informal poll - motor vs non motor
 

I have got another informal poll for you all. There is a lot of focus on what are called non-motor symptoms of PD at the moment – they can included insomnia, constipation, sexual dysfunction, anxiety, pain, etc.

My question is, if you could ONLY have EITHER your motor symptoms cured, OR your non-motor symptoms cured, which would you choose?

This is a strictly either/or question – pretend you are taking one of those tests where you choose the answer by filling in the circle with your #2 pencil, and there are only two circles to choose from. If you are somewhere in the middle, please pick the answer to which you are closest.

Thanks!

addendum: and if you are willing, would you state the single symptom you would most like to be rid of? mine is bradykinesia.

my vote is for non-motor - specifically depression

non-motor!!
 

me, too! :grouphug:

Definitely Motor
 

Definitely would be rid of the motor symptoms first!!

Seems like I am always opposite the majority.

,,,ken

you are not alone, kc!
 

i don't know if the pollster is supposed to vote but i would get rid of motor, absolutely. not sure i have any non-motor symptoms.

Non-motor for me

motor - my non-motor symptoms do not stand alone as as devastating to my quality of life as the motor symptoms. But depression isn't a major factor for me so far - if it was, I don't know which I would pick. Without motivation to keep going the harder it gets, due to depression, it might be a more difficult decision.

paula

thanks paula - and a note re depression
 

thank you paula - and (i am about to get a little agitated and want you to know it is not directed at you or anyone w/pd but rather at the research community which has - yet again - bought in wholesale to a theory for which no one can provide supporting evidence0)

i know that depression as a symptom has become conventional wisdom at this point but here i go again, bucking the tide - i have been looking high and low for any evidence that this is the case - a study that compared incidence of depression in PWP to that in people with cystic fibrosis, rheumatoid arthritis, any degenerative disease that doesn't involve the brain, but there are none.

i have asked at least four researchers, two of whom are considered to be experts in the field and one who is starting out in the field and another whose specialty within neuroscience i don't know; the last person i mentioned had pretty much just taken others' word for it; the third person i mentioned said hey, you're right, i haven't found anything either; one expert told me essentially there was no hard evidence, and the second expert never responded to my email - and i have read all of her papers on pd and depression and not one of them addresses the question of whether it is a symptom or not.

so far the *only* "evidence" that i have seen is 1) that depression rates are higher among pwp than they are among the general population, and 2) that pwp are more likely to have been depressed before either onset or diagnosis (not sure which) than pwop (people without parkinson's).

depression rates being higher among pwp proves nothing - pd sucks - it is no wonder 50% of us are depressed - who wouldn't be? and you know what? the depression rate among people with asthma is 50% too, so there you go.

and as far is it pre-dating the disease itself being proof it is a symptom, consider the fact that depressed people are far more likely, i.e., 1.6 times more likely (that's HUGE) to develop coronary artery disease - but ain't no one calling depression a symptom of coronary artery disease, are they? no, they are not.

the stats re asthma and coronary artery disease came from a 2005 paper you can read for free here:

http://www.pubmedcentral.nih.gov/art...medid=15670467

yet again, the research world boggles me.

sorry!
 

Just realized i sent mixed messages by including depression in the list of non motor symptoms - wasn't sure how to handle that and then forgot i had included it. am going to take it out now. apologies again.

Interesting boann. I remember the first time I heard this new "definition" of PD was 2 years ago. While I'm glad they are discovering new things about the illness, if it delays a treatment or leads researchers astray - well I think I'll lose faith in man. Dare I say, what little faith I have? What good is it to correct my depression if I can't move? Interesting thoughts. That's why I like to hang around places....so they can look at a real clump of dopamine deficient cells...lol

paula

It is how I present to the world that bothers me most
 

I would vote to banish the motor symptoms. I feel self-conscious when I get up to walk at a social gathering and my first steps make me appear drunk.


Ann

Gotta leave depression in!
 

Paula and I just heard a Dr. Irene Richard speak at the Fox Rountable meeting in Cleveland. She is doing extensive studies on PD and its relationship to depression. (See the last Fox Research publication she is interviewed about "attitude" in Parkinson's). I am thinking now about people I know who committed suicide who had EARLY stage Parkinson's - one sacrifice is one too many in my opinion. Biochemical causes (an imbalance of neurotransmitters such as serotonin is known to affect the processing of thoughts and emotions).


