well, i do not think it is limited to professionals(it was, however, to give
us old geezers a site to point medical professionals to) , but, it would be
a very mature youngster that would be interested and probably someone who
denies having cp would not even look. i know that before i was told by the
ortho in 1993 that my old diagnosis of rheumatoid arthritis was definately
wrong and that i had tendonitis all over my body and likely it was caused
by the years of cp and complicated by my job, i would not have even thought
of looking for anyone with answers on the aging process. if i could have
stayed with that doctors care, i may not have looked since he at least had a
idea of what might be going on.
-----Original Message-----
From: Trisha Cummings [mailto:[log in to unmask]]
Sent: Wednesday, July 17, 2002 12:15 PM
To: [log in to unmask]
Subject: Re: A new aging survey for the list
Sorry Kyle,
Forgot this was for professionals only - thought maybe youngsters (
Amber, Jonathan maybe younger list members) might like to have an idea what
might be down the pike and how to avoid it. My Mistake.
Trisha
> -----Original Message-----
> From: Cleveland, Kyle E. [SMTP:[log in to unmask]]
> Sent: Wednesday, July 17, 2002 12:13 PM
> To: [log in to unmask]
> Subject: Re: A new aging survey for the list
>
> It's self-evident whether or not one has CP. If you don't know you have
> CP,
> what good would it do to look for a site that deals with "aging and CP".
> Guess common sense can sometimes be an oxymoron.
>
> Call it a bad day, but the original intent was to create a source-point
> for
> individuals looking for clinical info on the effects that CP has on the
> aging process. Had no idea that this silly little idea would create so
> much
> controversy.
>
> If this Jonathan is not a geezer, what possible interest could this info
> hold for him?
>
> Sorry, Kat, Bobby, Ken and all. I know I said I'd keep my yap shut, but
> sometimes something so inane comes down the pike that it has to be
> addressed. God! No wonder we have a dozen regulars and 300 lurkers.
>
> -----Original Message-----
> From: Trisha Cummings [mailto:[log in to unmask]]
> Sent: Wednesday, July 17, 2002 8:32 AM
> To: [log in to unmask]
> Subject: Re: A new aging survey for the list
>
>
> well Kat,
>
> Without further belaboring the digressions - my original point was to
> Kyle to perhaps consider that not everyone knows they have CP - due to a
> number of reasons and perhaps he can include these people - who will need
> helpful information just like diagnosed folks. I was a health care
> professional when I was younger and more able bodied, so perhaps the
> subtle
> differences are simply more familiar to me.
>
> If you call a rose a daisy - it doesn't make it so. Jonathan's parents
> have
> hampered his physical abilities thru their denial, and the school systems
> ability to help to him - ironically, since the teacher recognize there is
> a
> problem - they have consulted with the special PE teacher and the PDI's.
> Jonathan has been in our circle for awhile - execpt the man who fell over
> on
> me - I hardly ever accost strangers and ask what's wrong with them.
>
> Trisha
>
> > -----Original Message-----
> > From: Kathy Salkin [SMTP:[log in to unmask]]
> > Sent: Tuesday, July 16, 2002 5:32 PM
> > To: [log in to unmask]
> > Subject: Re: A new aging survey for the list
> >
> > Well, yes, I see all that, but we must remember that CP is a diagnosis,
> > just
> > as polio is a diagnosis, and so are muscular dystrophy, multiple
> > sclerosis,
> > menningitis and cerebral infarction, all of which can result in injury
> to
> > the
> > brain and spastic muscles. That's what I'm objecting to. Yes, CP is a
> > disability and so is polio and other conditions and side-effects of
> > illnesses
> > or conditions. But I don't think I have the knowledge or training to
> > distinguish CP from a stroke victim, or MS or MD.
> >
> > I have a great deal of respect for what others want to call themselves.
> > If
> > they prefer not to see themselves as disabled, that's their call, not
> > mine.
> > I'm not going to impose my thinking on them. If they wish to be in
> denial
> > that's their thing. Names have power, and I'm not going to unsurp
> anyone
> > of
> > their own power by labelling them something they don't wish to be
> > labelled.
> >
> > Kat
> >
> >
> > On Tue, 16 Jul 2002 17:12:17 -0400 Trisha Cummings <[log in to unmask]>
> > wrote:
> >
> > Hi Kat,
> >
> > It was the brain damage at birth part - that was the tip off.
> > I
> > did talk to the man for sometime and his girlfriend at length. Amber and
> > the
> > therapist think Jonathan is a Hemi - we could be wrong - but he looks
> > carbon
> > copy of Amber and as Amber says - no one holds their arm like that for
> > balance. Personally I don't care what you call it - its going to have
> > aging
> > similarities to CP.
