INHERENT PROBLEMS AND ISSUES

As our physical disorders have progressed, so has our manner of moving and walking progressed; and in a negative manner I might add.   Some of the changes we are acutely aware of, and some of them we don’t realize until someone or something calls our attention to them.  At any rate, some of our movements have become quite abnormal and cause us many unique challenges as we attempt to go about our daily routines.  Let’s try to indentify some of the things we have come to do as a result of our disorder and then later work towards a remedy to correct the problem. 

What I list may or may not apply to each of you, but is rather a summary of some of the common issues which I have found to be true for most of us.  Further, this list is not necessarily complete as per some of the clinical information available, but I believe it to be accurate in its brevity.  Working from the head to the feet, let us begin to identify some problematic areas of interest which cause us to have some difficulty with our movements.

PERSONAL PERCEPTIONS

In this I refer to our self-esteem, our understanding of what our capabilities may be, what our future fate will be and what we can hope to achieve.  To some degree, we all have some depressive thoughts to some or all of these; and they can all be justified.  Stripped of much of what life was to us before our disorder made its presence known, we have been forced to modify our thoughts and desires a great deal.  And with the progression of our disorder, our lives have become even more restrictive and challenging, thus, our frustrations also continue to grow.  How do we deal with this and where do we go for help?  That’s a loaded question isn’t it?

I have struggled with the mental part of our disorder just like the rest of you, and sometimes I have failed to handle it very well.  While I found some relief from the usual array of venues such as family, friends, support groups and a brief trial of anti-depressants, I found the best therapy for me was to do something positive for myself.  I needed to feel useful again; I needed my self respect and self esteem returned to me.  But first, I had to find it within myself, and that took a number of years to accomplish.  And, I’m still working on some of it and probably always will be. 

For me, the single most important thing that helped me reverse much of my negative personal perception was regaining some normal movements.  Hands down, that alone did more for me than anything else combined that I had tried.  The simple act of walking without thinking had become something of a faded memory.  Constantly I had to think of how I was moving, how I could no longer move, and the limitations I had to endure every day because of my increasing clumsiness.  Embarrassed, often humiliated, I became more and more of a social isolate in an attempt to avoid public places and unpleasant experiences.  Hence, the lack of good movement skills placed me into a “can’t do” attitude and belief system which continually robbed me of my happiness.  So, is it such a stretch that regaining some good movement skills could, and did, help reverse my poor attitude? 

I now firmly believe in the following concept.  If anyone has any form of disability which limits their movements, especially if they have a degenerative disease process, the single best thing that will help them, and provide them with an improved quality of life, is to teach them movement skills.  For if they re-learn how to efficiently move, and thus become more independent, many things will automatically occur within and around them.  Their confidence level will rise and their self-respect will begin to return.  They will not be as embarrassed to venture out into public places.  Thus, they will begin the process of re-socialization.  They will be happier and have the ability to find more joy in their lives.  They will begin to view their present and future situation in a more positive light, and opportunities will begin to present themselves.  Their coping skills in every other part of their lives will improve and they will begin to be more functional in every respect.  All anyone has to teach them are the basic rudimentary acts of walking, the how to’s and why, and they will do the rest on their own.  I think it’s that simple of a starting point because I’ve also lived it and helped others achieve the same.  Give us the gift of movement and we will fill in the blanks.

The want and desire to move more normally, to strive to be more normal and to realize the need to get better, begins in your head, your mind.  You must first want it more than anything else in the world.  You must somehow believe that you can do better than you are right now and you must prepare yourselves to the best of your ability.  This will not be an easy task and it will take time - lots of time and extreme effort of your part.  It will also be one of the most frustrating things you will ever attempt, but it will be worth it.  Once you push through the muck, get over the “hump” and begin to sense the new you, there won’t be any turning back.  You have to believe in the possibility and take the chance on yourself.  It all starts in your mind.

