Our Needs as Loved-One and Caregivers

By: Suzanne Marriott

Abraham Maslow’s Hierarchy of Needs

I remember when my therapist reminded me that my husband was often in survival. She was referring to the most basic of human needs as defined by Abraham Maslow in his Hierarchy of Needs. 

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Intentional Motivation

By Stacie Prada

It’s hard to stay motivated to do everything I think I should do to be healthy and live well with Multiple Sclerosis.  It seems like the hope of living with fewer MS symptoms and potentially less disease progression should be enough motivation, but temptation, fatigue, and a bit of resentment that I even have to deal with MS demotivate me.

Demotivation can also come from unlikely sources.  A few years ago, I saw a physical therapist for hip pain. I described the fitness routines that I’d done for years. It included a daily minimum stretching and activity quota, and I was proud of myself for always doing it.  I was very flexible and fairly strong. My habits supported my fitness level.

Accurately, the physical therapist told me I had plateaued with my exercises. I needed more strength training to address the hip pain and improve my fitness level.  I did the prescribed exercises until the pain subsided, but it was tough doing everything they suggested. I was discouraged that I wasn’t doing it all. Not only did I stop doing the prescribed exercises, but I also stopped doing my minimum daily fitness regimen. 

I took good information, and I mentally warped it into nonsense.  Because my previous minimum daily routines weren’t enough, I concluded they weren’t worth doing. I justified that I was still active and exercising, I just wasn’t doing it daily. 

Put in writing, it’s obviously flawed and unhelpful logic. In my mind, it made sense.  In reality, I squandered good habits that were helping me.  After a few years without daily stretching, my flexibility and strength diminished. Things that used to be easy are painful. I recently reintroduced my daily minimum regimen as mandatory, and I’m seeing improvement. My flexibility and strength are increasing, and my movements are less painful. 

Reflecting on this experience inspires me to be more intentional about what motivates me and what discourages me. 

The motivation that comes from excitement works better than fear.  I have more success working toward goals than trying to avoid potential consequences. I want to feel like I’m being rewarded, not punished.

My resentful and fearful thought process is that I have to exercise so that I maintain my mobility as best as possible because I have a sucky disease that mostly targets my spine and affects my legs and arms. If I don’t keep moving, I won’t be able to keep moving.

My enthusiastic thought process is that I get to exercise and live in a body that can do things I enjoy. The better I treat my body, the better I’ll feel, the more I’ll be able to do, and the better odds I’ll have aging with MS. If I keep moving, I’m more likely to be able to keep moving.

Both approaches are true, and both work. When my resentful mindset kicks in, I hope to notice it and not give up.  I want to remember how much my body has done for me and continues to do for me and set a goal that excites me.  It doesn’t have to be a big goal, it just needs to be meaningful and encouraging. When motivation comes from an enthusiastic mindset,

I’m eager to do what’s good for me, and I’m happier overall. It’s a win-win!

*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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Multiple Sclerosis Generations: From Diagnose & Adios to DMT to Crowdsource

By: Stacie Prada

Generations offer connection with those before us, with us and after us.

When age groups are categorized by generations, it’s interesting to see how birth year and world events influence life circumstances and outlooks. In the United States of America, the generally accepted generations include the Lost Generation, the Greatest Generation, the Silent Generation, the Baby Boomer Generation, Generation X, Millennials, Generation Z and Gen Alpha.  It occurred to me that people with Multiple Sclerosis could also be considered as living in other various generations depending on how old we were at first symptoms and diagnosis, the year we were diagnosed, and the understanding of MS and available treatments during early adulthood. 

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Cultivating Kinship on Social Media

By: Stacie Prada

An estimated 2.8 million people worldwide are living with Multiple Sclerosis, and some choose to use social media.  They share their experiences, and they allow us to see their vulnerability for the betterment of all. Social media can be cold and hurtful, yet it can bring us community and kinship. It’s an individual decision to participate or avoid it.  It’s scary and risky to put ourselves out there, and we need to support those who are willing to share. 

I’m grateful for individuals living and speaking their truth.  Some have been sharing for decades, and some are just starting. I’m heartened by commenters who support with compassion and scroll past when things don’t speak to them.  I’m inspired by so many who cheerlead and model respectful interactions with exceedingly tough topics. I hope we can hang on to the benefits of social media and lose the hurt it can cause.  We need to protect our vulnerable peers, and I hope we can do this with compassion.  We are better for the myriad of voices and experiences. Suffering alone is misery.  Knowing we aren’t alone helps us get through the tough stuff.

