CONFLICTS OF INTEREST The author declares no conflicts of interest.
Aging with cerebral palsy and other disabilities: personal reflections and recommendations
Article first published online: 3 SEP 2009
© 2009 The Author Journal compilation © 2009 Mac Keith Press
Developmental Medicine & Child Neurology
Special Issue: Adults with Cerebral Palsy: A workshop to define the challenges of treating and preventing the secondary musculoskeletal and neuromuscular complications in this rapidly growing population.
Volume 51, Issue Supplement s4, pages 12–15, October 2009
How to Cite
JONES, G. C. (2009), Aging with cerebral palsy and other disabilities: personal reflections and recommendations. Developmental Medicine & Child Neurology, 51: 12–15. doi: 10.1111/j.1469-8749.2009.03427.x
- Issue published online: 3 SEP 2009
- Article first published online: 3 SEP 2009
This article describes the lived experience of one 64-year-old woman who is aging with cerebral palsy (CP) and other multiple disabilities. Reflections are offered on coping with secondary conditions and functional decline; fighting the effects of pain and fatigue; and managing well-meaning, but misdirected, medical advice. Recommendations based on the author’s personal and professional experience with disabilities, including CP, are presented on the aging process and on preventive care for adults living with CP.
This paper describes my experiences in aging with cerebral palsy (CP) and other disabilities. It is not meant to be a scientific treatise. In sharing my reflections and recommendations, I hope that the reader will gain a better understanding of: (1) the lived experience of aging with CP; (2) the need for medical care focused on preventing secondary conditions, including musculoskeletal pain and fatigue; (3) the need to consider the interactive effects between CP and other co-occurring disabilities; and (4) the benefits of a strong partnership between adults with CP and the medical community.
Aging with CP drops surprises into your life. Balancing the effects of fatigue and pain on our daily functioning is our need for creativity and innovation to carry out our activities of daily living and adult social roles.
Doctors mean well, but they sometimes underestimate human potential in challenging circumstances. Take my situation, for example. I was born 3 months early, tipping the scales at a whopping 2 pounds, 12 ounces. The doctors gave me a 10% chance for survival. By the time I was 6 months old, my parents had been told that I would never walk, never talk, never mature intellectually, and never see well enough to attend public school. There was some discussion of my being institutionalized. I had CP and severe retinopathy of prematurity (total blindness in my right eye and a 95% vision loss in my left eye). Eventually, however, I did walk, albeit with a spastic gait, and I talked so incessantly that my parents considered wearing earplugs.
During my preschool years, treatment for my CP consisted of physical therapy and a leg brace for my right leg, which I had to wear at night. I hated that thing! It hurt so much. Despite my repeated pleas, my parents would not remove it, so I experimented until I learned how to detach it from my orthopedic shoe, once I thought they were both asleep. After age 5, doctors told my parents that CP was a stable condition, and no further treatment would ever be needed. I guess they thought I wouldn’t grow to be a senior citizen.
Growing up with CP is hard on the body. I held the family record among the four kids in our home for broken bones and lacerations, including one that required 122 stitches. Of course, it would have helped had I been able to see where I was going, especially in unfamiliar territory.
Having CP and being legally blind can be socially isolating. In my elementary school years, I attended a Braille class and then a ‘sight-saving’ class after my special reading glasses had been invented. I dreaded recess, with its taunts and name-calling from children who didn’t understand my disabilities. Their cruelty hurt, but not as much as the rejection I experienced from a teacher who should have known better. My best friend, who was also legally blind, and I wanted to sing in the school chorus. We both had good voices and could memorize music rapidly. The music teacher was adamant in her rejection. She said that she didn’t want any children with disabilities in her chorus. By the time I reached seventh grade, I was allowed to attend regular classes at the neighborhood school around the corner from my home. While my classmates relaxed after school, I went home to hours of painstakingly slow reading and practicing my handwriting. Every pen I chose as a writing instrument seemed to have a mind of its own. It took years of practice before I could produce legible documents. As I worked, the superintendent of schools’ mandate echoed in my head: ‘If she keeps up with the work, she can stay; if she falls behind, she’s out.’ In an era devoid of special education programs and assistive technology in secondary education, I made it my business to keep up and finished high school with honors.
In my junior year of high school, I was referred to our state’s vocational rehabilitation (VR) agency by a high school guidance counselor. When I met with the VR counselor, he dismissed my college plans, saying, ‘I don’t think that you are college material.’ I ignored him, applying for and winning a 4-year college scholarship. When the VR counselor received my grades for the first quarter of my freshman year, he had the grace to call and apologize. I had missed the criterion for the dean’s list (a 91-point average) by one-quarter of a point.
