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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Happy New Year

As this year comes to a rapid end, I’d like to leave you with something positive to help you get your 2022 off to a great start. As I thought about what I might share with you, I came across this acrostic that truly inspired me. My hope is that it will inspire you as well, and that you will have a Happy New Year.

Happy New Year by Catherine Pulsifer

H appiness depends upon your outlook on life – Find the good in all situations
A ttitude is just as important as ability – Keep your attitude positive
P assion, find yours this year! – Do what you love and you will never work
P ositive thoughts make everything easier – Stay focused and stay positive
Y ou are unique with special gifts, use them – Never forget you have talent

ew beginnings with a new year.
Enthusiasm, a true secret of success.
ishes, may they turn into goals.

ears go by too quickly, enjoy them – Wisdom from your elders, listen
nergy, may you have lots of it – Take care of yourself
A ppreciation of life, don’t take it for granted – Live each day
R elax, take the time to relax in this coming year – Keep a balance in your life

May your holidays be filled with joy and may you have a “Happy New Year.”

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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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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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Community Views: Sleeping Through an MRI

Living with multiple sclerosis (MS) means you are all too familiar with magnetic resonance imaging (MRI) tests. Some people dread getting an MRI, while others are not fazed by the procedure.

With more than 1,500 responses to the MultipleSclerosis.net Facebook prompt, “Do you ever fall asleep when getting your MRI?” there were folks in each camp! There were straight “yes” or “no” answers, while many of you shared why or how you could or could not sleep through an MRI.

Here we share some of your insightful comments!

Dealing with the noise

One thing about MRI machines is they are loud. Whirring, grinding, banging – there are many words to describe the sound. Some of you find the noise soothing. You go to sleep with the MRI functioning as white noise. Others find the noise too loud to tune out. It is jarring and keeps you awake throughout the entire procedure.

  • “Oh, yes. After 11 years’ worth of MRIs, the noise isn’t noise anymore.”
  • “I do. It’s like listening to the dryer.”
  • “Never! It’s too loud.”
  • “How can you? It sounds like you are in a plane cargo space.”

You fall fast asleep

For those of you who sleep, you sleep hard! A few community members said updates from the tech wake you. Some of you said that the tech has to intentionally wake you since your sleep rhythm disturbs the imaging.

  • “I’ve had the tech tell me to quit snoring because it blurs the image.”
  • “They end up having to redo part of it because I move when I am asleep.”
  • “I purposely sit up all night before my scheduled MRI so that I’ll be exhausted by the time I get there.”

MRIs serve as me time

Several of you mentioned enjoying MRIs as the time is all about you. Nothing is allowed in the room with you, which means the time is entirely your own.

  • “It relaxes me so much. That hour in time, no one to bug me, no phone ringing, it’s just me in the magnetic tube.”
  • “I have an MRI coming up, and as a mother of 2 kids, I’m excited about it!”
  • “It’s the best 45+ minutes of alone time in my busy, hectic life.”
  • “I LOVE my MRIs. It’s the only time I am completely unavailable to do anyone else’s crap.”

You need medicines to get you through

The MRI tube is very narrow. For those who are claustrophobic, MRIs can be challenging. Many community members shared that they need a drug to help relax during the procedure. You mentioned several drugs that help you get through the process.

  • “The Xanax helps.”
  • “Never! I’m too claustrophobic. I have to take Valium.”
  • “Only because I took a muscle relaxer before my MRI.”
  • “Due to extreme claustrophobia, I’m always under general anesthesia, so kind of yes.”
  • “I don’t, but I take 10 mg of Diazepam, so I’m relaxed.”

They lead to back pain

MRIs typically require you to lay still on your back for a long time. Several of you mentioned struggling with the process. The MRI is uncomfortable, and being on your back is painful.

  • “I might be able to sleep if lying on my back didn’t cause my leg to spasm and cause serious pain.”
  • “No, because it hurts too much to lay on my back. I can’t even sleep on my back, so I dread MRIs.”

Meditation helps calm your nerves

Many also shared using meditation as a calming technique. For some, that leads to sleep! For others, it keeps you focused and calm through the MRI.

  • “I meditate and pass right out.”
  • “I’ve learned to meditate first, then doze off.”
  • “No, I use it as meditation time.”

We appreciate all the ways you engaged with this prompt! MRIs are part of life with multiple sclerosis (MS). Sharing how you handle the process helps everyone feel less alone.

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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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