Throughout this process of re-learning how to walk and move I found some obvious problems I had to change. My movements had become anything but normal, and you are doing the same thing. Gradually we have modified our movements to accommodate our changing neurological condition. In short, we just gave in to the changes without realizing the mistake. Furthermore, everyone who should have known better – did not. We allowed ourselves to deteriorate because we thought we had no choice. In fact, we have been told many times,”You don’t have a choice. You are ataxic because of your disorder.”
Well… I’m here to tell you quite simply that is NOT true! The people who have told you that believe it to be true but I can show you that it is not. But before I show you how to disapprove that silly notion let’s move on to a couple of basic concepts you are going to need to help you gain some renewed control over your condition.
MUSCLE STRENGTHENING: You are in a weakened physical state. In order to re-learn how to properly move again you will have to begin a regimented exercise program which includes your total body. It will not be good enough to just work on your legs. You need all of you to do it right. The stronger you become, the better you will move – guaranteed.
Here is the first physical dilemma which you will face. You will try some of this and tire easily. As you tire, you will become more clumsy, maybe fall, and ultimately feel worse. Then you will complain about what you can’t do, blame the damn neurological condition for your fate, slump into a chair and say you can’t; it won’t let me. Then, since you know that it takes you awhile to get your strength and limited coordination back, you sit even longer. Then, since you really don’t want to go through it all of the frustration and added clumsiness again, so you stop trying. You’ve found it’s easier to sit in your chair with a remote in your hand.
About now it happens again; the darkness creeps in and those ever present depressive thoughts become stronger in your head. I tried and I can’t. No matter how hard I try I just can’t. STOP it! You haven’t given yourself a fair shot at trying. Why? You are asking your muscles to do things they are not in condition to do for you. You have allowed them to weaken too much and you’ve been using them incorrectly. Give them some time to rebuild while you keep at the exercise routines about three times a week. You will have to fight yourself as you go through this part and just do it. Within a short time you will begin to see a positive change in every thing you try to do. Be patient and believe in yourself. You can do it. It is all up to you. How bad do you want it?
Remember when you were normal and active? Remember how every once in awhile you would do something which caused you to hurt and you complained that you were “out of shape”? Nothing has changed. The only thing which is different now is that we have a neurological disorder and it has become the thing we blame almost everything for. You need to stop doing that so you can move forward with your life. Stop using it as a crutch for being out of shape. A simple fact is that our condition, Spinocerebellar Atrophy (SCA), does not cause muscle wasting like some lower motor neuron disorders can. Our muscle wasting is mainly due to lack of use. Now let us take it a step further and add that a good degree of our clumsiness is due to our “muscle wasting”. And who do you suppose is responsible for that. Yep, you and me! I know many of my colleagues, and some of you as well, will challenge me on this statement, but it is true. I’ve proven it to myself. This same thing holds true for many other disorders as well.
Here is the transition I went through. I had strengthened my legs by doing a great deal of walking and riding my trike. Then I started taking dancing lessons when I had regained enough strength and stability in my legs. As the dance lessons continued and became more demanding, I found that I had to strengthen my legs even more to improve my balance if I wanted to learn more dance movements. But a little bit of strengthening wasn’t enough to allow me to turn, pivot and transfer my weight properly. I needed the increased strength of my entire body to better control my movements so I could dance and walk even better. And in doing all that I also began living again. I hope that you start to get the picture of the pattern. The muscle strengthening and the movement activities we become involved in are both therapy for us and are both required for us to learn how to move again. Walking is a very complex pattern of movements even though the basics are pretty simple.
My movement activity in the beginning was dance. Does it have to be dance? Nope. Make it whatever you want but it must include:
Purposeful movement patterns and posture to force you to learn it correctly. In other words, you have to hold your body like “this”, or you have to move to “this” spot, in “this” pattern, or you need to hold “this” pose.
It must be fun for you. You need a great reason to keep doing it. You need a great reason to put up with all the frustration which you will encounter.
There needs to be a good support system of people who will continually encourage you and treat you as “just another person”.
Push yourself to get over that initial hump.
BALLROOM DANCING: This has proved to be the ultimate tool for me to regain my balance and coordination and I had never “danced” until the summer of 2005. (Remember, I was diagnosed with SCA in 1997 and was advised to start using a walker in 2003.) Further, I didn’t go to that dance studio to learn to dance. I was only hoping that a dance instructor could help me where other professions had failed. Here was my rationale and it proved to be accurate. Who uses their body for purposeful movement more than a dancer? The skilled dancer must know how to use and control their body to move elegantly on the dance floor. It is their profession and life passion.
Some of you will argue that Physical Therapists know the same thing, and I will argue with you that they don’t. Yes, the Physical Therapist must know a great deal about how the body works and moves, and they are a valuable resource. However, their expertise is on an entirely different level. For example, they can tell you the mechanics and kinetics of the act of walking, but ask if they can dance. Most of them will likely tell you, “No, I have two left feet.” Hence, they have some of the same problems as we have learning to dance. You need someone who really understands the basics of movement skills and has the ability to instruct you in all aspects of movement. Hence, enter the experienced dancer. Think outside of the conventional box and trust me on this one.
