i went to the surgeon to have the staples removed and they gave me the evals written during my now diagnosed "post op delirium" -to take to the doctor. It was embarrassing to see written things like "she was alert.....with some inappropriate smiling. I think of Linda Blair in the exorcist.

I still haven't learned which anesthesia was used not seen the hospital's records. Have to go there. Both doctors that I see don't know just general anesthesia so here' another area where you must become your own expert. The surgeon agreed that the problem was the pain killer.

i was seen by a psychiatrist a few times and he said i should do fine going forward - no need for any psychiatric treatment [this must have been after my language came back.] i did take some seroquel - that is used for sleep and still could have something to do with my nightmares. look at those who take ambien...they become zombies and travel. By this time the fact that i had to read the statement 'no need for a Baker ACt with me as the subject gave me pause." how many pwp have been Baker Actd?? how many don't ever reallly come out of their anesthesia?
The neurologist for the hospital was a good guy who basically told me just get out of here as soon as you can and go back home and get back to your own thing. he said my neuro is the best, but he doesn't go near this hospital or rehab. he got lots of calls tho and i think at one point i was feeling upset that about him not coming. i received a reminder about am appt with him and in full loopy mode i said 'i was there where were you? i told the nursing supervisor that my doctor could kiss my **** *** ***. He should have helped me because he knows me. i am disappointed but know he doesn't go there for anyone.

THings in rehab are going very well. I have to stay here for a few more weeks i think, so i'm g etting to know them now. i'm allowed to leave for 4 hours and am going out to dinner tonight. i can walk but have much pain and need to start doing things like getting myself ready and be at physic al therapy by definite time. More like the real world.

There will always be patronizing and scolding. i snapped back once and haven't been scolded since.

wonder how long the typical rehab employee remains in one place?

a little humor:

i noticed it was indicated in my reports that i had Hepatitis C, which is not correct. i had hepatitis A with no lasting damage. i went to the front desk, where a 'manager" was and the head nurse also was working there and told him the situation. He didn't want this to be true...because he would have another thing to do. we all feel this way sometime but i don't want blood with hep c in it because they think i already have it. So he pulls my folder and goes thru it saying, " i don't see anything in here with HEP C. Then he said something really stupid but it shows how little confidence they have in the patients, especially if they have speech difficulty, he said, "ifyou had hep C you would be in isolation.

'yes i agree, i don't have it." he kept looking and i assured him it was there. the nurse walked over and found it immediately. Then he says oh ok i found it to which the nurse replied,"No I found it."

Has the human race gone completely ornery? that should have been dealt with:
Oh yes you wouldn't want that to be in your records, can you show me where it is?

Paula

It is so GOOD to have you back! And I am still chuckling about Linda Blair and the movie, "The Exorcist"- lol. And not EVERYONE in the human race is ornery, but we are definitely closer to that being true than we were in our era.

We sure could use more reminders of the "golden rule" - we can post it on plaques in classrooms, have them hanging in living rooms and kitchens, posted over the entrance of stores and libraries, there on the handle of the gas pump, and under the name of every newspaper title. We need to be reminded that the golden rule is "Do to others as you would have them do to you; it's NOT "Do to others BEFORE they do something ornery to you!"

Wouldn't the world be a more pleasant place if we all made an effort to treat others the way we want to be treated?
Peg

Thank you for sharing all of this with us. It is informative and inspirational to hear your story, about how important for us to be informed and to have informed advocates for when we are not able to protect ourselves. Also, about the necessity of standing up for ourselves when we can (the Hep-C incident).
I have thought often about wearing a medical bracelet about using deprenyl/selegeline. Besides the narcotics being counter-indicated I recently had a scare and a 1 day hospital admit for many tests after going loopy from the combination of the MAO-I and an herbal sleep-aid. I think it had a triptophan/ or 5 HTP element to it.
We are cheering you on Paula.

