Mental Component of Parkinson?s

[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... (http://psychcentral.com/news/2008/12/15/mental-component-of-parkinsons/3504.html)

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.


(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... (http://psychcentral.com/news/2008/12/15/mental-component-of-parkinsons/3504.html)

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

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]

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]

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?)

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.

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.

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! :)

[indigogo]

Rosie - you are right, in a perfect world the doctor would be the one who informed the patient. But they don't. I collapsed with depression 4 years in to my PD dx and was told by my doctor, "we know this can happen, but don't like to tell you up front; we don't want you to imagine yourself into anything." Too late for me. Part of what we have been doing for the past 6 years is educating doctors to be more forthcoming.

boann - In my case, the problems I had with depression and executive functioning were not due to levadopa; I had never had levadopa, and did not start on levadopa until I was 6 years into my dx, several years after my collapse.

I am functioning much better now after 1. reducing stress in my life 2. using an anti-depressiant (effexor in my case) and 3. psychotherapy. Number 1, stress reduction, has been the most important.

This is not the regimen for everyone. You need to work things out with your doctor. But you can't work it out or be healed unless you can talk about it. We have a long way to go.

here's a great little music video about the difference of views between doctor and patient: The Hidden Side of PD (http://www.clognition.org/ilcilc.htm)

[paula_w]

rosie,

Once again, as is so often the case with this illness and the risky treatments for it, it's difficult to put into words - this mental component. Yes we are stating publicly that we are, in essence, cognitively impaired. And yes, we say things a "normal" person would keep to himself. But this comes from an intense desire to convey the illness to the public, and to help each other. It also comes with the nature of Internet communication; the ease with which we can let go when not face to face. It's our minds communicating, not our bodies; we are inside each others' heads so to speak.

I think when a person actually has PD dementia, he/she is gone from here; you probably are not hearing from that person anymore. We are more like learning disabled - lack of focus, difficulty in decision making, poor judgement, task completion, and inappropriate behaviors. But I see my own poor judgements coming from what I say - and not with personal safety of my family (grandson) or myself. We still have our wits about us, but forget what we are talking about, ramble, have to talk ourselves thru what we are doing - we are apathetic and procrastinate, don't pay our bills with no good explanation for any of these behaviors. The best word is not irresponsible - that implies lack of caring - but rather unreliable.

Why do we "splash it " over the internet? Because we want others to know that they are not alone and we need to know we aren't alone. It's the nature of online communication, where "real" people are not judged for their honesty about any aspect of the illness. We have an insatiable desire to influence clinical trials and come up with solutions. We still have our intelligence and the ability to use it. I would love to know in what situations you have seen it used against pwp, but understand if you cannot share that. Could it be that women can more freely talk about this than men? With exceptions of course. Just a thought, not a fact.

Here's what happened at my last neuro's visit and is possibly one reason why my knowledge and his acceptance of my independence in deciding what meds I take could be a drawback. I had a list of what I wanted to ask. On the list was included the single word crazy. I reviewed the list, and said, "ok i talked about how i was crazy," and he just laughed and let me continue down the list.

Many are worried about whether you are depressed or suicidal. But they don't get into "crazy"....lol

Do I sound too crazy to do what I do? Never mind don't answer that...lol When I speak with others who have the same experiences, I am empowered and strengthened, not weak and demented. I can deal with confusion if I know where it's coming from.

hope this helps you to understand our behaviors and why we share them,
paula

P.S. GregD - please don't ever turn your sign right side up..you have the coolest signature on the board.

