Introducing My MSAA Community for People Affected by Multiple Sclerosis

My MSAA Community (1)MSAA is excited to announce that, in partnership with HealthUnlocked, we have launched a new peer-to-peer online community called My MSAA Community! This free online forum is a safe place for anyone who has been affected by MS, whether they have been diagnosed or are a care partner, to share their stories and find information and support.

Sometimes when you are going through something personal and you try to share your feelings or your experience with someone who hasn’t been through the same thing, you can find yourself hitting an emotional wall.  The person you share your feelings with may be able to empathize and understand what you are sharing to a certain extent, but they may not fully appreciate what you are going through, since they haven’t experienced it themselves.  In these situations you can feel like you need to talk to someone who “gets it” and has been through what you are going through.

My MSAA Community is designed as an online community and forum for people whose lives have been affected by multiple sclerosis to find each other and share their experiences as a way of providing support and information.  This community allows members to post questions and get answers from others on the forum and contribute to other ongoing conversations.

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What is Your Perspective?

On our helpline here at MSAA we speak with clients every day from across the country who contact us for any number of things. Resources for assistance, information on our programs, clarification on something they saw or read on our site or in our publications and at times they’re looking for someone to speak to who they can bounce ideas off of or just have a listening ear. Recently I spoke with a client who was more newly diagnosed and called to get some broad spectrum information. What struck me at the end of our call was that the client taught me probably more than I did them.

During our conversation we happened upon the idea of changes in perspective. They recounted to me how their world had very much changed when they were diagnosed with MS, in the not too distant past, and how at first they were not sure at all what to do. There were lots of questions, some of which were unfortunately met with little, or vague answers. New terminology to learn. Medicine to juggle. Periods of anger, frustration, and sadness. New planning to do they hadn’t thought of before. I listened as they recounted one such day that found them sitting on the bedroom floor in the dark not sure of what to do next. Unaware of the time that was passing, just sitting. “This,” they told me, “was my finding perspective. I sat on the floor recounting stories to myself of events in my life, and in the middle of my thoughts I found a new way to see things.” After a good deal of time angry and upset on their bedroom floor they sat and recounted all the events that made them proud, excited, and happy. The client didn’t want those events to be the only memories with a happy connotation that they would ever have. All in the past.

The client said they pulled out some scrap paper and made lists of the things they were angry and frustrated over.  Things that they felt they had lost or missed. Along with that, they scribed a list of the things they enjoyed, they wanted to do, they were good at or had interest in. This list, they said, was there perspective. This list was longer and when they read it over they found in it thoughts of how to still visit all the European countries on their bucket list, while dealing with the uncomfortable temperatures. How to volunteer and be part of their community while working in different time increments or events. There they thought of how best to use their love of blogs, working with people and photography to connect with others and raise awareness.

They said they had two ways to go about this and the one they were deciding on was to choose their attitude not to let their attitude be chosen for them. They looked at the list of things they were angry over and decided to choose their attitude toward it. Would it always be easy to change the way they thought about being diagnosed?  No. But if they chose to change their perspective, not from the things they had lost, but toward the things they had and could do, and use and focus on those…it gave them a different perspective. “That,” they told me, “got me off the floor onto my bed.” Then a little while longer to their dining room table where they started to brainstorm, make some new plans and objectives keeping their MS in mind, but not letting their MS choose the plans. Perspective is just what you make it and sometimes that’s easier said than done. But we all have a choice to make in changing the way we look at things. What is your perspective?perspective


Who Likes Change?

So honestly I’ve never been one to ever really like change. Even when I was younger I don’t think I was as resilient as other kids around me when it came to change because I always seemed to struggle with it. Even as I continue into adulthood change can still create feelings of anxiety, confusion and discomfort at times. And this can occur with good change too; I think it’s the concept of something being different than it was before that I have trouble accepting, especially when it’s a change that I have no say over. Now don’t get me wrong, certain types of changes can be good, when they produce positive and beneficial differences in life and particular circumstances. But in general I think we struggle with change because it has great influence over our control and expectations. It’s difficult to like change if it’s something you didn’t ask for or that was necessarily warranted, especially if its arrival produces unwelcome challenges. So what do you do when change comes along?

Everyone’s coping mechanisms are different when it comes to dealing with change. Some individuals try to meet change head-on and seek out ways to adjust and adapt, while others try to fight change and work hard to deny it and refuse acceptance of it. Some look to others for support during times of change, whereas other individuals prefer to be alone to cope with it. What’s important to know is that everyone has experienced some form of change in their lives, and while none of the changes may look exactly the same, the ways in which people try to cope with it can look very similar. There are no absolutes when it comes to facing change—no specific right or wrong way to work it out. But you have more control than you think in these situations; you’re the one who gets to decide how you want to approach change in those moments and how much influence it can truly have.

How do you cope with change?


Feeling Good About Change

Alan Watts QuoteEver think and reflect on your life and think why change is so hard, the fear of the unknown, scared to move forward, afraid of being judged?

