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Emotional aspects of a specialized physical fitness program
for a person with Charcot-Marie-Tooth disease
by Marilyn Hartline, LISW, CAC, Family Therapist, Willson Family and
Child Guidance Clinic, Columbus, Ohio (1987)
Persons with a physical disability may have various emotional concerns
and stereotypes that will prevent them from maximizing their full physical
potential. Those emotional concerns can encompass body image, lack of
medical knowledge about remaining body functions, a chronic sense of futility
and depression, negativistic outlook on improvement of body functioning,
and a denial system about body limits. Therefore, it is the goal of this
article to examine how a specialized physical fitness program can not
only improve the physiological functioning of a disabled person, but can
also add immeasurable benefits to the development of a healthy self-concept.
I have had Charcot-Marie-Tooth (CMT) disease since birth and had a goal
of finding an exercise program to enhance my physiological functioning.
For the past two years I have participated in an exercise program for
the physically disabled at Ohio State University twice a week. Professionally,
I am a family therapist focusing on how chronic diseases affect a family
system, as well as a coordinator of a support group for persons with CMT
disease. For a long time I have been interested in how CMT and other physical
disabilities impact emotional health and quality of life.
Body Image
Frequently I viewed my body as worthless; as a glob of bones with some
muscles. Through the development of a specialized physical fitness program,
I became aware of notable physical improvement (i.e. smoother gait and
increased muscle strength). Also the trainer's encouragement, enthusiasm,
and consistency was significant in giving me the message that my body
was to be treasured and valued. This change for persons with a physical
disability also may develop slowly due to cultural messages surrounding
the perfect body image, and due to the gender of the trainer. If the trainer
and the participant are of opposite sex, the trainer will need to be sensitive
to possible resistance from the participant. This may be a result of the
participant's own negative experiences with rejection from the opposite
sex, and/or from the socialization process of needing the perfect body
to be a person of value in American society.
Body functioning and chronic sense of futility
Regarding rarer physical diseases, the medical field often does not have
available prescribed treatment. Therefore, the person with a rare disability
is left to ferret out how best to maintain current body functioning. This
process can be draining emotionally, futile, and expensive; not to mention
it being counterproductive and physically harmful. Trainers have the philosophy
of "no pain, no gain." In my situation the pain meant irreparable
muscle damage a fact not known to physical therapists or to occupational
therapists unless they have thoroughly researched the disability their
patient brings to them.
In the development of my physical fitness program, my trainer was unfamiliar
with the disease and sought out physicians and surgeons who were intimately
acquainted with the disability. For me who was and is still aware of the
significant loss of body functioning, this research initiated by the trainer
engendered additional emotional trust and security (which is innately
present in normal body functioning). Additionally I felt very much an
equal as my trainer shared his working knowledge of the musculature and
the rationale for the exercises. Lastly, I felt with the additional understanding
and research exhibited by my trainer, my personal physical fitness goals
could be maximized. The knowledge gave me a sense of freedom knowing I
did not need to be locked into my current body functioning. I also feel
less a victim of my disease.
Outlook on improvement of body functioning combined with denial about
body limits
As my trainer would question me about the physical wherewithal to do exercises
(i.e. lift dumbbells, execute full range of motion, and hand exercises),
I would give excuses why it could not and should not be done. Through
the persistence and the gentle challenge of the trainer, I discovered
more freedom and control over the disability. I had also used my perceived
limits to shield me from taking proactive steps to prevent further hand
deterioration. Because of the trainer's insistence to explore realistically
the limits of my CMT, I sought additional medical advice which is enabling
me to avoid further surgical procedures (designed to maintain current
level of hand functioning).
Summary
With the added sense of body freedom, improved body image and functioning,
the sense of control over more deterioration, and the additional medical
knowledge about the functioning level of my body, I have noted an increase
in both physical and mental energy for life and a marked decrease in a
chronic sense of depression. Finally, although this article has been written
from my personal experience, it has also been my observation both personally
and professionally that few persons explore the benefits that a physical
fitness program can add to their emotional sense of well-being.
I would like to thank the following persons for their contributions to
this paper: Judy Siehl, family therapist and colleague at Willson Family
and Child Guidance Clinic, for her suggestion and validation of this paper
and Eric Rugo and Dorian Richards with PLEP at Ohio State University,
for Eric as my trainer; for Dorian who chose trainers to challenge me!
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