About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Splash for Multiple Sclerosis on Memorial Day

This Memorial Day, MSAA invites you to join our team and help us make the BIGGEST splash yet! Whether you’re a swim enthusiast or just enjoy the water, there are numerous ways you can participate and be a part of MSAA’s Splash for MS Memorial Day Team.

Here’s how YOU can participate:

  1. Register on MSAA’s Splash for MS Memorial Day Team today and get your Swim for MS swag to show off while you’re having fun in the sun.
  2. Make a donation to the event! Click here to make a donation toward our goal.
  3. Already registered to Swim for MS? Email us at swim@mymsaa.org and we’ll add you to MSAA’s Splash for MS Memorial Day Team.
  4. Tweet, Instagram, or Post a picture of you and your friends and family making a splash on Memorial Day! We will be posting pictures of team members showing their support for the MS community all across the country so don’t forget to check out MSAA on all your favorite social media platforms! #SwimForMS #MemorialDaySplash
  5. Don’t have a pool? No problem! Get in on the fun at your nearest beach, river, or even your backyard Slip ‘N Slide! Take a dive, swim laps, dip your toes in the water, or just float your way through Memorial Day.
  6. Any Pool, Any Time, Any Way you Swim for MS helps Improve Lives Today!
  7. The first 10 people to register by May 15th will receive a very cool Swim for MS carry-all cooler chair!

The great thing about this event is that you can choose how you’d like to participate – swim laps, makes some waves in the ocean, or run through the sprinklers with the kids! Click here to register today!

 

Don’t forget that Swim for MS is a year-round fundraiser. Even if you can’t participate this month, any time is the right time to dive into action to show your support for the MS community. Any pool, any time – the choice is yours!

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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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Highlights from MSAA’s Improving Lives Benefit in Washington, DC

On April 22nd, MSAA held the second annual Improving Lives Benefit at The Pavilion at the Ronald Reagan Building in Washington, DC. It was a wonderful evening filled with good food and fun – all in support of a great cause! The funds raised from the event directly support MSAA’s free, vital programs and services.

Honorees - Doug - Sue

(Pictured from left: MSAA President & CEO Doug Franklin, Honoree Kristen Adams, MSAA Board Chair Sue Rehmus, and Honoree Dr. Randall Schapiro)

This year, two special people were honored as MSAA champions for their accomplishments, commitment, and support of the MS community.

Dr. Randall Schapiro, MS neurologist and member of MSAA’s Healthcare Advisory Council, was honored for his dedication and contributions to the MS community. Among his many notable accomplishments, Dr. Schapiro founded the first comprehensive MS center in 1977, participated in numerous research studies, and helped to develop two MS organizations. Through his years of service, he has come to recognize the importance and impact a “team approach” can have in helping the MS community.

“That’s the way we’re going to make progress. That’s the way we have success in dealing with a difficult disease. So I’m appreciative, very appreciative, of accepting this award on behalf of my team; all of the team; all of the people that have been involved with me and helped me.”

–Dr. Randall Schapiro

Also honored was Emmy award-winning network producer and writer, Kristen Adams. Diagnosed with MS in 2008, Kristen serves as an inspiration to all who hear her story. In early 2014, Kristen played a major role in helping to launch MSAA’s Why I Swim initiative by producing and starring in nationally broadcast videos to inspire others to share their stories.

“I can be a good example. And I know now why that is important and why I continue to do that. And I am deeply grateful to MSAA for allowing me the opportunity to do that. Thank you.”

–Kristen Adams

This year’s Improving Lives Benefit would not have been a success without the support and generosity of our donors. With the help of our supporters, MSAA was able to raise more than $115,000 – which will make a tremendous difference in helping to provide vital programs for so many people affected by MS.

Thank you!

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Latest Issue of The Motivator Now Available

The Winter/Spring 2015 issue of The Motivator is now available! Request your copy today or read it online with the all new digital edition! You can access the digital edition right from your desktop or mobile device and enjoy enhanced interactivity and special features such as tools to search for specific terms, change the font size, and add your own notes.

