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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