Paula - if you can't move - you DO get depressed - but now they think depression PRECEDES Parkinson's. May sound strange, but I would rather not move than have the depression. Can you think of people who made a positive out of their handicaps? (Helen Keller - Christopher Reev, etc). Read this recent story: http://mentalhopenews.blogspot.com/2...ttered-by.html

Our minds are not separate entities from our bodies - we have to study and treat the whole body to eradicate or check this illness. The mind is powerful - VERY powerful. When my depression is in check, my attitude improves along with my movement. I am convinced that mental associated illnesses with PD may be part of the cause or at least a strong indicator of the degree of severity of the disease.

Boann - you have to check with Psychological and Psychiatric databases to find the body of research on depression and cognitive difficulty, insomnia, psychosis, anxiety, etc. All of these non-motor symptoms are not medication side effects.

Here are some areas being studied that links PD and depression:
* Identify structure and function of cortical areas, subcortical structures, and tracts implicated in the etiology of mental disorders.
* Identify neurotransmitters associated with mental disorders, pathways of synthesis and degradation, associations with brain structures and tracts, and roles of neurotransmitters in mental disease.
* Understand components of individual CNS neurons, including cell membranes, cellular content, the action potential and mechanisms of electrical and chemical cellular transmission.
* Understand major cell receptor types, composition, and function.

I believe the reason we can't find info readily on PD and depression is because they usually clump behavioral studies and have a title like, "Depression and neurological illnesses." Check out some specifics like neurophysiology, neuropharmacology, neuroendricinology, etc. Add to that synthesis, biosynthesis, degradation of all the chemicals involved in "movement disorders" (acetyline, dopamine, seritonin, norepinephrine, and so forth.

** Somebody needs to do a meta analysis of the body of literature and put "Parkinson's" in the title!**

maybe they have???? I have this theory that is genetic studies, or ways to measure chemical deficiencies BEFORE an illness were to occur, gene therapy to alter its course or even proper psychological/psychiatric intervention may be preventative measures. That's not a bizarre theory. When I have time I'll look up some of this stuff - maybe somebody out there wants to help out.

Peg

I don't see it as a debate -- it's an individual thing. Depression is debilitatimg if you have it.

The answers given to boann by researchers are disturbing tho and I am a cynic.

paula

Paula - you said

"While I'm glad they are discovering new things about the illness, if it delays a treatment or leads researchers astray. . . "

How can researchers treat or cure if they don't know what they are dealing with? The problem of emerging "sub groups" in PD is huge for clinical trials - it may be why trials fail if the trial population is diluted with people who don't even have the same disease.

How can they not explore these new avenues? The hard truth is that it may be too late for us. But it's the truth.

I'm with Pegleg and Indigogo
 

I battled depression for a decade or more prior to dx with early PD, and I mean EARLY. My motor symptoms were extremely mild (left foot dragging slightly, some balance problems, slight tendency to stoop at the end of the day, slight bradykinesia), and they still are. What blew me out of the water was the effect sinemet had on my depression! I was already on two antidepressants (went through several trying to find the right combination) when the neuro prescribed sinemet to check out "possible PD". It was the best antidepressant of any I had previously tried. I really don't think the relief of my mild motor symptoms had that much to do with the dramatic way that the "cloud" lifted.
I took medical leave prior to dx because the depression made it impossible for me to function as a teacher and researcher. It had gotten so bad that my department head asked me to resign my tenured faculty position. Instead, I was able to keep my job by taking several months of leave under the care of two great professionals. It was during that period in 2001 that I began sinemet and confirmed the PD dx. When I returned to work, my department head was delighted with the change in my affect and effectiveness.

Bottom line: nonmotor symptoms nearly did me in. Perhaps if my motor symptoms were more severe I would see it differently. Whether it is DM neuroprotection or a sinemet honeymoon (or a combination of the two), I thank God for it!

Robert

Right now I'd vote for the motor problems. I don't feel I have any depression, although people including my nerologist keep asking me if I am. I'm more frustrated with myself than anything because of my declining mobility. I was an extremely active person prior to this, and the lack of coordination makes me feel like I'm a brainless twit. My hands and arms do stupid things like hesitating and trembling when the movements should be smooth. From a musical standpoint, this spells disaster for anything I attempt to play.

