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.

Sleep? What’s That?

By Penelope Conway

At the end of an exhausting day yesterday, I collapsed into my bed and tried to sleep. You know, that thing where you curl up, close your eyes, snore and drool? Unfortunately, it didn’t work out for me last night. I spent the entire time wide awake through the yawns. A full night of sleep for me is more like a trip to a baseball game on a sold-out night than a trip to a relaxing spa.

Game night goes something like this…

You find your seat and settle in for the game with your team shirt on, a foam finger in one hand and a bag of peanuts in the other. “Play ball”…the game has begun, but since you are in the third seat on your row, everyone has to step over you to get to their seat. Your toes get stepped on by the first person coming by, you get smacked in the head with the next lady’s purse, and elbowed by the person after her.

You endure constant commotion and movement as people carry drinks and food up and down the row. One person even spills part of their drink on you. Then, just as the game is getting good, the person next to you starts talking so loud that you can’t even hear your own thoughts anymore.

You are stuck listening to everything about their job and the problems they are having with their boss…things you didn’t need to know, but now do…and in the process, you miss the epic play of the night. You were there the night a world record was set, but have to watch the replay to find out what really happened. You simply wanted to enjoy the game but it seems like there’s more going on in the stands than on the field.

That about sums up a night of sleep for me with MS: pain, dizziness, breathing difficulties, tossing and turning, muscle spasms, trips to the bathroom, and an overactive brain that won’t shut up. A night of sleep…I wish! Meds do help and for that I’m thankful.

When a friend tries to rationalize or downplay my fatigue, it can hurt. Many times it seems like the more I try to explain how tired my tired is, the more they try to fit it into their little perception box. Understandably so, they aren’t the ones living with it, but sometimes I just wish I could give them a taste of what my fatigue actually feels like. Maybe then they would get it.

I appreciate when a friend asks me to do something, but then is ok if I end up declining their invite because my body is simply too exhausted to function, even if it ends up being a last minute change.

Lately those times happen more times than I like. Sometimes just the thought of having to get myself dressed and looking presentable wears me out. If it’s not messy hair, sweat pants and t-shirt doable, it’s a lot of work.

Those that love me enough to give me the option to choose and then are okay if my decision is different than what they want or planned for, those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel and why.

The world is buzzing by at a hyper speed and it tries its best to force us to keep up with the pace it sets, but MS has given me a slower pace that requires pit stops and naps. Most of the buzzing about that the world wants us to do isn’t really important anyway.

I choose to hold onto the things that really matter in life like great friends, savory coffee and naps. Yes, naps are my new favorite.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (http://positivelivingwithms.com/) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Find Answers, Get Support, and Ask Questions on My MSAA Community

Remember the days when the best way to communicate with people far away was pen pals and old-fashioned snail mail? Technology certainly has come a long way since then! Now, there are hundreds of ways to connect with others via the computer or your mobile device – and MSAA wants to help! My MSAA Community, powered by our friends at HealthUnlocked, is a peer-to-peer online support forum that connects members of the MS community on a daily basis. As a member of this friendly, supportive, and safe online forum, you can ask questions, contribute to ongoing conversations, or start your own conversation about your personal MS journey. Here are three examples of posts that were recently shared:

Some words of encouragement for those who may need them:

A member asking for advice from someone who has experienced similar symptoms:

*Please note that if you are experiencing new or worsening symptoms, it is imperative that you speak with a licensed medical professional in order to receive accurate medical care and explore the right treatment options for you.*

Someone sharing some positive thoughts on a good day:

Of course, there are many other types of posts that are shared daily on the community – artwork from artists with MS, pictures of pets and animals that help ease anxiety, and more! If you would like to get started and become a member of My MSAA Community, please visit http://www.healthunlocked.com/mymsaa

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Love Your Pet Day

Many people who have pets will admit that they do not need an excuse to give their pet extra attention and a little pampering, but did you know that there is a National Love Your Pet Day coming up on February 20th?

Having a pet or any kind of animal companion can offer a variety of benefits to anyone.  Whether you are cuddling with a furry family member, or confiding your fears and frustrations to an attentive animal, our pets can reduce our stress levels, providing both physical and mental relief.  Who hasn’t come home after a long day with a desire to just say hello to your pet, give them a pat on the head, or a belly rub?  We can vent our frustrations and acknowledge the things that make us nervous and anxious to our pets, without fear of being judged for our thoughts. They support us without ever needing to actually speak back to us.

