[Tupelo3]

DBS as an early stage, first line treatment. It will be very interesting to follow the results of this study.


A long-term Vanderbilt University Medical Center study of deep brain stimulation (DBS) in early stage Parkinson’s disease has received approval from the Food and Drug Administration (FDA) to continue in a pivotal, phase III, large-scale safety and efficacy trial. Approximately 350 patients will be recruited at 15 academic medical centers in the U.S. and Europe for this Vanderbilt-led study.

“Our hypothesis is that patients who have DBS applied in the very early stage of Parkinson’s disease will do much better in quality of life and motor function and have delayed onset of disability and medication-associated complications. Expanding the trial will help test that hypothesis.”

“We believe strongly and have always been working from the controversial point of view that DBS and medication is better than medication alone,” Charles said.

With an estimated 50 percent of dopamine-producing cells already degenerated when a patient first shows symptoms, time is of the essence in applying any therapy that may slow the progression of Parkinson’s. "Half the cells you are trying to save are already gone the day you make the diagnosis. We stand behind early DBS because we believe the treatment could stave off the loss of more of those cells,” Charles said.

http://www.elkvalleytimes.com/?p=27809

[d0gma]

I just wonder at the complications, deaths, disabling strokes, surgical complications that will happen to largely still functional healthy working people. Surgery is not without risk. There is absolutely no hard evidence that surgery is in any way protective. Surgery does not cure PD. It may alleviate the need to take some meds thereby reducing the occurrence of dyskinesia. Honestly how does zapping the brain with electricity stop the progression of PD. The answer is it does not or it would have already jumped glaringly out of the background.

Brain surgery that can kill you should not be a preventative therapy. This sounds like a vehicle used by docs who want to publish and hone their skill and or fill their pockets. Risk must be weighed against benefit. In many cases PD can ONLY BE DIAGNOSED with progression. If you don't allow time for progression in order to make the BEST diagnosis the odds that you do surgery on a perfectly healthy brain go up. I was told the same thing 13 years ago (GET SURGERY NOW-protect yourself). Not only did I not progress I was misdiagnosed. Thank goodness I didn't let them cut open my head.

13 years later the wording is still the same to the letter. It "may" protect you. Well Cheerios "may help" lower cholesterol too but they can't prove it so they can't say it DOES. I get that we are working for a cure but using people as guinea pigs is just wrong. If you allow someone that makes a living cutting brains to drive the train you'll end up with unnecessary surgery, unnecessary dead people, and unnecessary damage. There is not true impartiality in this instance. None of these docs are getting surgery themselves to ward off getting PD. When that happens I might think there is something to it.

Logically I cannot believe that electric stimulation could possibly stop cell death or processes in such a narrow, specific, and targeted way. It makes no sense and has no application of protection in medical literature for any condition. More likely it will affect the entire brain and body in ways nobody has imagined. There is no way to isolate or target just PD affected physiology.

It may protect but more likely it may do a million other things that nobody will understand until we place people's dead brains under microscopes. I have yet to see any research or support for this hypothesis that is solidly grounded in science. The longer we all wait the better the technology and procedures will be. Why jump on the rickety wagon now-wait for the bullet train.

Originally Posted by Tupelo3

DBS as an early stage, first line treatment. It will be very interesting to follow the results of this study.


A long-term Vanderbilt University Medical Center study of deep brain stimulation (DBS) in early stage Parkinson’s disease has received approval from the Food and Drug Administration (FDA) to continue in a pivotal, phase III, large-scale safety and efficacy trial. Approximately 350 patients will be recruited at 15 academic medical centers in the U.S. and Europe for this Vanderbilt-led study.

“Our hypothesis is that patients who have DBS applied in the very early stage of Parkinson’s disease will do much better in quality of life and motor function and have delayed onset of disability and medication-associated complications. Expanding the trial will help test that hypothesis.”

“We believe strongly and have always been working from the controversial point of view that DBS and medication is better than medication alone,” Charles said.