Even though I didn't make music my career, it's been in my life more than anything else. So having this being taken away is like having my soul being eaten by a monster. So depressed, perhaps I am and I don't realize it. Discouraged yes. I can say that's what I am at least right now.

John

carey,

They don't know what they are dealing with - this is true. But we have treatments for depression - and I think I'd rather see a new grad student come along and solve the movement disorder, and hope that it also helps the depression, rather than the other way around - which I don't see any evidence would be likely.

boann's issue produced a hypothetical question. i'm not implying that depression isn't serious with pwp. But as an individual, I am by far suffering more from the motor symptoms. I do agree with boann's challenge to the connection between the two, whether it is a pre symptom or not. Depression could be a pre and continuing symptom in many illnesses. Our bodies are more complicated than we will ever know, and it knows when something is wrong when we don't by the chemical interactions taking place.

Here's a question that just came to me. I wonder if depression is not as big an issue for me because i had already gone through menopause in my 30's before PD diagnosis and obviously have hormone depletion? But on the other hand, estrogen doesn't cure PD; i took replacement for awhile.

paula

Robert, I understand what you are trying to say. But your improvement from sinemet confirms what I am saying. Prozac doesn't cure my motor symptoms. but Sinemet did solve your depression.

Paula - thanks for the clarification - I agree - enough about trying to research and prove a link between depression and PD - if you are depressed, then get treated for depression!

I can't figure out why she is putting so much effort into trying to show that it is NOT a symptom???!!!!

Still, the question remains: just what IS Parkinson's? More questions than answers right now.

motor, no quessttttiiioonn!!!!!!!!!

Now and later.
 

At this moment, in spite of walking like a drunk and having all over tremor when excited or upset or cold, etc etc, and in spite of my wonky balance, I prefer to keep the motor symptoms because I know what they are. I would dearly love to shed them all and to walk again the way I walked before PD, to eat soup with confidence again, to have my balance back.
But if I would have to give up my short term memory, to give up the mind that makes me me, to lose my happiness to depression in return for physical restoration, it is not worth it, the sacrifice is too large.
The non motor symptoms are sneaky, hidden, frightening. They attack and wound your whole being from the inside.
But later on, if my motor symptoms become paralyzing, I may change my mind.

Which motor symptom would I most like to get rid of.....hard choice, but I choose walking. It has been so long since I could walk well, it would be fantastic to get that back.

Add this to the depression dilemma!
 

this is interesting and right in line with what we're discussing here:

Wed Oct 24, 6:27 PM ET

Hope springs eternal in the cingulate cortex
Source: http://news.yahoo.com/s/afp/20071024...sPriHScGKJOrgF

PARIS (AFP) - Scientists have for the first time pinpointed the neural networks in the brain that generate feelings of optimism, according to a study released Wednesday.

The findings could lead to a deeper understanding of depression, which is often characterised by the inability to imagine a brighter future for oneself, the study says.

Hope for the future is a common human trait, even when there is no evidence to support such expectations, previous research has shown.

Most humans, for example, believe that they will live longer, stay healthier and be more successful than average, a mindset experts call "optimism bias".

But until now the exact location in the brain of neuronal activity related to feelings of optimism -- and pessimism -- have remained obscure.

In experiments conducted in the United States, researchers used magnetic resonance imaging to observe the brains of 15 volunteers aged 18 to 36 as they were asked to think about specific future and past events such as "winning an award" or "the end of a romantic relationship."

The respondents were then asked to evaluate several aspects of their own reactions, including degree of arousal and vividness.

The study, published in the British journal Nature, showed enhanced activity in two regions, the amygdala and the rostral anterior cingulate cortex, both of which are known to play a critical role in the subjective evaluation of emotions.

The researchers, led by psychologist Elizabeth Phelps of New York University, conclude that even if optimism bias creates unrealistic expectation, a good dose of self-deception is probably a good thing.

"A moderate optimistic illusion can motivate adaptive behavior in the present toward a future goal, and has been related to mental and physical health," they write.

Marcello Costa, a professor of neurobiology at Flinders University in Adelaide, Australia, said the study broke new ground.

"This work establishes for the first time a correlation between optimistic and pessimistic thoughts with activity of certain brain regions," he said in a commentary, made available by Nature.

