Personal insights into late stage PD thou... - Cure Parkinson's

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Personal insights into late stage PD thoughts

beehive23 profile image
9 Replies

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.

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beehive23
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9 Replies
park_bear profile image
park_bear

I'm so sorry this is what is going on in your life. This part, well said and all too common I'm afraid:

>"always increase, never decrease"...do not take my input seriously and consistently rely on pharmacology in a dangerous and haphazard fashion

Bolt_Upright profile image
Bolt_Upright

What a well written and profound post. "I truly regret anything i have done to slow the results of PD". Powerful thoughts.

One of the gifts of sickness is deep thoughts. We all know people that fly through life from glib event to glib event wrapped up in the minutia of popular fun, and then they get sick or have an accident and they are gone. People who are ill end up with a home school masters of philosophy (and that ain't nothing).

I am glad you are still here, and glad that you posted today. You are in my prayers every night.

Here is a link to the video you mentioned. I will watch it tomorrow: Unmasking Medical Gaslighting youtube.com/watch?v=-iGR4NT...

On a related note: Gaslight was one of my favorite movies when I was young. If Gaslight is your favorite movie, maybe don't mention that to your new bride. It creates trust issues :)

beehive23 profile image
beehive23 in reply toBolt_Upright

thanks for the proper link hang tough...

MBAnderson profile image
MBAnderson in reply toBolt_Upright

Thanks beehive and Dave. Important video.

So sad -- the status of health care in the US.

Exit International.

I image there must be a lot of doctors that regret their decision to become a doctor.

Gioc profile image
Gioc

Thank you Beehive, because after reading your post I understood that among us you are the greatest fighter in defense of the greatest human right :

3# the right to one's life.

against any type of coercion…

keep watch!

🙏

hang tough…

Gio

Alphasyn profile image
Alphasyn

You have an impressive story to tell, you should write a book about it (?)!

Esperanto profile image
Esperanto

Beehive I appreciate your honest and heartfelt message. It's rare to hear such extensive thoughts from someone in an advanced stage of Parkinson's disease. The contrast between early-stage Parkinson's and advanced-stage is evident. The belief, perhaps against better judgment, that the disease can be slowed down and managed versus the experience and fatalism that eventually nothing helps. Seeing actual improvement versus severe deterioration and residing in a hospice. The initial shock after diagnosis has transformed into a resilient "seize the day" attitude, where there are intense moments of happiness, and how you feel abandoned by your immediate surroundings and medical professionals. What can one say in response to that? Attempting to put things into perspective, like the situation of the blind lady I met this morning in the park or the journal images of the Gaza Strip, seems completely misplaced here. The realism, as Gymsack previously mentioned, is painful but also serves as a reminder for me to enjoy life to the fullest while I still can. Please continue writing; it is something you are still very good at! Merci. 🍀🍀🍀

Gigglers3 profile image
Gigglers3

Thank you so much beehive23. Wise words. I wondered what the thoughts were of pwp perhaps at a more advanced stage. We never hear from you. Please do be encouraged to continue to speak out and know that you are heard. And your voice; your thoughts and opinions are needed. I am at crossroads where my pd has got a lot worse but no one to turn to. My next Neurologist appointment is in February 2024. It’ll be a humiliating observation by Neurologist and 6 or so students when at the end of the consultation I will receive an increase in Levodopa, and will be asked please to put my shoes on outside; and told no need for me to take notes on what has been said during the consultation despite having told N that I have poor memory and told to come alone.

beehive23 profile image
beehive23 in reply toGigglers3

thank you. your humiliating experience is unfotunatel not isolated....industrialized medicine...hang tough

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