All through high school and college I experienced periods of massive fatigue and some muscle pain, but it never crossed my mind to see a doctor about it. In our family, we children weren’t taken to the doctor unless we broke a bone, couldn’t stop bleeding, or were so sick that our parents thought we might die. I forced myself to keep going because I believed that there was simply no other alternative. I graduated college magna cum laude in 4 years, but I was turned down for graduate school specifically because of my disabilities. The dean of my university was so astonished that one of his best students had been denied admission to a graduate program that he called the dean of the university that rejected my application. He was told that, on the basis of my interview with one of their graduates, the admissions committee did not feel I had sufficiently accepted my disabilities. Today, such reasoning would be illegal.
So, armed with my new diploma and a degree in sociology, I submitted applications to 30 local social service agencies. They liked my credentials, but they didn’t like my disabilities. All of them slammed their doors in my face when I reported for an interview. In desperation, I contacted my new VR counselor for advice and subsequently was hired by that agency as a rehabilitation teacher in its blind-services program. My job involved making home visits throughout the five-county metropolitan area to adults who were blind or visually impaired, teaching them skills that would improve their functioning in their homes and communities. I walked several miles every day, chased buses, and kept the shoe repair shop in business. My biggest problem, other than reading bus and street signs, was climbing bus steps and keeping my balance on moving vehicles when no seats were available. Buses in the mid-1960s were not disability-accessible, and my poor balance resulted in frequent falls. I remember one particularly mortifying experience when the bus on which I was riding came to an abrupt stop to avoid hitting another vehicle. My slender, miniskirted body, with its below-the-waist–length hair, rocketed through the air and landed squarely in the lap of a young businessman occupying a side seat. I apologized profusely as I struggled to stand and locate a handrail. He just smiled and replied, ‘Ohh, that’s all right!’
I married at 24 and had two children – a daughter when I was 29 and, a year later, a son. During my pregnancies, neither of my doctors ever discussed my disabilities or their possible influence on the course of the pregnancies and deliveries, other than to say afterward, ‘We’re keeping you in the hospital longer because you had a harder time than most women.’ They ignored my postpartum reports of blurred vision and headaches. Later visits to my ophthalmologist revealed that I had had retinal hemorrhages during both deliveries, which subsequently required surgical intervention to prevent retinal detachment.
In my early child-rearing years, I learned to adapt to the challenges of mothering two babies and having CP. I never used sharp objects when caring for my children. With my poor fine-motor control, I didn’t want to stick them with sharp diaper pins. Measuring and administering medications was particularly difficult because of my problems with manual dexterity and low vision, but I learned with practice how much pressure to apply to the medicine dropper so that I could administer the proper dosage to my babies. Lifting and carrying my little ones from their cribs to the rocking chair or changing table took conscious thought on my part. I was always careful to make sure that I was balanced when I picked one of them up. The thought of falling with a baby in my arms terrified me.
Although I lived most of my early years with persistent fatigue, I had only occasional intermittent musculoskeletal pain. I thought I was home free – until I turned 36. My pain became intense, pervasive, and persistent. For years afterward, I lived in a sea of pain. Every joint and muscle hurt. Doctors said, ‘You can stand it. Live with it.’ One physician tried a course of cortisone, which helped for as long as I was taking the medication. Another doctor diagnosed Sjögren syndrome and tried a non-steroidal anti-inflammatory drug. That treatment provided the most relief I’d had in 6 years, but the pain never totally vanished. I could get away from it for 2 or 3 hours at a time while I slept, but it always jerked me awake several times every night. I was so focused on pain relief that I didn’t realize that the Sjögren syndrome was slowly beginning to destroy my hearing.
In my mid-40s, I began wearing hearing aids. Also at this time, the fractures started. They continued over the next several years, affecting my ribs, elbows, ankles, feet, pelvis, and right hip. Doctors treated my fractures, but they never questioned why I had sustained so many fall-related fractures. In one particular case, I was told that two non-union fractures in my right foot would never heal because of muscle contractures caused by my CP. I had always walked with my right foot turned in, causing most of my weight to shift to the outside bones of my foot. Because of this, doctors advised against corrective surgery, saying that with my ‘deformities,’ the fracture site would continue to be stressed, and the surgical outcome would not be favorable.
Because none of the medical professionals I was seeing seemed to be concerned about the possibility of bone loss associated with my CP, I did some research on Medline and pressured my primary care physician to test for osteoporosis. The DXA (dual-energy X-ray absorptiometry) showed osteoporosis in my hips and spine. I began to dread falls even more and added another condition to my collection of things to live with. By the time I reached my 50s, I began using a support cane for ambulation, in addition to the white cane I already used for mobility because of low vision. After my hip fracture, I graduated to two support canes. This took some juggling because I still needed my white cane to ‘see’ where I was going. I was running out of hands!
About this same time, I began experiencing shortness of breath. When I asked one doctor about it, he said (without listening to my lungs), ‘Oh, you’re just out of shape.’ A short while after this conversation, another physician (who did listen to my lungs) diagnosed asthma. My pharmacy frequent-flyer miles increased again.
