Hostname: page-component-cd9895bd7-7cvxr Total loading time: 0 Render date: 2024-12-23T17:47:39.141Z Has data issue: false hasContentIssue false
  • English
  • Français

Helping Adults with Muscular Dystrophy: Rehabilitation Counseling Implications

Published online by Cambridge University Press:  27 August 2015

Roy K. Chen
Roy K. Chen*
Affiliation:
Michigan State University
*
Office of Rehabilitation & Disability Studies, Michigan State University, 237 Erickson Hall, East Lansing, MI, 48824-1034, USA. Email: [email protected]
Get access

Abstract

It is estimated about 200,000 Americans have been diagnosed with Muscular Dystrophy (MD), a neuromuscular disease characterized by gradual degeneration and atrophy of the muscle cells and fibers (Siegel, 1999). Functional limitations associated with MD include cognitive, social, physical/vocational, and emotional functioning. Rehabilitation counselors are advised to use a holistic approach to serving clients with MD. Compassion is key to building a meaningful professional relationship between the client and the rehabilitation counselor. However, rehabilitation counselors should neither communicate an overly pessimistic outlook nor raise false hope.

Type
Articles
Information
The Australian Journal of Rehabilitation Counselling , Volume 7 , Issue 1 , 2001 , pp. 52 - 64
Copyright
Copyright © Cambridge University Press 2001