Motivator digital

Read about the following topics in MSAA’s latest issue of The Motivator:

Motivator Winter Spring 2015

Cover Story:

Cognitive Issues with MS: Research, Strategies, and Support

…A common symptom of MS, cognitive issues may impact many areas of one’s life, including employment, relationships, adherence to medications, and other activities of daily living. This article details current research into cognition and multiple sclerosis, while providing strategies and support for reducing the effects of this often-challenging symptom.

Read the full story

Stories to Inspire:

…Following a severe relapse, Tina was left with loss of vision in one eye, dizziness, and balance problems. She had no idea that seeing-eye dogs are also trained to help mobility and balance. With her service dog by her side, Tina is ready to conquer the world!

Read the full story

Program Notes:

…Updates on MSAA’s programs are featured, including the MRI Access Fund, details on how to request cooling accessories to relieve heat sensitivity, and more.

Read the full story

Read the latest issue of The Motivator – and be sure to check out the features in the NEW digital edition!

 

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Getting My Act Together: Staying Organized Despite MS

By: Jeri Burtchell

It’s easy to let fatigue be my catch-all excuse for why things are in disarray around here, but if you’ve known me for more than 16 years I’m not fooling you. Actually, I prefer my mother’s excuse for why I’m not very organized…

“You’re an artist, Jeri, and artists tend to be messy because their minds are busy creating.”

Sometimes, though, it seems my messy ways have only created more headaches and hurdles for myself — something I seem to have less patience for as time goes by.

I’ve decided to try a new tactic, though. It’s called “be kind to yourself.” So now, when I see self-made obstacles to stress-free living, I try to take off my blinders and correct one small thing at a time, making my living space – and my life – more “Jeri-centric”.

Case in point: Every time I need a pen I head for the three side-by-side pen cups on my desk. They are overflowing with pens I’ve collected on trips out of town and harvested from the copper-rich soil of pennies at the bottom of my purse, where together they perpetually weigh down my every move.

In what has become an exasperating ritual, I select a pen, begin to write, only to run out of ink three strokes into my thought. Frustrated, I put the pen back in the cup and select another. I’m often doomed to repeat this process four or five times before chancing upon a pen that can outlast my need for ink.

When my brother recently visited, he noticed this ritual, and asked me why I didn’t just toss the ones that don’t work. Such a simple, logical question and yet it had never occurred to me. Most likely because tossing the pen meant being near the trash can and required additional physical exertion. Yet in the grand scheme of things he was right.

Immediately I took all three cups to the kitchen counter where, one by one I assessed their capabilities by scribbling on a notepad. If it didn’t produce, it faced instant death by trash. In the end I had one pen cup full of pens that write, and had freed up two coffee cups.

I felt so good about that accomplishment, (and the way I am rewarded with ink every time I grab a pen to jot a note), that I’ve decided to see where I can make other small adjustments to be kind to myself. Here are a couple other ideas that I came up with. They might seem like “no-brainers” to a more organized person, but to me they were epiphanies that keep on giving, making me appreciate each day how thoughtful I was to make these small adjustments in my recent past.

● I went through all my spiral notebooks I keep around for work and ripped every page out that had anything written on it. Then I created project file folders, sorted all the notes for each project, and filed them. Now I no longer spend half an hour leafing through notebooks frantically trying to find minutes of a certain conversation.

● I went through a couple of piles of “chronologically filed” papers I’ve been meaning to go through and made three stacks: 1) Important/Save, 2) Needs Action and 3) No Longer Relevant/Trash. Things like the deed to the house and my passport went in the first stack, bills to pay went into stack two, and expired coupons, magazine subscription offers, or grocery lists from a month ago went into stack 3 (a.k.a. the trash can).

It’s amazing how easy it is to stay up on paying the bills now that I know where they are! And when it was time to take my son to get his Learner’s Permit at the DMV, I knew without a doubt where I could find all the necessary proof of ID for both of us.

My new hurdle is maintaining this level of order. But I’ve discovered that if I spend a little time at the end of the day making sure my work area is organized and the papers are filed it’s amazing how easy being kind to yourself can be.

Herding all the pens back into the cup corral at night and leaving myself a to-do list for the next day makes waking up the next morning a whole lot easier. It’s like I’m finally working with myself instead of plotting my own destruction.

