this is a phrase from mike fox's talk at buffalo and rochester. It's a good suggestion for some people for staying positive - those with money, specifically. but the average pwp is going to end up in assisted living and in a nursing home.

here a pd patient will be viewed as any other patient, is not allowed to bring in his medications except when you have a name brand and they don't; then you give it to them to dispense. they never tell the shift change or new people about this bottle.

originally i wanted to write this story in the spirit of unity; cutting the rehab nurses understanding and breaks for their point of view. some really did understand but the truth is - we are not prepared for "the results" and must stay positive and face them. the workers do not deserve the breaks, are bullies and abusive. they are untrained and do not care about you. they gossip constantly even if you hear they mumble really low. just enough to keep you paranoid.

i entered this "skilled " facility in a state of psychosis from a drug combination that is yet to be identified. It had taken an MRI to find the fracture. i was in much pain so i had anesthesia for the MRI as well as surgery the following night. My hard of hearing orthopedist and i were going to have an adventure. I remember my first "black out" but at this point don't know if it actually happened.

I was given pain killers which always make me crazy and anesthesia, seroquel [never used it before] and dilaudid - a very powerful pain killer - stronger than morphine. THis was on top of my own meds, which included nortiptyline and xanax.
will continue hit send accidentally

The next several days were psychotic . i couldn't put two words together that made sense.

the nightmares were the worst i've ever had. even awake i could 'hear things" and thought people were there who weren't. PARANOIA out of control.all of my nightmares were about people turning against me and doing the cruelest of things. later on when awake i asked my friend where my brother was - he would never knowingly hurt me. she said what do you mean? he isn't here. i dreamt they tortured my old cat and thought she was dead. and on and on.........

here is one of the points i want to make. be careful when you sign your wishes. they could pull the plug too quick. i mean that. and i was ready to go. telling my doctor to not bring me back if my foot twitched, it was just dopamine, not a signal to live. but then i realized i was pretty clear headed for a dying person. none of this was real. only the point - i chose to go.

after a few days and much confusion i realized that i wasn't starving to death. they kept talking about the cat and i said is she alive? they said yes. my girls kept saying , "stop talking about dying.'i thought i had no choice because i wasn't hungry enough to eat. my friend asked, 'do you want to die'? i said do i have a choice? then i realized how far out there i really was. darkness and not comprehending.

the voices never stopped. well i managed to eat enough to get released from the hospital to rehab. its a nice facility and we were transported byy medicab. i was stark raving mad and telling the paramedics abunch of complete mistruths, just convinced that this was all happeneing. they left my bottle of sinemet on the seat and i took it. they said don't take it we willl get in trouble. i remembered dancing into the rehab center like in a waltz with the other paramedic where i was wrestled with by a nurse who got the sinemet away from me then immediately hugged me and said i'lll make sure you will get it.

there were a couple of sassy nurses - more than a couple- making cracks and i told one of them ..'grumpy"/ the nursing supervisor saw only a leg dyskinetic up in the air that had just had hip surgery. i told her my daughters were at the end of the hallway.

she knew it was about medication and believed me because i could tell her i knew i was crazy ,paranoid and psychotic. the next morning, i woke up to a nurse signing in and remarked /it's about the leg isn't it> they all cheered and said thank God she is back.

medication:

i was dropped drastically low in sinemet -like 12 less a day and not given
nortriptyline or xanax at first in the hospital. when i realized how much of my medications were not being given i freaked out and quickly got most of them back. now it was time to train the rehab place. what a battle....it never stops. they make mistakes every day and that's just with mine.

so here i am at the mercy of a doctors orders whom i just met in a land of incompetence and attitude. not all of them of course. but enough to know that it prevails in placese like this. this is one of the nicer ones.

so i have to trace the chemical trail- i can't go thru this in any future surgeries and doctors don't do it.

this is where the babyboomers are going to end up. i go to OT and PT and my exercising really helped.i'll be here at least a month. i'm sitting at tables doing peg designs, being quizzed for mentality [what happened in dec, 1941] where was i , what was my birthdate, surrounded by elderly stroke victims and wondering how i ended up here so soon.

but my head is clearing and i'm doing very well...therapists are good and i'm going to walk unassisted as soon as i get the ok from the ortho.

if anyone entertains any ideas about group homes now would be the time to speak up. one and the first one of my bones fractured and i'm laid up taking patronizing, scolding and mood from a completely negative and bullying staff.

i'm not ever going to mention names. but we all don't have to accept these "results".

we must stop being abused by the medical profession. i've seen enough already to write a book. and we are paying for everyone to do it.

seeing the light with a clearer head...

Dear Paula,
Thank you for sharing your horrific experiences with us all.
I hardly know what to say except I am so so sorry for what you have had to go through. I am glad you are getting some clarity now- that must be such a relief. I know many people will be sending their wishes and hopes and good energy to you- I hope it will help you with a speedy recovery.
Victoria

seeing the light with a clearer head...


Paula, so glad you are doing exactly that! And so nice to hear your very authentic voice, strong, and saying it as it is........

It is hard enough that you have had to go through all this, and I know that you above thousands of others know about this, and it still happened. You raise a lot of questions, and they call for some solutions, this could happen to any one of us. On the positive side your words evoked your presence so well that I could almost see you wrestling for that bottle of sinemet! Big hugs, it was wonderful to hear your voice, and know you are back......

Take care and do those exercises They might let you out on parole.....

Lindy

Dopadoc on seroquel

http://www.dopadoc.com/2011/07/13/se...needs-to-know/

Paula,
First off let me say and I think I'm not alone here....you are probably the sanest person I have ever come across on any of the parkinson boards so hang in there!
It's meds or perhaps lack of them which are giving you psychotic episodes etc.
Not your fault, just remember that!
So are you in a rehab hospital for a fractured hip?
If so just do the exercises the physios give you and remember them or get a copy and quiz the occupational therapists for tricks they have up there sleeves regarding easier, safer ways of getting about.
You're probably with stroke pts because you're specifically in a neuro ward.
Is there any other parkys there?
They should and if they aren't possibly could let you self medicate with your anti parkinson meds.
If it really is a hole of a place and you aren't benefitting discharge yourself.
As long as you have someone to act as caregiver it should be doable.
Best wishes Paula,
Lee

I think they truly thought that it might help me and some do well with it. i must do research on combinations with it. i had to sign permission to take it so it may be been off label. Yet it's anti psychotic. this is one of many questions at this point.