I just got out of Georgetown University Hospital where I went to adjust my Parkinsons Medication. During the 12 days I was there I experienced a wide range of abuse, neglect, and psychological torture including:
I was not given food in ER after 7 hours of waiting (finally policeman gave me food). The ER was very stressful, due to extreme overcrowding, babies crying and water dripping from the ceiling but it is only route to be admitted. Stress is known to be very harmful for Parkinsons Patients
I was labeled with several false psychiatric labels by psychiatrists while standing in a narrow isle near my cot in the Emergency Room, while the man next to us complained and demonstrated the he could not breathe. I was not told this at the time. But false diagnoses influenced the remainder of my time at the hospital.
I was restricted to a small room for 12 days. Requests for walks in hallway or outside and Physical Therapy were denied with excuses involving the pandemic. Lack of exercise is known to be very detrimental to Parkinsons patients. Those who have not been locked up like a bird can not appreciate how harmful it is. Prisons used to restrict prisoners in this way but stopped because it almost always caused mental illness.
Nurses did not respond to buzzer calls at all about a third of the time. The same buzzer system is used for low priority calls and high priority ones. Twice nurses did not pursue getting a doctor even when they were told it was an emergency. My concern over this issue was labeled as a “fixation.” I repeatedly was denied blankets which forced me to shiver in my bed all night. When my nostrils got stuffed no cold medicine was provided. When I requested water none was brought to me.
I had the worst diarrhea of my life 5 times while at the hospital. I had to sleep in bed in a pool of shit because the nurse would not clean it up. The hospital failed to vigorously pursue lab testing to determine the cause. This something no person should have to experience.
Twice I was given too much diarrhea medicine. The first time experienced severe stomach pain. The second time I suffered loss of coordination and inability to balance. No one showed much interest. But my balance has still not fully recovered.
I called police via 911 due to lack of timely buzzer response. As retribution Hospital staff came to room and removed the Hospital phone.
A staff member also tried to grab my personal cell. The staff did not call the poison center as a decent person might or vigorously pursue finding a remedy for the overdose while keeping me informed.
When the DC police arrived they did not come to me but instead went to the hospital nurse, even though I was the one who had called. I pointed out that it was simple to verify the veracity of my claim that help calls are left unanswered by just speaking to patients. I was told that police do not have jurisdiction and that hospital would have to investigate. My concern over the lack of an emergency buzzer was cited as proof of mental illness(a fixation).
I was told a meeting to discuss my release would take place in my room (which I was not allowed to leave) at a particular time. No one showed up but a meeting was held in an adjacent room where I could hear bits a little about me being discussed. This childish prank may have been constructed to bolster the claims that I had paranoia.
In summary, I was held in the hospital against my will, even though it was a voluntary admission for drug adjustment. I was constantly given many pills on an empty or irritated stomach. Unable to get contiguous sleep by nurse interruptions around the clock a couple of bad nurses tortured me in the ways listed and held prisoner in the tiny room. Under duress I agreed to take antipsychotic medicine. I am very damaged. I’m convinced without the heroic efforts on the part of my wife I would have died.
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pmmargo
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I am so sorry you had to go through this. The only thing I can suggest would be to consult with an attorney to see if you have legal redress.
Unfortunately this not the first time I have heard such stories, although this is the worst. People with Parkinson's should never go to the ER for medication adjustment because they are completely unequipped to deal with Parkinson's.
“Not the first time” :My experience not as dramatic:
Totally believable in its entirety.
My former neurologist labeled me addicted to carbidopa levodopa. Refused to adjust my med. I’m ten years Parkinson’s. I needed two tablets of 25/100 IR as single dose. A newly dx patient normally is prescribed one tablet. I had to insist and this involved a second neurologist and a GP.
Believable for sure!! I have several horror stories, to tell, about my experiences, but won’t explain at this time! There are memories so painful, that even to reiterate them, would cause me anguish!
That's what we're here for. If you would have asked, we would have told you the very last place a pwp should go is to an emergency room -- even in an emergency.
I just filled out a TIP form for the FBI. I guess I am about to find out whether each person needs to carry their own gun or if there is someone out there who will protect me. The DC police were really disappointing and seem to have no interest in the truth or protecting me. Maybe PD people need their own police force which moves from facility to facility arresting abusive nurses.
I had one abusive nurse, that told me off, and completely lost it, when I was in hospital. I rang the nurse for assistance, every time I had to get up, for a bathroom visit! There were written orders, from the Doctor that I was not to get out of bed, without assistance. With Diagnosed PD, and Cerebellar Ataxia, I was having big time balance problems, at the time, where I had fallen, in the middle of a street, and had a concussion a few weeks previous to this hospital visit! After about the third time, of me calling for nursing assistance, on the night shift, the nasty nurse yelled at me, and said I was quite capable of going to the bathroom, on my own, without assistance, and she refused to help me the rest of the shift. The next day, she was supposed to get a port ready, for me, on my arm, because I was scheduled for surgery, and she came in, gave me the evil eye, and proceeded to cut into my arm, and, I guess, missed the spot, hit an artery or a vein, and there was blood 🩸 spurting everywhere. Other nurses had to come in and stop the bleeding, and get me prepped for surgery! I never saw that particular nurse, again, the rest of my stay ( a week ), at the hospital! Incompetence, like that, is unacceptable, and can be terrifying for a vulnerable patient!!