As some of our My MSAA Community members have said about their pets:

“Gidget is waiting for me every time I come home.  No matter where I’m at she finds me.  She is wagging from head to tail. I swear she knows when I’m sick because she follows me around like my little shadow.”

“My dog Razor has seen me through 5 ops in 5 years, never left my side.”

“My little kitty girl, Tux, is my daytime companion.  She follows me around and sometimes even rides on the back of my chair.  We like to sit in the sun and watch the birds in the trees in the backyard.”

Our pets are often considered an extension of our family and can easily be considered a care partner for many of us when we aren’t feeling our best.  How has your pet been there for you?

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February 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by multiple sclerosis (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.

Patricia Heller – Sturgeon Bay, WI
Poppies Reaching for the Sun
Patricia Heller - Poppies Reaching for the Sun

About the Artist:
“Diagnosed ten years ago, my life dramatically changed.

As the years have gone on, I have become better at both watercoloring and handling MS. With painting, I have learned to watch the movement of the water and the paint and capture it to create the images I intend. With MS symptoms, I have learned to listen to what my body is telling me and then use everything I have learned (meditation, relaxation, exercise, stretching, drugs, and best of all, WATERCOLOR PAINTING) to manage MS.””
Read more

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2017 Has Arrived

By Lauren Kovacs

It is tough to welcome a new year. Seems like I recently adjusted to it being 2016.  Alas, we must shed the old and embrace the new.  Shake it off.

Like anything with MS, don’t rush. Rushing does nothing good. Slow down.  Ease into 2017.  Take a deep breath and take a baby step into the New Year.

Setting wee goals makes the weight of the New Year manageable.  Don’t make a long list of goals.  Maybe do an extra few reps when exercising.  Doing 13 instead of 10 might be something you can do.  You can maybe add an extra pound to your weights. A few small goals are more realistic.

I know I soaked myself in gluten over Christmas and I never said “no” to Christmas cookies.  I was being polite.  Generally, it was a baked good free-for-all.  If it was within reach, I ate it.  I love candy too.  My daily PT suffered.  This month I am weeding out some gluten and doing part of my PT.

I started my New Year’s goals the day after Christmas.  A tiny bit each day does wonders.  I restarted my laps around the house.  I am trying to do at least one.  I am supposed to do three.  Wade in slowly.  No head first diving into 2017.  The water is cold so, most towel off and never go back in.  Don’t let too many goals shock your system.

I am trying to get off the couch more.  The butt marks on my couch don’t look good.  One of my sons got a real bow and arrow set from Santa.  (target tips) I go out and watch him practice.  I can’t get out there without help, but I am trying.  I am off the couch.

Take your time and slow down.  So what if it takes you longer to tie your shoes or hook you bra?  Rushing leads to frustration.  Slow and steady, as they say.  If you just can’t, after trying, ask for help.  Frustration leads to stress and stress is bad for MS.

In general, MS makes you slow down.  Take your time.  We run a very different race.  If I can shower without losing balance, when standing up to get out, it is a goal I reached. If I can comb my wet hair without smacking myself in the face, I met another goal. Take your time.  2017 is not going any place any time soon.

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Resolutions, Goal Setting and Multiple Sclerosis

By Susan Russo

Every year on January 1st, the first thought to pop into my head is “OK, it’s a new beginning, what do I want to do going forward?”

And every January 1st, I say “Well, absolutely nothing comes to mind.” Except coffee. I need coffee. And eggs and some bacon. So I climb out of bed and meander my way into the kitchen, all the while telling my son “Happy New Year Chris! We made it through another Holiday Season, still intact and none worse for wear.” Still not married, still alone, and still no grand babies for me to raise. Chris just grunts in unison, rolls back over in his bed and drifts back into his safe place. What that is, I don’t dare ask. All I hear is a muffled, low grade growl of “just stop it mom, pleeeeeeaaase!”

As I take my cozy seat at the breakfast table with my favorite blanket, (and, yes, it does get cold enough in winter to use a blanket in Houston) I begin to reminisce on the past few years. “How is my MS doing?” I ask. It answers back with a flush of burning, tingling, a bit of numbness, and a side order of vertigo, reminding me, “Hey girl, I’m still here. Did you forget about me?” And I’m like, “geez, sorry I asked.”

No. I have not forgotten. It’s just in the midst of all my goal setting, you simply slipped my mind.