So be kind to yourself and spend just a little time organizing a bill-paying station or home workspace with all of the things you might need. Cutting back on clutter-induced stress can have lasting benefits. Now if the bills would just pay themselves I’d be all set!

*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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MSAA’s MS Research Update Now Available

Research_Update_2015_email_BUTTON1The 2015 edition of MSAA’s MS Research Update provides a comprehensive overview of research findings on FDA-approved disease-modifying therapies, as well as study results on many experimental treatments currently under investigation. This update also presents directions for future research in areas such as stem-cell research, biomarkers, genetic studies, and more.

In addition to the exciting research aimed at relapsing forms of MS, several studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, trials with progressive forms of MS have been highlighted in bold for quick identification.

Read MSAA’s latest MS Research Update here.

 

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Worth Fighting For

By: Matt Cavallo

There was a touching moment at my last neurology appointment. You see, I have been with my same neurologist since moving to Arizona in 2009. Throughout the years, he has been by my side through good and bad times. This time was different. He seemed less like my neurologist and more like he was proud of me.

In 2010, I was suffering from severe spinal stenosis due to a bone fragment that had chipped from my C6 vertebra. I required emergency neck surgery or faced the risk of being quadriplegic. After surgery, I fell into a state of depression. Relapse after MS relapse building to a surgical climax, I just felt like my quality of life was never going to be what it was before having MS.

I was ready to give up on myself. Not only that, but I was ready to give up on my MS treatment, as well. And I did. I was required to stop my treatment prior to surgery. Post-surgery, I didn’t want to restart my treatment. I had had enough. I was sick of feeling like a science experiment or a pin cushion. It seemed like even though I was on a treatment that another debilitating relapse could strike at any moment.

One month passed post-surgery and I was feeling OK. A little tired, but OK. Then a second month passed with no treatment. Now, unbeknownst to me, I started to forget simple tasks around the home and office. A third month passed and I was dragging my left leg, had blurry vision in my right eye and couldn’t follow simple instructions. However, due to the brain fog I was in, I convinced myself that nothing was wrong.

That’s when my neurologist stepped in. I didn’t tell him anything, but you see I worked for a neuroscience clinic that was associated with his practice. One of the nurses called him and he made a special trip down to the neuroscience clinic to check on me at work one day. As a result of his visit, I found myself in an MRI followed by the news that my brain and spine were blossoming with active lesions. He ordered me a round of solu-medrol and a follow up with him the next week.

During that follow up, he wanted to know why I was acting the way I was. Why was I going against medical advice? I told him I was done fighting and that I had already been through too much. He spent the rest of the appointment helping me decide that I was worth fighting for. That my multiple sclerosis would have periods of relapse followed by periods of remission and that I needed to use the available tools to fight it with all I could. And I did.

Good Times: Last week, I walked into his office feeling like Norm on Cheers. I got to visit with old coworkers and acquaintances and catch up with old friends. Then, it was time for the appointment and this appointment felt a little different. He did his protocol tests and talked to me about lab results from a recent blood draw. Then he took the conversation in a different direction.

“Matt,” he said, “How are your travels? I worry some time that your life on the road is going to wear you down.”

“You know me,” I responded. “I want to use my story to go make a difference in the world.”

“When I think back to when I first saw you, to where you have come, despite the challenges.” He paused. “I’m just…I’m proud of you.”

Given where we have been and reflecting back on the past five years together, the good and the bad, I was speechless. This is a revered neurologist, that has been practicing MS in Phoenix since 1978 and he is proud of me.

At first, I was speechless then I responded, “Remember when you told me I was worth fighting for? Well, I believed you.”

I believe that all of you who are reading this are also worth fighting for. The question is, do you believe it too?

*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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Greetings from the Midwest Region!

By: Marie LeGrand

Greetings from the Midwest Region! I am the newest member of the team and as the Regional Director have had the pleasure of meeting so many wonderful people and formed great relationships during the last few months.