WHERE IS YOUR HEAD

If you could watch yourself throughout the day you would be amazed at how much you look at the ground!  Neck bent forward, we cast our heads in front of our chest and our eyes peer at the ground directly in front of ourselves.  Why do we do that?  Simply put, it is a learned behavior we have adopted.  No longer do we trust our feet to go where we want them to go, so we watch the ground to look for anything which might cause us to stumble and fall.  Our steps have become an awkward shuffling motion.   This causes us to look at the ground to look for any problem areas on the ground that normal people just step over or through.  And why do we do this?  Simply put, we don’t remember how move properly.

When you bend your neck forward, there are some basic principals that come into play, and the end result resides in your feet.  With your neck bent forward, your head is projected in front of your body and your “center of stability” also shifts forward.  If you do nothing else with your body, and just move your head forward while looking down, you will note that you are now standing more on the balls of your feet and leaning slightly forward.  For the “normal” person that is not so bad, but for us it can spell disaster because we don’t know how to handle it.  Thus, as we shuffle forward with our head forward, our momentum also goes forward, and if not corrected, we will begin to fall forward in a stuttering shuffle attempting to “catch” ourselves. 

This brings about the next learned behavior we have adopted.  To counteract the forward weight shift caused by our heads, we then stick our butts out behind us.  What does that do?  It does the exact same thing in the opposite direction as sticking your head out.  You are moving some of your weight around to put you in better balance.  In pushing your butt out, your center of stability moves back towards the center of your body, your weight shifts closer to your heels on your feet, and you then feel like you are more stable.  But - your posture looks really bad. 

Here’s something for you to try to prove it to yourself.  Stand up straight with your eyes looking straight ahead and feel how your weight is distibuted on your feet.  Now bend your head down and feel the difference in your feet.  Raise your head back up then stick your butt out.  Where did your weight shift on your feet?  Yep, towards your heels.  Now, with your butt sticking out behind you, bend your neck and look at the ground.  Did you feel your weight shift forward on your feet?  And you felt more stable on your feet as well, don’t you?  But what is the price your posture paid and what problems will you face?  The next time you are out in public watch people walking with walkers, leaning over shopping carts, etc., and observe how they are walking and note the problems they are having, then think of how those same things apply to your situation.

YOUR EYES LEAD YOUR MOVEMENT

When it comes to your balance (equilibrium) your eyesight is the most important input your brain uses to keep you upright.  You can test that statement on your own.  Stand upright and close your eyes.  For those of us with ataxia, we begin to sway like tall grass in the wind.  This is why you have to lean on the shower wall while you rinse your hair.  And, not only have you closed your eyes and lost the most important sense you have for your balance, but you’ve also moved your head forward didn’t you.  Hopefully you braced yourself attempted that dare devil move.  Now is it starting to make a little more sense to you?

The simple act of looking where you are going does two very important and simple things.  One, you maintain your proper center of stability by not moving your head forward.  Two, you are allowing your most important sense to aid you with your balance and movements by watching were you are going.  And how wonderful it would be to actually see where you are going for a change without having to first stop, brace yourself, and then look up.  How many of you have done that in a parking lot, at the mall, in a restaurant or simply walking across the lawn?  I used to do that as well.  I had to think about it just like you.

UNEVEN SHOULDERS

We not only need to concern ourselves with our posture to the front and rear; we also need to concern ourselves with our posture to the sides as well.  Our side posture begins with our shoulders and can be easily checked for proper alignment in a mirror.  Stand in front of the mirror and look at your shoulders or have someone look at them for you from approximately 6-10 feet away from you.  Are your shoulders level?  Look for the subtle drooping of one side.  Or perhaps you are holding one higher than the other because of the way you are leaning on your walker or cane.  Once you have identified which one is the problem, correct it and stand with your shoulders level.  If you have routinely walked around with uneven shoulders having them straight will feel odd.  Get used to it and work at keeping them straight.

Here’s why.  Do the same exercise you did with your butt and head, but this time you will be shifting your shoulders from side to side.  Stand straight with your butt in and head up.  Now droop one shoulder down and feel the shifting of your weight on your feet.  You should note how that little downward shift of your shoulder caused your body weight to shift towards the side of your foot.  Be careful with this one because leaning or stepping sideways is very, very, unstable for anyone with a balance problem!

