A non-progressive disorder

According to medical care professionals, Cerebral Palsy is a ‘non-progressive disorder’ that the physical functioning of a person with Cerebral Palsy will remain the same throughout that person’s life. I have been told the same thing myself and this is simply not true.

In the last six months, new physical problems have emerged that don’t correlate with the ageing process, or my age. For those of us who deal with Cerebral Palsy, the physical effects of cerebral palsy as we age will become apparent a lot earlier than our non-Cerebral Palsy counterparts.

I am under no illusion about that. Cerebral Palsy is a developmental disorder in which physical functioning can deteriorate prematurely as a result of poor mechanical efficiency. Since I didn’t have this physical problem before and I do now, it is clearly a progressive disorder, but one that we can easily prepare for. I am lucky that because my Cerebral Palsy is mild, my physical problems haven’t presented sooner.

Cerebral Palsy charities like Scope and UCP seem to be more informed about the problems associated with the condition, more than the medical profession are. There is no medical help or guidance about cerebral palsy progression past the age of 18 and the information already out there on how we will all age with the condition is very limited. It would be interesting to hear from anyone in their 60’s + who are still living with the condition.

My neurologist said that as we age, so will our brain cells and will therefore begin to experience more physical problems earlier. Unfortunately, our organs will always have to work harder to compensate. It stands to reason that as we go through the ageing process that will continue to prove more difficult.

22 Jun, 2014

6 thoughts on “A non-progressive disorder

  1. Good information to know. Hopefully more research will be done and more people will be informed about this disability.

  2. I’ve had to wonder about this myself as my daughter has gotten older and realizing what could happen, which really scares me!

    Things like her having a seizure and possibly losing any progress she had made was always in the back of my mind. I’m thinking that’s probably the biggest reason why I’ve tried pushing her to get out and do things because she may not always be able to. I hadn’t realized the doctors list it as non-progressive which doesn’t make a lot of sense under the circumstances.

    I would assume that someone with CP would have to deal with issues that could get progressively worse over time. I’m not a doctor but have studied about it and have been involved enough in my daughter’s life to see that changes can occur.

    I’ve had to think about things like not being a grandparent, because I don’t think she could be off her meds long enough to have a child. It would be great if it wasn’t always progressive but the reality is that things can change.

    1. Thanks Randy. Yes things do certainly change. I feel for your daughter too. There is no funding into this because we’re all damaged differently, it would be difficult to ascertain how things will change fully, which is why there is no research.

      Suffice to say, I believe changes for those of us with CP will occur earlier than our counterparts. I’m not sure in my lifetime whether any more information will be made available. Perhaps the medical professionals should just accept there may be changes even if they’re not completely or one hundred percent sure.

      It’s always better to err on the side of caution. I’m living proof of how things can change.

  3. Hey, I am from India. My elder sister suffers from cerebral palsy (hemiplegia severely affected) and she is in her mid 20’s now.

    I have seen my parents go through lot and doing every possible thing for a cure, from doctors to religious rituals but everything in vain. I have seen her improve really slow intellectually, but there were no signs of improvements in stiffened muscles of her hand and leg, rather they degraded with age.

    I am a student of rehabilitation robotics and neuroscience. I was surfing through the internet on neurology of cerebral palsy and found this post on non progressive disorder.

    The disease inside the brain that causes cerebral palsy is non progressive, but the motor functions that it affects are progressive and can be treated (not completely, I should say improved) at a younger age using proper physical therapy (hopefully based on the current research in pediatrics).

    The motor functions are related to neural circuits and as the brain disorder is non progressive and no cure has yet been identified, so as soon as the child is taken off from physical therapy (usually hoping that they have had enough pt), the brain is still not strong enough to perform motor functions.

    There has to be some neuro-rehabilitation techniques possible to cure this and improve the brain condition.

    1. Hi Srikesh and welcome to the site. Perhaps it’s because there is very little research out there that your parents did as much as they did for your sister.

      I used to live with hope that my foot and leg would miraculously get better. I had no idea what my condition was, or why I presented in the way I did, until I learned what it was and then realised it never could.

      When we don’t know or have answers we live in hope that something will change. But with any condition it’s important to work on the presenting symptoms and educate ourselves in what we’re dealing with.

      With cerebral palsy exercise is one important element and that must continue for the rest of our natural life. That is what I was told.

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