Parkinson's Disease Tulip


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Old 03-08-2018, 04:34 PM #1
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Default Old thread related to new thread

The topic of mannitol triggered a memory of the following discussion from 2007! Several of the posters are no longer with us, though their research efforts, their activist efforts and their incredible brain power remain for us to benefit. For all new and old posters:
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Old 03-08-2018, 08:17 PM #2
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What can we do to get back to that level of discussion?

It's not as though the need for informed discussion has gone away: I suspect that back in 2007 people thought that the cure was exactly as far away as we think it is today in 2018.

As I see it, the need for citizen science is as large as ever. In fact, the availability of cheap electronics makes the case for citizen science better than ever.

We need to get ourselves organized.

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 03-09-2018, 09:13 PM #3
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Default level of discussion

I feel whenever we stopped posting reports of studies or new meds or new trials the level of discussion changed dramatically. We no longer shared scientific information. We were directed to access other sites for scientific reports and not clutter up this site with that info. I did not have the time nor inclination to access the other sites, so that information was lost for me. ANd so were the discussions of the information.
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In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices.

~ Jean-Martin Charcot


The future is already here — it's just not very evenly distributed. William Gibson
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Old 03-11-2018, 02:51 PM #4
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Default What a brilliant thread to highlight the ...

hopes and fears of some true giants of the PD activist movement. I was dx'ed on my 40th birthday some 15 years ago and It seems incredible the lack of real progress we have seen in that time both in the search for a cure and speeding up the clinical testing process.

I remember as an ldopa honeymooner thinking, "that was a close one, anyway GDNF / Spheramine or gene therapy will take care of me". How wrong I was, I watched with increasing horror as one after another of my hopes were dashed. Now the cupboard is bare and we don't even have the energy to lie regarding stem cells and the next 5 years.

Just as the hopes for cures have faded so Braintalk2 tried to keep the energy in the pwp world going, special mention for Tom Isaacs (RIP), a real force of nature and true hero. This was the time of the great Poster, people like Paula_w, (see her drug induced posts for the funniest postings in the history of the board), Ron Hutton, Evereitt, Michael7733, peggy, heck even the duck was there as angriest poster ever.

Yet through it all we never really made much difference and this is hard to say. PD remains imho as just a cash cow for big pharma with no real motivation to find anything better than dbs.

Take care,
Neil.
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Old 03-12-2018, 11:05 AM #5
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Default The Duck

I found the duck interesting and informative even if, sometimes, he was abrasive. Hope he's still around. Lift the ban!
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Old 03-12-2018, 04:23 PM #6
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Default Let's hope ...

Quote:
Originally Posted by ashleyk View Post
I found the duck interesting and informative even if, sometimes, he was abrasive. Hope he's still around. Lift the ban!
When I see a post like this it serves to remind how many have gone.

My biggest memory of the duck was a huge slanging match with virtually everyone against him as to whether the brain cells affected by PD are alive, dormant or dead. Think the duck was arguing for dead.

Regards,
Neil
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