Why Do We Have To Work So Damn Hard?

“I want to do that,” I said as I nodded to the couple dancing in the center of the dance floor. “I would really love to have the ability to move like that.”

“So what’s holding you back,” Carol asked over the music?

I gave her my best “DUH!” look as I lifted my arms in front of me to shoulder height with wrists flexed so my fingers were pointing at my face. “Because”, gesturing with a downward sweeping motion as my hands moved from head to toe, “I haven’t figured out how to make this,” then pointing with my right hand to the couple, “move like that!”

“You just need to learn the steps and let go Brother,” she replied as she imitated a lady’s Waltz pose. “So why don’t you tell Camelle you want to work on that during your next lesson?”

“We have been. We started on it a couple of weeks ago but I haven’t been able to get it yet. I can see what she wants me to do. C’mon, look at them! I “know” what they are doing, or at least I think I do, but when it comes to making me do it – I get zip – it ain’t gonna happen in this lifetime! I just can’t seem to get my body to do it.”

Why do we have such a big problem trying to understand so many things? Is this something real or is it just us? Why do we have such a difficult time with even the simple things?

It happens even when you stuck with it and figured out how to do one of those simple little things. Whew… that felt good and you leave the class feeling great! Then two days later you are back and warming up to do it again when you discover – you can’t. You’ve forgotten the steps. You can’t even recall how to begin. “How did that go again,” you ask.

“Like this,” a friend shows you.

“Oh that’s right,” you reply, intently watching and mentally going through the motions. Seconds later you try it yourself and nothing. You’re stuck. You’re feeling oh so very stupid.

“Want me to show you again,” your friend offers?

“I guess. I can’t seem to get started. Two days ago I had it nailed. But today it’s like I’ve never done it before. It’s gone… poof… like a dream when I wake up… gone,” you reply as the frustration and embarrassment build.

We are restricted by this problem. No matter how hard we try we just don’t seem to have much luck. A quick little review of what we all learned last week, yep, they got it, and they move on to whatever is next. But us? We can’t move on. We’re left confused, depressed, frustrated and alone – all the fun is gone. So what do we do about it? Well, all too often we sit on the side lines watching and wishing we were out there with them. Then, a few minutes later, we turn and walk unnoticed out of the room feeling like we just want to curl up in a darkened room and cry. Another painful reminder of your disorder has shut you out of the normal side of life once again.

This is a common problem and comes with common questions, “What the hell is happening to me? Why can’t I remember this stuff? Why can’t I do today what I did a couple of days ago? Why does it take so much effort to learn and do even simple little things? Why must I re-learn this same thing over and over and over again?”

Unfortunately this is yet another part of our new reality and it’s common in people who have cerebellar degeneration. So common in fact that in all the people I’ve worked with I have yet to come across one person yet who hasn’t had to deal with this problem to some degree.

Anyone with spinocerebellar atrophy, and possibly other forms of cerebellar degeneration, have experienced this for themselves and understand how it feels. So let’s talk about why we have come to be this way. Let’s look at why we have these problems and how we can effectively cope with this learning difficulty we’ve been gifted with.

There are some findings from recent research which provides some answers to what we, the patient, already know and the rest of the world is finally coming to realize. Because of the degenerative process within of our cerebellum, the way we assimilate and understand information has been altered; and not in a good way.

Patients with spinocerebellar atrophy have developed a “cognitive sequencing impairment”. What does this mean? It means that our brains, our cerebellums, have developed a difficulty in processing information. We have developed a problem understanding how to do some things; like a movement someone is trying to teach us. We see the movement, we recognize the movement, but for some reason we can’t figure out how to make ourselves do it. There are also times when we try to remember something we knew very well in the past, but suddenly the only thing we can draw is a blank until something or someone helps get us started in the right direction. Then, “DUH… how the heck did I forget that?”

Basically this happens because some pathways within our cerebellums are no longer there, or they may have become altered and don’t work correctly anymore. And to take this one step further we have some difficulties on the other end of the stick as well. Not only do we have problems with our thinker remembering and “letting information out”, it also has some problems with “letting information in”. We’ve developed problems with forming new memories and that answers the question, “Why can’t I remember this stuff?”

In a short recap we have developed difficulties with:
1. Interpreting and understanding new material.
2. Learning new material and committing it to memory.
3. Recalling some memories.

