Information on ataxia from Dr. Tom Clouse

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Walking With Ataxia


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Walking With Ataxia
Cerebellar Degeneration


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Basic Overview
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The nitty gritty (text)
Why do I have to work
so damn hard?

You are your enemy.
Believe you can.
Let's begin.
To move, to walk.
Stepping out.
Not shuffling.
It's not just walking.
Remember when.
The dance.

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Disorder info
detailed information for
Ataxia defined
Spinocerebellar Atrophy
Spinocerebellar Atrophy (2)
Identified Genetic

& Biochemical Defects
Multiple System Atrophy
Friedreich's Ataxia
Parkinson's Disease

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Let’s begin to undo the effects our disorder has had on our bodies, both the physical effects and the emotional effects. This will be a process which will take a great deal of time and effort on your part; and you are going to need some help. What I will share with you on this website is valuable basic information which will prove very beneficial for all of you. All of this information pertains to the simple techniques and methods we once knew and took for granted. You won’t find anything here that isn’t common sense and common knowledge. This information is used by the youngest walking child to the oldest adult every day of their lives. Further, it really doesn’t matter much what your SCA number is, and it doesn’t matter that you may have some other kind of problem, it is all the same when it comes to the basics we all must use and apply. The only difference is our starting point and the peculiar problems each of us must work with.

Before your problem began you used this basic information quite successfully without realizing what you were actually doing. You just did it, walked, ran and danced, but almost never thought about how you made it all happen. One foot went in front of the other without any effort or thought process. Things were easy back then. However, now your playing field has changed and it is those simple little things which you find so challenging – you forgot them. So back we go once again. I’m going to ask you to re-learn and start over again with the basics, but this time you are also going to learn why you are doing it.

What I will share with you on this website will provide you with hope and a positive change to your life’s situation – if you chose to learn and apply what I am offering. I can give you this unconditional promise because it is what saved me. These are the simple things I also had to re-learn and re-apply. It has taken 3 ½ years to get me to where I have the ability to dance today, and I have to keep working to maintain it; just like all of you will also have to do. While I can’t guarantee how much of your normal each of you will get back, I can tell say that each of you shall benefit from your labors. Please trust yourself, fight through the frustrations and set backs, and don’t give up. You have so much to gain.

For those of you now using a cane, imagine yourself not needing it anymore. Imagine pushing your envelope and learning to dance – yes – I said dance. Imagine not having to look down at the ground when you walk. Imagine not having to think about how you are going to shuffle through the crowded store or restaurant. Imagine not being ashamed to get up from the table in that restaurant and walk to the bathroom without feeling embarrassed. Imagine it and visualize it for it is possible. I know. It happened to me. It can also happen for you. How bad do you want it is the key ingredient to getting started.

Earlier I said that you will need some help to reach your goal. I was fortunate to have found a wonderful support system and a fun outlet to accomplish my dramatic change. I had to think outside of my box and trust what these people were telling me. When I started I was basically just like you. I could easily see all the things I could no longer do and dwelled too much on what I could never think of doing again. I too was a victim of the medical professions dogma. Heck, I used to believe and preach it myself because I didn’t know any better. For example, at least yearly I visit with my neurologist and know the routine by memory. At the end of the exam I was also told that things were pretty much the same as last time with some mild to moderate degenerative changes in…yep…just like you. Then there was the customary…no therapy, no cure, “you’ll just have to find a way to cope with it the best that you can.” The depressing truth is always painful even though we already know it.

While the depressing truth is bitter, it doesn’t all have to be that way, and that is the essence of what I have found for myself and now will share with you. There is hope for us. And there is some therapy which will help us and it is so “simple”. Again I tell you, everything I will offer to you I have had to do for myself, and it was painfully frustrating much of the time. And honestly, without the close family of very supportive friends pushing me with encouragement when I thought I had reached my limit, I don’t think I would have kept up with it. It took their tough love so many times to pull me out of my own muck. It took their stamina, which mirrored mine, to help push me through some of the psychological part of our disorder. And that is the exact type of help each of you will also require to make this a reality for yourself.

The first step I will ask you to take is within your mind because it all starts up there. You will find that your mind will be your biggest enemy, as well as your biggest asset. Your mind is where you must start the process in your efforts to use what I am about to share with you. You have to want to get better and want to do the required work. And you will have to believe there is hope. You will also have to believe that you can make a difference for yourself. That means you will have to change your perspective of yourself. This part is just as difficult as the physical problems we deal with and sometimes more so. I pray that each of you will find the outlet of support you will need to help you apply this material and help pull you through those doubting and frustrating times which you will encounter. Please begin with the belief that this information and these techniques will help you move and walk better. Your only requirement is to learn and apply them to yourself. Please understand that you are capable of doing more than you think you can at this point. You just don’t know how to get there yet.