An ABC Mantra: Always Be Curious

Posted on January 24, 2022 by MSAA

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

Posted on January 21, 2022 by MSAA

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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A Slew of Hope

Posted on December 20, 2021 by MSAA

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.

Intentional and Collaborative Planning

Posted on November 17, 2021 by MSAA

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.

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/

Blame the Disease, Not the Person

Posted on October 22, 2021 by MSAA

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.

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.

MS Relapses: An Evolution of Perspective

Posted on September 27, 2021 by MSAA

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 5 – Monitoring 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 6 – I 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 8 – When 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 10 – Relapse 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.

What is this?

Posted on September 22, 2021 by MSAA

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.

Postpartum Relapses

Posted on September 8, 2021 by MSAA

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.

Identity, Humor, Intelligence, & Chronic Illness

Posted on August 20, 2021 by MSAA

By Stacie Prada

Living with a chronic illness that progresses and has no cure has made me hyper aware of how I view myself and others. Faced with potential physical disability and cognitive decline, I realized how much of my identity was based on what I can do, say and accomplish.

I remember my early years navigating acknowledging I had multiple sclerosis. The long list of symptoms and conditions that can result from MS lesions is frightening. Cognitive changes scared me. They can affect a person professionally, compromise analytical and problem-solving skills, and end a career. They often change personal relationships, and I wondered if they would change how I interact with people.

These scared me, and in that swirling jumble of symptoms, possibilities and impacts, I worried what it might mean for my personality. I worried it would change how people see me and how I see myself.

Would I lose my sense of humor and intelligence? Would my personality become something different? Would I like who I become?

It turns out I am becoming more serious and intentional, and I’m also keeping my quick-thoughts and silliness. MS integrated into my identity. It didn’t displace it. MS is a big part of my life, but so are all of the other aspects of my being.

I haven’t lost my sense of humor, but I have become clearer about why things make me laugh. Something I experience or observe may make me chuckle to myself, and whether I share it with the people around me depends on the situation and relationship. Anecdotes and observations on living with a chronic illness can ring true and boost connection with some, and they can make others uncomfortable. Sometimes a modification to how it’s told can make it relatable, and other times it’s worth waiting to share with a person who already understands.

Being silly can sometimes be seen as immature or flippant. Growing older, gaining confidence and learning every day helps me share my thoughts more and worry less about what people will think. If someone interprets me differently than I’d like, I’ve gotten better about not owning their opinion.

I’ve watched friends experience physical and cognitive impacts due to illness and aging. Searching for the right word to express their thoughts can take longer, but it’s also because the right word matters to them.

Intelligence is not the ability to retrieve a word or speak quickly. It’s understandable yet misguided to presume communication equals comprehension and intelligence. I’ve learned through the years and many friends that the ability to communicate or retrieve words have no relationship to a person’s intelligence or understanding of things.

When a person takes their time to find the word that accurately captures what they want to convey, I’m often rewarded with a perspective and insight I hadn’t anticipated. It encourages me to honor the person and the conversation by staying quiet, interested and unhurried.

Curiosity and not rushing a conversation are crucial. Not finishing a sentence when they’re searching for the word reaps rewards. I may think I know what they’re going to say, but often they surprise me with more depth, cleverness and humor than I’d anticipated.

If I could talk to the newly diagnosed me from 13 years ago, I would tell her this:
Living with chronic illness affects everything, but MS will integrate into your identity in a way that matches your personality. Your intelligence, humor and identity will evolve, but they will be what you make them. You’ll gain insight into a world that teaches you about others and yourself. The experience will make clear who you are and who you want to be in this life. Through all of it, you’ll still be you.

Day Trip Outings

Posted on July 21, 2021 by MSAA

By Stacie Prada

Living with MS can lead a person to avoid doing things outside of the routine. Dealing with unpredictability can make a person avoid additional inconveniences and uncertainty.

When my gut reaction is to think something is too much effort, it’s good for me to think about why I’m resisting. There might be a good reason for resistance, but knowing the cause is helpful. If it’s rooted in avoidance or fear, I want to challenge myself to identify what I can do that would offset the what ifs.

What if it’s not worth the effort? What if I go somewhere and my MS symptoms rear up? What if I need something and I don’t have it or I can’t get it?

Living well with MS requires knowing yourself well, respecting and adapting to health needs, and planning ahead. All of these life skills are well-suited to successful and enjoyable outings, and doing new things can add excitement and fulfillment to any life. Day trip outings are perfect for experiencing the joy of travel while keeping the comfort of sleeping at home.

You do you. If you don’t want to go somewhere or do something, don’t! But if you want to do some day trips and are feeling resistant, consider this:

Perpetual planning allows spontaneity to thrive. Many barriers can be accommodated with creativity, preparation and a willingness to explore alternatives. Over prepare and expect things won’t go perfectly as planned.
Pack a day bag with personalized essentials to ease stress. The day bag should include anything that will provide comfort and options. I like to include water, snacks, medication, bath tissue, sunscreen, jacket, hat, extra shoes and socks. Think about everything that could be in the car to make it feel like any circumstance or change of plans could be accommodated.
Set reasonable expectations. Overestimate travel time, and grant yourself permission to change plans.
Focus the trip around one anchor focus or goal for the day. Create a mental or written list of other things that can be done, if plans change and energy and time allow. Back up plans help diffuse disappointment when things don’t go as intended. Schedule plenty of extra time to do more or less in order to take good care for yourself. Delays and unexpected changes of plans can sometimes lead to wonderful opportunities.
Allow for lots of bathroom breaks, and never pass a restroom assuming another one will be available later. It’s better to go too often than to not have access to one when it’s needed.
Make the travel experience as fulfilling as the destination. Go with someone you want to spend time with. Have a good playlist, podcasts or book on tape ready to play. Consider why you’re going. If it’s a trip to a view point, there might be clouds obscuring the view when you get there. Enjoy the journey, the people and doing something out of the routine.
Look for surprises, and be open to exploring them. Allow for impromptu diversions. Rainbows, herds of elk and skydivers landing have all been rewarding unplanned sights I’ve enjoyed because I looked beyond the road and was willing to turn off the planned drive.
Use technology, but don’t get overwhelmed. Look online or use apps for recommendations in the area, and consider them. I love using navigation apps for simplifying the directions and letting me know the time and distance to my destination.
Talk to people. Locals always know the best places, and they love sharing special tips that you might otherwise miss. Just connecting with people can be fulfilling too!
Interrupting someone is required when pointing out something nearby or of interest that won’t be visible a few moments later.
There’s always time for ice cream. Literally or figuratively, indulge and enjoy the trip!

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