Pallidotomy in the Treatment of Parkinson's Disease
 
I would like to give some sort of meaning to what was seen on Prime Time
Live.  I underwent a right pallidotomy in May of 1993 in Stockholm, Sweden
under Dr. Lauri Laitinen.  I have also been in the operation room while Dr.
Robert Iacono performed two pallidotomies as his guest.  I have been in Dr.
Iacono's home as his guest and had an extensive conversation with him.  I
have attended a presentation by Dr. Iacono plus looked at one or two video
tapes made at other presentations.  Dr. Lauri Laitinen spoke to YPSN in
February of 1993 and again in April of 1994, both times as my guest as
president of YPSN.  In April of 1994 Dr. Laitinen was at our meeting all day
and attended sessions on care giving and Tia Chi.  I was part of a team that
interviewed Dr. Gary Heit, neurosurgeon of Stanford University.  I have been
very visible to the medical and patient community regarding Parkinson's
disease.  I say visible because I have been critical of the medical, patient,
care giver and national organization groups that make up the community.  Over
the last two years I have talked to about 150 patients either thinking about
surgery or having already had the surgery.  I have a BS in Econometrics and
an MS in Management Science.  I detest Parkinson's decease for what it has
taken away from me.  I had my first symptoms of PD around my 37th year on
this planet, but was not diagnosed until I was 44 in 1984.  Things were bad
by that time.
 
I have always thought of the medical profession as occupying the top of one
of the white pillars in the town square.  I never truly understood what they
did, the rules of conduct under which they practiced their profession and the
often blind faith shown by the patient community when using medical services.
 I have always preferred to go to a dentist over all other doctors.  I can
not tell the dentist what is wrong, he has to find that himself.  I do not
make small talk with him in my mouth poking around.  When my mouth is open
that wide and someone is bussing with a drill, I FALL ASLEEP.  The next thing
I remember is waking up with my teeth clean, holes filled and a "You come
back to see me in six months, now."  I really feel something happened and I
am the better for it.  My teeth feel so squeaky clean I want to do one of
those all-teeth smiles for the TV audience.  The feeling is almost as good as
when I take my white 1985 Cadillac Elderado to the car wash and they wash and
wax it inside out.  It has 150,000 miles on it with gold trim and a red leathe
r interior, I am all stud driving that car out of the car wash.  If I should
have just come from the dentist, there is nothing holding that car and me to
the road as I show my big smile to everyone who sees me.  So, those are my
qualifications, pedigree and all.  Oh, by the way, my pallidotomy was not
100% successful.
 
Prime Time Live
 
You saw at the beginning of the segment patients with debilitating
Parkinson's disease.  These patients were frozen, had excruciating dyskinesia
(uncontrolled movement of head, arms, legs), festination (short steps), masked
 faces, and so on.  If you thought Parkinson's disease was taking a few pills
and all would be right, you are wrong.  It is possible for many to reach the
stage of PD shown in this TV segment.  When you go to support meetings often
patients this bad are not present.  They either prefer not to go out or can't
go out.  I also know of a lady who has taken one small Sinemet pill daily for
15 years.  That is all she needs.  Does she have PD?  That is not for me to
judge.  PD is manifested differently in each person it touches.
 
If your parents or you are suffering the human indignity shown by these
people, you will understand Ed's statement that he would be happy if only the
shaking in his arm went away.  This brings up another point.  Ed is shown in
extreme dyskinesia in a home movie clip, then he is walking into the hospital
looking near normal.  He is then shown with a very jerky head (dyskinesia
again).  On the operating table he was shaking and finally he is dancing down
the hall looking like new.  You just saw what PD does to people.  I could be
sweating one minute, normal the next and be throwing my arms around the next
minute.  I could actually have tremor in my legs and dyskinesia in my arms at
the same time.  The one thing I could not do is go to a restaurant.  I would
either go OFF medication and find movement so slow and difficult that my wife
would be feeding me.  Five minutes later I would be eating normally.  Five
minutes later I had so much dyskinesia (motion) that food would spread its
wings and fly to other plates, laps, tables and maybe the ceiling or wall.
 What you saw in Ed was his many manifestations of PD.  On the operating
table he was shaking because he was OFF medications and lying at rest on the
table.  For those of you afraid to go OFF medications for a short period, it
is not that bad.  There is an initial period where you will shake uncontrollab
ly, but then things settle down and rigidity and bradykinesia take over.  It
may be very painful, so don't do it just to find out.
 
Touch the Brain, Never the Same
 
There is a placebo effect when ever your brain is touched.  If Dr. Iacono had
done nothing, it is possible that Ed could have at least walked back to the
recovery room looking reasonable.  When I arrived in the OR I was a Mexican
Jumping Bean.  I do not think there was a muscle that was not pulling me one
way or the other.  I had gone off meds at 10 PM the night before and my
surgery was at 2:00 PM.  I think that says I was off meds for 16 hours before
surgery.  I was given two shots, one was for my heart (???) and one was a
small sedative that reduced my anxiety.  During the surgery I talked with Dr.
Laitinen and even cracked a 'funny', if I recall correctly.  I do remember
his checking for flashing lights during the stimulation phase.  This is to be
sure the tip of the probe is not in the optic track.  He than asked me to
bicycle with my left leg.  I could not get my left leg off the table.  The
leg felt like it weight was about 1000 pounds and nailed to the table.  He
told me to rest and then he said try it now.  My leg went up with out
resistance.  It was like it was normal.  I was so surprised.  I was getting
excited.  He than asked me to hold my left arm up and do the OK sign.  I
could get my arm up, but I could not get my thumb and forefinger to touch. He
again said to relax.  And than requested I try it again.  My arm went up
without resistance.  I could twist it and turn it, open and close the hand,
make OK signs at will.  I had been released from the HELL OF PARKINSON'S.   I
wanted to run screaming loudly about my new-found freedom.  Then I thought
maybe I was dreaming.  If I don't tell anyone, I will not be a fool when I
wake up.
 
