Anee (and all)-
I agree that we have to make people realize that Cerebral Palsy doesn't
disappear once a kid with CP turns 13 years old.  Even on this list. . .
(I'm thinking back to a post from a mother who has a kid with Cerebral Palsy
who wanted to see her daughter playing hopscotch without her wheelchair).  I
have had people tell me that I could walk and get over CP later in my life
and as a result I have depression and a suicidal history.:(((


How does a person with Cerebral Palsy cope ?

Does CP usually get worse ?


Kathy




----- Original Message -----
From: Anee Stanford <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, October 29, 1999 6:32 PM
Subject: Aging with CP (was pain)


> Kyle (and all)-
>
> I totaly agree with the assement about cp...kids..money...and research my
> point is  that dosen't meen we don;t need to make people awear about these
> issues just the same--in fact awearness becomes even more important
because
> of the problems we are facing--the whole issue was virturaly ignored 10
years
> ago now it is starting to gain some momentum but more needs to be done.
Not
> just to do research but we need to make people awear of the problem .  It
is
> an issue that I try to bring attention too whenever I can...to make people
> relize that CP dosen't disappear when you turn 13 and that the issues
faced
> by parents and kids with CP are very diffrent than those faced by older
teens
> and adults with CP.  Not to offend any of the parents and/or kids on the
list
> of course you issues are important, but as adults with CP many more new
> issues arrize wich are more disabeling in my mind than the childhood
ones--at
> least the ones I faced in school--in some cases.  I am much less abel to
do
> things physically now than I was when I was a child and I am only 20. I
have
> also had tremedus problems starting in highschool with excessive fatigue
and
> lack of stamina and also arthritic pain.
>
> Parents, don't get me wrong I am not complaining I am just trying to
improve
> my coping ability as many of us are.  There are some "experts" on
childhood
> CP but ask some of them about aging and you get blank stairs most of the
> time...there are a few who are knolegable but they are alot fewer and alot
> farther between then when you are looking for a pediatric CP expert.  This
is
> something that is very frustriting...going to doctors and having all these
> complaints and geting either blank staris back or a responce like "it's
all
> in your mind" or "I don't know" or "I can't tell you".  This is one of the
> things that makes aging with CP all the more difficult to cope with at
least
> for me.  And to think that there are more than 500,000 people with CP a
good
> portion of who are over 20 and this is what we get when we go to the
doctor.
> I meen statisticly lets see UCPA estimates that 1 to 3 in every 1000
births
> will have CP.  If you use 18 years as a marker for adult hood a very large
> number of those 500,000 people with CP are adults...I would go so far as
to
> say that adults with CP outnumebr Kids with CP...but then the adults are
> compleetly ignored for the most part medicaly speeking because they don;t
> have "kid appeal"...it is just amazing to me.
>
> I was always told that CP dose not change over time...well that is true
> physiologly the lesions in the brain don't change...but in acualiy it is
in
> my case very false (as I have said many times befor over the last 6 years
on
> this list) because the symptoms of CP have worssened and secondary
> disabilities have developed and so you have to redevlop coping
> mechinisms--which is very very difficult when new aging symptoms keep
poping
> up at an ealier age then in the abel boddied.
>
> There has been a balfcon pump thred in the past few days wich I find
> extreemly intresting even though I do not have spastic CP...one person
finds
> it to work well for her and another finds altrenitive methods to be better
> for controlling her spasticity.  When answering questions I tend to be
warry
> of the pump as well as both of the "B" durgs (balfcon and botox) because
they
> have a lot of side efects and in some cases very bad side effects like
> excessive drowsieness but I understand on the other hand that for the
right
> person these durgs work very well.  My feeling is that you should first
try
> other methods and then try these drugs and last resort surgery--if there
is
> no other way and all elce has been tried-- but everyone is diffrent.  All
in
> all the point is the same...the goal is to cope with the symptoms of CP
and
> of CP and aging and rether that is through traditional, non-traditional,
or a
> combination of the two (like I use) it dosen;t matter.  It's what works
for
> you.  I think the combination of both western medicine and alternitive
> therpies is the key to managing and and coping with the CP aging process.
At
> the same time doctors and other health professionals as well as the public
> need to be made aware of the fact that CP dosen't go away just becasue you
> grow up and that there are some very diffrent and hard issues facing
adults
> with cp when compared to kids with CP or normal adults.  The point must be
> stated again and again kids with CP become ADULTS with CP.  Awearness is
the
> key!
>
> Talk about long winded...can you tell this is a BIG issue with me.
>
> Yours,
> Anee
> Webmaster, CPIC
> http://www.geocities.com/aneecp/CPIC.html
>
> In a message dated 10/29/1999 2:52:59 PM Central Daylight Time,
> [log in to unmask] writes:
>
> << Well, Anee, welcome to the "real world".  I think we've all said the
same
>  thing--especially those of us (me, Bobby, Ken, et. al.) who already are
>  older and are experiencing the accelerated aging effects.  Boils down to
>  this--the baby boom generation of CPers is the first to live "normal"
>  lifespans (in technologically advanced nations, of course).  The research
>  $$$
>  have traditionally gone to the kids because it made the most
sense--nobody
>  lived long enough to worry about "mature" adults.  Besides, seeing some
>  doe-eyed youngster's face on a billboard is going to tug at your
>  heartstrings a lot more than looking at my grizzled mug.
>
>  -Kyle >>
>