Paula et al

I have been there - I thought I had died and gone to hell (being without meds). And you get in such bad shape that you go into "out of it" mode; you can see and hear what's happening, but only your body is actually there (you just have to have been there to understand). But I know this: NO ONE SHOULD HAVE TO EXPERIENCE THIS!

Mike, I doubt you have ever been to this out-of-body experience - it's beyond "not showing the results." You have no control whatsoever, and that is why we MUST be prepared when (not "if," but "when") this occurs again. It's more important than Advanced Directives (formerly called a "Living Will." )

Let's not settle for a checklist filed away in a book or some resource file; let's be frightened into action. Action so clear that there is someone you can contact that will take charge of the situation - a perfectly understood plan prepared in advance - with a back-up safety net.

Who's with me?????

Peggy

Nothing like a little psychotic activism to make a point, Bob I'm coming, need to eat for the next few weeks and take in the nourishment that this rehab is supposed to be about. things are flowing better; the nurse who reported the complaint about 1 or 2 at night, knew i wastossing and turning and couldn't sleep and i was supposed to take one more [they allowed the last dose to be only 1.] She said very sympathetically - you don't want this sinemet do you? i said no. the bridge has begun here and this was a great example.

I'm with you, Peg! I'm outraged that what happened to Paula could happen to anyone - but I'm especially frustrated that it happened to Paula - a knowledgeable, longtime Parkinson's advocate. This is why we have built a community - to take action in such a circumstance.

I spoke to Paula at length on Saturday; so glad to hear the humor in her voice, but our conversation was her talking and me responding with a series of gasps followed by "OMG"!! every few seconds. I told her we would do something.

I've also spoken to Bill Bell and Greg and AJ to try to figure out if there is a way to move one or more of the orgs forward to promote an educational plan for health care providers (PWP aren't the only sufferers - diabetes patients in hospitals and nursing facilities also have trouble getting insulin when they need it). Bill likes the UK plan that others have spoken of; he has talked to PDF about it in the past, but it might take a story like Paula's - happening to a person like Paula, who is well known by all of the PD orgs - to get the ball rolling.

It angers me that the only way to get proper care in the hospital is to have an in-person advocate at your side (I have also learned this the hard/sad way this year as my mother is in longterm skilled nursing for Alzheimer's; my dad's daily presence is integral to her care).

The patient has been lost in a system that caters to the bottom line - it's not efficient/too expensive to individualize institutional care. The result is the kind of torture that Paula had to endure. It could be anyone of us.

each day more of the story unfolds. i did have a daughter, friend and brother helping me. my friend and her husband took me to the ER and stayed - she revealed that in so many words she was told to butt out. This is such a big issue and so tied int0 the whole stressed out cultures. you can tell they are stressed because they are angry and defensive and they do not like being told anything.They are short handed and i wonder if they'd even bother with anythng they have to read.

maybe we iust aren'T ever going to feel safe. But i think a building plan is needed for the baby boomers are coming in psychotic and with alzheimers and they are just starting. i see the blank stares and confusion. I keep looking for what i need to take away from this ..... i'd rather be with other pwp maybe group the conditions so many would need the same care. It's massive.... where do u start?

Paula, keep posting from the front line, as Bob has done. These are things that we all need to know, I am just sorry it is happening to you. But then I am also offended that it happens to anyone, that rights and responsibilities are eroded, and compassion on the back burner. Everyone is so stressed right now.

Your humour and ability to convey things richly and honestly shine through.

Lindy

well yu can cross off one facility as 'GETS IT'. i seemed to get thru to the most angry one by saying it's the body not the clock. now they are noticing the head bob when i need more. it's like a dang lighthouse rotating light. next time on duty she just dropped her anger and decided i wasn't a prima dona [ha!] and now i am wallowing in nourishment, called sugar, babe, honey, do you want your xanax now or at six?

who else wants to be psychotic and train a rehab clinic?

i'm just getting on and feeling good. but i have to tackle the hospital. going to the ortho surgeon and asking lots of questions. not looking to blame or sue or anything . just don't want to repeat it.

theory:
i don't think i was completely asleep. didn't feel surgery but woke up due to the foot tied to the weight. i think they put me under again, which is why i can describe what it feels like to almost die. This isn't morbid and think you will understand if you read this. someone should have sat me down and talked to me.

for some this kind of experience causes post traumatic stress syndrome. and it's not that uncommon.

At the hospital i kept saying, "it is a long way down and gets darker". waking up under it all explains it all. that's when in my mind i was saying, don't bring me back if the foot kicks it's just dopamine, but also noticed i was pretty alert.

it is mandatory to check our your anesthesiologist; the other article crossed my mind and i understand i accused people of it. an auditory hallucination caused me to accuse before i read The Junkie in the O.R. I' must get the records and scutinize them . everyone knows that pd are diffictult to put under and slow to come back.

i may never know exactly how and when, but i know i was awake in the darkness of anesthesia. I'm hardly the first; i was lucky - u can end up in a permanent coma, which brought a poster here seeking support for her mother after her spheremine surgery in a clinical trial. she is alive and gone; yells inappropriate things but went in as an active woman with pd.
never came out of it.

it's a very important. i could have been feeling paranoid because of hospital staff indifference or impatience. this could lead to negative dreams - mine were horrid. Patients are the brunt of every medical worker's bad day. they make the mistake of thinking we are stupid - so much to change. the first is frightening, the second - well it takes u to the brink of death, which is where you are under anesthesia. it's not morbid, it's fascinating and they pass addicts around "like pedophile priests;" a very dark topic but we are headed for more where this came from.

http://www.ctcps.org/campaigns/junkie.cfm

http://en.wikipedia.org/wiki/Anesthe...esia_awareness

In just a few days, Paula has transformed care of PWP in this rehab facility, by talking to the staff and explaining PD meds and special needs of PWP. It is clearly a national problem. Until one of the national orgs steps up to take on this issue, maybe each of us could help to light a flame in our own communities. If you belong to a support group, bring up the issue and ask if there is any education or training going on in your local hospitals and other health care facilities. If your group is affiliated with APDA or NPF, ask the leadership to contact them and tell them about your communities’ needs.

