Right before my life turned 180

Thursday, June 2, 2011

Robotics and Bikes: Two months since DBS

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. ( ) 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!

 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


  1. dearest silas and amy,

    i have been reading and watching your work and advocacy for about a year now from afar. (not so far, being just down the way in austin..)

    i just wanted to tell you what an inspiration you both have been for me as i have developed a degenerative chronic pain disorder far too early for my taste. i've lost my career, my identity and so much pride only to find a more authentic self beneath my perceived "losses".

    i've been lucky to find that my dear heart and closest companion has been for better and for worse and it keeps me grounded.

    the two of you help me stay on track. cry when i need to, rest when my body tells me and push myself when i can. i went through many stages of grief, but you have helped me realize that i DO have total control over my reactions and actions.

    this growth would have been a much longer haul without reading your amazing words and awe inspiring videos.

    you are both pillars of strength and i really do owe you the most sincere gratitude for bravely sharing your wealthy lives with the world.

    thank you so much! i will always be watching, thinking of and appreciating you and your fearless honesty.

    best wishes this year!


    1. I am so thankful for your post & candor. On tough days, you & others remind me why I post & video blog the good &bad:) it is nice to know I can do something to help others despite this awful disorder.
      I know people can try to imagine what we deal with, but before I was"sick" 7 years ago,i would try to imagine but now I know you can't possibly know all the hurdles.
      I do believe we must stay positive, though not so much we fall in denial. But we have to have one foot in the boohoo corner & one in the what can I do to "paddle" water today.
      For example,i rarely leave the house,& if I can I dress up. Yeah,i may be the only one at lowes with a cooool dress on but I take every day out of the house as a happy all out event!
      The tiny things are sometimes the worst. Unable to get my foot in THE shoes I want to wear, buttons giving me trouble, etc. I miss makeup, so sometimes I put on cooool lipstick & just move on.
      It's finding the backup plan for when you can't do xyz.
      The videos went from just being a way to kind of vent,but now I see it is not just therapeutic for me, but also a good understanding friend:)
      I hope you find me & friend me on utube or facebook,i will be moving this blog so out will be down a bit.

      Keep strong & thank you for your heart felt post, email me anytime


Thanks for commenting on this blog. I have been very bad not posting but I am trying to keep on top of it now! Support Brain Research!-Shakeyamy