Laura said " I won't even let myself think of the fact I have to take pills likely for the rest of my life...it used to drive me to the edge when I realized that I would have to start every day with a pill. Sigh. "

I'm afraid if we (ALL of the PWP's) don't stomp oour foot down and say WE DESERVE BETTER!" then we have no choice for anything beyond the infamous dopamine replacement (or stimulators or enzymatic boosters).

Think about this - we have been letting the medical profession get by with writing an Rx for levodopa and saying "Enjoy your life for the next 20-30 years." That is totally, unequivocally unacceptable! Nobody wants to take on an illness that involves permeating the blood brain barrier, or alters mood, personality, and doesn't have a positive diagnostic test, let alone an etiology!

Oh, shucks! I promised I wouldn't get into this, but I swear - I am thankful we are living longer than people diagnosed with PD did 40 years ago, but with dyskinesia, depression, aches and pains, dystonia, constipation, bladder retention or incontinence (shall I go on with all the side effects?), why are we still saying that's the gold standard?

Until we can find another Michael J. Fox, or Andy Grove - influential people willing to stand up and fight the "accepted treatment of choice" then we are forced to be tied to a medicine bottle or face the consequences - no movement or a poor quality of life. (BIG SIGH!)

So what do we do? (Another BIG sigh)
Peg