On the MJFF page I discovered an interesting agent that removes the parkinson protein and shows neuroprotection https://www.michaeljfox.org/foundati...p?grant_id=538

The first article I can find about this, was an article published in 2007. We are now almost in 2013. This is 6 years later. I had a look in their pipeline http://www.remynd.com/drug_discovery...ts_in_pipeline. I can see that their are still in preclinical phase with their PD agent. So in 6 years they didnt manage to get in clinical phase. Is this slow development pace normal ?

Also, I read an article saying that their agent would enter the clinic in 2008. How come that didn't happen ?

Welcome to the 21st century clinical neuroscience. I asked these very same questions when first diagnosed three years ago and since a doctor's misinformation contributed to my worsening, I try to stay ahead of the curve on research because I can't trust placing my health in someone else's hands anymore.

To fill in a few blanks. I think on average it takes 7-14 years for a treatment to make it to the patient. Many promising treatments lie fallow because they are not potentially profitable enough. Keeping in mind that it is exorbitantly expensive to see a drug through the pipeline. However it makes you wonder how Methylene Blue, which has shown to be a good treatment for Malaria, has never been formulated into an official treatment when the benefit has been known since 1850. It is NOW just starting clinical trials. Malaria kills millions each year.

Some trials close due to lack of participation.

What really upset me when first diagnosed is the profound lack of basic epidemiology. To that end, The Parkinson Action Network has done a lot to help get a National Registry for Neurodegenerative Disorders off the ground. That means no one has any hard reliable data as to prevalence or incidence of the disease.

May I ask... What sort of misinformation did the doc provide that made you worse? Did he put You on the wrong med?

Arsippe,

My situation only applies if younger tonset and a desire to have a child. My neurologist gave me an "all systems go" in getting pregnant. I discovered from a 2 minute search that my OB-GYN ran on PubMed that in the scant number of women who have PD and get pregnant; the majority permanently worsen. Had I known before the fact, I would have had more choice. This pregnancy was not planned and I had to stop all meds rather quickly and in one month I went from action to essentially being paralyzed from the neck down in bed at night. Everything felt like lead; I could not even lift my arm to pull covers up. Oddly enough I could walk just fine. In six weeks time I went from a Stage 1 to Stage 4 or 5. Talk about scary! BTW I can move in bed at night now but now I must take Sinemet every two hours

The neuro in question even told me I would likely have a PD honeymoon and not need meds at all the 2nd trimester! She said that women with MS should avoid pregnancy. Well, it turns out that pregnancy actually does bring on temporary remission in MS!!! I have trusted no one since then.

In fact, I have a little litmus test I use in choosing a neurologist. I ask about some obscure study and the only correct answer is " I do not know this, but
I will research it". If they cannot admit that they don't have all the answers or are too arrogant to even acknowledge my questions, then I keep looking.

Laura

Hi Laura,
Thank you for posting this. I first began to notice my PD symptoms after the birth of my daughter. Once I was diagnosed I began thinking about the symptoms and realized I'd probably had PD for years, but the symptoms were too mild to think of PD. I believe the pregnancy just depleted my system and definitely worsened the PD - perhaps I could have gone many more years without really noticing the PD. Needless to say, I've decided not to have any more babies! I should also add that I am super grateful for my sweet daughter

Laura, I am totally with you in not trusting your neuro ... Until he or she passes your test. Whatever happened to do no harm. Thanks for sharing your story.