Hi everybody,
I have not been very active on the listS lately, but have been reading
all the messages. Many questions have come up again about Pallidotomy and
when to consider having one, disappointing results, etc.
Stan had the surgery in February at Emory. He has had some residual
problems with speech and a mild type of aphasia (we are getting a speech
evaluation today), but the overall results have been terrific. He looks
wonderful, no more mask. The dyskinesias are gone on the right side and the
severe freezing has disappeared.
If he had to do it over again, he definitely would. For us, the
decision boiled down to quality of life. There are lots of unknowns about
future research and eligibility for new treatments, given you have had the
surgery, but they are truly unknowns. Our long experience with this disease
and the research is that everything takes a LONG time - hence the Udall
Bill needs to get passed now.
Stan's quality of life when we made the decision was not good and
getting worse fast. We are active travelers and very interested in
concerts, plays and good food. We were still doing some of what we enjoyed,
but the unpredictability of how he would be, was really dampening our desire
to push ourselves. His daily routine was getting very difficult at times
and he was very frustrated, angry and depressed at times. He was beginning
to stay home most of the time when I was at work, because of the
unpredictability of the freezing. Meds were wearing off more quickly and
increasing it made the dyskinesias worse (I was getting 'seasick' at times).
So the decision for us was that now was the time to have the surgery, and we
are really happy we did. If it prohibits him from future treatments (and we
don't know that it will), we will face that when we get there. In the mean
time we are back to enjoying our life and continually looking forward to new
things.
I also wanted to add some information for Joyce. Stan's experience was
that immediately after the surgery, all symptoms seemed to be gone (but he
was not out of bed for at least 36 hours) and we were euphoric. After the
first week however, he got much worse, leaving us both very depressed. (I
don't care how much you know about this surgery, you still have very high
expectations.) Over time however, he has progressed gradually, and gets
better every week. It has been four months since the surgery. It takes many
months for the area around the lesion to heal completely, so you won't know
what the final result is for a long time. It is tough to deal with because
of those wonderful expectations, but in time I know it will be better for you.
Take care,
Susan Hamburger, CG for Stan, 15+ years of PD
It's a funny thing about life; if you refuse to accept anything but the
best, you very often get it.
W. Somerset Maughm
