MSAA to Host “Ask Me Anything”

Do you have questions about multiple sclerosis that you’ve been meaning to ask? Here’s your chance!

Join the Multiple Sclerosis Association of America on March 29, 2017 at 6:00 PM for an Ask Me Anything session with MS Expert, Dr. Barry Singer, on My MSAA Community. For one hour, Dr. Singer will answer your questions about MS posted in a designated conversation thread on the Community.

WHAT: MS Awareness Month “Ask Me Anything” (AMA)
WHO: MSAA and Dr. Barry Singer, Director of The MS Center for Innovations in Care in St. Louis, MO
WHEN: Wednesday, March 29th, 6:00 – 7:00 PM EST
WHERE: My MSAA Community on HealthUnlocked

If you would like to ask a question during the Ask Me Anything session, you will need to have or create a profile on My MSAA Community, our peer-to-peer online community in which you can share your MS journey, connect with others, and contribute to ongoing conversations – all from your phone, tablet, or computer.

Join us on My MSAA Community for this special “Ask Me Anything” session during MS Awareness Month to get answers to your questions!

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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.

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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.

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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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Why Do I Cry or Laugh Inappropriately?

As MSAA continues to highlight important MS symptoms during MS Awareness month, this week, Pseudobulbar Affect Awareness Week (week of March 14, 2016), MSAA invites clients to learn about this lesser-known but very impactful symptom by watching a recently produced video featuring Daniel Kantor, MD.

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In this one-on-one interview, MS expert Dr. Daniel Kantor provides valuable insights into understanding PBA and its cause, the differences between PBA and depression and other mood disorders, guidance on discussing PBA with your doctor, and ways to evaluate and treat the condition.

More information, including a survey on PBA can be found at mymsaa.org/pba.

Share your symptom story in the comments below. How has PBA affected your life?

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Just Take It One Step at a Time- Part 2

By: Amy McKay, M Ed, CSCS, CES

Revisit Part 1 of this two part series by Amy McKay, certified Strength and Conditioning Specialist providing “useful tips on how to improve each part of every step you take”.

FLEXIBILITY

Let’s face it, as we age our bodies lose their flexibility and elasticity. Before you know it, what used to just be a stretch, is now a strain! Flexibility is known as the quality of bending without breaking. As it pertains to walking, flexibility of the knees, ankles, feet, and toes is critical to a successful stride. Here are a few things to try to keep your feet feeling sweet.

  • Spread your toes out! Our toes were designed to move freely and independently. Purchase shoes that allow your toes to wiggle while they work. Choose footwear that has a sturdy sole and provides cushion and support while you walk. When you shop for shoes, shop late in the day. Our feet tend to swell up to a half size as the day goes on. And, walk around in the shoes in the store at least 10 minutes before you make your purchase.
  • Getting a proper pedicure is a necessity, not just a luxury. Proper care of your toenails and calluses is imperative. Overgrown or ingrown toenails, thick calluses, or blisters can make walking painful and very inefficient.
  • When it comes to your ankles, the best way to keep them mobile is to think about tapping your toes up and down, pointing and flexing your feet, and making imaginary circles in both directions. Having adequate ankle mobility will help prevent drop foot and ensure that the traveling foot lands right where you had planned.

TORSO STABILITY

Torso stability is a vital factor in taking a successful stroll. Without a stable torso, the low back carries more than its share of body weight causing pain and discomfort. Stability is defined as having the strength to stand or endure. Experiment with the following activities to add strength and stamina to your torso.

