^^^^^^WARM GREETINGS  FROM^^^^^^^^^^
Ivan Suzman      48/11                 [log in to unmask]
Portland, Maine   land of lighthouses     43    deg. F  starry starry
night
***********************************************************

On Mon, 20 Apr 1998 12:15:54 EDT Janet313 <[log in to unmask]> writes:
>hi siblings
>
>i need some advice
>or maybe just some 'i've been there and done that' contact

Hello Janet,  here I am!

>i've been taking one half of a 10/100 sinemet tablet every 90 minutes
>[waking hours only]
>[= 600 to 700 mg levodopa daily]
>for over four years with fair sucess

Would taking some "cr" at bedtime, added to your 10/100, extend your
functioning time either during the night or early in the morning?
Also , does the additional carbidopa in 25/100's (yellow round pills)
help you?  I do better on 25/100's-more time "on" and a better quality of
functioning than with the 10/100's.

>as a result of an analysis done with a view to
>maintaining thin but almost continuous levodopa coverage

By "thin" could you mean just barely "on"....and would 25/100's improve
this "thinness"?

>this regimen has generally kept me mobile and 'on'
>with limited 'off' periods
>except those due to excessive protein/fat intake

Even on my best days,  and even with tolcapone, I still get protein and
fatty protein blockages


>and those due to hormonal fluctuations

When I am not on vigil to remain restful, or when I cannot keep my anger
from boiling, I have "fluctuations".

>occasionally
>i have attempted to 'smooth' out the motor fluctuations
>'on' = virtually business as usual
>'off' = can't walk, write, type, etc.
>[= frozen by the kinesia brothers brady- and a-]
>by using sinemet cr
>but end up with severe stomach upset after a day or two

Have you tried ginger ale with cr?  That might help.  Also, I ALWAYS use
cr and 25/100 together, at each and every dose.  cr alone leaves me
slightly undermedicated ("thin"?).

>and dyskinesia which is hard to fine tune away

 I snap even the unscored, "pink footballs" (25/100) cr into two pieces,
and use about 1/2 to 2/3 (50-67 mg) at a time. With WHOLE cr tablets,
dyskinesia is frequent.  I, too, cannot stop dyskinesia, but I can push
it away somewhat by using a little cheese or a tad bit of meat to slow it
down.  Or, 2 ounces of whole milk.

 I almost never have a dyskinesia problem now.  It tends to crop up only
if mty diet is too sugary, or if the tolcapone/sinemet combination hits
me too hard.  My sinemet is down from 1500 to 900 mg./24 hours.

i have used the brand name sinemet levodopa/carbidopa for 10 years
>but since i moved back to canada in december
>i found new medical consultants and established new prescriptions

That must have been hard to do-all those familiar Bermudan faces
gone--all these new Canadian faces to learn how to work with!!
  One wonders if one is making the right choice when one engages a new
person, a new doctor, a  new pharmacist.  This wonderment,  in me,  can
turn to uncertainty, and that can turn to angst.  OR, if patient enough,
this same wonderment can turn to encouragement. and that can turn into a
genuinely elevated mood, once I gain enough experience to bravely work
with the new people.

.
>since then my 'offs' have become 'deeper' - more profound and more
>frequent

You are still adjusting to many new stress factors
.
>e.g. four months ago i was able to shuffle around when 'off'
>but now i'm having trouble even moving one foot forward at all

I am thrilled that you are brave enough to keep trying.to be independent.
 I feel that if you are being troubled by those sticky parkie feet, you
may be under new stresses, and you also may be slightly undermedicated.

>the new monkey wrench in the med equation
>seems to be generic apo canadian made levodopa carbidopa

I use generic carbi-levo.  It is less successful when I am stressed, and
also, it is light-sensitive, so be careful not to leave it exposed to
light.

>i can't attribute my new on-off situation to anything else
>
>my life situation has changed radically

Oh?  Dear sis, you just moved from Bermuda, and surely the radical
changes continue to present challenges throughout your daily routine.
N'est-ce pas?

