Created by and for people with physical disabilities.

Disability of the Month: Cerebral Palsy

Feb 24, 1999

This is an archival transcript of one of our past meetings. We don't have scheduled topical meetings anymore, but we're not opposed to the idea of bringing them back if someone is willing to commit to hosting them on a "long term" basis.

Participants already present:
  ChanServ ([email protected])
  Mooooooo ([email protected])
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Lonewolf: Daniel-where is Laura?
Mooooooo: she will be here momentarily
Lonewolf: ok we'll wait
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Lonewolf: there she is
WonderW: hi guys
Lonewolf: so you have already started it?
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Lonewolf: Hello everyone
Lonewolf: Tonight we have a guest speaker
Kark: hello
Lonewolf: Our own Wonder Woman
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WonderW: , tonight's meeting is on Cerebral Palsy, which is my disability
Lonewolf: I have responses to the questions from Lorraine Lavorata and from my son
WonderW: cool, that should help
Lonewolf: anyone that is a slow typer please add st to your nic
Lonewolf: for a statement type !
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Lonewolf: for a question type ?
Lonewolf: and WW will call on you
Lonewolf: any questions?
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WonderW: brb
WonderW: sorry
Lonewolf: ok Laura I'll turn it over to you
Lonewolf: oops
WonderW: really late attendant
Lonewolf: whwnever you are ready
Mooooooo: attendant was supposed to be there an hour ago
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wacky-ST: Then she doesnt attend to her job much does she?
WonderW: ok, sorry
Mooooooo: interviewing
wacky-ST: understand
Lonewolf: go ahead ww
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WonderW: anyway, CP is caused by damage to the brain before or during birth
WonderW: it is basically a lack of oxygen to the brain
atrpilot: were you born with it or did you get it at a later time? STa
wacky-ST: !
WonderW: I was born with it
WonderW: was born two and a half months prematueely
Kark: Do you know what's the most common reason for loss of oxygen to the unborn that causes CP
Lonewolf: ww wacky wants to say something
WonderW: the extent of the damage really depends on where in the brain the damage is
Lonewolf: kark please type ? and ww will call on you
Kark: oh sorry
WonderW: no one really knows, but it can be be caused by birth trauma, Rh negatove blood, or German measles in the mother
WonderW: during pregnancy
HelloKit: !
WonderW: Carly?
WonderW: Brian?
wacky-ST: it (CP) can be acquired at a later date b4 age 5 (i was 3mos old)tho rare it does happen...
camille3: ?
WonderW: true
WonderW: Camille?
HelloKit: just wanted to say the part about german measles is interesting... i hadn't heard that. it's also been known to cause some cases of amc
WonderW: hmm, I didn't know that either
camille3: does it only affect the brain
HelloKit: including mine, most likely
wacky-ST: ?
WonderW: but amc and CP are similae
WonderW: Beian?
wacky-ST: can I inject laura
wacky-ST: ?
WonderW: sure
wacky-ST: interject
WonderW: if you want, you can do the types of CP
Kark: ?
WonderW: which was my next point
WonderW: Karen?
wacky-ST: ok CP affect the motor cnter of the brain can manifest in speech balance and coordination as welll as othe physical areas cognitive skills rarely affected
Kark: how is AMC and CP similae
wacky-ST: i only know 3 types for sure
WonderW: AmC has joint contractures and stiffness, too
anny1: !
WonderW: anny?
anny1: amc and cp are similiar becouse amc can be caused by brain development problem
Kark: really
WonderW: good, thanks
anny1: it's what they told my cause was
anny1: ?
WonderW: my CP is the spastic type, which means that my legs, and to a lesser extent my arms become very stiff and tight
WonderW: anny?
anny1: does cp always involve spasicity?
WonderW: no
WonderW: athetosis is a type which means the muscles are always moving
WonderW: they rarely stop
wacky-ST: there are 4 basic types of CP these are: athetiod (loss of all control characterized by writhing movements) spastic ( laras meniotioned) ataxic (loss of internal balance) and mixed
wacky-ST: I am mixed
Lonewolf: cam did you get your question answered?
camille3: yes
WonderW: that's what ppl usually think of when they think spastic
wacky-ST: combine all four and u have me
WonderW: you are, Brian?
wacky-ST: yup u know that
WonderW: mixed means that a person can have two of the four types
wacky-ST: or more
WonderW: yes
wacky-ST: in any combo
camille3: ?
