When I Think of it

Tonight I remember dystonia

2012-02-17T22:28:00.001-06:00

So prepping for a great weekend with silas, where if it's a project we end up doing at least the usual suspects of house-to-dos are absent (like laundry, ugh putting up laundry or dishes, washing the dogs, vacuuming too much dog hair, cat box ...icky usual that is too daunting when left unattended all week!) I was reminded of my evil shadow dystonia.
It really sucks to cater to it's every complaint"too cold""sit still""do that &i will twitch" on & on. I try so hard to not provoke my attacks.
But oh no, worst part is being so "dystonia compliant" I forget how bad it can last & how painful. How I keep tricking myself into thinking it is way better or perhaps in remission, over & over...UGH.is this what hope is?
So due to low low thyroid this first half of the week,i was barely able to get out of bed.
By wednesday boom thyroid up &i begin devising this plan of everything to do around the house, or if necessary an errand to make this weekend different...
I did tons laundry day one &i started really organizing all my art & felting stuff, total about 3hrs moving about & needed one pain pill.
Day 2:i vacuumed everywhere, more laundry, tons emails, errand (big one 2 grocery), brush dogs, clean bathroom, made sell on ebay pile. Total time:4.5 hours &3 pain pills & jaw pulling
(seems simply silly to list but really explaining the dystonia strike power)
Today, day 3: no matter what I did I could barely stand straight up from the pain, more clumsy, but determined for finishing what I could. Washed one dog, that was the end.pain & spasms.face to foot.

If I do almost nothing the pain is bearable, tremors bad but bad attacks rare except in jaw. But be bored out of my mind! Do a few normal things & potentially suffer days for it. This, this particular part of dystonia is what I hate.especially today& right this moment

Because I know I will now have to be still or sleep saturday & probably till monday,& all I was trying to do was be normal & nice & plan a fun weekend.

I hate you dystonia.

Go see live band you say?

2012-02-16T10:46:00.002-06:00

So as many of you know, Dystonia, for me has a few "triggers" that can make it much worse. Changes in temp., not enough sleep, walking too far, etc. But often times we discover the "new" triggers as we go about life. We found out a few years ago that watching a live band makes my whole body spasm (it's the bass). BUT THIS WAS before DBS (Brain Surgery)! Now granted, i rested before the show and i did sit the whole time... but it didn't cause full body spasms, just my jaw. So now I know to up the settings on my DBS stimulators and we can rock!! The recovery time of getting dressed, the car ride, 3 bands, the cold, and being up and out till one a.m. was 3 days. So in other words, to get back to low pain and low spasms I had to sleep and rest for 3 days after. But it was so much fun and so good to be out of the house!!!

Holidays

2011-11-29T10:13:00.001-06:00

And so begins the tornado time warp...
The only way you can miss it is to avoid t.v., radio, stores & people.
Sept. The halloween stuff comes out (my favorite time to shop clearance)
October.halloween &"fall & thanksgiving "share store space...
November.next to nothing left for"thanksgiving decorations" by nov 10th...all it is about is black friday.
When the halloween stuff comes down in the stores,xmas stuff begins & spreads it's buy me! Buy me! Slowly through the stores before thanksgiving...

The first commercial I saw about xmas layaway was feb. 2011.

Now, making less money than when I worked, you can ask anyone,i am one of the best shoppers ever. Silas needs new suit pants for work? I search the web & find 90 dollar pants, clearance 20, one length too long (so I hem them), with coupon codes & ebates cash back,i end up spending 8 dollars.
So I get layaway (which I think we used every xmas when I was growing up because everyone had it)& I am no scrooge! I love xmas! BUT our buy, spend, camp out for that tv,etc is out of control.if you went to a store once a month,i swear you wouldn't know half the time what month it is.

As we grow up things change

I used to love the focus on me (only child, only grandchild...) Esp the fun with my grandpa & grandmas cooking. I can close my eyes &see&feel the whole thing. But, now with Monee&PaPa gone & now it's just mom, sharan, silas-work seems to stomp it's feet on the usual 24th fun. We do small, meaningful&needed presents, but not until march.

With holidays sometimes sad for silas, sometimes we don't even put up a tree. But this year, dang it, that tree (i have 4 all 1950's style) the big white our hot pink one & we are going to enjoy the lucky time off & enjoy silly movies& make the dogs wear reindeer hats:)

Just thinking about this, as I just saw yet another here is your lexus for xmas, that really makes no sense.

Traditions change, but we decide what to add& especially how happy we will let ourselves feel:)

Gift to myself soon

Being very physically weak this past year (my only goal was the darn thai chi & swim class where we don't swim but stretch & my legs go numb.so hopefully shots & procedure this week will help &i will for the 5th time in 6 years, do physical therapy,hopefully my swim class more than once every 60 days & do my wii or kinect...come on! )

Follow the journey, help find a cure!
Shakeyamy.org

Where has this robot been?

