Ask the Expert– MS Hug

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

Headshot of doctor Barry Hendin, chief medical officer for MSAA
Barry Hendin, MD

Question: In MS, what would cause a very tight and sometimes painful squeezing around the body, or elsewhere, even in the hands or feet? 

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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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It’s a Marathon, Not a Sprint.

At the start of the New Year, many people have set new goals and they are committed to completing those resolutions throughout the year. But here’s the thing – it’s very common for people to lose that motivation by the time February rolls around. Why is that? Well, many people set goals that are too broad, too complicated or simply outside of their comfort zone.

So, what can you do to stay on track with your goals? There are several ways to motivate yourself and keep yourself going month after month.

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Ready, steady, go!

Every new year is a time to begin fresh and each day is full of endless possibilities. Set goals for yourself and strive to achieve them. Do not wait for the perfect moment to begin something. Take a leap in faith and everything else will align itself. Whatever direction life may take, prepare yourself to improvise every day. Below are some strategies that will help you stay on course:

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Hopes and Goals for the New Year

With each new year, many people set goals and intentions for the best possible future.

Thinking about the new year means a lot of different things to people in the multiple sclerosis (MS) community.

To learn more about this, we reached out on the MultipleSclerosis.net Facebook page. We asked, “What is your biggest hope for your multiple sclerosis journey in 2023?”

The question received more than 300 comments. Here are the themes that emerged.

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Peanut Butter and Banana Overnight Oats

Peanut Butter and Banana Overnight Oats is a great way to start the day! This easy recipe combines oats, peanut butter, banana, cinnamon, and maple syrup into the most delicious meal. Can be eaten at any time of the day too!!  Get creative and add extra ingredients if you like; nuts, berries, hazelnut spread.  Yummy!!!

Ingredients

  • 1/2 cup quick oats
  • 1 teaspoon whole flax seeds (optional)
  • 1/4 teaspoon cinnamon
  • 3/4 cup milk
  • 1 teaspoon maple syrup
  • 2 tablespoons peanut butter
  • 1/2 banana (add when ready to eat)

Instructions

  1. Mix the oats, flax seeds, and cinnamon in a mason jar or a bowl.
  2. Add the milk and maple syrup and stir well.
  3. Drop in the peanut butter and mix it around.
  4. Place the lid on the jar or cover the bowl with plastic wrap. Refrigerate for at least 6 hours.
  5. When ready to eat, top with the banana slices or add any ingredients you like.
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Production Levels May Vary

By: Diana Cruz

Motivation is a gift that many people overlook. When motivation is lost, the momentum once encompassed to achieve your goals and accomplishments typically decreases. Loss of motivation and momentum can easily be viewed as laziness or lack of desire to truly go after what you want; however, it is much easier to judge from the outside looking in.

Remaining motivated to complete the goals you have set for yourself, even daily tasks, can be daunting when factors out of your control come into play. Having an impairment or sickness can take a toll like no other – one that can make you feel scared, unmotivated, and alone. It can feel like the universe is out to get you. As someone with an autoimmune disorder, experiencing flare-ups with my health can affect every aspect of my life. It becomes an impairment physically, mentally, and emotionally – making completing tasks and remaining motivated nearly impossible some days. 

When my disorder gets the best of me, I tend to remind myself of three things:

  • It is not only okay to take time to rest – it is necessary. Your body cannot do its best if it is in “Go” mode all the time. If your body needs time to recover, listen to it and respect that. You may find that taking time off will benefit your mind and body in an impactful way.
  • Doing your best looks different every day. Completing day-to-day tasks, regardless of how minor, are still accomplishments. It is unrealistic to always tackle the world.
  • Your weaknesses are your strengths. Nobody knows what it takes to be you, and that is your greatest superpower. Your ability to push through even your toughest of days is admirable and inspiring. Be proud of yourself.

Rather than judging the positions of others, praise those who are consistently putting in effort despite their circumstances. Be kind – you do not know everyone’s story. And lastly, please remember to eat, drink water, take care of yourself, and do your best – whatever that may look like today. Keep your support system close and remember that asking for help does not make you weak, it makes you resourceful.

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Slow But Steady Wins the Race

February has arrived, and we are one month into our new year’s resolution journey. Let’s face it, it can be difficult to keep the motivation we once had. While I had the best intentions to get up every morning and go for a walk, some days I didn’t feel like changing out of my pajamas, and that is okay.

The momentum that developed in January suddenly started slowing down as the month passed. While I started my new year’s resolution in full force, I have noticed my motivation fluctuating as of late. Surely, I’m not alone. Many of us have experienced our motivation decline as the year goes by. It’s not uncommon to lose track of our original goal and slowly fall back into old habits. What can we do when this happens? And how can we retain that excitement and focus we once had?

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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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Carmella Certion – February Artist of the Month

MSAA’s Artist of the Month features the work of many talented artists affected by multiple sclerosis as part of our annual MSAA Art Showcase. Each month we share these artists’ inspiring stories and beautiful artwork with you as our Artist of the Month. This month, we celebrate Carmella Certion as February’s Artist of the Month. Carmella is from Philadelphia, PA.

Reine du Carnaval by Carmella Certion
“Reine du Carnaval”

About the Artist – Carmella Certion

I am an artist, gerontologist, and marriage and family therapist currently living with MS. It all began with a simple painting of a cat for my granddaughter’s room, after I gave it a mini-makeover last summer during the pandemic. I mostly paint abstracts, land, and cityscapes and I’ve only taken one class. My studio is located in my Philadelphia, PA bedroom where I mostly paint in bed due to a plethora of health challenges. I find painting relaxing and it also helps ward off depression and anxiety, which I suffer from periodically. I love to use bright colors, geometric shapes and texture in my work and my philosophy is simple: Art should be fun!”

To see more about Carmella and the rest of our artists, please visit our Art Showcase.

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