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On Sun 16 Jan, Bill Innanen wrote:
> PARKINSN friends,
>
> To add a contrary voice to this discussion, as to whether it is
> good/not good to avoid Sinemet early in the progression of PD, let me
> relate my experiences.
>

Well!!!! At last, I am beginning to see a trickle of replies to my post
concerning withholding of Levodopa therapy,  and even a few supporters of
the opposite viewpoint. Keep them coming - This is a very important subject.

To deal with Bill Innanen's comments: Hello Bill,

The main point which you should be concerned about Bill, is not whether
the drugs have been successful in helping with your running; i am sure
that the Requip, at this early stage, can be taken in quantities
sufficient to balance out the PD symptoms, but I am concerned that you
are in danger of mortgaging your future. I am looking backward with 22
years of PD behind me, and I know that this is the only way to get a
proper perspective on the subject.

Consider:

levadopa is capable of controlling your PD symptoms more effectively and
for a longer period of time than the dopamine agonists, or poor old
Amantadine which gets thrown in no matter if it is appropriate.

The so-called side-effects of levodopa are not really 'side effects'  -
they are the result of too much levodopa: simply back off and try a
smaller dose..  I took levodopa for 15 years (by itself), and only then
did I go on to add an agonist to the brew.

The worrying part is that in my view the genuine side-effects of the
agonists beat any levodopa problems hands down: We are talking Falling
asllep at the wheel, Very bad swelling of the ankles, personality
changes, it is horrifying. If as I believe the risk of getting a side
effect increases the longer that you are exposed to the drug, then you
are effectively reversing the story completely, to one which says:-
Dopamine agonists are scary things: delay using them as long as you can

Yes, Agonists have a job to do - a vital one in the later years, as I
know from my 22 years experience, but if you are exposed to them in the
early years, that's it: you have blown that drug off your list, You can
only play these drugs once - I mean that you can only get the benefit once,
like holding back your trump cards until they are needed.

The silliest part about this is the crazy superstition that somehow your
system will 'know' that you have been a good boy and delayed your
levodopa, and will  generously reward you with a clearer path through
the minefield. -- It is utter rubbish ! Actually, I think it was not the
main reason why the supporters of this silly strategy made their pitch -
that was about an observation that under certain circumstances, levadopa
could be made to react with the dopamine IN THE TEST TUBE. In real life,
this reaction has never been detected . When that item failed to stir
people, they dragged out the long term promise of gold in heaven if you be
a good boy. It seems to have attracted far too many neuros, who should
know better - Maybe it appeals to some sadistic quirk  in their nature,
to dangle that levodopa carrot in front of our nose and chant 'you can't
have it yet, , you can't have it yet.'

Sorry to ramble on at you, but the concepts are not easy to see , I am sure
Keep the comments coming - we may make an effect yet!
Regards,

--
Brian Collins  <[log in to unmask]>  (59/39/34)