Victoria-lou

By all means we need to wear one of those bracelets.. Demerol administered when one is on an MAO-I can be fatal. That's just as important as a diabetic wearing a bracelet to get "sugar" when the y get hypoglycemic.

Let's work on getting something like this in the mill. Re: "Let's" - the "us" is all of us in the PD community who don't want the hospitals or ER's to kill us! Agree?
Peggy

I remain a fall risk and must have as assisted shower now that the staples are out. Tonite, the nurse has two student nurses. Thank goodness they are all female. So I had the humbling experience of showering while 3 nurses stood there and watched. gees......

Then I realized i had 3 nurses in front of me- 2 were student so they got a shower and dry length lecture about pwp needs in the hospital.

the next part is a secret. it occurred to me that i am never quite "on" because they serve 3 huge meals a day. the therapists see me off and contribute it to the surgery and recovery. i they handled me with kid gloves always telling me too fast.i am past where they think i am when i am on my feet. Another reason I did it was because i was off for a whole day due to pigging out on food and spent the whole evening with severe dystonia.

They will not give you an extra sinemet so that did it for me; these people are responsible for my release and have me walking like a very elderly person. i took an extra sinemet yestersday and the PT said , you are really zippy today i've never seen you so zippy. the OT and PT have seen me half on and off but never really on. today i took an extra one and the PT, again ,made me slow to super elderly speed. I always explain that this is from pd and this is sciatica and this is the surgery healing. my OT is more trusting and gives me ,more freedom. i cut my food intake. My roommate and I are the OTs most improved patients.

im ready to drive. the nu step has prepared me for it.

so in spite of having to sneak one when off to show what i am capable of doing properly medicated, it is just the truth -why should they think the surgery isn't healed when actually i'm off?

you do what you have to do when you are up against an uneducated nurse and/or doctor. most of the care assistants are not nurses. and i don't like men seeing me undressed.

i will only take an extra if i'm off for therapy or get dystonia. that should be my right - not to suffer; and nurses don't get into trouble if they don't know. i'd like to tell my PT and OT tho so they will be aware of exactly where i am at different times of the day.

sneaking in drugs. my friend and i were quite cool as i passed the bottle into her hand which was slipped into her purse and ever so calmly entered the facility .then i remembered the cameras monitoring all the entrances with monitors stationed at the front desk. so far so good. i am shooting for freedom on the 11th.

0ne fall cost me a mental delirium, almost a week of my life, with just a few days blatantly psychotic and in and out the rest of the time. As hard as I've tried, my doctors still put me off, get up to leave when yu begin to speak or ask questions; they just don't listen. i don't get dyskinesia from sinemet. i get it from not enough sinemet. my mouth is very affected with what i think is dyskinesia....wondering if its tardive. in one ear and out the other.

so what am i supposed to take away from this? more of what makes people tick; i came in raging so it was only natural that they did talk about me. Their attitude was to ask me what i wanted and then not respond with a comfirming "ok" but just attitude. i called my brother in seattle and said i felt trapped in a situation where no one cared about me and i wouldn't be able to get enough meds. i panicked because what i feared was indeed true.


i agree that you need an advocate. and never miss an opportunity to explain what they are seeing. i have a grotesque signal that i'm going off and that's a head bobbing from side to side.

this facility is lacking the reputation it could have. but today there were a couple assistants gossiping in my room. i actually like most of them...when you have to do battle, you can't see what they have to offer besides saying "NO U CAN'T HAVE YOUR SECOND XANAX until 4 hours go by. meanwhile i take them 2 at a time at home. Hospital policy.


the voices are all gone. i'm back and anxious to get out. ill be going to the hospital and getting my records and apologizing to my nurse, monica. who attended to me the most and i did things like ask her if she was captain of the cheerleaders in high school and told her she should do a tooth commercial because she had very white teeth.

i am equally as enlightened about anesthesia fog,n feel trusting an anesthetist blindly is not wise. find out what is in all the bags and request some time to talk about what is coming afterward. one of the problems with this event is no on sat down with me and explained what happened and i was a pwp advocate monster.