2011-07-10T22:48:00.001-05:00

Whew, how time flies. So I have now had my programmming twice. Thankfully we will be doing them every month now that I have met all my medical deductibles, so it doesn't cost 500 plus 40 office visit.now it's all covered, along with my botox injections (were 400-650 every 3 months)& my baclofen pump refills for my essential tremor (were 400-500 every 55 days).
So, yeah broke but the good side is no coughing up big bucks for 6 more months!
So, even before the 1st programmming,i had improvement just by having the leads placed & finally all the moraphine (from the pump)& hardcore break thru pain meds were officially out of my system &i need less oral so just the new found mental energy was amazing. But oddly, after the first programmming, though it helped my gait, wasn't working for me. It's weird but I was having a new kind of headache, aggression & my whole head felt very bruised. I lowered the stimulator (pace maker) for my dystonia side & the aggression went away right away! But of course lower setting, more dystonia.
As for the bruise & headache, well one day I just shut off the other stimulator & within 2 minutes the "bruised skin"& headache gone!

So finally saw my neuro 2 weeks ago & we went to setting B, raising the volts on the left machine & lowering volts on the rt.

My dystonia & tremors have been way worse, but it's texas, with the days temps avg 101-107. It's one of my biggest triggers, so home bound again.but with the new mental energy,i would dare to drive to sonic or a shop near by, then regret it. usually (before dbs) I would need to rest & do nothing the day before & after "an outing" just to recoup. It's like that now, except my thyroid is again so out of whack (graves-means it is way high & can't sleep, or way low & sleep way way tooooooooo much) that between that & the heat I am just trying to keep up with what my body is doing at any given moment.
But I see the neuro tue& can try to tweak the dbs for the heat at least!

I have been very busy when awake, just doing medical appeals, paperwork,& art stuff when I can.

One thing is my eyes are really bad & the dbs settings do seem to affect it as well, so hopefully when a good setting is found I will have to do a new eye exam.

I also have been busy preparing to "organize & run" the big event for the kids & teens for the symposium in chicago in august. There were & are alot of things I needed, so thats kept me busy.i am soooooo excited, I'm trying to keep it somewhat secret the cool plans I have laid out:)

And finally, the coolest thing is that I start my swim class tomorrow.it's a class at a "gym" but it's where you have to have a drs note to join,or do PT there etc. my muscles are so twisted & weak I am not doing the full gym thing yet.since my wiifit &i do fine working on balance,i think the swim class will be tough enough.it's a class for people with parkinsons or MS so it's really tailored for my needs, plus I am excited to work on meeting new people too. It's weird, if you know me I am very social, but being home bound almost two years after being at my job where talking is 90% of the day.well let's just say, the dogs haven't helped, ha !

Ok, as you can see from the post time my thyroid is super high, so I can't sleep a wink.

Soon,i will start posting more, updating the site & posting more videos:)

Happy day to everyone,
Shakeyamy

Raising DYSTONIA awareness, ONE person@a time!
www.shakeyamy.org

An amazing cat

2011-06-13T00:55:00.001-05:00

In 2002, I adopted from the vet a 5 year old cat who had a medical condition & had to be on a medicated food the rest of his life.

To be completely honest, I am 100% a "dog person". I only had Hotrod when I moved to Dallas,& he was either depressed or bored, so I thought an older cat would at the least provide him amusement...

Well,Oliver was slapping Hotrod silly& soon took over the "dog"couch.

6 months later,i was blessed with rescuing a puppy from being beat to death, so Harley provided the much needed company Hotrod needed.

And Oliver, well he ruled the house. I had never & will never know a cat like Ollie. He truely thought he was either a dog or human.

His medicated food made him gain alot of weight over the years & no one could come over without either freaking out at his long hair &22 lbs, our laughing at his pure dog attitude.

He would purr but my favorite was his loud talking (really loud) late at night, often saying "ow" "no" or "mama".

This year he is 14. Before my brain surgery, he was losing weight & his "leg warmers"(chubby theighs) soon were gone. I could no longer call him boom-boom or fatty. He was sleeping more, but so was I :)

Tonight, ollie has taken a turn for the worst. He has been unable to make it to the litter box & is losing more & more weight. He keeps saying mama&i can tell he is in pain.

He has put up with my long work hours, my constant fostering of over 50 dogs over the years & the growth of my adopted foster dogs, all who treat him like the mofia boss.

From our 10 lb min pin to our 175 lb mastiff, when I say time for treats, he is always sitting with the entire pack, another dog in cats disguise.

I know the hardest thing is when as a pet "owner" you must let an animal not suffer, no matter the pain you may endure from the loss.

I am just going to let the tears flow & take him to the vet in the morning for the best guidance.

It is an amazing thing to have such a wonderful gift change your life,& pets (my kids) always are teaching me amazing lessons & no limits to how much they can love you.

There will never be another Oliver.

Raising DYSTONIA awareness, ONE person@a time!
www.shakeyamy.org

Robotics and Bikes: Two months since DBS

2011-06-02T10:56:00.001-05:00

Hey everyone! Sorry we haven't updated everyone all month, but we've been adjusting to our new lifestyle changes, letting Amy heal, and just getting used to living for the future instead of the moment.

Wow, so much to tell! I guess I'll just dig in. First of all, I don't really have too much bad news. We had a scare a couple of weeks ago when she hit her head RIGHT where the DBS lead goes in her brain, and it reopened the skin where the staples were. She had to go on aggressive antibiotics to nip any risk of infection in the bud, which they did and all was well. She has also recently discovered that the lead on the right side of her head gives her jolts of pain right at the site and makes the left side of her face hurt, so she's been turning the right stimulator off. (Because you know, the left controls the right and vice-versa). We were prepared for something like this, but it still sucks. However, she has only been programmed once. We have only just begun, friends. Think of it this way: She has two stimulators installed in her chest, each stimulator has two leads, and each lead has 4 contact points. We have only turned on one contact two of the leads. So you can see how many possible combinations we can explore! Plus, with two stimulators, we can control frequency as well as wattage. SCIENCE!

