MS Awareness Week 2020

Sorry I’ve been quiet for so many months! I have a lot of catching up to do, as many changes have come over that time. But this is a week I had to step in. As I prepared to write an article to submit to our area newspaper, I thought of different angles I could take when making others aware of MS… my favorite past article compared it to an Ivanhoe’s shake, and another had looked at a house with electric issues, but my friend Anne had a clearer thought. MS doesn’t make a lot of sense to her, so how about a basic Q and A session? She was right, so I submitted this Marion Chronicle-Tribune last weekend. And they published it last Tuesday – wow! So here it is for you to read also.                   

March 8-14 marks “MS Awareness Week,” but why should we be aware? According to the National MS Society, nearly one million people in the US live with multiple sclerosis. This illness doesn’t always look or act the same, and you likely have friends or neighbors with MS, unbeknownst to you. I speak from experience. In 1999, we were preparing to move to a different house when we had a telling conversation with our retired neighbors. We had lived next door since 1997, but we didn’t realize the gentleman had faced MS for many years.

When I received my teaching license in 1994, I did not know that a 1997 diagnosis of MS would offer a whole new curriculum to teach from, at least for one week each year. I’ll answer here some common questions I receive:

  1. What causes Multiple Sclerosis? Many (multiple) scars (sclerosis) are left when a confused immune system attacks myelin, the white protective coating of the nerves (and the “white matter” in the brain). When the myelin is damaged, scars are created. Why the immune system misbehaves this way is another question, and the answer is unclear, likely including genetics, environment, and at least a dozen other factors. Roughly two thirds of MS patients are female the majority are Caucasian, but examples like talk show host Montel Williams show that every case is unique.
  2. How is MS diagnosed? If a physician suspects MS, an MRI of
    brain MRI
    MRI of Angie’s brain

    the brain can show scars in damaged areas. Other tests involve vision, manual dexterity, coordination, and memory.

  3. How old are patients when they are diagnosed? Though it is usually first diagnosed in a patient’s twenties or thirties, pediatric MS is less common, starting around the teenage years or earlier. If a diagnosis first comes in a patient’s forties or fifties, they sometimes realize that earlier symptoms had been ignored or misdiagnosed.
  4. What are common symptoms of MS? Symptoms vary from person to person, but they often include fatigue, lack of coordination, visual problems, and weakness. Some patients only ever have one or two relapses, and it doesn’t come back. The most common disease course is “relapsing-remitting,” where symptoms flare up then improve, though not completely returning to the original level. “Progressive” MS does not vary in this way.
  5. Does temperature affect a person with MS? Yes! Before MRI machines could assist with diagnosis, a patient believed to have MS would enter a hot tub. If he or she became numb and couldn’t move arms or legs, the diagnosis was certain, and cooling down again restored the ability to move. Hot weather is generally not desirable for those with MS, and air conditioning may not be a luxury, but a necessity.
  6. Is there a cure for MS? No, but there are currently seventeen different medications that help slow or decrease its effects. (When I was diagnosed in 1997, there were three.) Until quite recently, only relapsing-remitting MS could be treated with medication, now “progressive MS” patients (which previously had no treatments) have at least two options. I know more about this than I may wish, as I have taken seven of those medications over the past twenty-one years.

Today, new discoveries are being made, and a cure for MS grows closer each day. Until then, the second week in March will remain a time for me to become a teacher again, helping others become aware of MS. If you wish to learn more, visit the National MS Society or MS Association of America.

About the author: Angela Knight lives in Upland with her husband and daughters. Diagnosed with MS in 1997, she was part of an area support group for several years.

MS Awareness and Ivanhoe’s shakes

ms awareness weekI composed the following article for our small local paper, and it’s an updated version of my 2011 piece. I think this milkshake analogy is my favorite way to explain how MS doesn’t always look the same. 



MS Awareness Week, March 5-11

           As spring nears, March again brings “MS Awareness Week.”   I find this interesting, as I experience 52 of these each year, but is nice that a bit of time is set aside to share information with others.  Over 400,000 individuals in the United States face this challenge, so this week offers the chance to shine a light on information that may be new… or misunderstood.

As our friend “G. I. Joe” used to say at the end of each cartoon in the 80s, “Knowing is half the battle.”  Knowing what MS is – and what it isn’t – is helpful in gaining an understanding of this illness.  So what is multiple sclerosis?  It is an autoimmune disorder, meaning that the otherwise helpful immune system is affecting something it shouldn’t.  In this case, the white blood cells are attacking several (multiple) places on the coating of the nerves.  These attacks create scars (sclerosis).  Sounds simple, doesn’t it?  Not so fast.  Consider the nerves that run through the body, not to mention the large bundle of nerve tissue that we call the brain.  In fact, using MRI technology, scars viewed in the brain often lead to a diagnosis of MS.

ivanhoe shakes            If it is anything, MS is unpredictable.  Scientists are still uncertain as to the initial cause of this disease, there is not a certain pattern that it always follows, and it can vary widely from one individual to another.  The best area analogy I have found is the menu of Upland’s Ivanhoe’s restaurant.  Hoe’s is largely known for its 100 varieties of shakes and sundaes, and MS can vary just as much, if not more.  Some are diagnosed and may have a “vanilla acapella,” with no additional or noticeable symptoms after the initial onset.  Others, though, experience a shake not even on the menu, with ingredients they never liked to start with.  Symptoms can include fatigue, loss of coordination, heat sensitivity, slurred speech, cognitive problems… and I’ll stop there, as this is a bit disheartening.

Besides knowing what MS is, it is equally important that we realize what it isn’t.  MS is not a death sentence: though chronic, it is not fatal.  MS is also not the sign that somebody has lost his or her ability to be productive.  Every individual, like those beloved gourmet shakes, is different.  The last two homes where we lived had us next door to an individual with MS, something I certainly didn’t realize at first.  You see, MS is not obvious.  Two thirds of those diagnosed with multiple sclerosis are female, but this means that many are also male.  MS is also not age-specific.  A few are diagnosed as young as six, some in their 50s or 60s, but many in their 20s or 30s.  Many are from Western European ancestry, but this also varies.  And about a fourth of those with MS end in a wheelchair, but three fourths do not.

So why should we be aware?  More and more medical breakthroughs are on the horizon.  There are currently fourteen medications on the market to help slow MS progression, and a cure is closer each day.  In the meantime, patience and understanding are key in helping support our friends and neighbors with MS.  Now you know, and though simply knowing may not be half the battle, it is certainly a step in the right direction.

Angie Knight was diagnosed with MS in 1997 and lives with her husband and daughters in Upland. Visit her “Invisible Issues” blog at https://angieknight.wordpress.com .