CAPOS Cerebellar ataxia

Updating the updated update!

Hello my readers!

I am updating, again, my older blogs to make them readable, enjoyable, fathomable! This blog was originally posted July 16, 2015, and updated some two years later. I am now updating it for a third time on November 23, 2020. The second update was, to put it bluntly, atrocious! It looked like I obviously copied a whole bunch of stuff, putting them here and there without consideration whatsoever! It is no wonder nobody liked or even commented on my blog, heck… did anyone even read it?!

A Craig’s Notes version of ataxia: Picture this: you are standing up, not leaning on anything, yet, suddenly, you start to sway, or maybe you fall over entirely. Maybe you catch yourself falling, and grab on to the counter, the table, the person next to you. That is ataxia… you are also jerky in walking, stumbling. If you lean over to pick up the $20 bill someone carelessly dropped, your forward motion might keep you going in that direction, and you’d fall over… to me, these things also happen when sitting!

To refresh your memory; I have a rare syndrome that is called CAPOS; Which has five distinctive parts: Cerebellar ataxia, Areflexia, Pes cavus, Optic atrophy and Sensorineural hearing loss.

That is quite a lot; a full deck, an overflowing cup of coffee, a challenge that is challenging me, and everyone I love, everyday.

My goal with all my blogs is to educate you, and thus educate myself, about CAPOS and life around CAPOS. Okay, so, what is Cerebellar ataxia? Let’s break the phrase up first:

The Cerebellar, AKA Cerebellum, Gray Matter, is a small part of the brain that does a great deal of things! Chief among those myriad of activities is its ability to plan, execute and change movement of the body, the limbs and the eyes. The cerebellar has its “fingers” in a few other mental “pies;” including motor learning, motor control, attention, language and emotional responses.

As you can see, I hope you do, the cerebellum is basically focuses on movements, motor control and motor learning.

Now, turning to the ataxia part of Cerebellar ataxia; what is ataxia?

Wait, just a tiny question first: Is there just one type of ataxia? Hell no! As there are different fish in the sea, there are many different kinds.

Okay, Ataxia has quite a few issues:

  • Poor coordination
  • Unsteady walk and a tendency to stumble, falling over just for the sake of gravity, posture issues
  • Difficulty with fine motor tasks, such as eating, writing or buttoning a shirt
  • Change in speech, slurred speech, imprecise pronunciation
  • Involuntary back-and-forth eye movements (nystagmus)
  • Trouble eating and swallowing
  • Tremors
  • Heart problems

To give this copied list a human connection I’ll elaborate for you:

I have difficulty standing and standing up. It is common for me to “plop back down” whenever I stand up for a long period.

Jerky movements, I can twitch and fumble like the best of them!

Balance coordination, I can and do fall over when standing, sitting, bending over.

I walk drunkenly, oh yes I do! I’ve been approached by a few law enforcement officers over the years. Check out out The Police file for a real life confrontation!

I can trip over a grain of bread on the top step of my porch! Oh that is painful! I quickly get up, and look around furtively, hoping no one saw that!

I must hold on to the railing while going up or down stair, my survival is dependent on it!

I’ve also fallen out of chairs, out of busses, out of cars, out of bars, I even fell out of a moving car, right into a bar… to the raucous applause and catcalls of “Norm!”

My handwriting is becoming messier, I can’t read my own writing!

My speech, whenever I try to talk, is becoming much more slurred inflection is up and down. On a good day, I can sound like Fred Rogers, Axl Rose or Kermit the Frog, depending on my mood. Other days, I sound more like a mumbling mumbler trying to jumble together words to grumble a humble conversation with the wife.  If you didn’t get that, neither did I, nor the wife!

Vision problems arise: I have blurry vision, problems reading from word to word or following moving objects. I studied this in university, Psychology of Attention, and I am damned if I can remember it is called.

Increased fatigue is another issue that I’ve recently become acutely aware of! I can become fatigued just from standing and walking too much! Or what happened last week, I want top drawer when my intervenor arrived to make about six or seven phone calls, after a long discussion with one Doctor’s office, my mental fatigue kicked in, saying, that is enough! With any type of fatigue, I need to “concentrate on” the specific task at hand, which tires me out!

I think that is enough for now! I need some movement, even if I fall down! Enough sitting!

But, I will ask you: do you think Ataxia is a Disability? Why or why not? Using examples. Your answer should be 300 words long, doubled spaced, due on November 20, 2020. There is no need to use your wand. Begin.

Remember to Like, Share, Give, Be Happy…

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