Lions, Tigers, Bears, and Neuropathy, oh my!

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.”

Ataxia MRI

Diagram showing MRI scans of two brains. The brain on the left shows atrophy (shrinkage) of the cerebellum. The brain on the right shows a normal cerebellum.

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…

U-Step Walking StabilizerMy 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:

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?

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8 Comments

  1. John Good says:

    Jack –

    Man, I don’t know what to say. But I really hope you can stay in touch; you’ve always been like a brother to me, and I love you like one. Keep me posted on your condition, k?

  2. marcela says:

    Hi Jack. I have recently noticed some changes and had some MRI’s done last year. It seems that I have the exact same thing that you have. My Cerebellum is also shrinking but I am still totally functioning at this stage. I have been to see the Neuro as well as the top 15 or so Neuro’s in australia and they can’t make a diagnosis. The interesting thing is that my father has the same condition and so did my grandmother although her illness was more related to frequent mid ear infections. My father is now in a wheelchair but his brain is still functioning well apart from some little memory hiccups every now and then. Just wondering if you are Coeliac or have been genetically tested for coeliac disease. Have you had any tests done on your Cervical Vertebrae or spine and if you have, has this made a difference.

    • Jack says:

      There is nothing worse than writing a huge reply, and a cat smacks your keyboard, and the reply disappears. So I’ll keep it somewhat short this time.

      No on all three questions. Genetic testing is very expensive and won’t really tell me much. I’m don’t have any kids, and I’m not planning to have them any time in the future. I could walk out of my house and get hit by a bus today, or I could die 50 years from now, so I’m okay with it.

      I do my exercises, keep a positive attitude, and most importantly, a sense of humor. 🙂 My co-workers could be afraid to say something hurtful to me, or just wait to see if I keel over and die, but because I keep a sense of humor, that generally doesn’t happen. A smart ass co-worker has been known to hid my walker from me. Mike, you…well, you know what I normally call you. 😛

      The only thing that sucks is the neuropathy, with the sliding skin sensation, and it tends to wipe me out for a couple of days. I can feel it coming and that starts an anxiety attack. Yay Xanax! My ability to walk goes bye-bye and I can’t keep my limbs still.

      So a life as a professional bowler or surgeon is pretty much out of my future, but I can coast downhill on my rollator (walker with wheels). Okay, so I tend to crash, but hey, it’s a pretty fun for few seconds. And I get good parking spots. And I can whack people with my cane if they piss me off. My insurance did pay for a rising recliner, so now I can be lazy with good reason. Okay, I was always lazy, good reason or not.

      Plus I have an excuse for my short-term memory going to hell. “My brain is shriiiiiiinking!!!” People like it, because they can tell me the same joke twice in a week, and it’ll be funny every time. 🙂

  3. Matt says:

    Hi Jack, Just came across your post and really liked it. Of course not your condition but you attitude. I have some of the same symptoms as you and wonder what will happen, while I track down the cause. Only hope you are feeling well enough to continue to post and are still around your loved ones. God Bless, Matt.

    • Jack says:

      Hangin’ tough Matt, and sometimes I can get a laugh out of it. Or a scream.

      I just read one of the meds I’ve been taking for a long time can have ataxia as a side effect, except the last scan also showed a magical sprinkling of head trauma/migraine debris; so we’re kind of ruling that out. Besides, the med is for my bipolar disorder, and I long ago decided that if I have a choice between being crazy again, or being in pain, the choice for me is easy. I can deal with pain. Pain only hurts me. Crazy hurts everyone around me.

      Genetics, and external factors are both causal factors for ataxia and neuropathy. My dad just died of a brain tumor, and so it’s not far-fetched that between concussions and genetics, that’s a more likely cause. Gene testing is too expensive, so it really doesn’t matter; I’ve got it, I’ll deal with it.

