Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 06-16-2014, 05:04 PM #1
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default Prion Diseases: Madness and Memory

I just read Madness and Memory - The Discovery of Prions - A New Biological Principle of Disease by Nobel Laureate Stanley Prusiner, M.D., published 2014. He gives convincing evidence that PD, AD, ALS, all the neurodegenerative diseases are prion based. A 2011 thread on this site: "Breakthrough! Alpha-synuclein responsible for progression" begins the discussion.

Prions are proteins with no DNA or RNA, not viruses. Simplistically put, they can mis-fold and go rogue, taking over normal proteins and wiping us out. He ends the book with a couple of sobering points: "Once so mysterious, degenerative brain diseases are beginning to reveal the mechanisms by which they compromise nervous system function." and "For the wars on cancer and heart disease there are a myriad of advocates and pipelines filled with hundreds of promising drugs--for neurodegenerative diseases, the ranks and the pipelines are virtually empty."
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
anagirl (06-17-2014), Conductor71 (06-16-2014), johnt (06-18-2014), lab rat (06-17-2014), olsen (06-17-2014), shcg (06-19-2014), soccertese (06-17-2014), Stand Tall (06-19-2014), Theta Z (06-18-2014), Tupelo3 (06-16-2014)

advertisement
Old 06-16-2014, 11:12 PM #2
Conductor71's Avatar
Conductor71 Conductor71 is offline
Senior Member
 
Join Date: Jul 2009
Location: Michigan
Posts: 1,474
10 yr Member
Conductor71 Conductor71 is offline
Senior Member
Conductor71's Avatar
 
Join Date: Jul 2009
Location: Michigan
Posts: 1,474
10 yr Member
Default

Quote:
Originally Posted by Nan Cyclist View Post
He ends the book with a couple of sobering points: "Once so mysterious, degenerative brain diseases are beginning to reveal the mechanisms by which they compromise nervous system function." and "For the wars on cancer and heart disease there are a myriad of advocates and pipelines filled with hundreds of promising drugs--for neurodegenerative diseases, the ranks and the pipelines are virtually empty."
It is sobering to hear a scientist so key to unlocking the mystery of brain disorders basically acknowledge what many patient advocates have felt for some time now. It only reinforces how we would probably make more headway if these diseases were not treated as separate entities but rather on a continuum by both researchers and patients. There needs to be a larger representative foundation focused on neurodegenerative disorders as a group. However, there is little tolerance for reality in patients, I find. If you are not optimistic and inspirational every moment you can be shunned in social groups online. Not going to make any progress unless we can change that dynamic.
Conductor71 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
johnt (06-18-2014), lab rat (06-17-2014), Nan Cyclist (06-17-2014), olsen (06-17-2014), Stand Tall (06-19-2014), Tupelo3 (06-17-2014)
Old 06-17-2014, 02:34 PM #3
pegleg's Avatar
pegleg pegleg is offline
Senior Member
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
pegleg pegleg is offline
Senior Member
pegleg's Avatar
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
Default Thanks!

Thank you, Nan and Laura, for pointing out the truth. And I do believe if the truth were to be picked up by enough people, we would have already found a cure for Parkinson's. The truth is this:

PD DOES NOT HAVE A UNIFIED VOICE!

There is a lot of talk about patient empowerment, but I haven't really seen true patient empowerment. Truly empowered patients (in this case people with PD, which includes caregivers) are given enough power by those holding the purse-stings to take risks. And taking risks is what it takes to make things happen.

This is what occurs in research - someone has a sponsor (it takes money to take risks), then they apply that money to an idea (in research, we call this the hypothesis). When you have a solid hypothesis, then you turn that over to the experts - which would be the medical technologists, the clinicians, the research nurses, the statisticians, the investigating physicians, and last but not least - the patient.

Who knows more about living with PD than the patient and the one who cares for the patient? No one! The PWP is te real expert. I can think of hundreds of trials which would not have gone sour if those reporting the stats would have listened, truly listened to what the patient was saying. Who wants a cure more than the patient? No one!

What can we do about the fragmented organizations that are representing the unified voice of the PWP? Let's start using these forums to brainstorm ideas, point out where we fall short in listening to those who live with the disease, and DEMAND PATIENT EMPOWERMENT!

