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SPRING 2000 CP INFORMATION PROJECT BULLETIN
GROWING OLDER WITH CEREBRAL PALSY -
WHAT TO EXPECT; WHAT TO DO
Aging-a natural concept, really. We get older. We notice changes in our bodies, beginning with decrease in energy and mobility. Our joints and muscles hurt. We may develop osteoporosis. The arthritis sets in. And we may even experience bowel and bladder problems. All of this results in the loss of independence and many times the onset of depression. But we tell ourselves that aging is a natural process. After all, that's how a sixty- or seventy-year-old body feels, right? The problem for people aging with cerebral palsy is that they're not in their sixties or seventies when these worrisome problems begin to happen. They are in their thirties and forties. Some of them even experience symptoms of premature aging beginning in their late twenties. The following are some of the documented physical, social, and psychological stresses experienced by individuals with cerebral palsy as they age:
- Increasing joint and muscle pain
- Declining mobility due to bone and muscle mass losses
- Excessive wear and tear on joints resulting in early arthritis
- Changes in gait and shift in weight-bearing
- Increased respiratory problems causing heart and lung complications
- Bowel and bladder problems
- Pressure sores and skin breakdown
- Poor dental care in early years and poorly fitting dentures
- Side effects from long term use of medications
- Depression, especially related to the accelerated loss of independence
Research has been started, and much more must be undertaken, to understand the underlying causes of this "earlier aging", so that adults with cerebral palsy can continue their full, active lives well into their later years. On the flip side of this bulletin are resources that are available to help with successful aging.
BIBLIOGRAPHY
Bergman, J.S. (1994) "Protecting the Mobility of the Aging Person with Cerebral Palsy or Spina Bifida" In
Lollar D. (ed) Preventing Secondary Conditions Associated with Spina Bifida or Cerebral Palsy: Proceedings and Recommendations of a Symposium. USA: Spina Bifida Association of America, pp. 54-64.
United Cerebral Palsy (1996) Aging and Cerebral Palsy.
Resources for Successful Aging The following resource materials are excerpted from Resource List: Wellness, Self-Care, Exercise and Aging with Disability, Edition III- 6/96 compiled by June Issacson Kailes, Disability Policy Consultant for the Research and Training Center on Aging with a Disability, Rancho Los Amigos Medical Center, 601 E. Imperial Highway, Downey, CA 90242. A more extensive list of resources can be found by visiting:
www.usc.edu/dept/gero/RRTConAging
REPORT: "I'M WORRIED ABOUT THE FUTURE" THE AGING OF ADULTS WITH CEREBRAL PALSY, by Overeynder, J.C., Turk, M.A., Dalton, A., and Janicki, M., 16 pages. June 1992. CONTENT: This report describes the findings of a workgroup on cerebral palsy and aging. The report covers medical and physical aspects of aging and health care, defines cerebral palsy and reviews the various manifestations of the condition, as well as its incidence and prevalence. It points to a trend that older people with cp may have earlier age-specific related conditions than their age peers without cp. The report details the epidemiological, medical, health, social and functional issues that need further research. FOR MORE INFORMATION, CONTACT: New York State Developmental Disabilities Planning Council, 155 Washington Avenue, Albany, New York 12210.
ARTICLE: COMPLEMENTARY SELF-CARE STRATEGIES FOR HEALTHY AGING, IN SELF-CARE AND OLDER ADULTS MAGAZINE by Barrett, S., pp. 49-52, Fall 1993. CONTENT: Focuses on complementary or alternative self-care both in terms of collaboration with the primary care physician and individual exploration of self-care practices. Details the definition of self-care and describes it as a growing movement.
BOOK: PREVENTING SECONDARY CONDITIONS ASSOCIATED WITH SPINA BIFIDA OR CEREBRAL PALSY: PROCEEDINGS AND RECOMMENDAITONS OF A SYMPOSIUM, Lollar, D., 144 pages, 1994. CONTENT: The proceedings identify conditions likely to occur over time in people who have spina bifida or cerebral palsy. The book summarizes major preventive interventions possible for people with these disabilities and provides evidence that these prospective activities are helpful. The recommendations were written for people with spina bifida or cerebral palsy, as well as parents and providers. FOR MORE INFORMATION, CONTACT: Spina Bifida Association of America, 4590 Mac Arthur Blvd., N.W., Suite 250, Washington, DC 20007-4226.
LISTSERVE: AGING WITH DISABILITY, Host: Kailes, J. FOCUS: An Internet mailing list used to periodically distribute resources and information, such as updates of the Resource List, related to aging with disability. FOR MORE INFORMATION: If you have access to Internet/e-mail, send a message to
jkailes@tsbbs02.tnet.com asking to be placed on the aging with disability mailing list. You will periodically receive e-mail related to aging with disability issues and resources.