And that’s just it. The thing about setting goals for the new year…it really is so important. Resolutions allow me to forget about multiple sclerosis, even for just a moment. Thinking of my dreams and aspirations brings me to a happy place. And by the time I finished my toast with jelly, I have a list of a thousand things I want to accomplish. We all know that feeling of elation. Yes, I can learn to swim so my MS will stop burning me, as I splash around in the pool like a halibut. Yes, I will become a world famous artist, move to the Fiji Islands, employ a cabana boy, drink ice tea, and paint until my heart’s content. And eat tons of potato chips. I love potato chips. And maybe have a glass of champagne. Just because I can.

Then, Boom! Reality comes knocking on the door. “You can’t ignore me forever! Let me in or else!” I sigh and take a gulp of my coffee, politely expressing to my reality to “go away, I still have bacon to eat.”

The thing about reality…it’s real and it’s relentless, and it never goes away. So, begrudgingly, I focus. One step at a time. One day at a time. One goal at a time.

  • I will take my Avonex on time each week. (I was tired of my MS injections, so I skipped a few. Don’t tell my doctor.)
  • I will swim 2 to 3 times a week.
  • I will eat healthy foods. (Yeah, like that’s gonna happen.)
  • I won’t pester my son about marriage and babies and wanting a corgi puppy.
  • I will create more art because I am totally talented and people like my work.
  • I will volunteer at the local police department because I have respect for officers of the law. (Actually, I adore a man in uniform, just sayin…)
  • And, I will find a cure for MS! It’s gonna happen people!

My point is this. It’s imperative to set goals, especially when we are in a battle with MS or other dreadful diseases. Unfortunately, they are a part of our lives. We cannot ignore them. So, include them in your dreams and aspirations. Keep it simple. Don’t set goals you know in your heart you won’t keep. Be kind to yourself. Reward yourself. Go see that movie that you’ve been wanting to see.

Remember this. No matter how crazy the world gets, if you have just one goal that gives you a sense of accomplishment, set it and follow through. When you succeed, pat yourself on the back. Smile. You did it. Then set another. And another. Pretty soon, you will find that resolutions can be made and effortlessly (well, you may have to exert some effort) accomplished, not just on the very first day of a new year, but anytime you wish.

The choice is yours. And know this, if you falter with your attempts to better yourself and the world around you, do not dismay. Time keeps coming. Days keep flying by. And January 1st will still be the 1st day of the new year. Always.

Time for resolutions and dreams, with an entree of bacon, eggs, coffee, and more bacon. And perhaps a little grand baby to cuddle.

Heck, I’d settle for the corgi puppy! I’ll name her Isabella.

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The Benefits of Creating Artwork… It’s More than Just a Pretty Picture!

Each month, we honor an artist from our Art Showcase in our Artist of the Month series.  But have you taken a moment to look through the Art Showcase to see what you’ll find? In addition to a wide variety of beautiful pieces of art, you’ll find personal stories written by the artists. These stories add a whole new dimension to the artwork, allowing you to read about the artist and learn what inspires him or her to create.

In looking through these stories, you’ll find one common theme: In addition to creating a piece of art, the act of doing the art is extremely therapeutic – and this is true whether drawing or painting, as well as crafting, knitting, or throwing a clay pot on a pottery wheel. It often changes one’s outlook and gives individuals a new purpose in life.

These positive effects are exciting to hear and are certainly not limited to MSAA’s Art Showcase! The entire field of art therapy is based on the benefits derived from the creative process and the resulting artwork, and these advantages may be experienced by children, adults of any age, healthy individuals, and individuals with physical, emotional, or psychological challenges.

Numerous studies have been conducted with healthy individuals as well as those with various conditions to examine the positive effects of creating artwork. One small study found that the women with MS who participated in a creative art program experienced significant increases in self-esteem, social support, and self-efficacy to function with MS (self-efficacy is the ability we believe we have to meet challenges and achieve goals). The study also saw a strong effect on hope. The authors concluded that creative art has the potential to enhance the lives of those living with MS.

Another small study conducted in Ireland found that the group of adults with MS who participated in creative classes experienced deep immersion in their artwork, offering respite from worry about their illness. The art-making processes and artwork created increased emotional wellbeing and promoted self-worth, while attending the classes provided an opportunity for social camaraderie and learning. Artwork even helped to support their identity and to accommodate functional losses associated with MS. Participants expressed the feeling that art was “opening new doors” for them.

The American Art Therapy Association at arttherapy.org explains that art therapy is a mental health profession in which art therapists use art media, the creative process, and the resulting artwork to help their clients to explore their feelings and reconcile emotional conflicts. Among other benefits, they note that art therapy can help people to foster self-awareness, manage behavior and addictions, develop social skills, improve reality orientation, reduce anxiety, and increase self-esteem. Anyone interested in learning about art therapy or locating an art therapist in his or her area may visit this website for more information.

