I want to share my story so that perhaps some of us can find a way to educate hospital staffs about Parkinson's Disease.
I had fallen in my home and was out for about two or three mins. MY husband immediately drove me to the hospital I had an MRI and a full body scan taken but nothing was found. I had large bumps on my head an a concussion. THe Physicain's Assistant who was in charge, told me I must stay in the hospital for one night.as they thought it could have been a heart problem. I told them to call my caridioalgist who would tell them recent tests showed my heart was fine. THey would not call so I went up to the cardio floor. My bed was a cardio bed that moved up and down and turned so that my blood would circulate to my heart.. with a concussion and PD a ,moving bed was about the worst thing I could experience.. I asked for a different one but they said this was the only kind of bed on that floor. I got into bed and phoned the nurse's station to ask for some ice. Their response to me was "Where are you going to put it? ON your heart?" They didn't bring ice. About an hour later I phoned again. A nurse came with a bag and asked what I was going to do with it. I told her I had fallen and I had large b umps and I would put it on my head. She said it wasn't on my chart. I told her I also had PD, she said that wasn't on my chart either. I must be cured I thought. Then a nurse came in to ask what evening meds I took . I told her i have them in my purse. She shook as she told me I must not take meds from home I can only take medication from the hospital pharmacy. I told her in about fifteen mins I would have an attack so she would have to hurry. She came backand told me the pharmacy only had one of my pills and I should take it. I told her no way I needed all three together and I took my pills from home. She ran out of my room in a tizzy. THen a hospital doctor came into my room. I told him what I had been going through and that I had PD. HE left the room to look PD up on the computer and returned to ask."DId you know PD isn't curable?" They knew nothing about PD. He also said that the emergency PA wrote on my chart that I needed to see a PT before I could be released because my gait was bad. I responded by telling him I'd be there the rest of my life if they were going to try to fix that.
We need to educate our hospital staffs about PD.
My experience was horrible and should never happen again to anyone.
I did write to the head of the Memorial Hospitals of Southern Calif.He read my letter and got back to me saying he would speak to all of the staff members that had contact with me. I appreciated that..
Written by
Koko
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Unfortunately your experience is not an isolated incident. My husband was hospitalized in a WNY hospital a bit over a year ago. He was not getting his meds as ordered after his gall bladder was removed. Despite all my pleas on his behalf, a nurse would mark the chart when the drugs were to be given BUT the dispensing nurse did not break her routine to make certain he got his sinemet an hour BEFORE he ate. I brought in a list of meds he should NEVER take and made them put them in the front of his chart. I felt like a nursing school instructor telling about PD. Everyone associates PD with a tremor and nothing else. We now have an Aware in Care hospital kit. I try to make certain it is updated so we have it ready to go if he needs to be hospitalized again. Also beware if you need anesthesia- He reacted terribly the last 2 surgeries. I will make certain I speak directly to the anesthesiologist before they put him under again. I was so incensed by his poor care I went a malpractice attorney. Unfortunately, they didn't want the case because it wasn't a big money case. We weren't after money- we just wanted them to wake up and listen to the patient. Who knows more about PD than the person himself.
Thank you so much for your reply. I am sorry you couldn't go through with the lawsuit. It may have opened a few eyes and done some goodl I understand the frustrations you went through. It surprised me that so little is known about PD even in our hospitals. Your husband is very lucky to have you on his side. My very best to you.
If you think this is unbelieveable please read the final part of my reply to a previous post::
"HOWEVER after watching a dear friend die from cancer in a hospital ward where squalor, starvation, dehydration, lack of any treatment, care or compassion were the norm I have decided that I must MAKE EVERY DAY COUNT, I must push myself to the limit to prevent this happenening wherever I can".
This was in a UK teaching hospital. Florence Nightingale must be spinning in her grave.
I always have two up to date copies of my medications and the times taken when I go into hospital, one to go into my file and one in my bag of medications which go with me. Provided I am also capable of doing so, I also insist on self-medication, and when I explain the importance of taking my meds on time, I have usually been allowed to do so. However, last time I had quite a battle to be allowed to do this, and it wasn't until I pointed out that although I had been in the hospital for over 24 hours, this was the first time I had been asked whether I had had any medications. Fortunately I was able to answer "Yes", because I had self medicated. I dread to think what would happen if I had to be anaesthetised, or sedated.
In the US the hospital information is Aware in Care, and in the UK there is a pack called Get it on time (PUK). If other countries have pospital awareness packs it would be useful for people if you posted, because both of these were developed after patients made organisations aware that things exactly likely describe can happen. Anyone can fall or trip and windup in hospital unprepared, so if you have something already that helps inform the hospital of why you need your meds you will have something to backup what you are saying. It is disgraceful really that hospitals know so little, but once you are in one there is no reason why you should start to educate the staff a little!
Parkinsons' UK is doing a great job in educating hospital staff about the need for PD patients to get their medication on time. Last time my husband was an inpatient he had his own drugs in a lockable locker next to the bed. This was opened every morniing and he could take his drugs at the correct times. He was in the day surgery unit recently, and I left him with an envelope with the drugs he needed to take marked with the time he needed to take them, and the staff made sure that he had them on time. One less thing to worry about!
I am pretty lucky in Chas SC that I have the Medical University to go to, the only emergency room I will go to, since they have a movement disorder and PD unit there. But I truely understand what you went through and there is no excuse for such treatment!! With the disease stiking more and more people, young and old, every single health care provider should and must know at least what PD is and how important their meds are!!!
I am glad you got some redress with the head of the Southern California Memorial Hosp.