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Your Best Year

By: Doug Ankerman

2022 is over and you are already ankle-deep in 2023.  What will this new year bring?  No one knows for sure.  But I believe you can give yourself an edge for the better with a few small, but subtle changes.  Here are some ways to start…

  • Stretching before bedtime eases a jittery body.
  • Drink drink drink water.
  • MS is relentless.  Be relentless right back.
  • Do what you can to improve what you have.
  • Slip-on shoes are wonderful.
  • Read out loud to strengthen your voice.  (Keep your belly tight)
  • Waggle your fingers.  Wiggle your toes.
  • Forget the music.  MRI-time is nap-time.
  • Take lukewarm showers.
  • Get as much done when your energy is highest.  (Mornings for me)
  • Invite no one to your pity party.
  • Move what you can as much as you can.  Then do it again.
  • Routines may be boring but are essential with MS.
  • Staying hydrated eases constipation & muscle spasms.
  • Clean out the damn rollator basket.
  • Wall-walking is a talent.
  • Focus on what you CAN do.  Not what you CAN’T.
  • Exercise/movement burns energy-but gives back so much more.
  • Big handle silverware is cool.
  • Breathe deeply.  In through the nose.  Out through the mouth.
  • A clear pee is a good pee.
  • Crawling is not just for babies (and is good exercise).
  • Take meds at the same time every day.
  • There is no magic pill, shot or infusion.  You gotta work it too.
  • Leaving yourself a note/list eases your mind.
  • Be inventive.  Use what you have to scratch your back.
  • Put your stuff away in the same place so you can find it.
  • You don’t need a gym.  Just roll around on the floor for a workout.
  • When will this list ever end?
  • Pull-over tops are easy AND fashionable.
  • Move it, use it or lose it.

And finally, MS never stops. Neither should you.

Well, I hope this helps.  Here’s to your best in 2023!

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

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Tracking Symptoms and Treatments with Compassion and Encouragement

By Stacie Prada 

With each new year, I think about what’s ahead, what I can control, and what will make the next 12 months fulfilling for me.  Instead of pushing myself to do more or be better, my approach this year for health management is to track what helps me manage my health with methods that are easy to use and visually informative.  

Knowing what my body needs is an ever-changing puzzle, and tracking provides clues for what could be the cause or remedy for things contributing to health challenges. Add aging and menopause to living with Multiple Sclerosis, and knowing how to best manage my changing body is not easy.  

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A Season of Convergence 

By Stacie Prada

The holiday season for me is one of convergence. A convergence of work demands, holiday tasks, gatherings, gifts and merriment. It feels like everything needs to get done, and there’s not enough time in the day or energy in my body to do everything. It affects my routines, eating habits, cash flow and health. Yet I love it and look forward to it every year.

Decorations brighten the landscape, workplaces and homes. Stress abounds, but so does good cheer. Frenzy and serenity coexist.

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Thoughts Too Big to Share: An Early Fatigue Symptom

By Stacie Prada

When Multiple Sclerosis fatigue rears up, my first noticeable sign is when I stop telling stories that come to mind. I edit myself more, and I contribute to conversations less. A decision point noticeably inserts itself into the thought process.

Do I have the energy to share this story? Am I able and willing to commit to staying in the conversation? When I’m experiencing fatigue, the answer is no. Things I find funny, interesting or relevant become thoughts too big to share.

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Seasonal Well-Being Checklists

By Stacie Prada 

For me, autumn elicits memories of a new school year, football games, raking leaves, carving pumpkins, and pressing apples for cider. Prepare for winter with home tasks and wardrobe shifts. Move sweaters, boots and winter wear from boxes or the back of the closet to the front for easier access. Suggestions for weatherizing homes and belongings are prevalent and specific, but they are less so for personal health and well-being.   

Often, I experience recurring and seasonal symptoms before I realize I have a method that helps me cope.  I’d love to be able to avoid the suffering it causes if at all possible. I decided to create and follow a seasonal list of tasks to proactively address my health needs. It has an emphasis on issues that Multiple Sclerosis challenges or creates for me each year.  

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Fall — Season of Revival? 

By Doug Ankerman

Step outside and you’ll notice the change.  Temperatures beginning to dip.  Breezes blowing a tad harder.  Trees morphing from green to an artist’s palate of reds & yellows. 

My once vibrant flowers now pots of muddled blandness.  Fall sucks the life out of everything once bright and lively.  A looming forecast of what’s to come. 

Fall is gnarly…Err wait, what?  No, no fall is good!   

Fall is when I, as an MSer, come back to life! 

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