About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

An ABC Mantra: Always Be Curious

By Stacie Prada

Multiple sclerosis affects brains and spinal cords, and damage affects sensations, movement and cognition. Each person experiences MS uniquely, and what helps one person might not help the next. The right treatments, medications, diet, coping skills, life changes, fitness regimens and lifestyles are different for each person. They also change throughout a person’s life. What works well for one person at diagnosis might not work for the same person years later.

The same is true for every person with or without a chronic illness. One size doesn’t fit all. Yet, I feel strongly that everyone can benefit from approaching ourselves, each other and the world with curiosity.

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MS Highlights – Then and Now

By Debbie Petrina

When my own MS began in 1980, there were only two organizations in the U.S. that supported multiple sclerosis – NMSS and MSAA. Although information and programs were quite scant at the time, development and availability began accelerating during the 1980’s.

There were no personal computers/internet, cell phones, or social media. My first MS peer connection in 1984 was arranged confidentially between myself and another member of the NMSS as a courtesy. Soon after, a team of MS patients began confidential, telephone-peer-counselor training sponsored by the NMSS. I was one of them.

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Ask the Expert – Mental and Emotional Health

Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer

Question: As we enter into the New Year, what strategies do you recommend for positive mental and emotional health?

Answer: Of all the questions I’ve been asked over the past couple of years this is probably the most difficult to answer… and to answer briefly. For some people, positive mental and emotional health comes more easily and naturally. It doesn’t require a strategy or a lot of work. Perhaps it’s the good luck of genetics or a positive and nurturing upbringing. But clearly for some people, happiness is more difficult and requires more work. For the latter and probably much larger group, it does require more work, and more effort, and maybe a strategy. It’s clear to me that the effort is worth undertaking!

There is “no one size fits all” answer. Each person will need to seek one’s own best path to mental and emotional wellbeing. For people with MS, that path should include a focus on physical as well as mental wellness. On the physical side, wellness should include regular exercise, a healthy but not a punitive diet, avoidance of tobacco, and a regular sleep pattern. On the social and emotional side, it should include a maintenance of your human connections, whether that be with your family or your friends or your religious community or your general community. It’s important to establish what is meaningful for you and purposeful for you! Maintaining meaning and purpose in your life is essential.

For people with and without multiple sclerosis, maintenance of good general health is important. People with MS do much better if the other aspects of their health are attended to, including blood pressure, cardiovascular health, and individual issues such as control of blood sugars for people with diabetes.

However, for many people, emotional wellbeing or happiness requires a more direct intervention. Depression and anxiety are particularly common in people with MS. Psychologists, psychiatrists, and counselors can be helpful in treating depression and anxiety, both pharmacologically and non-pharmacologically.  

Achieving better mental and emotional heath is an important and realistic goal.

To our MS family and community, I wish you a happy and healthy New Year!

Barry A. Hendin, MD, is a neurologist and Director of the Multiple Sclerosis Center of Arizona. He is also Director of the Multiple Sclerosis Clinic at Banner University Medical Center and Clinical Professor of Neurology at the University of Arizona Medical School.

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A Slew of Hope

By Doug Ankerman

Having hope is what keeps us going. Hope drives us. Hope motivates. Hope encompasses everything we live for — even the silly things, like these…

Hope I can wear these sweatpants another day.

Hope I can sleep tonight.

Hope I can make it to the bathroom.

Hope the tile floor isn’t wet.

Hope I don’t have to walk through the grass.

Hope it’s not too hot.

Hope it’s not too cold.

Hope no change on my MRI.

Hope I can remember your name.

Hope they have a fork.

Hope I can just “splash-n-spritz” and not take a shower.

Hope my shoes are handy.

Hope I can stay awake at the movie.

Hope they have close parking.

Hope there is shade.

Hope there’s a place to sit.

Hope this post doesn’t go on much longer.

Hope I still have another prescription refill.

Hope my pill-case isn’t lying (This IS Wednesday, right?).

Hope these socks match.

Hope the car has enough gas.

Hope I can open this ketchup packet.

Whoops. Hope Tide-To-Go works on this.

Hope no one sees me dressed like this.

Hope I don’t have to go upstairs again.

Hope my appointment is in the morning.

Hope this isn’t fattening (Who am I kidding).

Hope this isn’t another robocall.

I can’t read this — hope I can find my cheaters.

