An Ode to Mobility Aids

By Doug Ankerman

As one with multiple sclerosis for twenty-one years, I have much gratitude and thankfulness to share.

Certainly family comes to mind with their heartfelt devotion, care and attention to my round-the-clock stumbling.  My health practitioners earn a much deserved shout-out.  As do complete strangers willing to help load packages into my car, offering their place in long lines, to the deputy opening the cell door.

But this isn’t about them.

This message of gratitude honors the gaggle of mobility aids I depend upon each day.

First, my wheelchair.  My loyal steed.  Though reluctant to use the chair at first, it has become a savior of independence.  Taking me through sun, snow, rain and mud, my wheelchair has jostled my backside countless miles.  It has allowed me to see nature’s wonders.  Witness major events.  And traverse cavernous big-box stores.  Yes, independence would not be possible without my chair and for that I am grateful.

Next, my rollator.  The rollator sits in the garage mostly waiting for yard work to be done.  On those intrepid days, the rollator allows me to walk over uneven grass while keeping my weaving body upright.

Plus the rollator’s basket is perfect for carrying small gardening tools, gloves and chilled beverages on warm days.  (An MSer must keep hydrated, you know.)

Lastly, canes are my everything.  Always within arm’s reach.  Canes allow me to shuffle along without leaving messy fingerprints on the walls.  My canes help me stand.  Canes let me look someone in the eye.  And feel somewhat unburdened.  Although my gait is glacier-esque in speed, I have tried to create an illusion of fleet-footedness with the clever use of Nike swooshes added to their tips.

If you are curious, they didn’t help.  I am still sloth-slow.

My mobility aids have given me life post-diagnosis.  Hand controls, wheelchair, AFO, rollator, Dyna-splint, canes, grab bars, I feel like the Inspector Gadget of disability.  But it is all for a purpose.  A purpose of independence.  And for that I am grateful.

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Gratitude and Thankfulness

By Susan Russo

The holiday season is once again fast approaching. I honestly feel like I just finished boxing up all my decorations from last year. This is a time when everyone tells us to be thankful and to be grateful. But why are these sentiments so pressured into us at this time of year? Why not all year around? I don’t actually have an answer for you except for what these graces mean to me in my own life and why I choose to celebrate all year long.

I remember when I was diagnosed with multiple sclerosis. Was I grateful and thankful for this disease at the onset? Absolutely not! I was angry and frustrated and in a serious “why me” phase. But, as time seems to heal all wounds, over the following months, my heart softened and I started appreciating MS for what it is; a disease that can crush you or build you up. I chose the latter.  MS taught me a strong lesson about gratitude and being thankful, I promise you.

I am a single lady with no man to date as far as the eyes can see. My son is grown and my family lives out of state. So when Thanksgiving arrives, I tend to feel really sad and lonely. It’s a time for families to celebrate. And I’m reminded it’s just me.

I try to chalk it up as just another Thursday in a world of Thursday’s. But the season itself reminds me I am alone. Many people are alone. I get that. I can choose to wallow in self pity or I can choose to see what is all around me.

I have a home which did not flood during Hurricane Harvey. I have people who love me. I have a strong faith in Jesus. My son has grown up into an amazing man. (I raised him by myself; jus’ sayin’). I can still walk and when I can’t, I’ll buy myself a purple scooter. I’ve always wanted one anyway. And purple is my favorite color.

My point is this: being thankful and grateful are a choice. It’s not easy to be appreciative of life when all around us, our world is falling into pieces. But here’s the thing: choose to take a long hard look at all you have in your life. I am certain there is always something to be grateful for. If you feel stuck, begin a life of service to others. I did, and this one choice completely changed me for the better.

About a year ago, I became a member of the Pearland Citizens Police Academy Alumni Association. I volunteer to serve our officers and believe me, if anything will teach you to be thankful, it will be the police officers and their stories of courage and strength against all odds. These men and women leave their homes every day to keep us safe, not ever knowing if they will come home. But they do it anyway. This choice alone has made me eternally grateful for our men and women in blue.

Here’s the thing: becoming a police officer was never a choice for me, but serving them and my community are; MS was not a choice. But becoming healthier in mind and spirit was a decision I happily made. Being alone at the holidays is not my choice. But giving back to others is something I have grown to love. Not having a decent, God-fearing man to share my life with is not my choice. But believing God will one day answer my prayers, well, that truly is my choice.

