I'm reading Howard Shifke's book.

[kaypeeoh]

In the early pages he makes the point that PD medications cause side effects like dyskinesia. For that reason, he never takes medication????

[MarionP]

Sounds a little extreme, rigid, and outdated... the caution of course justifiably so, but that's quite old and out of date, not taking into account the available trade-offs and being able to have gradations of benefits against risk, trade-offs and probabilities and the fact that these side effects can now be adjusted. Plus the biggest risk was always about tardive dyskinesia, which is only one form of dyskinesia.

Up until the last 15 or 20 years it was true once the tardive form of dyskinesia, which are the involuntary mouth and facial twitching ruminating and jerking, which people can see on your face, was uncontrollable and very often permanent.

But that was long ago and he is really pretty out of date. Now a professional would know that, was anybody else certainly wouldn't. In fact I see applications every day by people on this list that display a much more sophisticated and valid approach and knowledge than that conveyed by this one outlook you've mentioned that he takes. Which therefore doesn't exactly engender a lot of faith in his general credibility... These days, his mistake is actually a pretty doggone big one..

Anyway since that time, a lot of experience and science has allowed for much more delicate application and responses, much better understanding and many alternatives developed, medication alternatives that is, with much more ability to adjust and fine tune, so that in the main a great deal of tardive dyskinesia is less of a life sentence and adjustments can be made, as long as the clinician is paying attention and responding quickly and adjusting in a thoughtful informed way, so that most of the problems one would encounter would be because of any sloppiness by the doctor or prescriber...as a great deal more has been learned about medications that deal with dopamine...such as the existence of multiple dopamine receptors (there are five known and measurement capabilities have allowed different medications to be assayed for their different effects on the different functions of the different individual receptors... I think there are 5 and maybe 6 dopamine receptors, much better understood today) all having somewhat distinct and different signaling effects on dopamine systems. For any of the particular now larger group of medications, all with now measurable multiple effects on the different functions among individual dopamine receptors (called D1, D2, etc.) available on receptors along with the ability to definitely measure with technology accurately their different effects on the different receptors, early observation can now be paired with effective adjustment to tailor for a person. Really quite remarkable actually.

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So the mere appearance of a tardive dyskinesia doesn't at all mean that things are permanent and uncontrollable from then on even if the medication is stopped. And really that's only about the tardive dyskinesia, not other dyskinesias. As I mentioned before, one is more likely to have severe problems or prolonged problems because the doctor is sloppy or insensitive or not available, and by doctor I mean whoever is taking responsibility for writing the prescriptions and providing the necessary adjustments and continuity of care until the right mixes is found... so unless one is going to automatically assume that the doctors are crap for the prescribers are or the system doesn't allow for the necessary early on very close and responsive continuity and follow up during the adjustment phase of starting a medication (which might actually require weeks or months of quick available back and forth communication for some cases to iron out the side effects while they can be) it seems to me that response of his is kind of outdated and sacrifices a lot of good while taking much less risk today. That's a lot of benefit to give up for what is really today unnecessarily broad brush kind of thinking, leaving a lot of potential benefit on the table to people who are suffering mightily and maybe needlessly .

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So if this is evidence of his kind of thinking and application, I think it would make much else he has to say suspect and subject to demonstration before I would give him too much credit about anything.

[park_bear in reply to MarionP]

Tardive dyskinesia is a problem with psych meds. Levodopa induced dyskinesia is quite different. It only occurs when there's levodopa in the system.

[MarionP in reply to park_bear]

Almost correct.

[Always_hope in reply to MarionP]

My husband has Parkinsons. In the last couple of years Ive met/seen quite a few people with Dyskinesia because of their medication. Most with good Neurologist and some under care of a pharmaceutical company to test/experiment.

[Bolt_Upright]

I thought he did not take medication because he cured himself.

[kaypeeoh in reply to Bolt_Upright]

I read that he used TCM (Traditional Chinese Medicine) to diagnose and treat himself. I studied acupuncture so I can at least say it's not hokum. I've seen acupuncture work on my animal patients.

[Bolt_Upright in reply to kaypeeoh]

And qi gong also, I think. youtu.be/hwde5XxWitM?si=NX3...(Not working as expected?)

[park_bear in reply to Bolt_Upright]

He gives a more complete and convincing account of his symptoms in the video than in his book.

[Edperio in reply to Bolt_Upright]

correct. That’s what he talk about Plus a lot of other good things