Hope this ends before I nod-zzzzzzzzzzzz

Hope YOU have a tremendous 2022!

Doug writes goofy things about MS and other stuff on his humor blog at myoddsock.com.

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Thankfulness and Kindness

By Gina Ross Murdoch

In years past, we would enter November with thoughts about upcoming family gatherings, parties, crowded shopping malls, and many other group activities. This year, we continue to view these activities with uncertainty and cautiousness for our safety. We are somewhat there in many areas but still not fully “back to normal.” The holiday season looks different but this time of togetherness, family, and helping others is as strong as ever.

So, what does the “season of giving” and thankfulness look like in our world today? It looks like gifts of kindness, large and small, as it has always been. It looks like neighbors helping neighbors and, hopefully, being kind to yourself as well. In our quickly changing and virtual world, the power of personal connections and family are more important now than ever.

A small act of kindness such as taking someone to a holiday lunch may now change to dropping off a special goody to someone who cannot go to that favorite restaurant. Kindness may be in the form of using your newfound crafty talent to make a personal gift and sending a surprise through the mail. It may also translate to giving yourself the small kindness of patience and understanding as we continue to navigate the current climate. Whatever your kindness may be, sharing of yourself and your talents will inevitably result in a thankful recipient. We all can make a difference, and all have the ability to make someone’s today just a little bit brighter. Even if we are still living in a somewhat socially distant world, connection to others remains essential.

Expressions of kindness continue to be seen through supportive groups that are important to you, such as the Multiple Sclerosis Association of America and the entire MS community. What may be a small act of kindness in your eyes can be a life-changing event in someone else’s existence. We often receive heartwarming notes of appreciation from those who have received a cooling vest or walker, explaining that these free services from MSAA have vastly impacted their lives. A walker may be the one thing needed to help a parent escort their daughter down the aisle, or a cooling vest could make the difference in allowing a grandparent to see their grandchild play baseball. These are just a few examples of how the power of generosity can improve a single life.

Throughout these challenging times, MSAA is thankful that we have maintained our Cooling, Equipment, and MRI programs as well as provided a wide variety of educational programs about COVID-19 and MS, the importance of mental and emotional wellness, and have continued to raise awareness about how MS impacts communities of color. Each day, MSAA receives many requests for support and information. Addressing those needs and being there for everyone impacted by MS is why we exist. MSAA appreciates the incredible support we have received in the past and we continue to rely on that support to be there for the MS community in the future.

Your acts of kindness create a significant impact. We rely on each other for support and compassion, as well as guidance, laughter, hope, and help. MSAA is thankful for the many people who continue to provide for our mission – you are critically important to Improving Lives Today. Wishing you a wonderful holiday!

Give Thanks

Image of lantern surrounded by gourds.

*Gina Ross Murdoch is a seasoned executive in non-profit management and has served as MSAA’s President and CEO since 2016. Her career includes leadership positions with chapters of the Leukemia and Lymphoma Society as well as the American Diabetes Association. Earlier, she spent 14 years overseeing development activities at a large chapter of the National Multiple Sclerosis Society, leading explosive growth initiatives and ground-breaking strategic projects. You can contact her at president@mymsaa.org to share your thoughts on how MSAA is improving lives today, or to learn how to get involved in our mission.

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Intentional and Collaborative Planning

By Stacie Prada

It’s typical to ask “What do you want to do today?” I’ve had richer conversations and better success asking, “What are your goals for the day? What would make today successful for you?”

It helps shift the conversation from specific decisions to a discussion about attributes that matter to each person. It might feel a little goofy or too structured, but I promise it contributes to relationships of respect and understanding with people who mean well and care. 

During the holiday season, it’s even more worthwhile to be clear about what matters to each of us. Holidays bring out heightened emotions and expectations for how to celebrate. Keeping traditions and doing what we’ve always done isn’t always possible or wise anymore. Whatever the reason, it’s worth introspection and discussion to adapt.

Collaborative Planning

What are your goals for the day, the weekend, the month or the holiday season? 

I try to ask these questions of myself and those I’ll spend time with.  When I know what I need to get done, what I want to do and what the minimum is that I hope to do, I can be realistic about what will meet my needs.

When I share my answer with others, they help me make it happen. When they share with me what they’d like, I factor their needs and preferences into plans. Usually our desires are compatible, and meeting everyone’s needs is doable. When we’re on the same team and plan collaboratively, we often come up with better and more fulfilling plans than if we’d left decision-making to one person.