I am curious about the Aware in Care Kit. Where does one purchase it. I have have PD for five years and with all the Dr's, Pt's , speech therapists , and group sessions I've gone to no one has ever mentioned it. I would really like to get one.
I've got my kit but I left home without it. But if you google Aware in Care it should come. I think APDA. I do carry my ICE info with me in my wAlker & phone (incase of emergency )
Yeap. Sadly to say but everybody who knows you especially those who have the vested responsibility to take care of you medically or anyone close to you at home needs to be aware or somewhat knowledgable about PD to include signs & symptoms, treatments including side effects of PD medications and progression of this disease if he or she is to offer his or her best care for you. I think it is time we all stop and think as well as learn and accept the fact that all physicians indeed do not always know or remember much about medical diseases or treatments/side effects of respective medications if it is not within their usual scope of day-to-day knowledge and practice norm. This also applies to other supporting medical personnel such as the nursing staff and others. This is not meant to be an excuse for Dr.'s and nurses not to know or remember or even brush up about every respective medical disease known to mankind. It is not possible or feasable for all who have successully achieved their professional medical degrees to know or to at least remember all the intricate details about PD or any other diseases that does not fall within their usual medical practice on a fairly routine basis. I believe we all have lived with this real life misconception that Dr.'s and nurses do or should know all about any disease states that comes to them for their respective medical care. I think we all would like to believe or expect this to be the true case wherever we go for medical attention. But the real life and unfortunate fact is, believe it or not, this is not the case at all. OK, maybe some medical personnel do know something about some unusual disease that they never have to deal with in their medical practice, but when it comes to a true broad and/or detail knowledge about a disease state even if confronted with such a patient or taking the responsibilities of caring for this patient be it at your own Dr.s office, the ER, or the hospital's nursing floor, well truthfully, think about it once again. Scary, right? Not suppose to be this way, right? But discouraging as it may sound and to learn about, these are the absolute, true facts of life in a nutshell.
My point here is not to discourage every person who has or who may someday succumb to some medical problem such as ours [PD] or others, but to make everyone aware that even though you end up in a hospital or other medical facility do not always assume or take a laid back attitude that since you are being admitted to a clinic or hospital with something other than PD that your health care providers [Dr's, nurses & others will be on top of things or knowledgable about your PD. This is where we, as PD patients, have to step in, remind and/or educate our own medical care team of some details about our disease in hand whether it may be the signs, symptoms, medications, side effects of meds, progressive disease states or anything else that we know better than anybody else. We are all humans bound to make mistakes who may not always know or have the knowledge or answers to everything, including medical professionals who take care of us. There's always room for learning and improvement no matter if you are the treating medical professional, a treating facility or the patient.
I concur with most of that in general - but PD is so common. At second or third to Alzheimers or something like that, where Alzheimers is the most common neurological ailment. I think you could reasonably expect most medical personnel to have some degree of familiarity with the basics of PD.
We have added to the Aware in care kit. I have put in extra battery for the remote for DBS and photocopies of all Medtronix (the manufacturer) advisories. It is just impossible to get ER doctors to understand that ANY type to EKG, monitor, etc that is used may have skewed data as a result of the stimulator. Some times I have feel liked SCREAMING NO TREADMILL STRESS TEST. After knee surgery and with the altered gait it would be torture for him.
Holy cow this kit is a blessing! My worst nightmare was having to go to our local e.r., basically because Neurology is such a weak service in the hospital. The rest of the hospital is wonderful. The last time I had to go, I had a nurse trying to convince me that my symptoms were being caused because my thyroid had been removed. I reminded him that it had been gone since 1987 and that it was monitored regularly. I got the "you poor, stupid patient" treatment until they finally got hold of my regular neurologist at one of the university hospitals.
Hernia...no prob with in and out surgery. Same for stent. Anesthesiologists seemed up to date on need for special requirements for PDers.
The prob is the nursing staff and the 'hospitalist'. In our more prestigious hospital, we had a terrible experience. Had initial resistance to letting him take his owns meds ((even a change in manufacturer makes a difference so he had to have Mylan generic and NO other until the hospital pharmacy got that brand in). The magic words (except in the UK which we are busy emulating (??!?) are 'lawsuit '. Then a day nurse 'got it' and made sure don got his meds exactly on time THAT DAY. After a night of staying with him and giving him the meds, my daughter filled in so I could go home to sleep. Night Nurse Diesel cowed her and NND called me at 3 am to chastise me that I didn't tell them my husband had dementia. He doesn't. They were just 15 min late with the Pd med which by this time was the right brand and supplied by the hospital pharmacy.
He just couldn't make himself understood by that time and his body was out of control. He was on a panic thanks to her.
The hospitalist was worse...she was an imbecile.
A later visit to the adjunct hospital proved the opposite...hospitalist immediately called floor staff together in our room and made it clear that ALL meds had to EXACTLY ON TIME and that we could use our own meds until the pharmacy got it in. He was Hungarian and maybe knew more than the previous affirmative action doll. Fabulous.
The kit, including stickers for nurses to stick on their foreheads and on the chart, is available free from parkinsons foundation.
Our internist said the problem was partly due to the traveling nurses which are used a lot in a seasonal location such as ours here in Florida. No one knows how much they really know but the just keep using them.
I understand that the hospital is in a difficult position if you let us use our own meds. But Parkinson's disease is unique with regard to meds and my concern is my ......and not with your policies. The situation is that I have the correct PD med and you don't. Until your pharmacy gets the patient's exact meds, we will use our own meds.
Pause for response.
If you use other meds and there are negative results, then our only recourse is a legal one.
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