Home and Lifestyle Modifications – New Edition of The Motivator

Posted on November 13, 2017 by MSAA

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.

Thank You, Maybe

Posted on November 10, 2017 by MSAA

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.

Being Grateful: Validate the Hardship and Strive for the Bronze

Posted on November 8, 2017 by MSAA

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/

Talk About Something You’re Grateful for…

Posted on November 6, 2017 by Angel Blair

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.

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

Posted on November 3, 2017 by John MSAA

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

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

Meet the Board

Posted on November 1, 2017 by MSAA

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!

Getting a Spinal Tap When You Have MS

Posted on October 30, 2017 by MultipleSclerosis.net

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!

Advocacy and the MS Community

Posted on October 27, 2017 by MSAA

By Kyle Pinion

When one thinks about advocacy especially in this very heated political climate, there are certainly some tough connotations that have be dealt with, particularly in regards to the concept of lobbying. But in truth, the concept of advocacy does not have a political slant, and in the world of non-profits it is simply the act of representing the needs of people who do not have a voice within the halls of the US Capitol. MSAA, as a member of the broader MS Coalition, is proud to be an advocate for people with MS, and in turn an advocate for the greater disability and chronic disease community. Year in and year out, working with our partnering organizations within the MS Coalition, we sit down with members of Congress and their healthcare staffers to discuss issues of importance to the MS population. Some of these topics may include MS research funding, or enhancing the federal government’s commitment to understanding the true incidence and prevalence of MS within the United States, or matters related to easier access to durable medical equipment (DME). These are just broad examples, but they give you a sense of how wide-ranging some of these national efforts are.

But MSAA’s advocacy work doesn’t stop there. We also are actively engaged in issues at the state level. Utilizing local thought leaders, medical professionals, those living with the disease and other coalition partners, we advocate for the needs of the MS population in all fifty states where barriers and inequity may exist. For example, if an issue arises where an insurance provider may not allow for open access for all MS therapies, that is an area in which we would commonly take action. Another instance may be the availability of rehabilitative physical therapy for people with Primary-Progressive or Secondary-Progressive MS. if it impacts the MS community and can be addressed at the federal, state, or local level, MSAA is proud to take action and work with our partners to seek solutions for these issues with both elected and private entities.

In addition to our work “behind the scenes”, our organization also seeks to educate individuals living with MS and their family members about how to best advocate for themselves and the community they are a part of. Self-advocacy is one of the most powerful tools available to the MS patient, and it’s our goal to inform our clients about the strength of the individual voice when speaking on issues of importance. Your elected officials want to hear from you, and while they value my and my colleagues’ time when we visit their offices, the truth is you are their constituent and your experience as a constituent within the district they represent means even more. No matter what you’re able to do – be it an email, a phone call, or even the all-important in-person visit – that sort of self-advocacy not only benefits you, but it also allows you to represent all of the people with MS that cannot be in that room. And therein lies some really incredible power. In that way, your voice really can turn the tide.

Don’t be afraid to get started, and let us know how we can help. It’s what we’re here for.

*Kyle Pinion is the Director of Public Policy and Advocacy, as well as the Southeast Regional Director for the Multiple Sclerosis Association of America. Before coming to MSAA, Kyle was the Director of Public Policy and Advocacy for the National MS Society – Georgia Chapter where he acted as the chief lobbyist for the chapter in the Georgia State Legislature, and their staff representative with the US Congress.

Insurance Resources

Posted on October 25, 2017 by MSAA

Dealing with insurance of any kind can be a stressful experience for anyone if you aren’t familiar with the language and jargon used on the forms. Health insurance is no different – particularly when you are trying to make sure that the health insurance you have covers all of your health needs, including any regular therapies, durable medical equipment, specialist visits, and regular tests.

Navigating the world of health insurance can be daunting, but our Client Services team here at MSAA has a couple of resources that can help get you started on resolving your questions and issues:

Patient Advocate Foundation – The PAF provides case management for patients who are dealing with insurance, employment, or other legal issues related to their medical condition.
State Insurance Departments – This link will take you to a map of the United States with a link to each individual state’s insurance web page that can offer more information about the insurance laws and the insurance marketplaces available in your home state.
Life Happens – This non-profit provides information and resources to find life insurance, disability, and long-term care insurance policies/plans, and they can help you find a local agent to assist you with those plans.

You can also visit the main website for Medicare and Medicaid to find additional information about these two government-funded health insurance options.

This is just a short list of resources that you have at your disposal to help you work your way through your insurance questions. For more information about your particular question or issue, please feel free to reach out to our Client Services Specialists at (800) 532-7667, ext. 154 or at MSquestions@mymsaa.org.

Never Stop Asking Questions

Posted on October 23, 2017 by MSAA

By Penelope Conway

Making my way through the medical insurance nightmare has been a challenge since being diagnosed with multiple sclerosis. It wasn’t something I thought much about before MS came along. I never really got sick so health insurance and my own well-being just wasn’t a priority. Talk about a learning curve. I was thrown into things head first and then bounced around a few times before landing hard with a thud.

My life was suddenly filled with doctor appointments, medications, unpredictable symptoms and massive medical bills. I found myself in this new world of the chronically ill and I didn’t like it one bit. To be honest with you, it scared me more than anything I had ever been through.

I think the first year after I was diagnosed, I spent much of my days in a mind numbing fog. I became overwhelmed with the vast amounts of information I found online about MS and the high costs associated with it. The more questions I asked, the more questions I had.

I became more concerned with being able to afford my co-pays and medical insurance premiums than with the latest phone apps or music downloads. I found myself searching for insurance plans that made MRI’s and durable medical equipment more affordable. I researched Medicare, SSDI and early retirement. I looked for ways to afford home modifications and accessibility aids.

I discovered that no one can look out for me better than me.

When I was searching for a supplemental insurance plan that would cover all the things Medicare doesn’t, the monthly cost was too high for me to be able to afford. So, what did I do? I got online and through asking tons of questions came across a foundation that helps people with MS pay their monthly insurance premiums. That was something I would have never known about if I didn’t dig around for answers myself.

I found that asking questions is the best thing anyone can do for themselves.

When the cost of my pain medication went up, again I got online and found that my Medicare drug plan had an exception form that can be submitted to request a lower co-pay. I had my doctor help me fill it out, sent it in and the cost of that one medication went from $45 a month to $3. The insurance company won’t tell you about that option in bold print on their home page. It’s something you have to ask questions about and search for yourself to find.

Then there was the time a few years ago when my powerchair was damaged in a car accident. I was okay but my chair got banged up a bit. I discovered that my homeowners insurance covers things like that. I was able to get a new chair to replace the broken one. Who knew homeowners insurance (or renters insurance) worked that way? I sure didn’t. Another lesson learned by again asking lots and lots of questions.

I don’t think I will ever understand insurance or how they calculate the costs associated with their services, but through asking tons of questions and digging around for answers I have been able to ease much of the costs associated with MS and living with a disability.

You have to be your own advocate, do your own research and never stop asking questions! You may not be able to control the progression of your MS but that should never stop you from taking control of your own health care.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (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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