With an estimated 50 percent of dopamine-producing cells already degenerated when a patient first shows symptoms, time is of the essence in applying any therapy that may slow the progression of Parkinson’s. "Half the cells you are trying to save are already gone the day you make the diagnosis. We stand behind early DBS because we believe the treatment could stave off the loss of more of those cells,” Charles said.

http://www.elkvalleytimes.com/?p=27809

[soccertese]

DOGMA,
please don't make statements you can't support and i would strongly appreciate your're doing a little more research before you post your very strong opinions. i had 2 MDS's tell me they were pretty sure i had PD when they first saw me sitting and before my exam. my GP was shocked i was diagnosed with pd, we were playing soccer together so he saw me running, etc. i asked my MDS what the chance was he was wrong and how many patients similar to me he had diagnosed, at that time i was a very active, very fit 48 year old with no obvious tremor and thinking at the worst i had a pinched nerve, his answer was 5% and he said at least 1000 patients. so a good MDS seems to be able to diagnose pd well before major symptoms present.

i'm not going to defend DBS but there is some evidence it might stimulate stem cells to grow or migrate around the tip area where the electrode is placed, they;ve seen this either when an electrode is removed or maybe autopsy or both.

we can all learn from your're experience being misdiagnosed with pd but i'm an adult who has had pd for 12 years and i wish i was back at the progression level i was at at even 9 years. could i have qualified for a dbs 3 years ago or at all, dunno. but i sure would have liked to know at 5 years after diagnosis if a DBS could signficantly slow progression knowing what 12 years is like.

you think any pd trial wants people who don't have pd? i don't. you might be right and this trial might be a waste but i would do a lot more internet research than you have before offering up an opinion. thank god there were volunteers years ago who had sham and real DBS's, to many advanced pd'ers it has given them back their lives.

going off on a tirade against sinemet, dbs only helps you imho. think about it.

[d0gma]

SoccerT I can support.....ECT is widely used to affect memory. I figured everyone with teeth knew about ECT. If not you look it up. If you're going to blanket criticize with no support or documents then PROVE YOUR point. Lazy asking me to do so.

You are not qualified to censure anybody. I have my opinion you have yours. I don't criticize yours....leave mine alone. Actually i see no back up or documentation for your opinion EVER. I have given documentation for all of my opinions. You don't get to be queen or king or whatever. Do I need to google ECT for you to prove electricity drastically alters the human brain?

*admin edit*

.

Originally Posted by soccertese

DOGMA,
please don't make statements you can't support and i would strongly appreciate your're doing a little more research before you post your very strong opinions. i had 2 MDS's tell me they were pretty sure i had PD when they first saw me sitting and before my exam. my GP was shocked i was diagnosed with pd, we were playing soccer together so he saw me running, etc. i asked my MDS what the chance was he was wrong and how many patients similar to me he had diagnosed, at that time i was a very active, very fit 48 year old with no obvious tremor and thinking at the worst i had a pinched nerve, his answer was 5% and he said at least 1000 patients. so a good MDS seems to be able to diagnose pd well before major symptoms present.

i'm not going to defend DBS but there is some evidence it might stimulate stem cells to grow or migrate around the tip area where the electrode is placed, they;ve seen this either when an electrode is removed or maybe autopsy or both.

we can all learn from your're experience being misdiagnosed with pd but i'm an adult who has had pd for 12 years and i wish i was back at the progression level i was at at even 9 years. could i have qualified for a dbs 3 years ago or at all, dunno. but i sure would have liked to know at 5 years after diagnosis if a DBS could signficantly slow progression knowing what 12 years is like.

you think any pd trial wants people who don't have pd? i don't. you might be right and this trial might be a waste but i would do a lot more internet research than you have before offering up an opinion. thank god there were volunteers years ago who had sham and real DBS's, to many advanced pd'ers it has given them back their lives.

going off on a tirade against sinemet, dbs only helps you imho. think about it.

[d0gma]

I would strongly appreciate you confining your opinion to yourself and do your own research. You haven't posted any wrt this topic. Do your own work and disprove the facts of my life bc that's all I have written. And I did post the support if you read. Back off.

