[aftermathman]

so as not to distract from the tribute thread to Rick I have kept this seperate.

Rick posted this comment on 17th January this year :

"Starting about 6:00 AM and every two hrs until 10:00 PM I take one standard plus one cr or about 250 mg total. That adds up to about 2000 per day. Occasional dk (once month avg) but with cause (i.e. extra meds). Three years now and have reduced overall".

We all battle to balance brain and levadopa versus side effects, Rick's personal battle shows how difficult this can be and how high the stakes can become.

You are missed big man,
Neil.

[pegleg]

Your inspiring words moved me. People like Rick kept me focused we don't know or need to know why, we just want him to know we understand.
And that's what makes it hurt so much

Thanks, Rick.

Peg

[Bob Dawson]

Originally Posted by aftermathman

Rick posted this comment on 17th January this year :

"Starting about 6:00 AM and every two hrs until 10:00 PM I take one standard plus one cr or about 250 mg total. That adds up to about 2000 per day. Occasional dk (once month avg) but with cause (i.e. extra meds). Three years now and have reduced overall".

On Feb. 28, 2014, Rick said:

“... It is so heartbreaking to see hopes dashed. I have been getting glimpses of the future myself from time to time and don't like it a damn bit. One of the things that we don't like to do is to dredge into the archives of the old-timers such as PIENO going back 20 years or so and realizing that those people said much the same things as we do or did. Sobering.

I am not going to hold out false hope for you. Sometimes even kindness is cruel. I just checked and the cupboard is low on things that may help particularly once the polypharms begin their dance. The cupboard may be low but there is always a place at the table. We share what we have.”
-Rick
________________

[soccertese]

to be perfectly honest, i think rick was an interesting and knowledgeable poster and he added to the board. but for me, there is no general sinemet warning here since we really don't know what he was taking and whether it hastened his death, that is pure speculation and i've never read any study specifically linking lowered life span to sinemet - to pd, absolutely. sinemet allows us to live longer, imagine not having it.
i only say this because i'd hate to see someone avoid sinemet based on what is being posted on this thread.

[badboy99]

Originally Posted by soccertese

to be perfectly honest, i think rick was an interesting and knowledgeable poster and he added to the board. but for me, there is no general sinemet warning here since we really don't know what he was taking and whether it hastened his death, that is pure speculation and i've never read any study specifically linking lowered life span to sinemet - to pd, absolutely. sinemet allows us to live longer, imagine not having it.
i only say this because i'd hate to see someone avoid sinemet based on what is being posted on this thread.

Wanda clearly stated: The hallucinations, mild at first, became more intense. She clearly thinks these were effects of the sinemet and besides the hallucinations, Rick was his normal self. She also believes that sinemet is the reason he took his own life March 6th 2014.http://neurotalk.psychcentral.com/thread204072-2.html

[aftermathman]

Originally Posted by soccertese

to be perfectly honest, i think rick was an interesting and knowledgeable poster and he added to the board. but for me, there is no general sinemet warning here since we really don't know what he was taking and whether it hastened his death, that is pure speculation and i've never read any study specifically linking lowered life span to sinemet - to pd, absolutely. sinemet allows us to live longer, imagine not having it.
i only say this because i'd hate to see someone avoid sinemet based on what is being posted on this thread.

which part of :

"Wanda talked about him having mild hallucinations and how Rick would shake his head in disbelief and say how sinemet will do him in someday".

"The hallucinations, mild at first, became more intense. She clearly thinks these were effects of the sinemet and besides the hallucinations, Rick was his normal self. She also believes that sinemet is the reason he took his own life March 6th 2014."

do you not see as a general Sinemet warning.

I am not a Neuro, neither are you (I assume) and as such I agree that we are not qualified to offer definitive advise concerning Sinemet dosage.

However we both have PD and we both take Sinemet (or equivalent), and as such we are both qualified to comment on the impact of PD drugs on ourselves and other PWP.

My comment from Rick's death:

respect Sinemet dosage, respect the benefits of Sinemet but be aware of the dark side of Sinemet, and always discuss your dosage with a professional before making significant dosage alterations.

If this cautionary approach helps just one PWP then the message from Rick will not have been for nothing.