And baking apple and pecan pie is not my choice either, but eating every single one in sight until I disappear into a sugar coma, well, now that’s a decision I never regret.

Until I stand on the scale…

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Candied Sweet Potatoes/Yams

This is a simple and quick way to enjoy a Thanksgiving classic! Canned yams or sweet potatoes may be used.  Bruce’s Brand of canned yams is easy to find this time of year at your local grocery store.  It is a crowd pleaser and easy to make.

Ingredients

  • 1 (29 ounce) can sweet potatoes or yams
  • 1/4 cup butter, cut into pieces
  • 1/2 cup brown sugar
  • 1 1/2 cups miniature marshmallows
  • Pinch of cinnamon
  • Pinch of salt

Directions

  1. Preheat oven to 400 degrees.
  2. Place sweet potatoes/yams in a medium baking dish. Place butter pieces evenly over the top of sweet potatoes/yams. Sprinkle with brown sugar, cinnamon and salt.
  3. Layer with miniature marshmallows.
  4. Bake in the preheated oven 30 minutes and marshmallows have melted.

 

Wishing you a wonderful Thanksgiving from my table to yours!

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Home and Lifestyle Modifications – New Edition of The Motivator

The Multiple Sclerosis Association of America is proud to introduce the latest edition of The Motivator, available now in both print and digital versions! This edition’s cover story, “Home and Lifestyle Modifications for Safety and Accessibility,” covers various strategies for better living at home – from strategically placed grab bars for safety, to building ramps and widening doorways for increased accessibility. Learn about easy DIY changes you can make, as well as tips on how to choose the right handyman to make any larger changes to your home.

Also included in this edition:

  • Organization updates from MSAA President and CEO, Gina Ross Murdoch
  • MSAA’s Chief Medical Consultant, Dr. Jack Burks, answers reader’s questions
  • MS research news updates, and much more!

Read an excerpt from our cover story here:


I remember skipping down the stairs and leaping over the baby gate at the bottom with my hands full of laundry. Then I’d run down another flight of steps to the basement to fill the washer before sprinting back up with the wet sheets. With one arm full of wet sheets and the other grasping my son, I’d jump down the back steps and hang the sheets on the clothesline. And that was all before breakfast.

I never dreamed that a few years later, I’d be stranded on my front landing, unable to get down the two steps without holding onto my husband. I certainly never imagined that I’d get stuck in my bathtub, unable to stand up without my husband to pull me out.

Over time, I found solutions to some of the obstacles I was experiencing. Some remedies were not difficult. For instance, I learned that showering was easier than taking a sit-down bath. When the time came that I needed to sit while bathing, I purchased a shower chair at a medical supply store. When the single railing on our inside staircase became too difficult for me to navigate, purchasing a second railing at a home-improvement store was a simple fix.


Continue reading the cover story at support.mymsaa.org/motivator to learn more about home and lifestyle modifications you can use to make your home more accessible.

 

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Thank You, Maybe

By Lauren Kovacs

I admit this is a tough emotion for many MS folks. I am not exactly the “glass is half full,” sparkles, and glitter type. Not sure how I survived as a college cheerleader. Many were bubbly, barf. I was more of the stick in the mud with a giant white bow.

Gratefulness has been a learned trait. I force myself to see the green grass and pretty unicorns. I often see giant animals pooping on my lawn with sharp pointy things on their heads. Many of us have to really try to be thankful. Come on! MS has taken a lot and it is not a generous disease.

Alas, finding thankfulness is hard, but we must try. I would fit in well with a Grinch family, however green is not my color. See, glass half empty!

I have to “cheer” myself on just to get to the bathroom in time.  Finding things to be grateful for takes on a new identity. If I manage to tie my shoe or put elastic in my hair on the first try, I celebrate it.

Small things deserve great thanks. MS folks adapt better than most. I am a lefty, yet I have learned to apply eyeliner with my right hand. I drove my figure skating instructor nuts because I spun like a lefty and jumped like a righty. In kindergarten, I cut paper right but, wrote left. Drove my teacher crazy enough to put me in some special ed. classes. Little did I know that one day this ambidextrous trait would come in handy. That is something to be very thankful for.  I still can’t write right handed, yet every other thing I can do with my right hand.

I learn to be thankful for much smaller things. Simple stuff does matter. Think about just getting through the day. Toilet paper, straws, walkers, naps and all that meaningless stuff is, in fact, deserving of our thanks.