OK. The ball is in your court. Take the serve and start playing like it's for real or we lose. And after 20 years with this disease and playing advocate the best way I know how, I am ready to try another way of playing this game.

Any suggestions?? Remember, the players are the same. It's just the rules that must change.

Peggy
pegleg is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Conductor71 (06-18-2014), johnt (06-18-2014), Nan Cyclist (06-17-2014), Stand Tall (06-19-2014)
Old 06-17-2014, 04:01 PM #4
Tupelo3 Tupelo3 is offline
Member
 
Join Date: Mar 2013
Location: New Jersey
Posts: 832
10 yr Member
Tupelo3 Tupelo3 is offline
Member
 
Join Date: Mar 2013
Location: New Jersey
Posts: 832
10 yr Member
Default

Quote:
Originally Posted by Conductor71 View Post
It is sobering to hear a scientist so key to unlocking the mystery of brain disorders basically acknowledge what many patient advocates have felt for some time now. It only reinforces how we would probably make more headway if these diseases were not treated as separate entities but rather on a continuum by both researchers and patients. There needs to be a larger representative foundation focused on as a group. However, there is little tolerance for reality in patients, I find. If you are not optimistic and inspirational every moment you can be shunned in social groups online. Not going to make any progress unless we can change that dynamic.
Thanks Laura, you are so right about the need for collaboration among the neurodegenerative disorders groups, foundations, organizations and researchers. Maybe the place to start is collaboration among the patients. If we spoke with one voice, we're likely to get better cooperation from the other entities.

There is some movement in this direction with MJFF. They've partnered with the Alzheimer’s Association and The W. Garfield Weston Foundation to create and fund a new research grant program — Biomarkers Across Neurodegenerative Diseases — that will support initiatives including, but not limited to, those that:
- analyze datasets to test hypotheses related to aging and neurodegenerative disorders;
- seek to identify panels or pathways that may play a role in disease mechanisms, such as around inflammation;
- pursue shared or disparate biochemical markers of disease risk, onset or progression;
- or assess potential commonalities across the disease spectrum, including around other neurological disorders such as Lewy body dementia.

It's a start, although there is still a long way to go......

Last edited by Tupelo3; 06-18-2014 at 09:18 AM.
Tupelo3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Conductor71 (06-18-2014), johnt (06-18-2014)
Old 06-17-2014, 04:27 PM #5
Tupelo3 Tupelo3 is offline
Member
 
Join Date: Mar 2013
Location: New Jersey
Posts: 832
10 yr Member
Tupelo3 Tupelo3 is offline
Member
 
Join Date: Mar 2013
Location: New Jersey
Posts: 832
10 yr Member
Default

Quote:
Originally Posted by pegleg View Post

PD DOES NOT HAVE A UNIFIED VOICE!

There is a lot of talk about patient empowerment, but I haven't really seen true patient empowerment. Truly empowered patients (in this case people with PD, which includes caregivers) are given enough power by those holding the purse-stings to take risks. And taking risks is what it takes to make things happen.

This is what occurs in research - someone has a sponsor (it takes money to take risks), then they apply that money to an idea (in research, we call this the hypothesis). When you have a solid hypothesis, then you turn that over to the experts - which would be the medical technologists, the clinicians, the research nurses, the statisticians, the investigating physicians, and last but not least - the patient.

Who knows more about living with PD than the patient and the one who cares for the patient? No one! The PWP is te real expert. I can think of hundreds of trials which would not have gone sour if those reporting the stats would have listened, truly listened to what the patient was saying. Who wants a cure more than the patient? No one!

What can we do about the fragmented organizations that are representing the unified voice of the PWP? Let's start using these forums to brainstorm ideas, point out where we fall short in listening to those who live with the disease, and DEMAND PATIENT EMPOWERMENT!

Peggy
Peggy, thank you so much for this much needed post. Everything you wrote is spot on correct. There is a lot of lip-service given to patient empowerment or patient-centric, but I see us being used more as show pieces rather than as true partners or advisors. As you have said, we know more about our conditions than any researcher, fund raiser or research sponsor. Yet, as a group, our input is at best, minimal, and at worse, non-existent. What amazes me most is how many truly talented people with PD I've met over the past few years, yet how little this talent is used to help find a cure and better symptomatic relief. Sometimes I get the feeling that all of these other entities are saying "he has a brain disease, get him on a panel or project but make sure he remains quiet".

