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Tag Archives: Dystonia

I’m heading back to Lafayette, La, for my next appointment with my neurosurgeon. She’s the best in the state (far better than the local doctor with which I’ve dealt.) I call him Dr. NO as in, “There’s no way I’ll see him again. I’ve come up with other terms of endearment for him, but cannot say them here.
My current doctor has an eye for details and a blunt but truthful way of explaining things.
Two words that scare the $@#% out of me are, “permanent disability,” which she drove home repeatedly during last month’s visit.
She doesn’t pull any punches. That’s one of the things I like about her. (Still doesn’t mean I like having a permanent disability.
I still hold on to hope, but only because of the support and loving encouragement I get from my dear friends and family.
I’m not going to name them, but if you’re reading this, you’re likely one of the few about which I’m talking. So, thank you. I love you.. More than you know. You see past my Feeling Twisty days and treat me as if I’m not tripping over my pretzelish-shaped body.
Today’s visit will include looking over images from my MRIs, specifically, the basal ganglia region.
I’ve tried reading the images, but can’t tell much from them. I do like this image, though,

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I think I look like a species that The DOCTOR might come across during his travels through time and space.
I’ll keep you posted on what’s up next for me.
Again, thank you for your thoughts, prayers, and words of encouragement.
As I deal with dystonia and it’s alleged permanency, my thoughts and prayers are going to my Uncle Red and the whole Francis family. He has Parkinson’s Disease and is very near passing. I love you Uncle Red and your children.
So, to summarize: dystonia sucks, permanent disabilities suck, Parkinson’s Disease sucks, and saying goodbye to loved ones sucks.
But for the support I continually receive I would say my life sucks.

Peace,
Mike
P.S. Please excuse any rambling and misspelled words. I’m exhausted and I’m not wearing my glasses.

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I’m participating in a mud/obstacle run (limp/walk) this morning. I’m nervous! I haven’t done anything like this since the dystonia symptoms started appearing a few years ago.
ReALLIEty Challenge

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By the way, here are couple post-mirror-tumble photos.

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Usually the #dystonia symptoms calm down enough so I can sleep at least several hours. Since I’m up anyway, I shaved off the too white beard. Only a few bloody parts with a twitchy hand.

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I’m in Pineville, Louisiana, for a four-day teacher training program. Two more days to go!

Today was a much better day than yesterday. We had to leave Lake Charles so early yesterday to make it to the conference on time. When I’m tired and / or upset about something (Tip: get meds before leaving home) the dystonia symptoms erupt more quickly and painfully. Fortunately, the encouragement from my friends and family, plus a good night’s sleep made today much better.

If you follow me on Facebook (Mike Brignac) then you already know about the battle I had yesterday with Pineville’s Walmart pharmacy. Well, one guess about the status of my medicine….
Okay, I’ll tell you. I have not gotten them yet. The pharmacy tech candidate (Yes, same one from yesterday) blames the Lake Charles Walmart for the foul up. I really don’t care who’s fault it is -although we know it’s Pineville’s-I just want the medicine.
I’ll check with the local pharmacy again later.

Thanks to my wonderful family and my friends for spreading the word about this new blog. It’s not perfect, and I don’t want pity (I give enough of that to myself). I just needed a way to vent while spreading the word about dystonia and the need for continued research for a cure for this and other neurological movement disorders.

I’m heading back to chopping and bagging limbs where I cut my right index finger while sharpening my machete. It’s tough work. I live an hour from the Gulf of Mexico, so I have to put up with intense heat and humidity. Having dystonia means I need to get as much work done as I can before I over heat.

My Generalized Dystonia symptoms will make it to hard to continue after a few hours.
My goal today: NO MORE CHOPPING MY FINGERS WITH MACHETE!

By the way, please follow me on Twitter
@mikebrignac
It helps me to be able to talk to people who have dystonia or know someone who does.

Peace

Generalized dystonia and sharpening machetes don’t go well together.

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I hate nights like these. Dystonia causing so much pain. It wears me out, but keeps me from sleeping.

Please help us raise awareness of dystonia

“You don’t die from dystonia, but you want to.”
Thanks to CNN for covering this not-so-well-known movement disorder.
CNN on Dystonia

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