Tell Us You Have MS Without Telling Us You Have MS

Sometimes, explaining multiple sclerosis (MS) to people who are unfamiliar with the condition is frustrating. The clinical definition does not fully capture the reality.

Finding Solidarity (& Humor) with the MS Community

The trend “Tell us without telling us,” or “tell me without telling me” asks people to share how they match a set of criteria or are part of a group without explicitly stating it. This trend allows people to make pointed statements that play with stereotypes, define characteristics, and share inside jokes – that includes those living with multiple sclerosis.

When we recently asked community members on the MultipleSclerosis.net Facebook page: “Tell us you have MS without saying you have MS,” the responses were amazing. This prompt struck a chord. With more than 1,000 responses, the creativity of the community certainly presented itself!

You are all too familiar with falling and tripping

Falling is a way of life with MS. Your balance and spatial awareness become compromised. You can trip over the slightest thing or nothing at all!

  • “The walls keep jumping in front of me, and the floor has bumps in it.”
  • “Ghost holes … watch out for them. They show up unexpectedly outside and even in your kitchen. The hole was there when I tripped then … abracadabra… it’s gone, and my new seat is on the floor.”
  • “I do all my own stunts – my random gravity checks are dedicated to science, not just spasticity.”
  • “Oh look … air … let’s just trip over it.”

Brain fog is the norm

Living with MS causes your brain to feel muddled. You forget words. You say the wrong word in place of what you want. Dates, tasks, names, or passwords that you have known forever suddenly vanish from your memory.

  • “I’d say what I’m thinking if I knew what it was.”
  • “In my head, it sounded right, but when the words came out, they were backwards.”
  • “Wait, what was I answering?”
  • “Would anyone care for some of my ‘Word Salad?’”

Everyday tasks are completely draining

“Exhaustion” does not begin to cover the depth of fatigue MS brings to your life. Formerly simple tasks wear you out for hours, if not the entire day. You find yourself needing lots of rest.

  • “I don’t have the energy to get off the couch to go to bed.”
  • “‘Good morning. Time for a shower and enjoy this beautiful day.’ Exits shower. ‘I’ll just sit down for a few.’ Cue the snoring.”
  • “Some days, I’m too tired to chew my food.”
  • “I put fresh sheets on the bed, and now I need a nap.”

Heat makes you miserable

With MS, you run warm. You feel hot and sweaty when others are cold. Hot weather makes the symptoms worse. Trying to keep your body temperature comfortable requires much effort.

  • “The thermostat sits at 68, and I’m in shorts; the rest are bundled up.”
  • “I take a shower just to get really hot and sweaty even after a cold shower.”
  • “I’m hot. It’s hot in here. It isn’t? Oh well, I’m hot!”
  • “Cancel our plans. The temperature is over 73 degrees.”

The MS hug is real

Most people living with MS are familiar with the MS hug. It feels like a tight squeeze around your chest. It comes on out of nowhere and is extremely painful.

  • “Want a hug? No? Me neither, but I got one today anyway.”
  • “Feels as if someone is lifting me off the ground and squeezing my middle chest section.”
  • “I feel like I’m being ‘hugged’ by a boa constrictor.”
  • “There’s this hug I would gladly do without.”

You spend lots of time in the bathroom

The regular need for the toilet is part of your life with MS. You experience incontinence. Leaving home requires forethought and planning around your bathroom needs.

  • “I pee myself daily.”
  • “I can tell you where all the nearest restrooms are within seconds of entering a building.”
  • “Excuse me, I need to go to the bathro …Oops. Nevermind. I’m just going to go change.”
  • Where is the bathroom?

Your calendar is filled with MRI appointments

Living with MS means frequent MRIs to monitor lesions. Comfortable or uncomfortable, the tube becomes familiar. Your image results look dramatic.

  • “My brain lights up like a Christmas tree on an MRI.”
  • “Looking at my MRI images is like looking out of a plane window when flying over a city at night.”
  • So, I had an MRI last week …”

Thank you!

While all of this is a comical and light approach to what life with multiple sclerosis can entail, we know there is so much more. We’d like to thank those with MS for sharing wonderful insights into life with a chronic condition. We appreciate the honesty and such willingness to share.