WonderW: ppl with ataxia can usually walk, but have trouble with balance
WonderW: camille?
camille3: are there meds you can take to help
WonderW: yes, but I've found that thru sometimes work for me and other times not
WonderW: they
Lonewolf: ?
HelloKit: ?
WonderW: Judi?
Lonewolf: Brian you said you developed yuours at 3 mo-from hat?
Lonewolf: what
wacky-ST: in my case I have no sense of balance that is not external, i have extermlely low muscle tone in upper extremities I am hypermobile, I have increased tone in lower makes my legs scissor when I stand or I can over evstend
wacky-ST: i was accidentally suffocated
wacky-ST: or anoxic
WonderW: I had scissor standing too
Lonewolf: IC
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WonderW: I had an operation at 4 to correct it
wacky-ST: but i can lock in an over exstension too lars
WonderW: Carly?
HelloKit: i have a friend w/ cp who doesn't have any spasticity or uncontrolled movements... she can walk but very bent over, knees bent, and weak - can't walk for long. would this be ataxia?
WonderW: possibly
wacky-ST: ataxia and athetitosis
wacky-ST: mix
WonderW: how's her balance?
HelloKit: hard to tell, never seen her walk for long
wacky-ST: if knees bent she possibly a diaplegic
wacky-ST: higher tone in legs
WonderW: we should discuss that too
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WonderW: CP can be in monoplegia, which is one limb affected, but rare
WonderW: hemiplegia is one side of the body
wacky-ST: no such thing as a CP para tho
Kark: ?
WonderW: quadriplegia, all four limbs
wacky-ST: or diaplegia
HelloKit: she also has cfids and fibromyalgia so hard to tell what goes w/ which
wacky-ST: mainly legs but hands and arms slightly affected but not noticed to untrained eye
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WonderW: diplegia is where the arms are much less affected than the legs usually
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wacky-ST: oh we fo got one lara
wacky-ST: dble hemi
WonderW: I've heard of spastic paraplegic CP, Brian
wacky-ST: where a person is afected on both side but arms more than legs
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WonderW: yeah, thanks
wacky-ST: miss nomer for diaplegia lara I herd it to and asked
WonderW: oh
WonderW: ok
wacky-ST: orthos use that term
wacky-ST: ortho pedist
WonderW: anyone have any ?
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Lonewolf: 1. Do you have regular contact with someone with Cerebral Palsy or another
Lonewolf: neurological condition offline?
Lonewolf: How has this impacted you?
wacky-ST: course im not as affected by cp now
wacky-ST: so i donno
Lonewolf: !
anny1: !
HelloKit: !
WonderW: Judi?
WonderW: Carly?
Lonewolf: My son has mild cp
WonderW: everyone?
Lonewolf: we went through a lot of tests and casts and special classes
WonderW: I'm spastic, just speak :)
wacky-ST: !
WonderW: so did I
Lonewolf: he says having cp has made him aggressive
WonderW: yes, Brian?
anny1: i had a good friend in school who has cp and is now a speech therapist
Lonewolf: because he was teased so much grrowing up
Mooooooo: I do!
Mooooooo: :o)
* Mooooooo has frequent regular contact with someone with
WonderW: :)
wacky-ST: i was told growing up to hide as much as i cld ( i cld freewalk I was shamed to think i was less than .... anyone esle share that?
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HelloKit: i of course have the friend i mentioned who unfortunately i don't have much contact with anymore since she's in seattle and i'm in ri... and since moving i now have chris' nephew zack who has cp caused by hydrocephalus
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WonderW: wow
Lonewolf: !
HelloKit: he's 6, as of yet nonverbal, nonwalking
WonderW: Judi?
Lonewolf: This is France and I have mild CP so here is my contribution:
Lonewolf: CP is not a disease, it is a condition. I am not sick or contagious,
Lonewolf: I just have impairments.
HelloKit: he's an angel, i love him
Lonewolf: that's lorraine's
confused: Hello
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WonderW: cool
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WonderW: ok, what are common stereotypes of ppl with CP?
Lonewolf: Yes, myself, I have mild CP and severe neurological
Lonewolf: impairments
Lonewolf: > How has this impacted you?It impaires visual/spatial/perceptual abilities, balance,
Lonewolf: motor skills/coordination and mobility
confused: I wonder if anyone sees this?