But while identifying which parts of the brain control feelings of optimism is an important step forward, Costa said, the study falls short of its claim to explain how the neural pathways function.

"It is premature to talk about mechanisms mediating optimism or pessimism," he said

hi indigogo
 

just to clarify - i am not trying to prove it is not a symptom, i am trying to show that - as far as i have been able to find, both on my own and in consultation with 'experts,' - that all of the supporting arguments of which i am aware are either effortlessly knocked down or irrelevant to begin with. and apparently, at least three out of four researchers i consulted - the fourth, irene richard, did not respond to my query - are also unaware of any more solid evidence, or i would imagine they would have put it forward.

regarding irene's piece in the fox foundation newsletter, if you read it again, you will see that she does not offer any evidence to support her assertion that it is a symptom - none, not a shred - just says "this is so," and thus, it was so.

so, i looked again for papers by her and found one i had missed before, in which, unlike the three preceding and several subsequent papers, the authors did address the question of depression as symptom - or perhaps i should be more precise because what we are really talking about in PD would be more accurately termed "depressive symptoms" (DS). in fact, i just stumbled across a statistic - in this very same paper - that put rates of actual, clinical depression in PD quite low - 3-8%, which is much lower than that of the general population, and i have to ask why THAT isn't drawing anyone's attention?

god do i get sucked into this research stuff - and ramble on too. i will try to get to the point of mentioning this paper.

the authors put forth the supporting arguments for DS being reactive and then cite studies to refute them - must read those cited studies.

then they put forth the supporting arguments for DS being a symptom - these are much more detailed and get into the nitty gritty of neurochemistry. but - someone tell me if i am crazy - please read the following bit from this paper:

"Parkinson disease patients with comorbid depression have smaller subcortical nuclei, which is similar to non-PD patients with depression."

and

"Decreased metabolism in the frontal cortex-basal gangliathalamic loop of Parkinson patients is similar to the pattern shown in metabolic studies of non-PD patients with major depression.”

call me crazy, but i thought the fundamental assertion here was that it was a symptom of the disease, which would have to mean that it is in some way measurably *different* from non-PD depression, not the *same!* pointing out similarities to physiological changes that occur in depression that *is* considered to be reactive as evidence to support one's assertion that PD depression is *not* reactive flies in the face oof logic, doesn't it?

anyway - i wander.

in short my argument is not that it is not a symptom but that there is zero definitive evidence to support the argument that it *is* a symptom.

this is important because there is a finite amount of PD funding out there, so it behooves us to be pretty darned sure of the validity of X before we start throwing money at it, because if we spend it on X, we can't spend it on Y.

and i am nowhere near convinced of the validity of X, so the gobs of research funding that are being lobbed at the problem of X are, in my opinion, premature and perhaps ultimately misguided.

and that concerns me, because there are plenty of facets of PD about which there is zero doubt that they are symptoms, and none of those has yet been effectively dealt with for anywhere near as long as people live with this disease.

peggy, i will look into what you are suggesting this weekend. i was supposed to be workiing all night and instead i did this!

b

non-motor for sure...hate the sweating...hate it...hate it...hate it :(

boann - the major motor symptoms of PD are not limited to just Parkinson's. You can have a tremor or dystonia or balance problems and not have Parkinson's. Just add depression to the list.

On the other hand, every person dx'd with PD does not have all of the PD symptoms. I have tremor, bradykinesia. Don't have balance problems or rigidity.

But, if you are looking for evidence of PD-specific depression, see zucciniflower's thread started today, Depression in PD: PET study, that cites the following paper http://brain.oxfordjournals.org/cgi/...128/6/1314#top

and concludes, "our results suggest that depression in Parkinson's disease is associated with a specific loss of dopamine and noradrenaline innervation of cortical and subcortical components of the limbic system. These results might help in understanding the functional anatomy of depression in Parkinson's disease and have therapeutic implications."

Motor versus non-motor?

For me, the non-motor symptoms would be my choice. Sure the rigidity, pain, bradykinesia, difficulty walking, and fatigue are awful. But, problems thinking, reasoning, remembering, and concentrating are what trouble me the most, because these define who I am.

