The Cerebral Palsy (CP) Thread

PropertyOfALadyPropertyOfALady Colders Federation CEO
edited July 2017 in General Discussion Posts: 3,533
Hello all,

On the advice of @DarthDimi, here is a cerebral palsy thread. Something I never thought of creating, but I now think is a wonderful idea.

Firstly, a little bit about myself. I have cerebral palsy, also known, in short as CP. I am in a wheelchair as a result of this. What CP is stems from complications at birth. In simplistic terms, it's a brain bleed. I am what's known, in medical shorthand, as a "preemie". This is someone who was born prematurely. The normal period of time it takes for someone to go from the womb to Earth is 280 days or 40 weeks. I was born at 168 days. In weeks that's 24. For perspective, my birthday now is July 17, 1995. Had I been born at the correct time, my birthday would have roughly fallen on November 6.

I had a 5% chance of survival when I was born by emergency cesarian. To give you a visualisation of just how small I was, my father's wedding ring dangled on my wrist. I spent the first 3 months of my life in hospital in the neonatal intensive care unit. For more on what that is, see:

https://en.m.wikipedia.org/wiki/Neonatal_intensive_care_unit

That picture was much like I had to do. Anyway, I was diagnosed with cerebral palsy a bit later and had a Ventriculoperitoneal Shunt put in the left side of my head. If you would like to read more about that see this Healthline article:

http://www.healthline.com/health/ventriculoperitoneal-shunt

Despite this, and many other precautions taken, I was left with only one correctly working limb in my left arm. I cannot stand up or walk on my own, I need the assistance of others to help me do so. My right hand also doesn't work correctly as signals from my brain get scrambled on the way down and cause it not to do what I wish it to.

Here's an image of it:

rf7ZRI8.jpg

Anyway, the main reason I created this thread is to give you all an update on my health. This letter that I sent to @DarthDimi, @Dragonpol, and @0BradyM0Bondfanatic7 nicely sums up the current state of affairs:

I want to be honest: Yesterday I had a second seizure. Seizures could be the new normal for me. 28 May was the first one I have ever had. Out of the blue. I sincerely hope that's not the case but you never know.

Here's what I now know: It's very tough to diagnose why seizures happen. I do have a follow up with my neurologist regarding the seizure from 28 May coming up on 1 August. By that time, my blood work from this one will also be available.

We'll ask a few questions and hopefully have a few answers as well. For now, they told me to keep taking the medication. I actually missed a dose accidentally, so that may have contributed to the second one.

The good news is that seizures are not life threatening and I am not at risk of brain damage. Actually I have just learned that people diagnosed with cerebral palsy like me are at higher risk of a seizure. Why this has happened to me just now, instead of earlier in my life, I don't know. Just another speed bump I suppose.

I will be sure to let you know the results of my visit to the neurologist on 1 August. It's annoying as heck, yeah, but unfortunately all I can do is keep taking the pills. Rather big and bitter pills that I hate to take, but there you are! I'd much rather take pills than have another seizure. They're not fun, that's for sure. And of course, my poor parents. I can't imagine how they feel. They must be absolutely terrified.

The rub of the matter is that we don't know what causes them. That's the sad part.

Still, I am very thankful for what I DO have in life. It could be much, much worse. I think what I am most thankful for is that I am cognizant in mind. I know kids that have worse versions of CP than I. They can't talk and can't do much of anything really. This may sound a little bit rude, but they're almost like vegetables. They sure as hell can't have time alone. I am thankful for this forum too. Without it, i definitely wouldn't know all of you. I am happy, even though I don't know you in person, to call you friends.

Do not hesitate to ask any questions you may have about CP or anything else related to it. I like to think of myself as an ambassador for enlightenment, albeit on a very small scale, for the awareness of cerebral palsy. To have a 5% chance of survival and come through it with a sound mind is beyond amazing. Sometimes I have difficulties wrapping my head around the whole prospect. One of my strengths is positivity. Without it I may not be here today. In fact I'm so positive that I sometimes jokingly refer to myself as a cripple kid.

And of course, passions like Bond help pass the time too. Even though I never will live alone I hope to grow up and be successful in life, and I am determined to make it so.

Anyhow, you probably don't want to listen to me ramble on anymore.