Another thing we weren't prepared for was the possibility that hair might not ever grow back where the staples were. We're told it will, but right now she has two ¾ inch C's on her crown that are shiny and smooth as a piece of plastic. She has decided she will keep shaving her head until our Chicago trip in August, which I'll get to. Something really cool is that like most women, she hasn't known what her natural hair color was for quite some time. Now she does, and it's cooler than we imagined. It's THREE colors! The hair around the scars has turned RED, the back of her head is light brown, and the sides are about half as grey as mine. It looks really rad, so when she grows it out it will look like she did it on purpose. Kinda neat.

OK, on to exciting things. Amy & I have nurtured a good relationship with the Dystonia Medical Research Foundation (DMRF) in the 5 years since she was diagnosed, and two years ago we were invited to moderate and the DMRF Children and Teen Symposium in Chicago. ( http://www.youtube.com/watch?v=Mc4CZAD5rw8 ) It was awesome, and she really shined. She made everyone laugh, and I feel she brought a great attitude to kids and families that may be struggling. I mean, a girl that proudly calls herself "Shakey Amy" has GOT to have a good attitude and outlook, right? Side note: I just chuckled at all the times I've said "My wife, Shakey Amy" and hear people say "that's terrible! Does SHE know you call her that?" Haha, umm…she came up with it, so I think it's OK. Well anyway, we've been invited to The Symposium AGAIN! This is a great honor, and Amy has a great plan. We're buying several small "flip" USB video cameras and bringing them to Chicago to use and donate. She is going to teach the kids how to document their journey with Dystonia, and how to take charge of their disorder by speaking out. It's no secret that Amy was the first person on YouTube to document her life with Dystonia, and now there are tons of people doing it. Her videos are what got her noticed by the DMRF, and so it makes sense for her to bring her experience to the people. I don't want to give it all away, but there will be a "movie" of all the kids on Sunday concluding the event, and they will be raffling off the cameras to the kids for them to take home and begin their own video series. Very cool. Also we will be celebrating our fifth wedding anniversary while we're there, so we're staying an extra day and doing whatever we want. We already know what shops we're hitting. We also have a few friends in Chicago, so who knows what we'll do?

Another groovy honor is Amy being featured on the DMRF's website's "Faces of Dystonia" section. Just look for the pic of "Robot-Me" holding Amy! http://www.dystonia-foundation.org/pages/faces_of_dystonia/620.php

Let's see…..Oh, I guess I should mention that Amy has seen an increase in her energy. Instead of having to just lay on the couch and will the pain away, she has about 3 "good days" per week. That may sound like a bummer, but you have to see it through her eyes. It's a victory. When we tell people to cherish the little things, we MEAN IT. These good days are wonderful! We will take ANY good day over NO good days. As some of you might have seen, I bought Amy an electric bicycle last week. There's actually a great story attached to it if you'd like to read it.

When Amy & I first met, we were just friends. We were tired of the dating scene and were just looking for someone we could talk to without all the BS that comes with playing the game. Well that obviously blossomed into a romantic relationship once we realized we were falling in love. So our first date-date was a bike ride around White Rock Lake. We have a great picture from that date of the two of us both with long, bleached bangs. Both of us looking like two peas in a pod, and just happy as hell. It is a grade-a magical moment in our relationship forever adorning our fridge. That was the last time she ever rode a bike because she got sick about a month or so later. I know, very sad. HOWEVER, here's the mushy part. I got her vintage Schwinn out of the shed and tuned it up before her surgery with the goal that one day we would recreate that first date. A lofty goal, yes. But a GOAL nevertheless. Since it's going to be a while until she can fully pedal a regular bike, I decided to buy her the e-bike and get myself a slow & low beach cruiser just so we could be at the same pace: hers. Baby steps. Always baby steps. She now wears a little articulated robot pendant around her neck, and is adding a bike pendant to always remind herself of our goal. "Robot and Bikey" will ride again some day. <3

I'm sure there are lots more things to tell, but I think I covered the bases. We owe you guys an update. After all, you people reading this are the reason Shakey Amy is known all over the world. She may not be a superstar, but she's A STAR.

We'll try an update after the next programming session. On a related note, we are also turning her Baclofen pump down every time she gets her DBS programming. Our goal is to turn the pump off some day and get the Baclofen out of her system. Morphine down, Baclofen to go! One day she will be on ¼ of the meds she was on at her worst point, and none of them will be opiates. No more being a drug addict just to still feel like poop.

OK everyone, take care!

-Amy & Silas

Update 6 weeks after brain surgery:)

2011-05-25T21:40:00.001-05:00

So, boy does my hair grow slow! So, this chia hairdo is ugh! It's summer so I figure I will keep shaving it,& let it grow at a snail pace come cool weather october:)
I was doing so good health wise but I see now why it takes so long to program the "simulators" that send"volts" to my robot brain.thankfully,i still have more energy than before (i think alot to do with taking the moraphine out of the spinal pump too) but tons more programmming to go!

Raising DYSTONIA awareness, ONE person@a time!
www.shakeyamy.org

One week since the DBS Procedure!

2011-04-14T15:09:00.001-05:00

Hey Team Robot, here's the "1 Week later" update.