There's so much talk about depression that it seems to get in the way. I think there are a lot of aspects of PD that seem like depression but aren't really depression. I'm trying to write about depression and just can't seem to get my thoughts in order. I guess I'll just conclude with my belief that PD is a complex disorder and adding depression to the discussion adds a lot more complexity. I have noted, as someone else said, that dopamine is the best antidepressant. That statement reduces the complexity considerably.

Karl

Co-occurrent
 

I abstain on the grounds that the whole syndrome is more deeply misunderstood by making the distinction. But. Who cares what motor symptoms you have if you're dead?

boann, I want to emphasize that depression is not about anything. Down-in-the-dumps is about discouragement, self-pity, or any other tag one can put on it. Real clinical depression is a physically-caused (endogenous) disorder as real and dangerous as a shattered femur. It is generally treatable to some extent, but the journey to relief can be torturous. Untreated, it is fatal.

By the way, I would love to never hear the term "mental illness" again, although the term has helped steer society away from the notion that "nonmotor" symptoms were the fault of a weak or indolent character--society, but not always our families!

I would posit that the difficulty of distinguishing the symptoms of depression from the symptoms of PD is contributing to your quandry. It takes a real expert sometimes, and the very terminology obfuscates the investigation. See Mov Disord. 2006 Feb;21(2):148-58. You were having trouble finding the research? I'm too asleep to quite follow, but searching PubMed on "depression Parkinson's" or "Parkinson's depression" yields tons of stuff. Or see the NINDS and/or NIMD websites.

Hope this doesn't obscure whatever it was...zzzzzzzzzz.....
Jaye

Thanks, Jaye!

I can't quite believe we are still having this conversation. Depression is a well established PD symptom; it's as nonsensical as if we were debating whether or not tremor is PD-related.

The societal stigma about mental illness is a huge barrier to treatment.

to indogogo and jaye
 

first, to jaye

i get the impression you think i am dissing the seriousness of depression. if you could point out to me where i did that, i would be really impressed, because, you see, i am still not fully recovered from a serious major depression, complete wth a suicide plan, and i am beginning to think i may never be the same person i was before. and this would be the second time i was nearly destroyed by depression - the first time i actually sent up a tiny trial balloon by cutting myself with a piece of broken glass to see how much it would bleed - i was going to slit my wrists, you see. fortunately, the tiny bit it bled scared the bejeesus out of me and i had to find another road, so yeah, i am fully aware of the seriousness of depression.

however, just because i have experience depression once while having pd and once loooong before is not conclusive evidence that it is a symptom. if it is, then so are uti's and collapsed discs and psoriasis, and several colds.

indogogo, you asked me a question, i answered without attitude or sarcasm. you can't believe you are still having this conversation? golly, don't stay on my account. but if you do, please be nice.

to everyone
 

thanks for playing! i am actually really more interested in my original question, even if you consider depression to be a symptom, so if anyone out there is still interested in answering, i would be much obliged. just to give a little background, there is a lot of talk about nonmotor symptoms these days, and they are somtimes even referred to as being even more disabling than motor symptoms. well, that is so far from my experience that i had a hard time believing it could be true.

but really i had no idea, since i have such little direct interaction with others with pd, so i thought i would just throw it out there, and lo and behold, i am NOT the center of the universe, and quite a large percentage of folks who have responded have said non motor is worse for them - who knew? well,now i do.

thank you,
b

My Social Security Disability claim was approved largely because I had well documented major depression - both diagnosed and under treatment. After I lost my job related medical insurance and applied for another policy, the fact that I was undergoing treatment for depression counted more points against me than my Parkinson's, and I was denied. The insurance industry is well aware of the disabling nature of depression.

Boann, you are strong to have been able to defeat your depression and keep working despite your PD. I, so far, am not able to do so. The PD is one matter; the depression I should be able to conquer.

I do not play nice when it comes to a challenge of the "legitimacy" of depression as a real and dangerous disease. That is what I assumed from your posts; obviously I read you wrong, and I apologize for that.

Here is a music video I made 5 years ago about how I see the impact of "non-motor" symptoms. It has taken years to get the PD organizational establishment to pay attention to us, and to even begin to understand how the so called secondary symptoms of PD destroys lives.

Don't worry - it goes fast, and, hopefully, you'll appreciate the humor
http://www.clognition.org/cccc.htm

boann, I have my horror stories, too, including relapses.