  • Do squats every day. Squats will strengthen all of the muscles surrounding the torso. The added torso strength will help the hip, knee, and ankle joints function more efficiently with each step. A squat is an exercise that can be modified to ANY fitness level. Simply start off by sitting down in a sturdy chair and then standing back up! Feel free to use the arms of the chair or push your hands against your thighs to help you. Repeat this 5 to 10 times in a row. Once you have successfully mastered that, try repeating the same thing without using your arms to do any of the heavy lifting! The next step would be to pretend like you are sitting in an “invisible chair” behind you. Begin your daily squat program by doing just 5 to 10 squats per day and progress from there. This movement is one of the most fundamental skills for the human body.
  • Practice perfect posture. We live a world that has us in a forward flexed position. Activities such as using your phone, tablet, computer, and even driving makeup a large portion of our day. The best way to counteract the forward flex position, is to realign your spine starting from the top. Use your “ESP” to coach yourself with these 3 quick verbal cues:
    1. Extend the crown of your head directly to the sky.
    2. Squeeze your shoulder blades together.
    3. Pretend like you are zipping a jacket up!

Tying it up…

So, whether you are stepping out on the town or still shuffling through the grocery store, building efficient walking patterns can allow your body to move more with less effort. These new ideas about the complex skill of walking may allow you to move throughout your day with less fatigue and more energy to do the things you enjoy. This could add to your overall quality of life and improve your life today. Keep learning and keep practicing these exercises. So, put a smile on your face and just take it one step at a time.

*Amy McKay is an Assistant Professor at Tarleton State University in Stephenville, Texas. She is a certified Strength and Conditioning Specialist for the National Strength and Conditioning Association, a certified Corrective Exercise Specialist with the National Association of Sports Medicine, a certified Sports Nutritionist and Specialist in Exercise Therapies with the International Sports Science Association, a certified Personal Trainer with the Aerobics and Fitness Association of America, and a Youth Nutrition Specialist with the International Youth Conditioning Association. She is an avid marathoner and tri-athlete. Amy believes that modifying exercise is necessary for everyone and strives to “find a way” for all to be involved. Her personal motto is to make every day “the best day ever!”

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Just Take It One Step at a Time- Part 1

By: Amy McKay, M Ed, CSCS, CES

When was the last time that you actually stopped and thought about the process of walking? Did you know that you could actually improve the efficiency and effectiveness of each step you take with a few simple changes? Put your best foot forward as we explore ways to create a great gait pattern.

Efficient walking starts with your brain. Begin to start thinking about walking. Walking is a complex motor skill. It involves balance, coordination, flexibility, and torso stability. As we stop and study each of these topics, I will provide a few useful tips on how to improve each part of every step you take.

BALANCE

Balance is a very important part of walking. With each step taken, there is a brief moment of balance on the foot that is in contact with the ground. Balance is a skill related component of fitness and can be improved with practice. Balance is defined as an even distribution of weight enabling someone or something to remain upright and steady. When balance skills are compromised, the typical compensation is to shuffle the feet, instead of actually placing one foot in front of the other.

Try adding this simple exercise to your daily life to improve your balance.

  • Practice standing on one foot while brushing your teeth, drying your hair, or working at your kitchen sink. The great thing about practicing this skill while in these locations is that you have the counter right in front of your to provide safety and support when needed. Simply start with 5 to 10 seconds at a time and build up from there. You will find that you are more successful on one side than the other, so be sure to practice BOTH sides.

COORDINATION

Are you one of those people that can walk and chew bubble gum at the same time? That seems to be our society’s check point for coordination. Coordination is defined as the organization of the different elements of a complex body or activity that enables them to work together effectively. Our bodies are complex machines that are made for movement. When they are properly tuned up, all of our daily activities, including walking, happen with less effort and more ease. Activities that cross the midline of the body have been shown to enhance coordination skills. Add these activities to daily routine.

  • Alternate reaching your right hand all the way across the left side of your body, then your left hand across right side. Repeat this movement 10-20 times each side per day. This not only enhances coordination, but also is great for the range of motion in your shoulders.
  • While standing with support nearby, alternate touching your right elbow to your left knee followed by your left elbow to your right knee. Start with just 3 or 4 repetitions on each side and then add more as you begin to feel stronger. This activity can help with your balance, coordination, and can provide stability and flexibility training for your spine.
  • Shake things up and take a dance class or just crank up your favorite tunes and move to the beat. Dancing is a great way to enhance your coordination, improve cognitive function, and is a FUN way to get some exercise!