Originally Posted by soccertese

DOGMA,
please don't make statements you can't support and i would strongly appreciate your're doing a little more research before you post your very strong opinions. i had 2 MDS's tell me they were pretty sure i had PD when they first saw me sitting and before my exam. my GP was shocked i was diagnosed with pd, we were playing soccer together so he saw me running, etc. i asked my MDS what the chance was he was wrong and how many patients similar to me he had diagnosed, at that time i was a very active, very fit 48 year old with no obvious tremor and thinking at the worst i had a pinched nerve, his answer was 5% and he said at least 1000 patients. so a good MDS seems to be able to diagnose pd well before major symptoms present.

i'm not going to defend DBS but there is some evidence it might stimulate stem cells to grow or migrate around the tip area where the electrode is placed, they;ve seen this either when an electrode is removed or maybe autopsy or both.

we can all learn from your're experience being misdiagnosed with pd but i'm an adult who has had pd for 12 years and i wish i was back at the progression level i was at at even 9 years. could i have qualified for a dbs 3 years ago or at all, dunno. but i sure would have liked to know at 5 years after diagnosis if a DBS could signficantly slow progression knowing what 12 years is like.

you think any pd trial wants people who don't have pd? i don't. you might be right and this trial might be a waste but i would do a lot more internet research than you have before offering up an opinion. thank god there were volunteers years ago who had sham and real DBS's, to many advanced pd'ers it has given them back their lives.

going off on a tirade against sinemet, dbs only helps you imho. think about it.

[d0gma]

thanks for saying i have strong opinions. i thought so too.

Originally Posted by soccertese

DOGMA,
please don't make statements you can't support and i would strongly appreciate your're doing a little more research before you post your very strong opinions. i had 2 MDS's tell me they were pretty sure i had PD when they first saw me sitting and before my exam. my GP was shocked i was diagnosed with pd, we were playing soccer together so he saw me running, etc. i asked my MDS what the chance was he was wrong and how many patients similar to me he had diagnosed, at that time i was a very active, very fit 48 year old with no obvious tremor and thinking at the worst i had a pinched nerve, his answer was 5% and he said at least 1000 patients. so a good MDS seems to be able to diagnose pd well before major symptoms present.

i'm not going to defend DBS but there is some evidence it might stimulate stem cells to grow or migrate around the tip area where the electrode is placed, they;ve seen this either when an electrode is removed or maybe autopsy or both.

we can all learn from your're experience being misdiagnosed with pd but i'm an adult who has had pd for 12 years and i wish i was back at the progression level i was at at even 9 years. could i have qualified for a dbs 3 years ago or at all, dunno. but i sure would have liked to know at 5 years after diagnosis if a DBS could signficantly slow progression knowing what 12 years is like.

you think any pd trial wants people who don't have pd? i don't. you might be right and this trial might be a waste but i would do a lot more internet research than you have before offering up an opinion. thank god there were volunteers years ago who had sham and real DBS's, to many advanced pd'ers it has given them back their lives.

going off on a tirade against sinemet, dbs only helps you imho. think about it.

[soccertese]

i have a rule i follow when posting here which is never post any info about pd that i present as a "fact" that i haven't thoroughly researched and if i'm not sure i clearly state that. you seem to post information as "fact" that supports your opinions and cherry pick the supporting evidence. just my opinion.

i think i supply more backup in general than most posters. as far as l-dopa, dyskinesias and pd meds in general, any book on pd backs up what i say. i think i've established a certain level of credibility here over the years where i don't have to document every statement i make.

i post on your threads because i strongly disagree with your opinions and think some of what you are posting is wrong. and honestly, i doubt if i documented what i said it would make any difference to you.

just google dupdopa, i'm sure you'll quickly find a discussion of why a maintaining a constant level of l-dopa greatly reduces dyskinesia. dyskinesias can occur taking agonists. and when people on the dupdopa pump switch back to oral l-dopa they have a honeymoon period with less dyskinesias.

regardless of what specifics we disagree on, my basic point is you are posting opinion as fact and i'll comment on that anytime i see it.

here's a reference that discusses dyskinesias and the pluses/minuses of agonists vs sinemet.
http://www.hindawi.com/journals/pd/2012/745947/

i'm not sure why you brought up ECT, ELECTROCONVULSIVE THERAPY, that's not DBS.

and i found your statement that progression is needed to diagnose pd and therefore DBS should only be done on advanced pd'ers as very strange since so much work is being done on finding biomarkers and other non-movement signs such as lewy bodies outside the brain, smell, hearing, speech, etc. to detect pd as early as possible.

[soccertese]

i tried mirapex and requip, both caused too much drowsiness so i switched to sinemet. neuopro and azilect weren't available back then.

