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PARKINSN  March 2001, Week 2

PARKINSN March 2001, Week 2

Subject:

GREAT NEWS ON FETAL CELL IMPLANTS: lynda mckenzie's response plus

From:

janet paterson <[log in to unmask]>

Reply-To:

Parkinson's Information Exchange Network <[log in to unmask]>

Date:

Fri, 9 Mar 2001 05:13:16 -0500

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (146 lines)

cross-posted from MGH PD webforum:
http://neuro-mancer.mgh.harvard.edu/ubb/Forum71/HTML/003409.html

(please note this 'thread' of messages has been
heavily edited; the entire thread is over 90k in size!)

-----------------------------------------------------------------------
from mischef128 (Lynda McKenzie)
posted March 08, 2001 09:05 PM
-----------------------------------------------------------------------

So many posts in the past few hours. So much said that I thought had
been laid to rest. But I guess until we are cured, once and for all,
fetal tissue implants/stem cell implants will continue to cause
discussion, friendly, heated, intelligent and otherwise.

First of all, for those who aren’t aware of it, I was part of Dr.Freed’s
study. I was also one of the twenty who received the ‘fake’ operation the
first time, in December of 1996. Two years and two days later I received
the ‘real’ surgery. I believed with all my heart that this surgery would
be the answer to the Parkinson puzzle. So strong was this belief that
even after the first surgery I experienced improvement. Although no one
but the staff in the operating room knew who received which surgery until
a year post-op was reached, I felt such positive results that even my
neurologist at home was sure I had received the ‘right’ surgery.

After about six months I had to admit to myself that I wasn’t improving
and we had to wait the allotted time and go through the scheduled tests
during the one year post op time frame before we could be told which surgery
I had received.

Needless to say it was a great relief when the phone call came to tell
us that I had not received the tissue and that I was now eligible to
return to Denver to have the ‘right’ surgery. I still believed that
this surgery would be the answer for me. And I hoped that if not the
entire answer, I would receive some improvement and it would help
point researchers in the direction of a cure.

After my second surgery I felt better again. I was sure I felt positive
things happening inside me. I used positive imagery, thought positive
thoughts, kept active and creative and did my best to help those tiny
new cells inside my brain become acclimatized to their new neighbourhood.
However, after about a year, something happened and I felt myself
slipping. Tiny slips mind you, and sometimes followed by a step or two
forward, but in general I felt as though I was losing ground.

Last June my husband and I were in a car accident. Our car was totaled
and we were extremely lucky to have gotten away with just bruises (or so
we thought at the time). Now I know that something happened in that
accident that has affected my legs, and therefore my walking. And, more’s
the shame, my PD.

When people look at me now and hear that I was part of Dr. Freed’s study,
I can see them shake their heads, I can hear them cluck theit tongues as
they think “Hmmmm so that obviously was a waste of time,” and “I guess
they were barking up the wrong tree there,” and “those poor patients who
were given those promises and those false hopes.”

Wrong, wrong, wrong.

First of all, who knows what I or any other of the participants would
be like now had we not been part of the study?

Second – definitely NOT a waste of time….look how much we learned to
enable us to go on to subsequent studies.

Three – not barking up the wrong tree at all, maybe the answer lies
in the next forest over.

And as far as seeing the participants in the study as victims, or as
being used by the researchers, we all did it of our own free will. We
all believed we could be a part of the solution, instead of whining
about being part of the problem



IP: Logged

-----------------------------------------------------------------------
Bren (Brenda Tucker)
posted March 09, 2001 02:04 AM
-----------------------------------------------------------------------

Mischef, who I'm proud to call my friend, the courage and perseverance
you have lived since I've known you is an inspiration to me. You will
always be one of the leaders in this struggle.

Thanks for writing your story here...I think you should also put it in
your journal on the PLWP site. Once again, you're charging on.

Thank you Lynda...from one Parkie to another.



IP: Logged

-----------------------------------------------------------------------
janet313313 (Janet Paterson)
posted March 09, 2001 04:21 AM
-----------------------------------------------------------------------

my dear mischef,

what bren said, and double!

i'm sceptical of the timing of all the
sensationalizing in these 'latest' reports;
if anyone is entitled to 'sensationalize' the story,
it is you;
and sad to say for yellow journalism,
you choose to be consistently thoughtful and
balanced in your reports, not to mention courageous and
generous in your actions.

thank you.

janet


IP: Logged

-----------------------------------------------------------------------
aj (Ann Campbell)
posted March 09, 2001 04:22 AM
-----------------------------------------------------------------------

Mischef,

Thank you once for going through the trial itself and thank you twice
for telling us about it just at this time. I woke up this morning to
an email of sympathy at the loss of hope for a cure through stem cells.
It has been hard to rise above that today and your post helped immensely.

Thank you once for the post and twice, no, a million times over, for
participating in the trial, for putting yourself at risk so that we may
gain knowledge.



IP: Logged
-----------------------------------------------------------------------

janet paterson, an akinetic rigid subtype parkie
53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd
TEL: 613 256 8340 SMAIL: PO Box 171 Almonte Ontario K0A 1A0 Canada
EMAIL: [log in to unmask] URL: http://www.geocities.com/janet313/

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December 2000, Week 5
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December 1999, Week 5
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