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maybe Sinemet does not work for these people.  After my first dose I
thought, this is great!!  But unfortunately it never helped again, nor did
Comtan, Stalevo, agonists like Mirapex, Requip, etc.  DBS was the only thing
that helped me, but I would certainly take PD meds if they helped.  This is
weird, I know, but true.

Ray

Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
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----- Original Message -----
From: "kbachn" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, February 02, 2008 9:34 AM
Subject: Re: dolphime, when to start treatment


> very well put,  i see so many people in their 60's in my support group who
> are not on Levodopa and they look bad. guess they're trying to fight on
> without levo.  I appreciate that it is a personal choice but then again,
> these people may look back and realise that a long period of their life
> could have been a lot better.......why delay when u are already "old" , do
> you expect to live till 115 and only start taking levodopa at the age of
> 100?
>
> i'm only 40 and been on it for 2.5 yrs... i need to be functional now that
> my other faculties are still relatively in tact IMHO.
>
> btw, gwc - does the sinemet still work for you?
>
> Regards,
>
>
>
> ----- Original Message -----
> From: "gwcmpbll" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Saturday, February 02, 2008 5:03 AM
> Subject: dolphime, when to start treatment
>
>
>> Apparently there are a lot of DR's who still think that you should save
>> carb/levo treatment for later, theory bring that there are just so many
>> doses before the med is no longer effective.  My opinion is that this is
>> hog wash and deprives the patent of quality of life. I agree, that as the
>> Parkinson's goes on, the ever lower carb/levo production of the body
>> makes
>> it much more difficult to properly time the med.'s.I think that it was
>> Brian Collins of England who proved that doses as often as every fifteen
>> minutes could work. this was before extended release and DA's
>> I have had Parkinson's 20 years now and, as the local expert {definition:
>> has been drip under pressure}, I see a stream of people who are getting
>> bad doctoring and bad advice from their neurologist.
>> These patients often turn out to be the kind of people who were taught to
>> give automatic trust to their Dr.  They need to love their Dr.  I try to
>> figure out who is a coward and who is brave. No use to make cowards
>> afraid. Save your talk for those who want to participate in their
>> treatment.
>> I am so opinionated and onry that I have found it best to lirk most of
>> the
>> time. But I met a 82  year old man today who is not being treated.  His
>> wife loves their Dr.  Since he can't drive, because of his eyes ,he goes
>> where he is taken. I would like to see what 3 or 4 10/100 extended
>> release
>> tablets would so for him.  My goodness, the man is 82, give him his
>> med.'s.
>>
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>> gwc
>
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