Take care,
Neil.

[lindylanka]

Hallucinations are well documented as a late stage part of PD, and that knowledge predates the use of levodopa. Rick had been suffering from unpredictable off times, and probably would have considered himself late stage. Sadly I think it was PD, though sinemet is of course a co-factor for any long term user, it's such a potent medication with such side effects that it can be hard to tell whether it is medication or disease that trigger events.

This may be less evident to people who started taking it after doctors got wise to the damaging effects of high doses. In recent years they have advised newer patients to stay below certain levels, it was not always this way, as many older members of the forums know. Still it is the best we currently have in terms of drugs. Advances in the role of exercise have been an eye opener, but came rather late for some of us.

Thank you, Bob Dawson, for the reminder of what Rick posted earlier this year, with hindsight there were intimations there, but it was also a forward looking post, and a reminder of the wealth of experience in the archives. We have a little left of Braintalk on the Wayback Machine, if it had of been intact what a record that would have made, of the true long term impact of PD. We tiptoe round the realities, but this surely is why we raise awareness, that PD is much more than most of us want others to see.

It is devastating when we lose one of the potent 'voices in the dark' who become a part of our mutual support system, and companions on our journey. I've been totally unable to voice my sadness over losing Rick in my day to day life, people wouldn't understand why or how a person I never got to meet became so important to me.

Lindy

[soccertese]

Originally Posted by aftermathman

which part of :

"Wanda talked about him having mild hallucinations and how Rick would shake his head in disbelief and say how sinemet will do him in someday".

"The hallucinations, mild at first, became more intense. She clearly thinks these were effects of the sinemet and besides the hallucinations, Rick was his normal self. She also believes that sinemet is the reason he took his own life March 6th 2014."

do you not see as a general Sinemet warning.

I am not a Neuro, neither are you (I assume) and as such I agree that we are not qualified to offer definitive advise concerning Sinemet dosage.

However we both have PD and we both take Sinemet (or equivalent), and as such we are both qualified to comment on the impact of PD drugs on ourselves and other PWP.

My comment from Rick's death:

respect Sinemet dosage, respect the benefits of Sinemet but be aware of the dark side of Sinemet, and always discuss your dosage with a professional before making significant dosage alterations.

If this cautionary approach helps just one PWP then the message from Rick will not have been for nothing.

Take care,
Neil.

I apologize, I absolutely agree with your points. Know the side affects and consult with your doctor.

[boann]

Originally Posted by lindylanka

Hallucinations are well documented as a late stage part of PD, and that knowledge predates the use of levodopa.

Hi Lindy,

I hope you’re well! As part of my amateur research article on what I called side effect creep, I didn’t find any references to hallucinations in Parkinson’s prior to the introduction of levodopa.

I’m considering undertaking the same research, only this time doing it in a scientifically rigorous fashion, and I don’t want to miss anything that might be out there.

Can you direct me to the research you refer to above?

Thank you!

[lindylanka]

Originally Posted by boann

Hi Lindy,

I hope you’re well! As part of my amateur research article on what I called side effect creep, I didn’t find any references to hallucinations in Parkinson’s prior to the introduction of levodopa.

I’m considering undertaking the same research, only this time doing it in a scientifically rigorous fashion, and I don’t want to miss anything that might be out there.

Can you direct me to the research you refer to above?

Thank you!

Hi Boann,
I do not remember where I first saw this referred to, but have come across references in older texts about PD. Also met with an elderly psychiatric nurse about three or four years ago who discussed with me at length how PD at one time was largely treated as a psychiatric disorder, and how distressing it was to be unable to find treatments. He described the introduction of levodopa, which many at the time believed was the cure, and their disappointment at the emergence of side effects.

This is of course very anecdotal so here is a link that refers too hallucinations as being a historic cause for Pwp being treated in nursing homes. I have a clear idea that the original text I found was published around 1970, and when located ill post it here for you. It was not research, it was if I remember rightly a medical textbook of the time.

http://www.nature.com/nrneurol/journ...l.2009.62.html

This is a detailed discussion of the subject, very well referenced.

http://brain.oxfordjournals.org/content/123/4/733.full