MSAA’s 2017 Improving Lives Benefit

The folks here at MSAA are getting ready for this year’s Improving Lives Benefit, where supporters from across the country join us for the night to celebrate the accomplishments of MSAA champions in the MS community.

This year, our honorees are:

  • Shana Stern (MSAA Art Showcase Artist) – Diagnosed with MS in 1999, Shana has adapted her style of painting and creating art, as new symptoms and challenges presented themselves.  She has been an active participant in our Art Showcase since 2013.
  • Walker Reynolds (Swim for MS Volunteer) – Inspired by his mother Shana Stern’s determination and creative spirit, Walker wanted to give back to the MS community and did so by raising more than $1,800 for MSAA as a Swim for MS Volunteer participant.
  • William Saunders (MSAA Board of Directors’ Treasurer & Founder of Meeteetse Advisors) – Having served as the MSAA Board of Directors’ Treasurer for 8 years, William has been instrumental in helping the organization improve more lives in the MS community by supporting MSAA’s mission.

MSAA’s Improving Lives Benefit will be held on Thursday, March 30, 2017 in Philadelphia, PA at The Downtown Club.  If you are interested in attending, learn more at support.mymsaa.org/benefit.

While not everyone is able to make it to Philadelphia to help us honor these MSAA champions, anyone can participate in our national online auction.  Information on auction packages, which include a variety of starting bids, is available here.

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President’s Day at MSAA

Please note that MSAA’s offices will be closed on Monday, February 20, 2017 in observance of President’s Day.

The offices will reopen on Tuesday, February 21, 2017 at 8:30 am.

 

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Invisible MS Symptoms and How They Affect Relationships – Even When They’re Subtle

By Stacie Prada

Being diagnosed with and living with a chronic incurable condition can test and change every relationship a person holds dear. Invisible symptoms are especially tricky. I know after my Multiple Sclerosis diagnosis I didn’t want to burden others with my problems. Just because I had a life altering condition, I didn’t think it should affect everyone else.

One of the adult life lessons I’ve learned is that people who care about us WANT to help. Withholding our struggles increases stress on our part and creates a feeling of being pushed away on theirs. They hate feeling helpless. We do too, but we have more information at any point than they do.  Think about when you’re driving a car in inclement weather compared to when someone else is driving and you’re in the passenger seat.  When you’re driving, you know whether you have control of the vehicle or not. You know how well the brakes work, how alert you are, and how long it will take you to stop if something happens. A passenger has little information other than what they see and feel, and they have to rely on their trust in you. Having MS is like being the driver, and our friends are the passengers when it involves our health.

While their intentions to try to fix our problems, make us feel better, or help in any way they can may sometimes feel pushy and cause conflict, working through the unknown and developing a new relationship dynamic is well worth the effort. All of the relationships I still have today are intensely richer for the awkward conversations we’ve stuck with and the commitment we’ve made to interacting differently than we did before I was diagnosed.

Invisible symptoms like fatigue, pain, numbness, balance problems, bladder and bowel problems, cognitive issues and heat sensitivity can affect how we feel even when we think we’ve got it all under control. There are times when I think I’m doing fine or faking it well, and dear friends will say they notice I’m not feeling well. It’s especially impressive how well people know us when symptoms are subtle and we may not even realize we don’t feel as well as usual. For me I notice that my patience lessens and I have a tendency to feel more pressure from people by what they say.

I asked two dear friends what they had to say on this topic, and one said that what hurts her feelings is when I hold back and distance myself. I can justify it by saying I don’t want to worry her or bother her, but it’s more likely that I don’t feel like admitting I’m having an issue or that I’m not up for hearing advice in that moment. One skill I’ve tried to beef up is to recognize when I’m feeling pressure or don’t want to talk about something anymore and say so. I’ve noticed it’s harder to do this the longer I wait to say something, And while saying I’m not up for discussing something in that moment may hurt their feelings, I think it’s better than continuing to suffer silently. The other skill I’m working on is to tell them that while I’m not up for it in that moment that I do appreciate their concern and perspective. I also want to start saying that I think I can continue the conversation another time.

Being self-aware, communicating consciously and not reactively, and considering other people’s perspectives has made living and loving well with MS possible for me. It’s definitely improved my relationships, reduced my stress level and contributed to a life I love.

