pdonline research shows research thus far reported by mjff's todd sharer as showing 3 subtypes altho more research needed. as we thought, and this isn't that new, i heard about the two subtypes years ago and that rigidity/bradykinesia is worse on cognition and dementia. and the third type listed by sharer is a "worse prognosis". i saw somewhere in this thread that there is a mixed type. i personally could name people of each subtype after ten years in the community. For example, stitcher doesn't look like she has progressed since i met her. now that she has ceregene, hopefully she will remain stable. but all of my rigid friends are looking bad now [the ones my age who have had it awhile] they are falling with postural and gait involvment, which DBS doesn't help yet altho they are working on one for these symptoms.

there is only one drug that several participants declared a cure, and it seems like the UK had more of them but maybe that's because they were on it for 3 years, - gdnf. they had a different pump catheter that was not approved in the US .so a medtronic was used. ok so maybe they are finding better neurotrophic factors than gdnf. but Amgen also didn't hold to their word on follow up. Shouldn't these people have been followed up for subtypes? Was anything handled correctly in that trial? Now some have died, but their medical records and physicians should be able to group them in those three rather broad areas to see if there is a pattern to the ones that claimed recovery. isn't this just logical? we tried as patients and succeeded in getting follow up conditions of several of the patients on Grassroots Connection. But we weren't familiar with subtypes at the time and didn't ask them that.

with gdnf being pump infused, it was a continuous monthly treatment, not gene therapy. they didn't give it enough time. what a screw up sorry but i still get upset over it..

it's not too late to try to establish whether the gdnf participants who did not have dislodged catheters and found it successful were of a particular subtype. what other treatment has done as well? why not do this before doing another trial? and perhaps they are. but i have yet to hear a cere 120 patient claim to be cured. if i am wrong i'd be happy to be corrected and it sounds like dosing is going to be varied; they were able thru autopsy to do discover delivery problems. i applaud them for sticking with it and seeing the 18 mos [?] improvement...follow up is imperative....Amgen just totally abandoned them.

now apparently no one wants to try the gdnf with the pump infusion because gene therapy is now all the rage. i don't know of anyone claiming anything spectacular with gene therapy trials so far but realize that the field is young. But the gdnf gene therapy trial is now the only human delivery gdnf trial i know of coming up in the US. By the NIH - and including people who have believed in it since before Amgen owned it. Delivery? not sure some new device and gene therapy. This means they don't know what dose, and they can't turn it off.

It just seems logical to study the people in the Amgen trials first. we found many of them all by ourselves.

The subtypes are not cut and dry. i remember the days when my neuro said mine was as slow progressing as he has ever seen. but he drew a horizontal line and then plunged it down a fast moving vertical slant. that drop does come. question is - how much is meds and how much the illness?

everyone is a word wizard.....when the online community is a goldmine.

and they wonder why we think they have no urgency, just a career. prove me wrong, please. i have to issue these challenges - we deserve thoroughness. if we are just going to be abandoned to die, then why should we go thru the torture of a clinical trial with sham surgery first?

we want to trust, why wouldn't we want to trust? but first we need to understand. i'm grateful for pdonline research. as you can see, we are paying attention. hopefully, these are understandable logical questions.

paula

correction: actually we did know about the subtypes mentioned in this thread then, but they were not the issue or receiving the attention that they are today.

launch in 20 min. jets guarding air space are circling and too loud to sleep anyway.