Cerebral Palsy & ageing

10 Oct 2016

How we cope with the emotional impact of Cerebral Palsy, is the difference between us struggling; or us adjusting to life with the condition.

Ageing with the condition gives us greater understanding of the condition, as well as giving us a more refined awareness of our situation. It’s of no surprise of course to hear that adults with a disability are three to four times more likely to suffer from depression, than those without a disability, like Cerebral Palsy.

It’s an all-embracing condition that is capable of bringing us to our feet, with inescapable feelings that include hopelessness, sadness and despair. Unfortunately, physical impairment is part of the Cerebral Palsy condition and becomes part of our every day lives.

Couple that with chronic pain and it’s easy to see why depression and anxiety is linked to those of us who deal with Cerebral Palsy. It is important that any psychological issues to do with ageing around a disability and pain management are treated by medical professionals.

6 Responses to “Cerebral Palsy & ageing”

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  1. Bonnie Johns 10. Oct, 2016 at 6:26 am #

    Ive been so desperate for an answer with my Neurologist that every time I get half an answer from him, sometimes I wonder if it’s worth the hassle. After seeing Muscular Dystrophy typed on papers for the hospital when I asked him about it, he said I could have it.

    When both my parents asked him the same question of having Cerebral Palsy he gave an direct answer of no. When my mom asked the same question, my dad did about the possibility of Cerebral Palsy he said verbatim, ‘I don’t know.’ that’s why I’m referring her to SDSU, so frustrating!

    I’ve noticed as I age, it gets harder to move around that itself causes anxiety and depression. Sometimes I feel that I fail my kids, because I can’t go out to play kickball or run with them.

    My girls are older now, so they have a better understanding. When they were babies, it was so hard to pick them up and place them on my hips. At 20lbs I had to use both arms to hold my babies, unable to use one like every other mom.

    I don’t have the energy like I wish I did and I should in my 30’s but don’t. Mom and dad said as a baby and toddler, I was happy to sit around because it was so hard. To simply move and play like a kid usually does.

    As an adult that hasn’t changed much! My mom thinks now I don’t move around as much as I should, like she forgot the difficulty, but she’s more afraid of me being in a wheelchair if I don’t push myself.

    That’s her anxiety and I can understand that.

    • Ilana 10. Oct, 2016 at 8:54 am #

      I totally understand your frustrations Bonnie, because they were my frustrations too growing up not knowing what I had; although I wasn’t great at masking my anger.

      I would never want you to give up on finding that diagnosis, however hard it becomes. It’s your open door to being pro-active living with what you deal with. You also owe it to yourself and your children, particularly if you have Muscular Dystrophy because that may affect your children too.

      From what you say in your responses when I blog about Cerebral Palsy, this isn’t about you getting your back on anyone. Like me you want and have a right to know what it is you have. Sometimes it’s the only way we have closure. We cannot grow spiritually and emotionally without it; particularly because we will have our up and down days.

      As you say, it’s also important to have that understanding on how you will age with what you have, but you have to know what that is first. If you have Muscular Dystrophy you will age completely differently to that of Cerebral Palsy, so it’s important you know and stick with it.

      If I can help you with anything please let me know Bonnie. I understand.

  2. Bonnie Johns 10. Oct, 2016 at 8:41 pm #

    Thank you Ilana, you’re an absolute sweetheart. Being born so premature, Cerebral Palsy would make more sense with the brain damage.

    The weak muscles and having a hard time staying awake etc, could make sense with Muscular Dystrophy too. Don’t worry I won’t give up. I was having a low moment when writing my comment. I’m sorry.

    • Ilana 10. Oct, 2016 at 8:53 pm #

      Don’t be sorry for something you’re not responsible for. Low moments come when we least expect them, but having to deal with a condition like Cerebral Palsy or Muscular Dystrophy can bring about a multitude of feelings.

      I have confidence you will find out eventually. Being born prematurely makes it more likely to be Cerebral Palsy as you say, but unless you have Muscular Dystrophy in your family, Cerebral Palsy seems to me to be the odds on favourite, for me.

      We always say things when we’re at our lowest. It’s easy to let go in that moment, but I know you won’t give up.

  3. Tim 11. Oct, 2016 at 9:40 pm #

    You and your disability have already promised to grow old together and with ageing you have dignified your reality.

    And you won’t keep still; you just keep making a lasting impression.

    • Ilana 12. Oct, 2016 at 8:13 am #

      Thanks Tim. I think somewhere in my psyche, I had already made the decision this was something I had to deal with; put a positive slant on something that had always been so negative for me.

      There really was no where else for either of us to go. I had to start making positive choices around my disability. My Cerebral Palsy is something that was born with me and will die with me. I have to make the best of it; we both do.

      As for the lasting impression, I never came into writing thinking about that, I needed to get my experiences straight; but if others get out of my blogs what I get out of them and they make a lasting impression; they’ve done more than serve a purpose.

      This has become my reward and I’m more than happy they help.

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