Those who were following along on our FB group know that the surgery went VERY well. It took half the time of some peoples DBS surgeries, and it was all done in one procedure. She was in at 5:30am, had the halo screwed to her head by 6am, and they started about 6:30am. I was BLESSED to have our dear friend Shonda, Amy's mom Belinda, and Amy's Aunt Sharan with me. If they hadn't have been there, I would have fallen to pieces. I was especially glad to have Shonda there with me. She has known Amy for a LONG time, and has gone through this whole ordeal with us from the get-go. She knows Amy as well or better than I do, so needless to say she is as emotionally invested in Amy's well being as I am. We were sharing the same emotions from the same point of view. Meanwhile, Belinda and Sharan are on a whole different level since they've know Amy all her life. (Duh.) Having all three there made me feel at peace, but I REALLY knew it was going to be OK when Dr. Desalomes said "OK, so we'll see you guys about, say…1pm?" Hearing that confidence in his voice and the news it was only going to be about 6 hours or so was such a relief, considering we were prepared to hunker down all day. We had a nice place to sit in west part of the lobby, and I got calls from a nurse on the phone next to me about every 45 minutes or so. Each call was very positive, although the first four started with "Mr. Courson? Um, yeah, OK….." before she got on to the good news. Of course each time I heard that, my face would drop and Shonda, Belinda and Sharon would get freaked out. I put on a big cheesy (fake) smile every time I answered the phone from then on out, which lightened the mood. I remember thinking how amazing it is that we could laugh together while Amy was getting BRAIN SURGERY. I think it's just a testament to the love for each other and Amy that we had going in our little support group. We got the final call from a nurse at 12:20 saying they were installing the second stimulator in her chest and everything was A-OK. I stepped out to get a drink, and when I returned I found out that I had just missed Desalomes talking with everyone. I was pretty upset that I didn't get to hear the update firsthand from the neurosurgeon until I heard the update. He said that the stimulators were placed in the OPTIMUM position, and that it was one of the smoothest procedures he'd ever performed! (Mind you, he's done 600.) The best news was when they briefly turned the stimulators on to do motor skills tests to see if there could be any complications that her right hand "unclawed" and her right leg/foot straightened out…except her pinky toe. That's when I allowed myself to cry because it was over, and the thought of Amy being able to SEE her body turning normal just turned me into mush. (I'm welling up with tears right now as I write this!)

To wrap your head around the gravity of this news and that exact moment in time, let me just outline the struggle that preceded this moment. We met in May of 2005, and she began getting sick a few months later. We have gone from her having a numb patch on her leg, to twitching, then violently spasming. She has suffered absence seizures, being guinea pigged with all sorts of caustic drugs, and becoming skeletal from them. We have endured being told she may have Parkinson's, MS, Tourettes, and also a botched spinal tap that gave her an excruciating "spinal headache" in which she had to undergo THREE blood patch procedures in her spinal column. (Google "Spinal Headache" if you want the brutality of this incident plainly illustrated.) We have been told that it's all in her head, and that she is causing this. She was told that because she's a woman, she can't handle the stress of her job and that quitting at her prime would improve her condition. A one week sabbatical from work to "just rest" showed that she was just as bad at home, and a two week vacation in the hospital for observation, physical therapy and occupational therapy also proved that to be utter nonsense. We had the Baclofen pump installed in her spine and abdomen to help with her severe spasticity just so she could try and live a normal life and keep her awesome job. We have been fired by neurologists and told that her sense of humor in the face of being crippled was too morbid. We have been told on NUMEROUS occasions that DBS just wasn't an option for her. We have had to make the realization that Dystonia was winning, and that she could no longer work. We had to go talk to the president of her job and tearfully have her step away from a career that she LOVES and go one permanent disability at the tender age of 34. We have had to alter our lives in SO many ways to accommodate Dystonia. In the year that she has been on disability, she has been directed by our neurologist that she is limited to TWO HOURS A DAY of any physical activity. That's not two hours at a time, that's two hours TOTAL. Getting up to use the bathroom? There's 10 minutes chipped away at her physical activity window. Feeding our furry babies? Yep, there's another 15 minutes out of her day! So now she has essentially just spent 25% of her allowed daily activity, and the day is just beginning. For over a year, she has been confined to the recliner, blankets, and pain medications. Her quality of life was SHIT.

I could go on, but I think I've made my point. All of these things that have happened in our journey all came to me instantaneously as I heard the news that her body RESPONDED TO THE PROCEDURE. We have not had ANY hope in almost SIX YEARS, and all of the sudden I was allowed to actually picture Amy & I having the life we deserve. The life that we dreamed of having together when we met, the life we planned to have when we got married, and the life we had say goodbye to because of Dystonia was now actually POSSIBLE. It was the most beautiful thing I have ever heard in my life.

*(OK, I had to walk away from this post for a day and come back because it was too emotional for me. It was just so heavy to outline everything that Amy has suffered, and it was breaking my heart to re-live all those awful moments in our lives. Let me continue…)*

She stayed in the ICU for the rest of the day and night just to watch for any signs of infection, and got a personal room the next day. She got excellent care, as Presbyterian always offers. It was so excellent that when I went to visit her on Friday morning she was ready to be discharged! What a trip that we had our Amy home by noon just two days after such a radical procedure. She kept the bandages on her head until Sunday, and now she is rockin' the skull & staples full time. She is healing well, but she is very ready to get the staples out of her head. She has a total of 39 staples in her melon. There are nine on each side on the back of her head, and the rest in two semi-circles on the crown of her head. There's no more swelling, so the staples are looser and she feels them shifting and catching on the tiny little hairs on her head. You can imagine what a ghastly feeling that must be. Her two chest incisions were glued together and covered with a clear tape, so her chest scars will be quite minimal. They'll definitely show, but like her extensive tattoo work those scars are a proud mark of the journey she has been on. She is scheduled to have the staples taken out on the 21^st, and we turn her on and start programming her on the 27^th!

