Right before my life turned 180

Sunday, September 27, 2015

And the weather begins to FALL

OK, finally I have almost made it through it hot TX summer months which make Dystonia really flare up. I am excited to have more than one movie outside in the backyard, to make a million lists of things I want to do and should do and then try to tackle it:)So, I am slowly remembering to update my website, blog, and add youtube videos. Thanks for your patience! I am still telling all the people I can about dystonia, dealing with good days and bad and finding those perfect moments of the day to relax.To more posts!To updated videos!To getting all the links on here working!!Goals goals goals!!!!!-Shakeyamy

Saturday, January 4, 2014

Make a difference? Yep you can.

I just endorsed Denise for Best in Show: Community or Forum in the #HAAwards from WEGO Health. Learn about this amazing Health Activist at

Hey. What are you doing RIGHT NOW? Need to stay the day right? Polish up your karma? MAKE a DIFFERENCE in someone's life but your own? Want to give yourself a small TO-DO that you can cross off your list right away? Click on the link or copy the url and VOTE for my "twin" dystonia sister for how awesome she had been doing.Do this right now,poof you will get a smile, hit every green light when driving, and have a warmer heart!

Check out Denise's #HAAwards Nomination

Congratulations on your Health Activist Awards nomination Denise. Learn about this amazing Health Activist at

Monday, December 30, 2013

Odd moment& some insight

Hello know I believe things happen for a reason. (Like having my dogs hotrod& Harley...finding a unruly rescue I was going to find a home for& found out his name was chopper & immediately stopped finding him a home...had his name been fluffy or joe, NEVER would he be here& one of the most amazing dogs ever.)
So looking up how to finish and add whitewash boards to kitchen ceiling...this video played next.WHAT? So I watched it.
It's just the first 10-5 min I ask you watch, or listen to. But here, looking for how to paint video...I stumbled on some insight into ME.

No, dystonia is not a death sentence.but it does seem like a long drawn out torture device with no end in sight. There is no physical death, but loss of job, self, body, mind, all those are close to death. I know I am still a pistol, but true pre dystonia Amy is dead&I have had to change.

When she speaks of "ok need surgery or death" I thought about DbS. How some people still call& contact me terrified at the option of dbs before them. Her response was like mine.

I also see the depression on depression was as she said not OF the moment, but delayed.

I could go on, but for all our struggles, though different, this explained a lot.

Enjoy& share this if you want
Love to all
Amy behar,

Wednesday, December 18, 2013

Dystonia is why I am here

Some people have doubted my illness. Some people have found it overwhelming. Some have said it seems to be my main focus. I think if faced with pain so unbearable& yet you have your body turn against you...having to alter your shoes, clothes, movements, dishes, furniture... to find out daily you are now at the mercy of your disease and the many other diseases that soon got you because of dystonia have your life totally turned upside down& somehow through physical therapy, therapy, meditation, etc. Not just what you have forever LOST but what you have now gained..
This forever journey.the doctors.surgeries.medications.
To not bury your head in the sand but take each moment (good and bad) to turn it into strength (for me, speaking at events, new patients, strangers, all the you tube videos) has made me stronger.
Yes I pout when I want to just jump in the car& drive or type on the computer or even walk the dog& I can not... but I focus on what I can do.sometimes when really bad, it may mean a nap or a call to a close friend or an old classic 80.s movie... but my journey is not unique... people will come in& out of our lives, judge or miss understand. They may want the old funny a-ok Amy back& can not accept change. But people lose friends when they change, maybe have kids, different job, on& on.
My journey just happens to be up& down& less transparent when you don't see when the hour visit wears me out for days...
I do not hold malice for the people gone and their judgements but they are part of the fuel that keeps me being an advocate until one day we are all cured. It is not a small part of my life, it is my full time job

Dealing with dystonia, chronic pain, isolation, essential tremors& spinal stenosis. I would be a fool to assume if I ignored it it would just poof go away. I miss many people but I understand that things change. I am grateful for the friends and family who try to understand& know how important it is to me to always be an advocate. It is one of the biggest on going events in my life.
Dec 2013

Sunday, October 27, 2013

People and TIME

Before long you are swept away

TIME  no longer begins to remind oneself of an elusive mosquito or a nagging child in the candy isle

You notice the people stuck in time

The sad or deflated person stuck in PAST unaware of the people and events strained by the constant reflection deemed above necessary by this person

The toxic nature of only being in FUTURE the person unaware of their wishing glazed eyes of dreams to come - moments of Destiny that surely will arrive any moment without any effort on their part but lofty thoughts

The over indulgent PRESENT person who spouts out about their freedom of NOW but are slowly being buried by the constant change of time, unaware of the dirt falling like snow, pushing them further into the dark and lonely NOW dwindling survivors

And though when that day arrives where you do not see the clock of time but flicker  reminders of moments all dwelling in PAST,PRESENT, and FUTURE

The puzzle and fears or wonder of any moment of TIME now clearly showing they all are interlaced and in every type of moment not touched by Destiny or Fate

Not living in the PAST the present moment or constant FUTURE is the first glimpse of understanding your place

Monday, February 4, 2013

Well.almost been a month since removal & redo of dbs 1.9.13

Today...I became robot 2.0. Turned on, have to now charge me innards every morning,urg. Pain both muscles & nerve endings at a 9,& it's 11pm. Told will take longer time to heal,whoop, because jolts & pain wherever head is not completely numb. Sometimes bad enough take hospital nausea meds. I am glad finally turned on but now to the too much, too little, meds, pain, test limits,& notice things to mention to Dr.T on march 5th. I was super spacey word wise today, hope that stops soon.I know I can do this road traveled before in April 2011, this one is just more painful, step at a step.

Monday, April 30, 2012

Tick tock

Not long till trip to D.C. Capitol to do Dystonia Advocacy Day! Mom coming to take care of our ZOO& plants!(5 dogs,3 are old & sick)a 13 year old cat, and 8 fishes!
We normally super clean 4 mom visits but  my dystonia is so bad &i gardened toooooo much & phy therapy is killing me !
Taking my travel scooter, fits in a car trunk so easy for cabs, though I sure wish I could take my sweet hover wheelchair, it's way better 4 my back. But it's heavy & each airline there and back is charging tons $ for one bag & scooter,BS!
We also have been saving up(way before knew about this trip) for new flooring ours is from 60's cool but dead:(
So, gonna have to wait an extra month after trip & to save TONS we have to pull up all floor&(please mom paint old border trim)& day of install move all furniture.but will save time &$800!
Very excited for trip & floor!

Day I get back (midnight) next day, phy therapy. Then week later start up phy therapy and yeah(!) I get to join my phy therapy hospital gym for free!(humana advantage medicare bonus, called silver sneakers:p

May is last of stupid cigna,(just got bill 4 $500 for last botox) then medicare.good thing is though botox & baclofen refill are going to cost me 20%,i have baclofen pump end of may:p

June,BOOHOO, is my last botox and DBS programing with my neuro (i love her! But she is moving for 2 years) so have 2 find new movement disorder neuro who does botox &dbs:(

Ok, good update for now

Please check out my home made stuff on my site under robot made:)

Friday, February 17, 2012

Tonight I remember dystonia

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 & 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.

Thursday, February 16, 2012

Go see live band you say?

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!!!

Tuesday, November 29, 2011


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... 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 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!