So, can we change any of this? Yes we can. What I have found to be true is that we can learn new things but we need to have it simplified to give us a better chance of getting the great thinker in our heads to approve it. Then the next part of the equation is repetition over a short period of time to make it stick somewhere in our noggins. Keep it simple then repeat, repeat and repeat. Gives a whole new meaning to, “Honest honey, I don’t remember you saying that.”

Our thinker requires a new understanding folks, along with some rewiring, and we possess the ability to do just that! This process is called neuroplasticity; the ability of the human brain to change and learn new things as a result of our personal experiences. One way to think about going about it is that we need to experience more to get our brains to remember it. Could be a bummer right? Well how about doing as many of those experiences in a happy, pleasant and fun way as possible to give yourself a better chance at sticking with the task? And that is especially true of the movement skills I’m promoting.

Do we build new pathways in our brain or do we use what we have left up there in a new way? I strongly suspect it’s both but any proof of building new pathways will certainly be something for the future to determine. However it happens, it takes time and longer than the “normal” person. So please, be patient with yourselves and try to keep things a bit more simplistic when you’re tackling new stuff. In effect, we are creating memories and learning new movement skills very similar to a toddler – not like a drunk. (Does this mean we can get what we want by pouting?)

When you combine this problem we have developed within our brains along with the ataxic postures and movements we experience it helps explain some of our movement difficulties. These combined problems have, in part, caused us to become predominantly reactionary in our movements instead of being naturally anticipatory. We have forgotten how to be anticipatory because some of our memories, some of our learned behaviors, are not available to us thanks to our shrinking cerebellum. It’s like that computer sitting in front of you. You know you have a certain file somewhere on your hard drive but can’t get to it. Maybe you just haven’t used it in a long time and you simply forgot where he put it. Or maybe your hard drive was infected with a virus and it was wiped out. Or maybe you can find the file but you can’t open it. Basically, these same types of processes are going on inside of our cerebellums.

What do I mean by being reactionary as opposed to being anticipatory with our movements? Simply put, when you move in response to what other people and other things are doing in your environment, when you are moving to avoid some problem they have created, you are moving in a reactionary frame of mind. You are not moving as you really want to move, rather, you are moving how you are being forced to move by everything else going on around you.

Moving in an anticipatory mode means that you are in control and moving where you wish to go despite what everybody else is doing. You are calling your own shots. You are moving in your own way, and in your own time, towards your chosen destination. While you are moving in this manner you take in everything that is happening around you and make corrections to avoid them before they cause you a problem. You are anticipating your movements by understanding your environment. You are anticipating what you are going to do instead of being forced to react to what he has already happened.

There are two independent factors which has caused this to happen to us. First, our anticipatory capabilities are blunted in part from our acquired maladaptive learned postures and restricted movement patterns. Just look at how rigid we stand and walk. Because of our growing clumsiness we have assumed postures and movements in an effort to compensate for that clumsiness, and most of the time, those postures and movements do us more harm than good. And so as not to repeat myself here, please refer to what I have written in other areas on this topic to refresh your memory. Therefore, some of the problems we have with anticipating our movements come from our poor coping skills. But there is some good news. This is the part we can learn to improve!

The second reason we lose this anticipatory capacity is clearly not within our control. Our shrinking cerebellum causes this problem to occur. “Predictive feed forward adaptations require cerebellar control, and the subjects studied with cerebellar damage had reduced and sometimes absent adaptation to a new task they had been asked to perform.” (Bastian) And now you are asking, “Doc, what the hell does that mean?” In short, it means that our cerebellum is having difficulties interpreting what our joints and muscles are doing and how it is supposed to make them work together as a unit. Also, our cerebellum is having a hard time interpreting the effects of any internal and external forces we are experiencing. Still confused? Is it still a lot of mumbo jumbo? Let’s try an example.

Imagine someone asking you how long it will be before their baby will start walking. You look at the baby and note that it is about 6 months old. You explain to the new parents what they should expect and how the baby will gradually develop. “In the beginning”, you explain, “Your baby will be learning some very basic skills. From learning to crawl, to standing up, then taking that first step, all of that will probably take the next six months. You’re normal baby will do just fine so be patient. And sure as rain is wet, one day they turn around to see their baby standing while holding onto a chair leg bouncing a diapered butt. Then things begin to happen more quickly and before they know it they’re chasing after a toddler full of “too much energy”! In many ways we are learning just like that child. One difference is that baby’s cerebellum is maturing and ours is degenerating.

