The Placebo Effect

[JayPwP]

Found it interesting... Must contact the Doctor

youtu.be/XtSNBqC1z18(Not working as expected?)

[park_bear]

Very interesting video. Parkinson's is not merely a problem of bad mental "software". It is a problem of real physical impairment. However, habitually suffering this impairment trains us to expect it, which can turn into a reason for performing worse than we otherwise might, and why the placebo effect can be effective.

[Esperanto in reply to park_bear]

This concept of "self-fulfilling prophecies," where negative expectations can influence our behavior and outcomes, is perhaps equally significant. It highlights the intricate relationship between the physical and mental aspects of PD. Both the physical impairments caused by the condition and the psychological effects of living with it contribute to a complex interplay that can shape an individual's experience.

[MBAnderson]

good one

[crewmanwhite]

Placebo is very powerful and should be used by all health practitioners. Unfortunately, too many doctors use NOCEBO (you can't get well, the medicine won't work for you, meditation is for quacks) so too many people get worse just because they have been told they will.

Find someone who understands the value (and limits) of Placebo to help you.

[Esperanto in reply to crewmanwhite]

However, it takes two to dance the PD tango, not just the doctor. It is essential for PwP to be aware of how their expectations influence their experiences. Negative thoughts can contribute to the nocebo effect, while positive expectations can help harness the placebo effect.

Active participation is crucial: ask questions, share concerns, and remain open to the possibilities of improvement. Education about these effects is also beneficial. Long live HU! By adopting healthy habits such as meditation or positive affirmations, we can strive to develop a more positive mindset.

[crewmanwhite in reply to Esperanto]

This is true, but too many of my patients are surrounded by a number of doctors who pronounce hopelessness with great authority and, if the patients expresses hope or positivity, work really hard to knock that out of them.

Often the family are also influenced by the doctors and reinforce Nocebo.

[Esperanto in reply to crewmanwhite]

We have likely all encountered nocebo experiences with doctors, and let's not forget the well-meaning caregivers. Recognizing this pattern can empower us to protect ourselves and even find humor in it. Taking control of our own health may just be the most powerful placebo of all.

By understanding how expectations and communication can shape our experiences, we can approach our care with a proactive mindset. Embracing this awareness allows us to navigate challenges with resilience and positivity, ultimately enhancing our overall well-being.

[Albt4z in reply to Esperanto]

I've always been a positive person, (diag 2014 and told by consultant "it's a degenerative disease, there's no cure so come and see me when you're worse" - I changed consultant!) and although I have got worse over the last two years, my biggest hindrance, although very supportive in most ways, is my husband, He has spent the years since my diagnosis expecting the worst. He has withdrawn emotionally as if wanting to protect himself from future hurt. He thinks I am "in denial" Every day I wake up and feel ok, but sometimes take myself by surprise when I shuffle to the bathroom!

[Esperanto in reply to Albt4z]

This is very recognizable. I often receive the accusation that I'm in denial from my partner when I believe my symptoms aren't causing any problems. However, on worse days, I hear the same thing: see, you don't take your PD seriously. Still, I understand the confusion. After all, we live with the constant presence of PD. Others don't feel that and have to interpret it from our visible and invisible symptoms. Especially the latter can be a problem, but I notice that we are both getting better at dealing with it.

[amykp in reply to crewmanwhite]

My experience EXACTLY. And at a fancy "Center of Excellence" too--the Fixel institute.

Even my DH had trouble figuring out what what going on with them. (And he's a Dr. too.)

[JayPwP in reply to crewmanwhite]

Yes John... Agreed.

[rebtar]

My father had PD. The images of his experience shape my mostly unconscious expections as well as drs comments....

Have others watched a parent or other close person decline?

[TeamPG]

Saw this one. I assume you’re kidding about contacting your doctor? I don’t know about in India, but in the US that is generally a fruitless exercise since neurologists don’t know or focus on much besides drugs and DBS.

[JayPwP in reply to TeamPG]

I am kidding about contacting this doctor Lidstone from the Ted talk 😀

[TeamPG in reply to JayPwP]

Ah!🙃

[eschneid]

One of the best books I read early on that helps me battle pd is, "You are the Placebo," by Joe Dispenza. Highly recommend.