It's great to see that MJFF's podcast on depression is generating discussion because that's exactly what we hoped it would do. Our aim with this podcast is to raise awareness of depression as a potential symptom of PD - distinct from the negative impact on mood that might result from a PD diagnosis - to promote discussion between patients and doctors on this topic.

But even though depression may be part of the underlying illness, not all PD patients will experience depression. For those PD patients who feel they are experiencing depression, regardless of whether it's part of the illness or a reaction to a diagnosis, you should talk to your doctor about current treatments that may help. Further research on treatments for depression in PD is needed and Dr. Hegeman's research in this areas will hopefully shed light on the effectiveness of current medications for PD patients. As soon as she has results to share, we'll send out an update.

Debi

Debi Brooks said, "But even though depression may be part of the underlying illness, not all PD patients will experience depression."

Debi - I think this is the major stumbling point to dealing with depression and PD - we continue to coddle, submit to, excuse, and give superior credence to those who don't, or imagine they don't, suffer with depression - even by saying "not all patients will experience depression" gives cover for those who are suffering but refuse to acknowledge it and get help.

Given the percentages they think do suffer from PD-related depression, which is over 50%, it is more of a factual statement to say, "depression is an underlying symptom of MOST of those with PD, so an evaluation is needed to rule it out." Anything less leads to a continued, unnecessary, and dangerous, pattern of denial.

In other words, it seems like we work hard to protect those who don't suffer from depression - to assure them that they are ok - rather than working hard to protect those who do suffer from depression and really need help.

Anyway, that is my perception.

Hi Carey,

I am one of those idiots who took great offence when a neurologist told me I did not have PD but had delayed stress syndrome. I went way over the line to prove him wrong. It takes alot of education and maturity (wisdom) to set aside old ingrained preconceptions about mental illness.

I see my psychiatrist at a "Behaivoral Heath Clinic" rather than a neuro-pschological clinic which is a much better description of what psychiatrists do. As long as patients see depression as a behaivoral issue rather than a medical issue, they will believe they have "lost control" of their behaivor (self-control) and blame themselves. The truth, that the depression is medically induced and not a matter of self-control, will help not to make the patient feel shameful and weak. The mental illness, however; is a great motivator to create self pity on the part of the patient and denial of any positive news.

Vicky posted:

"I am one of those idiots who took great offence when a neurologist told me I did not have PD but had delayed stress syndrome. I went way over the line to prove him wrong. It takes alot of education and maturity (wisdom) to set aside old ingrained preconceptions about mental illness.

I see my psychiatrist at a "Behaivoral Heath Clinic" rather than a neuro-pschological clinic which is a much better description of what psychiatrists do. As long as patients see depression as a behaivoral issue rather than a medical issue, they will believe they have "lost control" of their behaivor (self-control) and blame themselves. The truth, that the depression is medically induced and not a matter of self-control, will help not to make the patient feel shameful and weak. The mental illness, however; is a great motivator to create self pity on the part of the patient and denial of any positive news."

Vicky - I totally understand that this is a challenge, and you've stated it beautifully!

I think, though, that the medical establishment shies away from confronting the myths of mental health/illness, and that in order to treat it, it must be identified, confronted, and embraced. You'd think we could come up with a way to effectively communicate to people that their damaged brains need help!

In my case, the error went the other way - my docs were so afraid to mention depression or other behavioral/emotional/mental aspects of PD (fearing that the mention of it would cause me to imagine myself into it), that it took a real emotional and mental breakdown before they could summon the courage to give me accurate information - a little too late to save me from myself and allow me to keep my job. I had lost EVERYTHING before I could begin treatment to keep me on an even keel.

I don't know what the answer is - but I do know that MJFF does the most innovative thinking - and if they want to open up a dialogue on depression, I hope they are committed to helping find the answers. You can do all of the research in the world to find a treatment for PD-or-non-PD-related depression, but it won't matter unless we create a supportive system/environment that allows patients to seek that treatment and provides physicians with the tools and confidence to broach the topic.

Debi, Indigo, Peg and all......

I am one of the ones who is kind of in denial of depression, partially because I am by nature an optimistic and engaged person, and because the depressive symptoms that I can see in myself to not correlate with my experience of depression in other people in my life and their observations about depression. Often these are linked to life events heavily, though occasionally there have been completely unexpected out of the blue breakdowns.