>this ex-hermit is now living cheek by jowl with a sister and niece
>and participating in 'in your face' family contact
>as a long term proposition for the first time
>ever as an adult
>
>it is stressful at times, joyful at times, certainly a learning
>experience for
>all

And we ALL adjust differently to these new interpersonal forces such as
those your neice and sister present to you.  I find that even with my
best friends, I may function well alone, at times, but poorly when they
are doing normal things like talking on the telephone or watchng TV when
I am in need of silence. At least, for me, there is a compromising
process that takes place, so that they can have a life wihtout my PD
imposing too many restrictions on them.

The GREATEST stress factor for me is multiple-person situations.  And you
have gone from living solo to living in a three-person household..  I
think you probably have done, this, but anyway, in case you haven't,
could you possibly talk to your sis and neice about whatever stress
factors you all are experiencing now that you are with them?  That
conversation should help all of you.

>but i can't connect the circumstances with my med/symptom change

I am a quiet poet, perhaps like you.  But I am not humble enough, and
just  as I need to be a prince at times,
which isn't easy on Jay, perhaps you need to be a queen at times, and you
may not be able to in someone else's dwelling place.

>
>i've done some preliminary digging in re generic sinemet
>but my on times are quite limited now

I feel that they will increase as you accomodate to your new
circumstances, and that pills are not the sole ingredient for you to
focus on.

>as well as my on-line times
>[with the dreaded aol]

I use juno and live more simply than those in aol-land.  Maybe juno is an
answer--it's free e-mail, but no internet and web time.  I guess we all
have to find WHAT WORKS  for  each of us.


>
>my list of unreturned messages is getting long enough
>to give me nightmares


OY!  Oy yoy yoy!!  I hereby give you permission to delete more messages,
and respond to fewer. We all go through periods where working on the
computer has to be put aside for a while, or where it recedes in
inmportance.

>i seem to remember some comments in the past
>in re the effectiveness of generic levodopa
>but not any of the detail


I've tried both, and find there is no difference, except that the generic
ones seem stiffer.  So I chew them more--oh yeah, I almost forgot--I chew
the 25/100's but swallow the partial cr's without chewing at all.


>i would like to determine whether
>the generic is less effective for me than the brand name sinemet
>
>i guess the best way would be to switch back to the brand name med
>if the ontario health system will allow it;

Remember that indentifying stress factors, and trying to modify your
pattern of life, is probably as important as whether you use generic or
brand-name medications.  At least, that's my "take" on the subject.

>i will speak to my doctor about it
>[there is a big price difference between the two
>and i am on a government assisted drug plan]

Be very careful of financial stress factors here
.
>my new neurologist has suggested that i start on tasmar/tolcapone
>to address the motor fluctuations
>[which were already becoming a problem
>long before i switched to generic levodopa]

Tolcapone is a wonderful drug for me.  It takes time.  After two months,
I am finally getting the hang of it. I am using a pill-cutter-Marie
Antoinette would be proud of me.  I guillotine my  100 mg."Tasmar"
tablets into halves and even into quarters.  Usually I take 1/4 (25 mg)
with breakfast, 1/4 in mid-morning, 1/2 at noon with lunch or light
snack, 1/2 with supper, and sometimes 1/4 at bedtime.

It needs lots of water to work and so I make a point of drinking 6 or 8
ounces of water whenever I use it.

>i'm intrigued by the tolcapone possibilities;
>however, i would like to get this current sinemet question sorted out
>before i start mixing any other new ingredients
>into my brain's chemical cocktail

Sounds like a plan! Let us know what you decide.

>any ideas/experience out there
>with 'generic sinemet' vs 'brand name sinemet'?
>
I guess I've covered everything for now.  Please try to consider what new
stress factors affect you in your new life.  Make  SURE you talk about
them when your sis and neice are able to be available to you.

God bless you three and enjoy the beautiful spring in Ontario!   Janet,
are the local tulips budding yet?  In my little front yard, mine are
swelling  up, and the first tinges of red are showing on the green buds.

Here's a cyberhug from me!
  I<<<<<<JP>>>>>>S

>your cyber-sis
>
>janet




>janet paterson
>51/10 - sinemet/selegiline/prozac
>almonte/ontario/canada - [log in to unmask]
>