Eight years ago, it was scarcely known that depression could be a COMORBIDITY with Parkinson's disease. Patients were being treated as if they were lazy, indolent, uncooperative, slovenly, self-pitying, and stupid. Occasionally, if they tried to stand up for themselves anyway, hysterical was added to the list. Within six months of diagnosis I volunteered for research that began to show that there were different symptom profiles in PD, and that CO-OCCURRENT depression and/or anxiety were often found.

One of my earliest-made and closest friends with PD is an attorney, and I would rather he were here to discuss this, because I am not accustomed to your style of debate. You made some statements that did not make sense to me, and I contributed to the discussion from a viewpoint of no little knowledge about the research on depression AND PD.

Okay, because you asked, I'll try to show you where my difficulties are with what you said, but I do not think you are unaware of the seriousness of depression (if that's what "dissing" means).

You're not? There is so much attitude in this that I don't want to be drawn into commenting on it. I'm curious about the circumstances of these interviews.
Isn't that exactly what you're doing with the clinical evidence?

The rest of your comments are--seriously--a little too grammatically complex for me to analyze in less than a few hours, and I don't choose to take the time. My anterior cingulate cortex will be adequately challenged by installing the new operating system (for my Mac) that FedEx brought to the door while I've been writing this.

Here's my point for this post: check the bolded words above. I don't believe that the experts I know are saying depression is a symptom of PD, but that it often occurs with it and should be diagnosed and treated in order to avert further damage to the brain and to support QOL. To support that end, and recognizing that most of my fellow patients don't have the opportunity for continuous learning from the researchers who are my doctors, I have been working at spreading such knowledge as I have through the medium of this forum for about eight years. For the first five every fact was carefully checked and recorded. By now I trust myself to discuss what I know and to recognize my ignorance on what I don't know.

Now you know more about me than I know about you. I like your spunk. Please PM me and I'll send you my phone number or Yahoo name or something.

Respectfully,
Jaye

i find this interesting
 

I have been trying to read this objectively, knowing the major participants and realizing their experiences with depression. My own experiences with non-motor symptoms lean toward anxiety problems rather than depression so I think I can be somewhat objective.

I see boann's reason for inquiring about this in the first place as having to do with people making careers and pharmas making money from certain popular concepts. I'm sorry, but I never want to see another study on coffee, tea, or nicotine. That money could go to more important [IMO] research.

My motor symptoms are pretty bad as those of you who have seen me off with dystonia will attest to. Without sinemet I am debilitated, almost completely dysfunctional and in pain. But the depression periods in my life have come from life situations - mostly the turmoil within my own family, not from this horrific disability. This could change I realize.

I understand that the non-motor symptoms need to be recognized because through education others can more readily understand us, we can validate what is happening to our thinking abilities, and perhaps most importantly, our employers can understand us and we can receive benefits when the time comes. But other than to hopefully find a biomarker - to me, and here is what i think boann is concerned about- the most money should be spent on finding a treatment for the movement disorder. Depression is already treatable.There are medications already for attention deficit, anxiety, and other non-motor symptoms. Many illnesses cause thinking lapses, such as in the case of my cousin, who almost died of toxic shock syndrome from a tampon back in the 70s. She's had memory lapses ever since, but not impairment from them.

When you become advanced the physical suffering is continous and leads to other physical problems. There is always something - I want relief from being elderly when young and i think that comes from dopamine correction.

paula

OOOOOHHHHHHHHHHHHhhhhhhhh
 

Okay, Paula, once again you cut right through to the real issue. I'm sitting here trying to make a distinction between "symptom of" and "comorbidity" and trying to clarify what little I know about the workings of the research community, and you tell me the question is really "why do they spend so much money on stuff that isn't PD?"

Some guesses:

• depression is more immediately fatal?
• solving PD depression will help solve all depression?
• neuropsychiatrists, no less than neuroscientists and neurologists, deserve something to do with their time?

And some things I'm sure of:

• the disease processes of the two disorders, PD and depression, are too little understood, too similar, and at too close quarters in the brain to separate them out into PD or depression (as noted in the abstract I quoted earlier)
• they don't even know what the meds do to brains
• they done even know where the disease process starts--gut? spine? brain?
• treating the PD doesn't ease the depression (well, somewhat, early on, as RLSmi notes), but treating the depression does ease the PD (per researcher)

I'm not saying what the priorities should be, just seeing some possible reasons why depression is studied and why it may shine a light on the pathology of PD as well.

