I think it is a very sweeping thing to make a decision that 'decides' that a condition falls within a particular category such as 'neuropsychiatric'. I don't dispute at all that there are cognitive changes and depression associated with PD, but cannot see that these are present in all patients from dx onwards. Surely they are associated with PD, rather than being primary symptoms, and many people have productive working lives for years after dx.

Depression in PD is often described as being 'without sadness' , and seen as not related to emotional events, but a general systemic depressed state that includes they physical. The truth of this may be arguable, but there are many other factors that may contribute, just as with any other person with a health condition, such as unexpected life changes, adjusting to new life conditions, and very importantly, the effects of being on powerful medication.

I know there has been an ongoing effort to have the 'clognition' aspect of PD recognised, and it has been an important aspect of PD advocacy, and something I personally welcome.

There is another side to this though, in which the old prejudices still hold sway, from the days when people with PD were committed to mental hospitals, more for their inability to communicate than anything else. These kind of hangovers from a previous era should not be any part of a blanket definition of PD - they still overtly exist in some countries, leaving patients disempowered and voiceless. It should be that each person is taken on his or her own merits, there should be no situation in which the words Parkinson's Disease can be used to lever a person away from a job they do well in, we are not a disease, we are people.

I agree with everything you said lindy. I am someone who lost my job decades too soon because there was a failure to understand by me, my doctors, the institution for which I was working (the University of Washington Health Sciences in all of its cutting-edge research glory), that Parkinson's symptoms were more than just my shaky hand. I underwent an almost total mental breakdown, and learned that I had lost my job the same day my divorce was finalized. Nine years since that date, with the help of experts like Dr. Marsh, we are still fighting the battle to get people to realize the full spectrum of mental health symptoms and issues that come with a PD diagnosis. People continue to lose their jobs because we don't loudly and powerfully speak the truth -- workers with PD must be accommodated in the workplace recognizing all of their symptoms. We can't bury it - we must confront it and challenge it. I think if there was a system in place, or even one person in the system, who could have recognized what was happening to me nine years ago I would still be productively employed instead of the huge drain I am on the public today.

I started the clognition website because of my frustration at my inability to continue to work. It won't help any of us if we try to soldier on without aid; and maybe conductor's friend should embrace the challenge that has been given her to fight an unfair system rather than the truth of the situation. Part of that is education and awareness of the nuances of PD - no two people are the same - she might not have any mental problems - but others do. The problem is lack of education.

There is another thread started by conductor that asks the question, "what does awareness mean to you?" Well, this is what it means to me - educate people, especially unaware health care professionals and others in position of power - about what PD is, that it can and should be accommodated, and that it manifests itself in many different ways, both physically and mentally.

We deserve more, but it doesn't help to rail against the system unless you are willing to do something to change the system. My part in trying to do that is to beat the drum on mental health. It is, perhaps, a narrow message - but one that needs to be heard.

We can't run from the truth.

Agreed, Lindy. In allowing such a broad sweep across all of us, we are labeled as OCD, depressive, anxious, apathetic...when the truth is that we may have one of these things going or none. I mean really, isn't apathy sometimes just a byproduct of depression - I know I don't feel like doing anything then. Also, keep in mind that these feelings have to significantly impact your quality of living, not merely be something that you feel on occasion.

Also keep in mind that cognitive changes and mental state or emotional health also reflect subtypes. TD PWP tend to be impacted less by all these things than PIGD subtypes. Further according to recent studies, YO peeps also have higher number of nonmajor episodic depression, meaning that it waxes and wanes often correlating to changes in meds or more symptom development. In other words we get depressed because we have this disease, not ipso facto we have PD therefore we are depressed. We also experience depression differently. see the excellent overview at Medscape (you may have to register but good info and free).

So does the licensing board of Texas know this? Are they likely to weigh all this and consider the likelihood that cognitive changes or depression/anxiety will even profoundly effect this particular person because of PD? No one can make these assumptions, when neurologists cannot even tell us our prognosis. Who is to say that with a 20-30% diagnostic error rate, my friend even has a correct diagnosis? Yet, we don't respect her enough to even establish a more scientific means to diagnose, stage the disease, and give an accurate prognosis on mental health or cognitive outcome, but instead will readily deny her the right to live a fulfilling life or to even respect that she is cogent and self-aware enough to realize that she may do more harm than good. Something is very skewed here.

Laura

I find it really odd that as PWP we are complicit in allowing others who have no expertise or experience in any of this to essentially decide our worth as capable, talented, contributing assets to our chosen professions and careers. Why is that we have one standard for how others treat us; we rail against cookie cutter treatment, yet we say oh sure steretype us when it comes to other aspects of the disease that are even less known. It really serves to show that deep down we feel inadequate because of PD- we shouldn't be trusted when it comes to other people...I see this in YO people who are hounded by their doctors and other PWP about driving. We should be supporting each other to remain as independent as long as we can.