Im off of Mirapex now. I take 3 95 mg Rytary 4times a day and also the nuplazid. The nuplazid helps with the narcolepsy for sure I m just not certain I needed all the antipsychotic stuff in there.
rasagiline, cabergoline and I think thats all right now..when they reduced the mirapex I got sleep attacks..its tru that the nuplazid works for that but it is awful strong stuff and it looks like it kills the older people with PD for sure. THe doc claims it will make me live longer though
I don't make recommendations re drugs, because, believe it or not, I'm not a doctor, and more important, even if I was, I don't know your physical situation, but Nuplazid is not on the list of drugs prescribed for narcolepsy and, and I've always felt that if I were you, I'd get a 2nd opinion on your drug regime because it has always seemed like a lot to me - even tho I'm not a doctor and have no idea what you should do.
You have recently been complaining of edema like swelling of your legs and feet. Did you know one of the common side effects is swelling of the arms and legs?
I looked at the narcolepsy symptoms and it strikes me that they are very similar to Parkinson's sleep attacks. I suggest considering that possibility when adjusting medications.
He thinks I have psychosis because of the stupid psychologists in the ER mostly. I may also have said something slightly paranoid to my regular doc--were allowed to act like this we're Jewish
We all make flippant remarks - all the time. If I were given a prescription every time I made such a comment, my garage would be filled with drug bottles.
I was just discussing with my wife Donesia over lunch the same.thing I already had read that it killed people early and the doc knew he wanted me to take the medicine so perhaps it is false. The handout that came from the pharmacy only mentions early death and the exception for a younger person is missing.
Oh and the effect on sleep is possibly greater because Mirapex is antiHistamine(sleep inducing) and Rytary is Histamine(wakefulness inducing) so changing both at same times disturbs the equilibrium by twice as much as changing one at a time. I guess over time the equilibrium would have adapted on it's own but maybe that takes a pretty long time.
thanks . Unforunately I am truly damaged and so far they have not reacted at all. Do you know how the word could be spread more widely. Feel free to reporst where it can become more known what they did to me.
I hope the FBI investigates. If not I am really going to lose faith and have to move to Arizona or some place like that where they take the law into their own hands.
PwP must be their own advocate.Doctor Ahlskog avoids Rytary.
Required Reading Book List for Advocates of their own health.
Number One:
“The New Parkinson’s Disease Treatment Book” Second Edition, 2015
Dr. Eric Ahlskog,
Chair of Movement Disorders
Mayo Clinic, thirty-years experience.
Number Two:
Title: What Your Doctor May Not Tell You About(TM): Parkinson's Disease..
Author: Marjama-Lyons Jill M MD
Number Three:
Managing Parkinson's Mid-Stride: A Treatment Guide to Parkinson's
If managing your Parkinson’s has become more challenging than it used to be, the book Managing Parkinson’s Mid-Stride: A Treatment Guide to Parkinson’s is for you. This book explains why symptoms may get better and worse throughout the day and how to treat and cope with them. Find answers and read tips and stories that can help.
Medications. A Treatment Guide to Parkinson’s Disease
In 1988, the U.S. Food and Drug Administration (FDA) recommended that the daily dose of Sinemet should not exceed 800 mg per day, and as of 2013, this recommendation has not been revised. In 2018 the labeling of Sinemet recommends not exceeding a levodopa total daily dose of 2,000 mg per day. As movement disorder specialists, general neurologists and primary care doctors have learned, many people with Parkinson’s can easily tolerate the higher doses used to minimize symptoms. Some people
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Paul, that's a horror story and it makes me really angry for you. Roy has done a good job on sharing this. Keep focused on looking after yourself and sorting out your medications. I hope your gut has calmed down as that does not help with the meds. Ditto your stress levels. Really hope you are doing better now. Best Kevin
I'm so sorry to hear of your ordeal and hope you recover as quickly as possible. Consider some kind of trauma therapy....this sounds like a deeply traumatic situation and it could help.
If you're able to file a lawsuit, I'd go for it. I somehow doubt the FBI will be very useful for something like this, but maybe I'm wrong.
Paul, what a dreadful experience. I'm so glad you got out of that hellhole. These people have much too much power, but it's almost impossible to fight it when they label you as crazy. I wish you a quick recovery.