In myself this is not the case, but I am coming round to accepting that some of the symptoms that I have, or what others might observe in me as behavioural effects, are in fact depression. The biggest issue I am dealing with is apathy, or perhaps abulia. I think this also relates to a 'reluctance' to go out, or to visit with people, that is wholly against the person I was. This is rapidly becoming one of the most disabling aspects of PD for me..

Actually even the language does not correlate, there is no way for me to describe this in usual terms, they are far too loaded to being behavioural......

So why do I, and perhaps many others with PD, find it hard to accept depression. Perhaps it is because of just this. We recognise that we are not the people we once were, but other than having PD, we cannot really see the link to 'being' depressed. Furthermore, I would guess that my GP would not either, and my neuro doesn't seem to want to discuss this aspect of PD at all. There is not enough out there that describes how best to treat depression in PD, so the podcast is very welcome of course.

But how many doctors are looking at things like this, it is great for our feelings on this to be confirmed, but it is like preaching to the converted. I am so hoping the WPC will address some of these things full on, and that the speakers and their sessions will be well attended and listened to...... I know there are some very good people who will be there.

In the meantime I feel like I am existing in an information vacuum in the real world, and am very reluctant to seek advice from people who seem even less informed than me...... let alone disturb the fragile medication balance that I am just about managing to keep for additions that could make daily living harder to manage, by putting myself into the hands of people who don't have a clue about depression and PD. And this is without the affects that medications themselves bring, I recently stopped using a drug that gave me physically a better QOL because the mental effects were so disabling, I felt like a complete zombie.

The message really needs to go out........ at the moment is is somewhere in the middle of a vast ocean of othe PD information, bobbing around in a bottle, waiting to be picked up..........

Lindy

Lindy -

I hear and understand every word that you write. It is textbook in its description of the problem we face.

We must not assume the presence of depression, apathy, and anxiety means the absence of optimism. These things together conspire to keep me - optimistic, party-and-people-loving person that I am - more and more house-bound and bed (or couch)-ridden. This despite daily doses of anti-depressant and mental health counseling as needed. It is a constant battle, but one that I fight because I am optimistic and think, even now and in face of facts that say different, that I might even improve.

The problem is huge; we are tilting against long held beliefs, cultural mythology, and bad press that assume mental illness equates to faulty character. It's a tough battle, but one that can only be fought, ironically, with optimism and hope.

And I really don't understand why more of an effort is not made to get the word out to health care workers about the connection between PD, depression and other mood disorders. We've been talking about it for years - what's the hold up?

Quoting Lindy: "So why do I, and perhaps many others with PD, find it hard to accept depression?" The answer lies within our cultural upbringing. My mother still says "You know she's crazy - she takes those drugs," and goes on to explain that the drugs are antidepressants. We associate depression with "crazy" people - I have heard it explained that it is like telling the world that we are weak and cannot handle our own emotions - or that is what some would have us believe.

It is only within the last 6-8 years that I have been able to freely talk about my depression. I now know that I cannot "pick myself up by my own bootstraps;" it is a chemical imbalance that can't be corrected by counseling, although professional counseling is very helpful in keeping us focused and pointed in the right direction.

I have been on as much as 400 mg of Wellbutrin (presently on 300 mg of Wellbutrin XL). My seritonin balance hangs heavily on the depressed mood side - whatever that means. I have to work at being happy - seriously. It is somewhat genetic in my family - my dad was an alcoholic and stayed depressed. And living with an alcoholic was enough to make one depressed. I can flip over to a depressed mode very easily by my perception of the action of others. I am my own worst enemy.

I think depression is a precursor of Parkinson's, and is often brought on by some traumatic event(s) in our lives. I'm really struggling here to say what I am thinking. In my humble opinion, depression is a safety valve that puts one's body into "idle" when some traumatic situation occurs (albeit perceived or real). It happens after one big stressor hits us, or a constant series of several stressful situations continue to pound us in the ground. And it strikes when our bodies are weakest- for example, we break over into depresssion when we are sleep deprived, or don't get enough exercise or are nutritionally deficient.

And this next statement may catch you a bit off-guard, and I have often wondered if others with PD have this problem. When I go off - really off - my mood slides down the tubes along with my movement (or lack of). I frighten myself at how down I can get in just a few minutes into an "off" time. Thank God I respond to L-dopa. If I stayed "off" like some PwP I know, I would definitely be a suicidal case. And when my L-dopa kicks in, so does my good mood. Has anyone else experienced that type of mood swing?

