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The Cerebral Palsy (CP) Thread
PropertyOfALady
Colders Federation CEO
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:
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! :)
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:
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! :)
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Comments
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 ;) )
Sorry for what your daughter is going through, Mathis. Maybe Justin has some valuable tips for you.
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
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.
Your presence helps me go sane in a crazy world. Looking forward to your comments on BOND 25 when it exists.
:D
Oh don't worry. There'll be plenty of comments from me on that front.
Well, that's inspiring.
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.
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?
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.