Quote:
Originally Posted by budgies
My God Rick - what a frightening thing for you to say - by which I mean the statement "If you have any doubts, you had better go, because she isn't going to die from PD. It is much worse than that."
I've had the pleasure of contact with you before, where you've really helped me with my husband's diagnosis, but the "it is much worse than dying" comment has made me plummet yet again to the depths of despair.
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Rick is being brutally honest. We all decline at different rates and in different ways, but quite frankly, if we make it to the end stages..it isn't pretty. However, don't despair. I am summing up some promising novel treatments out there. Note that the vaccine is the first ever treatment to target the cause of degeneration...that is real progress. I would like to see us channel our sadness, despair, and anger toward the fda in cutting through the bureaucratic crap to shorten the time between laboratory, trial, and clinic to patient.
-There is a vaccine in development that may halt disease and slow it down in in more advanced PWP. IMHO, this is the closest we have to a cure. Affiris in Austria started Phase 1 trial earlier this year. U of Nebraska hope to purse vaccine treatment.
-Ceregene trials starting up again. This is for delivery of neurotrophic growth factor that had as setback due to placebo effect. They have corrected for this and how have received over $2 mill to begin phase 2 trials. Neuturin has potential to restore condition of degenerating neurons, to slow progression, alleviate symptoms, and act as neuroprotective.
Nerologix just released results of their phase 2 trial on restoring GABA levels proving that gene therapy works for neurological disorders. The restored GABA controls symptoms.
We do have some promising things happening....
Laura