It’s important to note that you do not need to work with an art therapist to enjoy the rewards of creating artwork, nor do you need to be an artist or believe you have any “talent” as an artist. While an art therapist may be very helpful to someone who is experiencing emotional or psychological issues, including depression or anxiety… or to someone recovering from an illness or coping with a medical condition… anyone is free to explore his or her creative side… and discover the positive changes associated with creating his or her own works of art!

Another informative resource on the value of art is the Be Brain Fit website. This site was created by two health professionals and cites many published works relating to the benefits derived through art and the creative process. In this section of their website, they explain that creating art is a very effective way to stimulate the brain and that anyone can do it. To follow are a few points from Be Brain Fit, all supporting the positive effects of artwork.

Art relieves stress by enabling you to become totally immersed and providing a distraction for your mind. As you concentrate on details and pay more attention to your environment, it acts like a form of meditation. Many of the new coloring books being marketed to adults were designed with the idea of reducing stress, and have even helped veterans suffering from post-traumatic stress disorder (PTSD).

Art uses both sides of your brain, encourages creative thinking, and enhances problem-solving skills. Art is thought to serve as a type of brain exercise and stimulates communication between various parts of the brain, creating new connections between brain cells. It also boosts self-esteem, provides a sense of accomplishment, and can help children to become better students. Art has even been shown to enhance cognitive abilities and memory for people with serious brain disorders, and has been shown to improve memory in individuals with Alzheimer’s disease or dementia.

Now that you know some of the exciting benefits that art has to offer, this might be a great time to give art a try! You can start with a pencil and paper, a coloring book and pens, a craft kit from the store, paints and brushes, or a scrapbook and glue… whatever you might find to be interesting and fun. You can even enroll in a local art class. The results will surprise you! And who knows? Maybe the next MSAA Art Showcase will feature one of your works!

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Show Your Support on this National Day of Service

Monday, January 16th is observed as a national holiday in honor of a great leader and activist, Dr. Martin Luther King Jr. In addition to being a federal holiday, Martin Luther King Jr. Day is recognized as a national day of service, empowering citizens to give back to their communities and help bring change in a nation so profoundly influenced by the courageous acts of Dr. King.

This day of service encourages our nation to have a “day on, not a day off” and support causes they feel a connection to. This is why MSAA encourages everyone to take part and offer a helping hand to those within the MS community.

There are many ways to give back and help improve lives in the MS community. Here are a few suggestions to help you get started:

  1. Donate your time by creating a fundraising event to benefit MSAA. This could be anything from a bake sale to a bowling tournament!
  2. Participate in Swim for MS – get creative and make your own unique swim challenge!
  3. Make a purchase from a company that supports charitable causes.
  4. Make a monetary contribution.
  5. Love using social media? Become a member of our Street Squad and help spread the word about MSAA!
  6. Perform a random act of kindness for someone in your community.

The hectic holiday season can certainly bring on a lot of stress. Allow this day of service to help you reflect on what you’re grateful for, and how you’d like to assist your community more in the New Year. We thank you for your continued dedication to our mission and hope you enjoy your volunteer work, whatever it may be!

We would love to hear how you are spending your Monday. Let us know what activities and service you are participating in either on our blog or on our Facebook page.

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MS Clinical Trials Made Easy with MSAA and Antidote

MSAA is pleased to announce that through a partnership with Antidote, a digital health company, we are now offering a clinical trial search tool on our website that will make learning about and connecting with MS clinical trials easier than ever.

While we remain dedicated to improving lives in the MS community through vital services and support, MSAA recognizes the value of having access to clinical trial information, providing important answers to researchers. This is why we encourage you to try Antidote’s clinical trial search tool.

Although some may be familiar with the purpose of clinical trials, others may not know or understand the benefits of these studies. Clinical trials are scientific studies that test the safety and effectiveness of new treatments for diseases, including MS. They often use patient participants; are conducted by universities, MS clinics, and neurologists; and must follow FDA-approved protocol so that all treatment is provided and all data is collected uniformly. No drug can be approved by the FDA until there is clinical trial proof of their safety and effectiveness.

The major advances in the treatment of MS in the last 15-20 years have only been because of data provided through clinical trials, which is why these studies remain so significant for MS research.

You can start searching for clinical trials for you or your loved one right now on our website. Click here to begin.