As a healthcare leader, my journey has taken me to unexpected places and provided me the opportunity to enhance client and patient satisfaction; by creating and implementing services that promote healthy behaviors, and designing plans around health program expansion and extension. Before joining MSAA, I developed disease prevention programs and monitored the effects within community settings. I worked collaboratively with other nonprofit organizations; in increasing HIV awareness and prevention within underserved communities and high-risk groups in the city of Chicago. Through program development, health promotion, partnership building, and research & development, I created culturally sensitive and educational materials on key health issues.

As the Midwest Regional Director, I will work with MSAA in creating awareness and providing education, programs and services to individuals living with MS and their families. I have had the privilege of speaking and listening to the touching stories of individuals, who have started support groups and fundraising events that encourage others to stay positive and involved while finding ways in which to overcome the challenges of MS. Through them, I am empowered and excited every time I am asked about my profession and the work that MSAA does nationwide for the MS community. I am also pleased when my guests come up to me at the end of a program and proclaim how happy they are with the quality of work that we consistently do for them and their families. For many, it is an opportunity to meet new friends and create connections that will last a lifetime. For others, it is a time to laugh and share stories of encouragement and perseverance as well as giving tips on how to live life fabulously with MS!

In the next few months, I plan to reach out to those living in rural communities and small towns working with expert clinicians and health practitioners in the field to answer questions that many have pertaining to their health. Oftentimes, it is a very scary experience to speak with clinical staff or a physician. The programs are an open forum for many to address issues that are left unanswered in a friendly and inviting environment allowing them to discuss pertinent topics that affect daily living. I have a few educational programs that I am excited about, which covers a variety of topics such as, “The African American MS Patient Experience”, “Multiple Sclerosis in Women”, and “Adherence Matters”. I hope through these programs, many will become more knowledgeable about their MS.

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Managing Cognitive Difficulties

By: Meagan Freeman

When we think of spring, we think of renewal, spring-cleaning, organization and clarity. We think of new growth, birth, refreshment and a new beginning. This can be especially difficult for patients struggling with memory loss and multiple sclerosis. How do we achieve organization when we have a difficult time recalling why we walked into a room?

How many times have you misplaced your keys? Lost your phone? Forgotten someone’s name?

Cognitive difficulties brought on by MS are an incredibly tough thing to accept, especially in the very young. We aren’t supposed to experience memory loss like this in our 40s, 30s and even 20s. When that familiar face says “hello,” on the street one day, you know you recognize this person…but you think: “what was that name again?” Embarrassing to say the least.

Like any MS symptom, these changes are caused by lesions and brain atrophy over time. Medications used to treat MS symptoms may also be responsible for causing cognitive issues. Pain medications, anxiety medications, and muscle relaxants may cause patients to become sleepy, fatigued, and even confused. We should all be cautious when using these types of medications, especially when driving or doing other dangerous activities.

What can be done about these issues?

Occupational therapists, speech and language pathologists, and neuropsychiatrists can perform a specific battery of tests to determine the severity of the cognitive impairments. Then, computer-assisted tools such as memory aids, and other forms of cognitive rehab can be used to improve memory and learning. The other key point is that lesion load, or the number of lesions seen on MRI, can correlate with cognitive problems. Therefore, it is natural to assume that staying on a disease-modifying drug is important in keeping the lesion load low.

In my own life, I have experienced a great deal of cognitive decline over the last few years, and I am only 40! I began to notice that I was forgetting the reason I entered a room, where I put important things in my home, where I set my keys, and even names. I was horrified when I noticed these changes! Some of these things can be blamed on normal aging, stress (6 kids!), and perhaps lack of sleep/rest. However, I am quite sure that MS has a lot to do with it. All we can do as patients is educate ourselves, educate our families, and be aware. Communication with our providers is important as well, and we need to be sure that we are receiving every available treatment. Don’t ever assume that nothing can be done for you. Training your brain by reading, writing, and continuing to learn are excellent ways to keep the mind working! “Use it, or lose it,” as they say!

Use your spring-cleaning time to organize your life. Keep things in specific places that you will remember clearly. Label things, and use a pill sorter to remind you to take your medications, if needed. Write everything down, and set reminders in your phone. If we prepare for those moments of memory loss, we will find them less worrisome. Happy Spring!

*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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Nurturing Your Roots

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.

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