Living with Parkinson's
in South Africa
The day after my DBS "Bilateral Subthalmic"
Operation! Contact me
How I discovered that I had Parkinson's
At first my husband noticed something strange. I walked without
swinging my right arm - it just hung down loosely at my side. I was
unaware of any pain or discomfort and was rather reluctant to go to
the doctor.
Then we wondered whether I had a tumour on the brain and on the
recommendation of a doctor friend, we consulted a Neurologist. After
a Magnetic Resonance Scan it was established that there was no
tumour. By process of elimination, it was diagnosed that I had
Parkinson's. Having had absolutely no record of my family having
this disease, I was astounded. However, one must face reality.
My symptoms
Looking back now, various Parkinson's symptoms developed which
were initially overlooked. I did not have much of a tremor as such,
only a slight one under stress. One of my more recent symptoms
was "frozen feet". This feels as though your brain is not getting
through to your feet. In other words, you tell your feet to move,
but they just don't for a few moments. The top half of the body
moves, but not the feet.
Turning on the spot was also very difficult, having to take quite a
number of small steps to change direction. Another Parkinson's
symptom I had was that I took small shuffling steps, dragging my
feet on the ground.
All my movements were slowed down, just as though I thought in
slow motion. My face showed little expression, mostly with a
mask-like blank look, which improved with medication.
However, the worst Parkinson's symptom which I had was
nauseousness. This was mainly due to the fact that I was overdosing
on my medication, called Sinemet. I felt that I had to increase the
dosage when I was feeling weak.
This however was most unpleasant! I remember one incident when I
was at a restaurant and, as soon as the food arrived, I had to go to
the "Ladies". It was extremely embarrassing, especially as we had
been invited out and I could not eat a thing!
Another effect of my high dosage was writhing movements with my
arms and legs. In fact it was almost impossible to hold my limbs still.
When relaxing, my legs used to squirm and I could never sit still for long.
Then Dr. Gardiner of Constantiaberg Medi-Clinic reduced my
dosage. This had an immediate positive effect, but left me feeling very
much weaker at different times of the day. For instance, I could not
make my bed some mornings and other mornings it was fine. Getting
dressed was a major operation and turning over in bed, even worse.
Some days it was fine and other days not. It took a toll on my
entertaining and social life which was most frustrating, as I could not
organise the tablets to suit my day, but just had to hope for the best!
On further consultation, I was told that I might be a good candidate for
an operation and was recommended to see Dr Melvill, a Neurosurgeon.
After I had been thoroughly assessed, the team of Dr Melvill and Dr
Baxter confirmed that I was a good candidate for an operation.
I was then admitted to hospital to be properly observed for one day
without any medication. During that time it became increasingly
evident that the planned Pallidotomy operation was not the correct
procedure for my Parkinson's symptoms.
The doctors told me that in two weeks time a Neurosurgeon was
coming to Cape Town from Sweden to assist at the first "Bilateral
Subthalmic Deep Brain Stimulation" operation to be performed in South
Africa. Dr. Melvill thought that I would be an ideal candidate for this
type of operation and suggested that I should also be examined by
the Swedish Neurosurgeon.
I duly saw the team and it was decided that I should rather have this
"Bilateral Subthalmic Deep Brain Stimulation" operation as my
Parkinson's symptoms were much more suited to this procedure.
This eventually lead to me having my operation!
THE OPERATION
from my point of view
Dr Melvill had warned me that I was to be in Theatre for the whole
day! This I found difficult to believe, but I soon found out why!
The day before my operation the Anaesthetist, Dr. Burger, visited me
in the ward. He was very kind and assured me that he would be with me
at all times to check on the blood-pressure, which, as you can imagine
was slowly going up! The scrub-sister, also introduced himself to me
and explained what his role in the operation would be. At all times I
was made to feel that I was being looked after.
After wheeling me into the waiting-room at 08h30 I was left alone for
a little while, noticing the activity that went on around me. Dr Baxter
took a "before" video of me in which I was to do certain exercises with
my fingers, and to walk and turn. I felt like a film star as there were
so many people watching me.
Now the most horrible part of the operation was started. This is where
they shaved my head to prevent any infections. For me that was most
traumatic, but I had no option but to allow this to happen. From this
point on I felt that there was no turning back.
Then I had to wait as Drs Melvill and Baxter worked out and checked
all the calculations. This is most critical as this determines exactly
where the probes are inserted and positioned in my brain, so there is no
room for errors and the calculations had to be spot on. I was kept in
good company by the ever pleasant nursing staff who were really
fantastic. At about 10h30 I was pushed into the theatre.
I was introduced to the theatre by one of the staff saying "And this
is our Theatre, where all the work goes on." I tried not to look,
fearful of what I might see. Dr Melvill asked me how I was feeling
and when I said that I was a little nervous, he told me that as soon as
they started working on me, I wouldn't feel nervous any more. Funnily
enough, this turned out to be true, although I was wide awake during
most of the operation. I was in fact asked to move my eyes, hands
and feet every now and then, so they could check that they were not
interfering with any other part of the brain.
First of all I was asked to sit up so that they could place the 'halo'
on my head. This took some time as they had to get it just right and
with a Doctor standing on both sides, muttering numbers to them-
selves and each other, I tried to sit as still as possible. Then I was
allowed to lie down and was told to 'Relax'. My head felt as though it
was resting on air, but Dr explained that I was resting on my 'Halo'.
I had a pad put under my bottom and one on the top of my leg
where they were earthing me, so that I wouldn't get a shock! There
the difficult time started for the doctors. I don't know exactly what
they did, and don't really want to know. The sounds were enough
for my imagination!
The time just started to fly by and I was concerned about their lunch!
