Dear Elizabeth,
I suppose you have a stable reaction on your meds. If so, there is no
need to change anything. Things don't run always that smooth. Sometimes
it takes some experimentation to feel one uses the meds as they should
be used. Under certain conditions it is sound if a part of this
experimentation is done by a patient him/herself.
Compare it with cooking. A person who can't cook at all but tries to do
so with the help of a recipe is well advised to do exactly what the recipe
says. But being an experienced cook and using a recipe, it is possible to
be a little more creative. One is able to predict what the result of a
change will be. Many PWP's, after years of using sinemet on a stable
schedule, will have to use the med's with more conscious attention to the
effect it has. When the therapeutic window is smaller it will happen one
has too much or not enough meds. One has to learn to feel that.
Being in that situation it has been obvious for me that I could do small
exeriments: taking on a certain moment a bit more or less, maintain that
change at least a week and evaluate it. And then of course report it
at the next visit to my neuro. It is possible to make an agreement with
the neuro which experiments one can do and which not (like never stop
abruptly with a med.).
I never considered this as a lack of trust in my neuro, on the contrary,
I appreciate that he is able to deal with me as an equal. I have a regular
consult once every three months. The condition in which he sees me is not
necessarily representative of how I am in general The only way for him
to know about that is by listening to what I tell him. In most other
diseases other cues, outcomes of lab. tests can be used and so the
physician can feel he does not need the patient to be something else than an
object. A neuro treating PD however needs the patient as a "co-researcher".
I hope this explanation makes it all seem less scary,
Ida Kamphuis
Holland [log in to unmask]
Elisabeth you wrote:
High everyone, Something has been bothering me ever since I have joined
the group. I am puzzled about the adjustments of medications. Are you
simply changing the time of dosages or are you changing the amount of
dosage? I am 67/5 mo so I am not on the extensive treatments thst most
of you are, but to me this seems to be a dangerous thing to be doing.
Would you be so kind as to explain? Would be much appreciated.
Love
Elizabeth
