I'm Over 18 and I Still Have CP: On Aging with a "Childhood Disability"

I’ll never forget my first doctor visit as a college student in Arizona. I was sick, away from home, and navigating a new health care system on my own for the first time. The doctor looked up from my chart, confused.

Cerebral Palsy? I thought that was a childhood disease.

When I woke up on my 18th birthday, I still had Cerebral Palsy. My "childhood disease” hadn’t gone away.

This idea that Cerebral Palsy is a childhood disease (or a disease at all) might be cringe worthy, but it’s a common one. Given that Cerebral Palsy is diagnosed before the age of three, the vast majority of physicians and physical therapists who treat CP deal exclusively with a pediatric population. Early intervention is key- therapeutic and surgical interventions are considered most effective when done early in childhood. I was lucky to have some of the best doctors in the field, and received all the most effective surgeries, medications, and therapies available at the time. Although my family and medical team were always supportive of putting my health first, at the time I had bigger priorities. To me, staying in school and developing friendships was more important than missing months of school for an optional surgery or perfecting my walking in physical therapy. Focused on my social life and academics, I never really gave much thought to pursuing treatment any further than absolutely necessary. I maintained this mindset throughout high school and even college. Who has time to think about CP when you’re chasing a degree?

Times have changed. Now I’m 24, I have that degree, I’m at the start of my career and in a happy, healthy, relationship. My body has also changed. Although Cerebral Palsy is not progressive in the traditional sense, years fighting against spastic muscles and using a wheelchair are starting to show their side effects, and I am feeling significantly hindered by my spasticity. For the first time in my life, I feel like I am in a place to truly evaluate my physical state, and what I want and need to live a happy, comfortable, healthy life. My views on treatments are different from some of the decisions my parents made for me as a child.  To me, this seems like the perfect time to make important, informed decisions about potential treatment, but in the eyes of so many medical professionals, it’s too late.

So many tried and true treatments for children seem to be off limits for adults dealing with the same issues. When seeking treatment, myself, and so many of my friends, have been met with confusion and resistance.

“Well, you’re already 24, we do this for children”

“There isn’t much scientific information supporting that procedure for adults”

“I’m sorry, but I don’t have a magic wand.”

Through these misadventures in medicine I’ve learn to be a stubborn and outspoken self-advocate, and have been lucky to find a doctor who is willing to take into account my ideas, requests, and concerns. Together, we are open to exploring every option available to me. In the past year or so, I’ve tried everything from Botox Injections to massage therapy, and I am just beginning to explore the possibility of an Adult Selective Dorsal Rhizotomy with Dr. Park in Saint Louis. In researching every possible avenue, I have just began to feel like my body is my own, and that my health and happiness is in my hands.

I don’t aspire to be a marathon runner, or even to kick my wheelchair to the curb. I am realistic in knowing that we are a long way from finding a true cure for Cerebral Palsy. I simply want to be as independent, comfortable, and happy as possible.

It's time for medical professionals to wake up, and see that children with Cerebral Palsy turn into adults with Cerebral Palsy. Our needs grow and change, and science refines treatments every day. When we reserve new technologies and treatments for children, so many adults are left to deal with disabling conditions that could be improved. 

I'm over 18, and I still have CP. I've got a lot of life left to live, and I'm determined to make it a great one. Stay tuned!

Comments

  1. Hi Allison. Great perspective. My 22 year old son has CP. I joined this group to see if I could help him network with others his age. Your article is a wonderful commentary on what it's like to live with CP as a young adult. Thank you for shedding light on the subject.

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  2. I'm 30. Have Spastic Diplegia CP. Adaptive CrossFit Athlete. About to get married. And feel like I'm in the same place with doctors. Seriously thanks for sharing.

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  3. I have hemi spastic cp and just turned 18 in october! I fee ya on this one! I blog @ momentswithmiranda.blogspot.com

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  4. Well said. I am 64 with spastic diplegia CP. From those I've connected with most of my generation didn't understand these issues until our 40's. Keep pushing on!!!

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  5. There are medical experts that are out there that do see and recognize that CP continues to be an issue in adulthood. Not sure where you are finding these doctors that say what you stated above, but my doctors have had no problems with treating me and the issues related to my CP which is primarily my feet. I had to have the Achilles tendon lengthening done on the right foot again in 2008 and once to the left foot in 2011. The Podiatrist also put me in braces, and I have been in braces for almost 10 years to help me with the way I walk even though I can walk on my own power as well.

    But there are also other medical conditions that can occur that can cause pain and other symptoms making it seem like it's the CP when it's not. Blaming everything that goes on with your body solely on your CP is a very dangerous game to play and also sets a very dangerous precedent. My CP now is the way it was when I was a child, and will continue to be such until the day I die. Yes, I have CP, but I also have other medical problems that cause me a great deal of pain.

    But please don't ever say that medical experts are not up on the fact that there CP occurs after 18 years old because there are doctors out there that are up to date and recognize this fact. There are plenty of them, and they also acknowledge that CP does not always cause the problems that so many want to blame when things go wrong with the body. I urge you to get yourself checked for other things because our bodies, CP or not, are capable of having other medical problems and they can have symptoms that make it very easy for some to think it's CP solely.

    And as for those doctors that don't see it, as I said I don't know where you are finding them but chances are they are much older because as I said there are medical professionals out there that do recognize and acknowledge that CP still occurs even in adulthood. I am very grateful for my doctors and the help they give me as well as recognizing that yes, other things can occur and diagnosing them as quickly as possible. And in case you are wondering my age, I am 45.

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    Replies

    1. Hi Kristy,

      If you read my post all the way through, you'll see at the end I do have a very supportive doctor now. I am not blaming the medical field or my CP for anything, simply describing my experiences in seeking treatment as an adult- which has been quite a bit harder than as a child.

      Everyone with CP exists on a wide spectrum and no one will have the same experience.

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  6. I love you! My daughter larena has cerebral palsy she has 2 kids the state of az keep removing from her they her rolling they hating she smimes marj....thats it! And there mad at that we want a stand up chair.... Nothing she is constantly strapped in home cause she remains under the magnifying glass. Her name is La Reina means the Queen and she would love to meet you please email her at larenam2006@yahoo.com

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