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The Lamoreaux Family
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POND TALES
Latest Update made
12/10/2006
I have had 3 programming sessions, at the Cleveland Clinic, as they
are called, to adjust the voltage at the DBS wires. As of
December 5th they only had to adjust the probe which controls the
left side of the body as I was still having a slight tremor in the
left leg. That has now been taken care of. It appears to me that the
surgery has removed about 70% of my tremor. I still have some
noticeable tremor that surfaces during anxious moments, but the
intensity is no where near what it was before the surgery. I have
had the medication run out while driving and still feel safe,
whereas if it had happened before the surgery I would have had to
pull off of the road. The Clinic doctors are very pleased with my
progress, but I point out to them that unlike many of the very sick
people they see who have Parkinson's I only had tremor. A very sever
tremor it is true but nothing like the many people I have seen who
are unable to take care of them selves.
Now it has been
over 2 months since I had the second surgery which is when they
inserted the control packs and connected the wires to the
probes. After 2 programming sessions the tremors are almost
completely gone. I am taking a pill every 5 to 6 hours where as I
was taking a Parkinson's pill nearly every hour prior to the
surgery. The tremors are not cured only suppressed buy the action of
the current that is being directed at the part of my brain that
controls movement.
I have a hand controller that I carry when I leave home that I can
use to turn the controllers back on in the event that they
inadvertently get turned off by exposure to a hi magnetic field such
as airport screening or the theft detecting devices used by some
retail stores such as K-Mart.
Two days ago was 9-11. It was a day I will probably
remember the rest of my life. Not because of some fanatical young
Muslim crazies crashing some airliners into the World Trade Center
buildings in New York City. About that let me tell you there are not
enough virgins out there for me to want to ram my tender body into a
steel sky scraper on the slender promise that I would be a
martyr and get those 72 virgins when I go to the heaven they were
promised. Just think of it with all those young men killing
themselves they must be getting down to some pretty slim pickings in
the virgin department. Enough of my feeble
attempt at humor.
It was 9-11-06 that I first got turned on. Diane was sitting right beside
me so I guess it was OK getting turned on by a pretty young
physicians assistant. What I am talking about is turning on the
voltages to the wires that were inserted into my brain during the
first operation last month. I will be have these programming
sessions once a month for about 1/2 a year where they will be adjusting
the voltage to attempt to eliminate the tremors.
It was 8am on a Monday the 11th that I was scheduled to have the
electrodes turned on for the first time since the surgery when
the wires were first inserted nearly a month before. Because of the
early hour of the appointment Diane and I spent the night at a hotel
next to the Cleveland Clinic.
I do want to mention at this point if you remember I said I was concerned
prior to the surgery that I would need to be awake for the entire
surgery and be totally unmediated. That I was concerned that my back
would be a major problem. But that did not happen. All I could only
remember was hearing the right hole being drilled, Dr Rezai
said I should not have heard that. I also remember what
seemed like about 20 minutes at the end when the doctors were
testing the wires by turning on a voltage to the different
contacts to find the best placement for the wires. This is why I had
to be awake so they cold see and hear my reaction. I
may be repeating myself but Dr. Rezai had me stick my tongue out at
him about 20 times, Then he would have me say the months of the year
backwards, It was a joke among the doctors I always forgot October.
All the time they were varying the voltages on the different
contacts they would be watching and listening for a reaction
on my part. I don't know what the tongue was doing but there were
times when I would be saying something that I would sound like I was
talking with a cotton ball in my mouth. At an other setting I could
feel little electrical shocks all along the right side of my body.
After it was all over several of the attending doctors mentioned
they liked my selection of music that I had brought in. I thought it
was strange at that time because all I could remember hearing
was a couple of cuts from Johnny Cash and a cut from the Wilburys
that I asked them to put on. I saw a couple of the doctors in the
hall outside of Desk S31
and they said I was awake the entire time. So I guess I was wrong,
it appears to me that I may have been awake for the entire
operation, about 8 hours, but do not remember anything I said or did
during that period except for what I mentioned above. I want to take
this point to apologize for anything I said or did that may have
offended anyone who may have been there to take care of me.
Please understand that I have a weird sense of humor, which when I
am aware of what I am doing, can get me into trouble, but as I was
in a apparent sleep state, I should not be held responsible for
anything I said or did.
Now back to 9-11, the Doctors assistant first started adjusting the
currents on the left implant which controlled the right
side of the body. After about 10 minutes of different voltages at
the 4 different contacts on the left implant, I started to see the
tremor going away on the right side. I did not jump up and
hoot and holler. I had seen my tremors come and go before, but this
was different. It was really gone. I did not have that overall
emotional feeling that I normally had when I was unmediated . It was actually gone.