Your experience is like something from a nightmare!! I have so much sympathy for you. I’m so glad I don’t reside in America . There is literally no safety net for the poor the sickand vulnerable in that country .
I'm afraid this also happens in Europe and other lands. Everywhere on this planet, PD patients have often been looked at by doctors and other hospital staff member as pariahs. The lockdown (which has actually been a double and even a triple one for them) served as a catalyst to eventually expose the reality of that ostracism.
When my husband went to the ER with constipation that caused urinary retention, we mentioned that he had Parkinson’s disease and a Parkinson’s Specialist Nurse appeared within 30 minutes.
She coordinated everything...chasing up why the ultrasound was taking so long, organising the catheter and subsequent enemas plus other ‘moving’ medication, then arranged an overnight stay and kept popping in to see how he was and if he needed anything. Priceless!
The Parkinson’s Specialist Nurses have great respect within the hospital system.
Funny, because I have seen British, German, Italian, Greek and Belgian hospitals. I AM GLAD that I live in the US and have access to the best hospitals in the world!!!!!!
Paul, I saw your post on FB and it sounded like your experience in that hospital was like the stuff nightmares are made from, in which you were powerless to do anything about. I’m glad you were able to get out of there, thank goodness for your wife. Wishing you a speedy recovery,
I am shocked by this! I didn’t think Georgetown University Hospital had that kind of reputation!! The Parkinson’s Foundation sent me a kit to take to hospital, whenever I was to be admitted. The explanation for it, is that some patients, who have to take their Parkinson’s medication, every 4-5 hours, or so, were not getting their needed, ( Ex. Carbo/Levodopa ), medicine on time, causing problems! Getting that kit may help you, next time you are in hospital! E.R. Is particularly notorious, for not giving PD patients their PD medicine on time. I have freeze time, if I don’t get my medicine on time! So sorry to hear about your bad experience! I have a few stories to tell, about that, too, but I won’t go down that road today! Take care!
One thing you could do is send this to the Washington Post, MSNBC and CNN both (they are all about things DC). Of course you would have to edit your letter to limit it to purely descriptive, rather than judgmental or pejorative, terms so as to avoid committing what their lawyers would consider slander.
But publicity is probably the only thing that would make much impact. Never use an ER for "adjustment". Think very carefully about why you feel you need to be on medication to have orgasms (this is what I call "tinkering," and it can be a mis-placement of one's sense of proportion of what is important vs. what is really important).
At worst, use urgent care. Better: keep up a regular relationship with an outpatient caregiver so they get to know you. Carry a set of your medical records with you including a full list of diagnoses and treatments and meds and indications/contraindications, also keep a set on a flash memory chip you can give to them so they have more than one way to quick-learn about your case. But again, this is nothing to be doing with ER's, they have gunshot wounds, drug cases, all kinds of emergent situations and it these days is more like a MASH hospital situation, meatball and far too much complexity with far too little time and far too few resources to do a good job...they are life or death places, not "adjustment." This is pretty much true of every city ER. So learn well from this bad bad bad experience, save your life. "Adjustment" does not mean "emergency." These days it's like going to a military armory and popping off a firecracker.
Send a note to Nancy Pelosi...congress runs DC, and she's assertively Catholic.
I think I found out about it years ago when I wanted to escape from the hospital after surgery. Maybe it’s still not true. But my impression was they have to kind of sign off on you before you depart. I’ll look it up.
No I stand corrected I’m sorry. Apparently it’s something that doctors tell patients, but it’s apparently an urban myth. I’m not positive about that but that’s what I learned from a preliminary search.
So sorry, Paul, and I'm glad you're sharing this horrible story. I think folks are confused by the "medication adjustment" part. You were feeling terrible. You didn't just walk in for an adjustment; you felt very ill and anyone under those circumstances would have thought going to the ER/hospital was the safest thing to do. There are no words :(.
How does a hospital lose accreditation?
Hospitals may gain such creden- tials by choosing to be reviewed by a state certification agency under contract to the Centers for Medicare & Medicaid Services or to be accredited by either the Joint Commission on Accreditation of Healthcare Organizations or the American Osteopathic Association.
Pardon my ignorance, but you went to the ER to adjust your C/L? Couldn't your FP do it?
A couple of days ago, my husband and I had to go to our local hospital ER for his great toe was blue and surrounding area was looking real bad! I thought it was "trash toe"! Anyway, we were at the ER 5 and 1/2 hours waiting to see the ER doctor (one for the whole ER--regional hospital). No nurse was with her, and she asked us to remove shoes and socks! I asked her where her nurse was to help her and she replied "Understaffed"!! Fortunately, it was not "trash toe" but traumatized toe. She never treated it with anything, she didn't even wrap it with a band aid!! Everything that is happening now everywhere is the result of COVID!!
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Cardio recommendations from my personal experience : climbing machine and trampoline 
I am rigidity- dominant PD ; My personal experience!
Frightening Experience 
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