Wednesday, January 20, 2016

And the Band Played On



"I know we've been struggling with staying positive in the face of how difficult things have been getting with Bennett's aggression." I said to her. "I was out and thought, I don't know...it might be cheesy but maybe we could all use a reminder."

"Where'd you get 'em?", she asked as I started unwrapping from the newspaper.

"Dollar General."

As I lay them out in a row I asked if she could tell me which one was for each of us.

"Let's see...Laugh is for Carter. Believe is definitely for you. Cherish is for me."

"Congratulations."

"I'm just that good!"

She walked triumphantly back into the other room, as if she had just won the Pick 4, past the window covering I'd picked up for her car. One that you can put on your windshield that keeps you from having to scrape snow and ice and shit off in the morning.

She didn't thank me for that one either.

I felt a heaviness in my chest...that same one I feel every day. Multiple times a day. That same one I have felt for years. Looking down at the cup I clutched the handle and stared at the word 'BELIEVE'. A small part of me wished the cup would break in my hands, shredding my skin and sending me to the hospital for a few days.

I don't know what I believe anymore. I only know what I know from moment to moment. And at that moment all I knew is that I was determined that Bennett would not have the night like he had the night before. Tonight he would stay calm, he would be happy, and if not happy at least content, and he would fall asleep before ten, not at 2AM.

And that is exactly what happened. When the trouble started, I asked Jennifer to go to her room and Carter to go to his and stay there. Within 2 minutes Bennett and I were having a great time and within thirty he was asleep. It wasn't rocket science. Not at all. I just can't explain to you why I am not able to facilitate this all the time. It's complicated.

I would be lying to you if I told you I was happy. I'm not. My youngest son is disabled to the extreme and we are pulling him off the one medication that controlled some of his most horrifically violent behavior. My oldest is angry, afraid and isolated. My marriage is a wreck. My family's ability to interact with each other is fractured. My career is a nonexistent joke. My parenting skills are laughable my social skills eroded to the point of almost being unusable. And I'm certainly no saint. I've screwed up in my life far more than I've succeeded.

But occasionally...every once in a while...I can steer this ship away from the worst part of the storm...occasionally I can do some good.

Tonight I did. And I'm proud of it.

Peace,
blogzilly




“You were standing in the wake of devastation
And you were waiting on the edge of the unknown
And with the cataclysm raining down
Insides crying "Save me now"
You were there, impossibly alone”
-Linkin Park

Sunday, January 10, 2016

You Say Dystonia, I Say Dyskinesia...


Holy crap...this one got away from me. I started writing, it was ridiculously long. Even by my standards. I started a basic recap after we got back from Cleveland. It morphed into Mr. Lilly's Opus.

Eff it. Gutted the bitch. Maybe I'll strip mine kibbles and bits to use somewhere else. Or not.

Sometimes the voices in my head are too reasonable. Boring.

Bennett's visit to Cleveland Clinic went as I thought it would, with one or two exceptions.

The first was my overall impression of his new Neurologist. Dr. New Kid was pretty good, but was nowhere near the blown off my rocker experience I had with Dr. Lachhwani. But, he is "Bye-Bye in Dubei" for two years, so this is what it is. Gotta make it work with New Kid.

The second exception was that I was not expecting definitive. While I didn't get much of it, Dr. NK did think Bennett had some Dystonia in his foot. Definitively.

The doc had rubbed a finger up Bennett's right foot and showed me how one toe was pointing weird and yeah, I had never noticed it before.

Going in to the appointment here is what I believed. My main theory is that Bennett has been taking Risperdal too long, and the effect of this powerful anti-psychotic medication is causing the muscle tension in his shoulders and awkward movements in his arms. So we could be dealing with Dystonia, Dyskenisia or both. Because of Bennett's brain trauma, things get complicated.

In regards to Dystonia. From WebMD:

Dystonia is a movement disorder in which a person's muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body.

Brain trauma can be a cause. Stress can worsen the symptoms, and of course anti-psychotics can be a big deal in this. Why the cut/paste summary? BECAUSE...

I pulled this from Michael J. Fox's website. I liked the simplicity of the description:

Dyskinesia is a difficulty or distortion in performing voluntary movements...it can...result from prolonged use of certain antipsychotics. Dyskinetic movements look like smooth tics — sometimes like an uncoordinated dance.

If you don't follow my Instagram or Facebook you did not see this video I posted which shows the movements much better than a photograph really can. I don't know if a Blogger video will load...I may have to revise this, but I will give it a go here:




On Fox's site it also says this:

Unfortunately, today there is no good solution to actively control dyskinesia...Dyskinesia can worsen under stress (especially psychological stress), so reducing environmental stressors is important.

The movements for Bennett are worse later in the day. They are MUCH worse in environments like the above, a party or get together, where he is clearly experiencing stress. For example. Right now? As I type this on my tablet? It is 2:11 PM, he slept super late, he is watching his iPad and it is just he and I in the living room. No movements. Very little stress. There is some flexing in the right hand. I caught just a bit in a photo while he was having a snack.


So which one? Dystonia or Dyskenisia? Does it matter? I don't know. I don't know enough about it to know. Hence the FEAR and ANXIETY resulting in EXTRA DEPRESSION. But my choice here was just to show how similar they seem. To the lay person. Or to those of you who GET laid.

So what's the current plan?

It has to be process of elimination. We go back for a 2-day in hospital EEG. That's this coming week actually. I suspect it will show no seizures at all. But we have to be sure.

We have to wean Bennett off Risperdal. That's happening. With luck, if he has any coming to him, he can kill all of this by just getting off of this drug. A year or two back there was a major medication fuck up with Risperdal and a more...direct form of it called Invega. He developed a Tardive Dyskenisia that scared me shitless.

Why go back on the Risperdal at that time after seeing those symptoms?

There was no alternative. No alternative that would help Bennett during the worst of times. Times I will likely never share. The videos I mean. For one I don't have that much because when I would try to shoot the worst of his episodes I couldn't for long because I would have to intervene. I'm talking horrifying moments like him trying to throw himself down the stairs, slamming the door on himself, banging his head into the wall...not to mention the ways he would attack everyone else.

It was like Banner and the Hulk, but I'm talking back when the Hulk was an uncontrollable thing of rage...not the somewhat tame version you see in the modern Avengers movies.

And there is still no alternative.

What will we do? I don't know. I don't. We tried CBD oil a while back it didn't help like I hoped. I think Bennett needs something more potent. That's not legal here. To say that I'm frightened about what his future holds is a massive understatement. As the Risperdal is pulled further and further back, what is going to emerge? And will Bennett's physical symptoms go away or has new permanent damage possibly been done to him?

I worry less about the latter, as his movements have decreased slightly since the Risperdal has been decreased. But am I worried about the former? Yeah. Yeah...

So there you go. The short version. Well, shorter.

Peace,
Ken