      I do miss running though, I hate walking so damn slow, threading needles is frustrating as hell, and I love McDonald’s fish sandwiches so tartar sauce has become my enemy. I keep ending up wearing it. I did get a cellphone with a real keyboard, instead of an onscreen keyboard, and it also hooks into my computer, so if I do have to text, it’s a lot easier. You should see some of the wacky ways I’ve come up to work around stuff. 🙂

  4. Matt says:

    Great to hear back from you so quickly. Really appreciate that. It was 2.5 years since your last post. It’s hard to find consistency and longevity these days on the Internet. Everybody’s in.

    Ok. Got home today from my first MRI for head and additional for neck. Have no idea what the results will be but that was one noisy machine. At first it was uncomfortable because it was a large closed version. But after I got over the loud noise, I felt a bit more comfortable by the time the spinal and neck imaging took place. Hope I don’t have to do it again. But over experience was painless and that’s always good.

    I had a mcDonalds Premium Angus burger last night. Down here in Sao Paulo, Brazil, MickieD is a little expensive. Anyway, I understand your urge.

    Stay well Jack and fight the good fight. Oh, final question for you. You don’t have to answer if you don’t want to. I was wondering if you’ve ever researched the benefits of medical marijuana for never pain. There’s various stuff about all of the net. I’m 50 and don’t use marijuana but was very curious. Here in Brazil, it is illegal and I wouldn’t be able to get access to it anyway. What’s your opinion?

    • Jack says:

      I guess my answer to “medical marijuana” is the same as to any “natural medicines” used for treatment. The problem with these is that they’re not regulated for consistent quality, efficacy, or safety. So even if you get it from the same supplier, the efficacy could vary regardless of if you smoked it or used some fancy gizmo to take it in.

      I’ll start with this. I grew up in Indiana, and there were a lot of farmers. We’ll take corn as a crop and some of it will eventually be used for canning. The best corn will be used for brand name companies. Not so good corn, or “field corn,” will be used for generic or store brand corn. So what criteria determines which kind of corn is what? Is one harvest 100% genetically identical to the other? When you eat a cob of corn, do you get the exact same amount of carbohydrates and calories as if you ate another cob of corn.

      So a “unit” of marijuana is a grown product, not produced in a lab, just like corn. That “unit” is scientifically impossible to be identical to another “unit” of the exact same harvest. Remember, there’s the premium corn and the field corn, and there’s no clear division as to where one ends and the other begins. If you smoke it, well, as a tobacco pipe smoker, I can tell you that the amount of nicotine I take in is going to vary right down to puff from puff, tobacco to tobacco, even kind of pipe to kind of pipe. Even if I use some fancy gizmo, each breath I take varies.

      It boils down to your physiology and mindset. If you really, really want it to work, clinical tests have shown that even a placebo will help alleviate symptoms for anything. If you’re taking something like Topomax for the tremors and can’t sustain the sudden weight loss, it might help with your appetite, but stick a chocolate parfait in front of me and that does wonders as well.

      THC (tetrahydrocannabinol) is the the active ingredient in marijuana. I think if they ever figure out a way to isolate the THC by itself, and produce it consistently, then we’ll have something useful.

      • Matt says:

        Jack,

        Thank you for sharing your very sober commentary on the corn trade and marijuana investigations 🙂 I totally agree that trying to smoke marijuana would not be very efficient for all of the reasons you sited. THC from a med lab would be the best way to go. I have no perscription or access so this is not an option. But always continuing my research.

        My background is in the financial industry. I was a trader for several decades and now I am more on the financial technology side, consulting and publishing some of my own trading tools/signals. My only exposure to corn was via Corn futures. As a farmer you probably watched these prices coming out of the CME for hedging and selling purposes. My wife was raised on a farm down here in Brazil and my father-in-law still runs a small milk farm.

        Back to PN. Last week, my symptoms took a break for approx 1.5 days, but are back, and to varying degrees, with a lot of movement around my body. Results come in from MRI today and I will package everything up with blood work, and visit the neurologist later in the week.

        I’m going to continue reading and researching in preparation for whatever comes so I can heal myself or at least cope better.

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