Let’s look at that process a little bit closer to highlight another problem we have. An infant wants to talk back to you as you are talking to it. The infant will watch your face and mouth as you speak. It will study your facial expressions, how your lips change shapes, listen to the sounds you make, and will also touch and feel your face and lips in effort to understand what you are doing. Then it will try to mimic you. That infant is trying to understand how to make its mouth move like yours and how to make those sounds come out of its mouth. To do that, the infant must start with some very basic movements, sounds and gestures. We all know what those are. We’ve all sat with an infant and “played those games” with them. We all recognize that one of the first sounds that a baby will make in an effort to speak is “da da”, because this is one of the easiest sounds for them to make. The sound “ma ma” takes a little bit more coordination and is therefore more difficult so it comes later.

They are developing new pathways in their brains as they go about learning how to speak. They are forming new memories. Now think about yourself. For those of us who have developed a speech problem secondary to cerebellar degeneration we have to do much of the same thing, but fortunately we aren’t starting from the beginning. For the most part we merely need to do three things:

1. Slow down our speech patterns.
2. Properly and clearly annunciate (pronounce) each syllable and word.
3. Speak with more force and stop being lazy when you speak.

· Imagine the person is one the other side of the room and you want to make darn sure they understand everything you’re saying.

And now with regard to our other movements and what’s happening? With the ongoing degenerative process in our cerebellum some of our neural pathways are not there like they used to be. In effect, SCA has destroyed some of our movement memories! For example, we learned how to catch a ball, and then throw that ball; a very complicated set of movements. But, now we have a problem with it.

Let’s go to the adolescent child and you’re teaching that child how to catch a ball. You know the problems that child will have. Think about it. Aren’t you having some of the same problems? Like that child, many people with SCA cannot properly coordinate complicated movements. The more complicated the movement, the less coordination we have. The more body joints that are required to make a series of movements, the more problems we will have when trying to execute the movement. We have less control because our cerebellum lost some of its ability to finely coordinate all of the joints and muscles required for the total task which we are trying to accomplish.

Here’s something to consider. There aren’t very many “simple” movements. When you look into the actual complexity of any movement, I mean the total movement from the neurological input to the combination of the muscles and joints involved, simple movements just AIN’T that simple.

For example, you want to “simply” scratch your nose. To do that without hitting yourself in the face, to delicately find the itch, there are muscles which move your arm towards your nose, and at the same time, other muscles are slowing your arm down so your fingers stop at just the right place. And keep in mind, at the same time your arm is taking your hand to your nose, your fingers are moving with different muscles controlling them in two directions as well. Next don’t forget how your head and neck moves during the process. Hey, if you want to see a bunch of muscles which lead anatomy students to the coffee pot when they’re trying to learn their names and functions, go look at how many are in our necks. Now take all of those muscles, joints, nerves and brain cells which are involved when you “simply” scratch your nose and you’ll begin to understand how complicated even the simplest movements really are.

Our adult cerebellum has to be re-taught how to coordinate and control in much the same way as the child’s cerebellum when learning to catch the ball. Think about what how slow and simple you had to keep things when it was your child you were teaching. Surprise, surprise – you’re a kid again!

If we want to do some of this movement stuff again we have to break those movements down and re-teach our cerebellum what we want it to know – just like that infant has to teach their cerebellum for the first time. We have to relearn the information which has been lost in our cerebellum. We have to re-create and make new memories in our fight to get some of our normal back. Like that toddler learning how to walk we have to break this stuff down so we can understand it. Then just like them we have to practice it repeatedly to ultimately form a memory. Once it’s a memory then we can begin to perfect it and eventually gain the ability to repeat it without thinking about it.

Quiz time: How many toddlers do you see sitting around complaining of what they cannot do? And when they find something they cannot do, something they want to get in to but don’t know how, what do they do about it?

Second quiz: How many adults do you see sitting around complaining about what they can’t do? And when they find something they cannot do, something they would like to do, or something they used to do, but don’t know how, what do they do about it?

How different were your answers and why?

So, why do we have to work so hard?
We’ve been robbed BUT we can still improve, we can continue to do better and we can learn to keep more of it.
However, that takes us getting off our butts and sticking with it.
Repetition and consistency in our efforts just like any “normal” person must do.