The Brain, The Brain… The Center of The Chain

I think it’s over here… or upstairs… or in the trunk… wait, did I donate that??

Lapses in memory or just general forgetfulness can happen to anyone and doesn’t have to be directly related to any one issue or associated with any diagnosis in particular. In the world of MS though, Cognition Issues, or what is sometimes referred to as Cog Fog can be a significant concern. Cognition and overall Brain Health is a complicated beast especially within the MS community. Here are some general info and tips about helping to improve cognition and overall brain function and how to build in a defense against the Cog Fog.

The Brain, The Brain…. The Center of the Chain (yes, that’s a Babysitters Club reference)

  • While many factors may impact Cognition some big ones to keep in mind are Nutrition, Sleep and Stress
  • Nurtirion
    • A healthy diet (while there is not an MS specific diet, read balanced diet here) can help support brain function and health. Giving the body important nutrients it needs to use in cell building and repair
    • Vitamin E, Omega-3 Fatty Acids and other anti-inflammatory foods have been found to impact brain function in a positive aspect
  • Sleep
    • Sleep can be hard to come by but getting proper rest may trigger your glymphatic system which essentially helps flush your central nervous system (in part your brain) of buildup and toxins
    • Sleep allows your body to heal and repair cells that can help you get a fresh start on the next day
  • Stress
    • Stress is a big one as it can trigger an increase in the activity of your sympathetic nervous system and cause inflammation which can lead to issues associated with not only your cognitive system but also your immune system
    • Decreasing stress levels (easier said than done I know) can aid your body in being in a good spot defensively for illness as well as loss of attention and focus

Now none of that may be new news to you, but it’s good to be reminded that Nutrition, Sleep and Stress all play a part in our overall health and especially as it relates to brain health. So, what can you do to combat or alleviate some of the problems brought on by Cog Fog. We’ve heard some great tips from clients that they use and wanted to share

  • Notes, notes and more notes: when you think of or hear important information write it down on a post-it and put them up in a spot in your home that you pass by very often such as a hallway, bathroom or near the front door
  • Calendars are your friend: A large wall calendar can be purchased or if you want to be creative, drawn/painted/sketched onto a wall and similar to the notes put appointments, important dates and other information into it so you have it on hand
  • You are getting very sleepy: There are a lot of theories on how much sleep you should get, generally speaking we hear that 8 hours is optimal. But in addition to this try working on a sleep cycle. Sleep cycles last approximately 90 mins and there are 5 stages that you go thru during that time. It takes on average someone 15 mins to fall asleep. So try and schedule your sleep to include not only the 90mins in each cycle but also the 15mins at the start (its an average, I know it may not work for everyone in exactly that amount of time) and set alarms to wake up at what would be the end of a sleep cycle. You’ll definitely feel the difference
  • Meal planning: Seems like the whole world is on a meal plan or diet kick these days. But meal planning can be helpful when you are not only trying to have healthy meals but also when you are attempting to be intentional about implementing things like Vitamin E and Omega 3 fatty acids. Mark out a plan for your weekly meals (yes you can deviate to occasionally allow for that cheeseburger or pizza) and be intentional about incorporating healthy aspects into your diet

There are lots of other great tips to include, these are just some that we wanted to share and hope are helpful to you. Definitely share with us some of your tips and takes on helping with Brain Health. We’d love to hear them!

To continue the conversation about MS relapses during MS Awareness Month, MSAA will be hosting a live Ask Me Anything” event with Rohit Bakshi, MD, today, March 19, 2018 from 6:00 – 7:00 pm Eastern on MSAA’s Facebook page. And throughout the week, MSAA will be hosting free in-person events across the country.  Find an education event near you by visiting our Calendar of Events page.

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The Confusing World of MS Relapses

MS relapses continue to be one of the most notorious conundrums within the MS space and community today, which is one reason why the MSAA has made MS Relapse Management one of the MS Awareness Month activities this March. Many individuals living with MS question their symptoms and if they relate to relapses or not on a daily basis, no matter how long they’ve been diagnosed, because this issue remains a head-scratcher to those affected. This occurs because MS relapses can be difficult to diagnose, they’re unique to each person (like many other factors with MS), and they can sometimes be pseudoexacerbations and different from a “true” relapse. Several issues can influence whether or not a true relapse is occurring, these include other illnesses or infection, heat, stress, fever, and exercise. So how do you determine what is a relapse vs. a pseudoexacerbation vs. something else? This is a question that concerns many from day to day.

For a relapse to be considered there has to be certain signs and evidence pointing to it without other factors involved like those mentioned above. Symptoms may present as a worsening or recurrence of existing symptoms and/or new symptoms and need to be present for at least 24-48 hours. This is hard for individuals to distinguish sometimes, especially if it’s a symptom they’ve had before but maybe not recently, if they’re not sure that it’s an actual symptom issue, or if it’s a symptom related to MS at all. Another question that comes up often is how long do relapse symptoms last? The length of time can vary from days to months, again making it hard to know the exact ins and outs of relapses and all they entail. These are the type of great, valid questions to ask the doctor when and if the opportunity presents itself because it’s something many face and are unsure about.

Talking to others living with MS can also help to validate some of these questions and concerns too, to gain feedback and perspective from those dealing with the same types of issues. My MSAA Community, MSAA’s online peer support forum where those affected by MS connect with their peers, is one platform that can be used for this outreach. Additional information about MS relapse management can also be found through the MSAA’s online MS Relapse Resource Center and MS Relapse Toolkit publication.

To continue the conversation about MS relapses during MS Awareness Month, MSAA will be hosting a live Ask Me Anything” event with Annette Okai, MD, today, March 12, 2018 from 6:00 – 7:00 pm Eastern on My MSAA Community. And on Tuesday, March 13, 2018 from 8:00 – 9:00 pm Eastern the MSAA will be hosting a free Live Webinar “Helpful Tools for MS Relapse Management”  featuring Elizabeth Crabtree-Hartman, MD. Be sure to join in!

 

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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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