sound familiar to anyone?
 

even mentions the schizophrenia-like side effects and does blame the med more than the illness. paranoia? yes but it's justified in many cases...people do look at you strangely and think you are weird.

http://michaeljfox.org/newsEvents_pa...cle.cfm?ID=498

paula

In 2005, after five years on C/L, amandatine and stalevo, convinced my wife of 25 years was plotting to destroy me, I filed for divorce, left my three lovely daughters, gave up my profession and became disdainful of those who had accepted me.
Alone I became obsessed with money spending my time gathering aluminum cans for the little they brought. Earlier I sold my cherished library of 700 books
for 225 dollars and took my ex back to court twice to correct what I regarded as an unfair settlement. During this "economic war" I waged against my family I nearly bankrupted those whom I loved.
The impact the drugs were having on me, became appearent last winter, when 2-3 months after upping my C/L by adding three 25/100 I began hallucinating and shortly started acting out on my paranoid thoughts. Convinced I was right I closed my mind to any evidence that contradicted the unreel world I had forged.
it wasn't until I reached rock bottom, with the help of good friends I came to terms with the depths of my paranoia and reached out for help. I can't say I'm totaly free of my fabricated thought patterns but by backing off the C/L and taking an anti psychotic I''m coming to terms with reality.

little rock i can relate
 

my family broke apart too, my husband and i are so different that we wonder why we got married. but the PD hit right when my daughters were teenagers. the youngest got jipped and my husband says he became a single parent when i got on the computer.

in many ways he is right, altho he was unsupportive and to this day isn't really interested in all that i do with Parkinson's. i took my daughter to BIO, so she could see first hand what we do at confernces. she learned so much - understands that i was going thru something at the same time that she was growing up, and the family has reunited after 6 years of separation between my husband and myself.

it's not perfect, we are very different, but we're trying. i tried to get my husband to read the article above but he hasn't yet. i've been saying i wake up with pd and go to bed with schizophrenia for some time. i haven't actually broken from reality(yet) but lots of panic and anxiety that comes from sinemet overdose - it's all meds.

PD causes the pain and physical suffering, the meds cause our behaviors, I'm a mess, but keep my brain busy. Gotta keep going or it's over..

the family having knowledge is imperative.

paula

semantics is crucial
 

The language people use both reflects and propagates their perceptions. Semantics is crucial.

I started noticing this trend quite some time ago - it is the conflation of side effects of levodopa (mostly) and symptoms of the disease.

I noticed it first with dyskinesia. can't remember where I saw it first, but a quick google search just now turned up the "dyskinesia symptom report" on patients like me, and the opening line "The symptoms of Parkinsons Disease are dyskinesias..." on a site called pallidotomy.com.

In the realm of scientific papers, there are numerous references to "motor fluctuations/motor complications/dykinesias in advanced Parkinson’s disease," which always strikes me as odd, because, also in scientific papers, there are statistics that say 50-80% of PWP will develop motor fluctuations and dyskinesias within 2-5 years of commencing levodopa therapy. Are people generally already advanced at the 2-5 year mark on levodopa?

But, more to the point, the phrase clearly leaves out the critical detail that these phenomena are drug-induced, and in so doing, gives the misleading impression that they are inherent to the disease.

Likewise with the headline on this article, which refers to Parkinson’s psychosis - and buries the fact that it is, in fact, *medication-induced* psychosis 4-5 paragraphs into the article.

Yet another side effect sliding into symptomville.

And why is this disturbing to me? Well, consider tardive dyskinesia, a side effect of anti-psychotics that is not being mistaken for a symptom of psychosis.

There is a great to-do made about tardive dyskinesia because it *could* be irreversible, but
a) the risk of developing levodopa-induced dyskinesia is far higher than that of developing tardive dyskinesia,
b) tardive dyskinesia is not *always* irreversible,
c) could someone explain to me the logic behind using the fact that an adverse event is reversible as justification for never reversing it, and
d) would all of you who have ever been able to stop taking levodopa, or know someone who stopped, or heard tell of someone who stopped (without undergoing brain surgery, I mean) please raise your hands?

At the first sign of tardive dyskinesia, the medication is stopped, if at all possible.

Surely the bare naked symptoms of untreated psychosis rival those of PD for potential to interfere with one’s life.

And yet levodopa is never stopped. Med after med is piled on until we are drowning in pills - which would be ok, if they worked - but they don't, not for any meaningful length of time in what is, on average, 17 years of life with the disease.

And it is no secret they don’t work – see quotes below:

“Strategies to treat levodopa-related motor complications are only partially effective, rarely abolishing motor fluctuations or dyskinesias. “ Poewe, Neurology, Feb ‘09

and

“…eventually the patient will lapse into the final and irreversible stage of the natural history of levodopa efficacy, a period with complex motor fluctuations that are extremely difficult to tame. [the authors term this period “paradise lost”] Melamed, Movement Disorders, 2007

In late 2006, early 2007, there were 142 trials listed on clinicaltrials.gov that were addressing movement issues, symptoms or side effects, in PD (several of which have since failed.)

Almost 60% of those were addressing levodopa’s side effects.

The bottom line, as I see it, is this: symptoms, until we find a cure, are inevitable - well, to the extent that they can't be treated with medication, they are inevitable - and so are side effects, when they are conflated with the disease proper – not just inevitable, but inevitable *to the extent they can't be treated with [*more*] medication.*

If a cure is possible, then a better symptomatic medication is definitely possible, and a lot faster, too. But that possibility is lost when devastating side effects come to be regarded as symptoms of the disease.

Dr Ronald Young
 

stated in my group that DBS allows us to cut our meds in half and an 80% inicrease in on time is proabable too. We would not be having this conversation if neurologists wrongly did not disparage DBS so much. The bottom line is IF you get a good team your chances of a good outcome are excellent. So many people go to their "neighborhood" DBS team. THis can be a prescription for disaster. EVEn if they do get the surgery correct, they screw up the programming. Its frustrating!!! DBS is the best (and only) non-pharmacological treatment for PD we have. DBS works! I, and many others, are proof of that.

Charlie