You don’t realize it, but that little droop of your shoulder is having a dramatic effect on your walking ability.  With your shoulder drooped, even a very small amount, the center of your stability shifts to that same side on your feet.  This causes you to step more onto the outside of your foot which creates more instability.  If you happen to be on an uneven surface which slopes to that same side, even more of your body weight shifts. 

Now let’s add another factor.  Let’s assume you are also attempting to turn in that same direction.  You need to understand that an ataxic walk will also naturally cause some of your body weight to shift to that side as well.  So, now we have our shoulders, ataxia and a little slope on the ground, causing some of our weight to shift to one side.  And don’t forget, remember how you walk with your eyes looking down at the ground!  That means even more of your weight is where it’s not supposed to be - and you feel yourself starting to fall! 

I know you know what I’m talking about because we have both been there too many times.  And remember how you blamed this and that?  Now does it make a little more sense?  Let’s work on the solution to help you avoid this tragedy, and help you keep your head, shoulders and butt where they are supposed to be.

But, before we do that, let’s tie your shoulders, chest and head together so to speak and revisit our drooped head as we look at the ground.  You have proved to yourself that bending your neck forward to look at the ground causes your center of stability to shift forward on your feet as your head moves out in front of your body.  Now let’s apply another real life situation to this problem.  Often it is not just our heads which protrude forward, but it is also our entire upper body.  Go back to standing straight upright then bend your neck forward as you did in the previous exercise.  However, this time concentrate on your shoulders and lean them forward just a little bit.  Do you feel more weight shifting in your feet?  Just like your head, if your shoulders go forward, even more of your weight is distributed onto the forward part of your foot, and the more unstable you become.  This is yet another example of how we make things worse for ourselves, and we do it everyday.

THE SHOULDER AND BUTT CONNECTION

Our posture has become very poor and our coordination has deteriorated even more because of it.  There are two basic reasons for our poor posture.  The first reason is decreased muscle tone.  We do not do enough muscle strengthening exercises.  The second basic reason is allowing our disease process to control us.  These two things are so closely linked together.  They are so obvious, yet these basics continue to escape the thoughts of many. 

How we came to do this is simple.  We have gone through a very gradual decline.  We gradually lost some muscle strength from lack of use.  We also gradually lost some ability to perform some normal functions because of our decreasing strength and increasing clumsiness.  And, as we have become clumsier, we have stopped trying to do certain things and then have gotten even less exercise.  It becomes a vicious cycle.  We grow clumsier, so we do less and our muscles become weaker, which causes us to be clumsier, then we get weaker...and it keeps going.  One problem continually feeds the ill effects of the other.  Where does it stop?  When do we stop blaming it entirely on our disorder? 

Why don’t we start now and begin to correct the problem.  First, remember that we are designed to walk upright.  So straighten up and start the change for yourself!  Here is a simple way and everyone has immediate access to it right in your own home.

We are going to use any smooth wall to tell us what our proper reference line feels like.  Then we are going to apply this reference line in our movements when we step away from the wall.  Begin this exercise by backing up to the wall.  Stand with your heels against the wall (or as close as you can get them) then lean backwards.  Rest your butt, shoulders and head against the wall and concentrate on how it feels.  It is important with this exercise to have someone look at your shoulders and tell you when you have them level.  They also need to make sure that your head is not leaning to one side.  Make sure that you are relaxed and not holding your shoulders up or pulling them down.  If you don’t have someone with you to check your alignment try to choose a wall across from a mirror so you can see if you are tipped on way or the other.  This is one time when you need to be as exact as you can be.  You would be surprised how the slightest leaning will cause such a big difference in your movement abilities.

With everything straight, move one step away from the wall and try to keep yourself straight as you were against the wall.  Your head, shoulders, butt and heels should be very close to being in a straight line.  This is your “line of reference” which most of our normal and natural movements are dependent upon.  Furthermore, this reference line needs to stay with you as you move in any direction.  Patience my friends, you must give yourself time and lots of practice to work through all of this.  It can be done!

