MS Maze

Multiple Sclerosis (MS)… some call it the MonSter, or the Beast. It is a demyelinating disease, an invisible illness, a mysterious ailment subject to many misconceptions. Who, what, where, when, why, how… all good questions.

That’s why the Multiple Sclerosis Foundation recognizes March as National MS Education & Awareness Month, and the National MS Society designated March 8-14 as MS Awareness Week.

WHO gets MS? About 2.5 million people worldwide…

WHAT is MS? MS is a neurological disease in which…

WHERE is MS most prevalent? Northern latitudes farther…

WHEN do people get MS? It is difficult to pinpoint when MS begins, but diagnosis usually…

WHY do people get MS? That’s the big question! The cause…

HOW is MS treated? There are several…

Throughout the month of March, I will offer glimpses into my own life with MS in Care2 Healthy & Green Living. While there is no such thing as a typical case, those who are familiar with MS will nod in recognition. If you are not familiar with MS, please allow us a few moments of your time during MS Education and Awareness Month, and check back here in Care2 Causes in the weeks to come.

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Who Gets MS and Why

Photo: U.S. Centers for Disease Control and Prevention

Multiple sclerosis. Is that the disease that puts you in a wheelchair or leads to a nursing home? Montel Williams… Richard Pryor… Annette Funicello… all names associated with MS, and isn’t there a mountain climber or two that have it?

Confused? You are not alone. That’s why the Multiple Sclerosis Foundation recognizes March as National MS Education & Awareness Month, and the National MS Society designated March 8-14 as MS Awareness Week.

Throughout the month of March, I will offer glimpses into my own life with MS. While there is no such thing as a typical case, those who are familiar with MS will nod in recognition. If you are not familiar with MS, please allow us a few moments of your time during MS Awareness Month.

A Diagnosis Odyssey

It began with a seemingly benign but persistent tingly feeling in my upper right arm. It was the kind of thing you tend to dismiss and certainly not the kind of thing that makes you rush out to see a doctor.

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Multiple Sclerosis Awareness Month: A Diagnosis Odyssey

Photo: copyright WebCamp One LLC

“If you’re going to use a cane, use a CANE!” I heeded that advice and never regretted it.

I was in my early 40s and my multiple sclerosis was as yet undiagnosed, but walking was becoming a problem, especially in public settings. My awkward gait and lack of confidence made me feel rather conspicuous, but I was not thrilled about the prospect of using a cane at my age.

We’d picked up a cheap metal cane at a drugstore for a trial run, soon realizing that I would actually look and feel more confident and natural with a cane than without. But that cheap metal cane was not exactly the image I wanted to project.

So the online search for a more presentable cane began. Still somewhat self-conscious about the prospect, I sought out canes that would blend into the scenery. I thought that my cane should be useful, but not particularly noticeable. I wanted a boring, fade-into-the-background look.

That’s when my husband stepped in. “You’re looking at this thing all wrong. If you’re going to use a cane, use a CANE! Don’t be embarrassed by it… make a statement with it. Own it.” Wise man, my husband.

That’s how I ended up at a website called Fashionable Walking Canes. The assortment of walking canes and walking sticks for men and women evoke the style of a bygone era, the cane not only a mobility aid, but a fashion statement.

My search for the perfect ladies’ cane ended when I spotted a red paisley adjustable folding cane. That’s right — red paisley. I knew I could forget about fading into the background with that one, but like the man said, “get a CANE!”

That cane is still my favorite, although I’ve since added others to my collection. And I do get noticed — not because poor pitiful me has to use a cane, but because people stop to compliment me and want to know where they can get one.

Visit the Fashionable Walking Canes website: www.fashionablecanes.com or on Facebook.

Disclosure: This is a compensated post — but a 100 percent true story.

Multiple sclerosis is the ultimate player. First you see it, then you don’t. If you are confused about MS, you are far from alone.

First, what it is not: multiple sclerosis is not the same as muscular dystrophy or cerebral palsy. All people with MS are not in wheelchairs. It’s not a psychological problem.

So what is it?

MS is a neurological disease in which lesions form in the central nervous system, interrupting the transmission of signals to the rest of the body…

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11 Basics to Understanding Multiple Sclerosis

What is a typical case of multiple sclerosis like? The newly diagnosed usually ask what they should expect from a life with MS but typical, when it comes to MS, is hard to define.

One thing is clear — life with multiple sclerosis is anything but predictable. MS doesn’t come with a road map, a GPS system, or a set of directions. There is no forgone conclusion — and despite the uncertainty, that is good news.

Plenty of people will tell you horror stories of life with MS, or of folks with MS who climb mountains and run marathons. There is truth in all of it, but none of it necessarily will reflect your experiences or point to your own future.

Trying to pin down the typical person with MS is like trying to pin down, well, the typical person with MS. We are as varied in our physical condition and our outlook on life as the rest of the human population.

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A Typical Life with Multiple Sclerosis

The word “pseudo” can be very misleading. The dictionary defines pseudo as “pretend; false or spurious; fake, artificial, sham; not actually, but having the appearance of.”

In the case of MS, you can disregard the words pretend, false, spurious, fake, artificial, and sham. A pseudo-exacerbation is not an imaginary event or a psychological disorder. It is not a cry for attention, and most assuredly is not fake.