> > Lots of people - especially older ones aren't comfortable with
> > disabilities and in the old days - the kids where hidden away - I
> remember
> > the little girl who sat behind me at the beginning of 1st grade - had
> some
> > problem - and they just took her away one day - and I would see her at
> her
> > house playing - I have no idea what was wrong with her - But I remember
> > her
> > to this day - and I wonder how has she fared with no education? Of
> course
> > that was the 50's - thankfully the majority of us have moved into the
> 00's
> > with some better ideas - but what about 30 years ago - 20 years ago?
> > Leaves
> > some room for some possible doubt - especially if like Jionathan's
> parents
> > you are macho male - who can't handle a disabled son. Who knows - he may
> > well only have a deformed knee and need to hold his arm under his chin
> for
> > balance( just like Amber) ( and therefore it has atrophied - just like
> > Amber's) - and therefore no be able to use his hand - he was born early
> > and
> > ill becasue his mother is diabetic - But I tend to think - his parents
> are
> > ashamed of the CP - they refused any help for him in school - so he has
> no
> > IEP - his parents frustrate the teachers who want to help him.
> >
> > Trisha
> >
> >
> > > Excuse me, but just how do you know someone has CP? I realise you see
> > > something like awkwardness in gait and spasticity and see CP, but
> there
> > > are
> > > other things going on you may not be aware of. I have CP but I don't
> > > assume
> > > someone else has just because he or she looks like they do. It could
> > have
> > > been a stroke or menningitis, or an isolated case of polio; you don't
> > > know.
> > >
> > > Kat
> > >
> > >
> > > On Tue, 16 Jul 2002 16:31:50 -0400 Trisha Cummings <[log in to unmask]>
> > > wrote:
> > >
> > > Kyle,
> > >
> > > I think your website is a great idea.
> > >
> > > Don't let the "little" folks get you down.
> > >
> > > One thing to think about is not everyone with CP knows they have CP
> -
> > I
> > > ran into a man in the McDonalds by my house - he was standing just
> like
> > > Amber and stubled and I grabbed him before he hit the floor - and he
> > said
> > > I
> > > am disabled - and I said yes I know - you have CP - he said no I have
> > > brain
> > > damage since I was a baby. and so on ( he is Hemi- like Amber). And
> > > Jonathan
> > > who goes to school with Amber (also a Hemi like Amber) - and he has a
> > bad
> > > knee - But Amber, and I and her special ed teacher know its CP. It
> think
> > > denial and perhaps like with Amber - rthey never said the word - I
> read
> > it
> > > in a book - leads people to not know they have CP - just that they are
> > > disabled. I was a premie, had braces and special shoes when I was
> little
> > -
> > > and to date still have this walk funny - right foot points out to the
> > > right
> > > at 45 degree angle, the attached knee angles off to the left, and the
> > hip
> > > joint pops so bad sometimes - it hurts and feels like its coming
> apart.
> > > Who
> > > knows what you call that - I call it darned awkward.
> > >
> > > Go for your website - when you change your name from Kyle Cleveland
> > to
> > > Cerebral Palsy Man - then maybe your are taking things to seriously -
> in
> > > the
> > > mean time you are doing a great thing to help others.
> > >
> > > Brightest Blessings - Trisha
> > >
> > >
> > >
> > >
> > > > Sign me up for the survey, Bobby.
> > > >
> > > > I met with an old friend for breakfast yesterday (old in the sense
> > that
> > > > we've known each other for a long time, but we still talk at least a
> > > > couple
> > > > times a week). I was telling him about the web page idea. Could
> not
> > > > believe his response. Something along the lines of, "Well, you
> know,
> > > you
> > > > have to be careful not to invest too much time into something like
> > this.
> > > > It
> > > > could take away from your family time. Also, I would hate to see
> you
> > > > start
> > > > taking your 'identity' from your disability."
> > > >
> > > > It's amazing how people are so quick to pour cold water on other's
> > > > excitement and so slow to encourage.
> > > >
> > > > -Kyle
> > > >
> > > > -----Original Message-----
> > > > From: BG Greer, PhD
> > > > To: [log in to unmask]
> > > > Sent: 7/5/02 12:20 AM
> > > > Subject: Re: A new aging survey for the list
> > > >
> > > > In a message dated 7/4/02 7:20:44 PM, [log in to unmask] writes:
> > > >
> > > > >I would, of course. And you might add "paraplegia" to the location
> > > > list.
> > > > >
> > > > >Kat
> > > >
> > > > I will be cantankerous and stick with diplegia. LOL Actually, I plan
> > to
> > > > reformat Carla's original 10 questions. I hope we get a better
> > response.
> > > > How
> > > > far along are you on the new web page?
> > > >
> > > > Bobby
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