Lonewolf: excuse me
WonderW: np
Lonewolf: confused we are in a meeting
Lonewolf: to make a statement type !
WonderW: it impacts me that way too
Lonewolf: to ask a question type?
confused: I'm sorry I just didn't know if I made okay.
Lonewolf: no excess chat
wacky-ST: !
WonderW: Brian?
wacky-ST: i have no depth perception have to use cane in unfamiliar spots
wacky-ST: u know a white one
WonderW: yep :)
Lonewolf: !
WonderW: I have a hard time judging how far away or close things are
Lonewolf: Lorainne said That we are retarded, drunk or slobs. Well I am one of the most
Lonewolf: immaculate meticulous people you will meet and I also have an IQ of
Lonewolf: 148 and I am a college teacher and doctoral student
Lonewolf: ?
WonderW: way to go!
WonderW: France?
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wacky-ST: !
WonderW: Brian?
wacky-ST: ppl like to think i am forever 5
wacky-ST: i read at a 12 grade level at 9
confused: ?
WonderW: ppl do that with me too
wacky-ST: and have iq of 130 hows that for a mental defective?
WonderW: sometimes it's hard not to believe it
WonderW: confused?
WonderW: exactly
confused: Yes, I have a question.
WonderW: go ahead
confused: I am trying to do some research for a college class and I feel like I keep hitting a dead-end...
WonderW: on something related to CP?
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Lonewolf: ?
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WonderW: Judi?
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Lonewolf: I have never made the exact connection between cp and adhd
confused: on something related to disabilities in general..I want to know how ppl feel the Internet helps ppl with disabilities..or if they feel it helps at all.
Lonewolf: confused we are in a meeting you will have to come back later
WonderW: that would be better discussed when the meeting is over
wacky-ST: Ppl w/ CP are at a higher risk of Ld and behavior disorders
Lonewolf: but how so?
WonderW: I have a learning disability, too
WonderW: in math only
wacky-ST: now that one I cant answer
Lonewolf: Stuart did too and I never quite understood
confused: Lonewolf..this is not someone playing around..I understand that you are in a meeting..perhaps you would be kind enough to tell me who can help me with my search..I too am disabled and want to know the answer
wacky-ST: i am dyslexic and adhd
WonderW: I think it just depends on the part of the brain affected
Lonewolf: after the meting confused
Lonewolf: IC
wacky-ST: yep lara
Lonewolf: were you oth aggressive?
Lonewolf: b
WonderW: we're no
WonderW: no
wacky-ST: i am but that i think was cuz i had an older sib
Lonewolf: thanks
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wacky-ST: that like to say: you cant do this cuz ur... (whatever her reason was)
wacky-ST: good motovator
WonderW: let's jimp to the question on that Do you think that ppl with CP are more or less likely to be assertive/aggressive?
WonderW: and why
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Lonewolf: !
wacky-ST: !
WonderW: Judi?
Lonewolf: Lorraine-to some degree. People with neurological disabilities are the most
Lonewolf: discriminated against especially in employment and have the highest
Lonewolf: unemployment rate so lose assertiveness. I am only able to teach
Lonewolf: college (not a steady income till I complete my doctorate). Most
Lonewolf: neurologically disabled people like me need mobility assistance,
Lonewolf: assistance with problem solving and judgment, motor skills and
Lonewolf: perceptual skills and thus many employers fire them and refuse to
Lonewolf: accommodate them. In college t
Lonewolf: In college teaching these problems do not arise for
Lonewolf: me, but in all other work they do.
WonderW: that's really true
WonderW: I've found that my perceptual difficulties sometimes cause me to stare ahead
Lonewolf: !
WonderW: and ppl think I'm unaware
WonderW: Judi?
Lonewolf: Stuart's adult response has been to become an aggressive businessman
Lonewolf: as if compensating
WonderW: do you think that might be because he got tired of not being heard?
wacky-ST: i think the asserstion argressive depends on the enviroment one is face with wheter coddled or taugh independence and whether they are allowed to the oppertunity to fail
WonderW: or is it innate, or both?
Lonewolf: not sure
WonderW: I totally agree there, but I think it's also individual response
wacky-ST: i have a story if u can wait its a good example
WonderW: so a mix, as usual
WonderW: ok
Lonewolf: bri?
