(3) PD experiment in a movie

Me and PD

My life with Parkinson's Disease (PD) - and it is reasonable to assume that it applies to others - has both comic and serious undertones. It is not an elegantly crafted Shakespearian play but contains elements of a soap opera. 

Like a soapie, I have recurring status and play different roles. Some days I am Ari, fighting the effects of Bradykinesia. This term refers to my slowed movements, shuffling, dragging my right foot when walking, constant tremors, occasional rigidity and freezing of actions. When I see my reflection in a shop window or full length mirror, I resemble an actor attempting to mimic someone who's had a stroke. Also, I have been asked why I am angry because, of late, I often have little or no facial expression. 

Regarding the recurring status, on other days I am a parkinsed person wrestling for seven years with Ari and his damned alternative, drug-free approach to PD. This involves my practitioner-research approach to PD where I first observe a PD-related issue, then try to figure out a practical solution based on my experience and common sense before trawling the internet or probing medical research. One example would be how to deal with the freezing of movement when dressing, by examining the role of muscle memory and association: but more of that later. Let me describe two experiments which you might find interesting and informative.

REVIEW: AWAKENINGS, the movie   

I have come across two extreme examples of the unpredictable nature of PD. The first is Awakenings available on pay-TV channels, a memoir of neurologist and prolific author, Oliver Sacks, that was a book made into a movie in 1990 starring Robin Williams and Robert De Niro. The second is a BBC documentary  entitled The Parkinson's Drug Trial: A Miracle Cure? First let's look at the movie.

The movie Awakenings (1990) is about seemingly catatonic patients in a psychiatric hospital in New York. The patients are mostly victims of encephalytis lethargica, an epidemic that might have started sporadically across Europe during the early 1500s and was then identified and labelled in the early 1900s. This neurological syndrome presented itself in two phases, the latter clinical phase resembling PD, which may explain why a PD drug was used on the patients.

The movie starts with a young boy gradually becoming dysfunctional and one sees the impact on his life as a teenager. Fast-forward about 50 years and that child is one of a group of adults, played by Robert De Niro, who appears to be displaying PD-like symptoms in a psychiatric hospital. In an attempt to bring him and others out of their catatonic state, an experimental drug called L-dopa is prescribed by Dr Sayer, played by Robin Williams, who has already made startling observations of some of his patients. Although L-dopa was developed specifically for PD, the symptoms presented by patients with encephalitis lethargica are similar, hence the doctor's decision to prescribe it. Dr Sayer, prior to joining the psychiatric hospital, was a medical doctor and serious researcher with a healthy regard for what is measurable and, consequently, what may be accepted as evidence.

What is evidence?

In his new job at the psychiatric hospital, Dr Sayer appears to turn a corner in his career. He starts to question the notion of evidence when, in an attempt to justify the need for L-dopa to be prescribed, he is reminded by his manager that the patients have been immobile for many years. Dr Sayer responds stating "...that people are alive inside...". The manager warns Dr Sayer not to expect the hospital to fund the L-dopa "trial" that would cost around $12,000 per month. However, hospital support staff, encouraged by his humane approach and his persistence, start donating small amounts of their own money for the "trial" to begin, which appears to put pressure on management. Hence, the manner in which evidence is gathered, structured and accepted, differs from fraternity to fraternity.

The L-dopa conundrum   

Unfortunately, once his patients take L-dopa it is obvious in the movie that Dr Sayer is unable to calculate a prescribed dosage required by each patient. It is interesting to note that in 2013, a journal article entitled The L-dopa Conundrum questions the presence of L-dopa and similar drugs by asking: "Should newly diagnosed patients delay taking L-dopa as long as possible or seize the day?" The question is being posed more than 50 years after the launch of the PD drug!

Next we'll examine the clinical trial and the use of GDNF and indulge in some reflection on both.