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Dear Sonia:
Thank you very much indeed for your careful and thorough reporting. I have
a daydream that the fetal tissue transplant idea will come along "just in
time" to do my husband a world of good. Your commentary is an inspiration.
Many thanks!
k.
> We had our second meeting with Dr. Lieberman at
> the Neurosciences Institute in Los Angeles. This
> is a summary of what the evaluation was like.
>
> Dr. Lieberman requested that my father come to
> the meeting "off" Sinemet for at least 18 hours
> prior. Unfortunately (or fortunately, I'm not
> sure about this). He had an unusually good day
> and was not very slow at all. He was also in
> good spirits.
>
> Dr. Lieberman did a series of small tests on his
> range of motion, rigidity, balance, strength,
> etc. He had him tap his foot, turn to the left
> and right, put his hands on his shoulders and
> lean forward and backward... all the while giving
> my father a score of 1 to 5 on a sheet that has
> the separate movements listed. After this test,
> he gave my father a liquid mix of Sinemet (it
> looked like he crushed up the pills and mixed
> them in a blue liquid) that he said was simply a
> liquid form of what he already takes. We waited
> for the medicine to begin working (the first sign
> was the start of dyskinesias) and Dr. Lieberman
> repeated the same test, scoring my father on a
> new analysis sheet. He asked if this was a
> normal representation of the severity of his
> dyskinesias to which my father replied, "No, they
> get worse." Then he sent my father to walk
> around for about an hour, because apparently the
> Sinemet works better if you move around a bit.
> Plus it has a tendency to make my father sleepy
> if he just sits. My father responded very well
> to this particular dose of Sinemet, probably
> because he had not had any for 18 hours and it
> seemed to last longer than usual. It took about
> two and a half to three hours for him to go "off"
> and Dr. Lieberman repeated the same scored
> evaluation again.
>
> After scoring my father at four different
> intervals during the visit Dr. Lieberman said
> that his recommendation, at this time, would lean
> toward a pallidotomy and not a fetal tissue
> transplant mainly because of the severity of my
> father's dyskinesias. The dyskinesias seemed to
> concern him and he said that usually their are
> two kinds of dyskinesias, ones that happen more
> or less randomly while the patient is "on" and
> ones that happen most frequently when the patient
> is either going "on" or going"off". My father
> has the latter.
>
> Dr. Lieberman was not completely convinced yet
> which procedure would be most benificial so he
> has put my father on an alternate medication
> schedule for one month. He also said that for
> people with dyskinesia patterns similar to my
> father's, it is extremely important that
> medication be taken on time. My father has not
> been doing that and often experiments with his
> dosages, taking more or less depending on how he
> feels. Prior to our visit with Dr. L, he was
> taking his 1 3/4 carbidopa/levodopa 25/100 every
> four hours (more or less) and found that he was
> always going "off" before he took his next dose
> of med. Dr. Lieberman gave him a new schedule
> that will more or less prevent him from going
> "off" before his next dose. He did not increase
> the dosage, but split it so that my father is now
> taking Sinemet on a schedule as follows:
>
> 7:30am - 1 3/4
> 9:00am - 1
> 11:00am - 3/4
> 1:00pm - 1
> 3:00pm - 3/4
> 5:00pm - 1
> 7:00pm - 3/4
> 9:00pm - 1
> 11:00pm - 3/4
>
> Dr. Lieberman said that this particualar schedule
> would be a good indicator of how my father would
> react to a fetal tissue transplant. His area of
> cooncentration for this experiment is on how
> violent the dyskinesias are during this month.
> If they decrease in frequency and magnitude it is
> most likely they will decrease with a transplant,
> if they increase or remain at their current level
> that will most likely be the case in a transplant
> situation as well. So now we'll have to wait and
> see. Dr. L stressed that this is an experiment
> and that in his experience with the 40 or so
> Fetal Tissue Transplants they have done at the
> Neurociences Institute, they have found that
> pepole with severe dyskinesias before fetal
> tissue transplant have the same or an increase
> after the procedure. He did say, however, that
> other research groups have reported that
> dyskinesias decrease and didn't imply that either
> group was right or wrong , only that their
> findings in that area differed.
>
> So my father has been on this new med cycle since
> Sunday and the first two days he took the right
> dosages but not at their designated intervals.
