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This is how I feel

Why do we pretend so much? Is it pride? Is it because it' easier to project a more "normal" existence than to bow to the demands of this ridiculous disease? 

Or do we live in a contestant cloud of denial? If I ignore it long enough it will go away?

For several weeks now I have been experiencing a weird, weird, weirder than weird symptom of spasticity (I must have invented that word, 'cause every time I type it, I am reminded to correct it. Oh, well...)or cramping or whatever in my right foot. Th toe right beside the big one keeps curling under until it has begun to control the entire right side of my body. Whatever that toe wants, it gets. 

There are times when it feels that I am actually walking on the wrong side of said appendage. I am beginning to believe that this is mostly due to the use of my AFO. It never happened until I insisted on wearing that pretty pink leg
every day, all day.  (Of course that is NOT the shoe I wear with it. If you want to talk shoes and AFO's, check out some previous posts. I really appreciate all the insight I can get.)

Needless-to-say, I am not enjoying this new aggravation. My neuro prescribed Baclafan, but I can only tolerate half a dose if I am to remain alert during the day. And, yes, I take it at night. It kinda helped at first, but I not seeing any advanced assistance.

My next plan? I am going to revisit my earlier interest in the Walk Aid . 
It looks like some insurance companies have begun recognizing this device and maybe mine will offer some coverage.
 Have further questions? Please call 1-877-4HANGER, or speak with your local clinician at your Hanger Clinic or contact Care Credit for more information.

I'm calling them today!

I've been thinking about juvenile MS a lot lately. Probably because my current writing project involves a high school- er diagnosed with the MonSter not long before her freshman year in high school. We think of MS as an old person disease, even though many of us are diagnosed between the ages of 20 and 50 (No,kids, that's NOT old.) 

Meet Breea Ramskill, a remarkable young lady whose story is an extreme example of early on set MS. My biggest question for Breea doesn't have anything to do with the physical part of MS, although THAT certainly appears to be her biggest issue. what I want to know is her reaction to other people's reactions to her apparent physical issues.

For example, I was accused of being publicly intoxicated many times before an official diagnosis.

How do teens deal with this rude and callous judgement?

According to the Children's Hospital of Philadelphia, "Multiple sclerosis affects about 1 in 1,000 people. About 450,000 people in the United States and Canada are living with multiple sclerosis. Although the peak age of diagnosis is between 20 to 50 years old, approximately 2.7% to 5% of people are diagnosed before the age of 16, with the majority of these cases diagnosed after the age of 10.

This may not seem like a very big number, but it's big enough.

In November 2018, my son was treated for something called Miller Fisher Syndrome. It, too is a neurological condition, mostly associated with previous infections. My fear is that he is now targeted to develop multiple sclerosis. He now  has two strikes against him. Since his vitamin D level is chronologically low, I worry (much more than his teen age brain) every day.

I do not want him to live in this iron web of MS.

That's enough for today. Have a wonderful week!



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Have a pint in honor of MS Awareness Month. Author Lisa McCombs will be present at 1PM and will read from her award winning book I Have MS. What's Your super Power? at 2PM. A percentage of book sales is donated to the National MS Society.

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I'm back just in time for my MS Walk

Hello, hello, hello!!!!!

I'm back!

It has been a very long week without my computer. Yes, I know, anti-techie me, I really said that. I never realized how much I depended on my pooter until I didn't have it any more.

I was unable to review books on Readers Favorite. 

I couldn't address emails properly.

I couldn't write this blog and I really, really missed that.

I couldn't play my Facebook games or look up ridiculous trivia for which I only care.

I DID knit a lot, though; which means I binge watched a lot of Netflix (Have you seen The Chilling Adventures of Sabrina?); which means I snacked a lot; which means my jeans no longer fit comfortably...

Oh, well, it is what it is...

Isn't it interesting how all the elements of our daily life often fall into these unplanned yet strategically organized patterns? :Some good. Some not so good.

Well, I find that is exactly how it is with multiple sclerosis. MS is NOT predictable even when we try to force it's awkward shape into o…