Joyce: I just found out about the Parkinson List on America Online and threw
out that question about the "on-off" phenomenon because that is the problem
my mother is tring to deal with. She is 82 years old, was diagnosed with PD
a little over four years ago. She is also in a great deal of arthritic pain
and is currently undergoing 2-3 hours a week of physical therapy to maintain
some mobility.
Up until 6
months ago, she was responding very well to PD medication - only a total of
one and one half tablets of Sinemet CR 50/200 per day ( taken at 8 am., l pm
and around 6 pm). In the first year she also had about 8 months of treatment
with Eldepryl - to slow down the disease we were told - but because her
stomach is very sensitive to medications, she discontinued the Eldepryl when
the doctor thought it had basically done its job. She is seeing a
neurologist who sees Parkinsons patients but he is not what you might call a
specialist in PD neurology.
About 6 months ago,
she began experiencing the "on-off periods and upped the Sinemet to a total
of 2 a day, taking l whole pill in the morning and half and half with her
other meals. That seemed to help for a while - so she continued going back
and forth with the dosage every few weeks or so because 2 tablets a day did
result in dyskenesia which she finds very annoying (especially the head
movement). The PD continues to
progress - more muscle rigidity, some drooling, a little difficulty in
swallowing, soft voice, etc. About l month ago, she was having the "on-off"
periods almost every day - some lasting for quite a few hours - so her doctor
added l/2 tablet of regular Sinemet (25/l00) - which she takes with her first
dosage of Sinemet CR. It has helped - especially in the morning - but the
increase in Sinemet is producing the dyskenesia. I should add that she takes
l0 mg of Prozac before retiring - to help her sleep - in this low dosage, we
are told the perception of pain is altered and she can better deal with her
arthritic pain. Also, I'm sure the doctor (not her neurologist but her
rheumatologist) is addressing the mild depression that seems to accompany her
conditions.
The
worst part of the "on-off" which I'm sure you are familiar with, is the
feeling of total exhaustion and shortness of breath. She also complains of a
lot of anxiety especially at this time. The doctor does not seem to have
many answers for us when we ask about diet, best time to take the Sinemet,
the scariness of the "on-off" periods, etc. He tells us and I'm sure he is
correct that PD is treated differently in each patient depending on their
response. But, we would be more comfortable if we had more information. I
do subscribe to the American Parkinson Association's newletter and the
National Parkinson Foundation's Report. But I sincerely feel we can get more
helpful advice from people like yourself who are living with PD every day. I
would appreciate any insight from your experience and trust that this lengthy
letter does not take up too much of your time. Thank you and Take Care!
Cathy