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Ahlstrom, G., & Sjoden, P-O. (1996). Coping with illness-related problems and quality of life in adult individuals with muscular dystrophy. Journal of Psychosomatic Research, 41, 365–376.CrossRefGoogle ScholarPubMed
Bach, C.A. (1992). Traveling with technology. Rehabilitation Nursing, 17, 141–143.CrossRefGoogle ScholarPubMed
Bartalos, M. K. (1990). Muscular dystrophy: Assessing the impact of a diseased state. Loss, Grief & Cure, 4, 63–73.Google Scholar
Baldwin, M. K. (1999). Relational schemas: Research into social-cognitive aspect of interpersonal experience. In Cervone, D., & Shoda, Y. (Eds.), The coherence of personality: Social-cognitive bases of consistency, variability, and organization (pp. 127–154). New York: The Guilford Press.Google Scholar
Baldwin, M. K., & Keelan, J. P. (1999). Interpersonal expectations as a function of self-esteem and sex. Journal of Social & Personal Relationships, 16, 822–833.CrossRefGoogle Scholar
Boyle, P. S. (1994). Rehabilitation counselors as providers: The issue of sexuality. Journal of Applied Rehabilitation Counseling, 25, 6–9.CrossRefGoogle Scholar
Bradley, W.G. (1987). Amyotrophic lateral sclerosis and Duchenne muscular dystrophy: The diseases and the doctor-patient relationship. In Charash, L.I., Lovelace, R.E., Wolf, S.G., Kutscher, A.H., Roye, D.P., & Leach, C.E (Eds.), Realities in coping with progressive muscular diseases (pp. 3–20). Philadelphia: The Charles Press, Publishers, Inc.Google Scholar
Brodwin, M.G., & Chen, R.K. (2000). Marital and sexuality issues in clients with disabilities. In Vandecreek, L., & Jackson, T. L. (Eds.), Innovations in clinical practice: A source book (vol. 18, pp. 459–470). Sarasota, FL: Professional Resource Press.Google Scholar
Eeg-Olofsson, K.E. (1999). Congenital muscular dystrophy: Care of children and families. Scandinavian Journal of Rehabilitation Medicine Supplemental, 39, 53–57.Google ScholarPubMed
Emery, A.E.H. (1994). Muscular dystrophy: The facts. Oxford: Oxford Medical Publication.Google Scholar
Fowler, W.M., Abresch, R.T., Koch, T.R., Brewer, M.L., Bowden, R.K., & Wanlass, R.L. (1997). Employment profiles in neuromuscular diseases. American Journal of Physical Medicine and Rehabilitation Supplemental, 76, S26–S37.CrossRefGoogle ScholarPubMed
Gustavson, K-H. (1999). Muscular dystrophy: Genetic counseling and family planning. Scandinavian Journal of Rehabilitation Medicine Supplemental, 39, 38–41.Google ScholarPubMed
Heller, K.W., Dangel, H., & Sweatman, L. (1995). Systematic selection of adaptations for students with muscular dystrophy. Journal of Developmental and Physical Disabilities, 7, 253–265.CrossRefGoogle Scholar
Heller, B.W., Flohr, L.M., & Zegans, L.S. (1989). Psychosocial interventions with physically disabled persons. New Brunswick, NJ: Rutgers University Press.Google Scholar
Hicks, J.E. (1998). Role of rehabilitation in the management of myopathies. Current Opinion in Rheumatology, 10, 548–555.CrossRefGoogle ScholarPubMed
Jamero, P.M., & Dundore, D.E. (1982). Three common neuromuscular diseases: Considerations for vocational rehabilitation counselors. Journal of Rehabilitation, 48, 43–48.Google ScholarPubMed
Johnson, E.R., Abresch, R.T., Carter, G.T., Kilmer, D.D., Fowler, W.M., Sigford, B.J., & Wanlass, R.L. (1995). Profiles of neuromuscular diseases: Myotonic dystrophy. American Journal of Physical Medicine & Rehabilitation Supplemental, 74, S104–S116.Google ScholarPubMed
Kilmer, D.D., Abresch, R.T., McCrory, M.A., Carter, G.T., Fowler, W.M., Johnson, E.R., & McDonald, C.M. (1995). Profiles of neuromuscular diseases: Facioscapulohumeral muscular dystrophy. American Journal of Physical Medicine & Rehabilitation Supplemental, 74, S131–S139.CrossRefGoogle ScholarPubMed
Mackelprang, R.W., & Salsgiver, R.O. (1999). Disability: A diversity model approach in human service practice. Pacific Grove, CA: Brooks/Cole Publishing Company.Google Scholar
McDonald, C.M., Abresch, R.T., Carter, G.T., Fowler, W.M., Johnson, E.R., Kilmer, D.D., & Sigford, B.J. (1995a). Profiles of neuromuscular diseases: Duchenne muscular dystrophy. American Journal of Physical Medicine & Rehabilitation Supplemental, 74, S70–S92.CrossRefGoogle ScholarPubMed
McDonald, C.M., Abresch, R.T., Carter, G.T., Fowler, W.M., Johnson, E.R. & Kilmer, D.D. (1995b). Profiles of neuromuscular diseases: Becker's muscular dystrophy. American Journal of Physical Medicine & Rehabilitation Supplemental, 74, S93–S103.CrossRefGoogle ScholarPubMed
McDonald, C.M., Johnson, E.R., Abresch, R.T., Carter, G.T., Fowler, W.M., & Kilmer, D.D. (1995). Profiles of neuromuscular diseases: Limb-girdle syndromes. American Journal of Physical Medicine & Rehabilitation Supplemental, 74, S117–S130.CrossRefGoogle ScholarPubMed
McNeil, J. (1998). Disability. (U.S. Bureau of the Census, Current Population Reports, Series P23–194). Population Profile of the United States: 1997, 32–33. Washington, DC: U.S. Government Printing Office.Google Scholar
Miura, M., Okuno, E., Seto, M., Tomita, T., & Agari, I. (1999). Psychological process of parents of children with progressive muscular dystrophy and factors influencing their acceptance of children's disease and/or death. Japanese Journal of Counseling Science, 32, 43–54.Google Scholar
Ogasawara, A. (1989). Downward shift in IQ in persons with Duchenne muscular dystrophy compared to those with spinal muscular atrophy. American Journal of Mental Retardation, 93, 544–547.Google ScholarPubMed
Sadjadpour, K., Levine, M.J., & Friedrich, D.D. (1987). A psychobiological view of the development of children with Duchenne muscular dystrophy. In Charash, L.I., Lovelace, R.E., Wolf, S.G., Kutscher, A.H., Roye, D.P., & Leach, C.F. (Eds.), Realities in coping with progressive muscular diseases (pp. 105–116). Philadelphia: The Charles Press, Publishers, Inc.Google Scholar
Siegel, I.M. (1999). Muscular dystrophy in children: A guide for families. NY: Demos Medical Publishing, Inc.Google Scholar
Sirotkin-Roses, M. (1991). Psychosocial issues and case management in myotonic muscular dystrophy. Loss, Grief & Care, 4, 43–61.Google Scholar
Vash, C.L. (1981). The psychology of disability. NY: Springer Publishing Company, Inc.Google Scholar
Ville, I., Ravaud, J-F., Marchal, F., & Paicheler, H., & Fardeau, M. (1992). Social identity and the international classification of handicaps: An evaluation of the consequences of facioscapulohumeral muscular dystrophy. Disability and Rehabilitation, 14, 168–175.CrossRefGoogle ScholarPubMed
Wevers, C.W.J., Brouwer, O.F., Padberg, G.W., & Nijboer, I.D. (1993). Job perspectives in facioscapulohumeral muscular dystrophy. Disability and Rehabilitation, 15, 24–28.CrossRefGoogle ScholarPubMed