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.

a late poem… for my Knight/Charioteer

My Knight (tacking on even though National Poetry Month has passed)
By Angela Knight
A “knight in shining armor”
is who the stories say
will ride atop a charging steed
to chase my fears away.

But what if his armor loses shine,
is dented on its ride,
if he slips from his mount
as it falls out of stride?

No, my Knight can leave that weight behind,
a light coat will suffice –
a t-shirt, jeans, and dusty boots,
they need not be precise.

My Knight is just the perfect mix
of hero, friend and more-
this “Knight in faded denim”
is forever my amor.

Twenty-five years have come and gone,
we’ve meandered, hiked, and walked –
sometimes sat, sometimes tripped,
then we stopped to talk.

Decided feet could use some help,
Wheels could add support.
How lovely to join in this new way,
It could be our special sport.

So now my Knight can take my hand,
Then push with style and cheer…
You see, my Knight has now become
My Wheelchairioteer.

 

(Dedicated to my dearest Knight in Faded Denim… I love you, T.R.!!)

 

Follow this link to read about T.R.’s special encouragement to other “Wheelchair Charioteers – I look forward to watching this spread. I’m so proud of him!!

Poetry of Disability

As Disability, MS, and other similar Awareness Months draw to a close, I thought this would be an appropriate time to share a in a different way. Describing how MS really affects me can prove difficult, outside of a list of concrete symptoms. So how does one communicate this? How about poetry?

National Poetry Month begins on Monday, so it’s time for poeming and pondering.


“Scars” by Angela Knight

MS

Multiple Sclerosis.
Many Scars.

a Misbehaving System is what I call it.
You can call it what you wish.

Cells that should kill germs harm others instead, and what do they leave behind?
Scars.
What do they take away?
Energy. Control. Ability. Freedom.

“It’s all in your head,” you say.
And I agree.

With scars in my head,
I sometimes wonder what’s left.

Besides scars.

But then I hear an inner voice, one of assurance:

“Scars are not alone. When you look, you’ll find unexpected gifts:
The gift of Empathy to offer an ear to hear of invisible pain, filled with frustration and hard to see with the outer eye.
The gift of Peace beyond understanding, easier to feel when busy-ness is forced aside and stillness found.
The gift of Love you’ll feel as dear ones see through and beyond your scars, and the truest love, shown through one whose scars bring new life.”

MS

Multiple Sclerosis.
More than Scars.
That’s what I call it.
You can call it what you wish.

“That week”…

What am I talking about? Well, “MS Awareness Week,” March 10-16 2019, officially marked that week, though it seems repetitive to me. Every day, week, month I face symptoms of what has become my continuing journey. (Even though I managed to post this one day after the week ended, my daily  awareness level hasn’t changed. I just need to manage time more effectively.) This journey started for me in June 1997, and the scenery has changed along the way.

Angie MRI 2006
2006 photo of one slice of, Angie’s brain, scars included

For any interested in reading about the said “scenery,” I invite you to a 2017 post, “So what exactly does MS look like?”. When an otherwise functional nervous system is dinged around by a confused autoimmune system, it can wreak a bit of havoc. Not fun, and mostly invisible to the outside observer. My husband also posted about this particular week at his own blog, Freelance Knight. (Thank you, T.R.!)

Newer information has just been released by the National MS Society. I’m less alone than I used to think. Rather than 400,000, it is now estimated that almost a million people (942,000) are currently diagnosed with MS in our country. And one thing I know is true about this is that no two are alike. One excellent example of this is the courageous interview given by actress Selma Blair. I appreciate her willingness to be transparent and public with her struggle!

Though MS has painted paths of life I had not planned, I do know that faith and family continue to be key. Thankful for medical progress and assistance each day, I look forward  to seeing how God plans to use what I do  have, both joys and struggles. Thank you for joining me for a moment on this journey!

Not sure I’m “Cool,” but I can try…

Be Cool. We Are!” An intriguing theme for Indiana’s Disability Awareness Month. I do govhol dismonthencourage you to take a look at this message, shared by individuals with varying struggles. Governor Holcomb kicked off the month with support, and I appreciate the words he shared. What does it mean to be “cool”? To be “comfortable in your own skin,” he suggests.

As we face disability, either through experience or observation, it inevitably causes us to feel uncomfortable. As I have gone from starting to use a cane fifteen years ago to gradually using other methods of physical support, I have gradually learned to be comfortable in my own skin, so to speak. I first felt that my cane flashed neon lights, then that a walker screamed of weakness. But as a person facing disability, I have certainly learned the importance of helping others like me feel less awkward. A smile and positive words can work wonders. My cane didn’t glow, my walker didn’t scream, and my wheelchair was just fine.

Some disabilities appear outwardly, others are less obvious. When they appear more obvious, I appreciate the Governor’s Council’s advice: “Be Cool. We Are.” Sounds like a good plan! And for those with disabilities that are more hidden (but just as real), this theme may give reason to contemplate… what hidden limitations are faced by those around me? Whatever they may be, I’ll try to be cool.