purple feet for me, too........ no-one seems to know why......

and apathy...... I am asked if I am depressed, as in miserable, when I mention it, but it is a different kind of beast....

Peg, it is so great to hear of doctors who are open and will admit that they don't know everything, they are the ones we pin our hopes on for a day when patients of all kinds are made welcome in decisions that affect them, and they are the ones who can bridge the gap between old school paternalistic medicine and a new paradign - they are the ones who can speak both languages.

Unfortunately they are rare.......

But you are right, stereotyping the medical profession only increases the barriers.....

Lindy

We all noticed that our symptoms varied greatly from one another, and that our experiences with PD seemed different than those described in a textbook. I used to tag after NINDS head Story Landis at PAN Forums asking, "Don't you think PD should be redefined, that it's more than just movement?" and she would look at me befuddled (maybe it was difficult for her to see beyond neurology; a pitfall of our super-specialized western medical perspective).

In 2006 Paula, Peg, Perry, Linda, Tom Isaacs and I were invited to attend a meeting about GDNF at MJFF. I started my remarks by saying that researchers seemed to be studying a disease that we weren't experiencing, that they would be way ahead if they talked to patients on a regular basis, and that PD should be redefined. I was blown away when Katie Hood interrupted me and said, "We are very concerned about that, and agree with you." She was the first person from an org who not only didn't look at me in puzzlement, but immediately understood what I meant, and said they were doing something about it.

True. Some Docs are not well endowed with good Old common sense. Some are down right arrogant. Most are 10 years at least behind research. I dont know if this has been said before as this is a big forum so excuse me if Im repeating things but someone above talked about symptoms of PD not being researched.

Since 2007 its been proven that Dopamine is a neurotransmitter in regulating mood and seeking behaviours that works for PDers because it alters mood and behaviour into dopamine system dominated patterns. Its not as many old neuors still think a movement neurotransmitter. Acetylcholine makes movement

Source National Institute on Drug abuse and psychiatry research.

So with this in mind the potential side effects can vary greatly meaning that its may be hard to say whats PD and whats a side effect.

The problem I see when looking at PD is the meds and their side effects. And yes a neuro has diagnosed me with PD based on very little so i dont believe him and he has prescribed drugs if I want them. Its all way to lassiz fair esp when these drugs are so powerful and addictice

Jak

“Empathy is a complicated emotion, even for mice. On seeing another in pain, a mouse will act as if it itself is also hurting—much more, though, if it knows the first mouse.”

—In “The Tears of Strangers Are Only Water,” a Big Think blog post by David Berreby about research probing the physiology of empathy.

And it is on this site that we get to know the other mice.

Part of the task is to get others in society to know what is going on in the PD mouse-house, so they too, will be able to understand that something is hurting.
And then, the tears of the strangers are no longer dismissed as water.