Turning 60 brought more high-intensity pain and severe muscle spasms that refused to abate with home remedies. Tests revealed severe degenerative arthritis in my spine. The doctor attributed my muscle spasms to CP and added muscle relaxants to my medication regimen. By this time, my hearing loss had progressed to the moderate/severe stage, which meant that it was more difficult to pick up environmental sound cues that were crucial for safe navigation. I was using a walker for ambulation and could no longer walk and perform most activities of daily living without pain. Every task took longer to complete, and many activities had to be broken down into smaller segments and spread over time. Sleep eluded me every night because of constant pain. In addition to over-the-counter medications and occasional prescription drugs for pain, I tried using a heating pad on the places where the pain was most severe. I prayed a lot, read the Bible, and distracted myself from focusing on the pain by listening to audio books. Once the pain lessened enough for me to go back to bed, I tried to sleep until 4:30 am, when I had to rise and get ready for work. Balancing the benefits and side effects of multiple medications became a daily challenge. I felt groggy from constant sleep deprivation and was reluctant to take anything for pain during the day that would cause more drowsiness. By this time in my life, I had earned two master’s degrees and a doctorate, and I was working as a researcher in the area of disability. Pain or no pain, I needed to be mentally alert to fulfill my job responsibilities.
Aging with CP, secondary conditions, and other disabilities is a constant struggle. I have had to acknowledge and live with functional decline and cope with ever-present pain that will remain lifelong. While my physical situation is discouraging at times, it also energizes me to seek new adaptive techniques to carry out activities of daily living and work responsibilities and enjoy life with my family and friends. A willingness to change and adapt and to seek information are essential qualities for successful aging with CP and other disabilities. They make the difference between existing and living with these conditions. As an older adult, I have come to the realization that in addition to the coping skills I have used in the past, I must take responsibility for acknowledging when I need help and asking for that help, and I must prioritize tasks and occasionally say ‘no’ to additional family and community responsibilities.
The following recommendations are based on my personal experience and on more than 20 years of teaching and clinical experience in the disability field. They may be applicable to any single disability but are directed, as requested, specifically to addressing musculoskeletal pain and fatigue associated with CP.
Forge collaborative doctor–patient partnerships built on mutual respect
As we age with CP, prevention of functional decline and further disability forms the foundation for a positive quality of life and a sense of personal well-being. Achieving optimal health requires a strong partnership between adults with CP and their healthcare providers that is built on mutual respect and information sharing. Those of us with CP bring to this partnership an abiding knowledge of what it is like to live and work with CP and its secondary conditions and age-related effects. Our doctors have the clinical expertise needed to collaboratively develop therapeutic and pharmacological interventions that can help us manage ever-present musculoskeletal pain and fatigue. Problems arise when we do not listen to, trust, and respect each other.
Identify and collaborate on interventions to address problems with musculoskeletal functioning and pain management
While it is true that CP has common patterns of manifestation among adults, it is equally true that CP affects each of us differently. These differences extend to the effects of CP on our physical bodies and health status, our mental status and psychological health, and our social and physical environments. These domains interact to affect our musculoskeletal functioning and the ways we experience and cope with pain and fatigue. The most successful clinical interventions to support musculoskeletal health and pain relief incorporate state-of-the-art medical care with knowledge grounded in the lived experience of aging with CP.
Incorporate consumer input into research efforts designed to overcome knowledge gaps associated with musculoskeletal functioning and pain management issues relevant to aging with CP
The effects of CP on an aging population present a host of complex issues that need further investigation. Prevention of musculoskeletal functional decline and its associated pain requires tracking of the primary condition, as well as of concomitant secondary conditions that might exacerbate the negative health outcomes and detrimental functional effects of CP. Inherent in such efforts is the need to involve adults who are aging with CP as planners, advisors, and participants. In the past, researchers have involved us as participants and advisors. Sometimes they have adopted our advice, and other times they have ignored it, but seldom have we been invited to participate in the development of research protocols. Including knowledgeable adults who are aging with CP in the developmental stages of a research project aimed at benefiting them might eliminate problems before they occur and strengthen the potential success of the project’s outcome.
In this personal account, I have highlighted some of the effects of aging with CP and other health conditions across my lifespan by describing pivotal developmental stages and outcomes. I acknowledge that my experiences may or may not be typical of those encountered by other adults who are aging with CP. I offer them here as a springboard, to be used for thinking about and addressing the lived experience of aging with CP, in the hope that the medical community can work with adults with CP to free us from pain and improve our physical functioning and well-being. Because many of us who are aging with CP also cope with secondary conditions and other major disabilities, it is essential that healthcare providers understand the interactive effects of these conditions. Addressing one condition without recognizing the impact of other coexisting conditions will most likely result in outcomes that are less beneficial than they could be.