C-PALSY Archives

Cerebral Palsy List

C-PALSY@LISTSERV.ICORS.ORG

Options: Use Forum View

Use Monospaced Font
Show Text Part by Default
Show All Mail Headers

Message: [<< First] [< Prev] [Next >] [Last >>]
Topic: [<< First] [< Prev] [Next >] [Last >>]
Author: [<< First] [< Prev] [Next >] [Last >>]

Print Reply
Subject:
From:
Dina Dror <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Fri, 29 Oct 1999 02:25:09 EDT
Content-Type:
text/plain
Parts/Attachments:
text/plain (51 lines)
Bob,

You mentioned something very important in your original post about the oral
version of Baclofen: That it made you more spastic... I highly doubt that the
pump would be good for you because it may do the same thing. I have read a
couple of posts where that happened to people and they had to have it removed.

Personally, EEG biofeedback along with therapeutic horseback riding, Rolfing,
NACD and etc. would be a much better way to go than Baclofen for the long
term.  A lot of people have mentioned problems with leakage, infections,
increased spasticity or weakness in muscles that they weren't expecting to
have problems with.

Think about it this way: What if you had it implanted and then: You became
tolerant to it and had to have it removed. Then what? You would lose all of
"your gains" from it.

Or if you have a lot of problems with leakage and infections: You'd have to
have it removed.... again leaving you back at square one where you started or
worse off.

Are you willing to go through this procedure over and over again when you
need the tubing or pump replaced for one reason or another?

Think about the long-term picture, not just the short-term stuff. I don't
have the pain in my joints that I used to because I found out that it was
being caused by food allergies like wheat and milk. When I overdo it on foods
like wheat, the pain does come back, but a lot less severe than before. It's
just a warning to me to stay away from that stuff. :-))

Flexibility and range of motion: I am gaining more and more of this all the
time from the Rolfing, therapeutic horseback riding and this week, I have
been having an INCREDIBLE time with the EEG biofeedback. I am feeling so much
looser. My riding instructor commented on it a couple of days ago. I was
doing things on the horse that are normally much more difficult to do like
2-point which is going from sitting to standing on the horse, and doing it
pretty easily. I was doing post-sit trotting and trotting. I can trot pretty
well, but I can't always get into the post-sit trot.  I am now working on
changing my gait pattern because the EEG biofeedback helps me to be more
aware of which muscles are being used and when and how.

I showed two people how I am trying to change my gait. They were IMPRESSED!!!
My Rolfer is so pleased at the progress that I have been making over the past
3 years since I started riding. She has known me for over 20 years!!!

This is non-invasive, fun and painless.

Just my .02 cents worth of experience,

Dina

ATOM RSS1 RSS2