I am thankful my boys can enjoy gluten. Stuffing at Thanksgiving would suck. I am grateful I have enough self-control to resist it. Talk about resisting temptation.

MS reveals how tiny stuff can induce great thanks. I am very thankful for anti-bacterial wipes. I can de-germ my walker and wheelchair wheels pretty easily. Think about where they go. When I did horseback riding therapy, those wheels went over horse poop.

Even though I have had to give up my jeans, being small enough to wear fun kid-size leggings is a trade off. Yes, I have lots of sneakers too, but less of an ankle injury risk than heels. I am truly thankful for that.

It may take some thought, but we can find stuff to be grateful for. It might seem simple to some. I get weird looks for being thankful for my piggy dog, but he cleans up all the food I drop on the floor. He is now on a diet though. Poor guy. He loves food.

I am thankful for having a life jacket. Drowning in my own pool was not on my bucket list. Small things to be grateful for shows humility. It can be fun, too.  I love that I can paint my own nails, if I use glitter polish. Covers the mess well.

When going around the table talking about what you are thankful for, think. Small things show that you have character. It might make someone else see how blessings come in all sizes. I personally, am grateful for whoever invented elastics for pants. Sweet tea is a close second. Electric toothbrushes are a lifesaver, too. No swamp mouth.

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Being Grateful: Validate the Hardship and Strive for the Bronze

By Stacie Prada

I used to think being positive meant focusing only on the good things in life.  I was really good at it too. A friend would say she’d had something bad happen, and I wouldn’t miss a beat to respond with how great it is that a worse outcome didn’t result.

I did it with myself too.  It seemed like if I let myself think about the difficult things, that it was being negative. That it could lead falling into a dark place of feeling bad and never climbing out.  I once had a counselor tell me after 9/11 that thinking about what happened doesn’t make you sad. What happened makes you sad.

In that way, thinking about having multiple sclerosis doesn’t make me sad. My chronic illness and progressing MS symptoms make me sad.  Ignoring them doesn’t change the fact that I have both. We’re not limited to feeling one emotion at a time, and feeling sadness or frustration with one aspect of life doesn’t preclude feeling optimistic.  I’d argue that we need to feel one to appreciate the other.

To feel genuine gratitude, I need to know it’s not mandatory to stuff my feelings and be happy every moment. I can’t ignore the tough parts of my life and only acknowledge the things that make me grateful. I can’t just write a list of unrelated things to be thankful for and stay sane. If I’m feeling sad or resentful, I need validation that it’s understandable to have those feelings. If I skip this step, I’m minimizing my frustration or implying I don’t have a reason to feel bad. Once I sit with it, grieve for it, and assure myself I’m not weak or overreacting, I can then choose to focus on things that make me grateful. Sometimes it’s a quick shift, other times it’s a rough climb out of funk. Either way, it helps me come to a place of genuine appreciation in my life.

I think about it as winning a bronze medal. There’s an article in Scientific American, Why Bronze Medalists Are Happier Than Silver Winners, that I think we can use in our own lives to be happier.  People who compete and miss winning first place exhibit less happiness than people who don’t perform as well but still make it to the podium. Silver winners focus on the one person who did better.  Bronze winners compare their performance to all the people that tried and didn’t win anything.

When I’m grateful, I’m recognizing my efforts and satisfaction. I’m not seeking perfection.  I’m looking at how amazing things already are.  I may acknowledge what could be better, but I’m recognizing all the ways it could be worse. Some people seem to have a point of pride of noticing the error or the flaw in things. They can make you feel like you’re never good enough. Try not to judge yourself harshly and add to feeling miserable.

How we perceive our situation makes all the difference. When living with a progressively disabling chronic illness, things will stink and be sad and frustrating and feel too big to deal with at times. Sometimes the best I can do is know that how I feel right now won’t last forever.

The measure of success changes depending on my health.  If I can participate in a race and come in last, I’m grateful that given my circumstances I can do it at all. If I feel bad, I know that’s a part of the condition and grateful for the abilities I still have.  If I’m experiencing a permanent loss, I acknowledge that it’s sad to experience the loss and grateful for the time before the loss.

Strive to have a mindset of someone who’s coming in third.  Or someone who’s in last place and may or may not finish. You’re still doing it.