Next we shifted to the right
implant which controls the left side of the body. This
proved to be more difficult a fix. We never were able to completely
remove all of the tremor. It seemed that maybe this is where some of
those other tremors were coming from which would always
confuse the doctors. So we set the voltage at the point where it
seemed that it provided the most control. Remember I am totally
unmediated at that time, so we may be seeing some Myoclonus tremor
creeping in which is being controlled by the anti anxiety medication
that I normally take in conjunction with the normal Parkinson's
medication.
Before I close this section of the
Frog Pond I do want to say as we were finishing the
programming session, Dr. Giroux came in, she had a big
smile of relief on her face. I believe this was the this was the
conformation that I was looking for. Because the
responsibility of selecting me as a candidate for the surgery was
mainly in her hands and because of the many types of tremor I showed
she was concerned that I may not get but 30 % improvement. But by
the look on her face she was genuinely pleased with the way it
worked out.
In about a month I will go back and have them tweak the voltages,
and begin to decrease the amount of medications I am taking. This
process may take 5 or 6 sessions. Then I will go in for check
ups ever 6 months.
The next morning at home when I woke up It was weird. I was over due
for a pill. My right side was perfectly calm while my left leg was
bouncing around a bit. Later in the day after going to the bath room
I stopped to wash my hands. When I looked in the mirror I did not
recognize my self. There looking back at me was the old me. My smile
was back. Over the years as Parkinson's made me tremor it also took
away my smile.
If you remember if you asked me prior to the surgery was I nervous
about the up coming surgery.
My response to you was Yes, I was not afraid of the surgery. I
had confidence that the doctors were competent, but what I was
worried about was the diagnosis. The diagnosis was always very thin.
The word tremor is not a illness but a symptom of many unrelated
illnesses. In many cases tremor is not diagnosed from a blood sample or a spot on a MRI.
Because most tremors are diagnosed by watching the patients
reactions to time tested movement commands ordered by a Neurologist . Because of the complexity of my tremor,
few of the doctors I saw were willing to take
a stand and make a solid diagnosis. Most just said that I had a
sever Parkinson's like tremor which had Essential tremor, plus
maybe Myoclonus and possible other tremors mixed in. To confuse maters in my case
I would show different tremors during the period when I was going
from a medicated state to a unmediated state and back to fully
medicated. I made a DVD movie of my self as I went through the
different stages of the medication wearing off. I knew that the
doctors did not have enough time to sit with me for the entire cycle
as my medication wore off and then started working again after I
took a pill. Along with the DVD I sent a written copy of what
I was feeling and at what time so they could skip directly to what
they wanted to see. Also to confuse maters more I would show
more than one type of tremor at the same time. There were only 3 doctors who
were confident enough to say the word Parkinson's. Dr Evans,,
formally of the Cleveland Clinic. Dr. Hallett of the NIH in Bethesda
MD. and a Russian Doctor whose name I do not remember who I saw in
the spring of 2006. at the Cleveland Clinic. Dr Rezai, the
surgeon who would be doing the surgery said don't worry I can fix you. He explained the DBS
surgery is designed to limit tremor.
It is now August 30th and I think I can now begin to fill in some of
the missing pieces, that is maybe answer some of those
questions I did not have an answer for when I first emerged
from the surgery.
I will begin my
story at about 6am Monday August 14th, and what a story
it is. First it was not a fabrication that I heard that the
doctors at the Cleveland Clinic were anxious to practice what they
had been learning under the tutelage, of Dr. Rezai. On the
morning of the 14th, 4 doctors as best I could count,
 rushed
into my Cleveland Clinic room one of which was holding a medieval device that
looked like it could have been
invented by Dr. Who. But who you say is Dr Who? Dr. Who
is a time traveler on British TV. Any
way back to the device. After a explanation of what was going to
happen, one of the doctors smears my head with this
red liquid which he says will prevent infections. With that done they begin
to arrange the frame as they called it. Somewhere before I had heard
it called a halo. I will tell you, the person who
designed that thing is not destined for heaven. It had 4 very sharp
screws in the corners. I could only guess what they were for. The doctors then proceeded to inject a
liquid like nova cane into the areas where the screws would touch
my head.
After a short period of time out came the wrenches and screw
drivers.
 They
then proceeded to tighten the frame to my head. you can see in the picture
above that they made sure it was tightly screwed into the
scull bone. Just like the literature said after about 10 minutes the
head pain went away and you were left with the feeling that you were in a
place where they sell hats. And these doctors were trying to sell
you a hat that was about 10
sizes too small. After an inspection they all agreed that it looked
pretty good . No one asked me my feelings.
