Wednesday, September 25, 2013

so, yeah....the vest works....

no shit.

it really does.  i mean, i aint running...i aint jogging....

no, alas.... my victories and gains from this device are more along the lines of:

1.  i can stand without falling.
2. i can raise my arms above my head, while standing, and do not face plant.
3. i can walk, awkwardly, without a can for short distances...oh, and did i mention? ...without falling.
4. i can march in place.  (yeah, my legs were just a shocked as i was to be marching in place)

theres more, but i am over the whole listing thing.  i am just gonna spew it out.

so, we arrive (after 7 fucking long hours in a godddamn prius) my legs and body were sooo cramped, very tight leg muscles. ugh. tin man needs the oil can....
i get in the room with Craig for the assessment.  I have to demonstrate how i stand from sitting, how i stand, how i walk, a little evoked potentials, etc.

then he tests the lumbar belt, and asks me to stand.  and honestly, even though while i was attempting to stand, as standing from sitting can be challenging...before i knew it, i was standing.  didnt use my hands, not at all.
Glenn was sitting there, and saying WOW....
so, he asked me to stand comfortably...try to look straight ahead, instead of at the floor....try not to hold onto anything....
while i couldnt stand straight, look straight ahead without holding on to something, what i COULD do was stand straighter, with less visible spasticity.  nice.

then, he put the vest on me, asked me to stand, then proceeded in pushing me in different directions to test balance. at one point, i came crashing face first into his glasses. yahoo.

then, he started weighting me. trying small weights in strategic points on my shoulders, chest, torso, low back, etc...

all the while pushing me.

...finally, he could push me, and i could catch myself and regain my balance. yep. no fucking shit.

and, i talked to the guy who made my vest...i already have my own vest.

I saw craig for the assessment on tuesday, he ordered my vest, and we went to pick it up that following saturday.  AND, craig was nice enough to meet us half way....

uber nice.

so, summary:

while walking is still very difficult, it is easier and less scary.  I am very anxious about falling, and this vest gives me a feeling of security. I feel much more centered.
I have wicked bad spasticity, drop foot, and numb feet...all of which are not aided with the vest...but, and this is a big BUT, i am seriosuly hopeful that with could become even easier to walk.

I figure, like crutches. when you first break a leg and get crutches, you can look like an idiot using them...and they are awkward, and foriegn....
but, after a month or so, you are a pro....a fucking crutch master....they become an extension of you....

so, hopefully, in a month or so....i, too will be a vest master.  i wont even have to go and train in a swamp with a little green guy...

well....i am not succinct, and i wander around in, hopefully you can understand my jumbled crap blog post.

the vest shows marked improvement in my mobility....

there. the the point.

oh, p.s.

i played mother fucking CROQUET last friday!!!!!!!!!!!!!!!!!!

i know, right?  (it probably wasnt pretty or graceful...but i did it.  came in second because my brother had some hidden croquet skill.......................  two games, actually.

if anyone reads my shitty little neglected should get assessed for the vest.

Thursday, September 12, 2013

To blog or not to blog

Obviously, to not much blog...

I did, however, want to post about something I usually am bereft of....

That would be 'hope'....

Sure, any cripple that has been ravagely fucked by multiple sclerosis can lament about a hope for the cure.  Well, duh.  My 'first star I see tonight' wish is always an MS cure.

This new hope I have has got me all bunged up.  I am a pragmatic chick.... This is the way it is...I see it for what It is.

1. I have a chronic illness that is destroying protective sheathing around the nerves in my brain
2. This myelin destruction has seriously fucked my body up, robbed me, jypped me, screwed me out of a 'normal' life...
3. Without a wall, an arm, or a cane...I will fall on my face...hey, sometimes I even fall on my face with those things.

(there is plenty of other shit to compile on the above list, but I am abandoning that ship) its depressing...

So, fuck it. Let's talk about HOPE.

Currently, hope is blooming inside me in the form of a counter balancing weighted vest.  A physical therapist designed this shit a few years ago, and so far, they have an 80% success rate with improving balance.  For ms patients, but not limited to.  In fact, they utilize this vest for patients with Parkinson's, vertigo, old age, and ataxia.  (fuck ataxia...I looked that up, and what a horrible, shitty disease.)  life is hard enough, but then our brains freak the fuck out and develope some seriously debilitating shit.

So, after I watched several YouTube videos of assessments, before and after, patient testimonials, etc...I contacted them.  I am going to syracus, NY. To a PT to be assessed on the 17th.  Let's just say, fingers cross.  Cos, if I am in that 20%...I am gonna be PISSED.

So, there's my new hope.  It has changed my mood.  Not that I am a sad sack...I am actually pretty chill, and only have moments of super sucky self loathing.  I have always been mercurial, so...I ain't giving my moodiness to MS, too.  It has already laid claim to a lot.

Anyway..I wasn't gonna blog post about it until after, but...hey....I did.

It's called.balancewear vest, by motion theraputics.  Check this shit out... If I got my balance back, would change my life.

Not to mention, while I can't remember the medical name....the vest can cause 'carry over', meaning that after you take the vest off, your body still acts in a way that it did when the vest was on.
Re-mapping...kinda.  Artificial center of balance.  Fucking counter weighting.  So simple.

I am excited, and will update after my appointment.  Neato