HIPS AND KNEES

In our gradual decline we have lost the ability to remain relaxed and limber when we stand and move.  Instead we have learned to move with stiffened joints and shuffling steps in an effort to feel some sense of stability.  However, this actually works against us and contributes to an increasing number of mishaps.  A good analogy is to describe our movements to the Tin Man on the Wizard of Oz.  Do you recall how awkward he moved when his joints needed oiling?  If you don’t then watch that part of the movie to refresh your memory for that is how we are trying to move as well. 

Another resource we can use to see how we are attempting to walk can be found while watching a one year old toddler.  Watch them carefully as they are just learning how to walk, and keep watching them until they have mastered it.  When the toddler begins their movements, they make some of the same mistakes that we are making.  As you watch them progress, notice how they are lifting their legs and feet, shifting their weight, standing upright and bending their hips and knees.  And note what happens to them if they don’t do one of those things correctly.  And I’ll bet you can tell in advance when they are about to stumble and/or fall can’t you?  So why can’t you do the same for yourself?  Yes, we can learn from our children and grandchildren.  Are you starting to see how basic this stuff really is?

As the child learning to walk discovered, you have to bend your knees and hips in order to walk normally.  You have to lift your knee to raise your foot off of the floor, and thus allow your lower leg to swing forward to make the step.  In addition, you must transfer your body weight from one leg to the other in order to free up a foot so you can initiate that step.  If you don’t transfer your body weight from one foot to the other, you wouldn’t be able to move.  One of our problems is that we have become too weak and unsteady to shift much of our body weight and this causes us to have a shuffling walk.  Thus, in the final analysis, we have lost the ability to raise our foot up adequately from the floor to make a proper step.  Therefore, we walk like the rusty old Tin Man!

Here’s another exercise for you to try.  Use everything we have already talked about and stand as straight as you can.  Now start to bend both your hips and knees a little bit while moving straight down (towards the floor) – just a little.  Be very careful not to lean forward, backwards or to the side as you bend these joints – go straight down.  Then raise back up and repeat it over and over again and each time pay close attention to what is happening to the weight distribution on your feet.  If you are doing this correctly you will feel steady and your body weight will be more evenly distributed onto your entire foot – not just one part of it. 

If there is someone in the room with you have them pay close attention to how much your upper body is swaying as you do this.  What they will see, if you are doing this correctly, is that your upper body has stopped swaying as much as it used to.  In fact, you will have reduced your swaying by at least one half just by bending your hips and knees while holding the rest of your body in proper alignment.  Do you feel like celebrating yet?  Go for it!  You deserve it.

By far, one of the biggest problems you will encounter is with remembering to bend you knees throughout all of your movements.  Yes, all of them.  If you can remember only to keep your knees bent, just a little, you will move much better than you can imagine.  On this note, the other biggest problem you will have is with your eyes.  You will constantly lower your eyes to the floor without realizing it – time and time again.  You will grow tired of someone reminding you to lift your eyes off the floor and bend your knees.  Ultimately though, you will be amazed at how much better you are able to safely move when you do keep your eyes up and bend your knees.

AND NOW, THE FOOT OF THE MATTER

In this anatomical adventure, our feet hold the remainder of the key to our problems with our ill attempts to achieve coordinated movements.  There are a number of issues we must deal with when it comes to our feet, and our shoes.  In regards to shoes, make sure they are snug and fit well.  We require a wider based shoe sole which is also stiffer, such as a leather sole, for added support and stability.  The stiffer shoe sole will not flex as much and you won’t have to work quite as hard to keep your feet as steady in the early phases of re-learning how to properly move again.  Then as you progress you will be more comfortable in a more flexible shoe such as a sneaker.  If you don’t have a leather sole shoe which is comfortable don’t worry about it and work with what you have as long as they fit well.  But, please don’t try to learn this stuff with ill fitting shoes, sandals or flip flops.  Give yourself a fair shot at succeeding. 