*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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Vanilla Wafer Banana Pudding

When I was a little girl, my mom use to make this simple and easy dessert for me and I can still close my eyes and envision what it looked like in the mason jars on the refrigerator shelf.  The great thing about this recipe is that it is no bake. You simply whip together a few ingredients and let them chill in the fridge until you are ready to eat. Be sure to cover it when in refrigerator to avoid the wafers from getting soggy.  Here’s my recipe.

Ingredients

  • 1 large package of instant vanilla pudding
  • 2 1/2 cups of milk
  • 1 can of sweetened condensed milk, 14 oz
  • 1 container of cool whip, 16 oz
  • 4 bananas cut into pieces
  • Vanilla Wafers

Instructions

In a large mixing bowl, mix milk and instant pudding mix. Add condensed milk and blend well. Fold in half of the cool whip and alternate pudding, bananas, and vanilla wafers.  Serve in a large pie plate or individual containers.  Top with remaining cool whip and add bananas and vanilla wafers on top.

Refrigerate for 1 hour before serving.

“We hope you enjoy our Recipe of the Month selections on MS Conversations. Just remember: these entries may not necessarily be a part of an MS-specific diet; these are simply recipes compiled from MSAA staff either from their own family recipe collection or based on recipes we think our audience would enjoy. As always, make sure to consult your doctor about any food or nutrition questions as they relate to your MS.”

 

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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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I’ll Be There for You…

Relationships are pretty often thought of strictly in the context of romantic attachments. Especially this time of year as we emphasize love and romance, couples, and all that comes along with it. But there are other relationships we sometimes forget to emphasize. Friends, family, co-workers, support group members, or neighbors. All of these, too, are relationships. It’s difficult in a world where things move a mile a minute and there is so much vying for our attention to remember to think of these other relationships and place some emphasis on them as well. Not just when the stores turn to red and pink and the costs of flowers rise to somewhat ridiculous levels.

While romantic relationships are important and make up a good portion of our understanding of relationships, support and encouragement for many often comes from those they are not romantically linked to. Friends who are there for us when we need a shoulder to cry on or a hand up when we are weak. Support group members who share their own story and listen to ours as we all try to live our lives as best we can and make the most out of all we have. Neighbors or co-workers who help us pass the time during work or who we bond with over community concerns and celebrations. These relationships, just as important as romantic ones, help shape both who we are as well as those around us and are strong bonds during trying and uncertain times. This month in addition to celebrating and relishing any romantic relationship we may be in and acknowledging the importance of this in our lives, let us take some time to also thank and celebrate the other relationships in our lives with people we love… just not in that way. Remind your friends and family what they mean to you or show appreciation and gratitude to your co-workers or support group members. It may not be the stuff of Hallmark movies but I’m sure they’ll really appreciate it that you took the time.

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MS, Do you mind?

When talking about MS symptoms, many know how different and varied these can be with the disease – from the different types that can occur to their various degrees of severity, what affects one person can be very different to another. The symptoms that MS causes can not only have impact on the person experiencing them, but on those around them as well. Certain symptoms can impact relationships and unfortunately, once again, MS acts as if it has complete control over all facets of one’s life, but this is not the case. Not when individuals can do things and make choices to manage these symptoms and work hard to combat them as much as possible. It’s not easy or always a possibility, but MS has to know that it’s getting a fight from the other side and the disease is not always going to be victorious.

One of the MS symptoms that can have direct impact on relationships is issues with sexual dysfunction. This is usually a less talked about symptom and one that many shy away from discussing or disclosing. But it is one that deserves attention and awareness, because many can experience it and it’s important to know they’re not alone in this. It’s bad enough that MS causes symptoms that can impact daily routines, schedule, work habits and other factors, but really—does it also have to come between individuals sexually, in their most private moments and encounters? Come on MS, do you mind?

For those who have experienced these symptoms, one key element to battling MS in this scenario is communication. Again, we know this can be uncomfortable to disclose and openly talk about, but if these symptom issues go unaddressed, the persons involved in the relationship may not know or understand what’s going on, and if not given a chance to learn or be aware of it, it’s hard to move forward and manage with it together. Talking about it with a doctor or counselor can help to create a safe atmosphere to openly discuss what’s going on and brainstorm strategies and ways to help manage it. There can be other ways to help improve intimacy and interaction between each other, but it starts with recognizing the issues that are at play and what’s influencing them, because different factors in MS can attribute to these sexual dysfunction symptoms.

Again, MS may think it dictates everything that occurs in one’s everyday life, but there are some things that it really has no business being a part of…

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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.””
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