I will keep you updated.

Yours in friendship,
Justin Anthony Litke
Maple Grove MN
USA


Lastly, feel free to friend me on Facebook. I'm the Aston Martin DB5 overlayed with the Union Flag, cause even though I'm American, I love the UK more! :)
«13456

Comments

  • edited July 2017 Posts: 5,622
    The story of your birth, survival, and perseverance toward a successful future is entirely amazing. And yes, thank goodness you are not only cognizant but very well spoken (written). You certainly have that going for you.

    Having passions in life is wonderful, especially when you have a community to share them with. We are indeed friends here even if we haven't met. I've been fortunate to meet a couple MI6-ers recently (one just last night!), but I already felt more than connected through our online discussions of Bond.

    Thank you for sharing about cerebral palsy. It's good to be enlightened about what others have been through and how they live their lives.

    (Also, I'm a native Minnesotan myself, born there but not raised. The Midwest flows through my veins ;) )
  • PropertyOfALadyPropertyOfALady Colders Federation CEO
    Posts: 3,533
    Really?! That's cool! Where do you live now?
  • The SF Bay Area. I've lived here for a long time. Made a lot of trips to the Midwest to see relatives when I was younger, but it's been a few years (family is more spread out now, grandparents have passed on, all that).
  • Posts: 3,135
    Hi Justin, read your excellent story. My 6 yr old daughter, Tiana has CP too! When diagnosed at birth, they informed us she would be in a wheelchair for life. She attented the Central Remedial Clinic and made great improvement! She now only needs the wheelchair as a support and early last year they made the decision that she would be capable of attending mainstream school. She just completed her first year in June and is doing really well. Tiana was to get botox injections in her legs, last month, however the relaxant the Doctors gave her took too long to work and she became very distressed so we had to abandon the procedure! We hope to try again later in the year!
  • ThunderfingerThunderfinger Digitalia
    Posts: 40,543
    You are a source of inspiration.

    Sorry for what your daughter is going through, Mathis. Maybe Justin has some valuable tips for you.
  • Posts: 3,135
    Cheers mate. Dont get me wrong, Tiana is doing really well and has a terrific sense of fun and humour! I only get to see her at weekends and she makes life wonderful!
  • ThunderfingerThunderfinger Digitalia
    Posts: 40,543
    That s great to hear.
  • PropertyOfALadyPropertyOfALady Colders Federation CEO
    Posts: 3,533
    Oh goodness! Me and her sound a lot alike, Mathis. I have to get Botox as well. Do they do it when she is awake? In my younger years, they injected me when I was awake. They wrapped my legs in saran wrap and a "numbing" cream that didn't work. It didn't help! God did that hurt! It felt like 10,000 knives were stabbing me all at once.

    Now they put me to sleep with Propofol.

    Here's who I do it through and what they do in depth.

    https://www.gillettechildrens.org/conditions-care/botulinum-toxin-and-phenol-injections
  • Posts: 3,135
    They put that numbing cream on her too. But she was given medazalom (sorry, think l spelt that wrong) which is just a relaxant! They just didnt give her enough time for it to work! When they tried to start she became very upset, so i made them stop! This was her first time to get them. They told me it may not even work for her!!
  • PropertyOfALadyPropertyOfALady Colders Federation CEO
    Posts: 3,533
    Please don't tell me they gave it to her orally. That stuff tastes like the worst stuff I have drank in my life!
  • Posts: 3,135
    Afraid so! And Tiana isn't great with meds at the best of times! And because she fasting she cudnt take anything to take away the taste!!
  • DarthDimiDarthDimi Behind you!Moderator
    Posts: 19,227
    I think it's courageous and good that you've shared your story with us, Justin. I myself am quite ignorant in the matter, or at least I was.

    You matter, friend.

    To you and @Mathis1 I say, there is hope. Let me hope with you both.