We still have my wonderful mother-in-law staying with us so I can keep working and not have to worry about her during the day. HOWEVER, she isn't exactly an invalid now. She is much more mobile than she was pre-DBS, even though her stimulators aren't even on yet. While she is suffering pain from the incisions/staples, she hasn't had a major "storm" and has been able to sit by her garden outside, go to the store with Mom, and the best part is she got to visit all her friends and coworkers yesterday afternoon, and only had tremors. It's been documented that just having the correct placement of the leads in the brain can yield positive results, and we can definitely see that is true. We have said for years that if she could get DBS and it stopped her pain, then it would be a victory. Well, she has been getting a small taste of the freedom that everyone takes for granted! It is an indescribable feeling being able to have hope, actually SEE her feeling better, and coming home to an Amy that is calm, happy, and not completely WRECKED. Plus she looks really hot with a fuzzy head, even with the gnarly staples in it.

So to wrap up this two-day task of writing this post, right now we are seeing blue skies. We have hope. We can now actually consider the possibility that she could get a lot better and reclaim her life, or even start a new one (with me in it, of course) if she chooses. Mind you, we are far from being out of the woods. We may have up to a year to 18 months before we find the right settings, and we may suffer some setbacks. We may find a setting that straightens her right side, but blurs her vision. We may then fix that setting to fix the side effect, and another side effect may turn up. Of course, we may just find that magical setting very soon and skip on down the road of the rest of our lives, who knows? The future is wide open, guys. We don't know what's going to happen, but at least we know that her quality of life could improve a hundredfold or at least by a sufficient amount. The point is that we have begun a brand new chapter in our lives, and I am ecstatic. Our lives are a fascinating book that we write every day, but I HATED the last few chapters. When I listen to the audiobook, I'm definitely skipping them to get to the good part of the story. J

Do me a favor, and appreciate the wonderful things and lovely people you have in life. I know it's easy to buzz through our lives and not pay attention and appreciate these little things, but I'm here to tell you that things that get taken for granted in our lives are the dreams of people that don't get to do those little things. I'm not saying that to be heavy-handed, I'm saying it because I want you all to see your life through Shakey Amy's eyes. I can tell you right now that no matter how crappy your day is, or how "unsatisfied" you might be with your situation, you have it GREAT. Like I said in a post on my personal newsfeed last week: "Love your lover, hug your mother, and get out and appreciate the beauty that surrounds you". I sincerely hope you don't have to learn this lesson too late.

-Silas

Educate Others=Find a CURE
www.shakeyamy.org
http://www.youtube.com/shakeyamy

One Week To GO!!!!!!

2011-03-30T11:42:00.001-05:00

Hey everyone. Silas here. Well, today is Wednesday, which means we have exactly ONE WEEK until Amy's Deep Brain stimulation procedure! We're in the final stretch, and it's getting intense. We have been getting hit with waves of "Holy crap, it's BRAIN SURGERY", and then finding out how to cope with the what-if's and what-could-be's.

First off, Amy is probably in the worst pain she has felt since the days when she was having severe storms and wasn't diagnosed and properly medicated. I can't remember if I've broken it down for everyone before, but she has had her Baclofen pump turned down by almost half. On top of not having the Baclofen in her spine to quell the severe spasticity, she has had all of the morphine taken out of her pump. So she is suffering bad spasms and tremors, and she has no pain relief outside of oral medications that don't help nearly as well as the real thing delivered straight to your cerebral spinal fluid. It just struck me how brutal (and almost gross) that sentence sounds, but that's just stating the facts without adding any verbal flourishes to it. It IS brutal. It's unimaginably hard for her to take, and it's really hard to watch. (More on that in a minute). Her thyroid has leveled out this week, but she has still been sleeping a lot. When she sleeps, she doesn't have Dystonia. Even though I don't get to spend time with her as much as I'd like, I encourage her to sleep. It's like time travel. You sleep, then you wake up and its one day closer to the goal. You medicate yourself, you sleep, then you wake up and it's even CLOSER. That's how she's been dealing with it physically. MENTALLY, she's been a cool cookie. Sure, she's had a couple of realizations smack her upside the head, but she has been dealing quite well in my opinion. She's reached her limits to be sure, but she has a good attitude. This is what she's been waiting for, so I think she's keeping that in her mind at all times. She's dealing nicely, and I admire her so much for that.