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New Year’s Resolutions, Taking Stock & Creating a Personal Health Reference Manual

By Stacie Prada

I used to think it was more important to just do things than to track them, but now I see the value in writing them down and acknowledging how far I’ve come over time. When the calendar year ratchets up and I think of myself as another year older, it’s a natural time to reflect and make goals. I like to review what I’ve accomplished, endured, thwarted and nurtured. When I’m feeling like I have a lot I still want to do, knowing how far I’ve come is a reality check for my expectations.

I aim for full life wellness, and I categorize my areas of wellness as health, home, relationships, finances, creativity and adventure.  At all times, I try to have at least one goal for each area. I like to incorporate small activities in my life that move me toward achieving my goals, and I like doing one or two large projects at a time that leap me forward on a goal.  Depending on my levels of energy and obligations, I’ll do a little or a lot on the larger projects. I try to establish and maintain balance in my life without sacrificing or ignoring another aspect of my life. My overarching goal is to keep working toward something while appreciating who, where and what I am now.

My 2017 Resolution: Take stock.

I think it’s helpful to take stock.  To think about what made me happy in the past, what I love about the present, and what I would like my life to be soon or someday. Committing those thoughts and ambitions to paper or a digital file allows me to look back over time to see if I still want the same things in life now that I thought I wanted in the past.

I’m taking stock figuratively and literally. I’m pouring through all of my personal belongings, my finances, my routines and my data. I’m compiling the things I’ve learned over the years since I don’t always remember something when I encounter it again. This will focus my attention on what I have, what I could adapt to use differently, what I still want, and what I’d like to upgrade for the perfect fit.

My Personal Health Reference Manual

A big project I’d like to accomplish this year is compiling all of my health information for things I’ve experienced, tried and currently use. I aim to create and maintain a binder for all the ways I keep my health in check. It will include all the successful and unsuccessful treatments.

The idea for this project came to me after my hip started hurting. I know that my hip can hurt when I jog longer distances, and I could tell that I’d overdone it. I believe the cause is foot drop that slightly affects my gait when I jog and triggers a misalignment in my hips to compensate.  In the past, I’d curbed my distances to deal with it. Sadly, it took hurting my hip twice in a month and six weeks of recovery time before it occurred to me I’d dealt with this before!  I remembered that I had physical therapy exercises from seven years ago that helped heal my hip from the same problem.  My hope is that using these exercises will not only allow me to heal my hip faster but prevent future injury and allow me to work back up to longer distances again.

This experience made me realize I need a personalized easy-reference health manual to manage my health with less stress. MS affects each person differently, and it requires constant adaptation to live successfully with MS. I want to reduce the amount of time spent enduring something and wracking my brain figuring out what will work for me in order to hasten effective treatment. An up to date personalized health reference manual will help.

The information I want to compile will include the following:

Conditions, Symptoms, and Injuries

  1. Indicators, triggers and causes
  2. Preventative measures including lifestyle choices, nutrition and activities
  3. Treatments including prescriptions, exercises, and natural remedies
    – Pros
    – Cons
    – When it’s effective
    – When it’s not effective
    – Why I choose this (or don’t)
  4. Experiences with this issue – what’s worked or failed
  5. Theories for why my body reacts a certain way – correlations proven and disproven

Sources of information I’ll use to compile this reference manual include:

  • Tracking calendars of health data and disease-modifying drugs
  • Notes I’ve taken at health appointments
  • Physical therapy treatments and exercises
  • My memory
  • My friends’ memories – often they recall things for me that I’ve forgotten
  • Books and internet resources that can trigger my memory for things I’ve tried but didn’t write down
  • Medical records from doctors

I’ve included a couple of examples at the end of this post that I’ve put together so far. It’s tailored to my health and experiences, so yours will look different. It’s also a work in progress, so I’ll keep adding and editing it as time passes and I change.

I wish I was low maintenance. Sadly, as I’ve aged I’m getting to be higher and higher maintenance. I joke that at least I’m doing the maintenance and not pushing that responsibility onto other people!

That said, if I do ever need help with my health, this will be a great tool for anyone helping me.  They’ll know what I’ve already tried, what works, and what hasn’t worked. I won’t need to start from scratch with each new provider.

This is organizing my health from my information and experiences. It frees me from relying on information from the web each time I confront an issue. Sometimes the information can just be too much, and what will help me gets lost in the mass of opinions and recommendations. This is organizing around me and benefiting from the decades of experience I have being me.