And as you think about what I said in reference to the width of your shoe, you may not believe that an extra half inch in width will make a difference.  Believe me I have tried it both ways.  I will also add that each time I tried the more flexible and narrow shoe before I was really ready, I had to revert back to the slightly wider and stiffer shoe until I mastered more control and movement skills.  Sure, I could walk pretty good in the more flexible shoes, but I stumbled a little more.  And when it came to trying to dance in the more flexible shoes, I had all sorts of problems with my balance until I changed back into the stiffer shoes because I needed to have more control.  Gradually, I have been able to advance into the more flexible shoes for dancing.  The difference here lies in the degree of difficulty with the movements you are trying to learn and how much of a problem you have to overcome.   

Now back to our feet.  In our awkward unsteady stance we have developed the habit of standing with most of our body weight on our heels.  BAD, BAD IDEA!   In standing on our heels we essentially are only using the back part of our foot to support us and this makes us more unsteady.  Think back to all of the problems areas we have talked about.  Head forward, shoulders slumped, butt out, hips stiff, knees stiff and you are also standing with most of your weight on your heels.  Is it any wonder you are feeling clumsy?  And I ask you again, who is responsible for you standing like that?  You are responsible, and most of you can change all of this for the better.

Let’s again address this new body alignment by directing your attention to the only part of our bodies that normally come into contact with the floor.  The foundation of our support is our feet and we need as much of our feet involved as we can get.  That means that you need to stand with your body weight evenly distributed over the entirety of your foot – from heel to toe.  You need to use your entire foot to achieve the best support you can get.  To do this properly you will have to put everything else together in combination, such as:

1.      Keep your head up, and

2.      Keep your eyes looking forward, and

3.      Keep your shoulders level, and

4.      Keep your butt, shoulders and head in your reference line like you did against the wall, and

5.      Bend your hips and knees (lower yourself straight down), and

6.      Slowly shift your entire body forward and backwards until you feel all of your weight evenly distributed on your feet, then stop moving.

When you finally feel all of your weight evenly distributed on the entire surface of your feet you will feel steadier and you won’t be swaying as much.  Hold your pose and have someone check to see if you are standing with everything else as I’ve described.  Do not be surprised when they tell you that you need to adjust something.  Also make sure they check to see if your head, shoulders, butt and heels are pretty much lined up.  This is where the fine tuning comes in and it will be something you will constantly have to work on.  As you correct any problem area your body weight will also shift on your feet.  Relax and simply move your entire body forward or backward until you feel it correctly on your feet again.  Learn to know this feeling in your feet; and learn it well.  This position is your safest position and your feet are, what I call, “planted”.  Plant your feet and feel where your center of stability really is!

START MOVING FROM YOUR BELT BUCKLE

How do we move our entire body as a unit while keeping everything lined up like it is supposed to be?  This will prove difficult for many of you, just like it confused me until one day the “light came on” during a private dance lesson.  There are two basic mistakes we tend to make. 

The first mistake is leading our step/movement with our upper bodies.  When we advance our upper bodies before the rest of us begins to move, we immediately transfer more of our body weight forward onto the balls of our feet.  This creates a forward motion problem for us because we have just moved from our “center of stability” to an area of relative instability.  This simple mistake sets us up for a cascade of events and it goes something like this.  Our upper body is in motion, but the lower part of our body is standing in place.  However, our lower body is not just resting there waiting for its turn to move.  The muscles in our lower body are actually being “set in motion” trying to counter the forward tipping sensation we are beginning to feel, and this is where it gets complicated with our uncoordinated movement skills and neurological disorder.

As your upper body is leaning forward, your brain is beginning to tell some of the muscles in your trunk and legs to tense up in an effort to keep you from falling forward.  At the same time your brain is also telling some of your other muscles to get moving and catch up with your upper body.  However, in those of us with cerebellar problems, these signals get a little mixed up in that the timing is off.  In other words, opposing muscles may be tensing up at the same time you are trying to move - and you get stuck.  Or, the signals are delayed in getting to the muscles that are supposed to help stop your tipping, so your tipping momentum continues, which means those muscles will have to tense up even more.  About now is when your uncoordinated nervous system really kicks into high gear as your body is swaying and tipping all at the same time.  Stop…go…more stopping…now go…NO! STOP…ok, now go.  This is part of the answer to the sway we experience and also part of the reason why we get “stuck”? 

