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CHESAPEAKE CHAPTER of the
NATIONAL ATAXIA FOUNDATION
Web
Page: http://www.ataxia.org/chapters/Chesapeake/default.aspx
1444 Crowell Road
Vienna, VA 22182 TEL: 703-759-2008
Subjects Sought for a “Dancing with Ataxia” Research Study
Submitted by Carl J. Lauter and Marjorie Nye
For those who attended the CC-NAF Medical Meeting on 21 February
2009, you are all familiar with the “Dancing with Ataxia”
performance and discussion by retired surgeon, Dr. Tom Clouse. What
a show of remarkable stamina! For those who missed it, you missed a
show of what self-direction and determination can produce – this
selfsame speaker, diagnosed with SCA-14, was close to having to use
a walker – but is now able to walk and dance without supports.
Do Dr.
Clouse’s techniques only work for him and a few of his subjects, or
could they work for everyone? Researchers are in the process of
attempting to secure funding and set up a movement studies research
program to answer that question. Please note that this is only a
rough plan for now -- the proposed study is still in the planning
stage and not yet funded.
It would help
potential researchers to know how many people with cerebellar ataxia
would be interested in participating. They are looking for ten
“ambulatory” participants; this includes anyone using a cane or
walker. We would like to take a poll for people willing to travel
to the Baltimore, MD area for the duration of the study. The
proposed model calls for each person to attend sessions two or three
times a week for 12 weeks, however, we need to know what the
realistic availability is of those wanting to participate. So
please, if you have an interest in participating in this movement
study, please talk to us about your availability.
For example,
could you only come to Baltimore once a week? Could you only be
there on a Saturday? How many of you could be there every week on a
weekday? How many of you could be there on a weekday twice a week?
This information will dictate what we can offer and help determine
the actual costs for the study.
Dr. Clouse’s comments:
This study will help us refine an effective physical therapy program
for the ataxic individual. Through this study, we will be able to
begin the process that will demonstrate to the medical community how
to help us help ourselves.
My techniques are designed to help ataxic individuals identify and
avoid some problems with their walking ability. We hope that this
tailored approach will prove more effective than other physical
therapy programs currently used by people with ataxia. Imagine a
future where the ataxic patient could hear their doctor say, “There
is something we can do for you.” This is a study to begin that
process – and we need your help.
How much each participant’s movement skills will improve from their
involvement in this study will be variable, and dependent, upon
their starting condition, individual issues and how much effort and
commitment you bring with you. This is your time to step forward
and do something for you, try something novel (even though it’s
really not) and begin to show yourself how you still have an ability
to improve your abilities. Frustration, hard work, some crying and
a bunch of smiles await you.
Do you see a down side to any of this? If you do, look inside
yourself and ask yourself, “Why? What’s holding me back?” Could it
be that “label” I often refer to? Imagine the possibilities.
Challenge yourself!
If you want to be involved, please send us some information about
yourself and your availability to participate. Please notify either
Glenn or Carolyn Davis at davisgulch@aol.com, Dr. Sarah Ying at
sying@dizzy.med.jhu.edu, or Dr. Tom Clouse at tom@walkingwithataxia.com.
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