May the Simple Things Bring You the Most Joy

Coffee in hand on a snowy day.

The holiday season can be filled with so much excitement. Families gather to celebrate, many take pride in decorating their homes, cooking becomes a marathon event, and last-minute shopping can be unavoidable. I truly enjoy the holidays because it brings people together and kind gestures are plentiful. The generosity seen during the holiday season is inspiring, and no act of kindness is too small. It is easy to get wrapped up in the hustle and bustle of the holidays and lose track of the true meaning behind our traditions.

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Ben Lang-Roma – November 2022 Artist of the Month

Pandemic Life by Ben Lang-Roma

MSAA 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 Ben Lang-Roma as the November Artist of the Month. Ben is from Lynnwood, WA.

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Falling Back in Love with Life 

By Emily Gordon 

I remember the day like it was yesterday. September 24, 2012. I remember the smell of the room. I remember what the ring of the phone sounded like when I got the call in the MRI waiting room. I was 22 years old. I had just graduated from college. I was working at an NBC affiliate news station, living out my dream of being a sports reporter. It was all happening for me, or so I thought.  

It turns out that a lot was happening in my brain and spine as well. It was a crisp fall day, and my favorite day of the week: Football Friday! I had been assigned to cover three high school football games that night. It was my very first game of the season. I was confident in my scripts; live camera hit and tag out. The live camera hit came and I looked up at the scoreboard to recite the score, then turned back to the camera and forgot what I had just looked at, a second ago. Luckily, I recovered from that fumble (ha) and recovered fine throughout the rest of the night. However, that slight hiccup had my mind racing. Why did that happen? Is this normal? Am I sick? The intrusive thoughts would not stop coming.  

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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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Fall Into Your MS Health Journey

By Emily Gordon

The change of seasons is exciting for most, but for those living with MS, it can be a daunting time. The weather is getting chillier, which means for some of us, our spasticity is kicking in. The extreme fatigue can reach an all-time high, and cognition can begin to suffer.

The colder months ahead can cause a bit of stress regarding the uncertainty of your health. Tremors, numbness, tingling, trouble with balance, issues with cognition… OH BOY! It can be nerve-racking to have to think about all these things. I have picked up a few things throughout my 10-year MS journey that have helped me manage these symptoms.

Get moving

You could find it more difficult in the coming months to get moving. Daily movement is not only good for your body, but it is also great for your mind. Take time to enjoy the season! Get outside for a walk if you are able and take in the beauty of autumn and the colorful foliage. Or stay indoors and do some stretching and/or yoga. An MS diagnosis does not mean you need to stop living. It is a time to START living. Enjoy the little things in life!

Boost your mood

Every morning I meditate. I take 10 minutes before everyone in my house wakes up to just BE. Be still, be present with my thoughts, set my intention for the day, and be mindful of my emotions. Living with a chronic illness – can bring rough days, be mindful of these rough days and feel what you need to feel, whether it be frustration or sadness.

Be proactive and productive

It is so easy to fall into a rut. I have used the “I’m too tired” statement one too many times. The truth is yes, I was tired, however, I have learned in this journey that being “too tired” and not doing anything will only make you more tired. Fatigue is unfortunately a big part of battling MS. I know my limits and sometimes I do have to say, “I’m too tired” and rest. But on the days my body and mind can afford to get ready, put some makeup on, get dressed and have a wonderful time are always the times I am glad I pushed through my fatigue.

Stay on top of your health

Write down when you are experiencing a new symptom and talk to your doctor about it immediately. Be conscious of even the slightest change in speech, mobility, or balance. In 2020, my infusion center had to shut down due to the pandemic. I was behind on my disease-modifying treatment by 2 months. I woke up one morning and was unable to swallow, move the left side of my body, or speak. I spent two months in the hospital and 12 weeks (about 3 months) in rehab teaching myself how to walk, talk and write again. MS is completely unpredictable and changes in your health can happen overnight. Take it from me. Be your own patient advocate, since after all, no one knows you better than well… you!

MS has been a part of my life for a decade. It has certainly never been easy. This disease is extremely unpredictable. I will leave you with a saying I use when I am having a rough day.