Speaking for myself, it finally hit me on Monday morning, beginning on Sunday night. Amy was in excruciating pain that evening, and had me massage her muscles to try and loosen them up. This was very painful for her, and she was sobbing like I have never heard before. Instead of crying with her, I steeled myself and tried not to lose my cool. After all, I'm supposed to be her ROCK. I need to be strong for her and let her just let it out. Well, that wasn't healthy for me. I bottled up my fears, sadness and the extreme feelings of helplessness that come with seeing Amy hurt, and hurting her even more by karate-chopping her muscles. Early Monday morning, I felt awful. My stomach was churning and I began to feel physically ill in ways I have never felt before. I ended up calling in sick to work on the busiest days of the week and go back to sleep. I was eventually called in anyway and had to rush to work to be at my 1:00 meeting. I felt really weak and disconnected, and I was having waves of anxiety that scared me. I cried off & on, and all I could think about was bad things. It seemed like the longest four hours of my life. When I was finally free from work, I went straight home and went to sleep. I just checked out. I slept like crap and woke up every hour or so, and began feeling "wormy". I can't explain it, but I was REALLY uncomfortable in my skin. That feeling intensified when I woke up. I was really dizzy and had cold sweats. I'm telling you, I have never felt this way before. Well, it just got worse from there. Yesterday was a really hard day for me and I fell to pieces. I just couldn't work, I couldn't shake that wormy feeling, and I couldn't stop crying. It wasn't until about 4:00 that I started feeling physically (but not mentally) better. I made it home, did some chores, and let myself love on my wonderful wife and cry. I told her I didn't know what the hell was wrong with my body, but it was really freaking me out. Amy broke it down for me that my emotions were manifesting themselves physically and that we needed to talk it out. We agreed that it's going to be tougher than we thought for ME to deal with, and that from here on out ANYTHING could happen in our minds because we are so CLOSE. Even though she's facing the surgery, she will be preoccupied and doped up during the procedure. Meanwhile Me, her Mom Belinda, her Aunt Sharan, and our dear friend Shonda will be sitting in the waiting room for about 12 hours FREAKING OUT. While she suffers in a manner we can't imagine, we will suffer in a way that she can't imagine when she's in the operating room. Amy always has a way of making me see the obvious when I am stressed out or when I do something stupid. She's brilliant that way. She knows everything about me, and what makes me tick. Although she doesn't have to do it as often as she used to, she always knows how to bring me back to Earth. This morning when I talked to her on the phone, I started getting weepy again, and again she brought me to my senses with a little e-mail:

I'm not perfect
You're not perfect
But together we are FLAWLESS

This is just one reason why I have been getting so scared: because I love her more than anything on this planet. She and The Twins are all I have in this world, and if anything ever happened to her I don't know what I'd do. She is my life. Without her, I'm nothing. I wish everyone could have what I have in her, and could feel love in their hearts like I have for Amy as intensely as I do. We should all be so blessed. And you know, considering that I have buried my whole immediate family one-by-one, you can imagine how tight I've held on to Amy. I'm not ashamed to admit I have severe abandonment issues. Anyone in my situation would! I know this, I've worked on it in therapy, and I've made my peace with my role as a caretaker. But as I've been saying to myself lately, I'm strong but I am not made of stone. I am a fragile human being that is acutely in touch with his emotions. I've never been a typical guy in that aspect, which is I guess why Amy loves me as much as she does. Anyway….that's MY update.

So that's the one week pre-op update. I'm supposed to be writing this all down for you guys and for myself all this week, and then some after the surgery, so I will try and be diligent in my updates. They probably won't be as verbose as this one, but I can assure you that I will try and get all the news I can about how everything goes down to you all. This is the hugest thing that has ever happened in our lives, so I'd be remiss if I couldn't scrape some words together that inform our friends and followers about how this is all happening as it happens. Also, we have our whole lives ahead of us, and I'm sure it would be nice to have something to read that reflects this time in our lives when we're older and…wait for it…

WHEN AMY IS BETTER!

Time sure its zip zipping by...

2011-03-19T03:17:00.001-05:00

So here it is, exactly 19 days till brain surgery! My mind has slowly been grasping what lies ahead. I am having odd ways of dealing with it,& slowly making it"real".
So last week I looked up tons of different ways to wear wraps. From traditional head garb in India,Israel,Tibet,Japan& Africa.
I have been printing out directions & cutting fabric to the demensions needed. Not to mention putting the silk ones I have & sewing 4 of them to make a larger square.

I am in no way a girl who says oh no, my hair! But I do love a reason to change up my wardrobe:)
Plus it will take about a year (at chu for my hair to grow back) so,i thought the hot texas sun would be awful:)

I have tons of sundresses but I am lacking on wrap dresses, so thats my project next week.basically use t-shirts that I have that don't fit anymore, sewing them together like a quilt & making a simple wrap.i will post as I make things.

I also have thought alot about the actual surgery (which is usually done in 3 visits, but mine will be one
Day!) So,i am not scared & excited I get to be awake for most of it!

But the worry I have is that I am"going into the surgery" needing botox, my abdomen/spinal pump down 45% in my anti spasmotic meds, now ired my moraphine one week...
Basically going in, in pretty bad shape(which is good for seeing the dystonia in action) BUT they turn the stimulator on during the surgery, but only to test the lead location. So I am more worried about the poison while recovering. I won't get botox till a week after, my spinal pump may or not be turned back up,& so on. I just hope, sooner than later I will have relief.

Ok, done for tonight.my right eye its closing &i should try to get good sleep.

Hope everyone is well when reading this;)

Shakeyamy
Raising DYSTONIA awareness, ONE person@a time!
www.shakeyamy.org

Less than one month until Shakey Amy is a full-on cyborg!

