Okay, I haven’t been online much. Well I have been, but I haven’t spent a lot of time blogging or anything. I’ve been telling people that I’ve been having some problems typing, so we’ll talk a little about that tonight.
You know how someone asks you if you lost weight, but your spouse doesn’t notice because it happens gradually? Naw, that’s not what happened. What was happening was that my hands were shaking gradually more and more. But it happened gradually, so I just thought I was clumsy. Tried threading a needle, took me about 20 minutes of cussing. Figured it was my eyes.
One day, I posted a video on YouTube. It was a kind of technical vid on using a pipe retort. I set the camera aimed at my hands, so I could manipulate the camera. I’ll add here that the camera has a anti-shake feature, so again, I didn’t notice anything through the vid. I figured I’d get some comments and questions about alcohol percentage, disinfection, blah, blah, blah. Instead, the most comments were about how bad my hands are shaking during the video. Here’s the video. You can turn off the audio, it isn’t important, but watch my hands…
If you do listen to the video, you’ll hear a catch in my voice as well. I hadn’t even noticed any of that until I started getting emails and comments.
My arms and legs were getting really tired fast, and I was having a tough time writing.
Now, I hate seeing docs. All my family doc ever says is that I’m just getting old. After years of this, I thought, duh, get a second opinion, so I saw an orthopedist. I did have a torn meniscus but after the surgery, I couldn’t hold my legs steady enough for rehab. He suggested neurologist, so I went to this very nice doc. I did actually bring the video above with me, because sometimes I worry that they’ll just say I’m a hypochondriac.
She saw the video and said it was a “resting tremor.” At this point, I’m going to assume you know how to do ‘net searches, so I’ll use technical terms to keep this novel a little shorter. She had my draw a spiral, and it looked like someone doing a spiral during an earthquake. She moved my arms, legs, had me do this and that.
Now the weird part. You ever watch those cop shows where they test to see if someone’s drunk by watching them walk heel to toe (tandem gait)? I haven’t done that under observation since I was 18, but hey, I could do it a few years ago, what’s the big deal? One step into it, I fell down. I got back up and she said that was okay, and have a seat. Well the hell with that. Must’ve been not paying any attention. Well, I did manage to make it 3 more steps. I was gasping with the effort, and it looked like I was walking a tightrope. I knew I was off-balance, and my brain was telling my legs what to do, but they just were ignoring me. I stopped trying it, stumbled sideways into the wall. Maybe it was a smart thing to have a seat at that point.
She said it was neuropathy. The loss of balance, and my difficulty walking. I’ve been walking with a cane for years because of my screwed up knee, but what I didn’t realize was that using the cane was masking the fact that I was off-balance.
So, long story short, I had my brain magnetized, 5 gallons of blood drawn ONE TINY TUBE AT A TIME, and have been repetitively subjected to electrocution.
We looked at the MRI. That eliminated the two scariest things; a tumor or lesion on the brain, and multiple sclerosis. There was an abnormality that I’ll name a little later here. Parkinson’s was ruled out clinically. So now it’s down to diabetes, idiopathic neuropathy, or “other.”
So, end of story, mostly, is that I have ataxia (cerebellar atrophy), neuropathy, peripheral neuropathy, and cubital tunnel. We just don’t know what’s causing those yet. I’ve contacted a relative if he knows of anyone on his side of the pond with similar disorders, but I sure as hell can’t remember anyone on my side of the family having anything like this.
My arms and legs are getting weaker, and it’s damn near impossible to stand more than 5 minutes. My right hand and arm are pretty unusable, but my left side is a little better. I’ve had to make some modifications to my car, including a suicide spinner (look it up), an extension for my turn signals, a “lazy-susan” for my ass so I can swivel out, and a beast of a bar that inserts into the door handle to help me out of the car.
Home is getting interesting. I’m sitting in a hydraulic chair at the moment, that tilts forward and lifts so I can get up a little easier. I’ve replaced some of the doorknobs with door levers. Got a couple of those grippy/picker-upper things that I chase the dogs around with. I have this torture device so I can slow down the muscle loss. I have 28 canes, so that’s not an issue, but I may be looking at a walker soon. And I have pouches on my belt, because it hurts my hands to much to reach them into my front pockets. Writing has become ridiculous, while my hand refuses to do what I’m telling it to do. I can type, but it does start to seriously hurt after a while.
I was depressed for about 2 minutes when I realized that I’m never going to get better, only worse as time goes on. Then I thought, screw this. If I can make my own wonky inventions, and cheats, and I’m not dyin’ or anything, things are good. But my dreams of becoming the world’s only a bowling/ballroom dancing/card thrower champion are pretty much shot. I’ll just keep some humor and a positive attitude through serious medication…heheh…
My wife, however, is totally freaked out. She’s trying to modify the house, or get it sold so we can live in a one floor house. Kind of overreacting there. I joked about having my walker all picked out and she started crying. And if you look up ataxia, I told her at least she was guaranteed to always be smarter than me. 🙂
Anyway, so while I will still post from time to time, I have to give up something else to do with my hands that day. I can do one, or the other. So, don’t cry for me Argentina (and screw you if you don’t get the reference. And if you say you’ll pray for me, I will personally whack you with my cane. If you want to help, come over and rebuild my deck. Or get McChord Air Force base to quit flying over my goddamn house. They come down now so low, that I can see the passengers, the color of their hair, and occasionally sneak a peek at what they’re reading.
And if someone tells me I have to give up my pipe, or relent and go to the VA hospital , I’d rather die on the street. While having my toenails pulled out. Knowing the VA hospital, they’d probably have my ears pulled off instead, and take someone else’s toenails out.
And I absolutely swear to NOT upload the MRI scans to my Flickr account…unless I can get a scanner big enough.
Best wishes to you all, and Facebook readers, I don’t see your comments. These posts are just on my blog and are automatically fed into Facebook and MySpace.
Here’s some links I’ve used to scare the crap out of myself:
- National Ataxia Foundation
- The Neuropathy Association
- WE MOVE – Worldwide Education and Awareness for Movement Disorders
Here’s an excellent link explaining what it’s like to choose between typing or doing something else with my hands: The Spoon Theory written by Christine Miserandino | But You Dont Look Sick?