Parkinson's Disease Tulip


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Old 05-20-2010, 12:23 PM #1
Debi Brooks Debi Brooks is offline
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Default New MJFF podcast on depression

Yesterday we posted a new podcast...this one is on depression. Here’s a link to the podcast page on michaeljfox.org:
http://www.michaeljfox.org/newsEvents_podcasts.cfm


And you can subscribe to our podcasts through the iTunes store (for free!):
http://itunes.apple.com/podcast/the-...on/id372001547


Would love to hear feedback...and/or suggestions for future topics!

Debi
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Old 05-20-2010, 03:17 PM #2
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Default how to raise awareness?

Excellent interview with great information.

Debi - Dr. Richard talked about how the link between PD and depression is still not well known by patients and their doctors; she said we need more awareness because treating depression can significantly improve quality of life. This has been my one-note song since I was diagnosed, 11 years later awareness is still lacking. My website, http://www.clognition.org was established in 2002; the information it holds has basically not changed since then; I still get emails from people saying, "thank you for understanding - our doctor hasn't a clue."

So what is the answer re: awareness? The Irene Richard podcast is excellent - how do we get the word out to physicians, patients, and their families? This is a question that seems to stymie researchers - basic and clinical. How do we disseminate important information?
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“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
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Old 05-20-2010, 04:16 PM #3
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Default use patients

How about a talk with patients? Ask patients questions that researchers would like to know. The patient just needs a webcam and the interviewer needs to display the faces on a screen.

All of the patients could be shown in their own box i think...like hollywood squares. Questions could be submitted prior to the podcast and doesn't have to be live. There are too many wires to connect - would probably be tech problems.

And Debi, no celebrities please. OF course that leaves me out....ha ha ....but the truth is, the world needs to hear our issues, see the harsh reality and hear how we cope without uber patient 's advantages.

i think it would be reaching out in an innovative and caring manner and slanted toward the advanced. we know a lot and have symptoms that are very obvious. It would look like hollywood squares with head bobbings.

They have to be your average pwp......no rich or famous people - it skews everything. i can think of so many questions and realize they don't have the answers - so we could just talk bout the current research situation and plug the newly diagnosed clinical trial. Both of my daughters are interested.

oh - podcasts - sorry even easier. but not as effective - they need to see pwp.


sincerely,
paula
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Last edited by paula_w; 05-20-2010 at 04:31 PM. Reason: to add about podcast
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Old 05-24-2010, 02:06 AM #4
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Default comments and questions re podcast

Thank you for the podcast.

With reference to the symptoms of depression having a negative impact quality of life in Parkinson’s disease, is that not the nature of depression? Is there a suggestion that there is some difference between the impact of depression in Parkinson’s and its impact in other contexts?

With reference to depression as a symptom, it is a little unclear from the podcast whether it is always a symptom:

“what we think is that depression in Parkinson’s disease is not a reaction to the illness, it is actually a part of the underlying illness…”

or only sometimes a symptom:

“we actually think that depression in some patients may be a part of the underlying disease.”

Since it seems unlikely to me that it is always a symptom, I think this theory must be that it can be a symptom *or* a reaction.

Then the question becomes is there a difference between depression as a symptom and depression as a reaction. And it seems from Dr. Richard’s response that’s there is no discernible difference. If that is the case, then why is a potential difference noteworthy in any way? if they can’t be told apart, they can’t be treated differently.

Are there any efforts underway to determine whether or not there is a treatment relevant difference between depression as a symptom of, and depression as a reaction to Parkinson’s disease?

And given that the symptoms of depression in Parkinson’s are the same as the symptoms of depression in other contexts, what is it that has made us question whether or not standard depression therapies work in Parkinson’s?

And as far as studies showing that people with arthritis have lower rates of depression in people with Parkinson’s, the first study I stumbled across comparing depression rates among those with Parkinson’s to those with arthritis found no difference between the two:

“As with previous studies, the patients with Parkinson's disease scored significantly higher than normal controls on various self-ratings of depression and anxiety but, in this study, did not differ from those with arthritis. Qualitatively, both the Parkinson's disease and the arthritis groups had depression characterised by pessimism and hopelessness, decreased motivation and drive, and increased concern with health.” (Gotham, et al., J Neurol Neurosurg Psychiatry. 1986 Apr;49(4):381-9.)

Also, I wonder how long arthritis therapies work on average, and how long people live with the disease on average. I also wonder if arthritis therapies have side effects with the potential to negatively impact everything from one’s ability to perform everyday tasks, like drinking a glass of water, or working, to one's ability to socialize comfortably.
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Old 05-24-2010, 08:26 AM #5
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Default Thanks, Debi

This was information that I basically already knew, but I think it is one of the few times that i have heard a professional say that depression was actually a manifestation of the disease itself.

rosie asked: With reference to the symptoms of depression having a negative impact quality of life in Parkinson’s disease, is that not the nature of depression? Is there a suggestion that there is some difference between the impact of depression in Parkinson’s and its impact in other contexts?

