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.

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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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Community Views: A Magical MS Bag

Life with multiple sclerosis (MS) requires lots of preparation and thought. There is much you need to successfully navigate each day.

We wondered what items, real or imaginary, help get you through a day. We asked community members on our Facebook page to tell us: “If you could create an everyday MS bag (think Mary Poppins pulling a lamp out of her purse kind of bag) that held everything you would need to be prepared for your day, what would be in it?”

You had some “practically perfect” responses!

Plenty of meds to help with flares and pain

Managing MS means keeping prescriptions and over-the-counter drugs with you. Flares and pain can arise at any time. You feel like a portable pharmacy.

  • “Pain killers.”
  • “Advil. Lots of Advil.”
  • “Medical marijuana.”

Tools to help you regulate your temperature

Temperature regulation can be challenging with MS. Many of you frequently overheat and sweat profusely. You would pull items to help you stay cool out of your magic carpetbag. While more of you need cooling items, some of you need items to keep you warm!

  • “Cooling pads.”
  • “My new cooling vest.”
  • “A portable cold shower and ice machine.”
  • “Air conditioning year-round. 2nd-floor condo facing southwest; year-round AC.”
  • “My neck fan.”
  • “Ice packs and cold drinking water!”
  • “A heater.”

Materials that explain MS to others

Often people in your life do not understand the nature of MS. It is wearying having to explain the disease over and over. Several of you wished for the ability never to explain this disease again.

  • “A huge stack of books explaining what MS is to hand people and tell them not ever to talk to me again unless they read the entire book.”
  • “Flyers of what MS is, so I don’t have to explain it anymore.”

Plenty of feel-good items

Comfort items were high on your list of things to pull out of your bag. These items help you feel supported navigating life with MS. Flares with MS are miserable. These items soothe both mind and body.

  • “Sweatpants, sweatshirt, my fuzzy socks, pillow, my softest blanket, Architectural Digest to look at pictures, a plant, my iPad, water, eye mask for sleeping, and my dogs.”
  • “Muscle relaxers, ice packs, pain meds, my teddy bear, phone and charger, and a good book if I can see. Oh, and some snacks!”
  • “Tennis shoes, Dr. Pepper, pain pills, room-temp water, sunglasses.”
  • “My iPad and a martini.”

A bit of magic

Many of you enjoyed using Mary Poppins’ magic in filling your MS bag! It is fun to dream big about what you could pull out of a bag when there are no rules. Your creativity and imagination are impressive!

  • “Fairy dust. For sprinkles of peace, joy, happiness, calm, and healing. And a couple million dollars.”
  • Energy.”
  • “The cool breeze of the NE ocean in summer and the dry weather of the SW in winter.”
  • “A toilet.”
  • “A never-ending paycheck, so I could stop working and tend to my health issues.”
  • “I would pull out a cure for all of us.”

We appreciate all the responses you provided to this prompt! From the serious to the silly, we enjoyed hearing what you would pull out of a magical MS bag. Thank you all for participating and being part of the community.

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MS Relapses: An Evolution of Perspective

By Stacie Prada

Multiple sclerosis relapses are scary for the symptoms they bring, and they’re overwhelming for the individual prognosis. Sharing our history and perspectives on relapses can help each of us gauge how we’re similar and different. It can show us how we are at different locations on similar paths or how we’re not on the same path at all. Anticipating how long my path is, what I may encounter along the way and how quickly or slowly I’ll reach each phase helps me put today in perspective and plan for the future.

Years 1 through 5 after MS Diagnosis were full of relapses, and my primary goal was to not have a relapse.  Those years were full of stress, confusion and frustration. The amount of information to learn and apply was staggering. The reliance on doctors to provide testing and assessment of whether I was having a relapse or not made me feel helpless. My health journals overflow with information to help me make sense of my body. Each relapse felt like failure.

Year 5Monitoring MS Symptoms and Trying to Avoid Relapses
I started blogging, and my lessons learned became more accessible for me to find later. This one is a go-to resource that reminds me to pay attention to what my body needs while accommodating what life requires. 

Year 6I Feel Like a Rock Star!
I was declared “stable and in remission.” I reached a point of confidence where I felt like I could finally tell if I was having an exacerbation or not. I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t. I’d learned my body enough to know which symptoms were normal for me. I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity. 

Year 8When is it an MS Exacerbation?
I documented and shared my mental checklist for relapse self-diagnosis with examples. I still read it whenever I wonder if I’m having an exacerbation.

Year 10Relapse Management
People with MS do not have complete control over whether or not they have a relapse. If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible. Until then, the only ways I think relapses can be managed are to tackle them when they happen, reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and try to make the fear manageable when they do happen. This post includes 13 Guidelines to follow that serve me well daily, then and now.

Year 13, Present Day – Symptoms without relapses: I look back to achieving the highly sought-after status of stable and in remission at year six with fondness and appreciation for the feeling of success. I envy my naiveté thinking that without relapses I’d be safe from disease progression.

The truth is nerves with old lesions can function for a while and give out much later. Some nerve function can repair, but it can also decline causing symptoms to worsen long after the relapse that caused the lesion. 

