Hi all, the "get it on time' initiative here in the uk is a fantastic one, it helps educate the health care workers as well as providing the pwp with material to take to hospital with them. it's only drawback is that if you go in as an emergency case you are likely to to have that with you. I would advise anyone here to take a look at anything downloadable on this issue and prepare themselves beforehand, it is impossible to know when we might need something like this. The other exceptionally good thing about this in the UK is that we have Parkinson's specialist nurse practitioner, not everywhere unfortunately, but in many places, who can be called on to advocate for us in hospital. In fact many people rely on them for a range of things, including getting meds adjusted and personalized to the pwp.

Something that we can do on this issue is to include it in the book as an urgent priority, we all know about advocating for a cure, or many cures, but when are they coming. In the mean time while we are waiting we need to do whatever we can to raise this issue. I have heard over the years too many cases of people who go into hospital and come out in a worse condition because their medication has been seriously messed about by medical staff who, to be honest, haven't a clue about PD. Paula's experience really shows that, with the lack of understanding that we often have to tweak our medication to walk the dopa tightrope.

To anyone who is collaborating with your major orgs, in the US or elsewhere, and may have a say in some of the decision-making, this is something that needs to be put into place as a matter of urgency. By this I mean an information pack that pwp can take with them or arrange to be delivered to their medical facility that educates the doctors and nurses on the issue, something that is specifically aimed at them. Parkinson's UK also has dvd's that can be ordered that do this one for ordinary hospital situations, and one for care homes.

If someone as savvy as Paula can be put through this, then please think about the long term effects on people who have no connect with the PD community, who is maybe very fragile and vulnerable, and whose family may know only what their doctor has told them. Many people do not even see an MDS or neuro. Our book journey has raised many issues, and this is one of them, that there are many people out there struggling with so little information. When we hear about people who have declined rapidly, this is one of the suspects.

AMA means "against medical advice". I tried to get my mom out of the hospital before her ding-dong doc would release her, as she was miserable and they really were not helping her ( I learned that staff "tries" to keep patients in the hospital a certain number of days so that when they go to the skilled nursing/rehab facility from the hospital, Medicare covers it. I was indirectly told that the hospital staff were "trying to help families" in this way. My take: BS. I'd rather pay more out of pocket than watch my mother waste away in the hospital bed for some magic number of days.... Also, seems like a very convenient way for hospitals to increase their revenue at a time when hospital admissions/visits/revenue is significantly down....)

At any rate, I was told that if I took her out before the doc released her to rehab, that she would be listed as AMA, and Medicare, which my mom was on, could totally refuse to cover things after that time which related to the reason she was in the hospital. Who would take that risk?

I had never heard of AMA before this and wonder how often it comes up.

i have skimmed over the sites linda listed and need to go back. Has anyone in them made lists to hang on a patient's door? without a name would this be too personal or breaking the HIPPA regs?

perhaps just a list on the door by condition ; the pd sign could include

Parkinson patient;

must have medication on time or when requested.


adverse event potential with no medication:

average high very high

drug dosage may vary due to time of day and with regard to:

sleep habits
metabolic and digestion factors
amount and type of food intake
emotional stress level

wouldn't want it to be too long but in bold lettering.

Paula, your story is absolutely frightening and I believe every word. My dad, who had PD, just passed away after three years in a long term care facility, and I've worked in one in the past. The prevailing attitude is that we know everything and who are you to tell us how to do things. We have a schedule (especially for meds) and don't be asking us to do anything different. You're labeled a "demanding" patient, which isn't helpful at all.

There are wonderful people there who, if they have time, will bend over backwards to make your life better. But more and more, the staff has less and less training. It depends a lot on the "culture" - when I worked at this place, the head nurse was on top of everything and really cared about the residents, so the staff worked up to her standard. Now, they haven't been able to keep a director, they keep quitting, and the staff just carries on in their own merry way.

It is VERY helpful to have an advocate, someone who gets to know the staff and follows all the previous suggestions given on this thread, like appreciating them, insisting on the basics like proper medication, and adding in all the little comfort measures they don't have time for like getting the right pillow. The staff needs to know that someone knows what's happening and will hold them to account if need be. Sometimes the rehab staff, OT and PT, can be really helpful, they have more time to talk as you're practising walking or whatever, and can pass things on to the nursing staff.