Everyone has different desires, and each decision has different implications. A solution to one barrier might create other problems or eliminate something important to someone else. 

What’s important? What’s the essence of what would make it successful?

Knowing this helps shape decision making. We can collaborate on plans and understand what we’re trying to accomplish for each person involved.

If you don’t know what you want, you’re unlikely to get it or know you got it. If you don’t share what you want, you’re leaving everyone guessing and unlikely to make decisions that will meet your needs.

I have a friend who shared they get frustrated when they plan holidays and vacations with everyone in mind, but no one asks what they want. They understandably feel unappreciated. It’s not easy advocating for our needs, and often friends and family forget to ask. Proactively asking everyone what they want or need allows everyone to share in the conversation and decision-making. It also helps make decisions when things don’t go as planned. Everyone can contribute to problem-solving, because they know in advance what attributes are important to each person.

There are some who might not cooperate. Anyone sabotaging plans or dismissing another’s needs must be dealt with or avoided. If that’s an issue, find an ally who can reinforce or champion your wishes along with those of the rest of the people in the group. If that’s not possible, one-on-one counseling may be needed to navigate the specific situation or relationship.

In good relationships, sharing needs and limitations leads partners, family and friends to advocate for each other. Being self-aware, forthcoming and curious cultivates healthy bonds and boundaries. Being intentional with planning and collaborating with everyone involved is an opportunity to learn about each other, accommodate needs and appreciate our uniqueness.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. 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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Ask the Expert – COVID-19 and Flu Vaccines

Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer

Headshot of Barry A. Hendin, MD

Question: For individuals with MS who are taking a disease-modifying therapy (DMT) and plan to get both a COVID-19 vaccine as well as a seasonal flu vaccine, do they need to wait a certain amount of time between taking their DMT and between receiving each vaccine?

Answer: We recommend vaccination for COVID-19 and for flu for most people with MS after appropriate discussion with your doctor or primary care provider. The risk of COVID-19, as well as the risk of becoming sick from the flu, generally outweigh any risks associated with vaccination. We also recommend continued safety precautions including masking, handwashing, and avoidance of large indoor gatherings.

You can take the flu vaccine and COVID-19 vaccine on the same day. Trying to time your vaccination and disease-modifying therapy (DMT) relates primarily to the initiation of immunosuppressive DMTs. With some of these therapies, timing may be considered in order to optimize the effect of the vaccination.

For Gilenya® (fingolimod), Kesimpta® (ofatumumab), Lemtrada® (alemtuzumab), Mavenclad® (cladribine), Mayzent® (siponimod), Ocrevus™ (ocrelizumab), Ponvory (ponesimod), Rituxan® (rituximab), and Zeposia® (ozanimod), it’s generally recommended that vaccination be initiated two to four weeks before starting therapy, when possible. When Ocrevus and the experimental MS-therapy Rituxan have already been started, optimal vaccination response appears to occur when vaccination is given approximately four weeks before the next infusion. However, such timing may be difficult, and therefore in many instances, vaccination can be performed when available.

In addition, the COVID-19 vaccine and most flu vaccines are non-live vaccinations, and as noted above, these should be performed at least two to four weeks before starting immunosuppressive therapies if possible. While we generally do not recommend live vaccinations to individuals with MS if they can be avoided, live vaccinations should be performed at least four to six weeks before initiation of immunosuppressive therapies.

Barry A. Hendin, MD, is a neurologist and Director of the Multiple Sclerosis Center of Arizona. He is also Director of the Multiple Sclerosis Clinic at Banner University Medical Center and Clinical Professor of Neurology at the University of Arizona Medical School.

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Medicare Open Enrollment 2021

The medical expenses associated with MS can be costly, so finding an insurance plan that is appropriate for your healthcare needs is crucial. As such, MSAA would like to remind everyone of two important enrollment deadlines for 2022 health insurance coverage.

Medicare

Open enrollment for 2022 Medicare coverage ends on Tuesday, December 7th. To enroll or review your current Medicare coverage, visit Medicare.gov.

Health Insurance Marketplace

Open enrollment for private insurance through the Affordable Care Act’s Health Insurance Marketplace ends on Wednesday, December 15th. To enroll or review your current Health Insurance Marketplace coverage, visit HealthCare.gov.

