Cerebral Palsy & me

Ever since I was first diagnosed with cerebral palsy, I have worked tirelessly to find out as much as I can about it, but the more I meet with a brick wall, the more determined I am to find out what I deal with.

Ever since I can remember I have always worked with logic. If something makes sense and I understand it, I go with it. The problem is that I know what I deal with is logical to me, but because there is little or no information out there, it’s not always easy to verify my view of things.

I knew that when I started my journey, I wasn’t guaranteed a diagnosis, let alone an understanding of my symptoms, but in many ways, having both has made life even more frustrating. When we have no information at all, we tend to muddle through without asking questions and accept where we are.

Speaking my own truth for the first time brings a little comfort. Just having someone to listen for the first time, helps.

2 Dec, 2010

8 thoughts on “Cerebral Palsy & me

  1. I appreciate your tenacity in the quest for truth and complete answers when it comes to your health.

    I would think of this as a simple human right. Something that doctors should be well prepared for when they give a diagnosis and it seems to be something we have to demand and search for after a diagnosis.

    I know with my Bipolar Disorder everything is so vague and there is actually so little fact where the brain is concerned dealing with Bipolar Disorder. There are many theories where this is concern that are delivered as facts but in reality they are only conjecture.

    Hopefully you will find enough facts to satisfy your needs. I certainly hope so and if not I am sure you will find a way to cope.

    1. Brian I am beginning to think you are right on all problems associated with the brain. As of today, I am still no further in my quest to find out about my CP and what I am dealing with.

  2. I know how you feel but I want you to be careful because knowing too much can be hard to deal with too.

    Little steps is always good. You only found out a year ago. You know who you are and no Dr can tell you anything different. I know you would have known earlier, but you wouldn’t be you if you didn’t have what you had. So be careful on how much research you do at once.

    You could become depressed over this and that’s not what I want. I want you to stay just like you are, positive.

    1. Colleen you are so sweet. Thank you for your concerns. It’s funny but I have always needed to know what I’m dealing with, ever since I was a little girl, that makes me stay positive. Not to know, makes me more frustrated and less positive.

      Odd I know!

  3. You are so right. Doctors are ready to give out the diagnosis but aren’t ready with the answers or explanations.

    It is so frustrating to search and search and still not have the answers to the questions. I think doing what your doing is great. You deal with things so well and I’m sure with your drive you’ll find the answers you need.

  4. One does tend to lean toward that which is logical, and one generally tends to accept a definition once it has been defined, like ”ok, circular means round I can grasp that,” but things aren’t that cut and dry with CP, as I am finding out.

    We get definitions for CP with terms like ‘lesions on the brain, or hypoxic insult,’ and by definition I guess they are accurate; but the definitions now need to be defined themselves.

    The thing is the doctors are programmed to spew off these terms because they don’t think they are supposed to engage in hand holding or nicely padded words. because the truth is, they simply don’t know what our future holds in terms of CP and how it will affect our daily lives.

    The brain is so complex and so much research is still needed to fully understand it. So they won’t say, you have atrophy over here you’re likely to walk with a limp, they would more probably say, you have atrophy here your gait maybe affected but I’m not sure to what extent. All in efforts to protect themselves in case they give a positive outlook and it turns out negative, all because they don’t have enough information.

    In an age where the human genome project has been decoded, I think the brain and all its complexities should be understood a little better, for those of us seeking in depth knowledge and thus power to impact or at least have a say in how our lives turn out.

    I think our best bet to in depth answers is to take the limited information the doctors give, observe the way our body works, combine the two, and therefore try to find our own definitions as to why our bodies work tehy way they do.

    I sincerely hope you find the answers you are looking for, if such knowledge will bring you peace of mind and closure.

    1. You are absolutely right, but having been told why there is no research into CP, I don’t think it will ever happen in my lifetime, unless someone decides there needs to be. There are too many interpretations of symptoms and diagnoses relating to CP so it will probably never happen!

      We can partly self diagnose ourselves on what we deal with, but again the doctors will never be able to confirm what we think we deal with. I have more-or-less tried that route already, already I have one more door to open.

      For me looking into what I have so far, although won’t be full closure will go some way for me to understand where I’m at. It isn’t ideal, but it’s life and the logic behind that will help.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Order my new book

Ilana x