Emily/Julian,

Hi, the ativan has always been so effective that we have
never had to deal with the reduction of its helpfullness.The
correct dosage was a joint decison. The doctor started Nancy
out at a low dose and with an understanding of what a
maximum dose would be that I could administer. There was a
period of time when it was critical to us. Now it is rarely
needed. I think the anxiety has a great deal to do with
building up coping skills as the freezing and muscle tension
begin to dominate the PWP's ability to move, especially in
bed. As coping skills improve and different devices are used
to assist, the anxiety can be reduced. Some of the aids that
Nancy uses now include a trapeze over the bed, and satin
sheets and silk pajamas. This increases her ability to
rollover and due the things that most of us take for
granted. Periodically I still have to help her out of bed
and to the bathroom. In my opinion learning how to accept
that helping hand was part of the anxiety reduction
equation.

Clozaril as best as I can figure actually permantly replaces
lost chemicals or rebalances the brain chemistry to
compenasate for the many alterations that come with dopamine
loss. In six years we have titrated upward once and then
back down again. Please remember that blood testing is
mandatory on this one.

Tweeking  meds periodically can be a powerful asset in the
fight but it has rarely come without much trial and error.
As new PD meds have been tried such as Mirapex, Requip,
Tasmar and Comtan we have had to monitor the effects on her
other meds. This was also true with the surgeries that Nancy
has had. This process requires a fair amount of patience and
is often pretty stressful for both of us. Honestly, 26 years
experiece with this blasted disease man be the most
important factor in figuing out how to respond to a problem.
Our current doctors all understand that now. None of them
were with us in the beginning.

Bob Martone
[log in to unmask]
http://www.samlink.com/~bmartone

-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]]On Behalf Of
Emily and Julian
Brinac
Sent: Monday, January 07, 2002 10:03 AM
To: [log in to unmask]
Subject: Re: Help for Sleep/Anxiety..?
Importance: High


Bob, your answer to Roberta is very interesting.
But what do you do when human body needs more and
more of the substance to get to sleep or to calm
one down? Do you keep on adjusting quantity of
medication? Do you at times have to change
medication and , perhaps, go back again, once the
substance is out of system. Did you try melatonin,
natural sleep supplement?
Emily
  ----- Original Message -----
  From: Bob Martone
  To: [log in to unmask]
  Sent: Monday, January 07, 2002 10:45 AM
  Subject: Re: Help for Sleep/Anxiety..?


  Roberta,

  I went through that difficult time with my wife Nancy many
  years ago. She is 56 and has had PD 26 years. For
immediate
  relief from anxiety I would give her ativan. The
ativan was
  so effective that we jointly decided that I would help her
  in managing that aspect of her medication. In 15 to 30
  minutes it would settle her down and allow her to fall
  asleep no matter what room of the house she was
in. This was
  great but you can imagine me trying to get her from the
  kitchen/living room/bathroom etc. to the bedroom
when I too
  was very sleepy and just wanted to get some rest.
We worked
  through it and it was great. By the way she very rarely
  needs ativan (generic is lorazopam) anymore.

  For the nightmares, verbalizations, visualizations and
  phychosis that can come from PD/PD meds we found that
  Clozaril is the best and preferred my many
professionals who
  understand the interaction of PD meds. Our
problem was that
  we didn't understand that the neurologists seemed
to prefer
  to leave that problem to the psychiatrists. The
psychiatrist
  nailed it after one visit. Today (about 6 years
later) Nancy
  is still on Clozaril but it is handled by her GP. The only
  down side is that you must get a blood test every
two weeks
  for possible white blood cell count reduction.
This has been
  a small price to pay for the benefit derived.

  Bob Martone
  [log in to unmask]
  http://www.samlink.com/~bmartone

  -----Original Message-----
  From: Parkinson's Information Exchange Network
  [mailto:[log in to unmask]]On Behalf Of
  Roberta Nelson
  Sent: Sunday, January 06, 2002 10:25 AM
  To: [log in to unmask]
  Subject: Help for Sleep/Anxiety..?


  I would greatly appreciate finding out what is
  considered 'safe' for sleep
  help for PWP's using Sinemet & Eldepryl.
  Apparently, most of the usual drugs
  for these problems may not be used.  The only class
  of drugs I have found so
  far not contra indicated is the Benzodiazepines.
  My husband, 68, male, PD
  for 8+ years (Sinemet 10/100 3-4 X day, Eldepryl 5
  mg 1 X day) is currently
  having a horrible time as bedtime comes.  He gets
  anxious and restless.  He
  has somewhat of a phobia about sleep time because
  he has SO much trouble
  going to and/or staying asleep (also has all the
  'usual' PD nightmares,
  verbalization, thrashing, etc.)  He sleeps little,
  and intermittently.  It is
  becoming an overwhelmingly disturbing issue for him.
  I am researching this in several places, but would
  like to have your input --
  what have you used/found to be helpful?
  He has tried Xanax and Vallium, neither seems to
  have much of an impact.  I
  believe that an anti-anxiety drug may be a good
  choice.  Before we go back to
  the Doctor (who is not very helpful) I would like
  to compile a list of drug
  possibilities.
  Therefore, I ask -- what has worked for you -- what
  would you suggest?
  Would an 'extra' Sinamet at bedtime be helpful?
  Thank You for any advice
  Roberta, CG for Clyde

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