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Aging with Cerebral Palsy: Many Questions, Few AnswersBy Barbara Bobbi Linn “In my twenties, I could easily walk from (the) 53rd Street library down to 34th Street, do a shopping cruise of Macy’s, tour the Broadway Books store, and then continue walking down to 17th Street, where my father owned a business. At 51, the year before I was forced to retire, I had difficulty walking the quarter block to the bodega at the end of the street where I worked. After that, I went downhill faster and faster. The scary thing was that no one, especially (no) one from the medical community, could explain what was happening to me. I used to be a healthy person who just happened to have cerebral palsy.” Female, age 57. 
People with cerebral palsy and their families continue to be told that CP is a non- progressive neurological disability. Although the original (brain) damage will not increase, the non-progressive description of it does not take into account the effects of CP on an individual’s body over a lifetime. Individuals report difficulties associated with aging as early as their 20s and 30s, including conditions such as fatigue, back pain, osteoarthritis, chronic constipation, the early onset of cervical stenosis, loss of flexibility, muscle weakness, dental problems, swallowing and chewing difficulties, osteoporosis, depression, musculoskeletal pain and diminished cardio-respiratory fitness. Some wonder if there is such a thing as CP syndrome, similar to post-polio syndrome. The latter was identified and researched in the 1970s, when a significant proportion of people who had contracted polio decades before began to develop new and further debilitating symptoms, which researchers traced back to the originial poliovirus. “I don’t think that there is a ‘post CP’ syndrome, but more a host of things that can happen prematurely due to the stresses on the body for someone with CP,” said Dr. Debra Shabus, a New York City-based neurologist and the medical director of the Raymond Naftali Ambulatory Center for Rehabilitation. “For example, people with involuntary movements of the neck can get a spinal-cord syndrome due to build-up of bone and narrowing of the spinal canal, compressing the spinal cord. Many people with CP get premature arthritis, resulting in arthroscopies and joint replacements.” Few research studies have examined the effects of aging on people with CP. Much of the data available is anecdotal, stemming from people wanting to know what was happening to them. In one of her studies, 80-year-old Maureen Arcand, a person with cerebral palsy who has researched CP and its effects on aging, wrote, “As people live longer and begin to experience decreasing control of body movement and more and more fatigue, they may become depressed.” A compilation of Arcand’s writings, conducted under the auspices of the Wisconsin Council on Developmental Disabilities, can be found online at www.wcdd.org . At one of Arcand’s informational sessions, Dr. Katherine Frank, a professor of physical therapy at the University of Wisconsin at La Crosse, reported on her research showing that people with CP use 100% of their available energy on a daily basis but build up no energy reserve. 
The lack of knowledge and sensitivity from medical professionals became a common theme at conferences across the country, where people exchanged horror stories. The lack of patience shown listening to people with speech disabilities adds another level of frustration. Individuals also cited incidents in which doctors or technicians aborted ordered tests because of difficulty dealing with the individual’s CP movements, rather than coming up with other ways of completing the task at hand. One woman related how an obviously annoyed radiologist claimed that her breast biopsy was unnecessary because her condition would not allow her to be still enough for a machine to stick her with pins to show the surgeon where to cut. The radiologist could have drawn dots around the site, the method used before the invention of the pin machine. When the biopsy was finally completed, it showed that the woman had a precancerous condition. Not only did abnormal tissue need to be taken out, but the woman needed information on an appropriate follow-up regimen. Too often, physicians attribute every problem to the individual’s CP and look no further for other medical conditions that are unrelated to that disability. To fill a perceived need, David Bauer and Robert Watson formed the CP Group with about 25 individuals in 2004. “Adults with CP had (and have) very few resources available to them to combat the problems posed by cerebral palsy,” Bauer said. “Particularly appalling was the lack of medical care. Aging was the most obvious area, but surgery, sexuality, pain management and depression were other areas where information was available for kids under 18 and their parents, (but) not for adults. “We felt that the experiences of others with CP were often the most valuable. But problems of distance, compounded by mobility and speech disabilities, prevented the communication with peers that people with disabilities enjoyed and used to help solve or alleviate difficulties.” The CP Group will hold its fifth annual conference, “Life and Times with Cerebral Palsy,” in October. For further information, go to www.thecpgroup.org. On the group’s message board, currently being used by more than 170 people, these are some of the questions that appear: Has anyone experienced this weird symptom that I’ve just developed? Is it related to CP? What types of remedies have been recommended? Do they work? Said June Isaacson Kailes, a consultant and disability rights advocate: “In the past we didn’t age, we just died! We are the first generation to live this long, so the question is not, ‘Will we live?’ but ‘How well will we live?’” Barbara Bobbi Linn is the founding executive director of Bronx Independent Living Services and served as chair of the New York State Independent Living Council. She is the author of the soon-to-be published memoir “Ode to a Diet Coke: Disability, Choices and Control.” |
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