    I'm not on Facebook, Justin. But we can always talk. PM me when you want to.
  • Posts: 3,135
    Cheers for that!
  • PropertyOfALadyPropertyOfALady Colders Federation CEO
    Posts: 3,533
    Oh no! Will you send her my sympathies regarding the midazolam. Tell her when she gets old, if she doesn't care about needles, they can inject it intravenously.
  • Posts: 3,135
    Ok. Thanks for that Justin!
  • stagstag In the thick of it!
    Posts: 943
    My best regards to you both. I used to know someone with CP, he was one of the most self motivated people I have ever come across. I do know that he started his own small business as a market trader and had ambitions to eventually own a chain of shops. I lost touch with him but when I last had contact he was doing well on the markets. I have little reason to doubt that he has forged ahead since then and perhaps achieved what he set out to do.
  • edited July 2017 Posts: 1,644
    Great thread, I wish Justin all the best. Keep healthy. :)
  • BirdlesonBirdleson San Jose, CAModerator
    Posts: 30,344
    @PropertyOfALady some of us have real issues pal. I've developed quite the unsightly toe fungus, yet I carry that burden in silence.
  • RichardTheBruceRichardTheBruce I'm motivated by my Duty.
    Posts: 8,487
    Appreciate your grounded comments and the feedback you got, @PropertyOfALady.
    Your presence helps me go sane in a crazy world. Looking forward to your comments on BOND 25 when it exists.
  • PropertyOfALadyPropertyOfALady Colders Federation CEO
    Posts: 3,533
    Birdleson wrote: »
    @PropertyOfALady some of us have real issues pal. I've developed quite the unsightly toe fungus, yet I carry that burden in silence.

    :D
    Appreciate your grounded comments and the feedback you got, @PropertyOfALady.
    Your presence helps me go sane in a crazy world. Looking forward to your comments on BOND 25 when it exists.

    Oh don't worry. There'll be plenty of comments from me on that front.
    stag wrote: »
    My best regards to you both. I used to know someone with CP, he was one of the most self motivated people I have ever come across. I do know that he started his own small business as a market trader and had ambitions to eventually own a chain of shops. I lost touch with him but when I last had contact he was doing well on the markets. I have little reason to doubt that he has forged ahead since then and perhaps achieved what he set out to do.

    Well, that's inspiring.
    fanbond123 wrote: »
    Great thread, I wish Justin all the best. Keep healthy. :)

    Thank you all for your thoughts.

    I forgot to say that when I was born I weighed just 1.5 lbs. That's 0,68 kg to those of you who live in Europe.
  • DarthDimiDarthDimi Behind you!Moderator
    Posts: 19,227
    I've so far always known you as @PropertyOfALady, a valued member and good friend on the forum. And I really don't care about anything else, Justin. What mean to say is, you're not defined by any physical disabilities. What I know about you makes me like you.
  • Posts: 14,332
    Great strength and positivity very inspirational @PropertyOfALady, regarding your seizures from what you have said that is good news it's something I am very familiar with.
  • PropertyOfALadyPropertyOfALady Colders Federation CEO
    Posts: 3,533
    You get seizures as well @Fire_and_Ice_Returns? That's too bad. They're so scary.
  • Posts: 14,332
    You get seizures as well @Fire_and_Ice_Returns? That's too bad. They're so scary.

    Not myself I have supported people born with CP and Epilepsy also a friend has seizures that are not life threatening, over time it's something you can manage education and understanding is very important.
  • PropertyOfALadyPropertyOfALady Colders Federation CEO
    Posts: 3,533
    You get seizures as well @Fire_and_Ice_Returns? That's too bad. They're so scary.

    Not myself I have supported people born with CP and Epilepsy also a friend has seizures that are not life threatening, over time it's something you can manage education and understanding is very important.

    Are you a personal care attendant then?
  • Posts: 14,332
    I work in LD currently my role has great emphasis on enablement promoting choice and independence.
  • PropertyOfALadyPropertyOfALady Colders Federation CEO
    Posts: 3,533
    Ah. That's nice, but what is LD?
  • Posts: 14,332
    Sorry Learning Disabilities
  • PropertyOfALadyPropertyOfALady Colders Federation CEO
    Posts: 3,533
    An update for you all: I'm to have blood drawn tomorrow to check the levels of the Keppra.

    I, unfortunately, didn't really get any other answers. I may have an MRI done if my shunt is compatible. We'll see. I hope it is.
  • BirdlesonBirdleson San Jose, CAModerator
    Posts: 30,344
    Keep us posted.
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