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Showing posts from July, 2013

Shoes, Drop Foot, and MS

I love shoes. I have always loved shoes. I read somewhere that every woman needs to have at least one pair of red shoes in her possession and, being of the straight A mentality, I actually had five pair of red shoes at one time: red Keds, red leather sandals, red pumps, red clogs, and red flip flops. I am not your stereotypical girlie-girl, but I DO like my shoes. And I love expensive shoes, but my interest also gravitates toward style so the thrill of a Saturday BOGO event is not out of the question.

At one time I could not comprehend my colleagues reluctance to wear a nice professional pair of pumps to school. I did. And of course those pumps matched perfectly with purse and skirt. You know, we girls have our priorities.

Then finding the right shoe was exciting. There is nothing more sexy than a female calf pumped up with a 3 inch stiletto.

Well, that was definitely then.

Finding the right shoe for someone with a MS induced drop foot is more than exciting. It's a relief. I no lo…

The awful truth about MS and your diagnosis...

Having received and read a plethora (I love that word. It's fun to say.), of responses to my last post  I feel the need to share the one BIG and awful truth about MS. Diagnosed in 2001 six months after the birth of my only child and smack dab in the  middle of a failed marriage, I laid all of my faith in the medical professionals to "fix" me and my situation. AT the time I was under the care of an extremely compassionate neurological intern who did his best to ease my fears and take time to talk to me ANY time I wanted. That wonderful man has since moved of the area and is not available for me now. Any question he could not answer, he immediately researched an got back to me. I wish he was still my doctor today...

What I took from this experience, though, is that there ARE no answers. Every time I visit my neurologist, he asks me a thousand questions that I have answered over and over again only to discover that it is up to me to find the answer. I experiment with what I…

Let's be frank about MS.

Death from ‘Complications’ of Multiple Sclerosis: The Unspeakable Bits from a Life With MSByTrevis GleasonJul 30, 20132Comments When we first started writing the “Unspeakable Bits” blog, I resolved not to candy-coat the difficult parts of living with multiple sclerosis. I’d always intended to open the conversation about end-of-life and MS. I decided to broach the subject now, in the wake of the recent passing of our fellow “MSketeer,”Annette Funicello.

Social media sites erupted with kind words and remembrances of the actress. Soon, however, confusion began to set in as Disney’s press release attributed her death to “complications from multiple sclerosis.”  When a Canadian television video of her last days was broadcast as a remembrance, confusion became fear and concern.

My greatest fear when the dark days have me thinking about MS is that it might get “that bad,” but I must admit that I didn’t really know what that means. What does “advanced MS” look like?  How does MS get to “end stag…

Free download on Amazon by Cher'ley Grogg

I am SO excited to post fellow author Cher'ley Grogg here on my modest little blog. I will be reading The Secret in Grandma's Trunk today. So, get your own freedownload today!!!! I’m so glad to have this opportunity to share a little about myself and my children’s novel “The Secret in Grandma’s Trunk”, which is free to download from Amazon for a limited time.   The inspiration for the book came from my grandsons. I have three grandsons and a granddaughter. My granddaughter loves to read, but the boys do not, so I decided to write a book they would love to read. I knew it’d have to have strong kids in it, strong physically and head strong too.  The characters would all have to be realistic with problems and scuffles among themselves, it would have to be fast paced and full of adventure.  Plus my grandsons like sports and girls so I needed to put that in there as well. I couldn’t leave my granddaughter without someone to relate to so I gave the brothers in the story a female cou…

MS is a timeless, ageless classic.

I think this is my favorite picture of me. Taken by the talented Daniel McTaggart at McAteers, a popular diner in Fairmont, I really believe this image epitomizes the self-image of MS. You cannot see my face or a close up of my hands, so you have no idea of my age. The long hair suggests youth as does the denim attire. My hands are busy and my audience is engaged, therefore my business must be somewhat interesting. The upholstery on the diner stools is ripped and indicative of a timeless classic.
     Isn't this what MS is all about? Multiple Sclerosis is considered an ageless, timeless classic, but the treatment of the disease and the attitude of its victims is at war with this image. There needs not be anything remotely "classic" about MS. Current research and medical treatment have advanced remarkably in the last 70+ years, removing shame of this disease.
    We do not need to hide our faces nor disguise our identity. Claim it. Fight it.
This is My MS, My Story.


Swim Lessons: The Nick Irons Story

I am not a late night TV watcher, but sometimes I just find it difficult to crawl into a lonely bed when my husband is out of town. Granted, I am blessed with the presence of pre-teen son in the other room, but he's either engrossed in his virtual world of Mind Scape or soundly sleeping. Last evening, it was the former.

So...because the mom in me refuses to bed down before said son is at least pretending to sleep, I did some half-hearted channel surfing. And what a treasure I found.