I am not saying that we should not be aware of how PD may affect life and death decisions whether driving a car or treating a patient. However, shouldn't we have some say in this? It's really bothersome to me that we are treated as a sort of menace to society and that some of us actually believe that.

To turn around what Vicky said. Yes, let's face facts. Where are the facts that say we are more likely to harm someone? Where are the numbers on that? When someone produces alarming percentages of motor accidents or occupational hazards or malpractice statistics that directly correlate to PD related cognitive change, then I'll be seeing the other side of this. If someone can show me that I am more likely to cause an accident over an eighteen year old driver who habitually texts her bff each morning while on the expressway, well then, I will seriously consider giving up driving.

Now, to merely say that because of PD we are more likely to harm others with no clear evidence linking those things? That's a dangerous, slippery, slope- we are in effect letting society decide whether we have the right to leave the house ever again. I know this is taking it to extremes, but really where might it end? Didn't anyone see Nan's post about the rude driver who verbally assaulted her for having PD and driving? He yelled that she "had no right" leaving the house! So we are essentially agreeing with this mentality by allowing others to decide and set their own standard of how capable we are.

My 2 cents.

Laura

Laura -

Exactly. You can bet that Texas is not aware of the nuances. As to the inability to accurately dx or predict or track progression - that is the basis for the MJFF study they are just launching to track 400 newly diagnosed patients for five years through blood samples, cerebral fluid samples, brain imaging, and clinical examination to find "biomarkers" that biologically detect Parkinson's. This is a huge undertaking that will hopefully revolutionize our understanding of PD and how to treat it.

I learned from the MJFF Scientific Advisory Board meeting that I recently attended that the subtype question is hugely on the minds of the researchers, something they think of critical importance. Again, this longitudinal study MJFF is launching will go a long way in identifying PD differences.

I know there will be patient input into the study at all stages because I've just today been asked to participate as an adviser. Five years seems a long time to wait, but better late than never - I'm glad the initiative is now underway.

instead of putting pd under yet another label, (this time being a mental disorder), why cant the reality of what we live with come out. that being that pd can have symptomology of depression, anxiety, cognition impairment, dementia, etc AND the same symptoms can many times be created by the medications we take. it is not only ludacrist to catagorize pd as a mental disorder, it is an extremely toxic way of thinking for both the pwp and the caregiver. it is hard enough to put across to others what we (pwp) are feeling. it is hard enough to understand it ourselves. how can the disease be adequatly dealt with if the words coming from our mouths may be thought of as part of a cognative impairment and therefore are not taken seriously? this scares me as i have just left an emotionally abusive marriage and regard this as prime material for an abuser.

suggestion:
there are cognitive skills tests offered through an occupational therapist. i have taken two over the last 10 years and there was no change in my abilities which were rated as higher than people in my age group without a neurological disorder. this helps to keep track of the mental capabilities as well as a sense of assurance.

Laura - I understand your dilemma, but we can't destroy the label unless we confront the reasons behind the label. Just because you are depressed doesn't mean you should be discounted - we must work hard to dispel that conclusion, but not hide from the reality. The reality is PD is in good part a mental health disorder; that fact does not detract from or dismiss your humanity or need to be heard.

here's my take on the subject http://www.clognition.org/mg.htm

carey,
i must disagree here. depression is definatly a symptom of pd.. but it is just that.. a symptom of an underlying physical disease. to put pd in the mental catagory because one of the symptoms takes a mental form does not mean the condition as a whole is mentally based.
beautiful site btw

question..
is giroux your neuro carey?

Laura - this is a fundamental and good disagreement - for me, PD has been primarily a mental disease, and I approach it as such. It is different for everyone.

Why is everyone afraid of the label "mental illness"? Rhetorical, but real, question.

Wow! This is an excellent thread. All of the postings being well written and well thought out on both sides.
Here goes with my thoughts.

As a young onset PWP formally diagnosed with PD in my early thirties and now in my early fifties this is my take on things.

This lady pregnant with a diagnosis of PD. I would've thought that bringing up her baby with PD would be difficult enough on its own. I wish her all the best.

Soannia, to have been able to work for twelve yrs after PD was first diagnosed is wonderful but the truth is many of us can't keep up with the rest of the working world for so long and need help and retire earlier than that.

Driving, in retrospect I'm ashamed of myself for having driven (before my DBS in 2004) with dyskinesia. I'm ok now but during those few yrs when I became very reliant on levodopa to move I really shouldn't have been allowed to but stubbornly did because nobody stopped me. That I didn't have an accident was probably just luck. I put my children and other people at risk.

Mental health, now that thankfully we're all becoming more aware of the devastating effects some anti parkinson meds have on us. An inaccurate or what may well be accurate diagnosis of a mental illness can be unfortunately common as well as the very common incidence of depression in PWP.

These are just some things I've learnt over the yrs and like I said this is a great thread. Keep 'em coming!

Lee