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C-PALSY  July 2002

C-PALSY July 2002

Subject:

Re: A new aging survey for the list

From:

Trisha Cummings <[log in to unmask]>

Reply-To:

St. John's University Cerebral Palsy List

Date:

Wed, 17 Jul 2002 08:32:18 -0400

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (189 lines)

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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