Rosie, this is not a relatively new theory, but I believe after people like Dr. Laura Marsh have been preaching it for years, it is finally getting attention. PD is a movement disorder - right? PD is also a long list of non-movement symptoms or syndromes - right? Right to both of the above questions/comments.

From what I have read and researched, you can have two types classification of depression associated with a chronic illness -exogenous and endogenous depression. Exogenous depression occurs because of one's "situation." For example, you have PD, you have to quit your job or take early retirement, your physical activity is limited, and relationships change - often for the worse. That is enough to bring on deression in ANY situation. Then there is endogenous depression - what we refer to as a "chemical imbalance." You get down because your molecular chemical homeostasis goes haywire, and you cannot change this type depression by an attitude adjustment (broadly speaking). PD is a neuroligic illness - and dopamine, in which we are deficient, is the "feel good" chemical in our brains. When we alter our dopamine levels (which we must do in order to have fluid movement) it messes around with other chemicals involved in this balancing act - seritonin, etc. Dopamine, in other words, not only is required for "normal" synaptic processes to function properly, it also is very much tied to our mood or mental well being.

What Dr. Richard pointed out in this podcast is that she thinks that depression is a manifestation of the disease (PD) itself. I don't have time to look up the references right now, but there are studies that say in many instances, depression preceeds a diagnosis of Parkinson's.

So rosie, I say all of this to answer from my perspective, and apparently also from some reputable researchers and professionals, that depression definitely impacts PD patients differently than it does many other syndromes or diseases. When one is depressed, our "wiring" is not operating with the right chemical balance, so our movement symptoms exacerbate.. If you take care of the depression, often the movement symptoms improve.

I know this first-hand, as I have to keep my mood stabilized with "chemicals" consistently. And once it's "fixed," it may not stay in balance with the same regime - it's a constant trial and error effort.

Sorry I didn't back this up with scientific references, but I promise I have read numerous studies on this very topic.

And only speculating, since arthritis is not a neurologic disorder, the results would vary greatly from the association of depression/movement in Parkinson's.

Carey - Jaye - help me out here with some of Dr. Marsh's work!
Peggy
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Old 05-24-2010, 10:28 AM #6
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Default battling the stigma

Hey Peg -

Not only has Dr. Marsh been preaching the link between PD and depression for years, newer research suggests that depression might in fact be an early sign of Parkinson's disease.

The reason it is important to tease out the differences regarding the cause of the depression (is it because you are bummed you have PD? is it because of a chemical imbalance/change in your brain?) is that it influences treatment. I don't think this is unique to Parkinson's, but it is unique to depression - do meds work? Counseling? Both?

Bottom line for me: doctors treating someone with Parkinson's should assume the presence of depression until it is ruled out.

We have a long way to go in our society to erase the dangerous stigma that comes with a dx of mental illness - dangerous because many people would rather deny than get help. Ridiculous, and I am losing patience !!!
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Old 05-24-2010, 11:43 AM #7
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Default Right on, indigogo!

Carey

One might say we are "anxious" to straighten these misconceptions out! But then there's that label of having anxiety . . . nuts! (Oooooohhhh - no pun intended! LOL)
Peg
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Old 05-24-2010, 12:46 PM #8
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Peg - My anxiety is depressing !! (am totally unsure whether or not this is a joke !!)
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“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
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Old 05-25-2010, 02:25 AM #9
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Peg,
Thank you, very nicely explained. As you say PD influences life changes and we have the disadvantage of both external and internal events peaking at the same time. Screening for depression should be a routine test in my opinion.....

Carey
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Quote:
he link between PD and depression is still not well known by patients and their doctors; she said we need more awareness because treating depression can significantly improve quality of life. This has been my one-note song since I was diagnosed, 11 years later awareness is still lacking. My website,
I
What you say about depression is so true for various other manifestations of PD too. I have been reading a lot of old posts of the forum lately, (mostly science and biology related posts) I find several instances where PWP are way ahead of doctors and researchers in their observations and explanations of PD.

It seems obvious that Listening to patients and taking their words seriously (by docs, researchers, family etc) is a first step to PD awareness
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Old 05-25-2010, 02:46 AM #10
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Default

Debi,
a few suggestions for the future podcasts
PD and Nutrition
especially Vitamins and minerals

DBS when do you go for DBS?

Stem cell therapeutics are we there yet?

girija








cast...this one is on depression. Here’s a link to the podcast page on michaeljfox.org:
http://www.michaeljfox.org/newsEvents_podcasts.cfm


And you can subscribe to our podcasts through the iTunes store (for free!):
http://itunes.apple.com/podcast/the-...on/id372001547


Would love to hear feedback...and/or suggestions for future topics!

Debi[/QUOTE]
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