“It is not about the cards you’re dealt, but it’s about how you play them.”

PLAY WISELY.

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Work Smarter, Not Harder.

A picture quote by Michael Altshuler illustrating how you can work smarter that reads ‘[The bad news is time flies. The good news is you’re the pilot.]’

The term “Time Management” is an oxymoron, if you really think about it. The truth is, time cannot be managed. Time marches on its own schedule and the clock continues to tick.  Time is out of our control, but we are in control of what to do with our time. If you need to cross things off your to-do list, it’s important to prioritize tasks and divide your time between different activities. The key to greater productivity and performance is to work smarter and not harder. But the question is, how do we work smarter and not harder?

Prioritize. If you find you’ve bitten off more than you can chew with your to-do list, it’s important to prioritize your tasks based off urgency and importance. Focus on the urgent tasks first and set aside the non urgent tasks to do later. Delegate and divide your tasks!

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Signs of an MS Flare

Living with multiple sclerosis (MS) means dealing with flares. Flares occur when symptoms worsen for at least 24 hours. To be considered a flare, it also must occur 30 days or more after the last attack.

We wondered what cues your body gives you about flares. We asked our community on Facebook, “How can you tell that you are experiencing an MS flare?” We got more than 250 responses, so it is clear that there are many ways flares affect you.

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No Time Like The Present

By Lauren Kovacs

Just do it.  I am full of cliches.  I admit I lean to the dork side at times.

Time is of the essence.  So grab your life by the horns and go.  Time management is a key to MS.  Sew it into the core fabric of your life.  Nourish it like a sensitive plant. No last minute Lucy here.

Build in extra time.   I hate rushing.  Now is not the time.  Be the turtle. Take your time and don’t rush.  I drop more stuff, if I rush.  If I wait for an intention tremors to pass, I can do it.  Find your own rhythm. 

For example, I often get up two to three hours before mass (church).  Makeup, hair, clothes, medicine and breakfast. My “Barbie arm” and a leg often are stiff. I never know how easy or hard dressing for church Might be.  “Get errr done” as they say.

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Little Things

By Doug Ankerman

Time management?  When one has multiple sclerosis?

Good one!

That’s like asking if you would rather walk on broken glass…or hot coals?

You see, I HAVE the time.  I no longer work and my obligations are few, so time is no prob-lemmo.  Management, on the other hand, well that’s where MS fudges things up. 

Because despite all my pre-planning, organization and visual run-throughs, I am always behind.  Or so it seems.

Always longest in the shower.  Pokiest to get dressed.  Last to the car.

Trying my darndest, MS is the speedbump I struggle stepping over.

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Goal Management Instead of Time Management

By Stacie Prada

Time is fixed and passes at its own pace.  Goals can grow, contract, adjust and evolve.

Often advice for time management includes instructions to make lists, dedicate time for tasks, be organized, get up early, multitask, do more, and just generally be different than you’ve been.  While some are good suggestions, the attempt to fit an individual’s unique experience into a fixed and uncontrollable passage of time can miss the mark. It can be overwhelming and unrealistic when not considering a person’s specific life circumstances, obligations and health.  When already feeling like there isn’t enough time, the advice to do more can feel offensive. 

Time management seems to inherently approach the future from a perspective of scarcity.  It is true there is only so much time in the day, the week, the year, and a lifetime.  Each moment passes whether we’ve spent it intentionally or not.  Even so, I’d rather approach the future with a feeling of abundance.  There is limited time, I have limited energy and abilities, and I also have the opportunity to fill that time in ways that fulfill my needs and goals. I can do this by being clear about my immediate and long-term needs as well as my goals in each moment and for my life.

Time management advice recognizes that it can be a project to fit everything in, but it often forgets it can be effort to fill the time.  I’ve had both in my life, and at times they’ve paradoxically co-existed. There were fast-paced workdays where dedicated, productive accomplishments never seemed to put a dent in the backlog, and there were evenings with long stretches of solitude where loneliness was at the ready to dominate my head space. The daily schedule of surge and stagnation with such severe contrast was exhausting. That experience is telling for how different needs and goals dictate different choices and solutions.

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