*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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Talk About Something You’re Grateful for…

Gratitude is a beautiful concept. Feelings of appreciation can really fill the heart and help to create a more positive outlook on things. When I was in graduate school I had a counseling seminar course and one day my professor asked us to go around the room and talk about something we were grateful for. Now the idea of this was great, however, it happened to be a very difficult time period for me. I had just lost my grandmother and it was my first class coming back, so the exercise was not very appreciated in that moment. I think I said I was grateful I made it to class and that was it. It’s beyond challenging to try to think of things to be grateful for in dark moments, but since then I’ve tried to learn how to look at the things that are still immersed in the light. Gratitude does not always have to be an extravagant or grandiose notion in order to feel it, actually most of the time it’s felt in the simplest of moments. We just have to allow ourselves to embrace it.

A stranger holding a door open. Someone else making dinner. A note of thanks for something you did. Having a day off. It doesn’t matter the action or words but the feelings behind it. Being thankful for things, big and small, can help to improve well-being and attitude. They study gratitude in the research area of positive psychology nowadays and have found that it helps to increase happiness and optimism. Many individuals use gratitude journals each day/week to note specific things they’re thankful for, which can really help to change one’s perspective and views. The world can sometimes be a very dark place with very unfortunate moments, but if you choose to see the light that still lives just as strong as this darkness, that generates hope, and hope is what keeps us all moving forward.

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

MSAA is very proud to present our 2017-18 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.

Laura Patchen – Pittsford, NY
Hurd Orchards
Laura Patchen - Hurd Orchards

About the Artist:
“I have been diagnosed with MS since 1998, and stopped working because of it in 2005. I began painting around 2010, looking for something to do that would make me feel like I had accomplished something. I enjoy painting immensely. It gives me joy and reminds me of places I’ve visited.

One of the wonderful things about painting is that when I become tired, I can put it aside and go back to it another day when I have more energy. I know that eventually, I will finish what I’ve started – it just might take me a little bit longer than I’d like.”
Read more

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Meet the Board

MSAA strives to be a leading resource for the MS community by improving lives today through vital services and support – and we could not accomplish this without the help of our volunteer board members.  MSAA’s Board of Directors is comprised of accomplished professionals from across the country who volunteer their time to further MSAA’s mission.  With our new series, Meet the Board, we hope to introduce you to our wonderful volunteer board members!

MSAA is proud to highlight two volunteer board members this month – Jennifer L. Schwartz, Esq. and Barry Singer, MD!

Jennifer L. Schwartz
Chair of the Programs and Services Board Committee

Professional Background: Jennifer L. Schwartz, Esq. of Philadelphia is the Vice President of Legal Affairs & General Counsel for Lourdes Health System (LHS) and St. Francis Medical Center (SFMC). She was initially hired by LHS as its first in-house attorney, and after just three years as the Assistant Vice President, Legal Affairs, was elevated to LHS’ chief legal officer as a direct result of her foresight, strategy initiatives and legal expertise.

Barry Singer
Executive Committee Member, Chair of the Development Committee, and member of MSAA’s Healthcare Advisory Council

Professional Background: Barry Singer, MD of St. Louis is an expert MS neurologist and has been the Director of The MS Center for Innovations in Care at Missouri Baptist Medical Center since 2008. He is an Assistant Professor of Clinical Neurology at Washington University School of Medicine since 1999 and maintains privileges at Barnes-Jewish Hospital. He has been an investigator in greater than 25 multiple sclerosis trials (Phases I to III) focused on new therapeutic options. He continues to publish peer-reviewed articles, present posters and lecture globally on multiple sclerosis.


What inspired you to join MSAA’s Board of Directors?

Schwartz: “I had been looking for a non-profit Board to join and give back to the community when, coincidentally, a current MSAA Board member contacted me and asked if I would consider joining the MSAA Board. I was blown away because just a week earlier my Dad’s twin sister had passed away from complications associated with progressive MS. She was never able to benefit from medications and relied heavily on help from others – a specialty of MSAA. One of my best friends from college also has MS. I felt that it was meant to be and that by taking on a Board position and giving it my full dedication I would be honoring my Aunt and accomplishing my ultimate goal of giving back to others through the MS community.”

Singer: “For over 15 years, I have collaborated with the MSAA on important patient educational programs nationally. My goals align with the MSAA’s deep commitment to trying to help people living with multiple sclerosis receive the resources they need to live as well as possible. For example, MSAA funds MRI scans for patients that could not afford the test which has often led to important medical decisions. Joining the Board allows me to make a positive difference on the lives of those living with MS.”