After the frame was on we rushed down to the MRI room, as the 3 MRI's
that I had taken the past Monday were blurred. Too Much
Shaking Going on. To stop the shaking a tranquilizer was injected
into my IV line. After that we rushed to the other side of the
hospital for a CAT Scan. Then it was into
the operating room. I remember the temperature was about 15 degrees
cooler there and there were small groups of people huddled
around probably discussing what they were going to see. While getting onto the operating table, I believe I
remember making a general statement to all the people who were standing
around. " I said I knew they were planning to drill a couple of
holes into my head and I wanted it known I wanted the royalties to any oil they found"
I would like to say
that they hadn't taken my suggestion of substituting a water bed or
one of those space foam beds as I was sure my back was going to
kill me lying in one position for the entire operation that was
expected to last over 6 to 10 hours. But onto the table I went and that was the last thing I remember until
Dr. Who got out his Black and Decker drill. Later I was told I was
not supposed to hear the drill as it bore a approximately 3/8 inch
hole through the scull. There was no pain, I just heard what I
thought was the boring of the right side hole. I then must have went back into la la
land. I remember waking as Dr, Rezai and one of his accomplices
began testing the electrodes that they had implanted in each of the
holes with a very low current. First they would say stick out your
tongue. Then it was name the months of the year backwards. Joke was
I could not remember September or was it October.
then back to the sticking out of the tongue. Then I had to say a sentence or 2. By
this time I was getting
pretty tired. It was then Dr. Rezai's pretty young assistant
came in to the room. It was her job to keep me alert and aware
of what was going on so they could see my responses to their tests.
I remember saying to her that I was getting very tired and was not
sure I was going to be able to finish the tests without a rest.
She began massaging my neck and arms. I
began to feel better almost as soon as she began to rub my neck. That was all I could remember. I had expected that I was going to be
awake for 6 to 8 hours on this small uncomfortable operating table.
But I was wrong.
Several of the doctors later said that they liked my selection of
music although I confess had only heard several Johnnie Cash songs and some of the
Wilburys cuts. I suspect now that they had played most of my
CDs, And were having a good time while I lay
there on the table in my dream like state. I stayed in the hospital all of Tuesday and was
released on Wednesday morning.
Amie and Tom arrived on August 10th to be with Bubba and Don
and mom in the
Clinic waiting room. I told them their job was to try to
hold mom back
from cashing in
the Frog's insurance policy too soon.
We
had been told that someone will keep them informed of how the
surgery is going. Mom and the kids had the hard job as it seems
all I did was lay around all day
Wednesday the 23rd, I will go in for an out patient operation where they will
connect some wires to the terminals that are already in place from
the first operation. They then run the wires down the inside of the neck to
an area in the chest. This is where the control modules were
implanted. For this operation they used
standard methods to put me out. A standard 1 pound
hammer worked fine. When I started awakening I noticed the nurses
were looking at me kind of strange. It seems I must have had a bad
reaction to the hammer as I must have thought I
was a chicken and was trying to fly out of the bed. I regained my
senses I remember
thinking I had better be good or the nurses would think I was crazy.
All of the
stitches removed on 9-6
.
The picture to the left shows the 2 incisions in the upper chest to insert the
Medtronic's control packs. The controllers contain the batteries and
control circuits which will get turned on in about a week. They can be switched
on/off by a small magnet, just like a pacemaker. These were stitched
up with dissolving stitches and some super glue. The first programming session will be on
9-11. The picture below shows a dressing over one of to areas that
the brain wire was inserted in the 8-14 surgery. The dressing was
applied after the wire to the control pack was connected on the
23rd. There was an identical one on the opposite
side of my head but it had fallen off. Now all the cutting is done,
and the healing must begin. Because the doctors want the wounds to
be nearly healed, I am
still shaky and on my pills as before,
 hopefully
we will be able to cutback quite a bit after the programming
sessions begin, they wanted the wounds to be pretty well healed before they
start the current to the implanted contacts. Then I will have programming sessions once
a month for the next 5 months. After that it's every 6 months for a
check up.
All my joking aside Dr. Rezai
and his team did a great job of a difficult surgery. I am sure there
are plenty of risks in this surgery They just made it seem easy.
To
learn more about this surgery scroll to near the bottom of
this page click on the DBS link to go to the Cleveland Clinic Link
on DBS. There are some other pre surgery comments in this area. Some
of the comments may sound negative but understand I had been pushing
hard for several years to get this done. And at times I was not very
happy. Sorry but there is no music on the
Cleveland Clinic page . Click your back
button to return to my pages.. Feel free to hop around the Frog
Pond
I had mom take this picture of Old Baldly
and Minnie. I had my hair trimmed as bald as my barber
would dare as a special treat for Tom. This is Saturday August 12, as I am pretty sure I am not going
to be picture perfect after the operation.