Check back on Wednesday, March 9th for part 2 of Amy’s Just Take It One Step at a Time post.

*Amy McKay is an Assistant Professor at Tarleton State University in Stephenville, Texas. She is a certified Strength and Conditioning Specialist for the National Strength and Conditioning Association, a certified Corrective Exercise Specialist with the National Association of Sports Medicine, a certified Sports Nutritionist and Specialist in Exercise Therapies with the International Sports Science Association, a certified Personal Trainer with the Aerobics and Fitness Association of America, and a Youth Nutrition Specialist with the International Youth Conditioning Association. She is an avid marathoner and tri-athlete. Amy believes that modifying exercise is necessary for everyone and strives to “find a way” for all to be involved. Her personal motto is to make every day “the best day ever!”

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

All-New Artists for MSAA’s 2016-2017 Art Showcase!

As part of MS Awareness Month, MSAA is very proud to present our 2016-2017 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:

MSAA's 2016 Art Showcase MSAA's 2016 Four Seasons Art Showcase

As in the past, we will highlight one Artist of the Month throughout this year and share their artwork and their story.

Presenting MSAA’s Artist of the Month for March

MSAA is very excited to present the first Artist of the Month for our 2016 Art Showcase:

March Artist of the Month:
Ginny Townsend – Montgomery, AL
Field of Flowers
Field of Flowers by Ginny Townsend

About the Artist:
“Before I was a wife, mother, grandmother; before I had MS, I was ME! It took a decade for a diagnosis! What a relief to finally know!

In between exacerbations, I ignored “MS”. Maybe it would ignore me! Then 9-11 happened. On 9-12, I had a major exacerbation. I became permanently disabled. At first I was in a wheelchair. Now I use a cane and walker. I was bored so I began painting on mayonnaise jars! I also paint on canvas.”
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Heard about our 2016 Improving Lives Benefit and Online Auction yet?

Benefit_SliderOur Online Auction is Now Open!
Event attendance is not required for this special opportunity. Click the Online Auction link below to view the packages and register for bidding. More packages available soon.

Please note: online auction will close on Wednesday March 30, 2016 at 9:00 PM EST.

Live! Online Auction

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MSAA Celebrates MS Awareness Month

While every day here at MSAA we strive to improve lives today through vital services and support; March is a very important time of the year. MSAA is proud to launch the March is MS Awareness Month campaign. Throughout the month of March, MSAA will heighten awareness around MS symptom and relapse management, dedicating each week to a particular MS symptom or issue.

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Walking Awareness and MS (week of March 7th) – featuring comprehensive information on walking and MS with a newly developed awareness survey, a video provided by Acorda Therapeutics, blog posts by our guest bloggers, and social media posts. Content posted to www.mymsaa.org/walking.

Pseudobulbar Affect (PBA) Awareness (week of March 14th) – featuring MSAA’s new MSi video on PBA with Dr. Kantor, a patient-focused awareness survey, blog and social media posts. Content posted to www.mymsaa.org/pba.

MS Relapse Awareness (week of March 21st) in collaboration with the Multiple Sclerosis Foundation – featuring a newly developed Relapse Awareness Quiz, an updated version of our Understanding and Treating MS Relapses brochure, and blog and social media posts. Content posted to our MS Relapse Resource Center – www.relapses.mymsaa.org.

Have you visited our new website yet?

MSAA recently unveiled our newly redesigned website, MyMSAA.org. With a clean, mobile-friendly design, the new mymsaa.org features enhanced graphic images, links to important topics including MS Symptoms, Treatments, and information specifically for the Newly Diagnosed.