> He had very bad dyskinesias and was extremely
> frustrated and disheartened. I gave him a gentle
> hand slap and told him to take the meds ON TIME
> (he's so stubborn!) or else the experiment would
> not work. Tuesday he took the meds exactly on
> time and had very few dyskinesias. I have made a
> spreadsheet for him to mark down when he takes
> his meds, when he eats, when he sleeps, when
> dyskinesias start and stop and how severe, when
> he goes on and when he goes off. I want to see
> if there is any pattern to be seen in his eating
> schedule or anything else. We'll see how it goes
> and we have another appointment with Dr. L in a
> month.
>
> Dr. L also advised him to eat small amounts of
> protein (which is widely known to interfere with
> Sinemet absorption) and in addition to save that
> protein for his dinner meal. He suggested a
> largely vegetarian diet (minus the protein from
> beans and some starches, etc.) for the daytime
> and told him to eat small meals (more frequently
> if necessary) because it takes longer for the
> Sinemet to begin working if you eat a sizeable
> meal.
>
> To sum up. As far as Dr. L is concerned, they
> are just skimming the surface of knowlege on
> Parkinson's and that his reccomendations are not
> THE word only an educated guess based on his
> experiences and the results of the experiments he
> has been involved in. He gave me no absolutes,
> which was as I expected but he was extremely
> attentive to my father and kept us there several
> hours until he was satisfied he had seen
> everything he needed to see at this time. I also
> requested some directions to published studies of
> Pallidotomy and Fetal Tissue Transplant and said
> he'd mail me some literature in the coming week.
> I'll let you know more about that when I get the
> articles.
>
> Thanks again for listening/reading. These get so
> long winded but there are alot of little details
> that could be important and as you may have
> discovered... Yes I am anal retentive (only in
> the cliched sense).
>
> Regards.
>
> Sonia ([log in to unmask])
>
>
======================================================================
Mrs. Karin M. Beros, MSO [log in to unmask]
International and Area Studies voice: (510) 642-8542
Office of the Dean, 260 Stephens Hall fax: (510) 642-9466
Mail Code 2300
======================================================================
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2000, Week 2 April 2000, Week 1 March 2000, Week 5 March 2000, Week 4 March 2000, Week 3 March 2000, Week 2 March 2000, Week 1 February 2000, Week 5 February 2000, Week 4 February 2000, Week 3 February 2000, Week 2 February 2000, Week 1 January 2000, Week 5 January 2000, Week 4 January 2000, Week 3 January 2000, Week 2 January 2000, Week 1 December 1999, Week 5 December 1999, Week 4 December 1999, Week 3 December 1999, Week 2 December 1999, Week 1 November 1999, Week 5 November 1999, Week 4 November 1999, Week 3 November 1999, Week 2 November 1999, Week 1 October 1999, Week 5 October 1999, Week 4 October 1999, Week 3 October 1999, Week 2 October 1999, Week 1 September 1999, Week 5 September 1999, Week 4 September 1999, Week 3 September 1999, Week 2 September 1999, Week 1 August 1999, Week 5 August 1999, Week 4 August 1999, Week 3 August 1999, Week 2 August 1999, Week 1 July 1999, Week 5 July 1999, Week 4 July 1999, Week 3 July 1999, Week 2 July 1999, Week 1 June 1999, Week 5 June 1999, Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 1998, Week 4 August 1998, Week 3 August 1998, Week 2 August 1998, Week 1 July 1998, Week 5 July 1998, Week 4 July 1998, Week 3 July 1998, Week 2 July 1998, Week 1 June 1998, Week 5 June 1998, Week 4 June 1998, Week 3 June 1998, Week 2 June 1998, Week 1 May 1998, Week 5 May 1998, Week 4 May 1998, Week 3 May 1998, Week 2 May 1998, Week 1 April 1998, Week 5 April 1998, Week 4 April 1998, Week 3 April 1998, Week 2 April 1998, Week 1 March 1998, Week 5 March 1998, Week 4 March 1998, Week 3 March 1998, Week 2 March 1998, Week 1 February 1998, Week 5 February 1998, Week 4 February 1998, Week 3 February 1998, Week 2 February 1998, Week 1 January 1998, Week 5 January 1998, Week 4 January 1998, Week 3 January 1998, Week 2 January 1998, Week 1 December 1997, Week 5 December 1997, Week 4 December 1997, Week 3 December 1997, Week 2 December 1997, Week 1 November 1997, Week 5 November 1997, Week 4 November 1997, Week 3 November 1997, Week 2 November 1997, Week 1 October 1997, Week 5 October 1997, Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 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 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, 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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