Swim Lessons: The Nick Irons Story is a documentary chronicling his task of swimming the entire length of the Mississippi River to bring attention to Multiple Sclerosis. He did this for his father, who kept his MS private for many years.

What an inspiration!
Society tends to forget the family victims of such diseases as MS. Nick Irons does not have MS, nor do his brothers, yet this self-less act demonstrates the length(s) to which others will go in an attempt to create public awareness. It's a beau…

I love this song!

Lord, prepare me to be a sanctuary
Pure and holy, tried and true
With thanksgiving, I'll be a living
Sanctuary for You

Daily Reminders

We are all forgetful. I know that and with age this becomes increasingly worse. Kick in an added life altering disease, and you've got yourself starring in a daily game of Where Did I Leave My Mind.  So, my advice to you is to keep on top of your MS. Read about it, talk about it, write about  it. 
I compare this (loosely) to the journey into puberty and adolescents.What on earth is she talking about? I am sure you are asking yourself this question. What could multiple sclerosis possibly have in common with puberty? Nothing maybe, other than this is what my dear son is battling right now and I was just hoping that he could figure it out on his own.
Stupid Plan!
I remember THE BOOK that my mother handed my brother and me when it was time for our big talk. I read obediently to myself and then I helped my younger sibling with a second reading. Our next assignment was to go to Mom with questions/comments/concerns. Tracy, my brother, had no problem with that. I, on the other hand declined a…

Not a pink person, but that's okay.

I am not a "pink" person, but am not particularly offended by the color, so I am at peace with this blog design, for now. I guess I just need to accept the things I can't change.

Technology and I just don't get along!

I waste more time trying to use what is supposed to make life easier and adding to a stress level that is my MS goal to eliminate. Because I feel the need to step up to the plate and utilize the 21st Century opportunities before me, I finally erased the downloaded image on the front page of this blog, but I am now sadly disappointed in the current appearance. Recently Cher'ley Grogg asked me to host a blog entry of hers and I want it to look pretty on my post. Hopefully I will have things under control by the time  I post her request.
One thing I have learned about having MS (as with any other life altering condition) it is best NOT to waste time engaging in senseless activity when there is meaningful life to be living. Visit with family, call a friend, play with your children, converse with your pet, take a walk (physically or on the pages of a good book).
My routine this morning has been:
Talk to my computer.
Shake my fist at the computer.
Call computer bad names.
Ask computer f…

Find your Sanctuary

This morning as I lye in a restorative Starfish Pose (and it looks like exactly that) I reflect on my weekend spent in my Sanctuary. Everyone needs a Sanctuary.
      Last week I celebrated a physical milestone of walking 3/4 of a mile without "dropping"  my foot. My attitude at the time was "Bring it on, MS!"
      Twenty-four hours later, the rebellious MS fought back and I found myself lucky to walk the short expanse from the living room to the kitchen (and my house is small) without falling. My balance was skewed, my vision eschew and that MS tremor had returned to my writing hand. I let MS have its way for a few hours, easing it into a false sense of control because sometimes the best defense is to allow your opponent to think it has won.

      My MS didn't realize that we would be spending the weekend in my Sanctuary. Bemis, West Virginia, undoubtedly one of the state's many best kept secrets, is where MS does not exist. In Bemis, I have fallen …

Exercise and MS

Yesterday I celebrated a milestone in my MS exercise routine and today I am wondering if my legs will ever obey my commands again. Too humid to walk outside this morning, I chose instead to seek the ministrations of this week's DVD trainer Leslie Sansone (I employ a different DVD professional each week for variety). Big mistake. I normally do my DVD video workout in the evening after my muscles have had the opportunity to practice cooperating for several hours. Slow and easy is my morning ritual, but this morning Leslie took me on a fast and furious ride. Thinking that a little yoga would calm my jittery limbs, I turned on Rock My Yoga with Sadie. I never finish her routines but just like feeling her "groove". Well, Sadie left me on the carpet with a wrenched back and wishing it was time for my nightly glass of vino.

As with MS, life just continues to throw us these little curves; so I cannot consciously view My MS as any different than a normal day. We never know what l…

My MS, My Progress

This morning I celebrated a major milestone in my summer Fight Against MS. Hold on to your hats, it's a BIG one!
I walked from my home to the school of my employ and back without "dropping" my foot until I reached my backyard. That's about a half mile journey, across a major bridge and up a steep set of hillside steps. In my youth, pre-MS, I would have accomplished this feat in minutes, running part of the way. Today, it took me nearly 20 minutes and I relied upon my walking stick for the majority of the trip. None of that matters. What matters is that I DID it! And then, after a short rest, I actually rode my trike (two-wheeled vehicles still daunt me) down the street and back.
Go ahead, laugh at what may seem minute accomplishments, but this girl is psyched.

New MS Study/Very interesting!