Well, to me if I'd been labelled a CP all my life and suddenly my neuro
told me I had dystonia, I'd be rather confused, I'm sure. I did ask my
neuro about it a while back, and he told me it's an area of change in the
specialty. Paradigms are being shifted and the consequences are trickling
down (his words, not mine). However he did say, in the end it's all the
same, just that it's a matter of labelling, in his opinion.
Another disabled person (post-polio syndrome) and I were talking about this
re-labelling shift not too long ago, and it's his opinion that maybe parents
are wanting to get away from the CP label and latch onto something else that
seems less negative to them. Not sure I agree with this, as I don't see
anything negative about CP. But I'm a CP, and not an AB parent, and anyway
he sees things like this as more 'us vs. them' than I do.
----- Original Message -----
From: "Elizabeth H. Thiers" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, September 28, 2002 8:14 AM
Subject: Re: Fibromyalgia
> That's about my level of understanding. Usually, I've heard dystonia
> referred more to focal dystonia's. It's still new in it's usuage and
> used by everyone. In our area we are still mainly getting the traditional
> types of cerebral palsy diagnosis.
> Beth t.
> -----Original Message-----
> From: St. John's University Cerebral Palsy List
> [mailto:[log in to unmask]]On Behalf Of Kathy Salkin
> Sent: Friday, September 27, 2002 3:41 PM
> To: [log in to unmask]
> Subject: Re: Fibromyalgia
> As the site pointed out, dystonia is a relatively newly-recognised
> and so the etiology, etc., is still being researched and the parameters
> likely change over time. I've known people who develop dystonia secondary
> the affects of accidental injury (such as injury to the neck or spine),
> I've also heard some forms of CP rediagnosed as dystonia. Very confusing
> right now.
> On Fri, 27 Sep 2002 15:29:45 EDT "BG Greer, PhD" <[log in to unmask]>
> > Go to http://www.dystonia-foundation.org/
> > for a medical definition, but
> > is sounds a lot like other forms of CP to me.