Emotional aspects of a specialized physical fitness program for a person with CMT

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(From the Former CMT International)

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 Rugo

and Dorian s with PLEP at Ohio State University, for as my trainer;

for Dorian who chose trainers to challenge me!