Rosemary: I just have to respond to your troubles right away because my
husband's experiences may give some kind of insight into what you may be
dealing
with and some course of action. # 1 - it is critical that you , as caregiver
, make
a method available whereby YOU KNOW EXACTLY WHAT MEDS HE HAS TAKEN.
You underestimate the power of Pd medications, which can cause as much
difficulty for him as the condition itself. His symptoms may be reflecting
the agonies of the PD itself OR he could be severely overdosed, which can
also be life
threatening. You will really have to sort out which it is yourself - even
your Dr. won't
be able to really tell as much as you can......
The past couple years my husband has progressively learned
what is
involved in being undermedicated and how much weakness and disorientation can
come from overexertion and undermedication (which the meds he's on right now
may not be optimum anymore for the stage of progression he is in - the
situation is
always changing you know - it is a progressive illness). He has experienced
total
exhaustion, inability to move, walk, speak clearly, looks confused and
scared, and
on his way to total rigidity when he gets out to some event in public any
more and
walks too far, is involved in a crowd (such as Wal Mart) and his Sinimet
seems to
run out. Different people may have different stress points - even shaving
may be too
much exertion, effort and cause loss of Levadopa availability.
Some recommendations based on our lifestyle ( we try to stay
active , busy, and "normal" as possible) :
Do a workup of his regular dosages of medications at
regular periodic
intervals - all at one time - we have a weekly pill minder that has
compartments for
a full week - four dosage boxes per day. I lay out his dosages at a time
when I can
totally concentrate on getting it right.
I maintain a medicine diary (a stenographers notepad)
with each day
and the daily times (actually taken) noted with each dosage noted below. I
then
put a little check mark that it was taken ( I do all this at each time he
takes his meds- only takes some seconds). If we want to try a change or need
something
different added at a specific time I can make note of it on this diary and
WHEN IT IS
DONE make a check mark at it.
The diary is invaluable for evaluating what has happened
each day,
including falling, difficult time, problems, etc. and being able to reliably
evaluate
what sequence might have occurred before some crises occurs to get clues why
and what is happening. (He has experienced dystonia, cramps, and other pains,
which made us think we may need to call or visit the hospital but on
evaluation came up with a reason and plan of correction which so far has
worked for us).
This system may not be suitable for you but perhaps
some new ideas can keep you from making trips to the emergency room - which
is what we're
all working on - so I sure hope some of these thoughts can be helpful to you
and
your husband.
Will be thinking of ya'......... Marie
Carepartner to husband 70/l3