I don't know what the proportions of research studies are, but as someone mentioned, different researchers look at different things. Maybe some of the docs who are clueless about the background on depression are not neuropsychiatrists. Maybe the neurologists and neuroscientists are working on different things.

As for dopamine regulation, remember that istradefylline (no, Paula, not the blood pressure one, the experimental one that I'm still taking) is at FDA for approval. It's a good drug and may ease fluctuations for a lot of people. It's not a dopamine drug, though; it is an antagonist to adenisone at the A2A receptors. There are also people working on glutamates (no, not the monosodium kind) and other brain chemicals.

There is, as they say, "reason to hope." I, at least, have to believe there is.

Jaye

This thread didn't go very well. From a simple either-or opinion question, it went way off topic. From motor versus non-motor, the discussion went deeply into the subject of depression. It seems to me that depression is one of many possible non-motor symptoms. I think, though, that if we wanted to talk about depression, we should start a separate thread on that topic. (Actually, the very first thread I started on this forum dealt with depression.)

A problem with depression is that it can exist all by itself, as a result of a non-medical condition, as a result of a medical condition, as a result of trauma, or perhaps a host of other initiating events or situations. Another problem with depression is that it can be self-perpetuating. Further, it can breed other problems that don't seem directly related to depression.

A doctor that I no longer see kept telling me that it would be better to have depression than PD because depression is treatable. I kept thinking that I don't necessarily want a diagnosis just because it has a better prognosis--I want the correct diagnosis, whatever the ramifications.

I think that we're better off setting the discussion of depression aside from the discussion of PD in general. I'm not saying ignore it. I'm saying it's important to focus on the symptoms and their root causes.

• If I tell my doctor I feel fatigued a lot, then it must be depression. Or could it be dopamine depletion?
• If I tell my doctor I don't feel like doing anything, then it must be depression. Or could it be because of the rigidity from dopamine depletion?
• If I tell my doctor that I have difficulty concentrating on complex tasks, then it must be depression. Or could it be dopamine depletion?

For more than a decade, I kept seeing doctors about various problems. Eventually I decided that I was like the elephant in a room full of blind people. They would evaluate each specific complaint and sometimes send me to specialists--like when I saw an ENT doctor for my tinnitus, which is a side-effect of antidepressant drugs.

No GP-type doctor ever put it all together. They would treat every condition individually and usually come back saying that I was fine. The stiffness and rigidity must have been arthritis, except all tests for arthritis came back negative. So, if I didn't have arthritis, it must be depression. Actually, the doctor called it a somatic manifestation of chronic depression.

Even after I was able to take some sinemet for misdiagnosed RLS and found that the arthritis (aka, somatic manifestation) disappeared, my doctor insisted that it was depression that caused the rigidity. (The effect of sinemet was a defining moment for me during my struggles, however.)

So, I conclude that there is a temptation among the medical community to stray from the path of pursuing an organic source. Was I feeling depression as I kept insisting that the problem wasn't depression? No. But it was depressing to feel as though my doctor wasn't listening to me.

At the age of 55 I knew my body well enough to know that something was amiss. I wasn't feeling depressed. I was feeling anger and frustration. Of course, anger and frustration can develop into depression when chronic, but I am too much of a fighter to let that happen.

Before concluding that depression is a symptom of PD, I would urge everyone to examine carefully symptoms that might be attributed to depression. It can take many years before enough of the PD symptoms become sufficiently evident to be recognized as PD. During those years, it may seem to be depression or arthritis or something else. In fact, feeling lousy all of the time can be quite depressing. But depression, nevertheless, is not a direct symptom. It is a result of other symptoms.

Some of the doctors I see still want to treat me for depression. I'm trying to be assertive about being treated for Parkinson's Disease. I'm quite ready to conclude that I feel far less depressed when the PD medications are doing their job and I can move relatively easily and focus my concentration enough to work in my profession.

One last thought about motor versus non-motor: I'm a computer programmer by profession. I need to be able to perform tasks requiring extreme concentration but I also need to be able to rapidly hit the correct keys on the keyboard. So, with apologies to the person who started this thread, it's sort of a dumb question, though I do understand and accept the desire to learn more. However, to do my job, and I'm sure it's true of most other folks, I need both motor and non-motor capabilities. There is no line that divides one from the other.

