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])