Stories to Inspire

Since 2013, Shana Stern has actively participated in MSAA’s Art Showcase campaign, where people living with multiple sclerosis (MS) submit images of their talented artwork for display on our website gallery, promotional materials, and social media platforms. Shana’s bold and vibrant paintings reflect not just her artistry, but also her willingness to rise above the ongoing challenges of multiple sclerosis. Diagnosed with MS in 1999, Shana battles a variety of symptoms including extreme fatigue, pain, drop foot, and visual difficulties. In addition, Shana also has a loss of feeling in her right arm and fingers, which limits her ability to hold or grasp any small object – including a paint brush.

Frustrated by constantly dropping the brush and her inability to control the path of the paint, Shana was forced to once again work around the impact of MS and find a solution. While sitting on the floor, Shana discovered that she could balance the canvas on her knees and paint with her fingers and knuckles. By adapting to this new and unique style, Shana has regained control of her artistic abilities and found an even deeper connection to her love of painting. “Getting lost in the music I paint to and helping the colors dance across the canvas with my fingers has become my mental, spiritual, and emotional therapy,” said Shana. “We may get knocked down a bit and have to work a little harder, but we are capable of great things such as bringing beauty and art into the world! Yes, I have MS, but I am an artist.”

Not surprisingly, Shana’s son Walker Reynolds, 12, also shares a love for art and the ability to reach beyond the ordinary to accomplish the extraordinary. Inspired by his mother’s spirit and determination, Walker also wanted to get involved with MSAA and help make a difference. While on the MSAA website, Walker discovered our Swim for MS fundraising campaign, where volunteers can create their own swim activity, set a challenge goal, and collect pledges from family and friends to help support the organization’s programs and services.

As a self-described “fish,” Walker’s love of swimming and the ability to raise funds while having fun in the pool made for a perfect match. Despite being 11 years old at the time and having no prior fundraising experience, Walker dove right in and registered for Swim for MS. Starting in June 2016, Walker dedicated his summer to swimming one minute for each dollar donated, with the ambitious goal of raising $1,600. On his fundraising page, Walker stated: “My goal is to raise $1,600, which is $100 for each year my mom has struggled with MS. Daily she battles fatigue, numbness, pain and vision loss (which stinks when I need homework help!). Because her symptoms are ‘invisible’ I want to educate others and also inspire others like she inspires me!”

With Shana and Walker’s permission, MSAA began promoting their remarkable story to the local media and within the MSAA community. By summer’s end, with the support of their family, friends, and other contributors, Walker not only reached, but exceeded his goal and raised more than $1,800 to help support the MS community. As one can imagine, MSAA is extremely proud to recognize the amazing love and inspiration of Shana Stern and Walker Reynolds by honoring them at this year’s Improving Lives Benefit.

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Ask the Expert

Featuring Carrie Bruce, PhD, CCC-SLP
Sr Research Scientist, School of Interactive Computing
Georgia Institute of Technology
Member of MSAA’s Healthcare Advisory Council


Question:
Due to my MS, I have trouble speaking and writing at times. Is there anything out there to help me?

Answer: When communication skills are impacted by MS or related treatments, a person’s quality of life can be significantly impacted. Even minor changes in a person’s speech or written communication can make it difficult to function at work, stay in touch with family or friends, and manage conversations with people in the community. There are various strategies and products that can help with writing and speaking.  A quick check of catalog and online companies shows thousands of writing aids, keyboards, voice and speech aids, and other products for improving communication.  Several online resources offer unbiased listings of these types of assistive technology, including assistivetech.net and abledata.com. Additionally organizations such as ataporg.org operate lending libraries or equipment closets for these products. In most cases, these specialized products meet the particular need for which they were designed and make it easier for a person to communicate.

Another option is to leverage devices such as tablets and smartphones that have useful built-in features and the capability to run applications (apps) that make it easier to write, type, speak, listen, and read information. For a person who has a hard time writing, speech input can be used to compose emails or texts, dictate documents, make shopping or to-do lists, and search for information. Word prediction and completion can also be helpful in offering suggested words that a person can choose from instead of typing the whole word. If a person has difficulty speaking, email and text messaging can be alternatives to phone calls or face-to-face conversations. Some people also find it helpful to use Skype, Facetime, or other video/audio calling apps because the visual connection makes it possible for callers to see each other’s faces and share other viewable information (e.g., an object that is the topic of discussion). Additionally, tablets and smartphones are able to run apps that produce spoken messages based on what a person types or selects from pre-stored choices.

New features are constantly being developed for smartphones, tablets, and other devices that are potentially helpful in overcoming communication difficulties. Don’t worry about staying on top of the latest trends, just focus on finding a solution that works well for you. For more information and additional resources, please contact an MSAA Client Specialist at (800) 5320-7667, ext. 154.