When I returned to the room, I was given something to eat.  I then sat at the
small table in the hospital room and started to play cards with my wife, her
mother and sister.  I think I was wining when Dr. Laitinen enter the room and
said I should rest.  This was Thursday afternoon.  Friday morning I did some
testing and I was back at the hotel by Friday noon.  I rested in the
afternoon and that evening we all went out to eat at the Stockholm Hard Rock
Cafe.  Saturday, Sunday, Monday and Tuesday we did sightseeing in Stockholm.
 We returned to California on Wednesday.  I have not been the same since.
 
Brain Healing
 
Over the next few weeks little symptoms would reappear.  I was very
frightened that everything would come back.  My fear was that this had been
only a tease of normality and I was just  given a taste of what it was like
years earlier.  Eventually the brain healed (about 13 weeks for me) and some
of the rigidity did return to my arm.   The benefits for me have been:
... I do not sweat uncontrollably
... I do not have dyskinesia without really trying.
... My left leg is almost rigidity free and is better than my right leg.
... My left arm still has some painful rigidity, but this can be controlled
by medications.
... My face has expression and I have a happy walk.
On the down side
... I have PD on the right side and with the left side better, the right side
feels much worse
... I have not changed my medications significantly
      1993: 42 mg of L-dopa, 6.5 mg of carbidopa per hour
                0.104 mg of Permax per hour.
               This is about 676 mg of L-dopa,  104 mg of carbidopa and
                  1.6 mg of Permax daily plus a 25 / 100 to get started in
                   the morning.  I also used two Eldepryl daily plus a 10 mg
                  Elavil in the evening for sleep.
       1995:  48 mg of L-dopa, 7.5 mg of carbidopa per hour
                  0.12 mg of Permax per hour.
                 This is about 768 mg of L-dopa, 123 mg of carbidopa and
                    1.92 mg of Permax daily plus a 25/100 to get started in
                    the morning.  I also use one Eldepryl daily plus a 20 mg
Paxil
      (If this sounds strange, I am on duodenal infusion.  I pump liquid
Sinemet directly into my small intestine.  This is another subject for
another day.)
...  My insurance paid for my surgery in Sweden, they also paid the airfare
for my wife and me at the request of the company.  The insurance program was
company self-insured with Atena administration of the plan.
...  In July of 1993, only two months later, I was part of a down-sizing of
the company in which they offered me $50,000 to terminate and give up all
rights to any benefit claims.  I ask to go on company disability.  I
qualified for this which pays me $50,000 a year plus health insurance until
age 65.  That was 12 years away.  I think I made the right move.  I do not
consider myself employable, even after the pallidotomy.
...  I also have asthma
 
 Ed will be going through this recovery period and it may or may not be scary
for him.  He will need a lot of rest as the brain heals.  The healing process
is not well understood.  I think the lesion contracts and then expands.
 During this time he may experience some of the symptoms he thought he left
on the OR table.  Some may stay and some may only reappear for a brief
period.  But from what I saw on the segment, I believe he will get
substantial relief  from the symptoms of PD.  Don't forget his expectations
were just relief from an OFF medication shaking.
 
When one of these segments is filmed, edited and shown all in the same day,
there is no time to ask the participants to approve the content used on the
air.  I was a little upset with the word 'asymptomatic' by Dr. Iacono, but I
was more surprised they let the reporter repeat himself in the same sentence
(it made him appear a little unsure of his question).  All in all, I felt the
segment was informative, high in hype and about 98% truthful.  That is more
than I can say for some reports.
 
The jury is still out for Ed.  Over time he will learn all about his new
found freedom.  In the end he will be better off, his wife will get the man
she married back and his sons will get a dad back.  And that is what it is
all about.  Ed still has progressive, degenerative Parkinson's disease.  It
will get worse.
 
I do not consider this surgery experimental.  I would prefer to use the words
'cautious optimism.'  This surgical treatment cannot be compared to the traves
ty pulled off by the neurosurgeon in Mexico with the adrenal transplant.
 That was snake oil.  The pallidotomy has been shown to last for some as long
as eight or nine years.  That puts the surgery back in the late 80's and is
an anecdotal reference by Dr. Lauri Laitinen.  The procedure is not
experimental and the potential outcome is not experimental.  The real
questions come from the skills of the neurosurgeon and patient selection.
 The medical community does a disservice to themselves and patients stating
this is experimental.  The insurance companies are looking for reasons to
deny benefits.  If the medical community worked closer with the insurance
industry, maybe some of these issues could be better handled.  That is a
subject for another time.
 
In my next segment I will discuss neurosurgeons followed by a segment on
patient select and then maybe some one will put together the comments of this
board and sell them for $500,000,000 so that we can finance a cure.  What I
say is my opinion only.  I am opinionated about some things.  Sometimes I
violate the saying, "It is better to let people think you are a fool, than to
open your mouth and remove all doubt."  With that as a background please
realize I am not the final word on anything.  Please feel free to express
your opinion by inking the pen.  The worst we can do is be wrong.  In the
mean time hopefully some truth will come out.
 
There are other subjects of great concern to the members of this board.  This
subject need only be a small corner.
 
Regards,
Alan Bonander ([log in to unmask])