Julie Lieberman and everyone:
In response to your comment about using detox therapies, I am checking into
those avenues myself, because I believe my pd was primarily drug triggered and
there still may be residues left, or perhaps additional toxins have also been
added to the mix since.  They gave me some sort of antidote to the compazine,
which almost immediately stopped my severe pd-like reaction.  I'm trying to
find out what it might have been and whether it would help now.  The drug book
we had even said that just one dose could cause recurring reactions later on.
Alot of what I've been reading also points to a possible liver enzyme
deficiency, and therefore, certain people may have difficulty filtering out
toxins on their own and may need additional help to prevent toxic buildup.  I
forwarded to the list here a few weeks ago a story of a man that I had heard
who has used chelation, diet and herbs to delay the time until he required the
standard drugs for 15 YEARS!!  And even at that point, if he continued the
therapy, one could reasonably extrapolate that it would also slow down the
progression even once her were on drugs, so that he could avoid Sinemets side
effects at higher dosages for longer.
 
In my opinion, that's pretty darn incredible, and worthy  of some research.
No, it's not a cure, but neither are the drugs, and he did eventually have to
start taking them.  An extra 15 years without drugs might buy me personally,
enough time to complete my career as I would wish, get married and have a
family, etc.  Besides, the drugs themselves also have side effects that I
would rather avoid as long as possible.  In some ways to me some of them are
worse than the pd, at least right now.  Also, the side effects (twitching,
etc.) of increasing doses of sinemet once the disease has progressed scares
me.  It's like substituting one evil for another at that point, not exactly,
but I still don't like it.
 
Along this vein, while we're on this topic, I would like to voice one
complaint I know is shared by a few others; that is that it seems incredibly
difficult sometimes to get anyone to listen to my thoughts on what may have
caused it for me (the possible link to pesticides and other toxins, the
treatment of pd with alternative methods, success stories of any variety,
history and geographical/cultural/environmental trends in pd, etc.),
especially doctors - no offense, I understand your own pressures and focus on
treatment.  In my field also, aerospace engineering, one has to focus on
certain areas after a point, or one suffers from information overload.
However, I am a systems engineer specifically, with a physics background, and
systems engineering is the field of engineering where you integrate all of the
other areas such as mechanical, thermal, electrical,etc.  I work on designing
satellites, and as a systems engineer I have to know a bit of everthing from
the various areas, and how design changes in one area can affect any of the
others.  Hence my insistence on understanding ALL aspects of this disease,
genetic predispositions, triggers, drug treatment, alternative treatment, any
success stories, disease progression or lack thereof hopefully, and on and on.
 Sometimes I get frustrated on the focus simply on the symptoms and what drug
dosages to take.  Everyone is going to have a different focus, depending on
their stage of the disease, or if they're not a patient, depending on whether
they're a doctor or researcher.  That is one reason I really like this list
because it brings all of the different viewpoints together and that way I
believe we'll make progress quicker.  In my job, I have to help ensure the
different engineering areas communicate so one doesn't go off on a tangent and
end up messing everyone else up, or at least make sure everyone knows what's
going on so they can get their input in.
 
Some of the questions that have been rolling around in my head for a while are
as follows:
1)  Since depression is supposedly on the increase, as a percentage of the
population, and it does have some ties to pd; why is it increasing, and could
the increasing numbers of people on anti-depressants/anti-psychotics partly
explain the increase in young-onset pd (alot of these drugs can cause pd
symptoms - as in my case).
2)  What's the history of  pd?  How long has it been around?  Did it start to
increase with greater life expectancy, or perhaps increase during/after the
industrial revolution and the subsequent pollution of the earth?
3)  Supposedly people of western european descent have a higher rate of MS.
Is that true for PD?  Is it genetics, diet, environment?  Do any native
peoples get it?
4)  What about any cases of remission, including sponteneous & permanent
remission, like in MS?
 
 
These are part of my focus of concern and if anyone has any thoughts, or even
differing opinions, they would be greatly appreciated.  Thanks for your time!
Wendy Tebay
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