About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

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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Ask the Expert – Cognitive Issues

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

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

Question: What strategies can you recommend to help with cognitive issues? 

Answer: First, let’s define cognition. Simply, it is all of the processes involved in learning, remembering, and expressing knowledge. It involves how we perceive, how we think, and how we convey knowledge verbally and nonverbally. 

Although many people with MS, and at all stages of MS, express cognitive symptoms or problems, they are generally mild in nature. The most common complaints that I hear involve difficulties in memory, multitasking, learning new information, and processing speed.

Some cognitive changes may be due to MS itself. Often, however, the problems are due to, or are compounded by, other factors such as poor sleep, medication effect, pain, or depression. The first strategy, therefore, is to assess the contribution of mood, pain, medications, and sleep – and then treat them appropriately. 

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DIY: Do-It-Yourself Fundraisers are Integral to Supporting MSAA Programs

DIY Do-It-Yourself Fundraiser icon for MSAA occasions, including a sneaker, bicycle, swimmer, and video game controller icons as ideas for fundraising

As summer is winding down, we reflect on the fun we had with family and friends relaxing and trying to stay cool – backyard barbeques, trips to the beach, ice cream cones, and time spent poolside. But for individuals living with MS, staying cool during the summer can be a challenge. That is why the Multiple Sclerosis Association of America provides free cooling vests and accessories to qualified individuals with MS, throughout the summer and all year long. 

As you can imagine, symptom-management products such as cooling vests come at a significant cost. MSAA relies on a community of supporters stepping up to make a difference. Our DIY fundraising platform makes it easy for anyone to set up an MSAA donation page for their fundraising event or campaign. 

In fact, setting up his fundraising page was the easiest thing Richard Core did all summer, who raised $6,000 for MSAA with his Richard’s Ride Across America. 

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I Wish My Body Had a Dimmer Switch to Relax…

By Stacie Prada

It’s too bad our neurological wiring doesn’t include on/off dimmer switches like some of the electrical lights in my home. The central nervous system and myelin degradation caused by multiple sclerosis are often compared to electrical wires with the outer coating frayed or damaged. It seems only fitting that we should be able to extend the metaphor and enjoy the ability to increase or decrease the current through our nerves. The fantasy of being able to turn off or dim misfiring electrical signals to my arms and legs when spasticity is acting up is enticing.

Dimmer Switch written on a blue post-it talking about how to relax
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Feet Up

By Doug Ankerman

Kick back. Tune out. Unplug. Turn off. Relaxing is as simple as that, right?

Maybe. But it helps.

Today’s totable technology makes it difficult to “get away from it all.” Laptops, cellphones, Bluetooth, iPods, WiFi…the list is longer than your power cord.

There is no escaping the news, the noise or pictures of what Sharon ordered at that Italian joint.

With MS my brain & body are frazzled enough. The buzz of mindless clutter only adds to a defragged nervous system.

As a self-proclaimed news junkie, it’s even harder for me to step away from the gear to find my blissful “chi.” But it can be done. And it may be easier than you think.

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Summoning Summer

By Stacie Prada

Well into July this year, summer weather hasn’t arrived where I live yet. Days are cool and pleasant, but intermittent rain and cloudy days persist.

A few days ago, I ordered an iced coffee for the first time this year. With my first sip, I had a strong sense of summer. It was an involuntary and automatic response where my exhale was one of complete satisfaction. It made it clear to me how much seasons are about more than the weather. I’d been waiting for summer to start, and I realized I can enjoy summer without waiting for the weather to change.

Summoning Summer written on a yellow post-it talking about summer weather
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All About the “h”

By Doug Ankerman

There are two sides to every issue. You have the pros & the cons, the agree & disagree and the ever-popular for & against.

Summer is one of those issues that is widely split. Some love it while others can’t stand the thought. As I will explain, the big difference between the two sides is all about the “h.”

Picture of a blue Etch A Sketch saying Ah Summer and Ahhhh Summer drawn by guest blogger Doug Ankerman

“Ah Summer!” people. They thrive during this season. Basking in the warmth. Soaking up the sun in all vitamin D glory. Energy & vitality all day long.

Meanwhile, “Ahhhh Summer!” people do their best to avoid the season’s amenities. Lurking in the shadows away from direct sun. Never straying far from AC or a powerful fan.

Unfortunately, those of us with multiple sclerosis tend to be in the “Ahhhh Summer!” group. The harsh sun drains our energy like a V-8 engine uses gas driving up a mountain. Plus, summer’s high temps and thick humidity soak us further into a wretched pile of human goo. But no need to suffer my friend as there are ways to make your summer pleasant & comfortable.  Here are a few of my favs…

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The Trying Game

By Lauren Kovacs

Well, summer has exploded like a bad firework. The dreaded heat has washed us ashore and left us feeling wrung out. Exhaustion is our needy, constant companion on the beach, while the ship parties.

I am right there with ya. Feeling left out seems to engulf my summers. That ship stranded me on the desert island called MS. Even in my chair, wet noodle syndrome hangs around.

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Ask the Expert – Numbness and MS

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

Headshot of doctor Barry Hendin, chief medical officer for MSAA

Question: Does new or increased numbness indicate a worsening of MS, and is this symptom typically permanent, or can it subside on its own?

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