It is not actually, but has the appearance of an exacerbation — along with all the very real physical symptoms…

What’s the difference between a “true exacerbation” and a pseudo-exacerbation?” Read this post in its entirety:

Pseudo-Exacerbations in MS: Grounded in Reality

Multiple sclerosis is a complex condition that can involve dozens of symptoms. Because MS takes different forms and varies so greatly from person to person, even those of us who live with MS have trouble with the terminology.

Understanding frequently used terms is helpful not only to us, but to the people who care about us and want to understand. These are some of the basic terms that we’re apt to hear on a regular basis…

Deciphering MS Speak

Some of the most common complaints of people with M.S. are fatigue, numbness, and weakness – things that cannot be seen and often cannot be understood by those who have not experienced them at high levels. These seemingly benign symptoms can necessitate missing work, school, or social obligations, causing chores to pile up and misunderstandings to arise.

That’s enough to contend with, but what if your family, friends, and co-workers don’t really believe you? What if they think you are faking, or taking advantage of your diagnosis?

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Dealing with Invisible Symptoms of M.S.

Summer is in full swing, and along with it comes backyard barbecues, outdoor recreation, and long sunny days.

The joys of summer are many, but for some people with multiple sclerosis, summer’s heat and humidity can make it even more difficult for already damaged nerve fibers to transmit electrical impulses, resulting in an exaggeration of symptoms, which may include fatigue, dizziness, and extreme weakness.

This kind of temporary flare-up of symptoms is called a pseudo exacerbation because, although the symptoms are uncomfortable and frightening, there is no true neurological damage taking place.

Read this post in its entirety at Care2.com’s Healthy and Green Living: 

Staying Cool with M.S.

Suddenly you feel an intense tightening around your chest, along with pain and a burning sensation. You clutch your chest, awash in fear.

If you have never had this experience before, you wonder… is this a heart attack… a panic attack… an asthma attack… and you will definitely want to contact your physician.

But if you have multiple sclerosis and been through this before, you’ll recognize this as the mysterious MS Hug… the Chest Hug… the Girdle… otherwise known as dysesthesias.

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The “MS Hug” Demystified

I admit it — I don’t watch Oprah. But so many people told me about Montel Williams’ March 17 appearance on her show that I had to get my hands on a copy. I heard it was an extremely powerful piece about multiple sclerosis.

Immediately, I was startled by Montel’s outpouring of raw emotion as he spoke of his MS progression. Repeatedly breaking down in tears, the former marine and all-around tough guy described his road to diagnosis, battle with depression, suicide attempt, and chronic pain. At times I completely forgot that I live with the same disease, so drawn in was I by his circumstances and brutal honesty.

Weeks later, still haunted by the segment, I decided to write about it. My intention was to point out the most unusual and intense way in which MS was portrayed — highlighting one man’s reality with this disease.

I also wanted to point out a few factual errors. Oprah didn’t seem to have much knowledge about MS, nor did she take charge of the interview. The doctor who appeared on the same show made some odd statements that truly demand clarification. A follow-up show with an MS specialist is definitely called for.

But a funny thing happened on my way to writing that article. I became completely sidetracked by reading the comments on…

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The Montel/Oprah M.S. Misfire

Larry King, when interviewing the late Christopher Reeve, asked, “Do you think about walking?”

Reeve replied, “Oh, absolutely. You know, as a matter of fact, in my dreams — I have never been disabled in my dreams, so my subconscious insists that I am whole, and I follow my subconscious.”

Our minds and our bodies, while inextricably intertwined, can maintain separate realities. That’s what allows we humans to imagine the unimaginable, to create worlds of our own making.

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MS Fears in the darkness of night

Lisa Emrich, writing at The Health Central Network’s Multiple Sclerosis Central, came up with a fascinating piece about multiple sclerosis and personality. If you’ve ever been told that its “all in your head,” you are not alone.

Read Lisa’s post:

Multiple Sclerosis: Psychosomatic, Neurologic, Mood Disorder, or Personality?

Swish… swish… swish…

My slippers make a swishing sound as I slide my feet over the bare wood floors of my home. “Pick up your feet!” My mother’s admonishment echoes through the years in my head. She wouldn’t say that to me now, of course. It isn’t laziness that causes me to drag my feet. It’s multiple sclerosis that makes it all but impossible to fully lift my feet off the floor when I walk.

Five years after diagnosis, I’m still fortunate enough to have relapsing/remitting MS rather than the progressive type. In a previous post, I rejoiced in new research that reversed disability in early-stage MS patients…

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Stem Cell Research: For or Against

This week’s episode of Fox’s American Idol undoubtedly went a long way in helping the general public understand multiple sclerosis and its mysterious symptoms. Famous names have a way of bringing attention to illness and disability.

David Osmond, son of Alan Osmond (the oldest original Osmond brother), took part in this summer’s first round of American Idol auditions. He also used the occasion to publicly reveal that he was diagnosed with multiple sclerosis three yeas ago. His father, Alan, also has MS.

He explained that until shortly before the audition, he was confined to a wheelchair. Referring to MS as a “roller coaster,” he put a very personal face on the disease that could “flare up, and I could go back to that wheelchair…

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American Idol Spotlights Multiple Sclerosis