|
This report was funded by the Wisconsin Council on Developmental Disabilities using federal funds provided under P.L. 104-183 through a grant authorized by the Administration on Developmental Disabilities and the U.S. Department of Human Services. Grantees undertaking projects with Council sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent the official position or policy of the Wisconsin Council on Developmental Disabilities.
This report is based in part on two research projects funded by grant #90DD0287 from the Administration on developmental disabilities (ADD) to the Program on Aging and Developmental Disabilities, Waisman Center UAP, University of Wisconsin-Madison. Gary B. Seltzer, Ph.D., Principal Investigator.
AN INTRODUCTION TO CEREBRAL PALSY
Any discussion of Cerebral Palsy (CP) must be based on an awareness of the unique qualities of this neurological condition which produces a wide variety of physical disabilities. It must be understood that it affects each person differently. Now that people with CP, like other people, are living longer they look back and realize that each person and family has utilized their own coping skills over a lifetime. The degree of coping needed is dependent on the degree of disability of each individual. The severity of disability caused by CP can vary from minimal to total incapacitation.
Recently, reports in the media on people with CP have tended to focus on the extremes. Most have been stories about children with the severest disabilities; children unable to walk, talk, even breath on their own. The focus seems be on the small percentage of people with CP who are also mentally retarded. While it is important to understand the needs of those children and their families, it is equally important to recognize that they, and children with less severe disabilities caused by CP, will grow to be adults and live a lifetime with those disabilities.
CP often originates when oxygen is cut off to the motor cells in an infant's brain. The oxygen deprivation may occur just prior to birth, during a difficult birth, because of prematurity, infection or by a brain injury in the first two years of life. Once the damage is done it can not be changed, but early therapy and/or surgery may increase abilities. Disabilities are most often physical but may be accompanied by a cognitive disability. The physical disabilities vary from very severe to minimal. The degree and type of disability is determined by the location and severity of the damage to the motor cells, and is usually most evident in a lack of muscle control, difficulties in coordinating body movement, and/or paralysis of the lower body. The activities most often affected are walking, hand and body coordination, speech, and swallowing. The damage may produce disabilities in combinations including any or all of these activities and may be complicated by the impact on internal bodily functions such as breathing and bowel and bladder control.
This brief background introduces the relatively new topic of aging with CP. The same medical advances, which are allowing the general population to live longer, are allowing people with CP to live long enough to experience the aging process. Living more active lives outside of institutions also appears to add years to people's lives. Only in the last fifteen years have people with CP lived long enough to be concerned about the impact of aging on bodies affected by a life long disability.
WAISMAN CENTER RESEARCH
This report is an effort to share information gathered in two research projects done at the Waisman Center at University of Wisconsin-Madison in 1994. This information is important to people with CP, their families, care and service providers, and health care professionals. It is based on research supervised by Dr. Gary Seltzer. One of two projects was a Focus Group Project for which I conducted focus groups and interviews with 20 people ages 34 to 74. The second project was a paper survey of 202 people with CP ages 21 to 74 conducted by graduate student, Amy Ho.
Survey respondents included 93 males and 109 females ranging in age from 21 to 74. A count by age shows 29 people from 21 to 30, 48 from 31 to 40, 58 from 41 to 50, 35 from 51 to 60, 15 from 61 to 70, and 7 over 70. Varying degrees, types and combinations of physical disabilities usually associated with CP are represented. About 85% reported problems coordinating/controlling body movement and/or abnormal muscle tone, while about 60% reported paralysis and/or skeletal deformities. Almost 40% had speech difficulties, and over a quarter of them had swallowing problems. The overlap in numbers indicates a combination of disabilities.
A variety of questions were asked for a variety of reasons, but this report focuses on the reported changes in abilities and functions affected by the CP. Because people were asked to report on changes occurring in the previous twelve months, the information may not reflect changes over a lifetime. Discussion in the focus groups centered on life long changes.
For purposes of the survey, abilities and functions resulting for CP were referred to as "conditions". They included those conditions most commonly resulting from CP and experienced over a lifetime including controlling and coordinating body movement, abnormal muscle tone, paralysis and affected speech, along with such less obvious affects on fatigue, breathing swallowing, and bowel and bladder control. People identified each condition they had and weather it was getting better, staying the same, or getting worse. Changes were charted by age groupings and indicate some changes, such as fatigue and arthritis, as early as 30 or 35. Conditions which people saw as getting worse and affecting walking and body coordination increase after age 45, indicating that symptoms of aging may appear somewhat earlier in functions affected CP.
Questions were asked about the frequency of general health problems experienced by people as they age. Results for heart conditions, high blood pressure, diabetes, bronchitis, broken hips, dental problems, and women's health problems are shown on the last chart. These problems appear to span all the age groupings, but it does not appear that the frequency of these physical conditions occur any more often in people with CP then in the general aging population. These and other answers in the survey and the focus groups indicate that people with CP do not see their disabilities as health problems, and many of them rated their health as good to excellent.
OVERVIEW OF PROJECT RESULTS
The survey verified much of the information gathered in the focus groups. Most prominent were the consistent reports of fatigue in both studies. In the focus groups people even in their thirties had said, "I can't do as much as I used to" or "I'm so tired". The condition was referred to as fatigue in the survey. People in every age range reported experiencing fatigue and the percentages increase with age.
