[paula_w]

This hospital visit was unplanned, so there was no build up of anxiety level about my meds. SInce I was having some kind of 'event', I came in thru ER, and things were not as rigid. It helped that my daughter had done some training there and knew some of the people. So as the long wait began on the table with some testing and waiting for a room i had my meds there with me.

When it came time to take one, my daughter had gone to work so I obediently asked the nurse for a sinemet which was on the counter. She said , "wait till we get upstairs and verify the med is what it says it is."
So I snuck one after she left.

Up in the room, there was the usual confusion about establishing a med schedule. They told me to put my meds away - that I had to take "their meds." BUt they didn't take them out of the room.

I stashed my sinemet in a number of places. i wasn't offered sinemet until about 8o p.m. but had taken care of it myself way earlier than that ..By then a new male nurse had come on duty and was puzzled about why I didn't want to eat the whole sinemet but just asked for half. i said it would keep me awake and confessed that i had to take some of my own earlier so he said ok just tell me what you take. I breathed a sigh of relief.

Next morning i had to go for a stress test. I was not supposed to take meds, but convinced her if they needed any movement or stillness from me i would have to at least take sinemet. SHe gave me one but there was a back up at the testing, and of course after a while one sinemet doesn't keep you going. The test lasted over 5 hrs.

So I told the nurse at the testing if they wanted me to lie still for the pictures I would need more med. At first she juist smiled and patted my knees. so I just let my body speak for itself and told her that wasn't gomg to go away until i got more med.

They called upstairs and my nurse said i wasn't due for another med yet. THen questions , more questions, confusion, and finally my nurse came down to the lab and kiddingly asked :"Are you causing trouble down here?"
More patronizing pats but no real listening as I tried to say that was my battery for operating. i didn't want to take the whole thing tho, trying to strike the right balance with the valium they had just given me because i had happened to remember that the doctor had written it in the orders

Another 30 min wait for meds to take effect. Then the test was finally completed in another hour.

From that time on, I just dosed myself around what they gave me. They looked the other way. But i was a bit peeved to be awakened at 6 am from a very sound sleep by a nurse who seemed to think it was time for a requip..........lord have mercy.

So the solution is....sneak your own in.......trust me.
lol, Paula

[EnglishCountryDancer]

Here in the U.K the Parkinson;s Disease Society has been running a
'Get it on time' campaign to make sure that people with Parkinson's in hospitals and care homes get their medication on time - every time"
My husband is going into hospital for an operation unrelated to his Parkinson's .It will be interesting to see how effective the campign has been.

[MKane]

On both the visits to the ER last spring, I had told them that I had PD. Nevertheless, they gave me valium. What I don't understand is their hesitancy to recognize and know what to do with PD. i was sitting at a local craft fair a few weeks ago and two different people came up to me and asked me if I had PD. Now, if laymen in the genereal public can recognize PD, why can't ER doctors who have been told that the patient has it, not recognize it?

MKane

[chasmo]

my wife is great at this. ALways have a printout of your meds and their schedule, with a short synopsis of what happens when you do not get them on time.
Then you need your care-giver to go down to the nurses station and (this is important) identify the nurse who will listen and not politely nod as she fills out some form.

my wife got both shifts on the ball. She was down to the nurses station like a shot if they missed a med.

In any event, take your own supply of meds with you. UCLA did not stock Tasmar and tried to give me a placebo.
I told them to keep it.
DO not be afraid to challenge the nursing staff (with the realization that they see themselves as over-worked and underpaid....which-by-in large they are.....)

Your health is the ONLY issue that is important here. NOT the nursing staff's convenience! tell your doctor or failing that, your hospital administrator if you do not get the care you need. let your MDS know whenever you are hospitalized.

It's a good idea to get in the neurological ward if you can.
You should work this out with your MDS and your GP if you can, before-hand.

I noted the level of care was MUCH improved in the neurological ward than on the surgical ward at UCLA. (nurses we prettier too!!)

Charlie

[lou_lou]

Yes, this is funny - but true...
The hospital has no idea we need our meds as needed!
thank you for sharing Paula!

[ol'cs]

.. absolutely scary stories of PWP who are left unmedicated upon entering an institution of "care". My own experience was similar; no "treatment" upon arrival until they've got their butt's covered. Then, neccessary medicine, is administered at their discretion. When they decide that you are "telling the truth" about all the medications that you are using, how often to expect to hear you request for more medication, and in what doses, horrible "horn-locking" can ensue. BE prepared, good advice

[paula_w]

Charlie, that's the best advice but not always possible and still involves head butting. I've gone the writing out the list route and we wrote one out in the ER with the nurse. But they forget.

For example, I said I need one of everything first thing in the morning - but their first thing in the morning is different from yours. The 6 am requip - I have no idea where that came from - lol. I was too groggy to argue so when my morning batch arrived later, I just told her I didn't need it - had already done it - i knew I was going home that day.

She just said, "I figured."

But most of them are not accommodating that way.

England - hats off to you for your awareness program - great idea!

Paula

[GregD]

Back at the end of July when I was having my clumsy problems, I knew I was going to spend at least 1 night in the hospital. I took a print out of all my meds and times I take each one with me at registration. I told them I either get my meds when they are needed or I'd walk out.
I couldn't believe it. After all the bad stories, I got my meds on time every time. The nurses seemed like they couldn't do enough to help me or make me as comfortable as possible.

GregD

[pegleg]

History repeats itself, doesn't it, Paula? I read that "Get it on time" program in the UK. Maybe we should try for something similar.

Take care of #1 - nobody else will.

Peg