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.
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 – just like “normal” people aye!
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 moving and walking, the how to’s and why for’s, 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 then get out of our way because we will be quite capable of filling 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 to stand or 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, 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. Hmmm…could our shoulders be inducing part of this? YEP!
This brings about the next learned behavior we have adopted. The plight of the cane and walker. Watch people using these and learn of your mistakes. The majority of these people walk stooped forward to “come down” to the walker or cane. This causes them to lean on that walker or cane and that’s a big NO NO.
A few people walk with their shoulders and heads forward. To counteract the forward weight shift, they then must stick our butts out. What does that do? It does the exact same thing in the opposite direction as sticking your head out. 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 forward at the waist 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, didn’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 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 some of you have to lean on the shower wall while you rinse your hair. You closed your eyes and lost the most important sense you have for your balance while you’ve also moved your head forward most likely. Hopefully you braced yourself before you attempted that dare devil move. Are things starting to make a little more sense to you?
The simple act of looking where you are going (i.e.; the horizon) 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. 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.
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 who doesn’t know how to properly shift their weight!
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. In this case we have our shoulders and the slope on the ground causing us to tilt further 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! Question: where did you feel your body weight on your feet just before that 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 where the true fault lies? Let’s work on the solution to help you avoid this tragedy and help you keep your head, shoulders, butt, and most importantly your feet where they are supposed to be.
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 basic reason is allowing our disease process to control us. The second reason is decreased muscle tone. We do not do enough muscle strengthening movements or exercises. 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 stopped trying to do certain things and 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! Hint: It begins in your feet.
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 knees to get their feet off the floor, shifting their weight, standing upright, flexing without thought and relaxing. 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 – flat feet all the way. 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 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 your movements. 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 for added support and stability. If you a super clumsy use a shoe with a stiffer sole like leather. A 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 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 stiffened up and back, hips stiff, knees stiff and you are 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 shoulders, knees and toes in line, and
5. Bend your hips and knees (lower yourself straight down), and
6. Relax from head to toe (that’s a tough one), and
7. Slowly shift your upper body forward and backwards until you feel all of your weight evenly distributed on your feet, then hold it there.
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. 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!
How many of you just said, “Forget it man! I can’t remember to do all that stuff each time I try to stand. Besides, I already have to much to think about.” Yes, you are correct. It is too much to think about. So let’s simplify the process and move past all that “thinking”.
First thing to know though, you need to be aware of everything I’ve mentioned above. Aware – not worried or stressed about it.
It all begins and ends on your flat feet – so make them completely flat. How? Do #1.
Make both of your feet “FEEL” the same. Feel it. Don’t let your mind try to tell you what you think you feel. FEEL IT.
Your feet are completely flat when you feel equal weight on the front, back and sides of the bottom of your feet.
Make both of your feet feel the same. Typically one foot will feel more weight on it than the other AND that is your fault.
I don’t care what excuses you want to throw out, it’s your fault.
When one foot is lighter than the other push more weight onto the lighter foot. How? Push that same knee towards your light foot. HUH? Apply a small amount of pressure to your KNEE.
Felt the difference in your feet didn’t you. Now play with it until you can say, “Piece of cake.”
Notice how you can make yourself more stable then less stable just by changing the weight on your feet.
Now that you know how to easily make yourself more stable, now that you know the FEELING, you don’t need to think about much of anything except “how do my feet feel”!
Be honest. How much more simple can I make it for you?
The big lesson learned is: If my feet are stable, flat and have equal weight on them, I’m stable and safe, and all that other stuff pretty much takes care of itself.
Tom’s first rule: Everything begins and ends of your flat feet. Everything!
MOVING AS A COORDINATED UNIT.
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, or onto the sides of our feet, and we decrease the pressure on our feet. By moving our upper body first we 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 instability 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, 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 in that direction. 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. A major reason why we have so many clumsy problems and why we get “stuck in the mud” – and much of it is our fault.
Too much motion and not enough control which your cerebellum can’t keep up with. During those 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 but 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. Why? Same reason as above. Initiating movements with your upper body.
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. Ever watch a person doing this and their knee hyper-extends (goes backwards too far)? Again, their fault.
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! But there is a rather simple correction we can learn.
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. All movements are initiated from below the belt via your feet. 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 feet. The concept here is fairly simple actually. Remember your “line of reference” of shoulders, knees and toes? Keep it as straight as you can and move with your feet. The answer is in your feet. They control your posture and movements – not your brain. As you move forward via your feet your weight will naturally transition 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 correct. Have the person take another step forward and stop. Again, the reference line is correct. 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 centered.
4. Avoid looking down at the floor. Look where you are going.
5. Straighten up your shoulders. No drooping or shrugging.
6. Keep your spine straight.
7. Don’t push your butt out.
8. Keep shoulders, knees and the toes of your feet close to lined up. 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 lower body to move 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!