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.