Author Archives: MSAA

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.

Hands In The Air

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By Doug Ankerman

I compare my MS experience to that of riding a roller coaster.

Buckled in I began a long, slow climb up the hill having all sorts of weird numbness and tingling. A draggy foot. A few falls. Heck, I didn’t know what was happening.

As the coaster reached the very crest, I was given a diagnosis of multiple sclerosis just before the speeding plunge down the other side. Hairpin turns, twists and loop de loops followed. Some riders screamed, putting their hands in the air – but not me. No way. I held on with a death grip. I was too terrified to let go. I mean, who knew where this out-of-control journey would take me?

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Playing the Cards I’m Dealt

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By Stacie Prada

I love the emotional and intellectual sides of aging. With each decade, I grow more certain about who I am, what matters to me, and where my strengths lie. I worry less about pleasing others and more about doing what’s right for my physical and mental health. Without multiple sclerosis, I likely would have enjoyed this aspect of aging, but I believe having MS accelerated my drive to live a life I love and feel good about myself.

I thought some things were non-negotiable while I was pre-diagnosis and in peak physical health. Post MS diagnosis, those same things were reconsidered and proved to be negotiable. With diagnosis, my body’s confusing aspects had an explanation, and I could no longer dismiss them when they appeared. Work and the expectations people placed on me were no longer the highest priorities. Rest, sleep and personal fulfillment earned positions of power that would affect choices and influence decisions. For me, this was helpful and necessary.

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Becoming Aware

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By Gina Ross Murdoch

Welcome to MS Awareness Month! Over the next five weeks, MSAA and the entire multiple sclerosis community will focus on a myriad of areas around living with MS, diagnosis, research, advocacy, and the impact MS has on loved ones. These are all important areas of focus throughout the year but now, in March, we take time to really lean in on what they mean for the nearly one million individuals living with MS and those who love them.

Awareness is defined as “knowledge or perception of a situation or fact” and “concern about and well-informed interest in a particular situation or development.” These definitions give us a good starting point, but “awareness” goes much deeper than that.

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Ask the Expert – Differences in the MS Experience

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

Question: Why does each person with MS experience different symptoms?

Answer: It shouldn’t surprise us that everyone experiences their MS differently since we are all unique, but the individual factors producing that uniqueness are worth considering in some detail.

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Staying Busy

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By Lauren Kovacs

I must say this is easier said than done. 

I am kinda bored actually. I am a homebody, but even I have limits. MS has aged me, too.

I mean, I have always liked birds, but watching them used to bore me. Now I can watch them up close. It is like watching a fight club with feathers. Male Cardinals and Blue Jays are jerks. Bullies. I can watch a soap opera right outside the window. 

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Short Days, Dark Nights, and Big Hopes

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By Stacie Prada

Each winter, darkness pervades my free time. Living in the Pacific Northwest, daylight hours seem to only exist on weekends and during lunch on weekdays. Dry, sunny days are less frequent, and spending time outside requires dressing for wind, rain and cold. While invigorating to experience, inclement weather provides encouragement to stay inside and find comfort from the elements.

It takes more creativity and effort to be active when the environment encourages spending time indoors. The draw of the sofa and screen time is compelling and comforting. I can justify that time and accurately describe it as productive by using it to rest, connect with others, learn, create, reflect and amuse myself. All are valid uses of time, and they only lack fulfillment if they sabotage my needs or goals. Usually the challenge is not the use of time but the amount of time spent on them.

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In My Opinion

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By Doug Ankerman

It’s a well-known fact multiple sclerosis is different for each individual. What pains you might not bother me at all. MS symptoms can be as unique as one’s personality.

That’s why writing about the “ABC’s of MS” can be a real toss-up.

What “ABC” means to you could be totally different from what I believe.

Your “ABC” could mean “Always Buy Crisco.” Maybe it stands for “Absolute Best Cat.” Or, short for “A Bulky Corduroy.”

Only you know your particular definition.

In my experience, the “ABC’s of MS” stands for “Any Bathroom Close?”

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An ABC Mantra: Always Be Curious

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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

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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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Ask the Expert – Mental and Emotional Health

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

Question: As we enter into the New Year, what strategies do you recommend for positive mental and emotional health?

Answer: Of all the questions I’ve been asked over the past couple of years this is probably the most difficult to answer… and to answer briefly. For some people, positive mental and emotional health comes more easily and naturally. It doesn’t require a strategy or a lot of work. Perhaps it’s the good luck of genetics or a positive and nurturing upbringing. But clearly for some people, happiness is more difficult and requires more work. For the latter and probably much larger group, it does require more work, and more effort, and maybe a strategy. It’s clear to me that the effort is worth undertaking!

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