Doug -  Y

You've received lots of good advice.  I'd second the suggestion to see Dr.
Rajesh Pahwa at KU Med. in KC.  The appointments number is:  913-588-6985.
You should be able to drive straight north on I-35 and get there in about two
hours.   I suggest when someone calls you back (assuming you get an answering
machine) that you tell them the urgency of your need to see the doctor due to
your employment situation.  If you can tell your employer that you have an
appointment with a Movement Disorders Specialist and are hopeful that with
his help, you'll be significantly improved, I think the employer will hold
off on making a decision.  If you feel it's necessary, you can frame it in
terms of finding out whether there's significant improvement possible or
whether you need to go on disability.  I wouldn't put it that way, though,
unless the employer brings it up first or seems to be strongly hinting in
that direction.  (I worked as a Human Resource Manager, and this is my view
from the employer's standpoint).

No doubt others *do* perceive you as looking "mad" a good part of the time.
It's part of the facial mask of PD.  I and other caregivers have talked
privately about how difficult it has been to live with just that aspect of
the disease.  It appears that our "significant other" is angry with us all
the time, and even after we realize that the PD causes it, it's hard to get
out of the habit of "interpreting" the look as anger.  I'm sure, too, that
your wife is frightened and reluctant to face "that bridge" you may be coming
to.

One suggestion I'd make before you give up on working (or allow your employer
to make that decision for you) is to talk with Dr. Pahwa about DBS.   Dick,
my husband, ended up having to go on disability after 13 years of PD, but had
DBS surgery within the next year, and made significant improvements.  We'll
never know for sure, but we felt that he could have continued working if the
surgery had come along a year sooner.   He is now 19 years post-diagnosis,
and is still far better than he was pre-surgery.   Dick's mental function is
much better with the DBS - not only do we notice it, but it was shown by
objective tests via PET scan in NY as part of an experiment to answer that
question.  Your confusion and forgetting sound like Dick's problems, but when
his stimulator is on, he thinks more clearly and remembers better.

The other thing I'd suggest is that you do ask Dr. Pahwa or another doctor
about adding Mirapex or Requip if you're not already taking one of those.
The symptoms you describe make it sound as if you're undermedicated, but
you're likely to have better results adding an agonist rather than just
increasing the Sinemet.  You may even be able to reduce the Sinemet if an
agonist works well for you.

Dick went through a period of severe depression both before and after he went
on disability.  Both agonizing over needing to quit working, and adjusting to
it afterward, are extremely depressing in themselves.  But we found that when
Dick added Mirapex, his depression was instantly gone.  We now believe
strongly that depression in PD is as much a function of low dopamine as
anything else.

Good luck to you.  If you'd like more info about DBS or Dr. Pahwa, drop me a
note at [log in to unmask]

We live in Lawrence, KS.  If you'd like to talk on the phone, let me know and
I'll send you our phone number.

Margie

PS  I grew up in Wichita, and my parents and brother still live there.