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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Aquatic Exercise and Finding the Right Facility

Exercise is a great way to help maintain strength and endurance in order to better take care of your physical well-being. There are countless varieties of exercise trends and routines, but traditional exercise isn’t always the best fit for everyone, especially individuals with MS, due to the increased physical demand and rising body temperature.  Research conducted over the years has suggested that aquatic exercise is an effective way for individuals with MS to improve their flexibility, fatigue levels, and (most importantly) their quality of life and psychological well-being.

Take, for example, the way aquatic exercise has affected Mandy Iris.  “I can swim as angry as I want.  I can be as sad as I want, but it all just seems to melt away every time I jump out of the pool.  I feel better. It’s invigorating, it makes you feel alive,” says Mandy. Spending time in the pool and swimming a few laps, or just walking around in the pool can not only help strengthen your muscles, but allows you the time and space to clear your mind.

If you are looking to try aquatic exercise for yourself, and you’ve discussed this with you doctor or physical therapist, here are a few of tips for finding the right facility for you:

  1. Location – Find a facility within a reasonable driving distance or that you can get to using public transportation.
  2. Safety and Accessibility – Make sure that you are able to easily move about the facility and pool deck. Also, be sure that you will be able to get in and out of the pool with ease.
  3. Classes – If it interests you, see if the facility offers any aquatic exercise classes you can attend.
  4. Schedule – Find a facility or a program that works with your schedule, including work, child care, and personal preferences.

You can find more tips, resources, and inspiration to get started on MSAA’s Swim for MS Online Aquatic Center at: aquatics.mymsaa.org/aquatic-exercise/

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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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I’m Not Ready

This month we’re talking about wellness and this sort of fits in to wellness but it also just fits into life. I recently spoke with a young man and being the empath I sometimes am, what he said resonated with me on a person-to-person level. It’s not MS specific or specific for a gender, age, or race. This, I think, can be anyone and when I spoke with him it definitely was me. This young man not yet 25 years old had just found out he has MS and was not even out of the hospital parking lot contacted our helpline to…well honestly to vent. But not in an I just need to yell or scream or I need someone to blame way. His first words after Hello and the usual exchange of courteous pleasantries was “I’m not ready.”

Confused, I sat quietly trying to decide what, if anything, I should say in response and before I had crafted my next sentence he continued “I’m lost and I don’t know if you can help me but I am just not ready. I’m not prepared for this or know what to say or do. I am not open enough or smart enough for this. I’m not sick enough or old enough. I’m just not strong enough for this. I’m not ready.” We spoke for a while about the world he’d just entered, what he wanted to do next and what MSAA did. But mostly he spoke, listed and got lost in thought and I listened as he exhaled a breath he’d probably been holding for some time. Before finishing he asked me, “Do you have any idea what I mean?”

And I did; I do. I can’t relate to the diagnosis but I’ve been there, the I’m not ______ enough place. I’m not friendly enough, prepared enough, knowledgeable enough or good enough. I’m not helping enough, understanding enough, empathizing enough or listening enough. I’m not enough for them or won’t be enough to do this. I know I’m not alone in this (I don’t think I am at least), we all can get there from time to time. We aren’t ready, aren’t available, not right enough, rich enough or poor enough. We’re not well enough or sick enough or we feel we aren’t loved enough or able to love enough. We aren’t able to explain how we feel or why we feel the way we do. We’re not enough for them to stay or we aren’t ready to leave. I’m not sure, I’m not *you fill in the blank*.

It’s hard being able to admit the things we feel we aren’t. What we lack or perceive we lack. It makes us vulnerable and exposed, sometimes sad, but it’s also honest. Part of wellness, I believe, is acknowledging these “I’m not _____ enough” statements and facing the feelings they bring out in us. It’s taking the time to recognize the part they play in our lives and seek the assistance or understanding we need to address them. The “I’m not” statement doesn’t have to have the final say; it doesn’t have to be the whole story. I’m not sure if anyone will be able to relate…but just maybe they can.

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Embracing Change

By Stacie Prada

In the last three years so much of my life has changed.

My beyond-two-decades-long marriage was ending while my career took a completely unexpected and welcome turn. I moved to a new place, and I had a few surgeries. Valued in-person friendships were no longer nearby, and they shifted to Facebook interactions. All of my daily routines I had in place no longer fit into my new life, and I spent a lot of time redesigning them. Often it felt like my entire life was tossed in the air and landed scattered on the ground. Picking up the pieces and deciding how to arrange them again took up a lot of my time and mental energy.

Any of these changes would have been big for me, but juggling them all at once took a lot of effort. MS was a factor in this because I strove to maintain my health throughout these changes. My biggest goal was to avoid an MS exacerbation, and, fortunately, I succeeded.

Experiencing change can alter how I view the world, myself, my past, my future, and the people around me. It’s a mental shift from what I thought I could count on to knowing how vulnerable and impermanent everything can be.  The diagnosis of MS made me question my body’s abilities and health. I thought my body was strong and healthy. Being diagnosed led me to realize that a healthy and mobile future isn’t necessarily in my control. I can eat right, exercise, and get checkups, and still have no guarantee for good health or the ability to walk in my elder years.

