In a recent thread there was mention of the 'symptom' of something which I will call here abulia/apathy. A kind of overwhelming lack of motivation, with a flatness in the way living is experienced.

This is something which happens to me to a greater or lesser degree, and there have been many posts over the years about this, or mentioning it as part of PD depression, or especially in elders with a lack of enjoyment of life. So something that many experience and which is to some degree (I think?) seen as part of PD.

I did not experience this prior to medication, in fact the very reverse, I was highly motivated, in fact driven, (something that has often been described in posts) and various changes in medication have either triggered this state, or ended it. So is it the medication, or combination of medication, or is it integral to PD? As time moves on and we get further into treatment it is much harder to see what is the disease and what is a side-effect.

Given that PD is slow developing, and some neuros do not start patients on medication straight away, I wondered, and please hold this thought, does anyone know whether these patients are being 'looked at' in any systematic way, not just for this particular issue/symptom/sign but any others that might differ from those in medicated patients.

To me this seems a very important area to be explored......... it's a long time since doctors were really seeing people, at least in the developed world, who have had PD for a while, and are not on some form of dopamine replacement therapy.

So my unanswered questions are:
Is abulia/apathy part of PD or a side effect of medication?
Is anyone looking at positively diagnosed unmedicated patients?

Do you have unanswered questions, and what led you to them?
Do you think there is work going on that addresses your questions?
Or would you like to know if there is...........

Lindy

One thing that I have been wondering about is the fact that my symptoms when "off" are very similar to the symptoms that sent me to a neuro in 2000, predominantly trouble walking. The time spent "off" has increased but the level of misery while in that state is about the same.

One would think there would be movement on both fronts - call them "quality" and "quantity" - as things degenerate. I have taken only sinemet and requip for any length of time over the past nine years. Take too much of either of those and the symptoms are similar to the symptoms that you are trying to treat. The "acute" effects, as it were. The "chronic" effects of taking a normal dose but for a long time is something we don't know.

Lindy,

Hi. This is a fantastic question! I was really beginning to wonder about this myself over the past few days- especially since my physical symptoms seem to be more varied than they ever used to just over the course of 3 months in adding Azilect and Mirapex to what was once monotherapy with Sinemet- I never experienced some of the disabling physical side effects that I now have. I largely suspect that it's related to medicines and it could be how they interact with our dopamine compromised state.

I too used to be quite driven and passionate about a lot of things, especially my career, while I still feel motivated and concerned, there is a cloudy veil of "meh, who really cares" muting these feelings. I largely think it's Mirapex related. Do we really know what these drugs are doing to our psyches in the long term? Why isn't anyone studying it in a comprehensive manner? Most research on behavioral or psychological aspects of PD seems to focus on anxiety and depression, but as you've insightfully pointed out, I think there are other aspects which are largely ignored.

I'm sorry you're experiencing this sense of apathy. I don't know if you take an agonist or have stopped one. I have experience in stopping Mirapex, and there is a sort of "brain fog" that lifts slowly as you wean off the drug. I have already stopped Azilect and will be stopping Mirapex, like you, I am tired of not knowing what is PD and what is a side effect.

This research void is frightening- given that some of these drugs destroy relationships as a side effect, don't the pharmas owe us some sort of explanation, at the very least? I've seen a few studies, but nothing systemic, like you suggest. It's bad enough to deal with PD, let alone deal with broken families and lost relationships over what is touted as "therapy". I feel this is reflective of a profound lack of belief in holistic medicine- the body and soul disconnect of Western medicine. The belief that we can just keep adding pills to counteract the side effects of a pill astounds me, yet that is just what doctors suggest.

Do you find that exercise helps? It doesn't make a difference in me- another clue that it's a chemical issue.

Best,

Laura

Lindy -

I believe apathy is related to the PD itself; it can also be related to depression. Dr. Laura Marsh, a psychiatrist at Johns Hopkins has written about PD apathy. Here's one passage from her article, Neuropsychiatric Aspects of Parkinson's Disease, on my old website, Clognition.org (that I have not been keeping up to date due to PD/depression - related apathy!). She says it seems to be related to bradyphrenia and bradykinesia. The article will lead you to other sources on this topic.