With regard to research, the best way we can get some more control over our destiny is to control the one thing we have that all these other groups need. VOLUNTEERS. Without our participation, the studies will stall and die. We, collectively, have the ability to decide what research goes forward and what doesn't, because, no matter how much money is raised and offered in sponsorship, without us as volunteers, nothing goes forward. I'm not saying we have to dictate terms where we have no knowledge. What I am suggesting is that EVERY study done on and with PD patients should be first reviewed with a patient advisory committee. We should have input into the need for the research, its design, how volunteers are selected, and HOW VOLUNTEERS ARE TREATED THROUGHOUT THE TRIAL, including reasonable expense reimbursement. Finally, we should have access to results and reports.

You have much more input into the entities we are speaking about than most of us, so I would love to hear some of your thoughts.

Last edited by Tupelo3; 06-17-2014 at 10:35 PM.
Tupelo3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Conductor71 (06-18-2014), johnt (06-18-2014), lab rat (06-17-2014), Nan Cyclist (06-17-2014), pegleg (06-18-2014)
Old 06-18-2014, 10:25 AM #6
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
10 yr Member
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
10 yr Member
Default

Nan Cyclist quotes Prusiner that the drug pipeline for PD is "virtually empty".

Conductor71 writes "It is sobering to hear a scientist so key to unlocking the mystery of brain disorders basically acknowledge what many patient advocates have felt for some time now."

Peggy writes "I am ready to try another way of playing this game. Any suggestions?? Remember, the players are the same. It's just the rules that must change."

Tupelo3 writes "We, collectively, have the ability to decide what research goes forward and what doesn't, because, no matter how much money is raised and offered in sponsorship, without us as volunteers, nothing goes forward."

There seems to me to be something self-contradictory talking about taking control. If we're ready for it, we should just take it.

Aunt Bean took control by growing fava beans. Not fighting for years for a grant and then to delegate the work to some university research group. Who: will most likely publish a paper we can't read, because it's behind a pay-wall; will recommend further research, which most likely won't be done, because it can't be patented; and, if they do make a breakthrough, rather than make the most of what they've got, will most likely make enough tweaks to get patent protection. It will most likely take years getting regulatory approval, coming too late to be of any use for many of us; and, once they've got a patent and get it to market, will most likely be so expensive that many PwP will be unable to afford it.

I think it important that we are not anti-science and not even anti-big science. Big science will need to continue to do the research that does not lend itself to being done by patients (surgery for DBS, for instance) But much research (symptom measurement, exercise, effect of caffeine, etc.) can be done well by PwP.

As I've said so many times before we don't lose our skills as managers, engineers, chemists, programmers and a myriad of other areas the moment we're diagnosed with PD.

Make a start now: take the side-to-side tap test. Repeat daily. Then when you find that some food or activity is having an effect, good or bad, you'll have an objective measurement of the effect. Share that with us.

http://www.parkinsonsmeasurement.org/PDMeasure/

And, I bet, the act of taking control will itself be therapeutic.

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:
badboy99 (06-18-2014), Bogusia (06-18-2014), GerryW (06-18-2014), lab rat (06-19-2014), made it up (06-18-2014), pegleg (06-18-2014), Stand Tall (06-19-2014)
Reply

Thread Tools
Display Modes

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
Prion related diseases buckwheat Lyme Disease, Shingles and Other Microbial Conditions 2 04-24-2013 01:27 PM
TRANSMISSIBLE SPONGIFORM ENCEPHALOPATHY TSE i.e. prion diseases flounder Lyme Disease, Shingles and Other Microbial Conditions 1 01-20-2009 06:01 PM
Prion buckwheat Lyme Disease, Shingles and Other Microbial Conditions 0 01-18-2009 06:30 PM
Single protein plays a major role in prion diseases Stitcher Parkinson's Disease 0 01-23-2007 04:45 PM


All times are GMT -5. The time now is 09:46 AM.

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.