At the dentist about a week ago, the hygienist took my blood pressure before she got started. Standard procedure, right? I mean, I’m not sure I know anyone who actually likes going to the doctor, but I’ve come a long way since my childhood fear and trembling.
Still, I’ve always been prone to a little white coat hypertension. At least, I dismissed it as such when I was in my twenties. Even later on, throughout my thirties and a preeclampsia scare before my first daughter was born, I wouldn’t worry too much when I saw 130/79 or 136/84. The lowest I remember it being at all in the recent past is 122/82. That was good enough for my midwife, so again I thought, “Nobody maintains 120/80 perfectly, do they?”
Well, that was before I went to the dentist the other day. My BP reading? 139/91. For the first time, I panicked. Then I remembered we had Epsom salts in our medicine cabinet! I looked up things to eat for high blood pressure and came across a two-banana-a-day protocol. I hate bananas, but I resolved to try it. And then I remembered something else, something I have only ever intuitively known to wonder about: Rates of high blood pressure among adults with cerebral palsy (CP), of whom I am one. Sure enough, the abstract I read said that in one study, adults with CP were almost 30% more likely to have high blood pressure, with rates even higher among men with CP, people over 40 with CP, and people with spastic CP, as opposed to other types. Guess which two out of three categories I fall into?
And I’m hardly the only person I know who falls into any of those categories! In fact, ever since I became a disabled adult–over twenty years ago by now!–I have observed other disabled adults I know wonder aloud, often painfully and in isolation, what would await them as they age: “You hit a pain wall after 35!” “Average life expectancy with CP is 60!”
So how does cerebral palsy affect aging?
At first these claims scared me, especially as I joined the ranks not only of aging disabled people but also of older parents I knew. But then I began to wonder, as I often do about the way disability intersects with everything: How are people actually experiencing these things? Why is it that we all seem to be panicking alone? How does cerebral palsy affect aging after all? Do CP symptoms really worsen with age? And what is the actual impact on life expectancy?
Cerebral palsy and life expectancy
While many of the people I spoke with said the same things, each person’s perspective was slightly different. Still, I believe the problem with discussing CP and aging can be summed up in a single sentence on life expectancy that I ran across while starting my research, which is:
Children with cerebral palsy can expect to live an average of 30 to 70 years.
Read that again. What’s wrong with this picture?
Is it that 30 is an exceptionally short life expectancy? Perhaps. But then, I have a friend from my middle school days whose son with CP recently passed away at the age of 14. So a short life expectancy with CP is not completely unheard of.
Is it that 70 is still considerably shorter than the current average life expectancy in the U.S. of 76 years? Perhaps. But there are plenty of other conversations to be had about how people in other marginalized groups tend to have life expectancies even shorter still.
Or is it that you don’t remember the last time you heard people ages 30-70 referred to as children? I hope so, because if you do, then you might want to ask yourself why it’s okay to refer to people with disabilities, clearly within an adult age range, as children.
As I surveyed several of the adults with cerebral palsy I know, ages 30-50, all over North America, across a diversity of genders and ethnic backgrounds, the thing I heard over and over again–the issue that seems to complicate aging with CP more than any other–is that CP, like many other disabilities, is seen as an issue of childhood.
Do CP symptoms worsen with age?
“Doctors don’t know what to do with you,” one friend, a woman with CP in her thirties, quipped. Another said, “They’ll look at you as if you are an alien,” if you are an adult with cerebral palsy.
This is of staggering concern when one considers how adults with CP are at increased risk of new neurological conditions like stroke and myelopathy, alongside the post-impairment syndrome that often manifests as chronic pain and chronic fatigue. I myself was an adult in my thirties before I learned that, despite the fact that CP is not a progressive condition, and therefore does not specifically worsen with age, post-impairment syndrome and premature aging do occur in patients with CP. I’ve even had a doctor who, upon seeing an MRI of my brain, insisted that I must have had a stroke or a multiple sclerosis (MS) diagnosis, rather than entertaining the notion that I am a functioning, well-integrated adult with CP.
Not only medical professionals, but also agencies and service providers, will consistently see adults with CP who possess any level of independence or self-sufficiency as, in the words of one interviewee, “not disabled enough” to receive services and supports, which many disabled people age out of by 18 or 21 years old, anyway.
Despite this, and indeed because of changes to one’s body brought about by the aging process itself, (as in my case) by childbirth, or by surgical interventions such as tibial derotation–a common procedure to help preserve mobility among patients with CP– available services and supports may be more necessary than ever.
Indeed, most of the people I spoke with expressed not only a need for more services as adults, but also an ongoing frustration with their lack of availability. Clients of one type of agency find themselves ineligible for services from another, even when seeking support for a variety of larger endeavors, such as moving house or job searching, alongside activities of daily living.
The lack of organizational support amplifies the challenges of adjusting to new mobility aids or communication devices, increased doses and regimens of medication, or recovering from surgical intervention–all of which can not only seem to contribute to premature aging but also increase social pressure to self-accommodate or choose accommodations, services, and supports that will not present too great a threat to the status quo at home, at work, or in one’s social life.
While using a cane or walker, changing communication and medication needs, or even surgeries and hospitalizations may all seem like a matter of course when it comes to aging in general, a bias certainly becomes apparent once disability enters the picture.
“My parents were going to put me in a home at 28,” said one person whose family member also tried to steal her Supplemental Security Income (SSI.)
Another person I spoke with lost her job of over 10 years because the company refused to accommodate her return from an extended absence due to surgery.
Yet another summed it up well by saying, “The world does not prioritize valuing, caring for, and loving disabled people. The only thing getting me through aging with CP, is other people with CP.”
With a lack of medical and other institutional support for our changing needs as we age, it seems many of us have had to imagine and grasp our own optimistic outlooks for the future.
Alongside wishes to maintain current levels of functioning and support, or for an overall positive experience of aging, comes a variety of specific hopes for the future as an aging person with CP.
One woman I interviewed expressed interest in new and developing technologies that may help her preserve her mobility as she ages. One man’s recent embrace of a mobility device as he approaches age 50, after having neither used nor intended to use one before, has revolutionized his outlook on the use of mobility aids in general as a matter of choice, fluidity, and adaptability rather than of pure clinical need.
Another person stressed their own history of a lack of access to older disabled adults with whom to share experiences, saying, “I want to be who I needed to hear from when I was younger.”
This notion of leaving a legacy or sharing experiences in order to become a part of history is a powerful one when we consider that disabled people’s stories, beyond projections within a limited range of inaccurate and stereotypical tropes, have only begun to be told. In the words of writer, scholar, and activist Leroy Moore, himself a person with CP in his fifties, “We have always been here.” This is true no matter how old we are or what issues we face, and we deserve to age with grace and dignity alongside elders of every demographic.
Kari Turner is a freelance writer and disability advocate from Los Angeles. She and her husband are raising their family in California’s high desert. In her spare time, of which she’s had little since her daughters were born!, she blogs about disability, spirituality, parenting, and faith at http://writingthetao.blogspot.com. Follow her on Facebook and LinkedIn.