Adjusting to change is a skill I’ve cultivated to save my sanity and bring myself mental peace. Some years ago, my New Year’s Resolution was to “Embrace the things that I resist.” It was a great experience acknowledging when I was resisting things and actively shedding the internal resistance I had to doing them. When I was nervous about running a public meeting, I decided to dive in and just do my best. When I liked a fashion choice that I thought might be too flashy, I decided to try it anyway. When the group sang karaoke, I got up in front of the group with my not-great singing voice and sang my heart out. I knew I might sound terrible or look silly, but I let myself have fun doing it.

My personal challenge that year allowed me to think about and recognize why I resisted things, and it helps to think about it when dealing with change. Most of the time my resistance stemmed from the following:

  • Uncertainty for what the next step was or how to decide
  • Being afraid that following that step would lead to an outcome I feared
  • Being overwhelmed from the quantity of things to deal with at that moment
  • Fear of making a mistake, making what I would later judge as a wrong decision, failing, or being judged negatively by others
  • Holding on to a belief that I have control over the future, others, or anything other than what I do, say or believe.

Coping with change:

With MS, a lot of change stems from the domino effect of losing mobility, cognition and physical abilities. Focusing on these losses can lead to depression and a sense of doom. When an exacerbation hits, it’s natural to worry about where it will lead and how it will affect the future. It’s all understandable and natural, but it’s also incredibly unsettling, frustrating and just plain hard. I try to embrace changes I’m resisting by doing the following:

  1. Recognize that feeling unsettled, nervous or fearful is natural. Accept it will be stressful but try to do what I can to minimize the stress.
  2. Think about why the change is stressful. Does it require changing my life, my relationships, or just my attitude?
  3. Seek inspiration and motivation from people who have lived through a similar change. What insight can they lend?
  4. Pace myself. Take on only a few extra tasks each week or month, and reduce some of the things that aren’t necessary for my physical or mental health. Know that my regular life still requires a lot of energy, and something needs to give temporarily.
  5. Know the deadlines and what’s at risk if they aren’t met. Give myself enough time to do things, but not too much so that it feels never-ending.
  6. Break down the steps to dealing with change into smaller doable tasks to avoid getting overwhelmed.
  7. Prioritize based on importance, deadlines, and energy level. If my energy is low, I’ll do the easy tasks for now and the more involved tasks at a time of day when I have more energy. Certain things may also be able to wait months.
  8. Wait to start until I’m ready to commit. I keep a list of things to do, but I don’t start until I’m ready to do them and complete them.
  9. Set realistic expectations and ambitious dreams.
  10. Look forward to something. Whether it’s seeing kids or grandkids grow up and being a part of their lives, traveling, dancing, watching the sun set, or anything else small or large that brings joy.
  11. Enjoy the path I’m on even when portions of it are difficult. Give myself credit for all of the things I do that aren’t hard because I’ve put so much effort in the past into getting better at them.
  12. Trust that I’ll do what I think is right for me each step of the way and that it’s enough.

Dealing with change has been a learned skill for me, and it’s taken a lot of effort to cultivate that skill. It’s been worth the effort to reduce my internal stress and increase my sense of contentment. Relaxing into and embracing change has improved my confidence, given me opportunities and experiences beyond my expectations, and made for a much more satisfied and joy-filled life.

*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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Annual AAN and CMSC Meeting Highlights

Every year, the American Academy of Neurology (AAN) and the Consortium of Multiple Sclerosis Centers (CMSC) hold meetings to present on topics of interest to the multiple sclerosis community.  This year, the annual AAN meeting was held in Vancouver, Canada in April and the CMSC meeting took place in Maryland at the beginning of June.

After each meeting, MSAA condenses all of the information presented at these meetings, which is meant for medical professionals, to easy-to-read articles to keep you informed about what is new in the world of multiple sclerosis.

Both meetings this year covered a range of topics, but here are a few items highlighted in MSAA’s annual review of these meetings:

  • Updates on a sampling of approved and experimental treatments
  • Trial results for new symptom-management treatments and programs
  • Interesting studies on pediatric MS, risk of MS, and children of parents with MS
  • Various other topics, such as gut immunity, the effects of poor sleep, and gaps in public awareness about MS

Read the full article on MSAA’s Latest News section to see more topics presented at this year’s meetings!

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Getting Back to Nature

Did you know that across our country there are amazing State Parks you can visit and enjoy?  What a great way to explore new parts of the country or even a local state park in your own back yard.

NPS-Centennial-ImageNow that summer is here, hopefully you have a little extra free time.  A great way to use that free time is to get out and enjoy nature.  Whether sitting in your backyard or going to a local park, taking in the sights, sounds, and smells of nature can be very relaxing and  therapeutic.

State Parks are also a great place to become one with nature.  While they might be a little further away, they are well worth the trip.