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Loneliness, Being Alone, and MS

One of the MultipleSclerosis.net contributors, Cathy Chester, recently published an article about MS and the feelings of loneliness—and how they are different from just feeling alone.  Cathy’s words really resonated with our community members, and we received a lot of amazing feedback about how other people deal with feelings of loneliness and MS. Here’s what they had to say:

Enlisting the Support of Animal Companions

“My constant companions, my dogs, the best friends you could have. I am glad I have my dogs, they are far more loyal than any human being I’ve met in decades”

“I’m thinking of getting another dog. I had dogs all my life, I don’t have any dogs now, and I think they will be able to benefit me. Hopefully, this will add to curing my loneliness”

“I work, read, watch TV and spend time with my dog. He is almost 10 and he is the reason I fight for what I do have”

“The only thing that really helps is my dog. He’s older, so not as active. He gives me the strength to continue in this world. He makes the days better. I don’t go many places without him”

“I don’t mind being alone at home, in my own space with my cat”

So many of you talked about leaning on a furry companion when you’re feeling down.  Pets can provide many benefits when living with a chronic condition, so long as you consider the means required to take on a full-time furry friend!

Finding Hobbies that Soothe the Soul

“I keep my mind occupied with my hobbies. I love TV and movies. I love reading for hours and hours at a time”

“I can still see enough to read my kindle, I have TV, and although not a fan of daytime TV, I have lots of DVDs. It could be worse, I know. So you just keep plugging along as best as possible”

“I can relate, some days are rough, but I try to sew a little every morning, which was something I enjoyed when I was young”

“Playing games on my tablet keeps my mind occupied most of the time”

While not all of our favorite hobbies are possible all of the time, many of you reported finding new hobbies or amending old ones to fit your new lifestyle.  TV, puzzles, sewing, low-impact exercises like yoga or stretching, or even just watching funny YouTube videos can provide a distraction and pick-me-up when you need it the most.

Adjusting Your Outlook

“I truly believe that God expects me to do something that might help others cope. We did not have a support group, so I started one in my area and I am very active in our MS Walk each year”

“I do what my body allows me. I used to be very active, now I take my happiness from what I can do. I have a lot of naps now. I don’t stress over things, it’s no good for me”

“I still try to push myself to do everything I can as often as I can. I have found that a lot of times when I sit and plan out every step involved in going out, which we have to do within reason, I can become overwhelmed and staying home seems safer. However, if I take proper precautions and don’t overthink it, most of the time I end up feeling so much better that I went. It takes a lot of effort, but usually pays off”

While we can often feel like MS is an insurmountable journey, there are many of you who have shared small mental shifts that have led you to positive outcomes.  A full mindset revolution may not always be possible, or even beneficial all the time, but sometimes, slowly embracing change, even when everything seems bleak, could be a step in a new, and positive, direction.

No matter how you combat your loneliness, just remember, you are not alone.  Our community is always here for suggestions, or even just an ear to listen when you need. Please continue to share your experiences with MS-related loneliness with us, we love hearing from you!

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Symptoms that Effect Relationships – The Infestation of Fatigue

By Lauren Kovacs

Relationships can be with your spouse, sibling, friends, parents or any living thing really. Sadly, MS contaminates everyone and every thing. It is ever changing. There is usually one symptom that takes the cake.

For me, the winner is fatigue. I swear a cloud of sleepy juice stalks me. It lurks behind corners and lays on me like a wet blanket. It will mess with every relationship and can smother events.

I often have to skip functions because of fatigue. The way I deal with it does not always jive with a particular gathering. Routines with MS work well, but not every event works around your routine. MS is not always flexible. People are happy to let babies nap; however, full grown adults don’t seem to get that same level of understanding.

I take half my “awake” medicine in the morning, nap, and then take the other half. This usually helps, but caffeine gum and coffee are heavily leaned on too. Not the best options.

My spouse knows my routine. Most people very close to me know it. There are times when my routine can’t be followed. Boy Scouts, soccer games, and Taekwondo sometimes jump in the path of my routine. I bend MS, as much as I can, in those situations.

The biggest effect of this is guilt. I fight guilt over missing the Pinewood Derby because I had to be at Taekwondo in the morning. I have guilt because I had to miss a soccer game because I have to nap. My parents had to go instead. It is a ripple. Asking for help often rolls into guilt.

I have to rest and miss some things and rely on my spouse, parents, or whoever. I deal with this balancing act all the time. I try not to tip the scale. Guilt and pride are always battling.

The guilt of asking for help and the pride of doing it myself tip back and forth constantly. People get mad because you didn’t ask for help, but the guilt of being a burden is often worse.

We carry heavy and complex weights to the scale. You have to try and balance that scale.  Do the best you can. Others often do not see this part of MS. Getting those scales to balance can cause fatigue. Take a deep breath, do what you can, and have some chocolate.

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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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