 I hope you can make out
Minnie on my lap. By the way I think I was rubbing her nose so see
would not look up. Click on this picture or the frog to see a
slide show of the
wine tasting tour we took as a family
The Frog is going to have his much
wanted surgery on Monday Aug 14th 2006. I
guess the doctors flipped a coin and I won. Or at least I think I
won. Have you ever played a game of cards where you think you have a
pretty strong hand but there is always the chance that another of
the players has a hold card that beats your hand. We have been
playing this hand for over 30 years now, and we think we know what
all the other players are holding. But there is always that feeling
of doubt, that someone has your ace. I am quite confident of
the skills of the doctors that are going to be doing the procedure,
I wonder what kind of music they will be playing when the surgery is
going on. I will start worrying if its something like "Shake Rattle
and Roll, or Hole Lota of shaking Goin on" Maybe al little Rick
Nelson or the Traveling Wilburys would be nice.
I talked to the nurse in charge
and she said bring any music I want, the doctors have heard it all.
So here come the Wilburys and Beatles and Rick maybe a little
Blondie and who can have brain surgery without the Dixie Chicks.
This past month has been full of
tests, interviews and another MRI of the brain, in preparation of
the proposed
DBS surgery. I went through 6 hours of testing to check my
mental status, a couple of weeks ago. If I had known ahead of time
that all they wanted to know was how dumb I was, I could have saved
them a lot of time.
Diane and I interviewed with some
members of the post operative team. They told us what I would not be
allowed to do, after the surgery. Number one on their list was
no more MRI's. From what they said, hi magnetic radiation sources
can cause the wires that remain in the brain to heat up. Needless to
say cooking the brain is not high on my list of things I want to do
before I leave this earth. I was told not to go through the Airport
x-ray screening machines. I am supposed to tell the
understanding operator that I had a brain pacemaker inserted and
their machine may be hazardous to my health. I wonder what is
better, cooking a few brain cells or being cut in two by a rabid
Muslim Homeland Security guard carrying a AK 47 rifle, issued by the
NRA, who can not speak English. Just because I tried to get onto a
airplane without following Big Brothers rules.
Last week Diane and I met with the
surgeon and his number one man. Guess what they both spoke English.
Well at least close, The assistant is from one of those countries
that English is not their native tongue. The nurses call him
Dr. Melin ( his first name) as there is no way you are going to
pronounce his last name. Even when Diane asked how he pronounced his
name, he said Dr. Melin. Dr. Rezai, the surgeon who will
be doing the actual surgery, is well known in surgical circles
for his skills in doing this surgery. I believe we were told
he had done over 700 DBS surgeries. I hope since he has done so many
of them he is through practicing and does it right. Diane told
me not to mention it, so I will will not say any thing about my
first impression of Dr. Rezai, since I am getting more
ethnically prejudice in my old age, it may not sound right.
After talking with Dr. Rezai and hearing his reassurances that he
would take very good care of me, I felt much better. Strange but he
sounded a little like ronny rayguns in the election campaign of
1980. "Vote for me and I will help you out". With emphasis on OUT.
In case the reader is not aware I was an Air traffic Controller
until 8-3-81 when I had a disagreement with the president.
With Dr. Rezai though, I feel I am in good hands. I still wonder
what middle eastern country he comes from, and what his political
leanings are. Just because I am a bushwhacker whacker doesn't mean
that I am home free. By the way, Diane feels he looks like he may
have been Mexican. Well that's a relief.
In case you see this Dr. Rezai, Just joking. Remember you
promised to put a smile back on my face. I will be holding you
to it. Just Keep a smile on yours.
In August we drove to Maryland to visit
Amie and Tom and to go to the National Institutes of Health in
Bethesda, Maryland where Don was evaluated by one of the leading
physicians in movement disorders. Their conclusion is a rare
form of Parkinson's disease. We are now waiting for
arrangements for tests and interviews at the Cleveland Clinic for a
procedure called Deep Brain Stimulation. This is major
surgery, a long procedure and long recovery. We ask that all
of you keep Don in your prayers and that this procedure is
effective.
Also pray that the doctors who do the drilling, drill in the right
spots. And if they strike oil we get the royalties.
The New Years Story begins today
My shakes continue to hold me
down. Surgery is still the best option we are holding out for
, but the final decision from the doctors at the Cleveland Clinic,
if the will cut or not, has not been made.
 
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