tonight another new nurse is on duty and didn't know about my personal brand name bottleand only brought one instead if two. so meds arepushed back an hour but i didn't go off because the booster i had taken earlier tied me over . with new ones again knowing nothing about specific illnesses. the next battle will be to get my first dose if i wake up to someone sticking a needle in my arm and saying, i'm mark, from the lab. i am still on blood thinners and high dosages of potassium.


i am doing so well because i exercise regularly. it's the most important thing for yu to have strengh to come back from this. incision is healing but its the pd muscles that need stretching.


i hope to come home soon; i'm looking into meals on wheels and any other resources availble to me. my house is for sale. i really needed the nourishment and the caregiving; my load is heavy-been a long while since i felt cared for and the meals are huge.

ok u are probably sleepy, but someone will get something out of this. i hope some of them are doctors , nurses and care assitants.

sorry for errors ; may clean up tomorrow. are we losing posters?anyone can help with questions.

Paula,

Hearing your ordeal is quite sobering. So sorry that you had to go through this; as Carey has said that people with other conditions suffer this too. Fortunately, I have spent very little time in hospitals, and the only time I did the staff were fantastic about my meds even allowing me to rely on my own until I got put on the pharmacy rotation. I have had ER staff laugh at me for calling an ambulance for myself when I fell down my front steps in an ice storm. Never mind I may have lost consciousness and didn't feel safe to drive with a bleeding gash in my head...

We can shake our heads at the willful ignorance, but what really strikes me is the lack of compassion in these people. Balking at you over one vs. two pills at bed...I think my first thought when looking at your chart would be "dosing every two hours" to keep her self going and think that would suck. Has anyone even asked you how it feels to have PD? Why do you need meds so close together? This is a gold standard treatment after 50 some years of research? DBS is not a treatment innovation but rather a way to try and undo the physical dependence/addiction we have to Sinemet et al. If it were truly innovative Sinemet would not even be a factor.

May I ask what you or docs think caused the hallucinations? Was it a combo of Sinemet and anesthesia? Please tell me they did not take you off all meds for even a day.

Here is a funny thing...speaking of seeing things. I recently installed a timer app on my browser to monitor my online time at night and I didn't know it was running. This is my third time writing a reply. The first ones literally poofed before my eyes. I thought I was seeing things...but most annoying is just as I was coming upon finishing my reply the screen would blip or flash and my reply vanished. It was rather scaring me until I realized it wasn't gremlins and I had installed that timer just had no idea it would cut me off of whatever I was doing on the computer with no warning...how rude! ;-)

Your words have really moved me this morning!

Paula said:
so what am i supposed to take away from this? more of what makes people tick; i came in raging so it was only natural that they did talk about me. Their attitude was to ask me what i wanted and then not respond with a comfirming "ok" but just attitude. i called my brother in seattle and said i felt trapped in a situation where no one cared about me and i wouldn't be able to get enough meds. i panicked because what i feared was indeed true.

Laura said:
We can shake our heads at the willful ignorance, but what really strikes me is the lack of compassion in these people. .. . . Has anyone even asked you how it feels to have PD? Why do you need meds so close together? This is a gold standard treatment after 50 some years of research? DBS is not a treatment innovation but rather a way to try and undo the physical dependence/addiction we have to Sinemet et al. If it were truly innovative Sinemet would not even be a factor.

In nearly every hospitalization of PWP, the major problem I see consistently is the lack of compassion - this is true even with those responsible for direct patient care. You cannot explain it away by saying it is the "ignorance" of such employees - it takes "compassion" to want to learn.

We all know what needs to be done; we're just not sure where to begin.
My first priority would be to "teach" the person living with PD - then they would know what to expect rightly their's. The next would be to teach the direct patient care personnel - yes, even some doctors would be in this class!

Now, if bandnido is reading this, I just saw his lightbulb above his head turn on! There's a special "book" nearly complete to help start this mission!

Peggy