The majority of people with MS start with relapsing-remitting MS. The statistic that about half of people with MS transition to Secondary-Progressive MS in ten years is based on a time when disease modifying medications didn’t exist. Since these medications are intended to reduce the frequency of relapses and delay disease progression, I’m hopeful I’ll stay in the RRMS phase or take much, much longer than ten years to enter the SPMS phase. Differentiating between what is possible, likely or probable is tough. There are no guarantees, nor are there inevitable outcomes. 

With or without relapses, MS is with me and will shape my future. What I can do is keep doing what I’m doing. Keep learning, monitoring, adapting, and factoring my health into my daily decisions and long-range plans. Appreciate the people on this journey with me, and make sure to have fun along the way. Take very good care, all.

*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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What is this?

By Doug Ankerman

Several months after I was bestowed with my MS diagnosis, I hit a rough patch.

My legs were weak and wobbly. My balance off-kilter. But the worst, was my vision.

My focus would go in and out. While bright lights turned me into a shriveling shrew.

Oncoming car headlights forced me to wear sunglasses at night. Not in tribute to 80’s pop-star Corey Hart, but because the glare was blinding.

(Yeah, I continued to drive because I was young, dumb, and bull-headed.)

What was I experiencing? A relapse? A flare? An exacerbation? Frankly I didn’t care what it was called—all I knew was that I was terrified.

My mind spun wildly. Was my condition here to stay? Was this my new life? Did Corey Hart have MS, too?

Lucky for me a three-day bender of IV steroids (and with it, the taste of sucking on an iron popsicle) helped put things back to normal. Well, as normal as MS could be.

Time passed. Relapse-free. But multiple sclerosis continued a slow, gradual nip and tuck at my faculties till doctors gave me the title of being “secondary-progressive.”

Which was fine. Whatever. It was just name to me. Some may think my outlook is trite but I believe when one has MS, you toughen up. You learn to deal with every situation. And take nothing for granted. You appreciate small victories. Cherish every moment. Live each day like crazy. Because when you have MS, you know how quickly things can change.

If you think you are experiencing a MS relapse, talk to your doctor first. But also remain calm. Breathe deep. And if you can avoid it, don’t wear sunglasses at night.

*Doug writes silly stuff about MS and other topics on his humor blog at myoddsock.com.

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Postpartum Relapses

By Alene Dover

Did you know that you can be at an increased risk of a relapse after you deliver a baby?

This was the message that I heard as I was trying to fulfill my dream of becoming a mother.

It didn’t help that I was 40 years old at the time, and already felt that I had age stacked against me. Now, I had to add on the risk that MS could cause to my health postpartum.

I needed to understand and gather the facts.

Was this in fact true?

If so, was there anything that I could do to reduce my risk of a postpartum flare?

And once I had a confirmed pregnancy, this quest for the truth became deeply personal.

I started with my most trusted resources – my neurologist.

Not only is she highly trained and stays on top of all the latest research, but she also knows me and my body.

I was relieved when she said that the risk of a postpartum relapse had more to do with my risk of a relapse pre-pregnancy. If I was at a high risk of a flare before I got pregnant, then, yes, I could likely experience a flare after delivering my baby.

However, if my disease activity was stable for at least six months prior to conception, that was a valuable indicator that I wasn’t as likely to experience a postpartum flare.

This was further motivation for me to best manage my diagnosis of relapsing-remitting MS.

Thankfully, I have done a lot with diet and lifestyle to manage MS. As a result of this work and my doctor’s recommendations, I’ve had five years of stabilization. The odds were in my favor.

That said, I’m not a gambling girl.

What else could I do?

My neurologist shared that exclusive breastfeeding can further reduce my risk of a postpartum flare. Breastfeeding is a personal decision that each new mom can decide if it’s the right decision for her and her family, but certainly knowing this big perk that it offers is encouraging for us new moms in the MS community.

Beyond this valuable information from my neurologist, I also chose to prioritize three other factors that I attribute to helping me to managing MS. 

Vitamin D

During my initial bloodwork, my vitamin D levels were low, so I chose to supplement with the guidance of my doctor and get outside as much as possible during pregnancy.

Food

If I wasn’t motivated enough by the fact that my body was creating a new life, I was motivated to keep my body healthy so I could be an active mom once she arrives.

Stress

With all the preparations and anticipation, I had to be extremely intentional with managing stress. Stress doesn’t do our body – especially MS – any favors. So, gave myself grace during pregnancy, practiced yoga and mindful breathing.

If you’d like to follow along on my pregnancy journey, you can join me on Instagram at www.instagram.com/lesspharmmoretable or at www.lesspharmmoretable.com.

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Ask the Expert – MS Relapses

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

Question: How do you determine when a relapse is severe enough to be treated with IV steroids versus waiting to see if the relapse will go away on its own? Also, if a patient does not receive IV steroids, what other treatments or changes in lifestyle may be recommended for a less-severe relapse?

Answer: Clinicians vary widely in their threshold for using steroids for relapses… and patients vary widely in their desire to be treated with steroids for relapses. The most common use of steroids is for a relapse that interferes with function. For example, severe vertigo, weakness, or gait dysfunction are common symptoms that can greatly interfere with function.

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