Print

Print


Jacob...

GDNF research and testing is being done by Amgen Labs.   I called Amgen's head
office (which happens ot be near my home) the moment I heard about human
trials being started with this drug.  Here's what I got (and it's very
little.. AND I seriously doubt your neuro knows even this much).

There are 50 persons in various unspecified locations around the USA, having
PD, who're being tested with GDNF.  These test locations will not be made
public because Amgen is afraid (and probably rightly so) that they will be
SWAMPED by calls from desperate Parkies eager to get ahold of that drug.

The drug cannont pass the brain barrier so it gets to the brain via a surgical
procedure much like, if not exactly like a pallidotomy.  In fact, I'm GUESSING
(and this is ONLY a guess, based upon my conversation with the Amgen MD with
whom I spoke that one time), that those 50 who are the test subjects have had
pallidotomies in the past, and Amgen is using the original pallidotomy site as
an entryway into the brain for GDNF <---- JUST A GUESS, PEOPLE, NOT GOSPEL!!)

For what it's worth, the Amgen head office's phone number is (805) 447-1000.
Keep in mind that while they ARE very gracious (and they truly were... it was
nice dealing with them) <but OH-so-frustrating not to get ANSWERS!!!> that
they are also VERY closed mouth about this drug and any procedues related to
it.

Finally, Jacob... I think this is the one, safe place where you CAN vent..
complain, whine, SCREEEEEEEEEAM, or otherwise let it all out about how
miserable you feel due to the PD, and what it's done to your life.  If any
individual or any group can understand, empathize, and know EXACTLY what your
body may be going thru, as well as your mind, it's THIS one!

So, m'friend... don't apologize for being eager to be rid of the PD, or to
desire wanting a "normal life," or for being open ot us about that, 'cause ya
know, m'dear... there's not a single one of us that isn't wishing for the very
same thing!

And the sooner the better!! <smile>

Barb Mallut,
[log in to unmask]





----------
From:   PARKINSN: Parkinson's Disease - Information Exchange Network on behalf
of Jacob Drollinger
Sent:   Saturday, August 31, 1996 9:41 AM
To:     Multiple recipients of list PARKINSN
Subject:        information?

My neurologist keeps dancing around the issue of GDNF. As I have stated
before, I believe, due to the static nature of my illness, I really think
that this treatment may be the miracle I have been waiting for- for the past
eight years. Yet, she feels she must keep any information regarding this from
me.
Am I being paranoid?
I know that perhaps she doesn't want to get my hopes up, but if I have
anything to hope for it is this. I wan't so much to go back to the way I was
before, you have no idea. I was just eighteen years old when I was poisoned,
and I had just begun to live. I am not saying that anyone else's P.D. is less
important than mine, because we all have to suffer through the same things.
But most P.Ders have lived a great deal longer than I had before the onset.
And maybe it is insensitive, but you know what, I think I have that right
now.
I am being a crybaby, but no one seems to want to help me.

Jacob