The state park entrance pass system works differently in each state. Many states offer some sort of pass that allows for unlimited entry at most state parks, while others offer park passes on a park-by-park basis. A few states do not charge entry fees to their state parks at all if you are a resident of that state.  Most states even offer a Disability Discount Pass for people who have documented disabilities.   All fifty states are listed below, with a link to their official state park website and information on their state park entrance pass program. Find your state, order an entrance pass, and enjoy unlimited access to the natural beauty your state has to offer!

 

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Where Did It Go?

I can’t believe that summer is halfway over! I remember as a kid my parents telling me that time speeds up as you get older and to treasure how summer was. Of course being the precocious child I sometimes was, I would respond ‘Oh please, you’re pulling my leg. Time is still the same no matter what”. But… my parents were right. Time has seemed to speed up and it’s weird but not being in school and having summer break to look forward to, the start of another school year to dread and those 3-ish months to soak up and enjoy as much as possible free afternoons and outings with friends, time and the summer just go running by. Remember when summer was special, it was what you lived all year for? You counted down the days right around Memorial Day. Started planning what you were going to do the first day off, how many times you were going to go to the pool, mall, movies, amusement park, Maria or Tim’s house (insert your own childhood friends names of course). The smell of summer, the warm breezes and long hours of light, it was all you could do to keep yourself in your desk ’til the last bell on the last day of the year. Then summer seemed like this endless thing in front of you.

Nowadays summer is the pretty much the same as spring and fall and winter. Work, weekends, occasional days off. Appointments, errands and holidays sprinkled in. Summer is going by pretty quickly and from time to time I sit in my car after a long day at work, on my back patio on a Saturday morning, or on a walk down some nearby trails and think where in the world did the time go. I know we’ve all heard it before ‘Make the most of the time we are given’ or ‘Stop occasionally and smell the roses’ and they seem like ancient clichés that we smile and nod to when people older than us expel them for our benefit. But truly as someone who is at 31 finally, albeit slowly, learning the value of the time I have, I’m telling you… stop for even a few seconds and really take in the sunrises and daylight that lasts past 8pm, cool breezes on hot days and small moments of reflection in this second half of summer before it’s gone. Slow down for a moment and just… take it in. Take in the here and now, the age you are and where you are. Appreciate the things you have and try not to dwell on the things you don’t. Appreciate the sunrises and sunsets, the ocean breezes off the shore, green leaves building canopies over walkways, the light streaks the sun makes thru windows, the sounds of kids playing without a care in the world. Don’t let time just go whizzing by and before you know it end up realizing that it’s August 31st and then think ‘Where did the time go?’.

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July 2016 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 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.

July Artist of the Month:
Karen Schatz – Atlanta, GA
Shark
Karen Schatz - Shark

About the Artist:
“My first love was art but I gave it up and went to work in legal IT to support my family. After years of horrendous hours I wrote off a lot of my weird symptoms to working such long hours. I went to numerous doctors but wasn’t diagnosed until last year.

Art has helped me find myself again. I can’t always hold the brushes, but when I can paint I always feel more like me.”
Read more

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The Social Butterfly

By Lauren Kovacs

Staying social is a huge obstacle for many people with MS. Even before MS, I was more of a wallflower than a butterfly. Now, I struggle with my inner hermit. I think I might be allergic to people.

Like a butterfly that has two wings for balance, so does a social life with MS. Balance is key to our safe and an even flight into the world. We cannot fly with one wing.

Socializing outside can inject heat into your plans. Just as you pack for a beach trip, pack your MS bag. Be prepared for anything. Good thing my sons are Boy Scouts. Being prepared is their theme.

Planning ahead makes for a smoother flight. Look at the temperature and the humidity level. Know where and how close bathrooms are. For me, heat boils my guts. Bubble, bubble toil and tummy trouble is my summer cheer.

Stay cool however you can if you are outside. Jumping into lake water might be your only option. In my case, flopping off the edge of the boat or being thrown in is my method. Air conditioning is best. Don’t suffer in silence. Butterflies are silent creatures, but let people know when you are too warm.

You need to know your limits. Boating above 80 degrees with high humidity is not an option for me. The lure of delicious KFC chicken and a good time are not enough for me to risk turning into a wet noodle with tummy issues.

Be a social butterfly when you can, on your terms. Butterflies are cold blooded and like the heat. However, like there are thousands of different butterfly species, heat effects us all differently. A wet rag slurring his or her words is no fun to be around. You don’t want to be a hermit, but socialize smart.

If my feet are cool, I feel better. Investing in several pairs of sport/water sandals is a must, for me. If I am neat water, my feet are in it. I always make sure to get a fabulous pedicure. Painting my own toes is just ugly.

It is a struggle to be social in summer. Be a butterfly when it is cooler. Sitting around a fire pit at night toasting marshmallows can be just as fun as boating with friends. Slap on some bug spray and enjoy the night. Butterflies are sleeping, but the owls are out.

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