Pre DBS musings... making the blind eye see

Next week this time, I'll be in surgery for DBS at OHSU in Portland OR under the care of Dr Kim Burchiel, one of the worlds leading authorities on PD. I find myself anticipating the best outcomes knowing that it is not a cure but rather a symptom management with less drugs. I, too, dislike loading pills in my mouth all day every day.

However I think there has been a protracted discussion on this forum and others that discounts the merits and benefits of medicine for everything from PD to irritable bowel, pms, spinal alignment, ad infinitum.

I'm a retired Physical Therapist that enjoyed a 35 year career. I was initially very general but eventually became a manual therapist-joint mobilization. I also was a chronic runner, bicyclist, drummer and weekend mechanic maintaining a family fleet of 6-7 vehicles, one of which was my trophy E-type Jag. My practice was a 50+ hour week next to a US Army base in AZ. My symptoms started with dystonia and weakness in my hands; all of my work and leisure activities were going away.

Through my early career the diagnosis of PD was essentially dire with most victims succumbing to immobility within 2 years. That was pre carbodopa-levodopa days. Many of them were farmers

and ranchers that were not the kind of people that lay down and surrender. I personally knew none of them that beat PD despite their valiant efforts to do so.

Later in my practice I would occasionally see a PD patient because they were previously seen by me for ortho problems. I would usually encourage them to go to neuro facilities. I did observe that despite their determination to battle this disease with the fervor of an Army officer, they would eventually degrade. I did observe through this time frame that the advent of drugs and surgeries were improving the previous dire 2 year window.

Since my diagnosis in 03 and onset of symptoms in 98, I have tried to maintain as much of my functions as possible... use it or lose it. That is not in dispute in any intelligent discussion of all of our abilities and attributes. How many of us are competent at trigonometry today despite mastering it in high school? However I have degraded to the point that the dystonias are becoming persistent and forced walking enhances the tone-pain in my feet. I still manage stationary bike, yoga and BIG program from Beckey Farley PT PHD.

Making the blind eye see...

There is a position that is perpetually surfacing that implies that if we are just strong willed enough we can defeat PD. It is also implying that the traditional medical approach is self serving and greedy taking advantage of us via the sales of drugs. I will agree that strong will is vital and there are some less than altruistic physicians. But having worked in healthcare my entire life and having 3 of my children in healthcare careers, a MD, a DPT and a PA, the majority of providers desire to do their best.

I am not a computer techno-wizard but I think there is an analogy to the computer and the central nervous system. Simply stated, the mind is analogous to soft ware and the brain is analogous to the hard ware. The mind is that which is not anatomical or physiological. it is our perceptions-thoughts-information-will. It is the software. The brain is the anatomical and physiological hardware. Although we don't have definitive explanations of the interfacing, we know that there are tissues and locations that are associated with specific functions.

A prime example is anxiety and its relation to the amygdala. When we are under severe stress or threat the amygdala is activated producing sympathetic arousal-adrenalin- in the autonomic nervous system described as fight, flight, fright. The reactionary mind feels the fight, flight, fright software functions. The amygdala is the anatomical-physiological hardware. If the amygdala is damaged i.e. dead hardware , there is no software mind fight, fright, flight reactions. The software is dependent on the hardware.

There are events that can occur in traumatic brain injuries that produce blindness despite no trauma to the eyes. They typically are involved with swelling of the cerebral cortex in the occipital lobes of the brain that causes neuronal death of the site of visual perception.... hardware failure. The software-mind can't perceive the sensory input of the perfectly functional eye and optic nerves. This is permanent blindness.

What's this got to do with PD?? If the neuronal death of the substantia nigra-the hardware- is substantial there will be movement dysfunction comparable to the blindess. The software is just not likely to overcome the deficits of movement than the blind will see again. Another analogy would be a spinal cord lesion quadraplegic willing their extremities to function again. The software needs adequate hardware to function. The mind needs the brain to function. The extreme strength of the will can only accomplish what the brain-hardware will produce.

Since there is only one objective diagnostic test for PD, the DAT scan, we will never truly know who has PD until they undergo the test. If they do the scan and show substantia nigra lose and overcome the symptoms through strong willed exercise and diet, then we will have certainty. I would encourage those that are convinced that the traditional medical approach is so erroneous to step up and prove that they have defeated the lose of a functioning substantia nigra by having a DAT scan. You'll do mankind a great service and rewrite the management of this disease.

14 Replies

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  • True signs of early dementia.... lose should be loss.

  • etterus, if that's a sign of dementia, everyone who types or texts has dementia--LOL! Don't be so hard on yourself! Good luck and best wishes on the success of your DBS!

  • Well written, thank you. Good luck

  • THOUGHTFUL INDEED-MY DBS WAS ON NOV. 5TH-DOING GREAT--NOW ONTO THE CURE, DON'T YOU THINK?

  • Precisely... if not an outright cure for it remains a complex disease, I'm betting on signicantly better therapies within 5-10 years,

  • I had my first surgery for DBS on Aug 25, the second one will be tues (in 2 days). So far I have no regrets. I'll let you know how it goes next tues.

  • Just a few thoughts--I don't think that others are saying medicine does no good, but that there are other things other than traditional medicine that can also help us. I firmly believe this but I am not saying that someone can just chuck the meds and hope for the best. I think that doctors in this country are so "by the book" that they don't want to appear as a "quack" by suggesting that something other than a chemical from a drug company will bring relief for certain things. And I don't blame doctors in particular, but the drug companies who don't really have it in their best financial interest to have something other than their chemicals work to help people. If a readily available plant was found to cure a disease, would the drug companies be happy about that? I take all my meds as I should, but there is also proof that diet and exercise does a lot to help people in many ways and as long as something isnt harmful, then it is worth a try. Good luck on your DBS -- I just finished stage one and am hoping the future will be better for me .

  • Me too Buddy--Me too!!

  • Here is an interesting study from Parkinson's foundation.

    psychcentral.com/news/2014/...

    psychcentral.com/news/2014/...

  • Further more, to add to saik's last comment, a placebo dose can work for the recipient of that dose, not only if he doesn't know that he is only taking a placebo - and this is the weird one - but even if he does know his medication is only a placebo then the medication (placebo) may still work.

  • Very true. There's also the nocebo effect. A patient is giving a placebo and told of side effects that they develop for no good reason. A neuropsychologists percievd me as having this tendency and delayed my reviving DBS until cleared by a psychiatrist!

  • Very interesting. How long has the DAT scan been used? When I was dz, about 27 yrs ago, they did an MRI of the brain and spine to eliminate other diseases. I was told there was no test for PD. I assume this is a new test/scan?

  • I think it was available in Europe around 2007 and in the US 2010. I had mine at the University of Arizona .

  • Love my DBS-it has been a lifesaver!

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