Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 10-26-2007, 09:51 AM #31
Jaye Jaye is offline
Member
 
Join Date: Aug 2006
Location: The Left Coast
Posts: 620
15 yr Member
Jaye Jaye is offline
Member
 
Join Date: Aug 2006
Location: The Left Coast
Posts: 620
15 yr Member
Default

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.

Quote:
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,
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).

Quote:
Originally Posted by boann View Post
just to clarify - i am not trying to prove it is not a symptom,
You're not?
Quote:
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....
There is so much attitude in this that I don't want to be drawn into commenting on it.
Quote:
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.
I'm curious about the circumstances of these interviews.
Quote:
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.
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
Jaye is offline   Reply With QuoteReply With Quote

advertisement
Old 10-26-2007, 11:04 AM #32
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
Default 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
__________________
paula

"Time is not neutral for those who have pd or for those who will get it."
paula_w is offline   Reply With QuoteReply With Quote
Old 10-26-2007, 11:45 AM #33
Jaye Jaye is offline
Member
 
Join Date: Aug 2006
Location: The Left Coast
Posts: 620
15 yr Member
Jaye Jaye is offline
Member
 
Join Date: Aug 2006
Location: The Left Coast
Posts: 620
15 yr Member
Default 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
Jaye is offline   Reply With QuoteReply With Quote
Old 10-26-2007, 12:57 PM #34
K.Ibsen's Avatar
K.Ibsen K.Ibsen is offline
Member
 
Join Date: Aug 2007
Location: Pullman, Washington
Posts: 128
15 yr Member
K.Ibsen K.Ibsen is offline
Member
K.Ibsen's Avatar
 
Join Date: Aug 2007
Location: Pullman, Washington
Posts: 128
15 yr Member
Default

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
K.Ibsen is offline   Reply With QuoteReply With Quote
Old 10-26-2007, 01:38 PM #35
boann boann is offline
Member
 
Join Date: Sep 2006
Posts: 165
15 yr Member
boann boann is offline
Member
 
Join Date: Sep 2006
Posts: 165
15 yr Member
Default 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 is offline   Reply With QuoteReply With Quote
Old 10-26-2007, 02:25 PM #36
K.Ibsen's Avatar
K.Ibsen K.Ibsen is offline
Member
 
Join Date: Aug 2007
Location: Pullman, Washington
Posts: 128
15 yr Member
K.Ibsen K.Ibsen is offline
Member
K.Ibsen's Avatar
 
Join Date: Aug 2007
Location: Pullman, Washington
Posts: 128
15 yr Member
Default

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
K.Ibsen is offline   Reply With QuoteReply With Quote
Old 10-26-2007, 03:39 PM #37
indigogo's Avatar
indigogo indigogo is offline
Senior Member
 
Join Date: Aug 2006
Location: "all the way over on the West Coast"
Posts: 1,032
15 yr Member
indigogo indigogo is offline
Senior Member
indigogo's Avatar
 
Join Date: Aug 2006
Location: "all the way over on the West Coast"
Posts: 1,032
15 yr Member
Default

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.
__________________
Carey

“Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony
indigogo is offline   Reply With QuoteReply With Quote
Old 10-26-2007, 04:36 PM #38
boann boann is offline
Member
 
Join Date: Sep 2006
Posts: 165
15 yr Member
boann boann is offline
Member
 
Join Date: Sep 2006
Posts: 165
15 yr Member
Default 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.
boann is offline   Reply With QuoteReply With Quote
Old 10-27-2007, 07:33 AM #39
chasmo's Avatar
chasmo chasmo is offline
Member
 
Join Date: Aug 2006
Location: Los Angeles, CA
Posts: 714
15 yr Member
chasmo chasmo is offline
Member
chasmo's Avatar
 
Join Date: Aug 2006
Location: Los Angeles, CA
Posts: 714
15 yr Member
Default 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!!
chasmo is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Motor Neuropathy hoibie@comcast.net Peripheral Neuropathy 13 12-12-2009 03:58 PM
Informal Poll on SCS Curious Reflex Sympathetic Dystrophy (RSD and CRPS) 33 09-13-2007 10:51 PM
Tap Into Motor Cortex for Robotarm BobbyB ALS News & Research 0 06-20-2007 12:13 PM
Focus on motor neurone disease BobbyB ALS News & Research 0 06-19-2007 07:17 AM
very informal poll boann Parkinson's Disease 9 10-22-2006 05:49 AM


All times are GMT -5. The time now is 04:57 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.