Print

---

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
======================================================================