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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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Mentally Preparing for the Holidays

With the holiday season quickly approaching, you may find yourself spending a bit of time mentally preparing for the holidays. For a variety of reasons, holiday traditions such as family reunions, gift giving, and increased workload impact many of us. As you prepare for the holidays, I’d like to share some tips taken from NAMI (National Alliance on Mental Illness).

Here are 10 tips to assist you with mentally preparing for the holidays.

·      Stick to normal routines as much as possible

·      Be sure to get enough sleep and rest

·      Take time for yourself, but don’t isolate yourself

·      Eat and drink in moderation and don’t drink alcohol if you are feeling down

·      Get exercise, even if it’s only taking a short walk

·      Make a to-do list and keep things simple

·      Set reasonable expectations and goals for holiday activities such as shopping, cooking, entertaining, attending parties or sending holiday cards

·      Set a financial budget for holiday activities

·      Listen to music

·      Remember that holiday blues are short-term, so be patient and take things week by week and day by day

These 10 tips to help you mentally prepare for the holidays are both practical and doable. Implementing these tips can help you avoid feeling overwhelmed and enjoy the holidays with your friends and family.

Mentally Preparing for the Holidays
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Lemon Garlic Broccoli

With Thanksgiving right around the corner, I wanted to share a side dish that I love. 

The lemon and garlic combination are such delicious flavors. This dish is vegan and only take a few ingredients to make.   

Ingredients

  • 1 medium bunch of broccoli
  • 2 cloves garlic, chopped or crushed
  • juice of 1 lemon
  • salt and pepper to taste

Instructions

  1. Preheat oven to 400 F.
  2. Divide broccoli into individual florets, keeping stems on if you would like. Rinse under cold water and drain well. Once drained place in a medium bowl.
  3. Combine broccoli florets, garlic, lemon juice and salt and pepper.
  4. Place on a baking sheet and bake for 30 minutes until fork tender.

Wishing you all a wonderful Thanksgiving.

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Simplifying the Holidays

It’s hard to believe, but the holiday season is upon us once again. We’ve entered November and have already had some cooler temps across the country these days, helping to signify that special time of year. The holidays mean something different to everyone. And for some it means a period of stress and tension trying to plan and prepare for the festivities to come. But the holidays don’t have to encompass just tension and hard work. We can make things a little easier with some planning and prep ahead of time.

Make Lists

I am a huge proponent of making lists. They help keep us organized and help us to recall things that need to be done. Having lists written out gives you a better idea of what your tasks are and allows you to put things in order of priority. It’s also a great feeling being able to throw the list away once you’re done with it.

Keep it Simple

Sometimes less is more. During the holidays there’s already a lot going on, so why not simplify things where you can. Cooking for the holiday? Maybe focus on less side dishes or the abundance of dessert varieties. If gathering with others, go potluck for the meal. Have others prepare their favorite dish to bring to the occasion. And maybe even swap recipes with one another to make it more fun. If you’re able to, why not have a holiday meal or party catered? Or perhaps order your favorite takeout and gather with friends and family. Keeping it simple helps free up time to do other things you enjoy during the season.

Ask for Help

There is absolutely nothing wrong with asking for help, and at the holidays is no exception. Asking others to help plan and prepare meals, purchase goods, or clean and organize, can help you conserve energy and helps to maintain sanity during what can be a hectic time of year. Others may be very willing and eager to help, especially if they don’t have their own share of endless tasks to conquer. You can also pick and choose who you ask for support. You don’t have to take on everything alone.

This time of year can be truly wonderful and magical. It doesn’t have to look a certain way or cost lots of money. It’s about enjoying the spirit of the season, the joy, the lights, the hope. Be sure to carve out time to appreciate the special moments of the season. Nothing is or must be perfect. It can just be whatever it means to you.

Wishing everyone a safe and joyous holiday season!

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Giovanni Arroyo – November 2021 Artist of the Month

Each year, we feature the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase. We receive many wonderful submissions from across the country and are delighted to share the work of these artists and their inspirational stories with you, including highlighting one artist each month as our Artist of the Month. This month, we are proud to feature artist Giovanni Arroyo of Lake in the Hills, IL:

Giovanni Arroyo artwork entitled Long Night in Madrid
“Long Night in Madrid”

About the Artist – Giovanni Arroyo

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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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