Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 03-08-2018, 04:34 PM #1
olsen's Avatar
olsen olsen is offline
Senior Member
 
Join Date: Aug 2006
Posts: 1,860
15 yr Member
olsen olsen is offline
Senior Member
olsen's Avatar
 
Join Date: Aug 2006
Posts: 1,860
15 yr Member
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:
Share Your Opinions
__________________
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
olsen is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
johnt (03-08-2018), VICTORIALOU (04-13-2018)

advertisement
Old 03-08-2018, 08:17 PM #2
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
15 yr Member
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
15 yr Member
Default

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
__________________
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
johnt is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
olsen (03-09-2018)
Old 03-09-2018, 09:13 PM #3
olsen's Avatar
olsen olsen is offline
Senior Member
 
Join Date: Aug 2006
Posts: 1,860
15 yr Member
olsen olsen is offline
Senior Member
olsen's Avatar
 
Join Date: Aug 2006
Posts: 1,860
15 yr Member
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.
__________________
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
olsen is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
johnt (03-10-2018)
Old 03-11-2018, 02:51 PM #4
aftermathman aftermathman is offline
Member
 
Join Date: Sep 2006
Location: Evesham, England
Posts: 598
15 yr Member
aftermathman aftermathman is offline
Member
 
Join Date: Sep 2006
Location: Evesham, England
Posts: 598
15 yr Member
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.
aftermathman is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
johnt (03-12-2018)
Old 03-12-2018, 11:05 AM #5
ashleyk ashleyk is offline
Member
 
Join Date: Oct 2006
Location: New England
Posts: 262
15 yr Member
ashleyk ashleyk is offline
Member
 
Join Date: Oct 2006
Location: New England
Posts: 262
15 yr Member
Default The Duck

I found the duck interesting and informative even if, sometimes, he was abrasive. Hope he's still around. Lift the ban!
ashleyk is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
johnt (03-12-2018)
Old 03-12-2018, 04:23 PM #6
aftermathman aftermathman is offline
Member
 
Join Date: Sep 2006
Location: Evesham, England
Posts: 598
15 yr Member
aftermathman aftermathman is offline
Member
 
Join Date: Sep 2006
Location: Evesham, England
Posts: 598
15 yr Member
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
aftermathman is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
johnt (03-12-2018)
Reply

Tags
activist, efforts, posters, research, thread


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Rednow thread #109..mushed-brain wonder thread CoolAngel26 Survivors of Suicide 21 07-04-2008 12:08 AM
Wonder Thread #96 Doody Survivors of Suicide 25 05-24-2008 09:06 PM
60th Banana bread thread..oops Wonder thread. CoolAngel26 Survivors of Suicide 26 12-06-2007 07:35 PM
Wonder Thread #35 Alffe Survivors of Suicide 23 04-23-2007 10:29 AM


All times are GMT -5. The time now is 01:08 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.