In answer to your survey on DBS/STN stimulation:
(a) I was operated on in May 1997
(b) When I first came to I was very confused but this was probably the
experience of the long surgical procedure and staying awake for most of it.
After about a week I felt something like my old self.
(c) The biggest Disappointment to me was starting to shake again and taking
medication. The frequent trips to the surgery to try for the optimal settings
caused me to lose faith in my neurologist as he was also learning about STN
stimulation. In the end I used the opportunity of travelling to Barcelona so
I went to Grenoble to visit Professor Benabid, who had supervised the surgery
in Sydney. I spent a couple of days being readjusted by Pierre Pollack and
was advised to try and get off levodopa and replace it with Parlodel. What
with all the travelling I became very sick and ankles were infected. I had an
allergic reaction to ergot and ceased the experiment. I now live with the
same stimulators that Pierre Pollack put me on and take one third the
levodopa I took before surgery. I take a very small dose of Artane which
helps the stiff legged Nazi march (goose step) -it's not funny ,not really,
and a rel!
atively small intake of pramipexole, which is just as well as it's
not available in Australia. I feel Dr O'Sullivan, my original neurologist
has learned to live with the changes, and so have I. I am presently feeling
better than ever, still holding a responsible position, and feel I have all
my marbles. Maybe my wife should answer your survey!
(d) The behavioural changes came before the surgery either because of the
Parkinson's or the side effects of levodopa. I have managed to regain a
little aggression but still hate conflict and confrontation. STN may slow
down the onset of Parkinson's but it don't cure it.
(e) Have already discussed the cut back in medication.
(f) As formerly from the music industry I've always had the attention span of
a gnat. We are renowned for it.
(g) I always wanted to go skiing. After the surgery I still couldn't ski.
All joking aside, if you intend to have DBS don't leave it to long as it is
fairly rugged operation. Don't expect miracles and you shouldn't be too
disappointed.
Peter Dawkins
