[paula_w]

I just got an idea but of course no one has to really do it . if we could draw a timeline for our lives...what would be the markers to achieve and when in your own personal life.

CURE TIMELINE: personalized for me - closest is presently GDNF pump infused. It has no adverse effects or events, and it could start at phase II or III.

Gene therapy gaining ground - but many unknowns,just about everything about gene therapy is just now being observed for the first time. Carolyn probably posted this somewhere but says today that Ceregene will have all 51 surgeries completed by mid September I think. We'll have to compare that date with the risk assessment meeting in September. Hopefully, ceregene will slide into home first.

The Cell - our basic little unit - there are so many and we think we can discover a way.

I wish the next generation the best with these fascinating studies. I want pump infused - phase III - GDNF - restarted and Amgen could stand to redeem itself from some shady PR as of late. They won't give it to people for research.

Risks are far fewer than gene therapy. It's even probably less risk than DBS. These researchers are being denied a chance to prove this - and they could make good money - something Amgen lost perspective about.

We have some new information - will share soon. If you aren't interested, please don't write negative responses that say 'give it up". I don't 'give it up because there are too many researchers still working on it. In the case of GDNF, we have clear allies. It's a treatment that should be happening.

XX
paula

[Stitcher]

...on gene therapy, Neurturin (NTN) is that is going to be the answer we all sought from GDNF.

Yes, this could be the placebo effect , but I have received comments from personal observers in my life that my gait is significantly improved and I can feel it, my tremor, while not gone...darn it all...is somewhat improved (will see what the blinded rater says in mid-Sept at my 3-month eval ), my finger-to-thumb-tap is significantly improved, my hand open/close is significantly improved. How is this a only only eight-weeks post op!! If I remember correctly, Phase I patients saw 38% improvement at the fourth week...could be wrong, of course.

So, for those who are tracking gene therapy...watch for the beginning of Phase III in 2009. The Phase II data won't begin collection and analysis until late 2008...one year after the last Phase II surgery is completed.

Keep the light on , giving up hope now equates to giving up hope for those that follow behind us "oldtimers" (18 years here.) The may have sunk, but as Norman Vincent Peale said, "Lots of people limit their possibilities by giving up easily. Never tell yourself this is too much for me. It's no use. I can't go on. If you do you're licked, and by your own thinking too. Keep believing and keep on keeping on."

[Maureen]

I love your spirit Carolyn. Thank you for all you do here. I hope you keep getting better and better.
Maureen

[paula_w]

Carolyn I hope, too, that you keep getting better. It's good news for us all and the fact that they are moving quickly scores even more points for a company trying to run a trial as quickly and successfully as possible.

[jeanb]

Carolyn

thanks for the timeline - so 2009 is the time to look for the phase III Cere trial - that's good to know. And thank you for your health update - most encouraging and exciting to hear. Yes perhaps NTN is the answer that we all sought from GDNF.

[paula_w]

Here's the point for some of us....2009 is two years away. That's for phase III. Much more work to do after that. By the time NTN is on the market, some of us will die. Yesterday we grieved for a 32 year old.

This isn't about how positive one can sound and shooting thank you darts. It's about life and death and the injustice of it all.

GDNF could have been on the market and sometimes staying positive is asking a bit too much. Today could be one of those days for me.

It goes without saying that I have the highest hopes for a successful outcome of the ceregene trial. I also have faith in miracles....and don't like the words 'give up'.

paula

[oyster]

paula and carolyn, i am one of the newcomers that hang on to your every word. your experiences and observations ore vital to me. i think of how diferent my view is from that of a pwp dxd 20 years aago. i have quite a range of theerapies to consider. ldopa. carbidopa. agonists. anticholerginics. exercise. speech therapy. diet. iv glutathione. curcumin. coq10. dbs. ablative surgeries. a-l-cystene. a-l-carnitine. support groups. patient advocacy. yopa. internet forums. internet libraries and journals.videos. dvds. etc.......

wow!


the amgen thing makes frustrated and bitter so i cant imagine how it makes you feel. so i realy want to here how you are doing carolyn, and its great you are recovering so well and even seeing a change.

thank you thank you thank you

[paula_w]

Oyster - don't let Rick see that you left out Ginseng!

lol
paula

[reverett123]

Left out ginseng, indeed!

That post did bring up an idea though. Any support for a thread along the lines of "What worked the best for me." to help folks decide what to try?

[jeanb]

I hope with all my heart that GDNF becomes available to you, Paula, and to all PWP. It sounds like you are privy to information not available to the general public, and if you have some knowledge that gives you hope that we will get GDNF, then I am thrilled for you and all of us who face PD every minute of every day.

About sounding positive - I do my best to do that because it's either that or lay in bed with a pillow over my head. (and I've done my share of that, too)

I have a father with Alzheimers and a mother with heart condition. My older brother died at age 15, and I have PD. I dread the day my father no longer knows me. I am my parents sole support. Am I angry and bitter about how my life has turned out? You bet! This isn't the way it was supposed to happen. But I do my best not to dwell on that, and try to face every day with a positive attitude.

About Ceregene and Phase III in 2009 - yes, it's a long ways away. But we all had the opportunity to join the Phase II trial. Carolyn and Dottie and Todd from this forum made that choice. Since I didn't make that choice, I prefer not to complain about the time it takes to get to the Phase III trial. That's the nature of our system and also of having so few PWP who join clinical trials. It just takes too long.

We each face life's challenges the best way we know how. I can only speak for myself when I say that being positive helps me deal with PD and the rest.

This is not a judgment on anyone else's decisions. We all face our battles from a different perspective. I wish everyone hope and good health - now and in the future.

Originally Posted by paula_w

Here's the point for some of us....2009 is two years away. That's for phase III. Much more work to do after that. By the time NTN is on the market, some of us will die. Yesterday we grieved for a 32 year old.

This isn't about how positive one can sound and shooting thank you darts. It's about life and death and the injustice of it all.

GDNF could have been on the market and sometimes staying positive is asking a bit too much. Today could be one of those days for me.

It goes without saying that I have the highest hopes for a successful outcome of the ceregene trial. I also have faith in miracles....and don't like the words 'give up'.

paula