even many neurologist don't know how to handle cp.
yes, it is experience. some places have good motion
disorder clinics. i go to the Emory university
hospital's motion disorder clinic. maybe a university
medical center near you would have something like
that. it is not only for cp. they could possibly
dianose you even if not cp. 

--- Kendall David Corbett <[log in to unmask]> wrote:

> Mary Katherine,
>  
> 
> 		Janet says:
> 		 
> 		The balance and coordination issues sound a lot
> like CP, and even if it's not CP, you're dealing
> with the same issues. When I was in my early 30's,
> my functional abilities started to decrease, so
> walking got harder, the range of motion in my arms
> decreased, and in general my muscles were stiffer
> (or tighter).  So I went to my Doc, and got an
> increase in my medication and in the course of 10
> years, I got a walker, a new (to me) drug, a
> neurologist, a baclofen pump, and a really good
> massage therapist/body work practitioner.  Ask
> anybody on the list, asnd they'll tell you that
> aging makes CP harder to live with, even at ages
> that aren't generally considered to be "aging." 
> 		
> 		 
> 		I also found that "regular" PT wasn't that
> effective.  It was only after I got the baclofen
> pump that I found out what stretching was supposed
> to be like.  Now I can stretch and have it make a
> difference, in that my muscles won't immediately go
> back to the "pre-stretch" state; the same thing goes
> for massages.  It seems that "regular" orthopedic
> docs don't quite know what to do with people with
> CP, yes it's odd, very odd but I think it has to do
> with experience.  They're used to dealing with
> relatively straightforward problems, and CP is
> complex, especially as we age.  
> 		 
> 		You might try seeing a neurologist, as sometimes
> muscle stiffness has a neurological basis.  You
> would hopefully get a good work-up, and perhaps a
> prescription for a muscle relaxant.  I know that if
> I didn't have good pharmaceuticals, I would be
> curled up in a ball so tight that it would take a
> crowbar to straighten me out.
> 		 
> 		Congratulations on finding a practitioner who can
> help you - that's half the battle.  Good luck with
> your quest to find more answers.
> 		
> 
> 		Janet (and Kendall) Corbett 
> 
> 
> ________________________________
> 
> From: Mary Katherine Powers
> [mailto:[log in to unmask]]
> Sent: Fri 9/1/2006 6:19 PM
> To: [log in to unmask]
> Subject: [C-PALSY] I'm new here - muscle stiffness
> 
> 
> 
> Hello,
> 
> I hope you don't mind my being on this list.  I'm
> new.  I do not have
> CP, but I have issues with chronic muscle stiffness
> that cause pain and
> make movement difficult.  I'm doing physical therapy
> for it.  I was
> hoping to get some suggestions on dealing with
> muscle stiffness that
> might help.
> 
> what I can do is limited, so the stretches have to
> be really gentle. 
> I've tried doing stretches too hard and had a lot of
> trouble moving
> after that.  I've been told to take it easy and
> build up slowly.
> 
> I have chronic pain in my legs, back, neck,
> shoulders, arms, and
> occasionally fingers.  I'm overweight and I've been
> told that although
> that does not help, it's not the cause of the
> problem.  I was told I
> was out of shape because people much more overweight
> than I am have
> more mobility.  I agree with this, but my muscles
> have always been
> stiff.  It's just the way I am.
> 
> I can walk but it is difficult.  I'm hoping the PT
> will make it easier.
> 
> Also, I was a preemie (11 weeks early) and I have
> the typical balance,
> coordination, etc. problems.  my vision is not great
> and I have no
> depth perception.  that really is not the problem
> though, it's the
> muscle stiffness that gets to me.
> 
> any suggestions on dealing with muscle stiffness
> would be appreciated. 
> when I tried googling it, all kinds of information
> on all kinds of
> different conditions, like Parkinson's, came up,
> none of which I have.
> 
> another strange thing, and I was wondering if anyone
> could comment, is
> that I've had no luck going to "regular" PTs who
> were recommended by my
> doctors.  they are at places like "sports and
> spinal" and some other
> group, and they tend to be very cursory, don't
> understand what I'm
> talking about, and then circle a couple stretches on
> a piece of paper
> and tell me to do them, and usually I can't do the
> stretches they want.
>   It's weird.  I went to someone today at a place
> called Pain and
> Rehabilitation Medicine and I spent $250.00 for an
> appoinment that
> lasted about an hour.  It was like night and day -
> he was excellent. 
> he does not take insurance and still he has a
> waiting list about 2
> months long.
> 
> Any experiences like that, where the "regular" PT
> places recommended by
> doctors just don't work?  I find that odd, like they
> should know a bit
> more about what they are doing.
> 
> thanks,
> 
> Mary Katherine
>
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