Let’s talk: The lack of continuity of care for adults with CP

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Time. It is one of those constants in our lives that we cannot escape. It is defined by society and represents different things for different people. Perhaps it is a reminder that nothing lasts forever; that with the new day brings a promise of a new beginning. Another chance to make things right. For others, it is a reminder of what we haven’t yet accomplished, and the narrowing window in which to do so.

For someone with CP, (at least in my experience) it can very much be an enemy. It can be the subtle, almost unnoticeable decline in abilities that once was. For a lot of my adult life, I have been told that Cerebral Palsy is a “non-degenerative” or “non-progressive” disorder. According to CerebralPalsy.org CP is a non-progressive, “the brain lesion is the result of a one-time brain injury and will not produce further degeneration of the brain.” It continues by saying that “The injury and damage to the brain are permanent. The brain does not “heal” as other parts of the body might. Because of this, the Cerebral Palsy itself will not change for better or worse during a person’s lifetime. On the other hand, associative conditions may improve or worsen over time.” (https://www.cerebralpalsy.org/about-cerebral-palsy/definition)

The final line of that sentence is an important distinction that has been an area of focus for me since I was twenty years old. While it is true that the initial brain damage does not worsen, my body, like those of many others with a disability, is beginning to show signs of wear-and-tear. So, as my abilities begin to decline, one would hope that the interventions would increase, right?

Sadly, no. In my experience, the continuity of care for individuals aging with CP is lacking, to say the least. I recently read an article by the American Academy of Family Physicians that defined continuity of care as “continuity of care is concerned with the quality of care over time. It is the process by which the patient and his/her physician-led care team are cooperatively involved in ongoing health care management toward the shared goal of high quality, cost-effective medical care.” (https://www.aafp.org/about/policies/all/definition-care.html).

As a child, my life consisted of therapy, (physical as well as occupational) orthopedic surgeries, treatments of botox, and physical activity. These were all done to help manage the symptoms, with the hopes that it led to a higher quality of life. Honestly, I would say that it did. While all of this wasn’t easy, despite my conditions, I had as normal a childhood as the children around me.

Fast forward two decades. As an adult, my experience has been less about managing the symptoms relating to my conditions, rather crisis management when it becomes an emergency. Five-ish years ago I had a procedure done to re-break my tibia and fibula, as they hadn’t healed correctly from a past surgery. I began PT only after the surgery. My medical team and I spoke about supplements and medication to help ease spasticity, again, post-surgery. Why is it that my team was only focused on crisis-management? Why had the focus shifted from maintaining abilities to dealing with the problems and complications as they arose?

I want to be able to walk as best I can for as long as I can, without feeling a fair amount of pain. Or, without the necessity of an aid.

I hope that daily living tasks such as dressing and making my bed can be completed without completely draining every ounce of energy that I have.

So, if the reality is that the continuity of care is lacking for those in my community, what do we do?

  1. Trust and listen to your body– This is such an important aspect for everyone, but especially those with varying abilities. We know our bodies better than anyone. It is the vessel that we live with day in and day out. If something in your gut tells you that something is different, trust that!
  2. Collect the data– As I begin to notice that things are changing within my body, I start a journal and record my observations for up to a week, sometimes a month. I want to be able to communicate with my medical team very specifically my observations to be able to compare those with my baseline of abilities, comfort, or pain.
  3. Advocate– When it comes to my body, I am the loudest advocate in the room. If I do not feel as though I am getting adequate care, I seek additional resources, and second opinions, as well as support. I am not content to just sit back and watch things go down hill. While I accept my conditions and their reality, that does not mean that I am going down without a fight.

I believe that I, as well as everyone, is no less deserving of a thorough continuity of care simply because they age. In fact, I think it only needs to be more laser-focused. I walk hand-in-hand with my conditions, and while I accept the inevitable, that does not mean that I will not continue to utilize every resource available to me to make it the best life possible, and I encourage you to do the same!

 

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