Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 (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! 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