Viral Parkinsonism may be considered secondary as a movement disorder following infection by the influenza, H1N1 virus, Bird Flu, streptococcus, and Epstein Barr virus (causes the common mononucleosis) and Encephalitis Lethargica. I am beginning to believe that the encephalopathy is the key in the ignition switch for quite a few of us. The infections end up with a manifest Parkinson's- all cardinal signs present, and there is a lot here we can sink our teeth into:

-In many cases, patients respond to levodopa
-In many cases, patients fully recover with a round of steroids
-Others stabilize and stay static while others progress.
-Upon MRI, the basal ganglia shows lesions
-the inflammatory immune response results in aggregation of alpha-syuclein
-this virus and immune response triggers the cascade event now considered the prevailing disease model. The activity and inflammation persists long after infection is gone.
-anti brain anti bodies are present in most cases.

I am going to take a closer look at lethargica because it offers some features hitting closer to home for us:

-in this illness that occurs post or with viral infection, the parkinsonism can be indistinguishable from what we call idiopathic pd: including dystonia, excellent response to levodopa, and dyskinesia.

-it can occur up to 20 years after the initial infection, most appear within 5-10 years.

-there is a case with a man who lived with an encephalic brain for 71 years! He experienced his trigger illness at age 3 and presented with a progressive Parkinsonism at age 40!

Lest anyone still be on the fence on the auto immune connection with PD here is a an interesting assessment of lethargica and an alpha-synuclein little kick in the butt:

http://onlinelibrary.wiley.com/doi/1...21664/abstract
Contemporary encephalitis lethargica presenting with agitated catatonia, stereotypy, and dystonia-parkinsonism


Both patients suffered concurrent hyperkinetic and Parkinsonian features resulting in therapeutic challenges. Bradykinetic features responded to dopamine replacement therapy and both patients also had adverse affects to dopamine antagonists (oculogyric crises plus neuroleptic malignant syndrome). Investigation was unremarkable other than the presence of CSF lymphocytosis and oligoclonal bands. Despite prolonged in-patient stays and intensive care management, both patients have made complete recoveries. We believe these cases support the hypothesis that this syndrome is an inflammatory encephalitis that specifically effects dopamine neurotransmission.


Monoclonal antibodies against Epstein-Barr virus cross-react with alpha-synuclein in human brain.Date: 2000

Using antibodies generated against the latent membrane protein 1 of Epstein-Barr virus, intense immunoreactivity of Lewy bodies (in PD and dementia with Lewy bodies) and glial cytoplasmic inclusions (in multiple system atrophy) was demonstrated. ELISA and Western blotting techniques confirmed that this immunolabeling was due to cross-reactivity of the antiviral antibody with alpha-synuclein, a neuronal protein implicated in the pathogenesis of PD. This example of cross-reactivity between Epstein-Barr virus and alpha-synuclein may bear implications for further elucidating infectious or autoimmune mechanisms in PD.

Who is to say that one of us did not present with an encephalopathy? I did not have an MRI until 3 years with my first neuro. One is not always symptomatic with it and as we saw you can live with it a very long time.

This really does substantiate that diagnosis we have means both nothing and everything. Nothing in the sense that it is junk and we have to fumble around putting pieces together ourselves. It means everything because we have been marked; it means no disability insurance, no private insurance , no long term care insurance. It means you quickly become marked by your employer as a liability. It means your life has fundamentally shifted out of your control; and the person who has done this to you knows less about what is going on than you likely do. I'd say if they can't be bothered to test us or for anti bodies or give us an MRI just to rule out encephalitis and recovery with a round of steroids, than they have no business ruining my life with the label "idiopathic parkinson disease". Give me the safer, vague label of "Parkinsonism" any day. Medical science is capable of far more.

Laura