WonderW: hmmmm
wacky-ST: I was abt 2, my older sis was on the couch watching sat morn cartoons and I wanted up too, try try try as i did I kept falling of the couch couldnt get up there, my dad saw and placed me up there I screamed the only word i cld say that ppl understood NO. got down and kept trying he helped a few more x's but after my continue defiance he gave up and left me a lone. 2 hours later covered in sweat, cartoons over, and much to my si
wacky-ST: sorry for the typos
WonderW: cool, Brian
WonderW: good story, I like it
wacky-ST: been like that my whole life
WonderW: I know :)
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WonderW: ok, I have another ?
wacky-ST: why I became a counselor I wanted to be the one helping for a switch
wacky-ST: i gotta jet
WonderW: which is What basis do the stereotypes surrounding CP have in fact, and how can we reduce them?
WonderW: ok
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WonderW: we're alm,ost through anyway
WonderW: thanks, Bri
Lonewolf: !
Lonewolf: Lorraine-education and seminars and listservs
WonderW: agreed
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Lonewolf: ?
WonderW: I think that ppl tend to think we're retarded because of the visual-spatial perception thing
Lonewolf: !
WonderW: which is often affected
WonderW: yes?
WonderW: go ahead
Lonewolf: I agree wholeheartdly
Lonewolf: can we go on to the last ?
WonderW: like, if I run into walls or am unable to judge distances, or stare, ppl don't understand
WonderW: yes, it is What is the value of of conventional versus alternative treatments?
Lonewolf: For CP treatment depends on the person and the severity. For me I
Lonewolf: only eye surgery (CP caused ocular motor problem where I was born
Lonewolf: with crossed eyes and now have perceptual/depth perception and
Lonewolf: spatial deficits). I also have had physical therapy. I feel
Lonewolf: alternative therapies are always better. Surgery generally is not
Lonewolf: helpful.
Lonewolf: Special education just limits the student's potential and limits
Lonewolf: access to math and science and lowers standard so student later on
Lonewolf: has less access to college and go
WonderW: and Special versus regular ed
WonderW: true
Lonewolf: !
WonderW: however, I loved Special Ed, but I think the transition needs to be smoother
WonderW: go ahead
Lonewolf: Special ed sure helped my son
Lonewolf: he would never had made it through school without it
Lonewolf: but he was mainstreamed after a year
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WonderW: there was a point after which it limited me, but I never would have made it through math without it
WonderW: wb Brian
wacky-ST: hi
Lonewolf: Is that all WW?
WonderW: question is what is value of special versus regular ed?
WonderW: any more to say?
WonderW: yes, if no one wants to add
Lonewolf: Thank you Laura that was very interesting
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Lonewolf: Thanks everyone for coming
WonderW: you're welcome
wacky-ST: yup
WonderW: sorry it went over a little
Lonewolf: its ok
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Lonewolf: it was interesting
WonderW: good
WonderW: :)
Lonewolf: stuart wasn't dignosed until he was 5
wacky: I was 2
WonderW: wow
wacky: when my parents were told docs knew at 6 mos
Lonewolf: he kept walking on his toes, stuttering couldn't ride a bike etc
WonderW: I was 18 months, would have been sooner but doctors afraid of malpractice
Lonewolf: what actually happened?
wacky: with whom
Lonewolf: WW
WonderW: my mom was pushed into a jewelry counter
Lonewolf: oh no
wacky: she was in her invisible plane........
WonderW: by guys who were robbing the store
WonderW: lol
WonderW: and fell out
Lonewolf: that's aful Laura
Lonewolf: so sorry
wacky: so u wer a pre birth?
WonderW: yep
WonderW: 6 and a half months
Lonewolf: Stuart was full term
Lonewolf: difficult delivery
WonderW: am surprised I am not more involved
Lonewolf: no kidding
Lonewolf: I'm going over to the main room
WonderW: my speech was slightly affected, but mostly with breath control
WonderW: ok
wacky: I was born 9 wks pre before infant respirators
WonderW: oh man
WonderW: that sucks
Lonewolf: oh my
WonderW: I should go rest, guys
WonderW: am spasming a little from the typing/trying to focis
WonderW: I think next time if I do this, we should abolish ? and !
WonderW: makes it harder
WonderW: have to type name first
WonderW: see you soon
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IrishGen: Hello
IrishGen: what is going on ?
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wacky: wieght 3 lbs 3 oz at 16 in
Lonewolf: when the doc told me cp for stuart I just bawled