I have been hearing hospital horror stories like Paula’s since I was diagnosed 15 years ago. It’s time to say “NO MORE”

An action brigade of individuals!

In 2008 I ended up at the George Washington University Hospital emergency room with an infected cat bite on my hand (went directly from the plane when it landed in DC on my way to the PAN Forum). I was in the hospital for three days (missed most of the forum) - but the point is - I told the nurse that I needed my PD meds on MY schedule, not theirs. To my great surprise she replied, "I know - we just had an in-house training about that!" And I never had a problem. Turns out somebody on the PAN board had arranged it - good luck timing for me! (I was prepared to educate if I had to - I wasn't about to hand over my stash without a fight; and I kept the pain killers to tylenol in order to remain clear - I was 3000 miles away from family, and couldn't believe I was in such a mess so far from home!)

One facility at a time, either by individual or organization, we can improve the system!

I'm glad you're feeling better, Paula!

Carey
I remember that cat bite. It was surreal tha you ended up staying in the hospital, and it was your own cat - noot some stray that attacked you!

Linda said I have been hearing hospital horror stories like Paula’s since I was diagnosed 15 years ago. It’s time to say “NO MORE” . And I have had PD for going on 18 years. Not only have I been hearing about this kind of thing, I have experienced it!

The first was during an outpatient short-stay hospitalzation for bladder surgery. When I showed up early that morning to have surgery, everthing got quiet, then various hospital staff were running in and out of the surgical "hold" area asking me questions. Then I started asking questions. It seems the anesthesiologist was refusing to put me to sleep. Why??!! This surgery had been planned for weeks, but the only one paying close attention was the anesthesiologist.

You see, if you take an MAO-Inhibitor (such as Selegeline/Eldepryl or Rasagiline/Azilect; you have to clear that med from your system (preferably 14 days prior to surgery) due to the fact that the anesthesia meds and gases can interact and be fatal. Oh! Just a minor detail overlooked! Now, how many reading this knew that? Not many, I am certain.

At another hospitalizatrion, like Paula, I cold not get the nurses to give me my meds on time. I explained that just 15-30 minutes late could reall mess me up. I had to demonstrate what happens when that schedule is not followed. I nearly fell when "off," but instead of the nurse calling the doctor about me not getting my medication on time, she requested the doctor to write an order restraining me in bed - i.e., I had to call for assistance to go to the bathroom or to get out of bed. That was a nightmare, and the nurses took offense at me saying I was "tattling" on them, etc. After some heated disputes, the doctor simply wrote an order saying "Patient or a family member can administer her own medication at bedside." In Paula's case, that would not have worked, because she was not alert ernough to take her own meds.

Finally, I was reminded how important it is to be your own advocate during another surgery I was to have. Most pre-op patients must be npo from midnight the night before surgery, (nothing ti eat or drink) but you can take your PD meds with a "sip of water." That can be a problem for those who have trouble swallowing, so make sure your doctor knows that you have had more than a "sip" to get your pills down.

During this same surgical event, I knew that a medication that is often administered as part of the regular protocol before surgery is Reglan, given for nausea caused by the anesthesia. I reminded the staff that I could not take Reglan, as it interacts with the carbidopa/levodopa and some of the other PD medications and can even make PD symptoms worse. . It must have been the Good PD Fairy looking after me, because as I was going into surgery, the surgical prep nurse shows up at my doorway just prior to going into the operating with a cup of water and guess what else? Yep, Reglan! Even as doped up as was, I refused to take it. After some discussion the head doctor over surgery told them that I was right to refuse to take the Reglan. http://www.rxlist.com/reglan-drug.htm

Fortunately, I was spared some adverse effects that potentially could have occurred. But that is something I shouldn't have had to worry about! But doctors and nurses cannot know al things about all situations, and that is why we need to get some protocol in effect to prevent things like this from happening. There are some facts we need to make known to have in an electronic record that PD patients should have on their person (a bracelet maybe), some of which I have mentioned above.

This thread has already been brought to the attention of some of the orgs and we will get the ball rolling. Another thing in my favor is that my two daughters are Nurse Anesthetists - and they look closely after me. If a patient who has difficulty breathing or swallowing when not keeping his/her meds on schedule, doesn't it make sense for the staff to know how risky that can be when anesthesia is being used? Or if we get bad dyskinesia after neck or hip surgery, shouldn't the staff and doctor be prepared for such things? You had better believe it!
Peggy

That would be Harvey -- sleeping peacefully at my side while I type! (He's as old as my PD - I got him the year I was dx'd in 1999) To be fair to him, I was trying to break up a fight between him and another cat - really a dumb thing for me to do! Eight hours later I was on a plane to DC; after another five in the air, we landed and my hand had swollen to the size of a softball!

Back to topic:
I didn't know that there was such a problem with MAO-inhibitors and anesthesia!