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Hi Jacqueline,
I am going to a Support Group meeting in just a few minutes and your
post is exactly what I needed to counter the NY Times.....
Thank you very much for this timely post.
Best regards ......... murray
On 10 Mar 2001, at 11:29, Jacqueline Winterkorn, PhD, MD wrote:
> Friends-
> The news media have once again misinterpreted scientific data,
> sensationalizing the results of the fetal cell transplant study, with
> the NYTimes calling it a "failure," and "disastrous" while Reuters
> hailed it as a success. You should all try to read the full text of the
> study by Freed et al. published in the New England Journal of Medicine
> to see what the results really showed. [It is too long to attach to
> this post. I tried and it was rejected.]
>
> I have been quiet about the fetal cell transplant study up to this time
> because I am a subject in the study and I have been trying to be a fair
> and objective subject. But I want you all to know that it was not a
> disaster and a failure for me. I am one of the under-60 group who
> received the fetal tissue and showed significant improvement over 2-3
> years.
>
> The symptoms of PD are so dose-dependent and variable in any day that it
> is hard to demonstrate improvement owing to a surgical procedure. This
> controlled study showed patients under age 60 who received transplants
> improved significantly more while off their medicines than did similar
> patients who underwent sham surgery. When only the movement scores were
> compared, both older and younger patients who had transplants performed
> better than did patients who received no fetal cells. [That may not
> impress Gina Kolata of the NYTimes, but I'll bet she never woke up "off"
> and couldn't get out of bed and walk to the bathroom.]
>
> In my case, I have shown improvement in my walking, balance and speech.
> I wake up in the morning "On," without dyskinesia, feeling like my
> normal self for an hour or so. When I go off, I feel stiff, but I still
> can talk and walk and I neither shuffle nor freeze, as I did preop. I
> take about 1/3 the daily dose of Sinemet that I needed pre-operatively
> so my dyskinesias are less severe. I am working and being productive. I
> am enjoying a full life. I am not cured, but I have a new lease on life;
> the clock has been turned back 7 or 8 years. I definitely would do it
> again.
>
> More research is needed to find out why some few patients [up to 15% in
> this small study] developed intractable dyskinesias, why the over-60
> patients did not show significant improvement, and how best to control
> the size and location of transplants. But don't let the media toss out
> the very positive results of this study, which is still ongoing to
> determine long-term effects.
>
> Jacqueline Winterkorn, PhD, MD
> PD for 13 years
> 3 yrs s/p fetal cell surgery
*********
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February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 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Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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