[NewsBot]

(Psych Central News) Parkinson’s disease is commonly known as a movement disorder characterized by tremors, rigidity and slow or altered movements. However, the disease that affects 6.3 million people worldwide can also profoundly influence changes in thought, behavior and judgment. As Parkinson’s disease progresses, up to 40 percent of patients may experience what is called Parkinson’s Psychosis, [...]

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From Psych Central News.

[rosie]

if this sort of publicity does us more harm than good. i mean, does funding for dealing with these problems increase as a result of publicity like this? i am not sure, but i am quite sure it casts doubt on all our perceived rationality and mental prowess, whether we personally are experiencing these issues or not.

[reverett123]

I notice that there seems to be no consideration given to the possibility that the mental symptoms are actually the result of 20 years of drug therapy. Instead, the assumption is that this is a symptom of PD that just happened to be overlooked until now so let's throw another drug at it.

Originally Posted by NewsBot

(Psych Central News) Parkinson’s disease is commonly known as a movement disorder characterized by tremors, rigidity and slow or altered movements. However, the disease that affects 6.3 million people worldwide can also profoundly influence changes in thought, behavior and judgment. As Parkinson’s disease progresses, up to 40 percent of patients may experience what is called Parkinson’s Psychosis, [...]

Read the full article...

From Psych Central News.

[boann]

I am with you, Rick - I became interested in what I will call "side effect creep" after seeing dyskinesia referred to as a symptom for the umpteenth time, and by people who know it is not a symptom. Two other phenomena that it seemed to me had crept from side effect to symptom over the years were orthostatic hypotension and dementia/psychosis/confusion.

So i did what I am sure was a hopelessly unscientific survey of the literature on my hard drive dated from 1967 to 1989 (with the selection criteria for ending up on my hard drive generally pertaining to things levodopa-related) and came up with 17 studies from which lists of side effects and symptoms could be derived.

13 of the 17 studies listed at least one of the following as a side effect of levodopa - i don't think any of them listed any of them as a symptom, but i don't have my notes with me to double check:

toxic delirium
hallucinations
mental changes
faulty decision-making - major decisions
depressive episodes
behavior disorders
mental disturbances
organic confusion
delirium
intellectual deterioration
confusion
depression
psychosis
paranoid psychosis
psychiatric disorders

given that by the 20 year mark, virtually *everyone* has been taking levodopa for quite some time, how is it that anyone can say with any certainty at all that *any* phenomenon is a symptom rather than a side effect?

[reverett123]

Something that I have run up against several times is feeling that PD was getting worse only to find that cutting back the meds solved the problem. A look at the inserts and the signs of too much compared with symptoms shows a lot of overlap.

Boann, about a week ago I posted a link in a thread entitled "Bean, Root, and Leaf" that lets you download a doctorial thesis on the history of PD treatments. It is a huge work but very readable and includes a table showing how symptomology has changed over the last 200 years. Well worth the download. -Rick

Originally Posted by boann

I am with you, Rick - I became interested in what I will call "side effect creep" after seeing dyskinesia referred to as a symptom for the umpteenth time, and by people who know it is not a symptom. Two other phenomena that it seemed to me had crept from side effect to symptom over the years were orthostatic hypotension and dementia/psychosis/confusion.

So i did what I am sure was a hopelessly unscientific survey of the literature on my hard drive dated from 1967 to 1989 (with the selection criteria for ending up on my hard drive generally pertaining to things levodopa-related) and came up with 17 studies from which lists of side effects and symptoms could be derived.

13 of the 17 studies listed at least one of the following as a side effect of levodopa - i don't think any of them listed any of them as a symptom, but i don't have my notes with me to double check:

toxic delirium
hallucinations
mental changes
faulty decision-making - major decisions
depressive episodes
behavior disorders
mental disturbances
organic confusion
delirium
intellectual deterioration
confusion
depression
psychosis
paranoid psychosis
psychiatric disorders

given that by the 20 year mark, virtually *everyone* has been taking levodopa for quite some time, how is it that anyone can say with any certainty at all that *any* phenomenon is a symptom rather than a side effect?

[Curious]

Originally Posted by rosie

if this sort of publicity does us more harm than good. i mean, does funding for dealing with these problems increase as a result of publicity like this? i am not sure, but i am quite sure it casts doubt on all our perceived rationality and mental prowess, whether we personally are experiencing these issues or not.

but part of the problem is that the person with pd may not be able see their own symptoms.

i think the family and caregivers need to be aware that this might end up happening. seek help right away.

what about the person with pd? if this might happen, wouldn't you want to know it is happening from either pd or the meds? and not that you are going crazy?

i agree rick, the meds need to mentioned. imo they pla a key part in the emotional changes that can happen.

my dad is a case in point. i know i have posted many times about the horrendous experience with requip. he is a changed person emotionally because of it. permanent damage.

the ethical and resposible thing his neuro should have done was not down play the side effects of requip to my mother. by the time she called me, my dad was in a full blown phycotic state of horrible hallucinations.

[paula_w]

I am one who admits to now feeling the mental component of this "experience". But when I wake in up the morning, every morning, I fight a physical illness, which includes being down mentally, but more in the sense that nothing is working yet. This is the time when I question, with great rationality, why I do certain things, like volunteer to travel when I can't even unlock my shoulders. I beat myself up for awhile, until I unlock and get on, instantly feeling better.

It's as the day goes on, and I take meds every two hours, that my speech becomes slurred, I ramble, can't remember what I'm talking about, and on and on. I just turn into someone who is much older than I am.

I see your point, but it is what it is, unfortunately, and it's not a new idea that the meds become worse than the illness. It's behavior, as well as movements that are affected by meds also. Rational thought remains until?????????? That's what concerns me.....how many have taken the meds as long as our generation? We are too young for dementia.

paula

[indigogo]

We must not shrink from the mental aspects of Parkinson's disease, especially depression. I have been a proponent for more study and care in this area for many years. The symptoms are real and devastating. I am doing better now, 10 years after dx, because I have paid attention to the mental aspects of PD.

http://www.clognition.org

http://www.clognition.org/cccc.htm (video with sound)

[rosie]

Originally Posted by Curious

but part of the problem is that the person with pd may not be able see their own symptoms.

you may be right, i don't know - but i have seen this idea used to disempower PWP (if i am perceived as incapable of accurate self perception, what does that indicate about my perception in general?)

Originally Posted by Curious

i think the family and caregivers need to be aware that this might end up happening. seek help right away.

i agree, i just think that informing the family and caregivers, in my ideal world, at least, would be the doctor's job, not the journalist's.

Originally Posted by Curious

what about the person with pd? if this might happen, wouldn't you want to know it is happening from either pd or the meds? and not that you are going crazy?

sure, but again, in my ideal world, my doctor would alert me, not a journalist.

Originally Posted by Curious

the ethical and resposible thing his neuro should have done was not down play the side effects of requip to my mother. by the time she called me, my dad was in a full blown phycotic state of horrible hallucinations.

this leads into boann's point - is parkinson's psychosis really levodopa psychosis?

but what i was really talking about in my original post were what are often termed cognitive changes, or executive function - and again, i am not saying these are not real or that we shouldn't be told about them. i am saying that in an ideal world, given how difficult it is already for PWP to make themselves heard, it would be better if this sort of info were communicated in the doctor's office, rather than splashed across the internet.

[rosie]

i hope my response to curious clarified my concern!