Ballroom dancing has two things going for it which are very important for us. One, the dance steps are uniform and structured. You have to learn how to place your foot, leg, hands, arms and body where they are supposed to go, where you want them to go, and not accept where they may end up without any effort on your part. The other important point is that ballroom dancing involves two people moving in unison, and this has become very, very difficult for us as we have progressed with our disorder. It is these two factors which will be a vital part of your therapy; and learning them will create some fun for you as well as you begin to let go and “dance”.
And here is a gold lining to these two important factors. While you are learning all of these difficult and frustrating things there will be pleasant music filling your senses. You will quickly find that the music will help you relax and forget about most everything that is bothering you. You won’t be able to help it. You have to listen to the music with a receptive mind to learn and dance the dance. You will then want to dance the dance; it becomes enjoyable and you will quickly want to repeat it often. You will also be re-establishing your social life on a level you may have never experienced before and just love what it means to you. Can you think of any other activity that will teach you everything you need to help you walk better, is fun, allows you to escape into another world of pleasure, and provides you with the best social skills you could ever imagine? Me neither!
MOVEMENT: This one word sums up the basic ingredient you require to begin to rediscover yourself. Nothing else you do will ever be as powerful for you. Nothing else will do so much for you and have the ability to re-open your selection of life’s choices. You’ve lost some of your ability to walk and move with ease, therefore, you know very well how important the simple act of moving normally is for anyone. You and I don’t take it for granted anymore. I know how you have to think before you move and as you are moving. I know how you shy away from restaurants with those obstacles of people, chairs and tables. And if you find yourself in one of those places there comes a time when you realize, “I need the restroom. How am I ever going to get there from here.” You have to pre-plan your route and wait for the path to clear don’t you? I had to do that also. But not anymore! Now I don’t have to think about crowded spaces because I’ve been re-learned how to move properly. And so can many of you – if you want it bad enough!
Imagine not having to look at the ground as you try to walk. Imagine not having to shy away from congested places. Imagine not being afraid to walk close to other people in crowds, through the mall, an amusement park, a restaurant or while simply strolling down a garden path while trying to look at the beauty around you. Imagine doing that and not having to think about stumbling, falling or being embarrassed. I have transitioned back to that frame of mind and it is so liberating. There is life after our diagnosis and there is some “real” therapy for us – I found it! And you will also find the same thing by re-learning proper movement skills. Just the simple act of re-learning how to move properly will provide you with a gift on a magnitude you cannot yet comprehend. Movement skills will set you free. I guarantee it!
EXERCISE CLASSES – SPORTS – WORKOUT VIDEOS: Try any of them, try all of them, I don’t care and it doesn’t matter much which of them you want to do. The overall most important, the very most important thing, is that you do something! You have to get out there and push the envelope. And if you are one of the chronic doubters of the “I can’t do that sort of thing” type of person, the best thing I can tell you is simply, “Get over yourself and give it a chance!”
I must admit that I still have to talk to myself sometimes when I think about trying something new; but not near as often as I did before. Here’s an example. I was on a mini vacation of sorts and found myself quite bored one afternoon so I ventured over to the establishments “exercise/game room”. There were two rooms, one filled with tables for playing cards and a ping pong table (sorta tough to do those alone). The other room was a racquetball court. There was a box on the floor beside me containing racquets and balls…”I wish I had the ability to do that”… sigh…
What the hell! I’m here alone, no one can see me, so I took racquet and ball in hand and gave it a try (the first time ever) – and it wasn’t pretty, but I stuck with it for a good hour and a half – all by myself. And you know, I got better; just a little bit better than when I had started – and I began to enjoy it. Did K kiss the floor and the walls a few times? Yep… but that got a little better too.
Over the course of the next week I repeated the same thing four more times. Each time there was something I really had to think about and work through. Yep, I still ran into the wall a few times. Yep, I still met the floor a couple of times. BUT, each time, each and every time, I got a little bit better. The super thing about this is that it greatly helps me work on some movement skills which I often overlook or don’t use much in my everyday life; just like there are things with dancing that are somewhat unique to that activity.
The TAKE HOME MESSAGE is simply this. Do whatever movement activities you want for any of them will help you. BUT do them on a regular basis. AND when you start something new make sure you give it a fair chance before you turn your back to it. Take your time and fight through the “start up frustrations”. Stick with it for an honest trial period, four to five times and at least a half hour each time if you can, and you will surprise yourself at what you can still learn to do. If you don’t try you’ll never have the ability. If you don’t try you will never now what you can’t do.
And one more thing, take a look around at the people who are “doing something” which you think takes some special ability. Is it really so special or have they simply gotten off their butts, thrown away the crap and doubts in their heads and put forth the honest effort to accomplish something?