As far as a sign goes, I think a better place to put it would be on the wall next to the patient's bed. The staff just whirls by the door, but they often have to stand at the bed waiting for something, and might read it. A poster with big letters saying that our meds replace an essential neurotransmitter which is constantly being used up and if it isn't replaced as needed, there will be adverse consequences. It's not always used up at the same rate, so allowing a rational patient to control their own meds is the only effective method. You could note a daily maximum because they're all terrified of patients taking too much painkiller and that transfers over to all meds.

I hope you make great progress, Paula, and get away home soon. And I suspect you will leave an educated staff behind you, ready to take better care of the next person with PD. Best of luck to you. You've opened my eyes, and I'm going to make sure my husband knows what awful things can happen, and he's got to be ready to act.

This entire experience remains surreal. i have had flashbacks where i feel instantly stoned but not in a pleasant way. these are the times when i could "leave reality". i was warned i may have flashbacks by the nurse after requesting a conference. No one actually spoke to me at length about the reaction.

Thanks for verifying the "atmosphere" wendy. it is all the things you listed. cultural and language differences alone make it anyone's guess if you were understood. And then i speak slurred and low. but they are defensive and will be in control. I don't think I got to finish a sentence the entire time I've been here. I always start off low and with a stammer and times up.

Perhaps we could set up an internet group of advocates to make calls directly to the patients/ hospital or facility.

want to add something positive. we are getting to know each other and it is getting better. but it takes give and take and trust. now only a couple nurses are mad at me [for living is all i can figure]

carey said how hard it must be to be the only sane one. You know that becomes harder to prove when you are wrestling with a nurse.

love ya paula
tam

paula
I was finally responding to this thread when you called, and we chatted on the phone. It was a long, wordy post - and yep - you guessed it. I lost it all. Now I'm going off and it's at least 30 feet from here to my bedroom, so guess I will try again tomorrow and use wha dopamine is left to get in th e bed. Thank goodness I already brushed my teeth! (who would have ever thought I would be thankful for trite things like brushinng my teeth?). When will I ever learn to type what I want to say in a Word document first, then cut and paste? GRRR!!!

Paula, the get it on time stuff includes a sign that goes by the bedside, I believe. I too think that PwP need an advocate who will act for them when they are in vulnerable positions, as you were. Accountability is important, and if there is a healthy vocal and well informed person at your bedside and prepared to speak up for the things that ensure your well-being, they are likely to listen. If only because they may be held accountable for any errors in judgement.

I guess we all need someone like this, prepared in advance, so to speak, on the off chance that we have an accident.

Keep building the bridge with the medical staff - who knows, the next PwP they come across may fare better because you have prepared the ground.......

Take care, and get well soon

Lindy xx

I think it is a good idea to wear a Medicalert ID if you are on meds for any serious condition. This way, your instructions are accessible in an emergency, anywhere in the world via an international database with translation available. It doesn't deal with all the issues above, of course. But at least you can nominate a next-of-kin and doctor whose views have to be considered before any drastic action is taken. See: http://www.medicalert.org/

[QUOTE=

I guess we all need someone like this, prepared in advance, so to speak, on the off chance that we have an accident.

Keep building the bridge with the medical staff - who knows, the next PwP they come across may fare better because you have prepared the ground.......

Take care, and get well soon

Lindy xx[/QUOTE]

speaking of building the bridge, with the help of Dragon and assuming I can stay on for a short time, as my teaser informal advertisement to our book----let me first introduce myself as one of the co-authors.

Briefly, I am the soon-to-be 80-year-old author collaborating in writing the book we started two years ago and will soon finish. I am a late stage PWP, and a two-year resident in the state run Texas retirement home for veterans. A complete discussion of my condition will appear in the book together with a pledge to continue blogging under our website www parkinson's creative collective.org .

While I'm still able to communicate with my colleagues utilizing SKYPE I am frequently under the influence of 13 or more drugs including morphine, but I somehow manage to get through two hours without being a complete disruption.

Consistent with this thread, Lindy has asked us to offer our views as a supplement to Paula's horror story. While thankfully, I have not broken anything( lately) I have been carefully compiling notes on my day-to-day adventures in a retirement home. You might expect, they range from the absolutely ridiculous to the sublime. While I would love to do it for all forum readers, I'm afraid I'm not physically able to do so. I will include a checklist that will include many of the suggestions already made. Consistent with my warped sense of humor, I will also include several funny pieces that would justify your investment in the book.

With that, I'm ready to take another of my early afternoon naps. I must do that each day to cope with the stress of still another Texas Ranger World Series game! My neurologist tells me to avoid stressful situations, and he lives in another world other than that of the PWP.

Hurry home Paula. We need you to get back to work-----more stress~Bob C