[Jaye]

Listening to the voices here, I have to stand with acceptance of all we are, psychiatric an perceptual symptoms included. I retired on account of depression (major, physically caused, not just down moods) and loss of executive function (difficulty ordering, prioritizing, and routinizing tasks, as well as keeping track of the status of several things (multitasking, predicting outcomes), anxiety due to poor performance, lack of sleep (due to sleep disorder of PD), and the knowledge that I couldn't muster the motivation for much longer, and NOT because I was so physically impaired that it affected my work. I was unreliable and scatterbrained, in other words, and my doctors backed me up for my SSDI application. This is simply how my life is now. I have workarounds for many difficulties, and I participate in life to the fullest extent possible for me. My family, friends and faith community understand me pretty well by now because I describe how it is for me without whining and without denial. They know I'm comfortable with the truth, so there's no fear of saying the wrong thing and tiptoeing around me.
If I stutter and stammer when trying to talk, people who've heard me tell about having all my gears but sometimes no clutch will simply wait until I get my words out. If I thought I could conceal such symptoms ten years ago, I sure can't conceal them now, and I'm darn sure not going to stay home with the blinds drawn yet!

The point I'm trying to make is that Denial is not a river in Egypt. You can make crystal clear distilled water into a toxin if you drink enough of it.

Yes there are drawbacks to our drugs. It's a balancing act. Should we then deny that we have a deficit of serotonin and of norepinephrine as well as of dopamine, and thus help to delay further understanding? Should we get so mad at our doctors that we obfuscate the powerful good that some of them do? Should we wait for doctors to take responsibility for our health care when the responsibility is our own???

Now I'm too tired, after a 2 1/2 hour choir rehearsal today, to read this over and edit it carefully. If I've offended anyone, please permit me a rant. Paula says I don't write enough, so there you go, I wrote something.

I yell because I care. AND you don't have to agree with a word of it, anyone.

Jaye

[paula_w]

Hey there, you only used one word that I am not sure I know the meaning of, but now I'm going back to check your punctuation.

your friend to the end,

:D p

[bandido1]

To all those who posted to this thread---one word Texas style==

YEEHAW Bob C

[Chicory]

I had a neuro appt. today. One of the things I told him is how I have been getting lost- if traffic is backed up on the expressway and I try to find and alternative way home, I have been getting lost. It seems that whenever I have to choose which way to turn, I choose the wrong way. He said that is from the Parkinson's. I even found an article on this- Impaired Navigation in Patients with Parkinson's Disease- http://brain.oxfordjournals.org/cgi/content/abstract/130/9/2433?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=%28parkinson%27s+AND+cognitive+AND+dysfun ction%29&searchid=1&FIRSTINDEX=10&resourcetype=HWCIT

Then he asked if I have a problem with memory, which I do. I think I could play guitar better if I could remember fingerings that I work out and I have a terrible time trying to memorize music. He then prescribed Exelon for me. Has anyone used it? It is a patch and it is supposed to help memory disorders in people with Alzheimer's or Parkinson's. For Parkinson's it is supposed to help memory retrieval, executive function, and attention.

[Stitcher]

So, do I place my recent visit to Johns Hopkins as in inpatient for depression on the PD list or elsewhere. Have my ever increasing issues with depression been "just me" or just PD?

I am not delighted to divulge my recent visit to JH publicly, and I am not ready to discuss the details of my three week visit, but maybe it is the right thing to do to at least say what I have said above. PD was NOT factured into my visit there, never even discussed.

I know I am not alone with depression in my life and maybe it is something that needs to be discussed more openly as a part of PD.

Carolyn

[chasmo]

our love and respect for you is UNCONDITIONAL! We are all just happy that you are doing better! Thank goodness you got the help you needed.
IF you are ever as depressed as you were, know that help is just a phone call away. All of us are here for you 24/7.

love you kiddo!
You ARE the BEST!!

Charlie

[reverett123]

"For gawd's sake, what sane human being WOULDN'T get depressed?"

If they don't want me to get depressed, how about helping to minimize the stress, etc so that PD is all I have to contend with.


So, do I place my recent visit to Johns Hopkins as in inpatient for depression on the PD list or elsewhere. Have my ever increasing issues with depression been "just me" or just PD?

I am not delighted to divulge my recent visit to JH publicly, and I am not ready to discuss the details of my three week visit, but maybe it is the right thing to do to at least say what I have said above. PD was NOT factured into my visit there, never even discussed.

I know I am not alone with depression in my life and maybe it is something that needs to be discussed more openly as a part of PD.

Carolyn