You can also find information on both websites regarding medical coverage and COVID-19.

Coverage for both Medicare and Health Insurance Marketplace plans begins on January 1, 2022.

This is an important time, so please be sure to enroll in a health insurance plan that is right for you! If you have any questions, please feel free to call MSAA’s Helpline at (800) 532-7667, ext. 154 or email us at MSquestions@mymsaa.org.

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Blame the Disease, Not the Person

By Stacie Prada

Question: What was most and least helpful when you were first diagnosed?

Answer: The people. Collectively, they were the most helpful. Individually, some were the most and some were the least helpful.

Blame the disease, not the person

The people who listened, asked questions and validated my feelings helped me the most with my multiple sclerosis diagnosis. Answering sincere questions helped me analyze what was true at that time and what was fear for the future. Thinking through the issues and explaining my experience helped separate what I could influence from what I couldn’t. They offered suggestions while respecting my opinions and decisions. The paid support people who helped me immensely included my medical support team: primary care provider, counselor, neurologist, and physical therapist. The unpaid support team included family, friends, coworkers, online connections, and the local MS self-help group.

Those who told me what I needed to do or why I shouldn’t worry were naïve and ill-informed. They would prescribe treatments without knowing what caused my symptoms or what my symptoms even were. They’d tell me I’d be fine since someone they know who has MS is fine. They assured me I’d stay healthy to appease their own fears, not mine. They included people in all of the categories listed above who helped me immensely. A person’s profession or relation doesn’t automatically place them in the category of helping or hindering. How they behave and interact does.

The people who judged me harshly for how my health was impacting them caused the most stress, guilt and pain. I was criticized for being less attentive in my relationships and for letting MS be my focus. I believed it was a personal fault that I was burdening others. 

I genuinely thought I should be able to deal with my health privately and keep doing everything I’d been doing for others. I wanted to be strong and prevent the people in my life from being affected by my diagnosis and documented chronic illness. 

MS symptoms and exacerbations made me unable to meet the expectations I had for myself and others had for me. It helped me realize the expectations had always been unreasonable. I learned I’d never be able to be healthy physically and emotionally if I kept trying to meet unreasonable expectations.

I realized I can’t do this alone, and I shouldn’t. 

The people who validated that I needed to address my health and accepted things would change – they helped me the most.

The people who were angry, hurt, blamed and resented me for their unhappiness – they helped force me to realize I didn’t need to keep working toward the life I’d been building, and I probably couldn’t if I kept trying. In a painful way, they helped me open my future to more possibilities. Changing things wasn’t failure, it was survival.

Survival requires self-care. To people who are used to benefiting from an unhealthy relationship dynamic, other people practicing self-care feels like neglect. It’s good that terms are available now to describe manipulative behaviors. Consider (and look them up if unfamiliar) gaslighting, shaming, isolating, catastrophizing, guilt-tripping, silent treatment, insults disguised as jokes, and jealousy are just some of them. Hopefully discussions and education on unhealthy relationship tactics help people recognize them instead of feeling responsible for other people’s feelings and accusations.

It helped the most when I and the people in my life accepted my health as a fact of my life and worked together to make the most of my abilities and limitations. They watch out for me, help me reflect, know my health may inconvenience them at times and always make it clear they are on my team. 

We are united in our approach: Blame the disease, not the person. 

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  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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Introducing a Roadmap for the Newly Diagnosed

Receiving news of an MS diagnosis can be intimidating. Overwhelming feelings and questioning where and how to begin your journey is normal. To address this need, MSAA is proud to present Roadmap for the Newly Diagnosed, a series of educational fact sheets to direct new members of the MS community to the most sought information after an MS diagnosis.

Each fact sheet is designed to help support you as you start out on your MS journey, and includes topics such as:

  • Understanding your diagnosis
  • Accepting your diagnosis
  • Making an informed decision on sharing this diagnosis with others
  • Building a healthcare team
  • Various terms and phrases used frequently in the MS community
  • Additional resources for the newly diagnosed

Feeling unsure of which fact sheet to begin with? Alongside the fact sheets is a short, informational questionnaire that can help guide you to the fact sheets you may want to review first!

Roadmap for the Newly Diagnosed Fact Sheets

While an MS diagnosis can be disconcerting and anxiety-provoking, there are resources available to support you. View the Roadmap for the Newly Diagnosed fact sheets now on MSAA’s website.

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