Of interest is the fact that people appeared to be less aware of impact on internal bodily functions, such as bladder control and breathing. People in the focus groups tended to deny that impact previous to the discussion, but admitted to it after discussion with others. Survey respondents reported problems with bowel and bladder control in significant numbers, which increased to a high of 75% in people over 70.
It is likely that most people expect that their abilities will diminish as they age, and they do all they can to maintain those abilities. People with CP, until recently, have not thought ahead that much. They had not expected to live that long, and they had lived with idea doctors had given their parents that CP is not progressive. They worked hard as young people to gain their own highest level of functioning, and they expected to stay at that level. As they live longer and begin to experience decreasing control of body movement and more and more fatigue, they may become depressed. Survey results indicate that across all age groups 40% of respondents reported some degree of depression. Focus group participants, all of whom lived in an urban area, had social outlets, and positive living situations, felt they were coping well and did not report depression. The survey does not have enough information to firmly establish reasons for depression, but indicates that isolation and life styles play an important part in the likelihood that people will experience depression.
WCDD INFORMATIONAL PROJECT
Even the briefest review of the information from the Waisman Center research confirms the importance of getting it to people with Cerebral Palsy (CP), their families, care givers, and service providers. It becomes even more important in view of the fact that many more people with CP, including those with severe disabilities, are living in the community and making their own choices about how they live. Having some sense of what they can expect as they age is an important consideration in that planning.
With this in mind the Wisconsin Council on Developmental Disabilities (WCDD) has contracted with me to coordinate an Informational Project on CP and Aging. The new project was to present the research results to people with CP, their families, and care givers around the state of Wisconsin. Titled "Learning Together" it was designed to provide the available information while learning more from people sharing their personal experiences. Drawing from the research and the learning sessions the project was to produce a series written reports in various formats for appropriate audiences.
Learning sessions focused on the survey information on changes in abilities, bodily functions, and coping skills. Charts summarizing survey results were distributed with a brief written overview. In the belief that people want to know how age related change affects their daily lives I paid special attention to every day concerns like the threat of choking, the importance of good dental care, and fatigue and its' relationship to mobility. People's personal experience verified survey results indicating significant problems swallowing and gagging which can lead to choking and failure to practice good dental care. Participants agreed that the tendency to gag while brushing one's teeth is a prediction of how difficult it would be for them to keep dentures in place making good dental care even more important to the person with CP.
In every group someone asked about choking. It was of grave concern to care givers who were noticing people with severe disabilities having difficulty swallowing food. They felt that the awareness of the possibility of choking is the key to taking precautions such as cutting food in small pieces, not giving too much as once, and eating softer foods. For caregivers it should mean knowing how to assist someone who is choking.
Attendees at the first presentation, a statewide conference on Aging and CP, acknowledged their fatigue and loss of strength. Those who had struggled to walk all their lives knew that they could conserve their energy by using a motorized chair, but their families were resisting and accusing them of "giving up." Most helpful to them was a report on research done by Dr. Katherine Frank, Professor of Physical Therapy, at UW-La Crosse. Her research shows that people with CP use 100% of their available energy on a daily basis and build up no energy reserve. This explained why, no matter what their age, people with CP fatigue easily. Succeeding learning sessions included those study results. People continued to report family resistance to their use of mobility aids, so Dr. Frank's research gave them talking points, while encouraging them to find ways of conserving energy.
One topic, which came up over and over, but about which there is little information available, is exercise for people with CP. People felt that exercise would be of value to them, as it has proven to be for other older people, but they did not know how to exercise with their disabilities. People made it clear that they do not want the kind of physical therapy they had as children. An informational brochure on exercise from the United Cerebral Palsy Research and Educational Foundation was distributed at all presentations.
Somewhat surprising was the fact that more service providers attended than people with CP. They were eager to learn more about CP in general and made good comments about what they were observing in people they were working with. It may be that observers notice changes in abilities before the person with CP is ready to admit them. These kinds of observations could prove very helpful in future planning and developing coping strategies.
People did learn together. More information was gathered, and can continue to be shared. People with CP who attended tended to be those who sought to have their own experiences verified by the research. They were, in a sense, comforted by the fact that the project data reflected experiences very much like their own. People were alerted to what they might expect. That knowledge prompted them to share their concerns and coping strategies with others.
The purpose of the Informational Project is to give as many people as possible basic information on which to judge the impact of the aging process on their own disability. Only they can truly evaluate the changes they are experiencing, and educate their families, paid caregivers, and professional health care providers.
The primary audience for "Learning Together" was intended to be people with CP. As mentioned before, significant numbers of paid service providers attended some sessions. Their questions and comments evidenced a concern for the people that they work with and in some situations a lack of knowledge of CP. The awareness of their importance in the lives of people with CP lead me to present more basic information in later presentations and in this report.
As more is learned about the impact of aging on bodies affected by CP the more important the role of the therapist, case managers, and health care professionals will be. Many people with CP, from the focus groups through the learning sessions, have talked about health care providers who know little or nothing about CP. They vowed to take the information I provided to their individual health care providers in the hope of educating them. I now take advantage of every opportunity to take the message to present and future health care providers. For seventy years most professionals interested in CP focused on children without really knowing the impact of childhood interventions on the disability over a lifetime. Now all of us; people with CP, families, paid care givers, and health care professions must recognize the Cerebral Palsy produces disabilities which must be lived with for a life time. As with all people, capabilities change and must be dealt with in every stage of life.
Other Items "In the News":
Back to WCDD Home Page
|
DAWN