2011-03-11T00:54:00.001-06:00

Hey everyone.It' Silas here, Amy's husband/caretaker, cheerleader and lifelong partner in this insane journey of our life together. I just wanted to pop my head up from the stress and craziness of getting ready for Amy's Deep Brain Stimulation and give everyone an update and what's shakin'…you know, besides Amy. *rim shot*

First off, the yucky stuff. Amy's Intrathecal Baclofen Pump has been turned down by about 45%, and we are really seeing just how much it had been alleviating her Dystonia symptoms. Even scarier is that we have found out just how much her Dystonia has progressed in the 2 ½ years since the pump was implanted. And to make it worse for her, we have now taken the morphine out of the pump, so not only is her Dystonia bad, but the medication in her spine to treat the pain is GONE. It's really bad, and any description of what it is like for her would fall short of even scratching the surface. Her Cervical Dystonia pain is at an 11, and no amount or combination of meds seem to help. It's very hard for both of us, but at least we have a goal and the month of debilitating pain she's suffering (and the anguish I have watching this helplessly) are a small price to pay for a possible life of living pain-free. The dreams of the future we cautiously allow ourselves to talk about seem to salve the hurt we are experiencing now. It won't last forever, it won't last forever, it won't last forever, it won't last forever…..

OK! Now let's move on to the good stuff! The best thing to report is that we got the insurance approval letter for the surgery! What this means is that there's no turning back, this is GONNA HAPPEN. Even better is that we now KNOW what is and isn't covered, and it's not as bad as we had feared. We'll still be broke, but let's just say it's not going to be as expensive as her pump was. We have it hanging on the fridge like an award. It's the most beautiful thing we've ever seen. So right there, a lot of fear and anxiety has been taken off our plate. *whew*

As you may or may not know, Amy is a METICULOUS planner. The woman took a scatterbrained chump like me and got me organized, so you know she's on the ball. So it stands to reason that everything that needs to be done prior to April 6th is either done or planned. She has to go to her GP tomorrow to clear up an ear/sinus infection, so that's a little speed bump we need to get over. Then she has to go in for cognitive testing. That may sound harmless, but when it takes 5 hours and you're Amy…well, it's gonna suck. However, it needs to be done so they can get an idea of her personality and quirks, just in case she "changes" after the surgery. Highly unlikely, but still. You can't change Amy, people and doctors have TRIED. I guess that's why it's taken so long to get the DBS. She scares doctors with her sense of humor in the face of crappy news. It must be unsettling to them to have their God-like powers of awe taken away by a spitfire like Amy.

So in addition to having everything in order financial and doctor-wise, my awesome mother-in-law Belinda is coming down to help me with Amy during the surgery and then after my PTO expires. We had our neurologist sign FMLA paperwork for her so she can take an extended stay and take care of her only child without fear of losing her job. I can't tell you what a relief this is. We're going to have the hardest 12 hours of our lives in the waiting room. I can already tell you that I'll be chewing my fingers off, even though I know the risks are minimal, which brings me to something else positive.

Through our advocacy, we have met a bunch of AWESOME people. In particular, two young women we met at the DMRF Symposium in Chicago, Kelby and Jana. Both of them have recently had DBS, and they have been a WEALTH of information. Both said it's really "not that big of a deal", and Jana even said the part where they're playing with your brain was "really cool". In addition to those words of ease, they have also answered some very practical questions we've had about recovery, improvement, etc. So big ups to both of them, because without their input and them calming our fears, we'd be frightened zombies.

Amy has already picked out a ton of RAD wraps and headwear. You know, for when we aren't out showing off her bald head and gnarly staples and freaking people out. She has also come up with a bunch of slogans for shirts that she's going to wear while she heals. We have a screen printing set-up and a lot of imagination, so we might as well have some fun wit it. Here are a few below.

FEEL FREE TO COMMENT OR LEAVE A WALL POST IF YOU HAVE A GOOD SLOGAN SUGGESTION!

PROJECT M.E.R.
(medically engineered robot)
PATIENT 04062011.715

In case of repetitive laughter
Press ctrl + alt + delete
(rt arm pit + nose + forehead)*
*see manual for full system reboot

You only have a brain, I come with a hard drive

Robot on board

F**k the hippies, you're talking with a Genetically altered HUMAN!

I DON'T EAT MEAT,
I only need a socket

One step closer than you are to being teleported

You think being human is hard?

One more surgery & I am taking on the terminator

Built in wi-fi

Fluent in binary

00000110011011100111!
Yeah I said it.

I'm not bored I'm in sleep mode

OK, that's just a quick roundup of the happenin's with Amybot and Me. Stay tuned for more as the date approaches. We'll be asking everyone to change their profile picture on facebook from the 6th until Amy gets out of the hospital (Probably Friday or Saturday)

If you haven't joined our FB group, do it now and tell your friends to as well!

so be on the lookout for instructions on how to show your solidarity.

We love everyone and thank all of you for caring so much for her. You guys are the coolest.

-Silas aka cyborgshusband@gmail.com

Follow the JOURNEY!
Educate Others about Dystonia and help FIND A CURE!
www.shakeyamy.org
http://www.youtube.com/shakeyamy

& the test of technology...

2011-03-02T12:36:00.001-06:00

So...little over one month till brain surgery. I thought it would be good to shoot out thoughts I have for the day & also have Silas, my forever soul mate & caregiver, also share his thoughts.

Having the first symptoms ready become more evident in 2005, to the rocky road of today, had been a life changing turbulent experience.

