnosis at 16.

I worked part-time, took a full load of classes, and was a college athlete. The summer before my senior year, after a very tiring and hot week at cheer camp, I got sick. I rode home on the floor of the student-athlete van. I unknowingly had poked the monster again.

The next day, I went numb from the neck down. So began my quest for an answer. Some thought it was a virus and others thought I had been dropped in cheerleading camp and had a slip disc. I stumped all the athletic doctors for the university’s athletes. Cool. The best was a civilian doctor who told me I had a stroke and sent me back to campus with muscle relaxers.

I went back to my original neurologist. An MRI and other tests came back showing MS. The doctor told me not to research it. I was sent back to school. Confused, alone, angry, and tired was the casserole I was served. Newly diagnosed and alone, questions swam in my head and some chocolate in hand, as comfort.

I didn’t make it to nationals for UCA and I felt my teammates were more worried about re-doing the routine without me than my devastating diagnosis. Some even accused me of faking in order to skirt practice.

I kept going. I pushed on. I graduated, got a job, and married my sweet heart. I saw a new doctor who put me on Avonex. I had baby boy one. Four months later, I was hit with a horrible flare leaving me numb from the neck down again. After slithering around on the floor with a new baby, IV steroids were prescribed. Life went on. I did Appalachian clogging and was very active. I started figure skating instead to combat the heat.

Baby boy two arrived without any MS issues at all, except my fall down the stairs, which I can blame on MS. He was premature with health issue. A toddler and a sick infant meant stress. I finally changed doctors, after five years, because he refused to prescribe anything, but Avonex. He kept telling me I would get used to it.

The new doctor prescribed Copaxone, not long before we moved to North Carolina. I took Irish dance lessons, once we moved. The two boys were doing well. Heat, fatigue, and stress were manageable. The monster appeared to be contained.

Baby boy number three arrived and that began my slow decent. The monster was waking up. I was able to nurse for eight months. I was thrilled. IV steroids forced me to end that scene. However, they did their job and I changed doctors again. That is five neurological, if you are counting.

I had a new doctor who finally believed three healthy boys and me. Life was good, too smooth really. When my youngest was four, rocks were being thrown onto my path. The Betaseron was no longer working and I began sporting a cane. The monster was fully awake.

No worries, I can adapt, I thought. We took a Disney cruise with friends and when I had trouble walking onto the boat, I knew things were changing. I sat and waited for a cast-member to get a wheelchair. I held back tears, but the cast-member said I would enjoy my trip more. I did, but I felt crushed.

By the time my youngest was in first grade, I used a walker. I was also head cheerleading coach at their school. I was officially handicapped and life was getting tougher.

Here I sit, now. I only use a walker in the house. I crawl on my hands and knees, if I am not steady. I have the kids make dinner and there have been times I instruct from face down on the floor. But, I do it and I fight.

MS is a battle and you must never give in. Being realistic and humor go hand in hand with MS.

Nurturing Your Roots

Posted on March 20, 2015 by MSAA

By: Shannon Loftus

I have MS. While I am many things, a wife, a stay-at-home, work-at-home, home-schooling mom, it is that last word that reigns supreme over me. I am a mom. I am a mom who has MS. So, this month, I want to share with you how I made it over the hurdle of educating my son about my illness, and my personal thoughts on educating our children, particularly our little ones, when it comes to our MS.

I was diagnosed, finally, when my little guy was 3. I am of the opinion that my health issues are mine, and mine alone. I believe that there is no reason to burden my little guy with my dealings with MS (or the epilepsy, or the spinal stenosis). So, I had made the choice to not tell him until he was old enough to understand what it all meant. I never hid it, but I never went out of my way to chat with him about it. He is my son, not my “bestie.” He looks to me for leadership, and he does not want to be my sounding board. He wants the strength of a parent, not the venting-session of a buddy.

I had had this discussion with a member of our local support group, who always seemed to want to know when and if I had told my son. I always said no, not yet. He came to group with me, and still does, but pretty much spends his time in the venue’s play area. In 2012, at the age of 7, I attended a group meeting and was deep in discussion with another member. Out of the corner of my eye, I saw this person (the one interested in my telling of MS to my son), talking to my boy, and giving him a coloring book. I thought nothing of it. On the way home, he starts asking me; Mommy, are you going to die? What is MS? Why do you have it? Will I get it? I asked him why he was so upset (he was crying by this time). Then he shows me the coloring book. It is a coloring book/activity book/educational book, for children, put out by another organization, and while a fine product, well-written and engaging, I did not think it the right fit for my family, particularly given my son’s age, so I had foregone its use as an “educational tool” or “discussion starter.” I was mortified that another adult had taken it upon themselves to introduce my son to my illness, and in such an impersonal manner (yes, I addressed it with that person).

So, my cresting of the “discussion” hurdle, when it came to educating my son about my MS, was not some heroic event, but rather more of a giant face plant, courtesy of another person’s interference. My son, husband and I made it through what became a mud-run obstacle course of questions and answers, crying, full of hugs, and a little guy being scared his momma was gonna die. He is now just shy of 10, and he does not know all the details of MS. That will come with, according to his interest in learning about it, and ability to understand the science behind. Right now, he just knows mommy is ok; mommy is sick and some days her legs don’t work right, or her eyes hurt, or she is really tired and hurting, and she is definitely forgetful, and sometimes she needs her cane, or even her pirate eye patch. With that latter one, I can still get him to wear one, and it helps to take the edge off of his nerves and we laugh ourselves silly.

You see, I had read the children’s book before, and I knew it was inappropriate for my son, at that age, and what my husband and I were then forced to deal with went beyond MS education or simple family discussion. It became crisis management. Not the desired “teaching moment.” I find tools like that to be a one-size-fits-all approach, and let’s face it…how many times has the one-size ever fit you? It is always too big, too small, too short, too long, and never just right.

Children are like trees to me…they need strong roots to support them as they grow. So, teaching your child about your MS, really needs to be like watering that tree. It needs to be done with care. You don’t just turn a hose on a tree and walk away. You can drown it. Or your hose might be defective and your tree thirsts to death. Our children are the same. You can overwhelm them with too much information that they cannot adequately process in terms of their emotional maturity. You can underwhelm just as easily and then they may think you are keeping something from them (like the water for the thirsty tree).

I still sometimes stress out about my MS and discussing it with my boy. He still has questions. I stress out about not being the physically active mom that I dreamed of being. I look at other moms and dads playing hard with their kids in parks and I am not capable of that. I relayed to my husband once about how much it hurt that I couldn’t be a normal mom of a young boy. He looked at me, and he said, “But you are. You are his normal. You are what he knows, because you are all he has ever known as a mom.”

Those words were priceless. He was right. So, I now relay them to you. You are your children’s “normal.” Given that, you know what information your child needs, wants, and can handle about your MS. You may need to have a talk with them now, or you may not. The children’s book might be the perfect tool for you, or it might not.

Most importantly, don’t not talk to your children. Educate them, make them aware, but do it on your terms, and look to what your “normal” is. In this way, your leap over that hurdle will be magnificent and filled with a sigh of relief. It will not be an echo chamber of a collective gasp of horror. Trust me.

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

Posted on February 7, 2014 by John MSAA

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

“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.”

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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