What are your goals as an MSAA Board Member?

Schwartz: “I want to contribute new ideas to the future strategic goals of MSAA. I hope to be an excellent representative for MSAA and to assist the organization in enhancing its impact across the world. It is also my goal to motivate other people and organizations to contribute to MSAA. These are my obligations to the clients served MSAA and to the amazing and dedicated staff of MSAA.”

Singer: “As a multiple sclerosis specialist on the Board, I provide a unique voice due to my insight into the desires and needs of those living with MS. I have been able to advocate for programs that will have greatest impact. In addition, I frequently provide recommendations on the MSAA’s position on rapidly changing healthcare news. As a board member, I’ve been involved with the MSAA’s national and international leadership on communication between patients and their healthcare providers. As a Board Executive Committee member and head of the Development Committee, my goal is also to develop the relationships that ultimately fund these critical resources for those living with MS.”


Editor’s Note: MSAA is extremely proud and honored to enlist the support of Ms. Schwartz, Dr. Singer, and all of our dedicated Board Members who volunteer their time, expertise, compassion, and leadership to help us achieve our mission of improving lives today for the entire MS community. We are very grateful for their service and look forward to their continued support as we strive to serve more people in more places than ever before. Thank you once again Jennifer and Barry!

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Getting a Spinal Tap When You Have MS

Spinal taps, also called lumbar punctures, are important diagnostic tools, not only for MS, but for a multitude of neurological conditions. A spinal tap can help uncover valuable information about your nervous system. We at MultipleSclerosis.net recently posted an article by our very own Devin Garlit’s called “The Joy of getting a Spinal Tap,” in which Devin discusses his spinal tap experience during his MS diagnostic journey. It was a hit! So many of our community members responded and shared their spinal tap experiences as well so we’ve compiled some of those stories to share with you!

The Numbers

In the article, Devin describes his experience with his second spinal tap. Some people may escape the spinal tap altogether, while others may have multiple lumbar punctures throughout their lives. Many of you weighed in on the varying number of spinal taps you have endured.

“My first and hopefully final spinal tap was horrible…”
“I have had 4.”
“Had one and will never ever get another one!”
“I have had 3 and will never have another.”

The Test Itself

Some of our members described the process in terms of the test itself, and described it as fairly simple and easy. Understandably, others found it to be quite the opposite. Whether you felt your spinal tap was a walk in the park or complete misery, your experience will be unique to you. No matter how you fell about the test, your experiences are completely normal.

“Mine was a piece of cake!”
“I had a very good experience. The procedure was over in seconds and I had to lay completely still for the next hour. My wife drove me home and I spent most of the next 24 hours as vertical as possible, drinking plenty of water. I suffered no ill effects.”
“My spinal tap was the worst thing I’ve ever gone through.”
“I barely felt the needle!”
“Worst experience ever. I cried the entire time.”
“Mine was easy- peasy!”
“Worst experience of my life, hands down.”
“I was lucky. I never felt a thing. No headache either.”

The Headaches

One other interesting thing Devin shared with us about his experience was how important it can be to listen to your doctor, lay down, and avoid activity afterwards. Severe headaches after the test, often referred to as spinal headaches, can occur. The spinal headache he described was an experience so many of you shared. Some of our community members even had to have a blood patch to relieve spinal headaches afterwards.

“I was nauseated and hit with the most painful headache of my life…So my advice with spinal taps is to listen to the doctor and rest up afterwards.”
“I was told to lay as completely flat as possible the whole day. And the headaches were like a caffeine headache, so soda was kept handy.”
“I had my spinal tap on a Friday and had to live with the headache until Monday when they could do the blood patch.”
“I had a spinal headache after mine as well. I had to get a blood patch. Thankfully the patch relief was instant, but wow that is a pain you never forget.”
“I had massive headaches for days.”
“By the time I had my third lumbar puncture, I learned to demand the magic words of BLOOD PATCH immediately following the procedure.”
“My spinal tap resulted in an absolutely massive headache that I couldn’t even lift my head up (and I rested as I was in hospital). I later had to have a blood patch & the headache disappeared immediately thank goodness!”

How about you? What have your experiences been like? We’d love to hear your stories! Although spinal taps are not always a pleasant experience, they can be quite helpful when it comes to learning more about your MS. Sharing your tips and experiences on how to get through this exam can help provide relief for other members during their future tests!

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