You are not alone. Some people know that they need to make changes in their lives. But often, they find themselves taking the path of least resistance and don’t make the changes even if it means remaining unsatisfied. People stay in relationships that aren’t good for them. They keep jobs that bring them no joy. There is nothing wrong with change, especially when it has the potential to bring happiness.

If you do not have the life you desire, you need to make changes to reach your goals.  Change can be difficult and stressful but when you embrace change and recognize all of the good which it can bring to your life; change is no longer frightening. Remember, nothing good was ever achieved without taking a chance and making changes. The key to successful change is to embrace change for all that it is worth and move forward with your goals. Know that there will be setbacks along the way but you have the ability to overcome them.



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 


August 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.

August Artist of the Month:
Carol Tomlin – Woodbine, NJ
Summer at Old Faithful Inn 1904

Carol Tomlin - Summer at Old Faithful Inn 1904

About the Artist:
“In 2003 I began stumbling while scouting for deer hunting areas with my husband Clarence. I was soon diagnosed with MS. Hands now shaky, I can no longer enjoy painting and even had to leave my job. With time on my hands I continued to exercise by working the family farm.

Determined to paint again, I had a cabin constructed on the place where my husband and I loved to sit together and watch the wild game in the back yard. There I found the peace I needed to steady my hand and paint again.”
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MS and Loneliness

“If you see me out or even in pictures, there’s usually a great big smile on my face.  To say that I suffer from loneliness doesn’t seem to make sense.  There are so many times though, where I sit and think to myself that I’m alone, that no one really understands me.”

This was just one of the many powerful quotations our contributor, Devin, recently wrote in his article The Loneliness of MS.

Even if well-meaning people say they understand how multiple sclerosis is impacting your life, it’s unlikely they do. And after reading this article, our community shared an outpouring of comments expressing their similar experiences.

Below are some of the thoughts our community shared:

I can’t get out and do things with others.

  • “The part I find most difficult isn’t actually being alone but the lonely feeling you get because you can’t do the things you once did with family and friends.”
  • “Fatigue alienates me more from friends than my obvious disability. Once you say no once or twice, invitations stop coming.”
  • “I feel especially lonely talking about events. I have an event in November. My thoughts are consumed with if I’ll be up to it.”
  • “Lost a lot of friends because of MS related issues, and I cannot go out and see those I do have often because of MS issues”
  • “My friends are into a lot of summer events, but there are so many unknowns…I don’t know how hot and sunny it will be, I don’t know if there will be enough chairs for everyone…will there be easily accessible toilets…I really don’t want to ruin anyone’s day. So better stay home.”

I feel different from everyone—sometimes even those with MS!

  • “People just don’t get it. I don’t feel ‘normal’ and it can get really lonely.
  • “A friend introduced me to a friend of hers who was dx 20 years ago, so she can give me advice when I had just been diagnosed. I realized how we were not at all in the same place. It was nice to know she was out there, but I still felt alone in my experience.”
  • “I suppose that’s why support groups are usually divided in at least 2 separate groups: DX less than 2 years ago, and all the others. I think either group could really overwhelm, and possibly upset, the other group.”
  • “I feel very lonely. Even though I am not physically alone, I am still alone.”
  • “My family tries so hard, but every time they accommodate me, I just feel different, and I feel alone.”

It’s not all loneliness, though: some of you offered solutions for easing those feelings:

  • “I have made the choice to look at my MS disability changes in my life that everyone I know is going to face the same challenges as we all age, I am just ahead of the curve.”
  • “Having a dog does help some. For me any way.”
  • “Online communities make a huge difference. It’s not a perfect solution, but I often feel closer to my online friends than my other friends”

While it does not fix this impactful issue, many in our community took solace in the fact that they were not alone in feeling alone. Sharing your feelings and experiences with others online can be helpful. How about you?


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!


(Last Minute) Summer Fun

As we continue to pass through the summer months and find ourselves looking towards a change of season (hopefully soon!), there’s still some time for fun to be had during the remainder of the summer. At times it can be difficult to try to make plans or schedule activities if the uninvited MS decides to rear its head and join in. But there are some last minute ways to try and enjoy the rest of the season, without having to make elaborate plans that MS will try to outdo.

There are times when heat-excessive summer days call for indoor activities, so why not have a game day/night? Getting back to a time where playing board games and cards was all the rage can be fun and nostalgic, and a good way to find some last minute amusement with friends or family. And keeping with the indoor theme, how about a movie night? Gathering together to watch a good flick, even if coordinated last minute, can be relaxing and entertaining. Orchestrating a last minute trip to the movies or visiting a museum or aquarium can also be some fun activities that may not require excessive planning but an opportunity to enjoy events of the season.

Check with community offices and message boards in your area to find some local events being held during the rest of the summer. Concerts, festivals, shows and exhibitions are just some of the local activities your community may offer that you can take advantage of last minute. Sometimes trying to take part in an activity that’s more spur of the moment and last minute can work to your benefit, especially if it catches MS off guard and doesn’t give it the opportunity to invite itself!


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!