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On Wed 22 Mar, Jim Wiles wrote:
> Hi, has any PWP tried using an agonist such as Pergolide without Levodopa.
> I started the increasing dosage from 0 to 0.75 mgrams as prescribed and have
> subsequently increased the dosage by 0.25 mgrams per week over the last
> month.  I have now reached a total dose of 1.75 mgrams per day and although
> I am getting many of the side affects nausea, dizziness, etc the  benefits
> are missing.  I wonder if I am increasing the dose too fast/slow or is the
> level still too low to give any benefits?  Has anybody successfully used
> agonists without Levodopa ?
>
>
> Cheers Jim
> 59/49/48
>
>
>
hello Jim- are you taking pergolide alone because your neurologist told
you to ?  If so, change your neurologist!! I mean it: Neuros are split on
the subject of using Dopamine agonists alone, so we owe it to ourselves
to adopt what we believe to be true.

My 'Credentials' are : 20 years taking Madopar/Sinemet according to a
schedule which I defined, and for the last 6 years of the 20  , I have
fed in Pergolide as required. (i.e. to counteract the progressive nature
of PD) I find that my requirement is plus 1mg of pergolide per year :
From none 6 yrs ago I have progressed (!!) to 6mg per day.

From what I have been able to collect on the subject, speculation about
the causes of PD, treatment  of PD, and cures for  PD is in reality
controlled by a relatively small group of 'names' : The majority are
milling around in utter confusion like a flock of sheep, because some of
these 'experts' are abusing their position by indulging in a bitter
argument about this specific item. They cannot both be right, so one day
one of these groups is going to be proved wrong, and a lot of sheep are
going to be just standing around looking pretty silly, but more
seriously so are a lot of PWPs who are the real victins of the affair.

Who do I think I am - criticising this saintly bunch of people, and why
should I know better than they what is going on? Well, let's stand back
a bit and consider: At least 99% of a neuro's training is a closed book
to me, and I am lost in admiration at the knowledge that they have, and
I marvel at the sheer number of things that they have to know. I
imagine that a neurologist might feel the same way about my training as a
Mechanical Engineer.

I wonder how much tuition a neuro receives during his training in
prescribing tablets for PWPs? One day? One week? Well I have been
thinking aboutthe same thing for a fair part of every day for the last
20 years.  Match that!

And then there is the one factor which they can never know  - we know
what it is like 'on the inside', and they can only wonder.

Those of you who know mme may be feeling that these tantrums of mine
are becoming more frequent (I'm really quite friendly most of the time).
It is because it is like banging your head on a brick wall, trying to
explain my theories.  If I present it in written form, their eyes glaze
over in about half a page. -I think it is because I use too many words
with only one or two syllables in them, and  they can't understand.
No doubt I have offended some people -I hope not too many- but I would
welcome suggestions as to how to move forward from my present position .

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