Examples of pages from my Personal Health Reference Manual:

Condition: Vertigo and dizziness with nausea

  1. Indicators, triggers and causes: crystals in ear out of place
  2. Preventative measures: none
  3. Treatments: Epley Maneuver to put crystals in ear back in place
    Pros: Non-invasive, I can do it at home, and no side effects. Immediate results.
    Cons: none
    When it’s effective: When dizziness is caused by ear crystals out of place.
    When it’s not effective: If dizziness is caused by something else.
    Why I choose this for now: It’s an easy fix.
  4. Experiences with this issue, what’s worked or failed. I experienced dizziness and nausea for a week before seeing my neurologist. He did the Epley maneuver to me on one side and it didn’t do anything. He did it again on the other side, and immediately my vertigo vanished! He taught me how to do the Epley maneuver at home, and I have used it a couple times over the years since. When I need a refresher, I’ve found a Youtube video to remind me.
  5. Theories for why my body reacts a certain way, correlations proven and disproven: It’s common.

Condition: Fatigue

  1. Indicators, triggers and causes:
    – When numbness intensifies or spreads from the usual areas
    – Spring and Fall when the seasons change
    – Less daylight in winter
    – More obligations than usual after work or on weekends
    – Workdays that involve constant personal interaction without breaks
    – Relationship stress
    – Big events – both happy and sad!
    – Long periods of added stress
  2. Preventative measures: Track fatigue level daily and adjust activities and treatments based on fatigue level.
  3. Treatments:
    1. Coffee/caffeine:
      Pros: It lessens light or moderate fatigue effectively and temporarily, it tastes good, it’s accessible, I don’t need a prescription, fewer side effects than other methods
      Cons: It can adversely affect sleep and intestinal health. Dosage can only go up to a certain level before getting jittery and anxious. I felt better physically (except for fatigue) when I went without coffee for a month.
      When it’s effective: For minimal to moderate fatigue.
      When it’s not effective: When fatigue is extreme.
      Why I choose this for now: I like it and it fits within my lifestyle. While I need to work in an office setting, it’s helped me maintain.
      Experience: Green tea inflames my throat. Caffeine tablets were harsh on my stomach. I may as well drink coffee and enjoy it.
    2. Rest:
      Pros: It’s helpful
      Cons: It’s isolating, it can conflict with life obligations.
      When it’s effective: At least some rest daily, but more intensive rest needed when fatigue is heavy or extreme.
    3. Modafinil (Provigil):
      Pros: It’s effective
      Cons: It requires a prescription, and my insurance doesn’t cover it. Out of pocket cost was $120 for six pills in 2012. (Could check on this periodically to see if it’s changed.)
      When it’s effective: It can help me get through periods of time when I’m not able to limit my obligations to get more rest. It’s a good temporary option if I can get an Rx.
    4. Exercise:
      Pros: Moderate exercise helps reduce fatigue. It’s good for weight management. It helps keep me mobile and able to experience lots of activities.
      Cons: Hard to always gauge how much exercise is enough and how much is too much. Too much extreme exercise over months can tax my body and lead to more fatigue.
      When it’s effective: When I’m not injured or severely fatigued.
    5. Organization & Prioritization:
      Pros: It lessens stress and frees up mental and physical capacity for reducing stress.
      Cons: It takes a lot of thought and practice to create organization methods.
      When it’s effective: Pretty much always.
    6. Blue light
      Pros: Non-invasive
      Cons: Daily time investment required, and the results aren’t immediate. Hard to gauge if it’s helping or not. It was an expensive investment without any assurance it would help.
      When it’s effective: Fall and winter when the days are short where I live.
    7. Limit activities
      Pros: Helps free up time for rest and sleep.
      Cons: It can get depressing and make me feel like I’m being punished.
      When it’s effective: When I’m still able to do things that satisfy me emotionally.
  4. Experiences with this issue, what’s worked or failed. I used a blue light in 2010 through 2012. I think it helped, and I should pull it out and try it again this winter. I don’t need it in the summer and I forgot I had it. Exercise, rest, coffee, and good nutrition work for daily maintenance. Modafinil works well when I need to keep going for a week or so beyond what my body would prefer. Rest is required to recover from overdoing it.
  5. Theories for why my body reacts a certain way, correlations proven and disproven: Fatigue is the #1 symptom common for people with MS. With so much damaged nerve insulation (myelin), it takes more energy to do common tasks than for someone with healthy myelin. My neurologist explained that the energy it takes a healthy person to walk a mile may be an equivalent of a mile and a half or two miles for someone with MS.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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