Check out all of the enhancements and features at mymsaa.org and let us know your thoughts!

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March is MS Awareness Month, & I’m More Aware Than Ever


By: Jeri Burtchell

I don’t know about you, but life with MS makes “awareness” unavoidable for me. I start the day with a symptom check, happy when I can make it out of bed and put one foot in front of the other. As I progress through my day, I’m constantly reminded of MS at every turn. It might be the alert on my phone that reminds me to take my medication or a check-up for the clinical trial I’m in. It may even be my drop foot that trips me up and sends me into a catbox face plant. And every once in a while it’s a wistful sadness as I take stock of all this disease has robbed from me. I try not to dwell on things I can’t change, but still I am “aware”.

March is MS Awareness Month–when we draw others into our world, giving a glimpse into what our new reality has become, in order to build understanding and compassion. Very few of us who have MS need our own awareness raised.

Sometimes sharing with family and friends can be awkward. I catch myself feeling like I’m whining or complaining when really all I’m trying to do is explain what life with MS is like. Just trying to raise awareness. Sometimes I close up and choose not to share, simply because it means I’m forced to think about it myself when that’s the last thing I want on my mind.

But during March I feel an obligation to “do my part”. I want more heads nodding in understanding than noses wrinkling quizzically at the mention of “multiple sclerosis”. I want more people saying “guess what I heard about a new breakthrough for MS!” The only way that’s going to happen is by all of us sharing our stories, or drawing people in somehow.

We might not have an ice bucket challenge on our side, but there are things we can do besides just posting pictures of awareness ribbons. And there are ways to work in a little levity so people aren’t just awkwardly trying to move on after your conversation has left them feeling sorry for you, or worse, confused. I’ve been giving this some thought and here are some ideas I’ve come up with…

If you’ve lost sensation in your hands, you could ask your friends to put mittens on and try to make it through their morning routine (all except for shaving or pouring coffee, maybe). Tell them you can’t feel things or control your movement as well as you once could. For some people with MS it feels like wearing gloves or mittens.

jeri blogOr how about a “Sit-N-Spin for MS”? Do they still make that toy? Get grown adults to challenge each other to spin like crazy while someone takes a video. When they get up to walk they’ll be walking like we do with MS, stumbling around and bouncing off walls.

When others are forced to experience things that closely resemble symptoms of MS, sometimes they are profoundly moved. “I get it, now!” is something I hear a lot.

If your family and friends aren’t up for the MS experience, maybe recording your thoughts on living with MS in a video would help. Things that are hard to say face to face can be easier to share in a video sometimes. Healthline.com has launched a campaign called “You’ve Got This!” where those with MS are encouraged to submit a video of their experience, giving hope to the newly diagnosed.

Each time you share your experience, whether with your friends at home, through posts on social media, or even videos enlightening and encouraging others, you are building awareness and drawing the attention to the bigger picture.

To end this disease we’re going to need a lot more research, and that means a lot more funding. When people understand how MS can impact our quality of life, the awareness spreads. When you use your own story to engage others and spread the message, it can be a very empowering experience.

Not only will you be helping others to understand what we live with every day, but you will gain so much satisfaction from feeling like you’re doing your part as well. We might not be able to cure MS ourselves, but we don’t have to sit back and passively take what this disease dishes out in silence. Compassion starts with understanding. Understanding comes from communication.

Be the voice of MS, if only for one month, or week, or even a single day this year. You won’t regret it.

Resources:

http://www.healthline.com/health/multiple-sclerosis/youve-got-this

Photo credit: oddharmonic

*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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Spreading Awareness: Advocating for Client Needs

This week, in honor of MS Awareness Month, I spoke with a group of nursing students at Rutgers University in New Jersey regarding chronic illness and the role nurses play in patient advocacy and referral. This event highlights the importance of spreading awareness and educating those working directly with individuals affected by this disease.

