Parkinson's and DBS: the skinny

James Parkinson: 198 years on

April 11th is World Parkinson's Awareness Day. Yippee. I'm so thrilled, I can hardly stop yawning. This is gonna be a bit of a rant, but sometimes you have to call it what it is.

In the infancy of my husband’s Parkinson’s, I used to think ‘why doesn't anyone connect the concept that all movements stop during sleep…there must be an answer there’? Sweetly naïve, wasn’t I. Of course that was a life-time ago (actually, I do exaggerate – like to put it down to being numerically dyslexic), but really it’s a mere 15 years; just seems like a lifetime.

The sleep thing is sorta moot these days anyhoo. Pete (hubby with the ‘Shaking Palsy’ – I’ll get to that later) doesn’t sleep much – in fits and starts – at his desk – face in his dinner. Wherever, really. And if he sleeps it’s fairly tormented by REM sleep disorder and RBD (REM behavioural Disorder), apart from those odd moments when he enters the paralytic stage; REM – the fifth stage of sleep.

But that’s not why I’m here – oops, my bad! Today we celebrate the life and discoveries of Dr. James Parkinson….ya know – the guy who first scribed and described Parkinson’s.

His title; ‘An Essay on the Shaking Palsy’, published 1817. Here’s the gist of it:

"So slight and nearly imperceptible are the inroads of this malady, and so extremely slow its progress ... that the patient cannot recall the onset. The first symptoms perceived are, a slight sense of weakness with a proneness to trembling ... most commonly in one of the hands and arms." .. in less than twelve months or more, the morbid influence is felt in some other part. After a few more months the patient is found to be less strict than usual in preserving an upright posture."

... As the disease proceeds ... the hand fails to answer the dictates of the will. Walking becomes a task which cannot be performed without considerable attention. ... care is necessary to prevent frequent falls."

"The disease proceeds, difficulties increase: writing can now be hardly at all accomplished; and reading, from the tremulous motion, is accomplished with some difficulty." Later, "the propensity to lean forward becomes invincible, and the patient is forced to step on the toes and fore part of the feet, . . . irresistibly impelled to take much quicker and shorter steps, and thereby to adopt unwillingly a running pace. ... "The bowels which had all along been torpid, the expulsion of faeces requiring mechanical aid." Finally "his words are now scarcely intelligible ... no longer able to feed himself... saliva is continually draining from the mouth, mixed with particles of food he is no longer able to clear from the inside of the mouth."

Have to say – thanks a bunch, Doctor. I know, I know….it’s not his fault; by all accounts, he was a curious, studious man – both a rebel and a pioneer and very intelligent.

What really gets me is in near 200 years of medical advancement, we’re nowhere close to crackin’ this nut. I’m torn between being bored stupid by the whole thing, or wanting to up-side the precious noggin’ of Parkinson.

To relent, we have Levadopa and a gzillion enhancing compounds. We have DBS (my personal favorite), Apomorphine pumps and a squadron of promise in the form of gene or stem-cell….good luck on that; the blood-brain barrier is a chastity belt that will not be interfered with. There’s only four dinky areas of the brain that are unguarded, but to get there you’d need a chainsaw and a continent of lawyers….anyway, the patient probably wouldn’t see much benefit…or anything else for that matter, because his head would be on the floor.

Now, I have met some awesome Innovators, brilliant R&D and a load of amazing peeps in the world of Neurology & Neuroscience. And a few peeps that are researching the ‘cure’ for PD. There’s one guys who’s developed a system for nasal delivery of stem-cells, but can he get the grant – no. Others are looking at piggybacking stem-cells or other compounds via virus (one of the few things allowed through the blood brain barrier, ironically), but they must master the virus so it won’t keep breeding. All these people; I learn from them….blood-sucking bug I am. But why in 198 years has the answer not been found?

Maybe because everybody’s as tired of it as I am. It must also be considered that MONEY is made from Parkinson’s. Hard not to be cynical in a world of such promise as I’ve seen. And, my apologies to those that are earnestly trying!

So Parkinson – born in the reign of George III for crying out loud, must also be wondering…WTF?? Good thing his name wasn't something like Jerk or Igor; that’s about all that could make our position a little harder.