I didn't want a hungry doctor to cut me up! However, they assured
me that they had that all under control. The thing that I found most
interesting was that at one stage I heard my brain waves amplified by
one of their instruments. They sounded just like the noises of dolphins
which was most fascinating!
Implantation method of the Activaź Bilateral
Subthalmic Deep Brain Signal Stimulation
Control device.
Soon I was told that they were going to drill into my head. I imagined
my husband picking up his power drill, although I didn't see it, it
sounded just the same!! These were the holes where the probes
would be inserted deep into the brain. For obvious reasons their
positioning had to be extremely accurate.
The probes are very thin wires, with micro-chips at the end. One was
inserted on each side of my head. Dr. Melvill was particularly careful in
placing them. When they were inserted to his satisfaction, he removed
my 'halo'. Then he and Dr Baxter temporarily stitched my head up.
At about 15h00 I was wheeled to the Magnetic Resonance room for
new scans. At this stage, whenever I moved my head I had a terrible
headache. It was explained to me that the reason for this was because
my skull had been open, which allowed air to enter. This however,
would soon stop, and it did.
The scans with the Magnetic Resonance Scanner confirmed to the
doctors that the probes had been placed exactly according to their
calculations and back to the theatre I went.
From this point on I was not aware of anything as I was given a
General Anaesthetic to put me to sleep. When I woke up four hours
later, it was explained to me that the two probes had since been
connected to the wiring running along the top of my head, then
along the back, down my neck into the shoulder where they were
connected to the battery operated DBS Activa Device. This is a special
very sophisticated type of pace-maker which shoots bursts of
electricity to stimulate the brain when needed. It is remotely controlled
and can be programmed as and when required.
I understand that I left the operating theatre at about 18h00, which
made it a very long and tiring day for me as well as for the doctors
and the rest of the team.
Post-Operative Care
On Friday night (the same day of the operation) I had the family
visiting
me and they tell me that I was bright and cheerful! The next morning
Dr Melvill visited me in order to "switch me on". I had been on no
medication since the day before the operation and yet there was no
trembling or feeling weak! Dr Melvill then "set" the Therapy Controller.
He asked me to walk down the passage and surprisingly, I could swing
my arms and skip and run.
For the first few days my wounds were covered (see picture below).
I was allowed to go home three days after the operation and was
asked to return two days later for a check-up and re-programming.
Then five days later I had the stitches in my scalp removed (see
picture below). Note how quickly may hair is growing!
It will take three to four months to find the correct settings and I
have
to be patient. Nevertheless it had an immediate positive effect. As soon
as the device was switched on, after the operation, I was walking,
turning and skipping without any medication!
I have been back twice since then to Dr Melvill to be adjusted and
to introduce a reduced dose of medication. This will be followed by
further check-ups.
This is how I covered my head
when I was not wearing my new wig.
I was also given my own Therapy Controller remote control, to allow
me to adjust my own setting as and when required. I have not used it
yet, but will eventually learn to programme the unit myself.
Activaź Remote Control unit for
adjustment and control of the implanted
Bilateral Subthalmic Deep Brain Signal
Stimulation device.
I hope that I may help some of you to understand the operation and that
you should not hesitate to seek help.
One year later!
On the 27th May 2001 it was a year that I had the
Parkinson's DBS.
My new hairstyle!
Before my operation Diskenesia was a
serious problem. I could not
keep my legs still when seated or sleeping. I felt the urge to move them
almost constantly and had a slight tremor in my hands at times.
I had little facial expression. I had difficulty in turning over in bed,
making the bed was extremely difficult as was getting dressed. Turning
around on the spot was almost impossible and the walking was very
problematic.
Following the operation I was a bit disappointed with my walking.
Immediately after the operation there was a substantial improvement in
this regard. Since then, there has been some deterioration, particularly
when the medication wears off. However, prior to the operation I had
to choose which problem the doctors had to concentrate on, my walking
problem or my diskenesia and my tremors. I asked them to concentrate
on my diskenesia and my tremors, which were seriously affecting me.
So the lack of an improvement was not unexpected, but always has
hopes. There has been a dramatic
improvement with diskenesia and my
tremors which have disappeared
completely. With the other symptoms
there have been various degrees
of improvements.
My walking remains my main
Parkinson's problem and the morningsI am very happy with the operation as it has helped me considerably
with my original symptoms. I have not turned up the device since
November 2000 because of unknown possible long term side-effects.
I hope that this will help you to understand my experience
with
Prominent People who suffer from
Parkinsons Disease
Please note that while we are providing the links on our WebPages
for your convenience, we take no responsibility for the content
thereof, as we have no influence over these linked pages.
Michael J.
Fox - Actor
Davis
Phinney - Professional Cyclist
Muhammad Ali - Boxer
Janet
Reno, US Attorney General
Hazy Osterwald -
Band Leader
South African Parkinsons Links
Please note that while we are providing the links on our WebPages
for your convenience, we take no responsibility for the content
thereof, as we have no influence over these linked pages.
Dr
R.L. Melvill - Neurosurgery
Deep-Brain
Stimulation experience of Margaret Maker
Parkinson's
Association of South Africa
They have a very good Newsletter with helpful hints
plus support groups for Parkinsons sufferers.
South African Parkinsonian Association
Private Bag X36, Bryanston, 2021
Tel: (011) 787 8792
Fax: (011) 787-2047
International Parkinson's Links
Please note that while we are providing the links on our WebPages
for your convenience, we take no responsibility for the content
thereof, as we have no influence over these linked pages.
Activaź Brain Signal Control
Therapy for Parkinson's
Parkinsons
Disease Learning Center 
Parkinson's
Foundation of Canada <> Parkinson's Foundation
Northwest
Parkinsons Foundation
Michael
Stern Parkinsons Research Foundation
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