Too much motion and not enough control is the basic problem which your cerebellum can’t keep up with.  During these moments you are working hard in a reactionary frame of mind.  You have forced your neurological and muscular system to react to this emergency you have created, and part of your emergency response system has a problem and can’t keep up very well. 

The second mistake we make when initiating our movements involves our feet; and this is much more common in people with a cerebellar problem from my experience.  While standing with their body weight back on their heels, and their knees are invariably somewhat stiff, this person moves their foot out in front of them before they move the rest of their body.  In order to do this they push their foot forward, without stepping, as if they were on a frozen lake of thin ice. 

This movement causes more of their body weight to be transferred to the heel of the other foot.  At the same time, the back leg’s knee joint is becoming stiffer from tensing muscles reacting to the abnormal weight shift, and the person also begins to sense that they are leaning backwards, while trying to move forward.  Then their brain invariably sets things in motion to correct the situation and tells other muscles to get busy, “Hurry, stop us from falling” – and so it goes, just like I stated before, and back and forth we go through the swaying phase we know so well. 

Does this make a little more sense now?  Very basically, our swaying back and forth is caused from our brain, acting through our muscles, in a desperate attempt to correct some of the mistakes we have made.  In one explanation, we sway back and forth because of the “delays” in the timing of the message our muscles are receiving.  (More on this later.)  Hence, we are causing ourselves to work much harder than we should have to!

How do we avoid both of these problems?  The answer is simply that we must learn how to move our entire body as a unit!  I have found that the best way to do this is to begin your movements by moving from your belt buckle.  This simple movement technique allows you to move with “planted feet” no matter which direction you choose to go.  Thus, you will be more stable, more confident and much safer.  

Yes, start moving your body by starting your movements from your belt buckle.  The concept here is fairly simple actually.  Remember your “line of reference” from the back of your head to the heels of your feet?  Keep it as straight as you can and move your belt buckle forward.  This is important – at the exact same time that your belt buckle begins to move forward, every part of your body will move as a unit with your belt buckle, and your reference line will stay straight.  As you move forward your weight will naturally transition through your feet and your body will naturally remain centered on your feet. 

For example, when you are mid-stride in a normal walking pattern, your body should be centered between your feet.  As you continue walking forward there comes the moment when all of your body weight is on one foot and the trailing foot is about to be lifted from the floor.  If you stop at this instant and look at the reference line you would see that it is straight from the back of the lead foot’s heel to the back of the head.  Have the person take another step forward and stop.  Again, the reference line is straight, only now it is fixed to the back of the other foot’s heel.  This is what you are ultimately striving to achieve!

PUTTING ALL TOGETHER

What you are attempting to create for yourselves is a predominantly anticipatory mindset rather than relying on a faulty reactionary mindset.  Living with a reactionary mindset is frustrating because you are always trying desperately to respond to what has already happened.  The anticipatory mindset reverses that process.  It is more relaxing, more controllable, more purposeful and much more productive.  The anticipatory mindset will allow you to use your personal resources more wisely, you will move about with more confidence and you will be safer – much safer.  All of this will provide you with more independence and also open your world to more possibilities and opportunities.  And it all begins with improving your movement skills.  It all begins with remembering: 

1.      Try to hold the belief that you can learn to move better.

2.      Hold the thought, “I can do this, it is possible, I can do it!”

3.      Keep your head up and straight.

4.      Avoid looking down at the floor.  Look where you are going.

5.      Straighten up your shoulders.  No drooping or holding them up.

6.      Keep your spine straight.

7.      Don’t push your butt out.

8.      Keep the back of your head in line with your shoulders, butt
and the heels of your feet.  Maintain your line of reference.

9.      Plant your feet whenever you are standing.

10.  Make sure your feet are planted before you start to move.

11.  Begin to move from your belt buckle and move your body as a unit.

12.  Try to hold the image in your mind of what your normal posture looks

  like and how it feels to you.  Carry it with you everywhere!

                   Copyright 2007, Thomas L. Clouse, M.D.