I talked with Carole Walton yesterday to bring me up-to-date on how
Margaret is progressing after her DBS the 28th of last month.

After the bilateral procedure her medication was simplified and reduced. A
side effect was that she developed an internal tremor. Margaret had none
before. The doctor has increased her Sinemet and the tremor has been reduced.

She has the devices turned on for the first time next week on the same day
I have my first side DBS done.

I had balance testing this week in conjunction with my DBS. The study
includes patients with PSP, PD and ET. I will have the same test just
before my stimulator is turned on and then after. This week's testing was
to establish a baseline.

The Balance Master was one machine I tested on. It is like a large voting
booth with a computer monitor in the back wall. There were precise points
marked on the floor of the machine on which to stand. They rigged me with
safety harness to catch me in case I fell.

In the center of the computer monitor was a small box and a stick figure of
a person. In a circle around the small box there were numbers. Just
standing and shifting your weight moved the stick figure. To start with you
had to stand so that the stick figure is within the box. The numbers would
change from a number in a box to a number in a circle. When a number
changed you lean so that the stick figure moves toward the number and hold
that position until the time expired for that position.

The numbers were positioned so you leaned forward without moving your feet,
leaned to the left, leaned to the right, leaned back and then diagonally
forward left and right. Each set of tests were done 3 times. It wasn't
possible for me to reach the desired box most of the time by shifting my
weight. Center your figure, wait for a number to change, cause your figure
to move as close to the number as possible by shifting your weight, hold
it. That was the procedure.

Another machine was kind of like a gymnast balance beam except it was on
the floor and it measured the force various parts of you feet excerted when
you did certain tests. One of the tests was toe to heal walking along a
line. Another was steping on a box and coming down on the other side.
Another was arising from a chair. Another was standing on one leg while
keeping your hands on your hips with and without the eyes open. Another
test involved walking down the beam and turning left and returning and also
turning right and returning.

Naturally, impairments will limit the types of testing available but these
perhaps will identify the strengths or weaknesses of the DBS procedure.

Since my DBS will be in a study that is staged, it will perhaps give more
specific data as to what happens when one side is done and then what
happens different when the second side is done. These things take time and
Dr Francel's team will take a year or two to amass enough data to publish.
A description of DBS as I will have it is at:

http://parkinsons-information-exchange-network-online.com/archive/109a.html

If I live through the first surgery :-), My second side will be done the
4th of April.

Of interest to US patients on Medicare, the only cost is the Medicare Part
A deductible which is $795 each hospital stay this year. Since mine is
staged more than 60 days between them, I will have to pay the deductible
twice. My medigap policy doesn't pay this deductible. For disabled, the
Plan A policy doesn't pay this out of pocket deductible.

The studies, psychological and physiological are paid by Medicare.

I'll keep you informed... if able :-).

John

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John Cottingham