Now, a progressive, and for me painful, neurological disorder has touched every aspect of my life. Dealing with what it "dishes out"has been both hell and enlightening.

I have learned healthy ways to cope, learned that some life learned behaviors had to be altered (like being the crazy multi tasker, do it all),& that some things I never thought would happen in my life time have come my way. Some amazing things, like learning to rely on good people, giving my heart completely to Silas & trusting him, not to mention believing him on my lowest days that I am still amazing & beautiful in his eyes.
Some unforseen things, painful in a different way, of people I called friends thinking this wasn't real or worse, losing them because they had no patience for dystonia.

So many things, from changes to my body & abilities, redefining who I am,& learning valuable life lessons that I may never had encountered without this drastic life change.

Sometimes I may blog about these obstacles & how I learned to deal with them our learn to let them go.

Sometimes I may just check in on my thoughts about the surgery & what is swimming in my head.

And, perhaps I may just hit topics on the things I have learned, like how to fight medical claims or apply for SSDI.

But first, I think I should take a baby step and see if I can even post using my phone right?

Hope this moment finds
you smiling:)

Raising DYSTONIA awareness, ONE person@a time!
www.shakeyamy.org

dystonia gets me again jan 18,2011

2011-03-02T11:27:00.000-06:00

Blogger Pictures

2011-03-02T10:37:00.000-06:00

2009-05-05T00:38:00.000-05:00

i am still trying to figure out how to freakin blog from my blackberry onto this darn thing. ugh

i am here -promise!

2009-01-27T09:40:00.003-06:00

i have been off the computer for a long time! my eyes have been bad and my energy has been so low sitting at the computer is too much. dystonia is flaring up and i was going to get my dose turned up on my baclofen pump but a day before i was sent to an endocrinologist for a way overactive thyroid. I find this odd- but I have a swollen thyroid, 4 nodules (one is "suspicious") and guess what???? IT IS ONLY ON MY dystonia RIGHT SIDE!!! somehow this is all connected. perhaps from my throat muscles twitching alot? Perhaps getting my botox treatments (though I stopped a year ago) which were in my throat, neck, thyroid gland, and mouth? Who knows- but i have ever side effect plaguing my body right now. Sounds silly after all i have been through but you know what is the worst? The bad diarrhea! argh! It's hard enough to get to work and put on an i am ok face- but when your tummy is bad- well for me it's worse. I would rather have that gone and dystonia all the time. I have hard core tummy meds and though i take the max it doesn't stop it! So I (again) have to call the dr and ask for help. There is a problem with my shakeyamy.org site but i am having godaddy try and help me fix it- so keep it bookmarked and i will update everywhere when it is back up. ok, got to "run" and get ready for work but i have so much to tell everyone. plus per some requests i had my husband film me getting my pump refilled (it's wild to see it for myself!) and i will find time to sit and get it up on you tube. Also I would like to let everyone know the survey for people with dystonia is coming along. I do not have tons of entries but there is enough I am going to find a place to get it published and the proceeds will go to the dystonia medical research foundation during this hard time of funding and the economy all wacky and upside down. when i get them done i will update my site and also send some to the DMRF to sell on their site as well. If you don't know- the survey only has first name and age and then each persons individual story about living with dystonia. It is for anyone who wants an insight to dystonia in our day to day. another update we are still working on the overwhelming task to get all the footage from the benefit last august and getting it into a format to sell to also raise awareness and money for the DMRF. it is bad weather here (by texas standards) so i need to get ready, bundle up, and then slowly drive to work.
hope everyone is doing well and the site should be up soon!-shakeyamy

2009

2009-01-01T21:41:00.000-06:00

This year will be different. It iS what we make it. I am excited for a fresh start!

anyone out there

2008-12-29T09:10:00.003-06:00

Ahh let the new year arrive. my home computer ... born in 2002 is asking to be laid to rest so i am waiting on my new baby to arrive soon. Thankfully with all the sales I got what i wanted and saved 400 bucks. Granted i want the economy to get better (heard on NPR this a.m. a possible stimulus pkg to single peeps 500 and couples 1000). I know they think we would go wild and spend it somewhere but I feel like hording money and paying bills and waiting for the next days news. christmas, if i compared it as the only child i am, was sparce, but boy did sy and i make it the best holiday so far. tons of tiny presents to open (for me it's the opening more than the end- ahh to rip into paper and destroy a box!) and the entire holiday (unable to meet with family) we played classics on our 1960's radio/record player find from a thrift nearby that i scored for 35 dollars. we made projects for the house and took pictures of all we made like we were taking picture of a new wild creature at the zoo. bringing out old photos and for sy putting his mom's photos in an album vs a big tub. and me- taking out my papa's ww2 chest, now fraile like tin and going through what he determined were things to keep in this man's time capsule. we at cheese and crackers and slept whenever we wanted. so over all a good holiday. though different- wasn't it just "different" in the air as well?
I have been posting via my phone but WHY it won't post them i am still working on. perhaps they will all pop up today.

up too late

2008-12-14T23:42:00.002-06:00

how come sometimes i take my meds and i am super sleepy but tonight it is 3 hours past my bedtime and i am typing away? i didn't take a nap to make me awake. didn't eat tons of cookies. hmm it's weird how sometimes the brain just won't shut down even when my body is begging me to go shut my eyes. giving myself 20 more online minutes then i will have to force the sleep to come:)