Cerebral Palsy progression

25 May 2017

There are things I’m going to have to deal with. I know that my Cerebral Palsy has become more progressive. I’ve heard the same thing said by others who deal with the same condition.

Where my left side was always fundamentally weaker than my right side, I feel as though I am now more affected by my Cerebral Palsy and although that doesn’t please me, I choose to continue to take it in my stride, because there’s nothing I can do about it. Regardless of how I cope or fair, my site will always be my priority and I will work to continue with that. I am not choosing to give up on that, but my typing may be slower.

The irony is that having gone through secretarial college not knowing I had a disability, I couldn’t use a manual typewriter on my left side and where we had typing tests to monitor our typing speed, I remember being told I wasn’t quick enough and feeling disillusioned because others were doing so much better than me.

What I didn’t know then is that my left arm was also affected. Fast forward and I know why. Something else that I have come to know about that was also left out and that I am having to come to terms with. Cerebral Palsy is a progressive condition.

The Specialists don’t know that because there has been no testing or research into how we will age with the condition.

6 Responses to “Cerebral Palsy progression”

Post a Comment
  1. Bonnie Johns 25. May, 2017 at 7:44 am #

    I’m so sorry Ilana! My heart goes to you and others with Cerebral Palsy. Yet, you’re such an inspiration to so many people with disabilities, because you’re determined to fight an arrogant world and educate so many of us that simply don’t know, even when you aren’t feeling well and you’re tired.

    You’re a true gift. An angel. Please don’t ever forget that. I’ve been shunned too, because I’m slow and it’s so annoying, because I feel obligated to speed up with everyone, I ware myself out.

    Same thing with you and others who endure disabilities. It’s very frustrating.

    • Ilana 25. May, 2017 at 8:46 am #

      Thanks Bonnie, that’s so kind of you. Yes it is frustrating for both of us. We’ve both been through it.

      I’m not sure what’s worse, not knowing I had Cerebral Palsy for all of these years, or others’ ignorance on what I dealt with and yet clearly they were aware and if they weren’t aware fully, thinking that potentially it could be Cerebral Palsy.

      Being in the thick of it for so long, I wasn’t aware or consciously tapped into people’s opinions of what I was clearly failing at.

      I put a lot of it down to me and my lack of abilities. Of course now I know it had nothing to do with that, but when others don’t stop to question or ask why we’re struggling, there is no where for that struggle to go; eventually it turns into guilt.

      Years on and with the start of my journey through my blog, I understand all of it now. Because you’re taking your own journey too with me, you will understand your life too and how you were also treated.

      I’m happy were doing it together. Thank you.

  2. Brad 25. May, 2017 at 10:08 am #

    I have no doubt that Cerebral Palsy is progressive. It makes sense that whilst brain damage in itself doesn’t progress, the symptoms arising from that damage will progress in time, in the same any muscular disability will.

    It is quite shocking that little to no research is done about this. Its like you are told about the diagnosis and left to find your own way. I would have hoped modern society would be better than that.

    • Ilana 25. May, 2017 at 2:33 pm #

      Thanks. Yes, it was explained to me a while back now why there would never be any research in my lifetime, and each case is different of course, but how anyone ages with brain damage can be looked into, just not specific cases.

      I absolutely agree with you about society though. Cerebral Palsy is one of those things, you know about, you talk about for a short while and then everyone forgets about it and us.

      It’s a forgotten condition and because it stems from when we’re born it’s easy for us to stay forgotten.

  3. Randy 25. May, 2017 at 1:48 pm #

    Now that you mention it, I’m sure that it is very possible that the symptoms could get worse over time. I haven’t done my homework on this issue, but it would be interesting to find out if they have done any studies about it.

    I’m sure that this explains a lot for you, where you felt like a failure but it wasn’t your fault because of the issue with your left side. I watched my daughter go through this with her right side and having such difficulties even performing the simplest of tasks with a hand that barely worked. Thankfully she ended up being naturally left handed which definitely worked out for her.

    So sorry that you’re having to deal with this even more as you get older. It is great that you’re trying to stay positive about it as much as you can under the circumstances. I think actually knowing what the real problem is, helps out a lot rather than not knowing and wondering what you’re doing wrong.

    My parents buried me under that mountain of guilt, shame and remorse to the point where I thought I was such a horrible person and deserved whatever punishment I received. This is why I’m so conflicted on my feelings about my dad passing, seeing as he helped to create a lot of my issues. He was a very troubled soul, I know, but it doesn’t change the facts about my childhood.

    My biggest concern actually, before I go on a rant, is about how quickly time passes, seeing as my dad did pass on and it’s a reminder that our time is limited. People like him never deal with any of their issues, so it’s no wonder they get passed on from generation to generation.

    He was always one to cut and run when things got too stressful and complicated rather than stick around to deal with them. They like to call that a geographical cure in AA, which makes sense and describes most of my childhood.

    I’m just so very tired of fighting where most of the time I’m not even sure of what I’m fighting against. (Most of the time I have that feeling of being a ‘rebel without a clue.’ I just know that I need to make the best of what time I do have and to concentrate on the things that I can change instead of focusing on what I can’t.

    • Ilana 25. May, 2017 at 2:47 pm #

      I appreciate your kind gesture Randy. Thank you. Yes, it helps to have support from those who know exactly what we go through.

      You’re right about your dad, he was a tormented soul this side of life. But all you can do is accept that he was and try to move on so that you make changes to your own life, without becoming embroiled in your own personal battle around his issues.

      I know not having had support, how important it is to have support. Sadly, you didn’t get it from your parents, but you already know, it’s massively important for you to continue to do what you do for your daughter around what she deals with.

Leave a Reply