Bruce,
If a neuro is knowledgeable, the information that he needs and often lacks
is not more
publications about meds, but an exact as possible description of your
symptoms in relation to the meds you take. If you feel things are going
wrong, it might be usefull to make a description of your symptoms as they
now happen to be during the day. To make a descriptiom like that
surveyable, it makes sense first to describe each symptom in detail and
after that try to make clusters of them, label each cluster and relate them
to the schedule. Having finished this it might be possible to specify the
questions to the neuro. If the consultation has to be restricted to 20
min., I guess the neuro can not analize your data himself.
It might be more productive first to try to have the good questions (a few
of them and not a list), before planning to criticize the answers. If you
have questions about med's without first analizing symptoms and trying to
understand as clearly as possible what exactly is the most important thing
to be changed in the first place, you make the mistake to try to find out
the strategy without defining the goals.
You are right in saying you are not the only one with these problems. It
would be usefull to discuss this on list.
Now your greatest problem is you are losing your ability to walk. So could
you explain which aspect of walking is deteriorating? Is it freezing or
stiffness or equilibrium or dyskinesias or none of these? Are your troubles
with walking the same during the day, if not can you try to relate the
differnces to your med's intakes.
I am aware of the fact that this mail is not giving any immediate help, but
it is the only advise I have to offer.
Ida
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Vriendelijke Groeten / Kind regards,
Ida Kamphuis mailto: [log in to unmask]
