I'm a man not a chemical reaction .....

[anthonyjohnrobinson]

Before I was diagnosed and before computers made it so easy to find information, I knew just the basic facts about my body ... brain? check ... heart? check ... lungs? check ......... and so on.. I didn't know about how the chemicals in my brain worked, I thought the brain just sent electrical signals down the nerves and we did what we were told. Now I know so much more but, frankly my dear I don't give a damn.

The mystery of life has gone, I know so much that falling in love has become a chemical reaction, this is not good. It goes back to the professionals experimenting us, yes we need to know what and why about our medication but too much knowledge is a bad thing. If I take my car to a mechanic I expect them to use their knowledge to fix it, if I wanted to know the in depth workings I'd be the mechanic.

[Hidden]

I am with you here, I made a conscious decision to remain blissfully ignorant about PD, as best as I can. I do not research, trawl web sites, read stuff, I don't. Its not denial, it just doesn't add anything for me. The bottom line is this, its about what happens to me and my ability to cope with it. Its not about what may not happen or will, nor what other people cope /struggle with.... so on that basis I just look after me the best way I can, no assumptions, no expectations, no predictions. I have a sensible view of my future and am planning for that. Kindest C

[jillannf6]

hi colleen and anthony

good stuff ot start my day

htanksk 4 that

lol jIll

i am fully convaersant with my illnesss the PSP but it ha snto phased m eat all

we all hav e to go someitme and i know i may have the "slow" sort 0- no meds to help or hinder

[PatV]

I'm an information junkie -- expert on everything and unable to remember anything. I can explain phenomenon, but can't halt the progression...except through prayer and exercise. Otherwise, I go the denial route. The story of my life actually.. Sometimes it works.

[CJ49 in reply to PatV]

I agree with you there Pat.....Prayer, exercise and a little knowledge, in that order!

[shetawk]

< If I take my car to a mechanic I expect them to use their knowledge to fix it, if I wanted to know the in depth workings I'd be the mechanic.>

But, how do you know they know more than you do about something?

One Indian neuro movement specialist at a U.S.A. facility near D.C. told me she didn't know what Mucuna Pruriens is. I explained that it's an herb, native to India, and used in the East -- Ayurveda/Chinese, etc. medicine for PD.

In the U.S. it's advertised as an aphrodisiac. swansonvitamins.com/SWH119/...

What bothers me is that they don't look for a cause once one dr. diagnoses Idiopathic PD. The catchword is "idiopathic" -- which is -- don't know the origin.

I had to get my own hair analysis and stool test. Found out I have cadmium and too much copper. Got rid of lead and mercury through herbs, neural therapy injections and acupuncture. I've had giarda, which have been sucking nutrients out of and injecting neurotoxins into my body for I don't know how long because I never had a symptom or a previous stool test. Dr. Timmins said in his book that giardia can cause PD because of the neurotoxins.

All of the above and more I've done on my own. Now, I'm seeing an orthomolecular dr. who revised my supplement schedule to include factors to heal nerves and protect me from more varmints (manganese, molybdenum, monolaurin).

I always watch. If you snooze, you lose.

[Conductor71]

I have researched exhaustively on PD to the point that, like Shetawk, I know more than my doctors. The phrase "Knowledge is power" means a lot when you are told you will see nothing but decline and palliative care.

Doctors do not necessarily keep up with all things Parkinson's and when they act like they do then tell you things that have no base in reality and your health permanently declines due to this, you begin to question things. It is a rude awakening to have your obstetrician tell you that PD can worsen with pregnancy after your neuro gave you the green light to get pregnant months before- all that was required was a medical database search. I now feel it absolutely essential to know more than my doctor. There are so many myths about PD that proliferate and our doctors play a role in that if they do not know their stuff.

At the same time, this research I have been obsessed with has given me a haven to not accept this diagnosis and I effectively put my life on hold because of it. I think a good place to be, or at least my sweet spot lies somewhere between Colleen's ignorant bliss and all the time I lost on Pub Med. At some point the research becomes futile if you have near exhausted the few traditional options we have beyond lead wires in our heads. At the same time it can offer up a whole new world of alternative treatments that we would likely never see doctors order in our lifetime. Key is to find a balance by accepting conventional wisdom and challenging the status quo, for me at least.