While explaining the various factors associated with MS, we explored a variety of resources available to individuals. Nurses have a unique and valuable role in the medical team – they are often the first person a client sees in a medical team giving them the opportunity to hear and learn the ins and outs of an individual’s life. With this knowledge, nurses have the opportunity to discuss options and make referrals for clients.

It is vital that nurses view themselves as patient advocates and make referrals or speak to the medical team regarding any concerns they may have for the clients care. Some conversations are difficult to have with physicians; clients feel pressure during the short visit and do not get a chance to discuss their concerns. Often times, working closely with a nurse for some of the non-physician or non-medical related concerns can be helpful.

Hopefully the conversation with the nursing students set them up to become better patient advocates in their future roles as nurses!

Have you worked with a nurse for assistance with referrals to organizations or assistance programs? How was that experience for you?

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March is MS Awareness Month

By: Ashley Ringstaff

I know there are a lot of questions many people with MS ask themselves… and some of those questions are based upon being involved in the MS Community. How can we get involved? How can we make a difference?

I thought I would try and share my thought on this subject, for the month of March, which is recognized by many as Multiple Sclerosis Awareness Month. There are a lot of events that you may see online, on social media, and many other places. But how can we get involved?

I do a lot of advocacy for multiple sclerosis all year round, and I don’t usually attend huge MS events in order to do so. I do small, but meaningful things to raise awareness about multiple sclerosis.

The obvious one, is that I blog… but before I even started writing; I became a volunteer with MSWorld.org where I am a part of an Online Support Group for MS Patients & their Caregivers.

However, I feel that advocating really needs to go BEYOND just the MS Community, and advocated to the general public. When I have been out in public, someone will ask me what MS stands for, because I was wearing an MS t-shirt. So I explained to them what it was. Just passing along information to a few people can spread the word. Once you have given the person information, they will probably relay it to someone else they know.

I use my social media outlets to raise awareness about multiple sclerosis. I’ve done lobbying before; I do as much as I can. However, we can’t just depend on a few people to raise awareness for MS. We ALL need to take part in some sort of way.

Do you remember hearing/seeing about the ALS Ice Bucket Challenge? I saw a lot of people with MS wanting to do something like that, to bring awareness for MS. While it’s a good idea, it’s very hard to ‘copy cat’ an awareness project. But ALS is also a neurological illness with no cure, so the research being done for ALS, is most likely going to benefit the MS community in some way or another.

I’ve seen videos online of people at the mall putting up a booth, and having people who are shopping at the mall, “Try on MS”. There are so many things being done to raise awareness for MS around the World. I don’t feel like we all have to have a ‘theme’ to raise awareness, just spreading the word can do a lot.

However, I will be contacting my local news stations, letting them know that March is MS Awareness Month – and if they can do some sort of coverage on it. I’m going to make a shirt that says, “Ask me about multiple sclerosis” … original right? But it will get people wondering. Even if they don’t come up and ask me, more than likely, they will look it up on their phone.

Get involved with your local organizations group… whether that’s with MSAA, NMSS, or just something you and others you know with MS in your area get together once a month. Discuss with each other how you can make a difference in your community.

At MSWorld, we made a campaign to “Live Beyond MS: Breaking the Silence”. When I speak to people that have MS as well as their loved ones, they all want to know when a cure will be available for us. That’s a good question… but I’m not going to sit around and just wait for researchers to give me the answers we are looking for. Why? Because the bottom line is, the more people who know about multiple sclerosis, the more funding we will get for research, the closer we are to a cure, re-myelination, Stem Cell… the list goes on and on.

So, what is the conclusion to this article? Don’t wait for someone else to do something to bring awareness to MS… start doing it yourself, every bit you do makes a difference, whether you believe it or not.

xoxo
Ashley Ringstaff
MSWorld Volunteer
Diagnosed in 2010
Blogger for MultipleSclerosis.net
Follow me on Facebook
Follow me on Twitter

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