[d0gma]

I'm trying to figure out what exactly you are arguing about. I have only stated that people need to make educated decisions. I pointed out the undeniable fact that ld has limited efficacy and that it did in me and does in others cause dyskinesia and dystonia. I urged people to ask questions and be aware of risks. *admin edit*

I never said ld was bad or don't take it. Show me!
I never said DBS was for advanced cases only. Show me!
What fact are you claiming was an opinion? You never say you just accuse.

*admin edit*



Thanks for noting my opinion is strong. I think so too. This begs the question tho, if u think strong opinions are bad is yours weak? Are people wrong automatically if their opinion is strong? I don't get the logic here. A strong opinion is bad? *admin edit*. We all have a constitutionally protected right to an opinion....this is the US. You are the only one presuming you opinion is better than anybody else's.

Originally Posted by soccertese

i have a rule i follow when posting here which is never post any info about pd that i present as a "fact" that i haven't thoroughly researched and if i'm not sure i clearly state that. you seem to post information as "fact" that supports your opinions and cherry pick the supporting evidence. just my opinion.
WHAT FACTS?. You never say.

i think i supply more backup in general than most posters. as far as l-dopa, dyskinesias and pd meds in general, any book on pd backs up what i say. i think i've established a certain level of credibility here over the years where i don't have to document every statement i make.
Nannananna booboo. Seriously are you 10 years old?

i post on your threads because i strongly disagree with your opinions and think some of what you are posting is wrong. and honestly, i doubt if i documented what i said it would make any difference to you.
WHAT OPINIONS? You don't say. Just misquote and whine.


just google dupdopa, i'm sure you'll quickly find a discussion of why a maintaining a constant level of l-dopa greatly reduces dyskinesia. dyskinesias can occur taking agonists. and when people on the dupdopa pump switch back to oral l-dopa they have a honeymoon period with less dyskinesias.

Ok fine what's the argument....I never talked about agonists except that they were there. You,are arguing with urself here. Thanks for proving my point tho. Ld does cause dyskinesia or this wouldn't work.


regardless of what specifics we disagree on, my basic point is you are posting opinion as fact and i'll comment on that anytime i see it.
What opinion? You are not even bothering to misquote now. Just fabricating air. You disagree with everything and never make you point? Petty childish vendetta is so silly as to not even be irritating. Just ridiculous.

here's a reference that discusses dyskinesias and the pluses/minuses of agonists vs sinemet.
http://www.hindawi.com/journals/pd/2012/745947/
So what, I never discussed agonists. You are making stuff up here to argue about that I never spoke about.


i'm not sure why you brought up ECT, ELECTROCONVULSIVE THERAPY, that's not DBS.
Bc it's electricity, obv not DBS. I made a point only that we know very little about how electricity affects the brain. We certainly can't totally confine it and we don't know what else DBS is doing.

and i found your statement that progression is needed to diagnose pd and therefore DBS should only be done on advanced pd'ers as very strange since so much work is being done on finding biomarkers and other non-movement signs such as lewy bodies outside the brain, smell, hearing, speech, etc. to detect pd as early as possible.

This isn't even a coherent statement. Never said that it should only be done on advanced cases....just advised caution. Are you arguing about that? You say much work is being done. You are right that it is in progress NOT DONE. Therefore correct dx still requires a constellation of collaborative data including progression. There is PD that doesn't progress. How else would you dx that except to wait and observe? Why is my statement strange? Are people not being observed over time? Do you go back to ur doc? Does he do a neuro exam and track ur progress? You are very confused I think. Just arguing to argue and making urself look silly. Maybe ur bullying out of embarassment.

[d0gma]

Yes I currently am on azilect and it's doing okay for me as I am decreasing sinemet. It allows me some stability across the day when the sinemet ebbs and flows. I tried mirapex and requip and had horrible side effects with OCD shopping. I also tried amantadine which dried me out so badly that I had ulcerated corneas. I read about some others this happened to. Too bad it didn't work Bc it seemed to be a good idea. I also took selegeline without much effect.

In hind sight none of the agonists alone worked since I didn't have PD. the azilect works now because I live in constant withdrawal while stepping down. Azilect allows me to take less sinemet and not suffer withdrawals as severely.

Originally Posted by soccertese

i tried mirapex and requip, both caused too much drowsiness so i switched to sinemet. neuopro and azilect weren't available back then.

Originally Posted by soccertese

i tried mirapex and requip, both caused too much drowsiness so i switched to sinemet. neuopro and azilect weren't available back then.