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Kenai

By Kenai
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Kenai Bairn

Kenai

Posted
Posted (edited)

Thank you for bringing it back. 

Most of you have my facebook I think, but for those who don't I'm currently the frozen wastelands (aka north dakota) with my hubby and 3 year old son.  I've been diagnosed with Episodic Ataxia, which is less than fun.  As a result, I get to stay home and work on my writing while my hubby goes off to his dream job!  (software development).  He got into that line of work about six months after being discharged from the Air Force.

 

Edited by Kenai
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Kenai Bairn

Kenai

Posted
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Posted

The diagnoses was actually a really good thing.  It answered so many questions I had, and for a long time I thought I was going crazy. 

And really, if I'm going to have a brain disease, the type of Ataxia I have is fairly mild when compared to other brain diseases.  So in that regard, I'm lucky.

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Ren Runt

Ren

Posted
Posted
8 hours ago, Moonhawk said:

Love to see all the lovely people back! Welcome home!

Your now regretting this...ahahahhahaaahh Silly Hawk...NO HEN HOUSE for YOU!!! Silly other NLeders...We are BACK and you know you just missed it SO fess UP!!

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SoulDragon Runt

SoulDragon

Posted
Posted

Welcome back @Kenai, having something diagnosed is indeed a good thing, although many people misunderstand indeed and be saying "it's good that they can't find anything", it's not good when something is obviously wrong XD. I'm finally at the brink of having the doctors figure out what's wrong with me after so many years as well. Indeed at one point you start doubting yourself, thinking you might be imagining or making things up yourself.
Good to hear you're making it positive with being able to work on your writing ~huggles~

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Kenai Bairn

Kenai

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It's a genetic disorder that messes with the motor cortex. The docs throw around the term atrophy a lot.  The simplest explanation I've found is that in a normal brain the motor cortex sends out signals to the muscles, but its all the same signal.  My brain sends out different signals.  So if I want to talk, instead of my legs getting the same message, they get conflicting messages.  Basically anything in my body controlled by a muscle has the potential to mess up.

Some lovely side effects are:

Difficulty walking (I look like a drunk person)

Slurring of speech
choking/coughing uncontrollably

confusion

memory issues

sleep issues

temporary paralysis

easily angered  (brain shorts out when stressed and can't process emotions well)

muscle weakness (I've noticed this mostly in my hands/arms. I drop things a lot.)

spasms in the muscles

eye issues (sometimes my vision will go fuzzy for a few seconds)

Currently I'm still able to walk mostly.  I have a cane I use that helps on my lighter days, and a rollator (old lady walker) on the worse days.  I've found I do need a wheelchair for long trips, like a day at the zoo or something otherwise the strain makes me a worthless lump for a couple days. 

Because its episodic, not every day is like that. I have days where I"m perfectly fine.  The doctors tell me eventually I'll lose that, but for now its something I'm happy for. 

Things that can trigger an "attack"

Stress

Exercise (which made it really hard to lose all that weight but by god I did it!)

Caffeine

alcohol

heat/cold extremes (considering winters are -60 here, I"m pretty much a lump in winter)

 

Sorry if its too long, but you did ask. :P

 

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