I sometimes wonder if this is why so many research trials fail - because participants have moods that parallel our inability or ability to have fluid movement. This could possibly be one explanation of why we see such a high placebo effect with Parkinson's; i.e. when I am depressed, my PD symptoms exacerbate.

Am I making any sense at all????

Peggy

just to be clear, having been through a major depression myself, I fully understand the gravity of the condition, and I am 100% in favor of screening or being on the lookout for depression in PD. As it does whenever and wherever it rears its paralyzing head, depression seriously compromises quality of life in PD, and can have dire consequences if not dealt with.

The good news is that Dr. Richard is not talking about major depression, she is talking about depressive symptoms – and anyone who has experienced both knows that they are not the same thing. Depressive symptoms are not good, but in my experience they are not crippling - major depression was crippling.

In fact, according to at least two papers I have read, while the prevalence of depressive symptoms in PD is high relative to the general population, the prevalence of major depression in PD is relatively low.

So that is good.

It seems to me that one thing is certain about depression in PD and that is that it can be a reaction to the situation. If anyone disagrees with that I would love to hear your thoughts.

But regarding depression as a symptom - how is that conjecture supported?

I have seen it be supported with two observations. The first is that depression is more prevalent in PD than it is in other diseases, including those that have been deemed comparably depressing.

But i have read prevalence rates in other diseases that are comparable to those found in PD, including the rate in the arthritis article I mentioned in my last post. Also, a review article I found pointed out that in the oft-cited study comparing depression in PD and in rheumatoid arthritis, the average duration of illness in the two groups – 3.5 years and 14+ years respectively – was not matched. Other studies have shown that psychological disturbances tend to occur more frequently in the early stages of chronic illness, before the patient has learned to cope effectively. The same review study points out that several other studies comparing depression in PD to that among amputees and paraplegics also failed to match the two populations in terms of age and duration of illness.

I, personally, would also question the comparability of the two groups, given that amputees and paraplegics have to make an enormous adjustment to a single massive change, whereas PWP are in a constant state of adjusting to accumulating loss, from the beginning of their illness until they die, or have DBS, if they are candidates.

So, has it really been shown that PWP are more depressed than people with comparably depressing illnesses?

The other observation is that people w/PD are more likely to have been depressed before PD onset than the general population. But there are other diseases for which that is true, for one (diabetes, heart disease) and for two, does that mean that depression is a symptom, of PD, of diabetes, of heart disease? Couldn’t depression have caused the subsequent illness, or couldn’t a third variable have caused both the depression and the subsequent illness?

So, does depression preceding onset really necessarily mean that depression is a symptom?

There are other observations, but each of them is also questionable and questioned by studies with conclusions that contradict those observations. These observations include association/lack thereof between functional disability and depression, brain imaging studies that show metabolic changes in depressed PWP as compared to non-depressed PWP, but depressed people without PD show the same metabolic changes; CSF levels of a serotonin metabolite are reduced in depressed PWP, but they are also reduced in depressed people without PD, and on and on…

I read Laura Marsh’s most recent paper on neuropsychiatric symptoms of PD and while she says at the beginning that:

“Whilst depression may occur reactively, or coincidentally, there is no doubt that at least in part it is an integral part of PD”

(an assertion for which she does not provide a source), she makes no further reference to depression as symptom – not in terms of it presenting differently, nor in terms of it being diagnosed differently, nor in terms of it being treated differently.

So I have found no definitive or even unchallenged evidence of depression as a symptom. But even if, for argument’s sake, I agree that it is, my question remains if depression as a symptom cannot be distinguished from depression as a reaction, if there is no difference in treatment for depression as a symptom, then why do we care? Why all the hoopla about depression as a symptom?

Is anyone trying to figure out how to tell them apart and whether or not they require different treatments? Debi, maybe you can answer that question?

And the review article I mentioned is free:

Depression in Parkinson's disease: Health risks, etiology, and treatment options.
Frisina PG, Borod JC, Foldi NS, Tenenbaum HR.
Neuropsychiatr Dis Treat. 2008 Feb;4(1):81-91.PMID: 18728814

hi peg,

i have read about what you describe in multiple papers so i will be surprised if no one else experiences it. it could be interpreted as either a reaction or a symptom - or maybe a combination - though i have to say that it would be hard to argue that being really off isn't depressing.

while it is entirely possible that PD symptoms worsen when one is feeling depressed, the situation you described above is the reverse, i think, is that right? i mean, first you go off, then you get depressed, i think - yes?