[reverett123]

http://www.dailymail.co.uk/news/arti...nsvestite.html

Go to comments and educate a bit

[krugen68]

Originally Posted by reverett123

http://www.dailymail.co.uk/news/arti...nsvestite.html

For some reason the UK seems to be way behind the US in warning of the potential life shattering side effects of DAs. Two of the UK forums are currently campaigning for recognition of this danger before the drugs are prescribed.

[Bob Dawson]

I'll stay away from this one !!! Don't want to upset my friends here.

Quote from the article:
"...Two professors of neurology testified on his behalf that his drugs had left him unable to tell right from wrong.
His wife Deborah, 46, also admitted transferring criminal property…
She was said to be unaware of the situation until shortly before his arrest, and initially claimed she had committed the fraud to protect him...."

I know what addiction is like, and I know it can break a strong will.
But this alternative..... Parkinson's and/or its drugs can cause you to be unaware of right or wrong... that is a very dangerous argument to win, in society. How many entrance tickets will they give to people who are, according to the experts, unable to tell the difference between right and wrong?

[krugen68]

Originally Posted by Bob Dawson

I'll stay away from this one !!! Don't want to upset my friends here.

Quote from the article:
"...Two professors of neurology testified on his behalf that his drugs had left him unable to tell right from wrong.
His wife Deborah, 46, also admitted transferring criminal property…
She was said to be unaware of the situation until shortly before his arrest, and initially claimed she had committed the fraud to protect him...."

I know what addiction is like, and I know it can break a strong will.
But this alternative..... Parkinson's and/or its drugs can cause you to be unaware of right or wrong... that is a very dangerous argument to win, in society. How many entrance tickets will they give to people who are, according to the experts, unable to tell the difference between right and wrong?

Well if the powers that be admit to 14 - 15% of problem patients the actuals are probably far higher. I can also see that it works for a lot of people.
The thrust of people's anger appears to be in the pre-warning and monitoring of those taking these drugs.

[tulip girl]

Originally Posted by Bob Dawson

I'll stay away from this one !!! Don't want to upset my friends here.

Quote from the article:
"...Two professors of neurology testified on his behalf that his drugs had left him unable to tell right from wrong.
His wife Deborah, 46, also admitted transferring criminal property…
She was said to be unaware of the situation until shortly before his arrest, and initially claimed she had committed the fraud to protect him...."

I know what addiction is like, and I know it can break a strong will.
But this alternative..... Parkinson's and/or its drugs can cause you to be unaware of right or wrong... that is a very dangerous argument to win, in society. How many entrance tickets will they give to people who are, according to the experts, unable to tell the difference between right and wrong?

Having suffered the OCD effect from DA, never being told of the possibilities of such compulsive behavior until I researched it, confronted my MDS about it who said "oh yeah, a small number of people do have this side effect (DUH), I think DA should be removed from the market..........and we don't even know what the long term effects are yet.
Spending, spending, spending - I knew it was wrong, I just couldn't stop myself. I wonder how many PWP have ruined their lives with these 2 drugs? More than anyone is willing to count but I'll bet my last dollar , it is a way more than a minority.

TG

[Conductor71]

This can ruin lives...it's not about being oversexed or spending too much time on the Internet trying to figure it all about because the medical community has failed you. You want to rely on a medical professional to be responsible enough to warn you, then you realize that they are incapable because they fear prescribing levodopa for you...yes, that is right, there are neurologists who are fearful of levodopa, they will prescribe only agonists and even those, at barely therapeutic doses. This is going on with a friend of mine right now.

So clinically, by default, agonists are the preferred front line med, simply because they do not cause dyskiesia. Never mind any other side effect. "Levodopa Phobia" is alive and kicking. It is just silly beyond words that clinicians are fearful of inducing dyskinesia so they undermedicate, and worse spread the fear and half-truths through patients. L-dopa phobia is so prevalent on the Young Onset site, I can't even bring myself to read the forum any more. In turn, they unleash agonists on trusting, clueless newbs, with no regard of behavioral side effects.

Ironically, it is the agonist that causes dyskinesia if used with levodopa.In my experience and that of other seasoned PWP, monotherapy with Sinemet does not result in dyskinesia; is is the combo of two short acting drugs in the form of levodopa and dopa agonist that wreak havoc. If you take an extended release agonist, no dyskinesia. I think people are also under the wrong impression too that you twist and fidget all the time...not true. It only happens when you have too much dopa going at once. I honestly do not understand how doctors can put so much trust in newer drugs; they have no idea what long terms effects may be and certainly do not want to put patients in position where they may wreck their lives, but this is exactly what they are doing. My friend is barely able to work anymore from motor symptoms and his doctor will not give him Sinemet and has in fact told him next step is DBS. Ummm okay. Dopa agonist directly to DBS. Unbelievable, but true. This is not happening in a developing nation or tropical island, but in the lower 48. If we purportedly have the best health care in the world...I shudder to think what is happening anywhere else.

If clinicians cannot do their jobs appropriately and recklessly over prescribe agonists out of sheer ignorance or irrational fear, then the pharma company needs to step up and do the right thing.

That is my agonist fueled hypomanic opinion.

Laura

[tulip girl]

Laura,
Tell your friend to not walk but RUN from their neuro who is so obviously incompentant and find a MDS. Any reputable DBS program would not agree to do a DBS on anyone who has not taken L/C dopa. One of the qualifiers for DBS is responsivness to sinemet. The other 2 are a state of non dementia ( counting backwards from 100 by 7s - subtract 10 and add 3) and $$$$$$$$$$$.

TG

[Conductor71]

Originally Posted by tulip girl

Laura,
Tell your friend to not walk but RUN from their neuro who is so obviously incompentant and find a MDS. Any reputable DBS program would not agree to do a DBS on anyone who has not taken L/C dopa. One of the qualifiers for DBS is responsivness to sinemet. The other 2 are a state of non dementia ( counting backwards from 100 by 7s - subtract 10 and add 3) and $$$$$$$$$$$.

TG

We had that very same conversation as soon as i heard no sinemet beforehand. I pointed out same that they have to see that you respond to sinemet as gauge of how well you'd do with DBS plus be reasonably sure he has PD. Crazy? Utter incompetence.

[VICTORIALOU]

I just want to express my thanks to all of you who tirelessly are looking for answers and experimenting on yourselves and who share your experiences here. I can really see the energy you all are putting into your search-
it makes me exhausted sometimes, but I really appreciate it.
I have been learning so much reading your entries and sometimes even feel optimistic from other experiences. I am so glad to have a place where we can be really honest about how down we get, or how angry we are and feel less alone with all the crazy unknowns.

Originally Posted by Conductor71

We had that very same conversation as soon as i heard no sinimet beforehand. I pointed out same that they have to see that you respond to sinemet as gauge of how well you'd do with DBS plus be reasonably sure he has PD. Crazy? Utter incompetence.

[shakyjon]

Sadly, it is I who have the ******* neuro who is going to explain to me why he wants to take the more invasive route before Sinemet. Laura, you never have to worry about keeping it anonymous with me, but I still appreciate the courtesy. Sadly, she is right, he's got me on Mirapex at such a low dose, I'm having to take it upon myself to get the dopamine I need in my system by taking an L-tyrosine supplement. The more I talk with Laura, the more convinced I am that I will do Sinemet before dbs. As annoying as another pill is, I'm talking brain surgery, and I don't know how to feel about that. As for you Laura, thanks for looking out for me and making sure I know what kind of ******** my neuro's trying to pull. Luv ya.

Jon