Apathy, defined as a state of diminished motivation,
can present in PD as a symptom of major depression, delirium,
dementia, or demoralization or as an independent
syndrome.60 With the latter, the patient’s inactivity and indifference
are particularly frustrating for families and caregivers
who frequently perceive the patient as depressed.
Two studies have examined apathy in PD in detail.61,62 In
the earlier study,61 depression and apathy coexisted in 30%
of the sample, and 12% of subjects had apathy alone. Compared
with the euthymic PD patients, there were no differences
in age, gender, duration of PD, or motor impairment,
but the patients with apathetic syndromes tended to have a
later age-at-onset relative to those with PD plus depression.
Also, the patients with apathy had specific deficits on neuropsychological
tests, although this finding was not confirmed
in the later report.62
The features of apathy are analogous to other aspects
of PD, in particular bradyphrenia and bradykinesia,63 suggesting
that some cognitive, behavioral, and motor features
in PD are related to shared pathophysiology. Evidence that
bradyphrenia is related to neuronal loss in the locus coeruleus
implicates a role for noradrenergic dysfunction.64,65

I have heard the apathy described as when someone with PD who absolutely loves golf, can literally walk out the door to play, yet continues to only sit on the porch - even in a good mood.

My major manifestation of apathy is being off, yet unwilling to open the drawer to take my meds - rather keep watching TV.

When I was first diagnosed, I was on Mirapex only - and decidedly NOT apathetic - more peripatetic!

As for finding people just dx'd but before meds - huge problem; one of the major hurdles in MJFF's biomarker study is that it needs 400 of these "de novo" patients.

Laura -

Didn't see your post until after I posted. You said:

"I don't know if you take an agonist or have stopped one. I have experience in stopping Mirapex, and there is a sort of "brain fog" that lifts slowly as you wean off the drug."

I had the same experience - "brain fog" lifting when I went off Mirapex some 6 or 7 years ago. I could think more clearly - but also became more apathetic. The Mirapex had given me energy, but taken away my critical thinking.

Carey,

Thank you for explaining PD apathy and sharing your Mirapex experience. I apologize for taking off and blaming Mirapex for everything- I just have had two bad experiences with it. I understand that for some it works quite well. My main point is that we use this drug quite widely in early treatment of PD, and we don't know how this is affecting our brain chemistry long term. Is it actually good for neuroprotection and/or how is our overall emotional quality of life affected? These are questions I'd love to see in longitudinal studies of this drug in PD and RLS.

Laura

Laura - no apology necessary - I was just affirming your experience, which I think is widely shared. We do need to know more about the agonists (I was on only Mirapex or Requip for 6 years); they were personally damaging to me, and my neuro is very sympathetic. I guess this is one down side to the drug approval process - we want fast approval of new drugs - there's usually no time to wait for long term outcomes. In some ways, we are all guinea pigs when it comes to drug testing.

Tnank you for the replies, and I hope that other questions will get raised here too, these are just the ones I have. In terms of guinea pigs, I do think thats what we are...... except that they would get watched more!

Carey, I do have the bradyphrenia and bradykinesia in good measure, and totally relate to the golf analogy, but have had several med changes that have resulted in a lifting of this apathy, in fact the less cocktail there is the better. I have only ever been on Sinemet, Sinemet CR and entacapone (comtan) directly for PD, though have been on other stuff to help me tolerate comtan better. The CR made me extremely apathetic and it was a revelation to come off it - I had thought that was me for life. I recently came off an anticholinergic drug for neurogenic bladder, and while I have regained intellectual capacity, and think and converse in a clearer way, I am more inclined to do exactly what you describe and procrastinate horribly about nearly everthing! When in hospital a couple of years ago I was taken of all meds and all of those things disappeared - but I was slower than a sloth, and looked about 20 years older......

Laura, your views on drugs are so valid, not just for PD but so many other things, I have had over the last 18 months drugs to counter side effects and more to counter them. After experiencing some very unwelcome things, the worst being fluid retention and liver and kidney issues, I took myself off them, the cure being worse than the problem...... I miss that passionate bit too,

Rick, I'm in a similar position, wearing off has always been an issue, the PD is breaking though all the time and any increase in meds results in trouble...... it's a very fine line......

Thanks again for replies, it a big issue that needs opening up.....

Lindy