Dear Barb Patterson:
I'm still in the process of learning Internet so haven't gotten into messages
yet - other than reading other member notes.
Am I understanding correctly that you were diagnosed a year ago and that you
and Judy Norris set up and are owners of this Parkinson's Disease Information
Network?
My question re "Unknown" is because the subject PD Digest is TO - BarbYac -
and FROM: Unknown. What does that mean?
I don't understand what the LISTSERVER command "Set Parkinsn Digests" does.
The Parkinson Foundation of Canada has been holding their annual meeting and
conference every year for over 25 years. It is usually a three day affair
with well known PD specialists giving a talk - always a famous neurologist
(like Donald Calne who is head of the movement disorders clinic at UBC in
Vancouver) - and PD clinic coordinators like Susan Calne R.N. who is the be
all end all authority on PD meds - and workshops with experts in Occupational
therapy, physical therapy, neurology nursing, and social work - etc. I
attended the 25th anniversary of PFC in Toronto several years ago, and Ottawa
this past October, as well as a couple of regional meetings in Victoria. It
is a great way to learn. This year the conference is in Montreal.
Information has not been sent out yet, but probably meeting in the fall as
usual. Call PFC in Toronto for newsletter - "NETWORK" - 416-964-1155.
Members get a break on hotel rates, and meals are always special.
About Sinemet: Regular Sinemet peaks too quickly - patients like that
"rush." It doesn't stay up there long before it begins to drop and then you
feel poopy and take the next dose earlier than you should, for many reasons -
you have a meeting to go to - your meeting someone for lunch - for any number
of reasons you want to be your best or don't want someone to "know."
Troubles brew eventually and your old resolve to adhere to the "LESS IS
BEST" code is shot.
Sinemet CR (controlled release) doesn't move very fast - it is slow climbing
up to results and never peaks as high as regular, but it stays up for a long
time. Take it an hour before you have to get up for work and go back to bed
for that hour. When regular Sinemet takers begin their descent at about 10
am you are sailing along pretty comfortably and probably won't begin
deflating until l or 2 p.m. and then only slowly for two or more hours.
I believe the regular Sinemet "blast" is hard on some patients and they get
some weird untoward effects like feeling "wired"
having vivid dreams, hallucinations and dizziness. On the other hand some
patients do well on regular for a few years.
Sinemet CR compared to regular is like a watering can compared to a fire
hose. Which is the more neuroprotective?
No matter which type of Sinemet you start with remember to start low:
12.5/50 at suppertime for a week
" at breakfast and supper for a week
" at breakfast lunch and supper for a week
On the fourth week increase the supper dose to 25/100 and so on until the
sixth week where it is 25/100 three times a day. It really takes more than a
month for the body to adjust to this powerful drug. It makes you nauseated
and you don't see any good results.
Some patients do nicely on 25/l00 twice a day. Make sure you eat something
when you take Sinemet - a couple of Saltines and juice - until the body
adjusts.
Don't forget: Deprenyl potentiates the Sinemet and more levadopa passes the
brain's blood barrier. That might cause a problem of too much L-dopa in some
patients. Some neurologists stop the Deprenyl when Sinemet is started - some
neurologists don't use Deprenyl at all. Some say it slows down progression
of the disease - others say it doesn't. Most agree that it has some
antiparkinson properties and helps with some symptoms. That hies us back to
the fact that it enhances the action of Sinemet, which could be a problem in
some people.
What can I tell you - there is a statistic for everything.
Barbara Yacos
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