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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Making Friends and Finding Support

Making friends as an adult can be a challenge. Often the friends we have as adults are those we have grown up with, either through grade school or college. Sometimes those friendships change and we find ourselves looking for new friends, or friends that share a common interest, skill, or lifestyle.

Individuals diagnosed with MS may be looking to make connections with others that are diagnosed, but have a hard time meeting people face to face. There are several opportunities available to promote friendships and support to those diagnosed and their family members.

Social media can be a great way to get connected, just be comfortable knowing that your diagnosis or personal information can be shared online. Facebook groups allow individuals throughout the world to connect and share information; search in Facebook ‘multiple sclerosis’ and find a number of private or public groups. Online message boards such as MS Connection or MS World can also be an effective way to find individuals who are interested in a certain topic.

If online communication is not your thing, MS Friends, a program organized by the National MS Society connects individuals with MS through a telephone service. You can contact 1-866-673-7436 and speak to an individual with MS. MSAA also offers a Networking program, which can connect individuals through letters or e-mails.

With so many options to get connected, how do you stay in contact with others?

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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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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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May 2015 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2015 Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our MS Art Showcase online gallery to view all of the new submissions.

May Artist of the Month:
Lisa Wright – Austin, TX

 Lisa Wright - Mum and Dad

About the Artist:
“MS can be a challenge. It saps your energy, dulls your wits and creativity. Sometimes it feels like an effort to pick up a brush or pencil. I was diagnosed in 2002 after a bout of optic neuritis that left me temporarily blind in one eye. It was enough to leave me wondering about what this meant for my future, and not just as an artist, but everything.

Fortunately, my MS had been discovered early. They put me on a therapy immediately and my flare-ups have been minimal. I am grateful to my doctors for their guidance, to my family and friends for their love and support, and to my husband – also my caregiver – for his patience. He keeps me focused if things become difficult.

And thanks to you, MSAA, for all the thorough information you provide. I’m part of the MS community, along with a lot of creative people just like me!”
Read more

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

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Hi! It’s nice to meet you. What do you do?

Such a direct question, right out of the gate! And it’s one we encounter often when meeting new people – report your name and occupation for informational purposes, please. Because of the nature of this interaction (which feels very unnatural at times), meeting new people can be intimidating. It can be an awkward situation with pressure to ask or answer certain questions that may be sensitive to you or the other person. It can also be stressful to open yourself up to new people because the outcomes can be uncertain. How will the other person interpret what you said? Will they be accepting of you? And the detailed request to explain what you do rather than who you are can feel uncomfortable too, especially for those who may not currently be in the workforce to identify themselves as their work first.

Ok, so new conversations don’t exactly occur like this: “Hi, I’m John. I like traveling, going to the opera, and fishing.” But they don’t necessarily have to evolve into interactions that make you feel like you’re filling out paperwork at the DMV either. There can be a balance, where you can actually learn about the person’s character and their likes before judging them solely by what they do or don’t do for a living. It may not feel like it, but perhaps those who are no longer working are at an advantage at times in this new meeting scenario. This leaves the discussion open to actually discussing matters that are not just work related!

Other topics of conversation can be brought into the encounter and people can learn who the other person is and not just what they do. Maybe this conversation flow can include “tell me something about yourself,” thus creating a whole new direction of discussion between new people.

Even though meeting people can be scary sometimes, it can also open up so many exciting doors for increased interactions and forming relationships with others, which can be of great value!

How do you meet new people?

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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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The first “Ask Me Anything” on MultipleSclerosis.net!

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You may have heard of one of the latest trends in social media discussion forums, called “Ask Me Anything”, or “AMA”, popularized by websites like Reddit. An AMA is a common chat topic or general discussion forum thread in which people ask someone who is an expert in a certain area questions relating to his or her life or expertise. Last month, MultipleSclerosis.net hosted our first AMA event on our Facebook page, and it was amazing! The event was hosted by our team of moderators in honor of MS Awareness month, with the goal of providing a set time where members of our community could ask our team anything about MS symptoms (our chosen theme for this particular event). The results were tremendous! Our first AMA prompted over 240 posts in just one hour – including questions, comments, and replies – which averages out to about 4 posts per minute!

Though the main theme of the AMA was MS Symptoms, a wide variety of topics were discussed, including rights at work, discontent treating physicians, how to provide support to relatives and loved ones who have MS, how to manage fatigue, what it means to have secondary progressive MS, and what to do upon first receiving an MS diagnosis.

Our moderators and team answered the community’s questions based on personal experience as well as the wealth of articles on MultipleSclerosis.net. Here is a brief summary of some of the topics that were discussed!

I’m unhappy with the treatment I’m receiving from my current neurologist. One place to start is by taking a look at a registry of MS experts here. The National Multiple Sclerosis Society may also be able to provide recommendations for practitioners in your area. Additionally, attending patient meetings can be very helpful for coping with many aspects of having MS, and they also serve as a great source of information like names of good doctors.

What can I do to manage my MS fatigue? Believe it or not, exercise actually helps some people with MS manage their fatigue. – It stimulates certain chemicals in the brain to make us feel better. Working full time while taking care of one’s family is exhausting for MSers. Another idea would be to try meditation or yoga for its calming and healing effects.

What are my rights at work with regard to disclosing my condition, and receiving the support that I need? The ADA requires an employer to provide assistive equipment/aids so someone who is disabled can continue doing his or her work. It also prohibits the employer from firing someone for being disabled, but does not protect you from termination if the employer cites other reasons. It is also important to contact someone in your Human Resources (HR) department if your company has one. Those who work in HR are experts in this subject. Our expert, Cathy, also wrote a great article about helping those who are disabled look for work.

How can I be helpful to a loved one who has MS who lives far from me? One of the best ways to provide support is to be there for loved ones when they need to talk, and show an interest in how this is affecting her or her life. Ask her how she’s doing, and listen to her response.

What is secondary progressive MS? Secondary progressive MS is a type of MS. While relapsing-remitting MS is the most common type of the condition, secondary progressive MS impacts many in the MS community. Here is some more information on SPMS.

What does it mean to be in remission? Being in “remission” doesn’t necessarily mean that your symptoms completely disappear (some people will return to feeling exactly as they did before the exacerbation began). Stephanie wrote a very comprehensive article on relapses and remission in her MS 101 on understanding relapses.

Where should a person who was just diagnosed with MS start? You should start with a request to see a neurologist– preferably one who specializes in MS – and have a complete workup of your history and an MRI. Unfortunately, it can take a long time to find answers.

We truly appreciate all of our community members who participated in our first AMA, and of course our amazing team of moderators who were feverishly responding to all of the questions during a very exciting hour! We will definitely be hosting more AMAs in the future, so we will keep the community updated when we have the next one scheduled!

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