FROM A PERSONAL AND PROFESSIONAL PERSPECTIVE
TODAY?
             Thomas L. Clouse, M.D.

                                      
                          WALKING WITH ATAXIA   

TOMORROW!
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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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     "I  am just so thrilled Tom, I have used the rowing machine 3 times, in fact every time I go to the gym I use it.  I have got so much stronger.  I have to get a balance up and down (just a hand), but maybe one day ... who knows.  For the first time I can see me getting out of this B!!@@##!! wheelchair!"

                                                                                                                                                    Nickie Bland

 

       "I can't thank you enough for taking your valuable time to visit our group's annual picnic last week.  We learned so much in such a short time it was unbelievable! We were so fortunate to have someone of your stature attend our group meeting!  You made all the difference.
 
I have had excellent feedback from the group and looking forward to working with you again.  You are a truly amazing person and I admire your strength, courage and willingness to share your "magic" with other Ataxians."
                                                                                                                                                  Crystal Frohna

 

            "I just want top thank you for the wonderful presentation you did for us in Orlando yesterday.  For me it was a real eye-opener.  For the first time I now believe there is some hope in living a more normal life.  I am certainly going to do everything I can to improve myself.  If you can do it, its certainly
worth my effort to try.  You were a great inspiration !" 
                                                                                               Gene "Eugene bend your knees" Meyer


            "Firstly thanks you have given me the most positive outlook I have had for years. Even when I see my Neurologist (yearly) she just looks at me and does the finger to nose test and asks me a few tongue twister words and says "as their is no cure see you again in about 12 months" because I exercise religiously each morning I have been able to slow the progression of this disease and have maintained my mobility. Having met a lot of like sufferers I know how lucky I am. My Neuro is impressed each time I see her and just says keep up the good work but says tells me "no cure will be found in yours or my lifetime !"
                                                                                                                                                     John Harnett
 

            "I have (like all of us) had many many severe falls, and often hit my head on a door jam, necessitating me to be super glued or stapled.  Now I am in an electric wheelchair and stupidly I listened to the OT who told me I had to stay in it.  Naturally I got weaker, and fatter!  The hospital told me that if I didn't do what I was told I would no longer be able to live independently.  My Neurologist told me to listen to my mother...(who is) of the attitude that I shouldn't do anything, and quite frankly (it) drives me mad.
 
            As I got so weak, and in an endeavor to loose weight, I have joined a gym and have a personal trainer once a week.  I'd rather spend my money on this than some pills that don't really help!  I am amazed at how much stronger I have got after three months, but I am still too scared to walk without holding onto something.   I'm afraid of falling and hitting my head and not being able to live on my own anymore.  I know you say the confidence comes from within, maybe I'm trying to rush things, a tendency I have.  It is a great shame I am so far away, one day I will get to meet you in America, it is too good a goal to give up.  Wouldn't it be great when I walk in!"
                                                                                                                                                      Nickie Bland

 

"I felt so encouraged when you said that Ataxia affects self esteem…that was the first time I heard that or thought about that…I am a person who believes in the power of positive thinking and how your attitude affects your own personal journey/take on life…but I didn’t realize that the progression of Ataxia really shakes one’s confidence, self esteem, and just the center core of your being.  Thank you so much for these very encouraging words and I am so grateful that there is a professional out there who really shares our daily experiences and struggles in a very personal way.” 

                                                                                                                                                        Theresa Gonzales
                                                                                                                                                           

           “Your approach strikes a chord.  I am currently working with a physical therapist on strengthening and balance via land and pool exercises as well as chi kung standing exercises, but nothing as focused and precise and comprehensive as what you seem to be laying out in your tips.  She constantly reminds me though to slow down and walk correctly rather than fast and sloppy which reinforces all the wrong behaviors and postures.  I don't always do that though.”
 
                                                                                                                                                       Jeff Rubin
                                                                                   

“I read your article in the Spring 2007 issue of Generations titled Dancing with Ataxia.   It was as if you were talking to me.  I am interested in starting my own journey back to "normalcy" and realize that the key is me but I have been frustrated with the lack of finding that process to help me achieve success.  Specifically, I was intrigued by your thoughts that it took consistent work, lessons, and exercises for you to achieve  the progress you've made.  I would like to tap into that process because what I have been doing does not bring the results I've expected.  Can you help?” 

                                                                  Rick Haag


            "Throughout 2006 and part of 2007 I have participated in speech and physical therapy, gait training & balance as well as fall prevention classes at Hoag as recommended & prescribed by both doctors. I also take yoga once a week and continue to get around on my own with the use of a walker but would like to try not to depend on it as much.  

            Even with all of the medical and therapy support I find myself in an overall funk and at that, "I can't do that stage".  I have taken a few tough falls never breaking anything but not bouncing well at all.  Lucky for me I now belong to an ataxia support group in Orange County, CA and it is comforting to share stories with people who have similar circumstances.  Some of our members attended the conference you spoke at in Memphis and say great things about you.  I had been told, I can only slow down the deterioration of the brain, I can't cure it.  What ever you can do to help me jump start my journey to affect change would be greatly appreciated." 
                                                                                                                                                     Jon Carter
 

            "Your article in the Spring 2007 Generation gave me some hope.  I have ataxia and have been fairly okay with it until the last year.  I am getting worse (I fall alot and walk with so much effort) and was thinking that I can't go on like this.  Your article has given me some hope.  I was thinking there must be a way to improve & you proved it.  I will give every effort to "get better".  Thank you for your inspiration." 

                                                                                                                                                     Louise Ikeda

                           Send your thoughts and comments to  tom@walkingwithataxia.com