Gaslighting...(Don't gaslight yourself, dont allow others to gaslight you). (Gaslighting is a form of psychological abuse in which a person or group causes someone to question their own sanity, memories, or perception of reality. It is an insidious form of manipulation and psychological control. Victims of gaslighting are deliberately and systematically fed false information that leads them to question what they know to be true, often about themselves.)
A Point of View from someone with PD to those with PD especially late stagers....and of course the 2am crowd..
At a certain point when you find yourself backed into a medical corner.....one might ask oneself.....do i keep allowing specialists to continue, endlessly, to run tests that are often dangerous to not only your physical health but your mental wellbeing, often involving pain, enormous amounts of stress, and resulting in more often than not, debilitating, painful procedures, snake oil salesman run rampant on the net, culminating in the inevitable situation we all face...dying. I ask myself, "how do i wish to die?" I have declined brain surgery both DBS and FUS, heart surgery, dozens of medications with enormous potential side effects, sterile white hospitals, respirators and push button help lanyards around my neck while at home. Tests and procedures that literally extract the life out of me in a quasi hopeful result, i can feel it. Of course none of us can predict the intricacies leading up to our own inevitable demise. To address the issue while i can, at the point of here and now...how do i want to die? Drugged and spoon fed and tested and medicated and bankrupt on combinations of chemicals ranging from salt From Himalya, herbal cure-alls, pills, supplements etc etc. or the "old fashioned" way, what happens is at it should be. Torture and death.....or just death.
My current DNR....no ambulance, no added drugs or increases of current patient verbal or written approved med regime, no hospitals, no alpha and beta blockers including all of the antihypertensives, no CPR, no dextramethorpin/cold medicines, no ER, no Hospitals, no g-tube, no nursing homes, no cardio-pulmonary assistance, no ECMO (Extracorporeal membrane oxygenation), no icu, no tracheotomy.
I am 55, early onset Parkinsons disease, I had my first complaint to Dr. of tremor at 35.....ignored. I am told I am experiencing......PD induced respiratory failure, and heart failure as my musculature becomes rigid and of course all of the accompanying more common PD goodies....divorce, frustration, alientaion, disintegration of caregivers such as family and friends, literally lists of PD "nuances" . I won't allow Doctors to torture me until i am dead, do not drug me until I don't know who I am, do not feed me whilst i sit lifelessly and drool and stare. My "specialists do not communicate, consistently overdose me on medications....."always increase, never decrease"...do not take my input seriously and consistently rely on pharmacology in a dangerous and haphazard fashion, prescribe, recall, replace, change and repeat. In my experience if you see 6 specialists, you get 6 varying contradictory opinions as to how to proceed most often resulting in passing the patient off to yet someone "more specialized". "If you pay them they will come" STOP GASLIGHTING.
I truly regret anything i have done to slow the results of PD.....i started the torture myself albeit well intentioned.......... my feelings have cultivated into questions of a philosophical nature....thought experiment....would i rather be slowly crushed by a train moving at .01 mph, toe to head.....or a train moving at 100 mph........
Ref. See:
Unmasking medical gaslighting
YOUTUBE.COM
Unmasking medical gaslighting
Join Tami Burdick, a patient advocate and author of Diagnosis Detectiv
or my post....hang tough until you cant then do something else.
Whats your medication regimen for PD?
To the newly diagnosed, one more time, straight talk
Have you ever had a head trauma, before your PD diagnosis?
Understanding Parkinson's