I will certainly agree, though, that there is a need to recognize that cognitive (i.e. non-motor) symptoms exist and definitely need to be part of the PD treatment package. I strongly urge, however, that we resist the urge to bundle the cognitive symptoms up into a single descriptive word: depression. Let's describe them as they are: confusion, memory problems, inability to concentrate, fatigue, etc.

A Final Note: I guess this was a bit of a rant. Sorry about that. Everyone should know that my comments weren't meant to be directed at any one who has posted to this topic. My opinions a based primarily on my own experiences.

Karl

geez
 

don't have time to read all the detailed posts at the moment but wanted to thank jaye and indigogo for their posts. more later.

k ibsen, i agree this went way off topic and i tried to re-rail it in my 4am post. however, i think the word "dumb" used to describe the original question is a little harsh. i would hope the fact that i empasized that the question was either/or would indicate that i am fully aware that it might be difficult to decide, given both are pretty crucial. I would also point out that in spite of the potential difficulty in separating the two, pretty much everyone who answered found it possible to choose one or the other, and many were quite emphatic.

geez. i guess if nothing else i am being reminded of how important it is in forums like this not to make assumptions about someone's experience (because i have made that mistake myself) and how important it is to stay constructive - for example, even if, after making sure i really understand what they were thinking, i really think something someone said is dumb (which is unlikely), that would be one of those things that there really is no need to actually say.

and thank you, too, paula, for managing to communicate my thoughts far more effectively than i appear to have been able to!

so back to either/or, if there is any life left in that question! if not, thanks again, all.

boann,

I probably could have used a better word. I did try to qualify it, though, by saying I understood the desire learn and understand. To say that the question was "dumb" does not imply in any way that I think the person who asked the question is dumb.

I'll try to apply a different word or phrase... perhaps not useful, irrelevant, prone to misinterpretation, not an "apples versus oranges" sort of analysis, not useful for drawing conclusions, etc.

I originally began my post by saying somewhat sarcastically that the answer is simple: whatever bothers me most at the moment. I deleted it though.

How can we really differentiate between motor or non-motor as being the most problematic? Right now, I'm having some significant pain in my hands while typing, so it bothers me most, right now. In 45 minutes I need to be at work and try to tackle a difficult programming problem in a program that was written some ten years ago and for which there's no real documentation. In 50 minutes, my problems with concentration will bother me most.

So what does that tell you? Put that into a motor versus non-motor analysis and derive a useful conclusion for me.

Now, however, I do understand how this topic went so far astray. Use of the word "dumb" in the earlier post was not an attack. This post, however, was. You asked the question. Try to be up to accepting the replies. I'm mad now.

Regards,

Karl

I think what emerges is the different ways we experience PD - does this mean we all have the same disease or different diseases?

My main motor symptom is tremor / Paula has no tremor
My main non motor symptom is depression / Paula hasn't had it the same way
I think the one symptom that we share is bradykinesia.

Paula suffers much differently than I do, our symptoms are mostly different rather than the same. How can it be that we share the same disease?

Even those of us with the same symptoms have different responses - a friend of mine is tremor dominant and it ended her career as a dental assistant at the age of 40. My tremor never impeded my job as a university administrator - I was totally derailed by depression.

I think the question motor vs non motor is valid; I'm just not sure if the answers prove anything.

validity
 

since i asked the question for purely personal, information-gatherine reasons, rather than to prove anything to anyone else, I guess whether the question is valid to *me* is what is important to me.

and since i have learned what i set out to learn, i would have to say that it fulfilled its purpose, for me, and that would seem to me to be the test of its validity to me.

other people finding it valid and getting some value out of it is gravy, and other people finding it invalid is fine - you have your opinion, i have mine - i am ok with that.

k.ibsen, i have been at work all day and haven't had the chance to really read today's posts. I will try to do it tonight though i have not finished my task for the day and will be taking it home with me. I am not sure i understand your anger, but i think i will respond to you privately on that.

my .02 cents worth........
 

mobitity, with out a doubt. Depression I can deal with, not being able to move, well, this last week proves that REALLY sucks!!