Speech to Parkinson's Mona Vale
April 1998
by Barry Black
POB 822
Mona Vale
2103

Background

I was diagnosed with Parkinson's in my early 30's and for the first 10 years
it was not
really a major problem. My early symptoms were my right arm having
sensations, my
arm not swinging and  my inability to write. During this time I was taking
Sinemet and I
managed to work at my job till age 43. During the next 10 years my symptoms
increased
with the most devastating symptom being my balance and my falling down 20
times per
day. The medication that was used during this time was basically Sinemet and
it was
increased from 5 units to 9 units per day plus additional medications.

Qualifications

As best as I can understand it ,the minimum qualifications for the operation
are a young
age, good general health, a response to the drugs especially Sinemet and the
ability to pay
for the operation which by my estimates cost about 35,000. If you belong to
medical fund
with full benefits you should have most of this paid for you.

Operation

The operation itself lasts for 12 hours and you are awake and can hear all
the discussions
in the operating theatre. The night before you are required to sign a
document releasing
the doctors from liability in case something goes wrong. The chances  of
fatal failure are
1 in a 100. You must be mentally ready for the operation weeks in  advance.

The first part of the operation is to have your head put in clamp and the
clamp locked to
the bed head. You are then put into a scanning machine for 2 hours. I was
told that this
could be very claustrophobic and so to help myself I kept my eyes closed
once  I entered
the room and during the entire 2 hours. I felt that I had fallen asleep even
though there
was a constant sound of jack hammering. I was told that I could get a sore
back from
lying motionless for 12 hours .I solved this problem by putting pillows
under my knees
and getting my neck solidly supported. Needless to say you can not go to the
toilet. I did
not drink anything for 12 hours before the operation. In this operation you
are not
allowed to take any medication for 12 hours before the operation or during
it.

I experienced no pain in the operation and no other difficulties. The reason
my head was
put in a clamp was so that the neuro surgeons could operate using the 3
dimensional
picture of my brain from the scanner. The neuro surgeons inserted a test
electrode in the
brain and drop it down to different target points where the neurologist
tests the
desirability of the insertion of the electrode at the differing positions.
The electrode is
inserted and tested  at the target plus 1mm, plus 2mm, plus 3mm, minus 1mm
and at
target. The best position is then selected for the patient and a permanent
electrode is
cemented in place. Once this is completed the same procedure is done for the
other side.

Results

The immediate results were the inability to speak very clearly and increase
in my
mobility. The next day I felt alert and awake and no side effects other then
the inability to
put two words together ( only some patients experience this). I was eating
and sitting  up
in bed satisfactory.

One week later they did the operation to implant the pulse generators in my
chest .This
part of the operation was done under anaesthetic (for about one hour ) and
this there was
pain for about one week. One week later (when the pulse generators are
connected to the
electrodes ) the neurologist does tests with his computer.

I found that the first program that was put into me lasted for four days and
then I
deteriorated. The second program lasted for about four days and also
deteriorated. I was
released from hospital after a  total of 3 weeks and required the use my
walker and cane
many hours of the day.

At my one month check up I was given a new program but still required the
use of my
cane. At my 3 month check up, the next program variation felt great and I
was good for
couple of weeks then  deteriorated .During all these months I continued to
take
medication at a lesser rate then before and reduced the use of my cane. At
four months I
was receiving electric shocks down my arm and the program was altered (in 5
minutes)
and it eliminated the shock.

At five months I was still experiencing on and off situations with a reduced
medication
and potential "on time" of 12 hours per day. The addition of Tasmar seems to
have had
some benefit but I am now adjusting my medication to assist in the
management of
dyskenesia .

I am hopeful, based on the experience of others, that the first 6 months
were the hard
yards and that the second six months we will see further improvement in my
hand
writing, balance, dyskenesia.

If I to do it again, I WOULD.

----- Original Message -----
From: Fleming, Jennifer <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, July 25, 2000 02:18
Subject: Re: DBS surgery question


> Barry, Would you please send this to me directly.  I couldn't read the
> attachment.  Thanks, Jen - Dad w/PD 55/39
>
> -----Original Message-----
> From: Barry Black [mailto:[log in to unmask]]
> Sent: Monday, July 24, 2000 3:20 AM
> To: [log in to unmask]
> Subject: Re: DBS surgery question
>
>
> please find my experience with DBS attached
>
> ----- Original Message -----
> From: Kari Hughes (Join the list) <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Friday, July 21, 2000 23:01
> Subject: DBS surgery question
>
>
> > Hello,
> >
> > I am seeking information for my husband's father.  He has had
Parkinson's
> for
> > 15 years and is still a young man (55).  Recently a neurologist advised
> him
> > to have the deep brain stimulation implant.  His surgery date is fast
> > approaching and he is looking for feedback from patients who have had
this
> > procedure.  (Was it worth it? What improvements did you experience?
What
> > negative side effects did you experience?   Do you still have to take
your
> > medication?  Etc.)  Thank you very much.
> >
> > Sincerely,
> >
> > Kari
> >
>